The Spiritual Journey of Family Caregiving

Diabetes and Dementia

2011-10-09T10:57:00.000-07:00

If you work for very long in the field of elder care you eventually hear the following concern: my dad / my mom is wasting away and all he/she wants to eat is sugar. The answer: Get your loved one tested for diabetes!

There is a very strong correlation between the inability to utilize blood sugar and dementia. Cravings for sugar often occur because the body (and brain) relies on having adequate amounts of glucose. Most of us gain weight by eating sugar. If a person is eating too much sugar and is losing weight that is a serious symptom. If it has gotten to the point of them losing their appetite or feeling nauseous after eating, it's even more imperative to get the blood sugar levels checked. It can mean that the body has become insulin resistant or is not capable of producing enough of the insulin it needs to make use of the sugar the person so obviously craves.

People with diabetes over the age of 60 are twice as likely to have dementia. People with dementia who have uncontrolled diabetes are much more likely to show a worsening of all dementia symptoms when blood sugar levels are out of balance.

Click here to read more: http://www.dailymail.co.uk/health/article-2039401/Over-60s-Type-2-diabetes-twice-likely-end-dementia.html

NEW BOOK: Waking Up In the Great Recession Mormon Desert

2011-08-06T13:31:00.000-07:00

Going through a Great Recession crisis in addition to family caregiving has got to be so intense... I don't want to think about it! But the one thing that makes it better is banding together in family and community. I'm announcing my latest book today. It's not about family caregiving or Alzheimer's Disease or dementia at all! But it IS about the great importance of going beyond differences to band together to heal our deepest, most critical concerns.

The book is called WAKING UP IN THE GREAT RECESSION MORMON DESERT and people who reviewed an advance copy of it have given it some wonderful reviews. For example, David Spangler who was the previous director of Findhorn and has sometimes been called the father of the New Age movement had this to say:

This book is a winner. It has everything a good book should have: suspense, excitement, pathos, joy, laughter—-lots of laughter—and great characters you care about and can genuinely root for! And it's non-fiction! But what it has most is love and wisdom. Profound, heart-opening love and wisdom. It is hands down one of the best books on spirituality and its role in meeting the challenges of our time that I have read. And did I say that it's funny, too? Be good to yourself and read this book. Be good to your friends and buy them a copy. ~ David Spangler, author of FACING THE FUTURE and SUBTLE WORLDS: AN EXPLORER'S FIELD NOTES.

My partner Paul and I are the "great characters", by the way. The book is a memoir and it follows our path from our original home in the beautiful New Age, ultra-progressive town of Santa Cruz, CA to a predominantly ultra-conservative Republican Mormon community in the eastern Arizona high desert. The timing is immediately after the election of Barack Obama and the passage of Proposition 8 (the law repealing gay marriage in California). The result is at turns poignant and funny and eventually leads to a spiritual wake-up call that shows the importance of connecting the political and the personal in our task of developing spiritually on the planet.

Read more about it, read excerpts and reviews, and get your copy here.

It's available as an inexpensive instant pdf download or as an autographed physical book, both directly from us. It is also available on the Kindle and soon other places as well.

TED Talks on Aging

2011-06-13T17:34:00.000-07:00

Do you know about TED? TED talks are wonderful 15 minute introductions to all kinds of intellectual subjects. They're almost always fun, interesting and informative. This blog has an article with links to several TED talks on aging, including a couple about Alzheimer's Disease and related neurological illnesses. Take a look!

Reverse a Stroke by Taking Action Fast

2011-05-02T23:23:00.000-07:00

A Facebook friend, Gary W. Bourbonais, wrote this as a service in honor of this month being Stroke Awareness Month. He says "it's worth it if it saves just one life."

Hi Folks....

Back on 12/27/07, I had a clot type stroke in the cortico-spinal area of my brain....I was left with a paralyzed right side, a vague awareness of what was going on, and a face out of a B-rated Horror
Movie.... Because of the extent of the paralysis, I was told I faced the prospect of assisted living...

That scared me more than anything....

Today, I am existing independently, though I need a brace and cane to get around.....My right hand (the prior dominant one) has maybe 20% function, with no fine motor control to speak of...Everything is
harder to do, essentially one handed, and I do get tired easily....

I'm not griping....I'm glad to be alive, and an independent Survivor....My cognition was essentially unaffected....My face is normal, as is my speech....I'm one of the luckier survivors.....

The thing is....had I recognized what was happening to me, I might have none of these affects.... For a clot type stroke, there's a 3-4 hour window when it can be reversed.....I got to the hospital too late to reverse it, but soon enough so I lived...

How common is stroke? It's the third most common cause of death in the US.....Eighty percent of all strokes are the clot type....There are over *6 million* stroke survivors in the US alone....

How to ID a stroke.......S....T....R.......

*REMEMBER* the 1st Three Letters.... S...T...R...

S.....Ask the individual to SMILE.

T.....Ask the person to TALK and SPEAK A SIMPLE SENTENCE
(Coherently). Example....It is sunny outside today....

R.....Ask him or her to RAISE BOTH ARMS.

If the person (or you), have a problem with any of these tasks, it's time to call 911...

A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke...totally. He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.

They've recently extended the window to 4 hours in some cases...

NOTE: Another 'sign' of a stroke is this: Ask the person to 'stick' out their tongue.. If the tongue is 'crooked', if it goes to one side or the other, that is also an indication of a stroke.

Hopefully this bit of knowledge will help some folks in the future.......

Surviving a stroke takes a lot out of a person, both physically and mentally.....

How successful one is depends a lot on the support they have, and believe me, I can personally attest to the need for that support...And thank the folks that provided it to me, from the bottom of my heart...

I found a great online resource for Stroke Support.....It's a free site, started, run by, and for, Stroke Survivors and Caregivers....If you are a Stroke Survivor, or Caregiver, or know someone who is, give
them this link..... http://www.strokeboard.net/

I suspect they'll thank you....It puts you on the Forum discussion page, and you will meet folks who are walking the talk......As a guest, you can read the posts, to get a feel for what the site is about....

http://www.strokeboard.net/

***

F.A.S.T.

Another Anagram is F.A.S.T (Face, Arms, Speech, Time) If they have trouble smiling or something is not "right" with their *Face* (F), if they are unable to hold their *Arms*(A) out in front of themselves at equal height, if their *Speech*(S) is affected or if the words come out Slurred(S), then you need *Time*(T) to be on your side by responding quickly. Don't hesitate. It's better to be wrong than sorry.

***

Care to All....

Get "The Spiritual Journey of Family Caregiving" as an E-Book download

2011-03-08T11:23:00.000-08:00

Times are changing and they're changing fast! A few short years ago e-books were a ridiculous notion. Then they became popular and people were encouraged to keep the price of an e-book close to the price of print books so as not to hurt print book sales. Well, not so fast. What's the point of offering an e-book if not to promote the ideas they have to offer at a doable price for people who won't spend the cover price of a brand new book, especially the price of one done on a print-on-demand basis?

So I'm making my book available as an e-book download for just $4.99. What? Will she make any money at that price? I hope so! Especially if you tell your friends. Here's the link to my shop at Healing Communication Press. I hope to have it available for the Kindle as soon as I can, too and other venues as well. Watch this blog for updates.

Home for the Holidays -- Omigod!

2010-12-07T20:15:00.000-08:00

I haven't written in this blog for months. My life is in great transition and writing anything just hasn't been on my priority list. But I suddenly noticed that, despite my lack of activity, hits to my blog suddenly jumped. Huh?

Oh yeah, people just got back from the Thanksgiving holiday. And, like millions of other people, they saw a beloved parent or other older relative they had not seen in a long time and were shocked.

Grandpa made a speech at the holiday feast thanking God that the family was "together for the first time in forty years!" Um...nobody said a thing but everyone knows the entire family had come together for his birthday just a few weeks before and many family gatherings over the years!

Nana seemed perfectly okay but then went shopping and brought back nothing but cookies, lettuce and pizza. So? Well, there was already too much lettuce in the frig, a cabinet full of the same cookies and a freezer full of frozen pizza. And Nana's response when she got home? "Oh look, dear! The children already bought pizza! Isn't that sweet?" But it wasn't true.

Auntie Anna's kitchen was filthy and she didn't seem to notice. Her bills were piled up on the dining room table, about four month's worth, and yet she denied that there was anything wrong.

So people came home and went to work. Is this dementia? What can we do?!!!

Yup, tis the season...

Okay, so first things first: calm down and breathe. And remember the most important things. Does something need to be done? Yes. Does it need to be done by you and you alone? Not likely.

Your first step: educate yourself. If your relative lives alone you will need to do something. Is there an Alzheimer's Association in his or her area? Contact the closest Area Agency on Aging. Or find the ones in your own community. They can direct you to any resources your relative might need. You don't have to figure this out alone!

In fact, you shouldn't. If there are any other family members involved check in with them. Compare notes, compare possibilities, educate yourselves and then decide on a plan of action.

And guess what? If your relative does not live alone there may or may not need to be anything done at all. If no one is in physical danger and there is someone taking care of the absolute necessities (the bills, for instance), the most important thing might be taking care of your own emotional upset. Yeah, it doesn't look good from the outside but, more often than not, people living together overcompensate for each other's difficulties, they overlook the little slips and idiosyncrasies, they do what has to be done and let the rest slide. It's shocking if you haven't seen Nana for a long time but if grandpa still seems to be handling it alright... Do check in but don't freak out if he says they don't need anything.

At least not what they'll accept for now. But they most likely will need help if not outright intervention as things continue to decline. So get help to know what kind of things to look out for, what resources may be nearby, and how you as a member of a larger group (family, community resources, etc.) can prepare for the time to come.

Alzheimer's Disease Cooperative Study

2010-09-28T16:14:00.000-07:00

Image via WikipediaAre you or a family member experiencing the early signs of memory loss? Would you like to participate in research looking to put an end to Alzheimer's Disease?

The newest thinking in the future of Alzheimer's treatment is to be able to detect changes in the brain in the earliest of stages, long before full-blown Alzheimer's symptoms appear. Reversing these brain changes -- or the behaviors or predisposing physical conditions that cause them -- is thought to be the best way to stop Alzheimer's. But the only way to recognize what these changes are and learn more about who is at risk is through the participation of volunteers.

“We cannot end this terrible disease unless we know more about it,” says Dr. Paul Aisen, M.D., director of the Alzheimer’s Disease Cooperative Study (ADCS). “That is where the amazing volunteers, their friends and their families can make the difference in our success.”

If you, a friend, or a family member is experiencing early signs of memory loss, you may be eligible to participate in a groundbreaking ADNI GO study. Please visit http://adcs.org/Studies/ImagineADNI.aspx or call the Alzheimer’s Disease Education and Referral Center at 1-800-438-4380 for more information on study sites in your area.

Gifts for Alzheimers Disease Caregivers and Families

2010-08-30T08:21:00.000-07:00

Etsy.com is an online marketplace for handmade items made by artists from all over the world, but particularly in the United States. There's a great community of people there and one of them created this Treasury (a curated show) of gifts made to remember, honor or support someone with Alzheimer's Disease or a related dementia. My book The Spiritual Journey of Family Caregiving was included because I sell a variety of things on Etsy. I thought that was very nice. http://www.etsy.com/treasury/4c582503979b8eefecf908e5/compassion?index=2

Announcing the Release of a Good Book

2010-07-31T11:44:00.000-07:00

One of my old books! Changing the World One Relationship at a Time: Transformational Listening for Mutual Support & Empowerment came out in 1998 through Crossing Press. It went out of print years ago but copies were still available through Amazon.com. Recently, though, I've heard that those copies have become hard to come by. So today I'm announcing that it is in print again both as a print-on-demand book for $16.49 or as an e-book download for $8.59 through Healing Communication Press.

Here's what other people had to say about this book when it first came out:

Want to change your life? Get together with a trusted friend and spend an allotted amount of time each week focusing on truly listening to one another. “Changing the World” teaches readers the needed skills for connecting with others, starting on a personal level and advancing to the community and the world beyond. —Sandra I. Smith, Midwest Book Review

I highly recommend this book. Karas provides tools we need to improve the quality of our lives. Her examples, exercises, and meditations teach us how to listen constructively which leads to improved health, happiness, and a sense of well being. —Barbara Hoberman Levine, author of Your Body Believes Every Word You Say

And this is from the back cover:

When the cost of counseling is higher than ever and insurance is less likely to cover it, when people are searching for community and healthy practices to sustain it, the need for simple easy-to-do peer counseling and relationship skills are more important than ever. The re-release of Changing the World One Relationship at a Time: Transformational Listening for Mutual Support & Empowerment could not have come at a better time. Spiritual counselor Sheryl Karas M.A. has written a clear concise and highly readable book to help couples, families, friends and communities help each other through troubled times.

I highly recommend this book for the task of family caregiving in the beginning stages when things are still going well. It helps to create supportive partnerships right from the start—trying to implement a program like this under duress isn't really the best time to start. But for most caregivers the process of easing into caregiving is a more gradual one. Put a great support system into place early on and you'll never regret it!

The book will teach you:

Basic attentive listening skills
Approaches for effectively working with emotional issues
How to stay centered around other people’s emotions
How to work with personal and societal projections
How to create your own support groups
Exercises, guided meditations and more

Author Bio: Sheryl Karas M.A. has a Masters degree in Transpersonal Psychology and 30 years of experience providing informal counseling in a variety of settings. From 1984-1998 Sheryl was a practitioner of Re-evaluation Counseling, a form of peer counseling (co-counseling) where participants learn to exchange mutual support. She taught co-counseling classes and later went on to teach the teachers and certify new ones. When Sheryl developed a more spiritual perspective some of the practices of Re-evaluation Counseling no longer seemed to fit. Changing the World combines some of the most accessible techniques from Transpersonal Psychology with the peer counseling instruction she taught before.

Click here to buy the book now!

Health Care Reform Passes

2010-03-22T20:37:00.000-07:00

It's not anywhere near enough but here are 10 reasons to celebrate anyway:

10 Things Every American Should Know About Health Care Reform

1. Once reform is fully implemented, over 95% of Americans will have health insurance coverage, including 32 million who are currently uninsured.

2. Health insurance companies will no longer be allowed to deny people coverage because of preexisting conditions—or to drop coverage when people become sick.

3. Just like members of Congress, individuals and small businesses who can't afford to purchase insurance on their own will be able to pool together and choose from a variety of competing plans with lower premiums.

4. Reform will cut the federal budget deficit by $138 billion over the next ten years, and a whopping $1.2 trillion in the following ten years.

5. Health care will be more affordable for families and small businesses thanks to new tax credits, subsidies, and other assistance—paid for largely by taxing insurance companies, drug companies, and the very wealthiest Americans.

6. Seniors on Medicare will pay less for their prescription drugs because the legislation closes the "donut hole" gap in existing coverage.

7. By reducing health care costs for employers, reform will create or save more than 2.5 million jobs over the next decade.

8. Medicaid will be expanded to offer health insurance coverage to an additional 16 million low-income people.

9. Instead of losing coverage after they leave home or graduate from college, young adults will be able to remain on their families' insurance plans until age 26.

10. Community health centers would receive an additional $11 billion, doubling the number of patients who can be treated regardless of their insurance or ability to pay.

------------------------------

Sources:

1, 2, 3, 4, 5, 6, 10. "Affordable Health Care for America: Summary," House Energy and Commerce Committee, March 18, 2010
http://wwwd.house.gov/akamaidocs/energycommerce/SUMMARY.pdf

3. "Insurance Companies Prosper, Families Suffer: Our Broken Health Insurance System," U.S. Department of Health and Human Services, Accessed March 22, 2010
http://healthreform.gov/reports/insuranceprospers/index.html

4. "Affordable Health Care for America: Health Insurance Reform at a Glance: Revenue Provisions," House Energy and Commerce Committee, March 18, 2010
http://wwwd.house.gov/akamaidocs/energycommerce/REVENUE.pdf

5. "New Jobs Through Better Health Care," Center for American Progress, January 8, 2010
http://www.americanprogress.org/issues/2010/01/new_jobs_health.html

8, 9. "Proposed Changes in the Final Health Care Bill," The New York Times, March 22, 2010
http://www.nytimes.com/interactive/2010/03/19/us/politics/20100319-health-care-reconciliation.html

10. "Affordable Health Care for America: Health Insurance Reform at a Glance: Addressing Health and Health Care Disparities," House Energy and Commerce Committee, March 20, 2010
http://docs.house.gov/energycommerce/DISPARITIES.pdf

------------------------------

From MoveOn.org

"Mom's always been this way. It's just worse now."

2010-03-08T12:34:00.000-08:00

I can't tell you how many times I heard that statement from the adult children of a dementia patient struggling with the issue of whether Mom actually had dementia or not. The behaviors were already there -- the constant anxiety about insignificant things that had progressed into paranoia, the constant nattering chatter that no longer had any censor on it at all or, conversely, the tendency to be depressed that had progressed into a complete withdrawal from the world. And now that I live in close proximity to someone who exhibits these characteristics I understand more fully the underlying question: if these obvious signs of dysfunctional behavior were there all along to a lesser extent is this really dementia? And if it is dementia were they always suffering from dementia? As a Family Consultant it led me to question what dementia actually is. And what, if anything, could have been done about it from a behavioral point of view?

There have been multiple studies that have correlated the incidence of Alzheimer's Disease with a much higher then average incidence of depression or excessive anxiety earlier in life. There is also fairly conclusive evidence that people who stay happily actively engaged in life and who use their minds more regularly are more likely to keep their ability to function -- even with the supposedly tell-tale indicators of Alzheimer's Disease that are used to give a more precise "diagnosis" after death. The famous Alzheimer's Disease Nun study is a good place to learn more about that. I was fairly convinced as a Family Consultant that something could have been done, should have been done, but the "what" eluded me then, continues to confuse me now.

On what level is one allowed to confront a family member with the news that not only are they driving everyone around them crazy, in a very literal sense they might be driving themselves crazy, too?!!! Well, I don't have an obvious answer to that -- and when it's progressed too far, it's in many cases too late!

Perhaps that's why I'm sharing this with you right now. I don't have to do this. I no longer get paid to write these things. But maybe, just maybe, if this message is put out there well enough and often enough by people who do care the idea will get across. Having a happy healthy attitude makes for a better life. Cultivate yours. Help your friends cultivate theirs. And do what you can in your family of origin, too.

Maya Angelou on Aging

2010-02-28T09:42:00.000-08:00

In April, Maya Angelou was interviewed by Oprah on her 70+ birthday. Oprah asked her what she thought of growing older. And, there on television, she said it was 'exciting...'

Regarding body changes, she said there were many, occurring every day.....like her breasts. They seem to be in a race to see which will reach her waist, first. The audience laughed so hard they cried. She is such a simple and honest woman, with so much wisdom in her words!

Maya Angelou said this:

'I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.'

'I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights.'

'I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life.'

'I've learned that making a 'living' is not the same thing as making a life.'

'I've learned that life sometimes gives you a second chance.'

'I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw some things back...'

'I've learned that whenever I decide something with an open heart, I usually make the right decision.'

'I've learned that even when I have pains, I don't have to be one.'

'I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back...'

'I've learned that I still have a lot to learn...'

'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.'

It's Time to Fight for the Public Option

2010-02-22T12:28:00.000-08:00

Working for the Alzheimer's Association and then for Del Mar Caregiver Resource Center taught me one thing. If the people harmed most by our inadequate approach to health and long term care in this country don't stand up for themselves there isn't a chance in hell that anything is going to be done about it. We have a chance to create real healthcare reform in this country right now and the choices we make or don't make today are sure to affect future generations for a long time to come.

Unfortunately, as much as I think it would be preferable to have a bipartisan approach to creating real healthcare reform, the current Congress has proven that that's not something they're capable of doing. As soon as the public option was taken off the table I, along with MOST Americans, gave up. You don't negotiate with terrorists! And that's what the nay-saying Republican stonewalling has become. I say let's stop it now!

CREDO is circulating this petition to get the public option passed without Republican approval. If you agree that it really IS time for a change let's send that message to Congress and the president we elected to pass that change together. Without our action nothing can and will be done. President Obama and most of Congress have already given up on the ability to pass a public option but momentum is building to shift that perception. 119 House Democrats and 20 Senators have already been convinced through earlier CREDO petitions to push a public option through over Republican heads. With enough public outcry the rest of the Senate and House may come on board. They'll have no choice if they want to be re-elected in November.

Send a message to your congressmen and women today!
http://act.credoaction.com/campaign/good_vs_bipartisan/?r_by=7864-1886094-mzBw0zx&rc=confemail1

Early Behavioral Indicators of Dementia

2010-02-20T14:16:00.000-08:00

There is a spectrum of behaviors that family members report when it comes to dementia. There's the genetic variant of Alzheimer's that hits relatively early in life and doesn't leave anyone unscathed. The most intelligent competent person in their forties can become completely dysfunctional in a very short few years. That's the worst case scenario and it is NOT the one most people came to me about when I worked for the Alzheimer's Association and Del Mar Caregiver Resource Center.

The more typical situation belonged to the people who became slowly more and more incapable of handling their daily lives, became increasingly more dependent on the people around them, and died usually from some other cause in their 70s or 80s. This is also the most difficult kind of dementia to diagnose and, frequently, no definitive diagnosis becomes available until the behaviors become so intolerable or frightening to someone else that there is no other recourse except to intervene.

People would come to me reporting all kinds of troubling behaviors before their loved one was willing to seek medical attention. "What does it mean when I see that my mother-in-law is letting the bills pile up?" "I went to visit my parents when I went on vacation and I could not believe the state of their refrigerator!" "My grandmother stays in her bathrobe all day and spends the day muttering to herself." "I popped in unexpectedly on my father the other day and found him sitting in his underwear in the dark! He said there was nothing the matter with what he was doing and to leave him alone. Is this the beginning of dementia? How do I know? What do I do?"

I'd do the best I could with the information I had but the truth is there are no hard and fast answers to these questions. And now that I live with some elderly people exhibiting a few of these behaviors themselves I know that my best thinking on the subject was probably wrong! Yikes!

Some people, all of us perhaps, lapse into lazy behaviors when no one is looking. At a certain age, you've probably heard people say, one of the perks is not caring what other people think. I think now that that combination, combined with a lack of desire to change things when family arrives, was behind most of the early behaviors worried family members used to report. That's not to say that these behaviors are not early indicators. They certainly are! But people with depression act the same way and elderly "eccentrics" who don't want to play social games anymore certainly do. Take these people to the doctor and you won't get a definitive diagnosis of any sort of dementia in the early stage. Unfortunately, study after study does tend to show that high levels of depression and social isolation are two of the key determining factors in whether a person develops the disease. And that's the reason I wanted to write about this today.

Can you help a loved one who is depressed, feels cast off by society, alone and scared? Can you help someone who refuses to accept help? Sometimes you can help bring a lonely loved one back into the fold. Sometimes you have to let go of the outcome, extend a helping hand where it is allowed, and hope that it makes the quality of their lives (and yours) better as far as you're allowed to go.

Being Still, Letting Go

2009-11-06T11:23:00.000-08:00

When life is chaotic it can feel extremely difficult to find a calm center to relax into and let go. I think this painting I did recently epitomizes that. Too much happening to feel "meditative". But it is a mandala. Breathe in and focus on the very center.

Or close your eyes and begin again.

The mandala above is a challenging place to begin a focused meditation practice. I can't do the practice I suggested above with this piece myself. But that's why I chose it for this article. Living with someone with dementia is like that. The chaotic disrupting influence of the dementia patient's fractured thought process and the worry, frustration and seemingly endless series of problems creates a backdrop that screams for attention even when you find a few minutes of "peace" just for yourself.

Some things in a caregiving situation take a lot of time to work through. Throughout my book I offer lots of suggestions caregivers can do to make things go better. But what about those things that can't be improved? You know what I'm referring to: the endless repeating questions that you just answered 10 minutes ago, finding the roll of tin foil in the refrigerator along with the unwrapped meat that mom insisted on putting away, the obsessive paranoia, the accusations that someone broke in and stole the purse you know will someday show up someplace weird. The list gets longer all the time and no well-meaning guidebook or caregiving professional has an answer for how to deal with it all.

It's natural to obsess on a situation that is this upsetting. And if there IS something you're overlooking -- maybe Mom's medications need to be adjusted? -- it's wise to get a professional opinion.

But, I know, sometimes you've done everything you can think of to do and the craziness doesn't end. Today I had an insight into this. Just going away, closing the door and obsessing on how much you hate the situation you're in does NOT make it better. :-) Yeah, it was an insight. . . or rather a reminder to be in the present moment. In this perfect moment in time there is no dementia patient in the room. In this perfect moment there is nothing going on that can't wait until someone (not necessarily me) returns.

By really being in the present, I can breathe and return to a feeling of peace myself.

Everyone Has Value, Just Breathing

2009-10-19T11:47:00.000-07:00

An old counselor friend of mine from India, who I lost touch with years ago when she moved back, had an enormous impact on the people she worked with when she lived in the United States. Her insight into the U.S. national psyche is that most people she met didn't feel good about themselves. Even worse, this was amplified if they were sick, disabled, unemployed or struggling. She took to asking her clients to lie down while she sat beside them and held their hands. She would tell them to just breathe and when they would protest that they weren't getting "enough work done" in their session with her she'd tell them to think of themselves as a young infant -- a newborn, unable to move or talk, or even lift their own head. And she would say

"Did your mama love you any less for that? No! She was so excited to have you, to welcome you into her life, to just hold you and look at you and smell you! She saw you as a perfect miracle when you were just born and unable to do anything but lie there, breathing. And she was thankful for that."

"Just breathe. You are of value to the world just being here. You are a miracle. You are loveable. You are welcome on this planet. You belong."

"Think of yourself as that little newborn. You are still that same child. And nothing changes that except what you have been taught to believe."

In this video is a graphic example of how valuable a being can be just lying there breathing. It's a tribute to Baxter, a dog who brought joy and comfort to people at the end of their lives even though he couldn't do anything anymore himself but lie in their beds, be held by them and lick their faces.

He died on Friday, October 16, on my birthday. I didn't know him personally but I know he is deeply missed.

Apologizing for 43,000 Deaths

2009-10-04T19:19:00.000-07:00

Codependent No More

2009-09-19T23:03:00.000-07:00

In my work as a family consultant I frequently thought my clients could benefit from Melody Beattie's best-selling book Codependent No More. It was written with family members of alcoholics in mind but, really, anybody who lives awhile with a person prone to demented behaviors whether it's caused by alcohol, drugs, mental illness or a dementing illness is in the same boat. We're all attempting to cope with the chaos and pain such a situation causes and we frequently develop some pretty intense coping behaviors in which all our attention gets sucked into obsessing about the person who is creating it. It's natural, it's human but it's damaging just the same.

I recently reread this book after not thinking about it for many years. It still holds up and I recommend it for the chapters on how to focus on yourself without guilt and work with your own anger, grief and pain. You may not be able to walk away as might be recommended for someone dealing with an alcoholic. Caring for a person with a dementing illness typically isn't thought of the same way. But please do take seriously the importance of cultivating detachment, a sense of humor, and time for yourself. It makes all the difference!

What Exactly is the Public Option?

2009-09-09T20:27:00.001-07:00

Codependency as a Precurser to Dementia

2009-08-26T09:53:00.001-07:00

This may be a controversial article, especially since as far as I know nobody has done studies on this phenomenon to date. Certainly, living with someone with dementia can create codependency. That was the heart of my practice when I was a caregiving consultant. But nobody that I know of has written about the case in which the disease goes the other way around.

First, let's try to define codependency. This is a term very familiar to those in Alcoholics Anonymous and Al-Anon to describe the dynamic that frequently occurs between the alcoholic and those who have to live with one. Basically, the codependent person gets trapped in a system of trying to compensate for the alcoholic's behavior in a variety of ways—everything from constantly monitoring how much a person drinks to covering for them when they've drunk too much. It takes constant vigilance to cope with being in a relationship in which a significant portion of the day is spent avoiding or coping with the aftermath of giving in to an addiction. There's no criticism intended in this description. But the inevitable upshot of the dance that occurs enables the alcoholic to continue their dysfunctional and dangerous behaviors because they never wind up taking responsibility and living with the consequences of their own actions.

Unfortunately, the codependent is usually just as addicted as the alcoholic. They are addicted to being needed, to being the competent one, to being the one who "really is in charge", etc., etc. And it's not just family members of alcoholics who wind up adopting these addictive coping behaviors. Anyone who grew up with a parent with any kind of disorder that made them undependable or even a little dangerous will have tended to develop a number of behaviors meant to help control the crazy circumstances they live within. Children of abusive parents and those with mental illness are a prime example. "What do I have to do to keep dad from hitting me?" "How do I handle the fact that mommy isn't making us dinner?" Children who live in these circumstances can become super-competent. That's the good part. The bad part is that they become terrified to do anything else.

A codependent personality always has their attention on someone else. In my caregiving practice I would say "How are you?" and nine times out of ten whoever was sitting in front of me would tell me about their Alzheimer's patient instead. Seriously. I'm not exaggerating. I met with hundreds of family caregivers in a year. Most of them couldn't answer the simple question of how THEY were without being asked twice.

Every once in awhile a caregiver would say "My mom was always the one everyone depended on. She was the caregiver for the whole family. She took care of both her parents until they died. She took care of my mentally ill sister. She took care of our grandparents and my cousin Mary, too!" Now she's finished with her caregiving duties and what happens next? She can't even enjoy it because now she's been diagnosed with dementia, too!"

The first time I heard that story I felt bad for the person involved and thought "how terrible!" The second time I heard it from a different caregiver I thought "that's sad and how interesting that it's happened here, too." Then I heard it again and then a fourth time. It wasn't the most common story I heard. THAT story was "Mom was perfectly alright until dad died!" But it was a variation that made me wonder.

Right now I'm living with someone who has such acute codependency behaviors that she worries and talks about other people —and ONLY other people—all day long. ALL DAY LONG ALL THE TIME. She does not have Alzheimer's disease. But she can't concentrate on her own interests and things she wants to do at all. She leaves food on the stove to burn while she takes care of a stranger's problems on the phone—even a telemarketer gets her undivided attention. She loses things every day. She forgets things that she "cares" about all the time. But not other people. Other people are the only thing in her view.

If you were to step into this situation and see it from the outside you would see behaviors that smack of dementia. But her family members say, no! She's been this way most of her life. She's always been the caregiver. It's just a little worse now because she doesn't actually have a person who really needs caregiving these days and she does have a little age-related memory loss that contributes to the problem now. She WANTS to be caregiving! She's constantly getting into other people's business and attempting to do so until they get mad and tell her to go away. And she can be extremely engaged and competent when she gets set loose. But without it. . . she doesn't know what to do, she gets a little batty, she withdraws her attention from life and acts out addictive behaviors like constant TV watching on her own. And she acts like a little girl who needs watching over. . . which was probably the truth when she believed she needed to do the caregiving she no longer knows how to do without.

It's what I suspected when I worked for the Caregiver Resource Center. I'm seeing it acted out in front of me on a daily basis now. Give a person with "dementia" a job where they feel like they can take care of someone else and many of them come back to life. I heard about that time and again. I only wish I knew how to help this person and those of you dealing with someone like them now.

Think Healthcare Reform is "Too Expensive"?

2009-08-21T11:53:00.000-07:00

Think again.

Get the Facts on Healthcare Reform

2009-08-13T20:21:00.000-07:00

Note to spammers who intend to leave vicious comments about the evils of Socialism and "Obamacare": I moderate all my blogs. Don't waste your time here.

Healthcare reform is THE most important thing on the national agenda right now. I burnt out on my last job working with caregivers of people with Alzheimer's and other dementing illnesses NOT because of the sadness of illness and death. It was the stories of people going into bankruptcy and facing financial devastation in addition to the heartbreak they were going through that got to me. Now the job I had at that agency might not even exist anymore. The California legislature just cut that agency's funding by 73%! Now even the inadequate level of care we were providing there won't be available. We need reform NOW!!

Click this link to learn the facts, share it with as many people as possible, and stop the promoting of hate and misinformation.

It's Time for Healthcare Reform!

2009-07-21T12:31:00.000-07:00

In my email today I received an email from an organization called "Organizing for Healthcare" that included the video on this blog. I know not everyone who comes across this blog is an Obama supporter but organizing to defeat healthcare reform in the name of "crushing" Obama is as low as it goes.

I used to work in the healthcare field as a family consultant for the Alzheimer's Association and later for a nonprofit caregiver resource center in Santa Cruz, CA. By the time I left that line of work I couldn't stand listening to the stories anymore. . . but what I couldn't handle is NOT what you might think. I could listen and support people who were seeing their family members and friends deteriorate, lose their minds, and die. I could handle the disease and death. What I hated about this work was the devastating effect taking care of their loved ones had on these people because of the horrible lack of financial and hands-on support we allow to be acceptable in this country. Elderly people were doing 24-hour a day caregiving without back-up! You can't do that as a young person. There comes a time when you NEED to sleep, eat and do basic tasks of everyday living. You can't do this kind of caregiving without support!

And paying for help is more than most people could stand. People were in my office every day begging me to tell them how to keep from going bankrupt and I didn't know. That's what got to me. The utter disregard for human value and human life.

Meanwhile the drug companies who supply the pharmaceuticals their family members were talked into thinking they needed at several hundreds of dollars a month are getting fat. The pharmaceutical industry is one of the top 2-3 most profitable industries in the world, reporting profits of 100s of billions of dollars per year. Profit, by the way, is what is left AFTER a company pays for the research and development the drug companies claim they need to be paid so much for. Don't be fooled by the games they have been playing. Record profits were reported after Bush signed the most recent Medicare drug benefit "reform" bill. That's how insane our country has been—steal from the poor to fatten the already unbelievably rich! This is worse than insane—it's criminal!

It's also a big piece of what has been bringing the economy to its knees. Big multinationals allowed to run amok, taking everything they can get without regard to anyone else. 100s of billions of dollars of profit—every year—while people we care about are losing their homes and having to make the choice between paying for medications and having enough to eat.

It's time we all stood up and did something about it.

Age Related Changes and Memory Loss

2009-05-23T11:02:00.000-07:00

When I was a Family Caregiving Consultant people who had not lived with their elderly relatives in years would come to me in a panic about behavior that smacked of dementia. They had a family gathering at the house, came for a more extended visit, or even needed to move in together for a particular period of time, and what they saw frightened them.

Now my partner Paul and I are temporarily living with his elderly parents. Neither one has Alzheimer's Disease. Both have been getting by but what we're seeing is throwing my earlier client contacts into a different light.

I remember hearing: "My grandmother stays in her bathrobe almost all day long!"

Yep. Occasionally, I do, too, on my day off when there's no one around to see me do it. If grandma has been living on her own and is "on her day off" all the time, why shouldn't she do what makes her feel comfy and cozy?

"Mom takes hours to get dressed or make dinner!"

Yep, why not? There's nothing to hurry for.

Now, I'm not going to say we haven't seen behavior that completely freaks us out. One of Paul's parents has judgment lapses that would get her declared "incompetent" in an instant if this wasn't a lifelong pattern of decision-making. "She's always been like that!" I hear again and again. "It just happens more now. She doesn't care about those things and never has!"

In context, it's just a progression of the same old thing. Jumping in fresh or after a long absence, the progression make no sense. It's crazy! It's "dementia"! We have to do something!

And maybe you will have to intervene sooner or later. After all, there has been an increase in these behaviors. And there is at least age-related memory loss.

But trust me, the parents won't feel that way. They've been compensating for these changes for a decade or more. "We've gotten this far," they think. "What the hell are you so worried about? Big deal, if I leave a pan on the stove. Haven't you ever done that? Big deal, if I go to a party and forget my teeth! I've done it before! And yeah, I even bounced a check or two this month. Stop snooping into my business. (You have no idea how many times I did that when I was younger, too!)"

Most people's parents handle their aging with an acceptance and flexibility their children can't imagine. Things change gradually, they adjust, they make do, they adjust some more. But then there's one last adjustment and things fall apart. That's when the kids can step in. It's nice if you can plan ahead for that. It's even better if the parents will help you help them before things fall apart.

But they have to be willing to allow you to be involved. Before then, it's a terrible interference into a life that's being independently, and even somewhat gracefully, lived.

Conflict Resolution and Family Caregiving

2009-04-11T10:32:00.000-07:00

I used to work as a Family Caregiving Consultant for the Alzheimer's Association and later for Del Mar Caregiver Resource Center in Santa Cruz, CA. Conflict resolution was one of the most challenging aspects of long term family caregiving -- so many factors to be worked out, and such committed and heartfelt views. Here are some excerpts from an article I wrote on the subject back then. A new version of this can be found in my latest book, The Spiritual Journey of Family Caregiving. The book can be found both on my own website and though my shop on Etsy.com.

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Sometimes when I work with families I think of my clients as being on a see-saw. One person in the family voices a very strong opinion about what HAS to happen and another family member insists in an equally loud voice that he or she wants the opposite. The balance of power wildly swings back and forth until one person falls off and the other person (merrily?) goes on their way doing exactly what they want without interference. (Then they come to complain to me that no one in the family "gives a damn" about the person they're taking care of so they have to do everything!)

When I was a kid my friends and I liked to play the see-saw game where the idea was to learn how to keep the see-saw in a balanced position. This was possible but very hard to maintain sitting way out at the ends. But as we learned to move our seats closer and closer towards each other we would eventually get to the point where we could sit in balance with almost no effort at all.

As an adult I forgot the see-saw game and I certainly never applied it to the game of life; but if the laws of physics are, in fact, the laws of nature, then why wouldn't they apply to interactions between people and not just interactions between objects? Let's explore that concept in the arena of conflict in general and then apply it to family caregiving. I'll start with an example from my life.

When I was in my early 20's I had a conversation with a wise elder of the Wampanoag Indian tribe in Massachusetts that made a lasting impression on me. I wanted to change the world, was a staunch vegetarian, and believed that how I lived and the food I ate (or didn't eat) was an integral part of my overall mission. Yet I couldn't understand why my family and many other people rejected my behavior with such vehemence —after all, I was on the side of what was right and good, wasn't I?

Manitonquat said he admired the motivation behind my choices but believed strongly himself that the extremity of my stance was counterproductive. His choice was to teach the sacredness of all things, ourselves included, and to help people feel grateful to the animals and plants that gave their lives for our sustenance. He wanted to help people love the earth and make sure to treat it well regardless of what one ate. He believed that if he could help get mainstream Americans, through love, to only eat as much meat as they needed and to start by experimenting with other yummy protein sources one day a week it would have a much greater impact than converting a small group of people to become total vegetarians (which might not be a sound choice for the planet, in his opinion, anyway).

Now, of course, I didn't really understand what he was talking about until many years later when his words came ringing home. I chose to give up being a vegetarian to cope with serious health concerns and couldn't believe the condemnation I heard from my vegetarian friends for "giving in." Their polarized stance made me feel unloved and angry because I realized if they couldn't support me in a life choice that had an obvious and immediately beneficial impact on my personal well-being, how could they ever expect anyone else to respect their (my old) perspective about what was best for the well-being of the planet (i.e. all of us)? The damage inherent in polarized politics became painfully apparent to me in that moment, as it has quite often in recent times. Now, as a family consultant, I see the impact polarized positions create in the lives of caregivers and, ultimately, in the lives of the people they care for.

On the polarized ends of the see-saw are always two people who are absolutely commited to what they believe is right; yet, it is a rare moment when I see people acknowledge that their commitment is a beautiful thing they have in common! In fact, the reason people often take polarized stances is to counterbalance an extreme position on the other side. Their commitment to justice and fair play, if not love, is what creates the imbalance AND it is that very commitment that can turn things around if they apply the laws of nature skillfully.

Remember, the see-saw game? The way to create balance easily without taking extreme positions is for both people to move closer together. You have to look for sources of commonality and learn to acknowledge what is right about each other's perspective. This is easier said than done but if people didn't have the goal of making things go well (at least from the perspective they see things from) there wouldn't be an argument in the first place. We all want things to go well -- hooray! -- let's see how that can be done.

The most charged and most typical family argument I see every day is the one around the decision to place mom or dad in a nursing home. One sibling, usually a devoted daughter, insists that mom (it's usually the mother) should get to live at home to the bitter end no matter what it takes while other family members believe a nursing home or residential care facility is a better choice. The one who wants mom at home will often say the others obviously don't care about mom—mom always said she'd rather die than be placed in the nursing homes she remembers from her childhood -- and the right thing, the moral thing, is obviously to keep her at home. The other family members feel condemned—they know mom might have a difficult emotional transition to make—but they also see how full-time caregiving is destroying the life of the one who is primarily in charge and, for a wide variety of reasons, they can't or won't do what little sister has done.

So they express themselves in a polarized way to counter the criticism they feel: "No! You're wrong! You're not doing a good enough job! Mom would be better off with her own peer group with trained professionals taking care of her needs!" They believe this is a loving stance, a statement of how much they do care for their parent, but it doesn't come across this way.

Neither side feels heard, both sides feel condemned and unsupported, and the impasse remains in place. What usually happens is the one who wants mom home insists on doing it no matter what and, because other family members don't agree, she gets no help. The breach in family relationships that happens as a result is often never repaired.

But what would happen if one person came closer to the middle of the see-saw and said, "I hear how much you love mom and how much you are trying to meet her needs. Tell me more. How did you come to believe this is the best solution?"

If one person felt truly heard, loved and acknowledged wouldn't they eventually be curious about why their so very loving sibling believed the opposite? Old family arguments and long-standing roles and dynamics obviously play a role in this but often the simple skill of learning to listen when everything inside is screaming "NO! LISTEN TO ME!" makes the biggest difference. Then, of course, it's important to take your turn so the reasons behind your stance are heard as well but that often has to come second.

Then what? Well, I've seen so many different solutions to this particular impasse I find myself amazed at the levels human creativity can achieve when everyone is in alignment with the highest good of everyone involved. If little sister is exhausted by being the primary caregiver and big sister can't help because she lives several states away but is willing to help pay for a nursing home maybe that money could be used for respite care instead. Maybe younger brother who is too emotionally distraught around his parents to want to be involved can be convinced to handle financial arrangements or caregiving responsibilities that don't involve hands-on care. Some people choose to use a nursing facility but come and take their relative out for a walk or a treat every day. Maybe if little sister met Mary, the friend of the family who LOVES her assisted living arrangement, she wouldn't feel so bad about helping mom adjust to a new home. Maybe if mom visited Mary and joined her for a meal and activity session she would suggest moving herself. (I actually HAVE seen this last scenario many more times than once!) But before any of these possibilities can happen, people have to be willing to move their seats closer to the center of the see-saw.

Buyer Beware! Caregivers Take Notice

2009-03-30T18:01:00.000-07:00

Recently a good friend of mine, an elderly woman we'll call "Mary", was contacted by Wells Fargo Bank. She consented to speak to the "nice man" on the phone right away-- after all this was her bank, could something be wrong? No, but after several minutes of chatting with the person she thought was a bank employee she had been talked into allowing Wells Fargo to deduct $25 a month from her account for an insurance policy she didn't want.

I was there when it happened and said "Mary, why did you do that?! Why would you buy insurance you didn't want?"

"Oh, don't you worry about a thing" she said. "It's free the first month! And when I get the paperwork I'll just cancel it. The nice man said I could do that any time."

"But why would you say yes to this in the first place?"

"Oh," she said. "You know those poor Wells Fargo people have a 'quota' to fill, don't you? If they don't sell so many policies a month they could lose their jobs. I couldn't let that happen!"

I was flabbergasted but she assured me that she would get a notice from the bank and when she got it she would cancel it, so I stashed the experience in my memory bank, in case it should matter some day, and let it go.

Well, the paperwork either never came or didn't look like what Mary had expected. She has a vague recollection of getting something from AIG but she "knew" she hadn't bought anything from them so she threw it away. Three months later both of us had forgotten all about the insurance buying incident and Mary found herself unable to buy groceries at the end of the month because $50 she counted on was "missing" from her account.

Now, luckily, Mary is not so demented that she didn't notice what was wrong and immediately called the bank. She only has age-related memory loss and perhaps some misguided judgment. Wells Fargo promised to cancel the policy and, hopefully, that will be the end of it. But what if Mary wasn't that on top of her bank account? Could this even happen to you?

Singing at the Threshold

2008-10-16T14:19:00.000-07:00

I recently got an email from the Threshold Choir, a wonderful singing community I used to participate in founded by Kate Munger in El Cerrito, California. Choirs have now formed in many places throughout the United States and Sussex, England and new ones are being created all the time.

What makes The Threshold Choir special is that it was specifically formed to comfort the sick and dying. Choir members learn songs in 2-4 part harmony and "perform" them (offer them) at people's bedsides. They sing in pairs or in small groups at hospices, hospitals, nursing homes, and private homes by the invitation of the family or the person's caregivers. Sometimes the family is present when they sing, and they sing as much for them as for the person who is in bed. The service is provided for free although donations are gratefully accepted.

It's a wonderful experience to be sung to like this. All Threshold Choir members get to have the experience themselves and when I was a member of the group I remember it as moving, extremely peaceful and profound.

Here's a lovely video I found on Youtube featuring members of the choir I used to sing with in Santa Cruz. I still find it inspiring work.

24 Hour Caregiving

2008-10-13T21:40:00.000-07:00

I recently did a follow-up interview with caregiver Joan M. who took care of both of her parents until they died this past year. Joan did 24-hour caregiving for her father in the last few years of his life after deciding to take him home from the nursing home. She feels like this is one of the best decisions she ever made even though the road was rough and difficult. These are some of the insights she shared with me:

24 hour caregiving seems impossible but it IS doable if you keep several things in mind:

1. You must be committed and determined. You must know without a shadow of a doubt that come hell or high water THIS is what you are determined to do. That kind of commitment and focus unleashes energy that would otherwise be dissipated in indecision and resistance. All your creative forces can then come together and be focussed on the task at hand.

2. You must be organized. You need to create a schedule, assign tasks and be able and willing to follow through.

3. You need to have at least one other person (or more) who will take on some of the tasks and can be counted on to do what they say they will do.

4. You need to stay in the present moment so you can respond appropriately. Things change. What worked yesterday may not work today. Expect change to happen and work with it instead of trying to keep things the same.

5. Whatever services you can pay for are worth the money so don't hesitate to buy the help you need whenever possible.

One of the problems Joan experienced was anger with her sisters because they wouldn't help her with their dad. This is what she wanted to share with other readers about that :

"I realized how many times it interfered with the way I caregave at certain times. I ended up resenting my task at hand. Holding it in, getting high blood pressure to the point of a heart attack. Then being no good to anyone! I remember you telling me once "It is your choice" and I politely agreed, but really thought - NO IT'S NOT, THEY PUT IT ON ME AND I HAVE TO DO IT. That's what interfered with the free flowing energy that comes from caregiving. I didn't realize I wouldn't have had it any other way. It WAS my choice - it is who I am and what I believe in. Take away the family dynamics and old crap from the past and look into your heart of hearts and decide what you can live with. I went to the convalescent hospital to visit Dad during rehab a couple of years ago. For me that was enough, I wanted him home. I can't be mad at anyone else for not feeling like I did."

This blog was an excerpt from the book The Spiritual Journey of Family Caregiving. Buy it online here.

Losing Perspective by Compulsively Trying Harder

2008-09-28T20:49:00.000-07:00

Take a look at your hand and pretend that it represents a problem you are having. Now put your hand (your problem) one inch or less away from your nose. What can you see? Not much besides your problem! In fact, if you're like most people you probably can't even see all the edges of the problem, never mind a solution. But if you put your hand down and take in the wider view, you can see the rest of the room and the view outside the window. Your life gets bigger and encompasses more possibilities, the problem seems less overwhelming and you can automatically breathe more deeply which reduces your stress and anxiety.

Caregivers of people with brain-impairing illnesses often find their lives reduced to nothing more than taking care of that other person. When I ask how they are or what's new nine times out of ten my clients respond by telling me how their patients are. I have to persist in getting my clients to open their focus wide enough to even include their own health.

I understand this. I'm the same way! The only thing in my life is the problem I'm having and if it can't be resolved right away I just try to focus harder. I try to control what's going to happen because the crisis makes me afraid. I think about the problem constantly, turning it over and over in my mind attempting to figure out what couldn't be figured out before. I reject proposed solutions out of hand if they don't match my imagined vision of how things "have" to go and then chastise myself for supposed "missed" opportunities. I'm damned if I do, damned if I don't because clearly if things aren't going the way I want them to after all this time there's something I must have done wrong and, therefore, I ABSOLUTELY MUST TRY HARDER! And don't you try to distract me away from this intense focus. I KNOW I'm right to be trying so hard because -- can't you see? -- I obviously haven't succeeded yet! The problem's still here!

Can anyone live a satisfying life like this? Sometimes you just have to take a break.

There are people with cancer who somehow continue to live satisfying lives. I always find their stories fascinating because if I were in their shoes I know I would frantically put all my attention on surviving. Yet I recently read a wonderful story about a woman with a recent cancer diagnosis who opened my eyes because she started out doing exactly what I would do. She researched all the latest conventional and alternative therapies, she changed her diet, started exercising, did visualizations and worked very hard to control her feelings because she read that she "couldn't afford a single negative thought." Her life became reduced to her illness and what she was doing to combat it.

Then one day she woke up. All her time was consumed with surviving but what was she surviving for?

It suddenly occurred to her that she had to put her illness into the context of a much wider life - that if she had a reason to live and spent more of her time doing exactly THAT she at least wouldn't have wasted the time she had left. So she took a break and went on a healing retreat where she could be cared for and take some time to rest, meditate, relax and dream. She asked herself the question: since she didn't know how much time she had left (and nobody does know how much time they have) how did she want to spend that time? What made her heart sing? What gave life meaning? How could she leave a legacy or make a difference in someone else's life? What did she want to remember on her death bed that she hadn't experienced yet?

She didn't give up her cancer-fighting protocol but she now saw these activities as a beginning in making her life happen. The steps she took to deal with the cancer slowly started to take up less of her time as she started to shift her attention to what gave her life meaning. Some of her anxiety and fear faded away -- she was too busy focussing on the beauty, wonder and intensely interesting activities of the present moment -- and her enjoyment of life increased. The tumor has not changed size -- at least not yet -- but it does seem a lot smaller in her psyche. It doesn't really matter how the story ends. We don't know yet whether she'll beat this scary monster or not. But she's bigger than that. Her existence is shaped by her illness but it encompasses more life, more dreams, more of who she is and that makes all the difference.

We can't always control what happens in life. Earthquakes happen, our lives get disrupted and we have to spend time picking up the pieces and making new choices instead of doing what we thought we most desired. The roof falls in. Do you walk away and start over somewhere else or do you hold your ground and rebuild? The parent who has abused you all your life needs caregiving assistance. Do you hire people to help her and feel guilty because you're not there or do you do the work "like a good daughter" while she continues to make your life hell? Your loving partner has a brain injury from which he will never recover. After the initial crisis has passed, do you ask for a divorce or stay by his side even though he will never be able to be a real partner for anyone ever again? These are not easy questions with straight forward answers. Neither are they situations where you just do what needs to be done, solve the problem as quickly as possible and get back to your old life. There are moral struggles, practical implications, sometimes heartbreaking consequences no matter what you do.

Sometimes the answer is to step back. Take a break, get a fresh perspective.

Ask yourself what gives life meaning, what makes it worthwhile and, if possible, try to find ways to incorporate your highest values into the life you have now. Given what has happened how do you wish to respond? What are your priorities in this life situation? How do these priorities fit with your deepest values, hopes and dreams? This has nothing to do with "shoulds" and moralistic expectations. It has nothing to do with what you hoped to have in your life at this time. It's about what matters in the present moment and what -- over time -- you want to work towards.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. If you like what you read on this site, why not buy the book? You'll be glad you did!

How To Help A Lonely Elder

2008-09-21T20:46:00.000-07:00

This info was written for people in Santa Cruz, CA but there's enough good suggestions here to help you find similar possibilities in your hometown, I'm sure:

Everyone feels lonely from time to time but the elderly are at a greater risk because most of their loneliness comes from long established habits combined with the loss of longtime friends and companions.

The key to breaking isolation is to very slowly and gently add activities that get the lonely person into the presence of others. In addition to extra contact from existing family and friends, start with activities that are easy to participate in such as church services or special interest classes. Senior centers offer a variety of activities especially geared towards seniors but Santa Cruz is also rich in adult education opportunities ranging from Parks and Recreation classes to community education courses at the University or Cabrillo College. If travel was always a source of pleasure try group tours or day trips. If the person enjoys reading try the public readings and book signings presented by local bookstores. If the person used to gain pleasure by caring for others (children or a spouse) consider volunteer opportunities with a social service agency or child care center. Even a part-time job can make a difference.

For very frail or housebound seniors, an adult day program that includes transportation and medical supervision might serve the purpose. (In Santa Cruz, try Elderday 458-3481 and Cindy's Celebrations 479-7509). If the person truly can't or won't leave the house, it is possible to arrange for a volunteer or paid companion to visit there. Try a Friendly Visitor program (427-5070) or Senior Companion (475-0816 ext. 10). Many others find that what they need most is to live with other people -- try assisted living or retirement communities or rent out a room to another senior citizen or college student (Senior Network Services Shared Housing Program 462-6788). In Santa Cruz it is even possible to try out having a housemate for a very short time by offering a room to a visiting professor or foreign exchange student for one semester or by providing space for a Shakespeare Santa Cruz performer for the summer. (458-3506)

Loneliness May Be Hazardous To Your Health

2008-09-16T20:39:00.000-07:00

Social isolation and loneliness is a major contributing factor in all kinds of illnesses. A famous study exposed paid volunteers to a cold virus and then recorded how many actually came down with symptoms. It was found that those who described themselves as more lonely or isolated were far more likely to get sick. Other studies have shown that loneliness increases the risk of heart disease and cancer and reduces the life expectancy of those already diagnosed. A recent article in Science News reported that people who live alone are 50% more likely to develop dementia than others and that those who live alone and have no friends are 60% more at risk. It is my opinion that loneliness is probably more dangerous than smoking, lack of exercise and poor diet combined and there are some physicians who are beginning to agree.

Dr Dean Ornish became famous for his multi-faceted program for recovery from heart disease. It included a very strict diet, exercise, meditation and support group participation. He had tremendous results and assumed that the most important factors were the exercise and diet plans. However, his follow-up research did not bear this out. In his most recent book Love and Survival: The Scientific Basis for the Healing Power of Intimacy he writes that he is now convinced that, although diet and exercise is important to the success of his program, the single most effective factor seems to be the support group. People who feel loved and cared for thrive.

It is theorized that having only one strong social bond isn't as effective as having a variety of social relationships which is why a support group can be so effective. Strong family relationships or church and community ties are equally helpful. So my question to you all today is: how are your friendships and social ties? Is there a way they could be strengthened? Are there social activities you would like to try but keep putting off? Make social activity a priority and see how it affects your life. It's well worth the effort over time.

From my book The Spiritual Journey of Family Caregiving, available directly from me for $14.95 plus shipping.

More Food-Related Tidbits for Dementia Patients

2008-09-13T20:34:00.000-07:00

Sugar and caffeine can contribute to agitation. If this is a problem for your patient try substituting decaf coffee or herbal tea and use a sugar substitute.

Does your loved one have incontinence or mild bladder dysfunction? Try eliminating citrus, caffeine and sugar. Remember chocolate contains caffeine! Try carob instead. (No, it doesn't taste the same but it's better than nothing.)

From The Spiritual Journey of Family Caregiving

Do You or Your Dementia Patient Snack on Crackers or Sugary Snacks All Day?

2008-09-10T20:21:00.000-07:00

Be aware that overuse of sugar and sensitivity to wheat is extremely common and can create dementia-like symptoms in healthy people. Fatigue, fuzzy thinking, mild confusion, water retention, even arthritis can all be exacerbated by dependency on these products.

How do you tell if this is a problem for you or your patient? For two weeks try substituting potatoes, 100% rye bread, rice or other grains for bread and other products made with wheat including soy sauce. Eat more protein and vegetables and use a sugar substitute like stevia or give up sugar altogether for the same time period. If you don't have another health condition creating the symptoms and you are not allergic to anything else you should see a significant change within that period of time.

Be warned! This is not an easy task! Just like any other physical dependency, the body tends to crave the very substances making it sick. Not only that, sugar and wheat are everywhere in our society. Sugar includes honey, corn syrup, maltose, dextrose, maple syrup, jellies and jams, etc. Wheat is in almost everything made with flour. Still, if you find enough substitutes to satisfy the cravings, the increase in energy and clear thinking alone may be the worth the effort.

From The Spiritual Journey of Family Caregving. Buy it now directly from the author.

Is it possible to prevent Alzheimer's Disease and Reverse Early-Stage Memory Loss?

2008-09-06T20:15:00.000-07:00

As soon as people find out what I do they often ask me what they can do to prevent Alzheimer's Disease and other brain-impairing illnesses. There are no definitive answers but in my work as a family consultant I've noticed a few trends.

Many of my clients tell me that their brain-impaired relative was "just fine" until they suffered some devastating emotional setback such as the death of a spouse or other close relative, a change of residence or community, or a forced retirement. Then, what used to look like normal aging blossomed into full-blown dementia.

Why is that? My boss at the Alzheimer's Association always used to say that the disease must have been present before, it just wasn't noticed because there was nothing to bring it to the family's attention. I think it is much more likely that the changes we associate with "normal" aging actually indicate accumulated damage from multiple causes and then emotional devastation delivers the final blow.

What are the multiple causes? We know that the brain depends on the proper utilization of amino acids to create the neurotransmitters we depend on for healthy brain functioning. In Alzheimer's Disease these neurotransmitters become scarce. However, things that disrupt amino acid metabolism are plentiful and well known.

First and foremost is nutrition and, in particular, how much protein a person eats and how well they metabolize it. Amino acids are found in protein sources like meat, chicken or fish and in adequate vegetarian combinations of beans and whole grains. In order to properly utilize these amino acids, however, a person needs to have adequate amounts of folic acid, B6, B12 and Vitamin C. The body breaks down the amino acids to create other compounds the body needs for various functions. If that does not happen properly in the case of the amino acid methionine, compounds that would otherwise be used to lower cholesterol are not made while a metabolite called homocysteine is created which is toxic in large amounts. High levels of homocysteine injure the arteries and encourages the formation of plaque. There also seems to be some correlation between high homocysteine levels and early stage Alzheimer's Disease.

Things that interfere with amino acid metabolism include not eating enough vegetables (the dark leafy kinds have folic acid in them), having an allergy or sensitivity to wheat or other foods, excessive exposure to pesticides and other environmental toxins, and long term exposure to mental stress and depression.

Things that help the body cope and recover from these things include:

* Adequate but not excessive protein consumption (remember, you need B vitamins and folic acid to metabolize the protein -- it takes a lot of spinach to make up for that Big Mac!)

* High dosages of folate, Vitamins B6 and B12

* Lots of lightly cooked fruits and vegetables

* If you have a wheat sensitivity (which is very common) give up bread, pasta, cookies and other wheat-containing products (I guarantee you'll lose weight!)

* Adequate fresh clean water

* Exercise and mental stimulation (don't watch TV all day!)

* Love and active engagement in life

I believe these last two items are most important. Even people who have already been diagnosed with Alzheimer's Disease ward off the worst effects of the disease and maintain their ability to function longer if they are positively engaged in life than people who are clearly depressed and withdrawn. And sometimes -- I've seen it only a few times in five years of doing this work -- the symptoms of memory loss and confusion can go away almost completely when a person renews their ability to find joy and excitement in being alive and gets the care and attention it takes to make that happen.

The previous blog post is an excerpt from my book The Spiritual Journey of Family Caregiving available now directly from me for $14.95 plus shipping.

How Do You Perceive Your Caregiving Role?

2008-08-21T22:36:00.000-07:00

An excerpt from The Spiritual Journey of Family Caregiving:

On the assessment form we use to judge a caregiver's level of stress, there's a section about how the person perceives his or her caregiving role. As that section is written, I find it fairly useless for my purposes as a family consultant but it occurred to me the other day that the topic in general is actually quite significant. You see, how a person thinks of themselves in relationship to family caregiving determines how they interpret what happens in that experience and, subsequently, how they respond.

For example, when you think about your caregiving situation, do you think of yourself as a prisoner? If so, your patient or the other family members you think cast you into this role must look like jailers. Within such a perspective every additional caregiving task becomes a symbol of oppression, family interactions become battlegrounds, and caregiving is nothing more than a nightmare to somehow survive.

But what would happen if you changed your perspective? I've met other caregivers who thought of their caregiving as a mission from God. One person even told me that he believed his life was saved from a near fatal heart attack so he could come back and provide assistance for his wife. For him, every new caregiving task was further evidence of how important and needed he was and provided him with yet another opportunity to show his love and devotion. He was proud of his mission and was doing everything he could -- including calling me for respite assistance -- so he could do God's work and be of service to his wife until the day she died. What a contrast!

Most people I meet fall somewhere in the middle of these two ends of the spectrum and many change their perspectives from day to day depending on how they feel or how well their own needs are being met. It's become really clear to me that I can't work with a caregiver well unless I know what mindset they are living in.

My greatest joy as a family consultant is when I can help a person step outside of a life-limiting perspective and choose a more empowering approach. Nobody has to be a prisoner -- on some level caregiving is always a choice. When someone feels like a prisoner it's because they don't want to face the consequences of breaking out of jail. Someone will be mad at them or they might feel guilty if they back away from the job, they might have to put their relative into a nursing home or use resources to pay for in-home care the caregiver was hoping to keep for themselves. There's always something the person doesn't want to face. . . but it's always a choice!

Very often, there isn't anything a caregiver really wants to do to change their situations when they consider the alternatives but they can always change their point of view. "I'm not a prisoner --I chose this life and if I want to change it, I'll just face what I don't want to face and do it !"

Gratefulness and Family Caregiving

2008-08-12T22:30:00.000-07:00

Is the glass half full or half empty? It depends on what you choose to focus on. When times get rough you can't ignore the empty part because that's information about what needs to change, eventually, as time goes on. But neither should you ignore what you have left because that's what makes life worthwhile. Who do you love? Who has loved you? Do you have a roof over your head? If things get really bad will you have the family, friends and community support to survive?

Most of my clients are very focussed on what they've lost, as is normal and natural when life is filled with loss and change. But I had a conversation with a friend yesterday that changed my perspective. He's been given a death sentence -- he was diagnosed with an illness that, theoretically, at least, only gives him a few months to a year to live. Of course, he wants to beat those odds and live a long healthy life but he knows -- like all of us -- that he could die in his sleep at any time. He feels healthy enough now so he was trying to decide what to do with his life. Should he take on a long-term commitment to make a particular dream come true? What if he doesn't have enough time left to accomplish his aims? Or should he take the next flight out to the Bahamas and live the rest of his life on a boat in the Caribbean, fishing, drinking rum, with his feet up in a hammock? The answer, for him, was to live with the paradox. To live as if each day was his last while continuing to do the long-term things that those of us who think we have forever would choose. On his deathbed he didn't want to think that he could have accomplished his dream but threw the opportunity away because he was so afraid he might die. AND he wants to enjoy the time he has left. He wants to be grateful for the time he has left and use that time to work towards his dearest life dreams.

That's the paradox we live with as caregivers, too. Yes, we want things to be different and need to plan for and make changes as time goes on. AND we need to find things to appreciate every day because every day COULD be our last. What do you appreciate within the context of being a family caregiver?

This blog is an excerpt from The Spiritual Journey of Family Caregiving.

Give Yourself to Love

2008-08-05T20:04:00.000-07:00

"Give yourself to love
If love is what you're after.
Open up your hearts to
The tears and laughter.
Give yourself to love,
Give yourself to love."
--Kate Wolf

My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.

I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!

Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).

What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.

This was an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it directly from me, autographed, for $14.95 plus shipping.

Flat Land

2008-07-30T19:47:00.000-07:00

Excerpted from the Spiritual Journey of Family Caregiving, available directly from me for $14.95.

A few months ago I had lunch with Mark O'Neil, an interfaith minister writing a book on spiritual lessons he learned on a cross-country bicycle trip with other people. He told me that when the going was rough, cycling up mountains, all the riders could think about was flat land when everything would be easy. That's all they could think about mile after mile and then finally they got there. Kansas, Utah, Nebraska! Blissful relief!

At first.

But then the reality of flat land would hit: mile after mile of unrelenting boredom. Cornfields and unchanging vistas for as far as the eye could see. It eventually dawned on them that as hard as the mountainous roads were, they were far preferable, far more interesting, and a lot more fun.

I had a similar experience recently. I finally got away for a long weekend in the country. Life had been so stressful that I had made no plans and brought no projects, not even a book to read. I was looking forward to a long weekend with nothing to do, socializing with friends and enjoying the scenery. It was great for the first day and a half. But there were no hiking trails nearby and I didn't have access to our car for much of the time. Suddenly the reality of being stuck in the country with nothing to do sunk in -- I felt trapped! Hours of unrelenting boredom! I wanted to do something, go somewhere -- anything would do! What seemed like heaven on earth quickly turned into hell. (Clearly, I wasn't into the idea of this becoming a meditation retreat!)

On the way home our car broke down in San Francisco just after we got off the Golden Gate Bridge. I normally think of that kind of an experience as a disaster -- stuck in the city on a heavily traveled street with cars whizzing by narrowly missing our vehicle, waiting for hours for a tow truck to take us safely home. But instead of feeling awful I was struck by how uplifted and excited I was. Finally, I was having an adventure! It had challenges, perils, and involved interesting experiences I never had had before. We met wonderful people who helped us call for help and got us off the Presidio and onto a quieter, safer street nearby. We played a game while waiting for help: trying to guess at what point cars would notice our flashers and pull into the next lane and trying to see if we could influence drivers to pull over more quickly through prayer and psychic intervention (it actually worked!). We noticed and commented on the weird variety of reactions people had to seeing us stopped by the side of the road -- everything from kind suggestions for help to yelling at us for tying up traffic! We got to have the fire department inspect our car to see if it was a fire hazard and then watched the process of having our vehicle lifted onto a flatbed truck and hauled to Santa Cruz. In short, even though parts of it were very stressful, this "bad" experience was the most interesting and engaging thing that happened all weekend.

So what does this have to do with caregiving? Well, I've noticed in the caregiving support groups I lead that when week after week people report that nothing has changed, nothing is happening, the energy level of the group appears to drop. It's like everything is stuck in a rut and, instead of enjoying the calm, people seem demoralized. But when something does happen, when there's a crisis or a change that needs to be accommodated, the group rises to the occasion with vim and vigor. People become energized, interested, they get ready for action or do what they can to pump up the person who needs to take action. It's quite inspiring as a support group leader to watch everyone come together to help one person figure out how to do what needs to be done.

Right now, we're not on flat land. Our country is on red alert, watching, waiting to see what's going to happen next. [This was written not long after 9/11.] I see the stress on everyone's face and recognize it in myself; yet, I'm also energized. I'm awake. I'm interested and engaged in what's happening in the world in a way that felt more difficult a few weeks ago. And I'm not alone. Suddenly we all have an urgency to do what needs to be done and an acknowledgment that this isn't something we can do alone.

And neither is family caregiving.

The message for today is together we can do whatever needs to be done. People in a common struggle help each other out. That's what happened in New York. That's what happened here in Santa Cruz after the '89 earthquake. In a crisis you can't just wait for the Marines -- they're busy! You depend on whoever is available and they depend on you. Are you getting overwhelmed by caregiving but close-by family and friends are hard to find? Notice who is in the struggle with you: your fellow caregivers! Join an online support group. Join an in-person support group. Then call these people up and exchange friendship and support. Hire an in-home support person together for an afternoon and go to the movies. Invite each other over for dinner with your patients. Then make a pact to call each other for support when you need extra help. This is different from imposing -- it's a mutual agreement to help each other through whatever needs to happen. Not only that, you get to have more fun. Three women I know who met each other through an Alzheimer's support group, support each other to get respite and take weekend trips together. You should see their happy relaxed faces in the photos they took of their last trip to Tahoe! Their partners are steadily getting worse. None of these women are on flat land -- they're climbing mountains -- but they're starting to have fun along the way and they know they'll have support through thick and thin.

The Effect of Worrying and What to do About It

2008-07-22T15:30:00.000-07:00

An excerpt from my book, The Spiritual Journey of Family Caregiving:

When it comes to stress we usually like to think that something outside of ourselves has made us be stressed out, and often there IS an outside event that sets the process in motion. However, our reactions to stress actually stem from a very complex interrelationship between our physical heredity or current level of stamina, our thoughts about the situation we are dealing with, our past history, and a multitude of other factors, both environmental and internal. How we perceive the situations we find ourselves in is related to all of the above factors which explains why one person might handle a confused or ill-tempered relative with ease while another dissolves in tears of frustration.

Whenever a person perceives a threat to their well-being (real or imagined) there is a chemical reaction that occurs in the brain. Part of your brain called the hypothalamus sends a signal to your nervous system to release epinephrine and norepinephrine (also known as adrenaline and noradrenaline) and related hormones. The job of these hormones is to prepare you to respond effectively to danger. Your heart rate, blood pressure, breathing rate and muscle tension all increase which is exactly what you need to have the power to fight a battle or run away.

However, in the world of caregiving, many of our challenges are not the kind we can fight or run away from. When stress hormones are not used by the body to cope with an emergency, or released in some other way (see below), they build up. If we go beyond the capacity of our body's ability to cope, a wide assortment of physical ailments result ranging from headaches and stomach upset to heart disease and cancer.

So What Can We Do About This?

Because the source of our stress is often more complex than it might appear on the surface, the process of reducing stress is most effective when it addresses these multiple levels of experience. Here are a few approaches that may work for you. Mix and match at will.

The Physical Approach: Many people find that the most effective solution is to use those stress chemicals for the purpose they were designed for -- fight or flight. Hit a punching bag, run around the block, do a few jumping jacks, join a dance class, or swing a tennis racket. Do anything that gets your body moving actively at least once or twice a week. My mom's technique was to clean the house. We had the shiniest windows and floors around when she was upset!

The Emotional Approach: It has been found that the tears of a person crying because they are sad contains stress hormones that are not present in the tears of someone cutting onions so it is theorized that crying is how the body discharges these excessive chemicals. During the release of fear or anger perspiration and respiration may act the same way. So find a safe place, where you won't needlessly hurt the person you care for, and let it out! Cry, laugh, shout. Express how you feel. Sometimes just the process of telling your story to another person who cares can help. Join a support group, call a friend, call a therapist, write in your journal, get on-line and write to a discussion group, pray or talk to God -- do anything that helps you release the tension of struggling emotionally by yourself.

The Do-Something Approach: My personal favorite stress reduction technique is to do something that will keep me from being stressed by the same situation in the future. If there's something I can change to keep from having to feel these feelings again, I do it if I can. This entails seeking the root cause of your emotional reactions and creating an action plan to address it. For example, if you blow up when stuck in traffic and the reason is that you have so little time to handle your many responsibilities, one solution might be to get help with those chores. Perhaps you can call on family, friends, or community agencies to fill in for you or pay someone to do them.

The Mental Approach: Sometimes the best way to reduce tension in our lives is to change our mental attitudes and expectations. There is only so much we can do and sometimes there is no great solution to our problems. So then the change we seek is internal. We give up on our preconceived notions of perfection, of how things "have" to be and adapt to how things are instead. Changing negative thought patterns into positive ones takes time and practice but the rewards can make all the difference. Think back to a time when you handled a stressful situation with ease. What was different? Chances are, you were different. For example, one day last week every little thing I tried to do went wrong. I felt aggravated all day long. The next day started out exactly the same way but, instead of fighting it, I burst out laughing. "I give up! This is obviously beyond me -- it must be in the stars, a bad day astrologically!" I normally wouldn't believe that but it changed my attitude and I immediately felt better.

The Spiritual Approach: Studies indicate that people who have some kind of spiritual focus to their lives cope with stress better and have a higher level of well-being than those who do not. Trusting in a power greater than yourself that you can draw on for guidance and support is the key here. If you have no spiritual beliefs or religious practice, a similar benefit can be attained by cultivating the attitude that the world is basically benign and that by utilizing all your internal and external resources you can handle anything that comes your way.

Taking "Family" Caregiving to New Limits

2008-07-16T12:06:00.001-07:00

Okay, I know it's out of the realm of what this blog is "supposed" to be about. But, really, caregiving is all about love in action and that's what this video is about as well. Enjoy!

Elder Fraud and Elder Abuse, Part Two

2008-07-14T19:33:00.000-07:00

Another excerpt from The Spiritual Journey of Family Caregiving. Buy it now directly from the author.

Elder Abuse

People think:
"I care about my mother -- that's why I brought her home to live with me when she started to slip. But my own life is starting to fall apart. I just found out my husband is having an affair and my youngest son is failing in school. I'm afraid he might be abusing drugs. I'm at my wit's end and when my mother starts in with her criticisms and complaints I just want to shake her. I have never hit her but sometimes I don't come when she calls for help, and once I gave her an extra dose of pain medication to keep her in bed so I could get a moment's peace."

"I have no choice about being a caregiver and I hate it. My father was abusive to me when I was growing up and he's still a mean-spirited old man. But I can't afford to move out and taking care of him is the price I have to pay. Even though he's in a wheelchair and can't physically hurt me, I feel so angry with him that I just can't tolerate his demands at all. I just let him sit in his dirty Depends all day if he doesn't treat me right."

"I don't have the problems some people I know have with their relatives. If Aunt Mary doesn't do what I want I just threaten to send her to a nursing home and she shuts up."

Reality: None of these people think they are abusing their relative. After all they don't hit them. But under the law, the definition of elder abuse includes neglect, deliberate overmedication, and psychological abuse and threats.

The common thread in all of these examples is the caregiver trying to avoid feeling victimized by the circumstances of caregiving. The fact is: nobody can make you give up your own life against your will. If your own well-being (physical, financial, emotional, etc.) is eroded by caregiving it is time to ask for help. Call a family consultant at the Del Mar Caregiver Resource Center, a social worker at the Human Resource Agency or a case manager at Senior Network Services as a starting place.

Another Book Review

2008-07-10T20:48:00.000-07:00

The Spiritual Journey of Family Caregiving was featured in Quest, the national magazine for the Muscular Dystrophy Association this month. It's a nice magazine. You might want to check it out.

Elder Fraud and Elder Abuse, Part One

2008-07-08T19:29:00.000-07:00

An excerpt from The Spiritual Journey of Family Caregiving.

On Oct. 27, 2000 the San Jose Mercury News reported on the case of a San Jose mortgage broker charged with embezzling more than $700,000 from his 90-year-old mother. The article indicates that he had taken control of his mother's finances when she became incapable of handling her own affairs and had taken multiple mortgages out on her home and made large withdrawals from her investment accounts for his own benefit. He was eventually forced to sell her home because he could not make the payments.

This is a pretty extreme case but, unfortunately, elder fraud and elder abuse is not uncommon. In fact, the conditions that lead to these abuses are the very substance of what all caregivers have to contend with. What people believe is a reasonable response to a stressful situation can look very different in a court of law. Could you be committing a crime and not even know it?

Elder Fraud

People think: "I'm doing so much for grandma. I'm with her round the clock. I change her diapers. I listen to her complaints all day long. I answer the same questions over and over. Sometimes she doesn't recognize me and screams at me to get out of her house. You don't know what I go through! And meanwhile, I'm not working, I have no income, I can't take care of my own life because I'm taking care of hers. I deserve to be compensated for this! Who's going to take care of me when I'm old? I have to manage grandma's finances because she can't figure it out anymore. When I have her sign checks I arrange to have some of the money go to me. She doesn't know-she doesn't see that well. But it's ok. After all, it's MY money. When she dies, it's going to me anyway - or it ought to be. So what's the big deal?"

Reality: Feelings like those expressed above are perfectly natural -- I hear stories like this every day. However, when a person starts taking compensation from grandma's pocketbook the line has been crossed into elder fraud. No matter how it feels, there is no justification for taking someone else's money for your own purposes in a court of law.

People think: "But if I don't use her money for myself I will have to leave her to get a job and who will take care of her if I'm not there? My mom won't let anyone take care of her but me! And we can't afford to hire someone even if she did."

Reality: This is a hard situation to deal with by yourself. Luckily, you don't have to. Ask for help. If you are dealing with dementia or some other form of brain impairment call Del Mar Caregiver Resource Center. If you are involved in some other form of elder caregiving, call Senior Network Services to find out what services are available. Speak with a family consultant, counselor or social worker who can help you sort out your options and feelings. Even joining a support group can help you figure out ways to get your elder to accept help from social services or other friends and family so you'll be free to create a healthier life for yourself.

The Connections Between Patient and Caregiver Mental Health

2008-07-03T19:19:00.000-07:00

Excerpt from The Spiritual Journey of Family Caregiving:

I co-lead a support group for patients in the early stage of Alzheimer's Disease and their caregivers for the Alzheimer's Association in conjunction with Del Mar Caregiver Resource Center. One of the caregivers in the group had emergency surgery several weeks ago and almost died. When she returned she looked radiant. I had never seen her look so healthy and relaxed.

"I learned something wonderful!" she joyfully reported. She had been sick for a long time without realizing it. But now that she was healthy, rested and relaxed after a long enforced break from caregiving, her husband (the Alzheimer's patient) had improved! He wasn't cured by any means, but because he felt less nervous around her he was able to remember things more easily.

Her husband piped in at this point."It's important to feel confident around the person who takes care of you." He agreed that it made a big difference.

So, caregivers, take care of yourself! And don't be afraid to take a break when you need it.

The "Relaxation Response"

2008-07-01T12:02:00.000-07:00

Why is it that people in the medical profession need to create new jargon for perfectly acceptable techniques? I'm talking about Dr. Herbert Benson and what he calls "The Relaxation Response." Benson conducted a study showing that teaching his patients this technique resulted in decreased metabolism, rate of breathing, blood pressure, muscle tension and heart rate. It was effective in the treatment of a wide variety of disorders including hypertension, cardiac arrhythmias, chronic pain, insomnia, mild to moderate depression, infertility, PMS, migraine and cluster headaches, even dealing with symptoms associated with cancer and AIDS.

What is this miraculous technique? Meditation. Mantra-based meditation to be specific. Benson teaches his patients to repeat any word, sound or phrase that has meaning for them. "Peace", "Om" or something longer like "The Lord is my shepherd." He tells them to passively disregard any intrusive thoughts that come to mind and return to the mantra instead.

That's it. Meditation. I remember when he announced this amazing new "Relaxation Response" technique. I was at a seminar on Spirituality and Health put on by Harvard University several years ago and he did a highly-touted presentation on his findings at that event. I remember wanting to shout from my seat "Where were all you people in the 60's and 70's when Transcendental Meditation was shown to have the exact same effect? Why the hell did it take a doctor giving it a socially-acceptable name to make it alright to come out of the closet and say 'yes' to something millions of people have trusted and used effectively for hundreds of years?"

I better go practice my "relaxation response." The inanity of this situation makes me want to gnash my teeth.

Om mani padme hum, Om mani padme hum, Om mani padme hum...

Ah.... much better.

Give Yourself to Love

2008-06-28T19:55:00.000-07:00

"Give yourself to love
If love is what you're after.
Open up your hearts to
The tears and laughter.
Give yourself to love,
Give yourself to love."
--Kate Wolf

My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.

I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!

Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).

What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving.

Buddhist Philosophy and Family Caregiving

2008-06-28T18:53:00.000-07:00

A caregiver said something very profound to me one day which I decided to tape to my wall. She said that as a young woman in her forties she couldn't stand the Buddhist philosophy of acceptance of what is. She always was a crusader for social change and "making things right." But now that she's 84 years old, as her body is failing her and her short term memory is leaving, she clings to the following Buddhist philosophy as a lifeline. Her words:

That it is possible and ultimately desirable to accept life's limitations while enjoying the mental and emotional freedom that comes from noticing the beauty inherent in every present moment. That no matter how bad things get there is always something in the present moment that makes life worth living and that it is my task to learn to spend more time noticing those things than I do lamenting the losses of the past and the worries of the future.

Today, as I sit writing this, I have the windows of my house closed up tight to keep the smoke in the air from billowing in. There's a huge fire burning across the bay in Big Sur and the wind is blowing the smoke directly this way. The heavy Santa Cruz fog keeps the smoke trapped in the air. We haven't seen the sun in two days.

Two friends were evacuated and narrowly missed losing their homes in a fire just a few miles away and now business associates are in danger of losing almost everything (home and livelihood) in Big Sur. The fires are literally just across the street from their homes. When I think about the challenges friends have been facing lately I have to be thankful for what I have in my life right now.

It frequently takes a crisis to remember what matters most. My Buddhist caregiver friend reminded me to take time to do that every day.

Rosemary is For Remembrance

2008-06-16T20:22:00.000-07:00

"There's rosemary; that's for remembrance.
Pray, love, remember."
~Shakespeare, Hamlet

Paul's mom sent us a nice article about aromatherapy that she clipped from Prevention Magazine. In it was reported that a study with college students at the University of Northumbria showed a significant increase in memory and feelings of alertness for those who used rosemary essential oil as compared to a control group. Oddly, the Prevention Magazine article did not report that the study also showed that rosemary slowed memory recall for the same test subjects. In other words, the students outperformed other students in two different kinds of memory tests (and felt more awake doing it) but took a little longer to come up with the results. Hmmm. Could it be that if we stay awake and slow down our brains function better?

I took a quick look around the internet to see if I could find more about this. According to research done by the Burnham Institute for Medical Research there are ingredients in the rosemary herb that protect the brain from the injurious effects of free radical production. Free radicals are thought to contribute to a wide variety of neurological conditions such as stroke and Alzheimer’s in addition to what is considered "normal" age-related memory loss. You can read more about free radicals in another blog I wrote here. In that post I was talking about antioxidants such as those found in blueberries that have a useful effect in counteracting free radical reproduction in the human body. It turns out that the carnosol and carnosic acid found in rosemary are powerful antioxidants. In addition to having a significant effect on memory loss they have been shown to have a protective effect against cancer.

Scientists are hard at work trying to use these findings to create powerful drugs which could be used for the same purpose. Meanwhile it couldn't hurt to add a little rosemary into your life. I like it in my garden--I can't seem to resist picking a little bit and rubbing the leaves between my fingers whenever I can. The smell is irresistible. I use it in my Mama Love for Focussed Attention perfume.

Stroke of Insight

2008-06-12T11:28:00.000-07:00

I just finished reading My Stroke of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor and I highly recommend it to everyone. Jill Taylor was a neuroanatomist who had a severe stroke on the left side of her brain and managed to recover completely. It took 8 years of step by step progress in which she needed to relearn everything most of us take for granted. How to talk and understand language, how to walk, how to dress and feed herself. And now she has gone back to teaching brain anatomy on the college level, and promotes brain research across the country.

Her book is fascinating because she tells the story of what it was like to have a stroke and what it was like to recover from it from the perspective of not only someone who experienced it but as a scientist who was fascinated with the process and delights in sharing it. Not only that, her book offers very interesting insights into the functions of the right and left hemispheres of the brain, especially in terms of processing experience. She's waxes very eloquent about how living in the right brain is very much identical to what people experience in high states of mystical experience.

It's a great book, easy to read and understand. It could be invaluable to anybody taking care of a loved one with stroke but I recommend to everybody.

How Do I Get My Parents to Move?

2008-06-08T11:25:00.000-07:00

David Solie, author of How to Say It to Seniors: Closing the Communication Gap with Our Elders, has a wonderful article on his blog on this topic. In it, he helps his readers close the gap between our generation's desire to keep our parents safe and well-cared for and their intense insistence on staying at home as long as possible. "How can they be so unreasonable?" we think. "Can't they see that I can't do it all for them anymore--I have a job, a husband and kids of my own. Dad keeps falling down, he's losing his eyesight. Mom gets lost on the way to the grocery store. But they fight me tooth and nail every step of the way!"

According to Solie, all is as it should be. And now that I have a fresh perspective on the problem I'd have to agree. Our parents are very much aware that they are in their final days, step by step losing everything they once held dear. For them having even one more day with the people they love, one more day in the home they created and care so much about, one more day means so very much.

You have a choice about the role you play in this progression. Silently, holding their hands, and doing everything possible to help them hold on to those minutes and days as long as possible without any limits and boundaries on your part is one. Many people come to me with this as their expectation. But there are limits and boundaries -- physical ones, financial ones. Eventually something -- or someone-- gives out. Or you can do the same thing but hold on to a reasonable expectation about what's happening and what can be done. "I'm here for you mom, I'm here for you dad but when we get to the point of xyz (set your limit and boundary here) we're going to have to try something else. Can we put a plan in place for that together?"

They may refuse that, too. "I lived in this house my whole life and I'm going to die here!" Your parents are accepting that this process is going to end in death. Under the circumstances their "safety" and "comfort" isn't necessarily their highest concern. It's about cherishing what they do have left a little bit longer. You'll do better if you can accept this, too. At least to some extent. Deal with your feelings about their impending death. Don't fight the reaper—work with it instead, choosing to make this time a loving end of life experience as much as possible.

Or you can fight with them, missing the point of why we're here together on this planet and why you're doing so much for them in the first place: you love each other. Keep that thought foremost in your minds and whatever has to be done will happen.

Deciding to Use a Nursing Home

2008-06-04T20:32:00.000-07:00

The following blog entry is an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it now by clicking here!

The decision to place a loved one in a nursing home is always tough. We feel horrified by the options available to us. We feel guilty. We worry that the move will send our loved one into a tailspin. But when caring for a loved one at home requires more emotional and physical resources than you have available using a skilled nursing facility is sometimes the best decision. Consider the cost to everyone involved.

I once had a caregiver tell me that she had given up her career to take care of her mother and that in the course of caregiving she had become a virtual prisoner in her house. Her mother could not be left alone and the daughter could not find the paid help she needed. She had lost all her friends because she was never available to see them. She was unable to sleep because her mother would call for help several times a night, and she was losing her hair from worry and stress. There were very few workable options left but the caregiver hung on and on until the day she was diagnosed with a serious illness. Her doctor insisted that her mom be placed immediately.

All her life the mother had told her daughter “I’ll kill myself if you put me in a nursing home,” but within a few weeks she adjusted and eventually came to like her new caregivers and friends. My job shifted to consoling the caregiver for not doing it sooner.

The most loving option is to do what people need, not necessarily what they think they want. Keep in mind that placement is not the end of your caregiving career. The family caregiver can and should play an important role in providing the emotional, spiritual, and advocacy support the placed person needs to weather such a difficult transition in the best way possible. This shift in role begins the moment you start to prepare for making the move.

Preparing for Making the Move

Step 1. Prove the Need. What are the costs involved in keeping the patient at home? Is the patient’s safety at risk? Is a single caregiver being expected to meet all the patient’s needs at the risk of their own health and well-being? Are there community services or paid services available that are adequate to keep the patient at home?

Step 2. Involve the Family. The whole family needs to be in agreement about this decision as much as possible. Family meetings are hard to arrange when people live out of town or have busy schedules. It can be emotionally difficult to face the fears and guilt and sadness such a choice entails. But for the good of family relations an effort to communicate via telephone or email must be made. Let everyone express their feelings without attack. Decide as a group to put each person’s needs ahead of other people’s desires and make choices based on what’s best for all concerned. Ideally, the patient should be involved in this meeting but when dementia is fairly progressed that is not always the most prudent path. Also, if family members have differences of opinion which cannot be easily resolved it can be very helpful to do this kind of preplanning with an objective third party acting as facilitator.

Step 3. Talk to the Patient. This has got to be one of the hardest things to do. The ideal situation is to approach the patient with honesty and a clear explanation of the reasons why the family wants them to consider this option. If the patient has enough savvy to be able to make rational choices about their future include them in the decision-making process from the start. You may find that with enough advance preparation they may actually feel relieved that their needs and the needs of their family are being well thought about.

Sometimes, though, the demented relative completely forgets that any discussion took place or is too volatile to be included in the first place. In any case, the patient is likely to need (or demand) a chance to express their full feelings. Responses like “How could you do this to me?” or “I’d rather die than go to a nursing home” are expressions of fear and grief. It can be hard to be treated with such reproach but consider what you might need if you were in their shoes and reach for the most loving approach you can. Acknowledge the pain they are feeling as best you can, but resist letting yourself be guilt-tripped into making a choice that is simply not sustainable. Allowing your patient’s fear to run the show is not, in the long run, healthy for either one of you. Stay firm. Stay loving. Get help with the feelings that come up by talking to a counselor, a supportive family member or friend.

Step 4. Begin Your Search. Now it’s time to visit homes if you haven’t already. Get on waiting lists. Talk to your financial and legal advisors. Talk to your local senior service agencies to find out what kinds of complaints have been registered (if any) about the homes you are interested in. Take your time. Plan ahead if possible so you don’t have to make a swift decision from a limited number of choices. And keep in mind that in many parts of the country there is a shortage of space in local homes and waiting lists are the norm. The wait for MediCal or Medicare-paid beds can be even longer. You may need to expand your search for facilities to another county or even further away. The commute may be inconvenient, but the quality and price of the facility might be worth the ride. Be flexible. Be brave. Let go of finding the perfect situation and you’ll get what you need.

Should My Relative Move into an Assisted Living Facility?

2008-05-31T20:21:00.000-07:00

First, what’s great about assisted living?

Assisted living is NOT nursing home care! Most people get a horrified expression on their faces when I suggest they look into assisted living for their relatives but I’ve met many other people who happily have chosen this option for themselves to retain their independence and enjoyment of living longer. Assisted living communities can be a great source of new friendships. Most of them offer activities that beat sitting by yourself in front of the television any day. Some provide transportation to things people want to do and all of them provide meal preparation, housecleaning assistance and personal care services that would otherwise be hard to manage. Assisted living frees family members from the burden of juggling caregiving with dual careers and child-rearing. It can give an overstressed spouse a chance to rest at night and can even be used, in some cases, for a week to a month of respite for those caregivers intent on mostly caring for a loved one at home.

What’s not great about assisted living?

It’s expensive. $3000-$6000/month is not unusual in this area. MediCal and Medicare do not cover assisted living and neither do many long-term care insurance policies. (Be sure to read the fine print!) However, the reality is that 24 hour in-home care is much more expensive and, when a person is willing to move, there is often a house that can then be sold to pay for services. Unfortunately, for many families the choice to use either facility care or extensive in-home services is, financially, out of the question.

Also, change, by it’s very nature, is disruptive and stressful. Moving into a new home can be especially traumatic for people who have lived in one place many years and have their whole identities wrapped up in their home environments. Dementia patients almost always go through a period of increased disorientation when they move. If they are prone to having catastrophic reactions, these displays of intense emotion are much more likely to occur in the wake of a move and caregivers who don’t expect this can be wracked with anguish and grief. Even healthy people go through incredible grief and loss at the reality of dismantling a beloved home and trying to reduce a household of belongings into what will fit in a 1-2 room apartment. New routines, diminished expectations, and being surrounded by a sea of unfamiliar wrinkled faces can bring thoughts and fears about one’s own age and mortality into sharper focus. If part of one’s belief system includes a fear of dying alone among strangers, it can feel as if one’s worst nightmares have come true.

None of these are reasons not to choose assisted living and not all people have reactions even close to this. The earlier in the course of the disease such a choice is made, the better in terms of ease of adjustment. In fact, many of my clients have been pleasantly surprised by how well their loved one adjusted to their new homes and how easily they made new friends. Some people positively thrive and come back to life. Still, it is foolish to ignore the downside. I hear just as many stories about people who gave up on living as soon as they left home and died.

So how is an exhausted caregiver supposed to make such a difficult decision?

You need to address the worries and needs of the care receiver as much as possible while doing what has to be done for your own physical health and mental well-being. Nobody benefits when a caregiver dies or goes into physical decline as a result of trying to do too much. Then there are two patients instead of one and the care receiver almost always winds up in a facility anyway—only instead of having the support their dearest loved one would have provided, they have none.

If using an assisted living facility is something the family is willing to consider, start visiting them early. Educate yourself on who provides the services and environment you prefer in a price range you can consider. Make peace with not leaving your children an inheritance or, if it’s not too late, get a long term care insurance policy that covers assisted living care.

Choose to focus on the positives when you introduce the concept of assisted living to your relative and the rest of the family. Bring the care receiver for a visit during lunch or at a time when an activity they might enjoy is planned. If you have friends or family who deliberately chose this arrangement for their retirement take advantage of their help and positive mental attitude by visiting or talking with them by phone. Alternatively, ask the facility if they have any happy residents who might be willing to chat with you. Find out why they like it and how they made their decision. Knowing others who are having a positive experience goes a long way towards dispelling many of the fears you and your family members may be carrying.

Also, understand that using facility care does not mean giving up on providing your own loving care. Reject the stereotype of the heartless relative who dumps their patient in a rest home and forgets about them. Families can still maintain a loving connection even when a demented loved one lives in a separate place. I know caregivers who pick up their patients every day to go for a drive, go out for ice cream, take in a movie or go for a walk and report that their relationships are sweeter because they can focus on love and creating pleasant experiences instead of on how to survive the stress of not getting enough sleep and providing constant supervision. The care facility provides the much needed hands-on care and respite so the caregiver is free to be a daughter, son, spouse or friend again.

Mindfulness Meditation for Family Caregiving

2008-05-29T00:56:00.000-07:00

Pamela Larsen Schroeder has a nice blog article about the practice of mindfulness (Vipasana) meditation as a tool for stress reduction for family caregivers. Bob Stahl, the person who co-led the Early Stage Alzheimer's Patient and Caregiver Group with me taught several of us this technique one day. I highly recommend it.

Should I Move My Parents In With Me?

2008-05-28T20:07:00.000-07:00

The following blog is an excerpt from my book The Spiritual Journey of Family Caregiving available directly from me for $14.95 plus shipping.

I wish more people would ask me this question before going ahead and doing it. It can be a great solution IF the caregiver is prepared for what it will really mean. Too often, though, people have an overly romantic notion about how great it will be for their children to have their grandparents nearby and how wonderful it will be to have a closer relationship with mom and dad. They look forward to the move only to find out that dementia has changed grandpa into a mean-spirited person who spouts obscenities and grandma is so used to having her way in her own home that she is not prepared for the shift in role being a member of a combined household can mean.

Even in the very best of situations it is not simple to lose your autonomy after years of being independent. It’s hard for parents to be the rulers of their own roost and suddenly have to learn to negotiate and compromise. It’s devastating to have to lose a lifetime of belongings and the precious memories each of those possessions holds to move into a smaller space. Even young healthy people find it challenging to make the shifts and changes a new living arrangement tends to entail, especially when it involves multiple people and long-standing family dynamics. For elders, it’s doubly so.

People who have lived all their lives in multiple family households do the best... but I rarely meet those people because large extended family units who band together to share the work don’t tend to need my assistance so much. It can also work well if a family has a private apartment on the same property so their parents have their own domain and the caregiver’s family maintains its privacy and daily routines. When people choose to share a more limited space, communication about beliefs and expectations needs to be particularly clear, and there needs to be patience with the shifts and changes and negotiation living together often entails. It can be very rewarding. Mutual exchange between the generations really CAN be one of the best things you could do. But it’s equally important to plan ahead for the challenges and pitfalls. Ask yourself the following questions:

Can you and your parent speak honestly and openly? Do you communicate well enough to work out differences of opinion?
Do you and your parent have unresolved conflicts between you?
Is there enough room in your house for everyone to have sufficient privacy?
Is your home able to be adapted for someone who may have disabilities or whose mobility might be impaired? Are there specific needs that may require remodeling? Can you afford to do it?
Have you determined how much care your parent will need? Can you realistically provide that much care?
What will happen if more care is needed? Have you talked about long-term arrangements?
How do all members of the family feel about this decision? Is anyone going to be resentful or unhappy? Are you prepared to deal with that?
Are you ready to state the rules of your household and set limits on what you will or will not do? Will your parent be able to accept these expectations and limitations?
How do you really feel about sharing your household? Will you be able to give up some of your autonomy in order to allow your parents to have some say in decision-making and household responsibilities? Have you created strategies to address these concerns, if any?
Will you be able to find other living arrangements for your parent if the situation is no longer working?
What will be great about living together? Will the advantages outweigh the disadvantages?

These questions represent only the tip of the iceberg. The Family Caregiving Alliance has a well-written and very thorough fact sheet on their website called “Home Away from Home: Relocating Your Parents.” If this is your issue it’s well worth a read!

Should I Move in with Grandma?

2008-05-21T19:52:00.000-07:00

This blog post is excerpted from my book The Spiritual Journey of Family Caregiving. Buy it directly from me for $14.95.

I’ve had a number of young people in their 20’s or early 30’s decide to take on the caregiving of a beloved grandparent while staying in the grandparent’s house. Because the cost of housing is so high in the Santa Cruz area many people think doing caregiving in exchange for housing is a good deal. Grandma gets in-home care for free, the rest of the family doesn’t have to worry about her, and the grandchild has a place to live for free while figuring out what they’re going to do next. Everyone wins, right? Not so fast! The typical scenario goes like this:

Grandma has been living at home without supervision for a long time but then does something that scares the family often enough that they decide she needs more help. They offer this great arrangement to a granddaughter who is currently unemployed, just got divorced or never married and has no children. She’s the one person in the family with the fewest responsibilities and the greatest need, and she loves grandma, so she says yes. Nobody including the granddaughter thinks that grandma needs more than a few hours of assistance a day because, after all, she’s been living alone up until now. It looks like a pretty easy assignment.

So granddaughter moves in and the first thing she sees is that it takes grandma three hours to take a shower, get dressed and have breakfast (if she does any of these things at all.) Nobody has been around to see this and grandma always said she was fine and didn’t need any help. She was always dressed by the time the family saw her and she still had her social skills except for the obvious memory lapses so it appeared everything was going okay. But now granddaughter sees how hard things are for her and thinks, “Oh my goodness, this is terrible. I can’t let her struggle like this!” So she does the compassionate thing and helps grandma shower, get dressed and undressed and makes all her meals in addition to whatever else the family assumed she’d be doing.

Then granddaughter finds grandma’s handbag in the dishwasher when she’s cleaning up one day. She sees that grandma cannot remember the sequence of events needed to make a peanut butter sandwich. She sees that grandma doesn’t remember how the microwave works and leaves the heat turned up on the stove all day or the water running. Not only that, grandma starts demanding more and more attention—some of it she needs, some she just expects, sometimes it’s once or twice in the middle of the night. Sometimes she doesn’t know who the caregiver is and yells at her for invading her home or accuses her of stealing items she continually misplaces. Granddaughter was only supposed to do some light housecleaning, make sure medication was taken correctly, make the evening meal and be available if grandma needed her at night. She was going to take community college classes or get some job training but now she’s afraid to leave grandma alone during the day. Can someone who acts like this be trusted alone by herself? Could she even remember to dial 911 in an emergency? In almost no time at all the caregiver is a prisoner in the home, she has no time to do what she needs to do about her own life, she starts asking for help, and the family doesn’t understand why.

Then I hear the following complaints: “What’s her problem?!! She has free room and board! I have to work hard to put food on the table for my family and all she has to do is sit around and give grandma her meals and medication. Grandma was getting dressed by herself before! She must be making her dependent. And, personally, I think she’s just trying to take advantage of all of us. Grandma says she’s been stealing from her! Can you imagine that? The nerve of her! She just wants a free ride!” This is not a win-win situation.

Before arrangements like this are made the family needs to know a few facts.

First, everyone needs education on the typical course of the illness Grandma is diagnosed with. Read The 36-Hour Day or some other comprehensive dementia-care classic. Even those who don’t plan to do any hands-on care should know what kinds of things the hands-on caregiver is likely to encounter so they know what to expect.

Second, it’s important to be aware of the value of the services a live-in caregiver provides. One home care agency we work with (in Santa Cruz) charges $265 a day for a 24-hr live-in assistant. The same agency charges $18/hr for shorter lengths of time. Other homecare agencies charge a lot more. If you advertise through the newspaper you might find an independent home-care worker who will charge $12-15/hr but no matter how you do the math, daily live-in help is worth a lot!

But getting free room and board is worth a lot, too, you say? Again, let’s do the math! A typical studio apartment or small one-bedroom in the city of Santa Cruz rents for between $850-1200 a month. Shared housing (two or more people sharing a multi-bedroom house) runs between $550-800 per bedroom (although a few “bargains” exist in converted storage sheds or by choosing to live in a more remote or run-down location.) If the caregiver has a private bedroom, all utilities paid, and access to the entire house and yard, in Santa Cruz that work exchange could be worth about $750/month or more. At $15/hr, $750 will buy you 50 hours/month of homecare services or 12 hours/week. In lower rent districts, the number of work exchange hours would be even less. But this is family, you say? OK, but even if the service is valued at the minimum wage of $6.75, that’s 111 hours/month or less than 25 hours/week. Under any circumstance, for their basic health and well-being, the caregiver should still have a few days or evenings off.

If a family member cannot be trusted to live in their home alone anymore, it’s important to understand that, eventually, more than one person will need to be involved in their care. Live-in arrangements need to include regular time off and, if the time required for caregiving prevents the caregiver from having a normal part-time job, adequate compensation in addition to room and board should be provided to give the caregiver an income and a reasonable standard of living.

Making Choices About Living Arrangements for Dementia Patients

2008-05-18T19:33:00.000-07:00

The following post is an excerpt from my book The Spiritual Journey of Family Caregiving available directly from me, autographed, for $14.95 plus shipping.

To Move or Not to Move

I moved this past month and coincidentally (or not) almost all of my new clients this month have been grappling with issues related to moving. Should I move my mom in with me? Should I move closer to her? Should I be looking for a nursing home or an assisted living facility for my relative? How can I avoid moving my spouse? These are big questions with few simple answers. Moving is stressful even under the best of circumstances but when dementia is part of the picture some kind of change in living arrangement is almost always absolutely necessary as time goes by. This is such a big issue we’ll be looking at various aspects of it over the next few months. I hope it helps sort things out for those of you grappling with this very challenging subject.

The Choice to Keep a Loved One at Home

This is by far the most popular choice, the one most people say they want. And yet, with Alzheimer’s Disease and other progressive dementing illnesses, it is a choice that many people will say is impossible. The Number One complaint I hear from caregivers is that somebody they trusted tried to convince them to place their relative despite their wish to do otherwise. Instead of receiving help in how to keep their relative home they heard “You can’t expect to be able to do this! It’ll kill you!”

Please understand the love and concern behind such a statement. According to the Journal of the American Medical Association (JAMA), in an article printed a few years ago, dementia caregivers over the age of 60 die at a much higher rate than people who are not caregiving. And yet, a new study recently published in the New England Journal of Medicine found that a year after the death of an Alzheimer’s patient, hands-on caregivers were less depressed than those who moved their loved one to a nursing home. Even though taking care of a person with Alzheimer’s Disease is known to be harder on people than taking care of someone with cancer or many other diseases, death appears to bring closure for caregivers while institutionalization can bring guilt and loneliness. In my work with family caregivers I’ve noticed that if the caregiver has enough help to handle the stresses involved, caregiving at home brings the highest sense of satisfaction. There’s the pride and increased self-esteem that comes with the completion of any hard job and relief that the journey is over. Hands-on caregiving also gives the opportunity to heal old wounds or make amends for past behavior.

What you most need to know is that most of the time caring for someone with dementia at home CAN be done and—if you are willing to do whatever it takes—it is often the best solution for all concerned. The key, though, is being willing and able to do whatever it takes.

Are you willing to ask for help?
Are you willing to make changes in your home environment and normal routines?
Are you willing to accept help from wherever it comes (family, friends, neighbors, church members, and community agencies) even if you would prefer that your problems be kept in the family?
Are you willing and able to have care workers in your home 24 hours a day at the very end?
Are you willing to deal with incontinence, difficult behaviors and physical disability for as long as it takes, even 10-15 years?
Most importantly, are you willing to do whatever it takes to take care of yourself so you are able to be a caregiver as long as you desire?

You CAN do this work if it’s your highest heart’s desire. The first caregiver I met through the Alzheimer’s Association was a woman in her 90s who proudly cared for her husband at home until he died. I’ve met caregivers so frail I couldn’t believe they weren’t patients themselves who steadfastly stayed the course. They usually (but not always!) have a patient who is sweet and appreciative, they accept help wherever it comes from, and they know in their hearts, without any doubt, that this work is their highest calling.

Not everyone is so lucky.

Some patients are abusive, keep the family up all night, wander, or have a history of having been so difficult throughout their lives that people who could have helped stay away. If solutions are not found for these problems, home care can become a nightmare.

Some people don’t have family members who can help, refuse to ask assistance of neighbors or friends and can’t or won’t pay for services. Some people have chaotic work schedules, are raising small children, and can’t meet the needs of someone with severe and worsening dementia as time goes on without a lot of help. Some have health problems of their own and others have made choices that make long-term caregiving an impossibility. Then different solutions have to be found.

But let’s assume, for this article, that you’re going to make this choice. What needs to happen to make that successful? The following list of suggestions is the best place to begin no matter what decisions you make about caring for your relative but they are absolutely essential for anyone planning to care for a loved one at home.

1. Find out everything you can about the typical course of the illness or conditions you are grappling with. What are the most likely issues to arise? What is the worst case scenario? What agencies provide services you might need? Where can you get more information?

2. Call a family meeting. Include your patient if they are still capable of making choices and planning for the future. The purpose of the meeting is to educate people about the disease and make sure everyone is on the same page when it comes to what’s coming next. Choices will have to be made about care and who can provide it or pay for it. If your patient will need 24-hour care, eventually, the job will not be possible to do at home if it falls to one or two people alone.

People need to sleep, eat, get plenty of exercise and social contact and have ways to find enjoyment in life. A plan that does not include an adequate night’s sleep and time off for rest and recreation is not a realistic plan. How will the family divide the work or find and hire workers to supplement the work family members do? What community services is the caregiver or patient eligible for? What will your insurance plan cover? What resources do you have to pay for care (rainy day savings, a line of credit or a reverse mortgage on the house, etc.) Is there an extra room for a care worker to spend the night or can family members take turns doing night care duty? Will people need training to handle incontinence, lifting and helping the patient move from a bed to a chair, or managing difficult behaviors? There needs to be a contingency plan made for the worst case scenario.

If you don’t have all the information you need at this first meeting, split up the task of finding the information and schedule more meetings until a plan of action is in place. Expect that the plan will change because the true course of the illness is what will dictate the actions required and that can never be predicted 100% in advance. But at least you will have talked about possible scenarios and will have done the advance planning required to allow your most desired outcome a chance to come true.

3. Based on what was discussed at the family meetings, make any needed appointments with attorneys and/or financial planners. You need to know how to invest or free up money wisely and legal documents need to be written that will allow a person you designate to make necessary decisions for you and your loved one should one or both of you become incapacitated and unable to make decisions for yourself.

4. Learn to let go and share the caregiving with others before you think you “need” to. Your loved one needs to get used to receiving help from others BEFORE a crisis forces such a change to occur. Get in the habit of having time off every week for your own interests. Most people with dementia become very dependent on the person who provides them care. Don’t let that responsibility be yours alone!

5. Make taking care of your own physical and emotional health your highest priority. Forgive me if you’ve heard this before but, as on an airplane, you must put your own oxygen mask on first before attempting to help other people. Create an enjoyable routine that includes adequate rest, exercise, nutritious meals, social contact and recreational activities. If/when caregiving activities start to eat into that time a big red flag should come up for you. Never skimp on these activities except in an emergency and know that an “emergency” that lasts more than a few weeks is not an emergency—it’s time to make a change in how caregiving is done and how much help you need to have.

6. Join a support group either in person or online. You don’t have to tough it out on your own even you have no family or friends nearby. A group of people who understand what you are going through can even be a better source of support than long-time friends who don’t know how to help in exactly the way you need. In a support group you’ll make new friends, share some laughs, maybe even create a caregiving cooperative to spread the work around and lighten the load. And there’s nothing like getting input from a variety of sources for inspiring you with how human creativity can come up with solutions for just about any challenge you may encounter.

7. Keep a notebook with all the information anyone would need to provide care for your loved one inside. List all the medication he or she is taking, what they are for and how and when they need to be taken. Have emergency contacts with social security numbers, Medicare and MediCal information, health insurance numbers and anything else a person filling in for you would need to have in an emergency.

8. Call family and friends regularly and keep them informed of what’s happening. Keep them involved by sharing your concerns and help them help you by planning respite breaks or by accepting their offers to be of assistance in other ways. A home-cooked meal brought over with a loving smile can go a long way when times get rough. Say “yes” when people ask to help and insist that they let you help them.

Using Family Caregiving An Excuse

2008-05-16T20:58:00.000-07:00

Dare I bring this up?

Is there ever a possibility that a person is doing family caregiving—excessively, that is—in order to have something to blame for not living their own life?

I had this experience several times when I was a Family Caregiving Consultant: I'd be listening with great sympathy to a caregiver complain to me about how much she or he resented the inordinate amount of work family caregiving took in their lives, how it prevented them from having what they wanted or needed, and how very very angry they were about it. We'd go through the usual intake interview, I'd explore multiple options with them for how they could get more help or make changes in their caregiving situation . . . and bit by bit I'd realize that they NEVER followed through on anything we talked about.

A counselor isn't supposed to take these things personally and heaven forbid we get mad. But not that long ago a light dawned for me: they didn't want to change anything because if they did they'd have to face the real demons in their life. Grief, disappointment, resentment, fear and pain left over from the past that held them back from doing the things they wanted in their lives anyway.

Easier to blame Mom for not accepting help or to blame the family and friends who aren't doing enough than to say "I'm sorry Mom. We have to get help, there's no choice—I'm not available as much anymore. (I'm going to school, I need a job, I'm having a baby, etc.)" Because that means...

Now I don't mean to be insensitive here. A lot of us engage in this behavior. I do it myself at times. But, seriously, is caregiving for mom or dad REALLY to blame for you not living the life you want (and I know this post does not apply to everyone!)... or is it the excuse?

Is It Really that Hard to Find Good Paid Help?

2008-05-15T20:37:00.000-07:00

The following blog entry is an excerpt from my book The Spiritual Journey of Family Caregiving, available for sale directly from me.

Most caregivers I meet report trouble in finding qualified paid caregivers to take care of their relatives. Nursing homes and in-home support agencies report similar difficulties. In fact, we appear to be in the midst of an insurmountable crisis in caregiver support in this city... but is this really the whole picture?

Most of my clients do not need skilled nursing care for their relative. They just need respite, someone to be with their relative and keep them safe while they take a break or go to the grocery store. They need someone with the ability to follow directions, make a lunch, wash some dishes, take the patient for a walk, or sit and read a book while the patient takes a nap. Everybody wants an experienced person with credentials but what most people need most is a “patient-sitter.”

One of my clients has had no trouble finding the help she needs. She hires college students to take her mom to her physical therapy appointments, do some light housework, run errands, or simply sit and do schoolwork in the living room so her mom will not be alone when she needs help getting up from a chair or going to the bathroom. She can leave her mother for long periods and gets all the respite she needs, knowing that in an emergency someone with the ability to call for help will be there. Her college students know nothing about dementia but they learn quickly. She borrows books and videos from the Alzheimer’s Association to teach them what they have to know. It’s not perfect—some people don’t work out—and she’s lucky that her mother is not combative and seems to enjoy the company. She’s also not able to depend on only one person for all the times she needs help—she’s had to hire several who are available for different days and times. It’s a lot more work than simply hiring an agency; but the payoff has been terrific.

The going rate for hiring a “patient-sitter” (in Santa Cruz, CA in the year 2001) is $8-12/hour, depending on experience. Is it worth it? Well... was it worth it to hire a teenager with even less life experience to babysit when you wanted a night out then? If you are willing to take the time to provide training it will be safe enough and well worth the effort.

For those able and willing to take advantage of it, there’s a large relatively untapped market for caregiver support:

College Students. To hire a college student from a local college or university, call the school’s Student Employment Office.

Mature Women. Women attempting to re-enter the workplace after raising their families often make good caregivers. Contact the local YWCAs, college Women’s Centers, and state and local employment agencies and temp agencies such as Manpower or Kelly Services.

Church Members. Put a flyer on the bulletin board or post a notice in the church bulletin.

Retired Persons. Post a flyer in mobile home parks, retirement communities, senior centers, or libraries.

Healing Through the Human Energy Field

2008-05-13T19:22:00.000-07:00

The following blog is an excerpt from The Spiritual Journey of Family Caregiving.

In the July/August 1998 edition of the American Journal of Alzheimer’s Disease a very interesting article was published on the use of a new approach for increasing the quality of life for both patients and caregivers. The article described in great detail the results of a study conducted at the Alzheimer’s Resource Center of Connecticut in 1996 and 97. Using this approach, staff at this 120 bed skilled nursing facility discovered that a profound state of relaxation could be induced in a patient within 5-10 minutes without the use of drugs or any invasive techniques. Even fairly agitated patients who were rocking or calling out from their beds could be calmed in a reliable and rapid way. Fewer medications needed to be used, and positive feelings between patients, staff and family members increased. What was this new treatment? An old one—”laying on of hands”—in a new guise called Therapeutic Touch.

It may seem unbelievable or like religious hocus pocus but evidence is mounting that ancient healing arts which focus on the human energy field like acupuncture, chi gung, tai chi and energy healing, have positive and demonstrable benefit. I’ll be focusing on two forms of energy healing in this article that appear to have particular benefits for dementia patients and their caregivers, Reiki and Therapeutic Touch.

Therapeutic Touch

In Therapeutic Touch the practitioner does not actually touch the patient. The practitioner holds their hands a few inches away from the patient’s body and consciously directs a flow of energy into and around the patient while in a calm meditative state. Sometimes, visualization is used by both the patient and practitioner to intensify the focus of healing but that is not necessary. A patient does not have to be cognitively aware of what Therapeutic Touch can do for it to be effective. In fact, some of the most successful treatments have been performed on babies and people in comas. This makes it particularly useful for dementia patients, especially those who don’t like to be touched.

Therapeutic Touch was developed by Delores Krieger, a professor of nursing with a special interest in neurophysiology. She documented her research on the use of this method so well that Therapeutic Touch classes have been added to the nursing curriculums of 80 colleges and universities in the United States and abroad including major university medical centers such as Columbia-Presbyterian Medical Center in New York. Therapeutic Touch has been used to reduce pain, accelerate healing, relieve anxiety, and help terminally ill people face death. The Connecticut study mentioned above, however, was the first extensive study on the use of this approach with Alzheimer patients.

Therapeutic Touch is based on the idea that there is a universal life energy that supports all living things and through which all matter and consciousness are interconnected. This core belief is the foundation of most eastern therapeutic systems. This energy is known as “chi” in China, “ki” in Japan, and “prana” in India. Practices such as yoga, pranayama, chi gung, and tai chi as well as therapeutic approaches such acupuncture and acupressure all work with the theory that illness is caused by an imbalance or disruption of this energy flow and that balancing life-energy flow throughout the body is the key to good health and long life. The practitioner of Therapeutic Touch learns to sense energy imbalances in the energy field that surrounds a person’s body and uses stroking motions and visualization to smooth the energy out. It takes practice to learn and an intensive training program.

Reiki

Reiki is a form of energy healing from Japan with roots that some people say stem from ancient Tibet. While it has been practiced for far longer than Therapeutic Touch, Western research on its effectiveness has only just begun. Preliminary studies, however, have produced similar results.

Reiki is interesting to me professionally because it is extremely easy to learn and easier to do than Therapeutic Touch. It is also easier to use on oneself than Therapeutic Touch so it can be taught as an effective tool for self-care. The practitioner’s hands are placed gently on the body or an inch or two away. There are twelve basic hand positions that are done in sequence which cover all major areas of the body. Practitioners do not need to feel the energy imbalances for Reiki to work; they simply hold each position for a specific period of time. The practice does not require a meditative state or extensive visualization. In fact, it can even be used by a caregiver in a highly stressed state of mind. I learned Reiki five years ago and use it most often for self-care on those days when my emotions need soothing. It has a comforting quality that never fails to leave me more relaxed, centered and calm.

What makes Reiki unusual from a Western perspective is that the practice is passed on through an ancient healing ritual in which the participant is spiritually attuned to the power of the practice. My intellectual mind couldn’t make sense of this but I found it an interesting cultural experience that added to my enjoyment of the class. Even though Reiki is considered spiritual in origin it is not part of any particular religion and does not require one to adopt new religious practices or beliefs. However, for those who grew up without spiritual beliefs or for those that were taught that only Christ could (or should) heal, this practice would challenge some very basic long held beliefs.

I use Reiki to release tension on those nights when I can’t sleep. It has been effective in my life for headaches, minor aches and pains and other stress-related symptoms. Reiki practitioners report that it can decrease the need for medical intervention, decrease or eliminate side effects with medicines, reduce a patient’s recovery time from an invasive procedure, or strengthen a patient’s immune system. Two hospitals in the community where I live have arranged to have Reiki practitioners work with both patients and staff.

Follow-up Commentary:
Not long after I wrote the above article I convinced my agency to let me offer an introductory Reiki workshop for family caregivers. It was a great success! Only 5 people participated, ranging in age from 45 to 90, but they all succeeded in learning the techniques and three of them reported later that they were using Reiki with themselves and their patients (the other two didn’t report back except to say that they really enjoyed the experience of learning it). One even calmed her husband in the middle of the night during a highly agitated period when he was terrified and threatening to hurt her. She used the hand positions recommended in the class and in less than 10 minutes he let out a sigh of relief and settled back down.

Longevity and Mental Health

2008-04-23T10:49:00.000-07:00

In the latest copy of AARP magazine there's a wonderful article about the longest-lived people in the world and what aspects of their way of life that might have led to such long healthy lives. The article focused on a research trip to the Nicoya Peninsula in Costa Rica, one of the places on the planet with an unusually high proportion of people who reach the age of 100 or beyond. They interviewed as many centenarians as possible and came up with a list of several lifestyle practices they had in common. Here are a few of the ones that caught my attention:

• They had a strong sense of life purpose, they felt needed, and had the intention of contributing to the greater good.

• They live with their families, derive satisfaction from helping other family members, have a strong sense of belonging and of being valued in the family unit, and are supported by other family members in return.

• They eat lightly and tend to eat food combinations with a high nutritional content.

• They work physically their entire lives and enjoy their daily work.

• They share a common set of cultural and spiritual traditions and keep close relationships with neighbors and friends who they socialize with frequently.

• Despite living in conditions those of us in the United States would describe as poverty-stricken and unsatisfactory, as a rule these people appreciate what they have, watch for the silver lining in bad situations, and expect to receive what they need. They are optimistic in their point of view and believe in a caring and loving God who watches out for their best interests.

Berry Good For the Brain—The Role of Antioxidants

2008-04-06T21:20:00.000-07:00

The following article is reprinted from my book The Spiritual Journey of Family Caregiving. The original article was published several years ago in a newsletter for Family Caregivers:

In the last few months I have written about Ayurvedic herbs and spices, in particular bacopa and turmeric, that appear to have a beneficial effect on the brain. Both of these herbs are antioxidants. The role of antioxidants has only just begun to be thoroughly researched but the implications for people with age-related brain impairment is potentially enormous. In this article I’ll attempt to explain what antioxidants are in simple terms and mention some tasty ways to add them to your life.

Why We Need Antioxidants

In the normal processes of digesting food and fighting germs and infection, the body produces tiny particles called free radicals which, in small quantities, are relatively harmless. We’re talking about something that happens on the atomic level. Free radicals are electrons that are pulled off their orbits around the nucleus of an atom and float free to interact with other atoms. There is nothing terribly frightening about this—it happens all the time. However, in sufficient quantities these particles can wreak havoc in our bodies because they have a magnetic charge that can pull electrons off of other atoms with which they come into contact. Those free radicals can destabilize even more atoms and, if the process isn’t stopped, eventually you can wind up with cell or tissue damage.

Luckily, antioxidants are designed to protect the body from this destructive cycle. When they meet a free radical they donate an electron to neutralize its electron-stealing tendencies but don’t become free radicals themselves because they have a highly stable atomic structure. Antioxidants are abundant in a healthy person who eats a varied diet rich in vitamins and other nutrients.

Unfortunately, when free radical production becomes excessive or antioxidants are missing, damage can occur. Poor health and environmental factors such as pollution, radiation, cigarette smoke and herbicides can all lead to excessive free radical production. The damage from this accumulates with age.

Eat Your Fruits and Vegetables!

The most abundant antioxidants found in the body are Vitamins E and C. Vitamin E is thought to be such an effective antioxidant that it has become standard practice to prescribe it in the early stages of Alzheimer’s Disease and cardiovascular-related dementia. It appears to reduce the amount of plaque formation in arteries and veins and prevents tissue damage in the brain. Studies have shown that use of Vitamin E slows the course of Alzheimer’s Disease and may even reverse the effects of age-related memory loss in otherwise healthy people. Vitamin E is found in nuts, vegetable oils, wheat germ, whole grain cereals, eggs, and dark green leafy vegetables.

Vitamin C works synergistically with Vitamin E. It appears to have a particularly useful effect in combating free radical production caused by pollution and cigarette smoke and may offer some protection against cancer. Vitamin C is most abundantly found in fresh fruit and vegetables.

For most people adding Vitamin E and C supplements to the diet is probably not harmful but doctors warn against mega-doses because the long-term effect of large doses has not been determined. It is also likely that other nutrients found in natural sources of antioxidants may act synergistically with E and C to create beneficial effects. So do like mother told you and eat your fruits and vegetables! 5-8 servings a day is what nutritionists recommend. A serving is approximately the size of a tightly closed fist.

What food has the highest source of antioxidants?

Blueberries! The U.S.D.A. reports blueberries have 40% more antioxidant than the next highest foods, strawberries and spinach. Studies on rats at Tufts University showed that adding blueberry extract to the rats’ diet actually reversed age-related mental declines and improved balance and coordination. Previous studies have shown that blueberries can help lower blood pressure and improve vision.

Fresh berries are excellent but lightly cooked ones have an even greater effect. Try adding blueberries and nuts or wheat germ to your favorite muffin mix or pancakes. Here’s a quick and easy recipe you might enjoy:

Blueberry Clafoutti

4 c Blueberries
1 c Milk
1/3 c Sugar
2 Eggs
2 tsp Vanilla
1 1/4 c Flour
Dash salt
Grease and flour a baking dish or pie plate. Add berries. Combine milk, sugar, eggs, salt and vanilla in a blender. Add flour and blend until smooth. Pour over berries. Bake at 375º for 45 minutes or until golden and puffy.

Another Reason to Eat Your Fruits and Vegetables

According to a study by researchers at Boston University and Tufts University, people with high levels of homocysteine in their blood have twice the average risk of developing Alzheimer’s Disease. Homocysteine is an amino acid which rises unacceptably in the body when a person’s diet is rich in animal protein but low in fresh fruits and vegetables. It is also associated with a higher incidence of heart disease and stroke. Fresh fruits and vegetables contain B vitamins and folic acid which help convert homocysteine into other amino acids which are not harmful.

More About Elan's Old AN1792

2008-04-02T15:11:00.000-07:00

Sorry to all those who feel upset about the old news I innocently reprinted in my previous blog. I had no idea it was such a sore subject.

Back when I worked for the Alzheimer's Association Elan's anti-amyloid drug trials were very exciting to me and everyone else in the industry. In fact, I gave talks about it and believed we were certainly on the way to victory in the fight against Alzheimer's Disease. I still do, in fact, and understand that Elan Pharmaceuticals is still one of the leaders in the pack.

I wrote about those old drug trials being halted in the context of this article about turmeric way back then because I wanted to let the people in my caregiving groups know that even though what seemed like the "great white hope" of coming drug therapy at that time was temporarily delayed, other avenues for helping themselves and their patients might be already available for those willing to do more than pop a few pills.

Of course, the research on alternatives to drug therapy is far from complete, the money to fund this research is hard to come by (there's not enough profit in it), and there are multiple factors that need to be explored. Drug therapy, to be perfectly honest, might be the most likely solution for the millions of people this disease is already affecting. But I believe, and many other people do as well, that healthier approaches to family living -- staving off isolation, feelings of worthlessness, and depression among other things -- as well as healthier eating and other habits could have a far greater impact on preventing and reversing the early stage impact of this disease than anything else.

That's part of my focus in this blog and in all the work I do. I certainly meant no harm to Elan or anyone else.

Currying Your Way to Health

2008-04-01T19:49:00.000-07:00

Please note: This article was originally published 5 years ago. All information stated was correct as of that time. Please -- before reprinting my references -- read the whole article and please stop sending me comments telling me to check MY facts. Somebody has been quoting this article out of context on a site about Elan Pharmaceuticals to stir up trouble. I'm sure Elan and Pfiser and all the other Alzheimer drug companies have lots of new pharmaceuticals that they're testing and plan to make available as soon as possible. This does not detract from the fact that turmeric -- the point of this article in the first place -- has been shown to have beneficial effects.

India has the lowest rate of Alzheimer’s Disease in the world. Studies have shown that in some Indian villages the incidence of Alzheimer’s Disease in people over the age of 65 is just 1%. In the United States the incidence is close to 10% and rises significantly as people age. New research reported last month [this article was originally published several years ago] by the Society for Neuroscience in San Diego, CA shows that eating curry—or more specifically, turmeric—could be at least one of the factors that makes the difference.

Turmeric is the ingredient that makes curry yellow and it is in almost everything the typical Indian villager eats. The chemical constituent of turmeric that seems to have the preventative or healing effect is called curcumin. A team of researchers from the University of California in Los Angeles has been doing Alzheimer’s research with rats genetically-altered to develop the build-up of amyloid plaques associated with Alzheimer’s Disease in humans. It was found that middle-aged and elderly rats fed curcumin-rich diets had half the amyloid plaque build-up of other rats. They also outperformed rats fed a normal diet in maze-running tests, and their brain tissue showed significantly less inflammation, another symptom associated with Alzheimer’s Disease. Although more tests need to be done to prove the ingredient’s effectiveness in humans, researcher Dr. Sally Frautschy said she believed curcumin had potential as a treatment at least for the prevention of the disease, particularly when combined with anti-inflammatory drugs such as ibuprofen.

Turmeric has already been proven to have both anti-inflammatory and antioxidant effects. It is widely used in India as a treatment for arthritis, infection, and various kinds of cardiovascular disease. It lowers cholesterol and seems to have a beneficial effect on the liver. New research also shows that it can be used to block the growth of cancer cells.

Researchers say it will be many years before curcumin is thoroughly researched in the West and a drug is manufactured for patient use although turmeric has been used in India’s Ayurvedic medicine for thousands of years. Meanwhile, [this article was printed in 2002] Elan Pharmaceuticals has announced that they have temporarily suspended trials of AN1792, their anti-amyloid drug, because four people in the test group in France developed a serious central nervous system inflammation.

So, should we all start eating curry?

Nobody in the West is recommending it yet but Indian research shows that adding as little as a teaspoon of turmeric to one’s daily diet has a beneficial effect. The only people who might want to avoid turmeric are those with blood clotting problems or those taking anti-coagulant medication. A small amount added to vegetables or eggs makes a nice seasoning. Large quantities, however, taste bitter and can upset your stomach so if you want to experiment with this, don’t overdo it!

This blog is an excerpt from The Spiritual Journey of Family Caregiving, for sale now through Lulu.com as either a printed book or e-book download.

Elephants Never Forget—They Eat Brahmi

2008-03-27T20:46:00.000-07:00

The word “Brahmi” means the creative energy or intelligence of the Universe. It is used to refer to plants that appear to personify this energy by revitalizing the sensory organs of the body, in particular the nerves and brain cells. Sounds pretty good, huh? Want to know how to get some of that? Let’s take a look at the two herbs most commonly given this designation that we can find in the United States today: bacopa monniera or bacopa herpestis (known as bacopa) and Centella asiatica or Hydrocotyle asiatica (known as gotu kola or pennywort). Gotu kola is supposed to be a favorite food of elephants in South India.

Bacopa

Bacopa is considered to be the most important Ayervedic herb for treating brain problems and age-related mental decline as well as for improving cognitive processes such as memory. It is prescribed for all body types in the Ayervedic tradition because of its balancing effects.

The Central Drug Institute of India, established in 1953 to create formal scientific studies to determine how Ayervedic herbal remedies work, has studied bacopa. They found that the herb contains chemicals that help repair damaged neurons by augmenting kinase, the protein involved in the synthesis of new neurons to replace old ones. It has a strong antioxidant effect (similar to Vitamin E) that helps the body clean up toxins that damage DNA and cell membranes. It also aids blood circulation throughout the body, a known factor in the development of dementia for some people. Studies with rats have conclusively shown that rats treated with bacopa learn new skills faster than control subjects and retain the information longer. Preliminary studies with humans indicate similar effects.

Bacopa is currently being used in India to treat ADD (Attention Deficit Disorder), age-related mental deterioration, and concentration difficulties due to stress. It has a mild sedative or nerve-calming effect and has been used successfully by people with irritable bowel syndrome and by those recovering from nervous breakdown. Unlike other herbs with sedating properties, however, bacopa increases mental clarity while reducing nervous anxiety. Bacopa is commonly taken in tea with sweeteners added or in capsule form. It can be used as a salad vegetable or added to soup but by itself it is very bitter.

Side Effects and Precautions: Bacopa is a diuretic and should not be used with diuretics or anti-diabetic drugs without a doctor’s supervision. It should not be used with methotrimeprazine, a potent CNS depressant analgesic. Other central nervous system drugs have not been tested for possible interactions at this time. Use of aminoglycoside antibiotics such as clindamycin increases bacopa’s sedating effect By itself it has no known side effects or toxicity at normal dosages.

Gotu Kola

Gotu Kola is thought of as a spiritual herb in Ayurveda as well as having superior rejuvenating effects throughout the body. It is commonly used in India to improve meditation. It is said to develop the crown chakra, the energy center at the top of the head, and to balance the right and left hemispheres of the brain. Traditionally, gotu kola is used to strengthen the immune system, the adrenals and the circulatory system, and to promote healthy skin.

Studies have found three main chemical constituents in gotu kola. One has an antibiotic effect. The second, similar to Bacopa, is diuretic and slightly sedating. The third is a strong anti-inflammatory agent. It is also high in Vitamin B and K, magnesium, and calcium. It has been found to be extremely effective for wound healing and tissue repair, even being used in India to treat second and third degree burns. Studies with rats show that rats fed gotu kola retained new information significantly longer than control subjects. Preliminary results in one clinical trial with mentally retarded children showed increased scores on intelligence tests. Gotu Kola can be found as a tea, capsules, and tincture.

Side Effects and Precautions: Although widely used for skin ailments, gotu kola has been known to be a skin irritant for some people. It can cause headaches or elevate blood pressure in high doses and might create narcotic stupor with extreme usage. Do not use during pregnancy or if you have an overactive thyroid. Avoid using it with sedative drugs as the effect may be cumulative. It should also not be used with antidiabetic or cholesterol-lowering medications without a doctor’s supervision. Older adults should start with a lower dose and increase it if necessary.

Gotu kola should not be confused with the kola nut which contains caffeine and has a stimulating effect. Gotu kola is not the same plant and contains no caffeine.

Should you use either of these herbs?

Well, it always pays to consult your doctor to make sure they won’t conflict with medications you’re already taking but after doing that why not consider it? To be perfectly honest, there is no dementia medication on the market today (2005) that offers more than temporary symptomatic relief while allowing the disease to proceed unchecked. These herbs, especially bacopa, appear to actually repair damage and improve brain function. Follow your instincts. If you try it let your doctor know and monitor how it works and how it makes you feel.

The previous article is an excerpt from The Spiritual Journey of Family Caregiving. Click here to buy it now.

How a Neuroscientist Has a Stroke

2008-03-26T22:17:00.000-07:00

http://www.ted.com/talks/view/id/229

"Neuroanatomist Jill Bolte Taylor had an opportunity few brain scientists would wish for: One morning, she realized she was having a massive stroke. As it happened -- as she felt her brain functions slip away one by one, speech, movement, understanding -- she studied and remembered every moment. This is a powerful story about how our brains define us and connect us to the world and to one another."

Way interesting! Very unexpected and shockingly spiritual. The physiology of spirituality? Or what? Check it out!

Book of the Month!

2008-03-26T14:43:00.001-07:00

The Spiritual Journey of Family Caregiving has been named "Book of the Month" by the Parkinson's Disease Association of San Diego.

And it's now available on Amazon.com, Barnes & Noble and Borders Books online . . . although I receive more of a royalty if you buy it from Lulu.com.

Mama Love Perfume

2008-03-25T18:27:00.000-07:00

In a previous article I mentioned that I started doing my current work as a Spiritual Counselor and Flower Essence/Aromatherapy perfume maker directly as a result of the work I did as a Family Consultant. All the perfumes I make were designed for healing benefits. Several of them are appropriate for family caregivers and their patients.

The first one, "Mama Love for Healthy Boundaries," was originally named "For Balanced Caregiving". I specifically designed it with family caregivers in mind. Anyone who spends a lot of time helping others through difficult experiences needs to know how to be loving and kind yet able to remain clear-headed, grounded and firm in their own boundaries. How else can you give to others without depletion? This formula uses two different kinds of Yarrow flower essence (described in the previous article) and Yarrow essential oil, with Sandalwood and Patchouli.

"Mama Love for Releasing Worry and Fear" has been one of my best-sellers. It's a good one for both caregivers and patients. (Be sure to try a small amount first to be sure.) Try rubbing some on bunched up shoulders or back muscles, pour a tiny amount into a bath, or add several drops to a spray bottle with water and mist yourself or your patient. By the way, I have no idea if using this perfume as a spray with an agitated patient would help calm them down. If you'd like to try it send me an email. If you have a patient who tends to have episodes of extreme anxiety and agitation I'll send you a bottle free of charge as long as you promise to let me know how it works for them.

"Releasing Worry and Fear" can be a great sleep formula if anxiety is at the root of your insomnia. Another great sleep formula is "Mama Love for Restful Sleep." It's not like a sleeping pill -- for most people it won't put them right down. And for chronic cases of insomnia it really makes a difference if you use it twice a day -- once in the afternoon and then again before bed. The effect accumulates with regular use but it is not recommend as a daily practice for more than three weeks at a time. (It's wise to take a break from ALL aromatherapy products for a little while from time to time to gauge how your body is handling it and whether you even need it anymore.) "Restful Sleep" contains Chamomile, Nicotiana and Spikenard for their powerful healing effects.

Flower Essences for Family Caregiving, Part 2

2008-03-25T17:37:00.000-07:00

Photo by Richard Old, www.xidservices.com

Please be aware that the information contained in this article and throughout this site are meant to provide the reader with a wide array of choices. The information provided should NOT be construed as medical or psychiatric advice and should not be assumed to be an adequate substitute for conventional medical care.

An Excerpt from the Spiritual Journey of Family Caregiving:

On my off hours I like to make all natural perfume for both sweet-smelling and healing effects by combining essential oils used in aromatherapy with flower essences. Flower essences are rarely used in perfume—they have no smell—but I have come to depend on them as one of my first lines of defense in working with otherwise intransigent emotional/spiritual issues in my own life.

How Do they Work?

Whenever a person has a thought, and particularly when it is an emotionally-laden thought, the body produces a vast array of neurochemicals that tell various body processes what to do next. In situations one perceives as dangerous, for example, adrenaline is produced to help us gear up to fight or run away. In other situations many other chemical compounds are produced and all these substances affect the physical functioning of our bodies in a great variety of ways. For example, studies have shown that the biochemicals we associate with depression have a great effect on the immune system. Test subjects who reported feeling depressed were much more likely to get sick when exposed to a cold virus than test subjects who were not. As you might imagine, when a depressed mental state lasts long enough the body is left vulnerable to attack by a wide variety of organisms.

Flower essences were developed over 60 years ago by the famous and well-respected immunologist and homeopathic English physician Edward Bach. Working with a wide variety of patients just after the first World War he came to the conclusion that a person’s emotional well-being and mental attitude had more to do with health and healing than any medicine he could offer.

Homeopathics work on both the physical body and the emotions. Nobody understands for sure what mechanism is involved but it appears that, like a vaccine, they actually inspire the body to produce whatever compounds it needs to counteract the illness it has contracted. Bach created both vaccines and homeopathic remedies. He was also somewhat familiar with herbal remedies and discovered through his research that flowers seem to have a specific affinity for emotional symptomology. Bach eventually left his thriving London practice to move to the country to develop safe flower-based homeopathics and the now world famous Bach Flower Remedies (or flower essences) were the result.

In my role as a Family Caregiving Consultant I am not allowed to use Flower Essences with my clients but there are many occasions in which I think they could be applicable. For those of you interested in exploring this modality here are just a few of the ones you might want to consider.

Centaury
Centaury is the classic Bach flower essence for the “wounded healers” amongst us—those who derive their sense of self-worth by taking care of others’ needs while neglecting their own. Using the Martyr archetype as a role model seems noble and is a very common choice, but it can lead to dangerously codependent behavior in the long run. For example, caregivers in this state frequently attempt to avoid a demented relative’s anxiety about allowing paid help into the house by doing what has to be done themselves. Even when the patient’s needs steadily progress to the point of needing 24-hr care this kind of caregiver dutifully tries to keep the status quo intact, compromising their own well-being and, ultimately, the well-being of the one who now depends on them alone.

Centaury increases a person’s ability to balance other people’s needs with their own. And as one begins to develop the self-love and self-respect needed from the inside out, the compulsion to serve others through excessive servitude falls away and better approaches to family caregiving can then be carried out.

Elm
Caregivers in the Elm state of mind aren’t Martyrs—they’re trying to be Supermen! They overestimate what is realistically possible, swoop in to save the day, and become overwhelmed with despair and self-doubt when it doesn’t work out. Caregivers in this condition need support to get help, using their innate leadership abilities to organize a care team that can manage the care receiver’s needs over the long haul. Elm helps them develop a more realistic point of view so they can tackle the job, feeling more rested and relaxed, and confident that what needs to be done is, with help, within their power to achieve after all.

Yarrow
When a person is constantly giving their full attention to other people, and worrying about them when they’re not actually in their sight, they never quite relax and often lose sight of their own needs. It’s normal to want to work hard to protect those we love—just think of how a mama bear fights to protect her cubs. Interestingly enough, ancient Roman soldiers often brought Yarrow with them when they went off to fight. Yarrow acts like a protective shield, helping a person bring their attention back to themselves as needed throughout the day. White Yarrow strengthens the integrity of a person as a whole, Golden Yarrow works specifically with vulnerability caused by low self-esteem, and Pink Yarrow helps people who are overly affected by other people’s emotions.

Olive and Garlic
Working with stress effectively is one thing, but what if the caregiver has already slipped into a state of exhaustion and near collapse? I had a friend come to me in this state. She worked full-time, had a father who needed caregiving help, she was still breast-feeding her young child, and had a husband who was feeling needy because of a crisis at his job. She wailed “I’m SO tired! I feel like everyone in my life is sucking me dry!” I gave her Olive and Garlic flower essences and a week later she came back, happy and full of energy. “You’re making magic potions!” she said. Within a week she had laid down some ground rules at home, decided to shut off her cell phone and let voicemail pick up after a certain time every day, she talked to her husband about how she felt and, with his increased support and understanding, was finally starting to make inroads to getting her own needs met.

Olive flower essence is specific for exhaustion and soul-weariness. It helps a person draw on inner resources for support when physical support has been lacking. Garlic gives added strength and the ability to actively resist intrusions that would otherwise do harm.

Flower Essences for Family Caregiving, Part 1

2008-03-25T16:59:00.001-07:00

I currently make my living as a spiritual counselor and healer. I also have a small flower essence & aromatherapy organic, all-natural perfume company. This might seem like a far cry from my work as a Family Caregiving Consultant but in reality it was my work at the Alzheimer's Association and Del Mar Caregiver Resource Center that directly led to the work I do today.

Most of the families I worked with were hungry for alternative resources for helping themselves and their patients. $100/month Aricept prescriptions that didn't seem to do a lot of good after the initial few weeks and months take quite a bite out of the family budget. Plus people really want to know what's best for themselves and their loved ones. What diet seems to help best? Exercise? Herbs? Vitamins? What about healing therapies? I researched many of these topics over the years and wrote about them as best as I could. I'll be sharing excerpts from The Spiritual Journey of Family Caregiving about these things over the next several weeks.

The healing modality nearest and dearest to my heart today is one of the least well-known -- in this country at least -- Flower Essence Therapy, the work of Dr. Edward Bach. Here's an excerpt from The Power to Flower, the book I'm writing today:

In 1996 I had a spiritual crisis that led to an uncontrolled psychic opening that terrified me at first and permanently changed my worldview. Intuitive capacities I used to think were the realm of psychics and mystics became my everyday experience and I had to learn a new way of dealing with life and the part I wanted to play in it. I studied medical intuition and various forms of energy healing and practiced using those skills with clients on my evenings and weekends. During the day I worked in the healthcare system as a family consultant for people taking care of family members with Alzheimer’s Disease or other incurable brain-impairing illnesses.

Many people fearfully talk about an impending healthcare crisis tied to the aging baby boom population but anyone who works with eldercare issues today can tell you that the crisis is already here. Healthcare costs are astronomical yet the amount of time a doctor typically spends with a patient has decreased while the number of pharmaceutical drug-related illnesses has gone up dramatically. According to the Journal of the American Pharmaceutical Association the cost of possibly preventable drug related illness and death in the United States more than doubled in just the five years between the initial study done in 1995 and a follow-up in 2000.

All day long for six years I heard stories about how people’s lives were being devastated by the financial and emotional burdens of 24 hour caregiving and time and again I heard the same stories of how these illnesses appeared to take hold. “Grandma was ok until Grandpa died.” “Auntie has lived alone for years and she has always been anxious. We didn’t even know she had dementia because she’s always acted this way. It’s just worse now.” “Dad was just fine until he was forced into retirement. He didn’t know what to do with his life after that and then everything started to fall apart.” I heard these stories so often that after awhile I deemed it a miracle when I came across a patient whose symptoms did not appear to result from an emotional trauma or a history of isolation, anxiety or depression.

Most of these people were so far into their illnesses that neither conventional nor alternative medicine had much to offer them. Yet doctors would prescribe medications at $100 and up per month that sometimes had serious side effects for many years at a time even though widely available drug trials had shown that, statistically, these drugs were only effective on the average of 6 months to a year. Many of the patients I met were taking 5-6 equally expensive medications at the same time for symptomatic relief of a wide variety of other health concerns.

Meanwhile at home I was experimenting with using flower essences to reverse long-standing emotional problems that I believed could lead to disease and was having interesting results. My remedy combinations never cost more than $10-20, I rarely had to take them for long, and except for the occasional short-lived intensification of symptoms just before healing (which can usually be avoided—I’ll show you how) they had no side effects whatsoever. Yet I couldn’t get people to try them. I wasn’t allowed to recommend flower essences within the confines of my day job, and even though my evening clients appeared to trust me they were too frightened to try a formula their doctor had not prescribed. Besides, who ever heard of using flowers in brandy and water for emotional relief? They didn’t understand it and from my own life experience I understood why and I knew I wanted to do something to change that.

The things that make herbal remedies a solid choice for people dealing with physical complaints could make them an equally appealing choice for people seeking help with emotional problems. However, the vast majority of Americans have little or no idea of how a physical plant substance could possibly be used to help in this way. My book will address these issues and take it further by delving into the world of psychoneuroimmunology to explain from a physiological point of view how health can be affected by emotion through its connection to immune response.

There are times when accidents or exposure to toxic chemicals or air- or insect-borne illnesses make us sick. But it has been shown repeatedly that our susceptibility to illness and our ability to recover has more to do with mental attitude and emotional well-being than any other factor. I believe that if we not only acknowledged the intimate connection between our emotional and physical well-being but gave people tools to work with their emotional distress we wouldn’t have as big a medical crisis today and most people’s medical bills wouldn’t be nearly as high. Dr. Edward Bach, the immunologist and medical doctor credited with originating Flower Essence Therapy, I’m sure would agree. He developed his flower remedies for that very purpose and intended that they be used as a system of self-care accessible to anyone without the need for extensive medical training.

The Value of Respite

2008-03-15T16:15:00.000-07:00

"To do great work a man must be very idle as well as very industrious."
-- Samuel Butler

"Sometimes, on a summer morning, I sat in my sunny doorway from sunrise till noon, rapt in a revery, amidst the pines and hickories and sumacs, in undisturbed solitude and stillness, while the birds sang around or flitted noiseless through the house, until by the sun falling in at my west window, or the noise of some traveller's wagon on the distant highway, I was reminded of the lapse of time.

"I grew in those seasons like corn in the night, and they were far better than any work of the hands would have been."
--Henry David Thoreau

For me a respite from daily work gives me a chance to remember the beauty of the world around me, to rest, fill up and get an indication of what my heart and spirit need for me to receive.

I used to make patchwork quilts. There's an old early American tradition to always put one square in upside down, sideways, or in some other way not quite right. The idea being that striving for perfection leaves no room for the unexpected to come in. God comes in through the cracks, so to speak, when we let go of doing it "right." When we let go, relax, and just let things be, an opportunity arises for God to come in.

Our way of doing things came be so harsh, damaging, short-sighted, even completely wrong. And filling up every minute with those things we harshly think we absolutely MUST do seems so virtuous, so necessary, so right, we get can get stuck in situations our Highest Guidance would never allow.

But there needs to be room for the Spirit to speak. That's why the Sabbath was created. A time to meditate, pray, check in.

Time off. . . a day of rest. . . sabbath. When was the last time you said "yes" to it?

Brief Respite

2008-03-14T18:39:00.000-07:00

Another excerpt from The Spiritual Journey of Family Caregiving. Click here to buy it now.

The word “respite” means relief, time out, rest. I spend a lot of my day helping caregivers figure out how to have time for themselves, free of caregiving duties, so they can relax, rest, and renew themselves. Sometimes the people I help have been so tied up with caregiving that the afternoon off I arrange for them is overwhelming at first. They can’t believe their good fortune... and then they don’t know what to do with it.

Caregivers report apologetically that they couldn’t think of anything to do so they took a nap or watched television or just sat and stared at the wall. I always say “Congratulations! People spend millions of dollars on psychotherapy trying to learn to stop working so hard and you did it on the first try!”

We always think that we have to be productive to be good, to be worthwhile, to earn the attention and affection of others. I had a surprising awakening on this subject myself when I made the acquaintance of a counselor visiting the United States from India. She always commented on how busy Americans seemed to be and how their busyness was tied to their feelings of self-esteem. She had taken to asking her American clients to lie down on her couch and do nothing while she stroked their foreheads and told them how valuable to the world they were, how precious they were, just lying there breathing. She would remind them of how deeply lovable they were as infants when they couldn’t do much more than that and how they were still the same precious beings they were when they were born. Her clients would just break down and cry. The concept of being OK just lying still was just so foreign.

Try turning the conditioning around: tell yourself that you are already OK and, like all other human beings, you deserve a day of rest. This used to be a normal concept—a day of rest, Sabbath, Shabbat—and you get to have this even if it’s not Saturday or Sunday.

Still need help? Try these relaxing suggestions:

Take a walk
Watch a sunset
Read a book uninterrupted
Rent a video
Write a letter
Have lunch with a friend
Take a bubble bath
Sing or dance to your favorite record
Take up bird watching
Take a class
Visit a museum
Buy some ice cream
Play with your grandkids
Play a musical instrument, draw or paint
Call a friend
Meditate or pray

And On the Seventh Day God Rested

2008-03-10T16:47:00.000-07:00

When I was a Family Caregiving Consultant it sometimes seemed like the bulk of my job was about helping people figure out how to get a break. Forget 9 to 5 living, most of my caregivers worked at least a half-time job, took care of their kids, then went over to grandpa's place to clean his house, give him his meds, make him dinner, make sure he was safe. Every day without a break. And that was just in the early stage of Alzheimer's Disease or some other progressive dementia.

Little bit by little bit the diseases progressed. At first it would all seem manageable. "I can handle this. No big deal." Then grandpa would need a little bit more. "No problem, I can adjust." Then it would progress again. And again. And again. And again without end.

One day the caregiver hears the alarm clock ring and can't make herself adjust anymore. She's sick, burnt out, unable to face the day ahead. And the caregiver thinks something must be wrong with them because what they thought was a manageable situation is now the source of complete overwhelm. What they don’t realize is that, over time, their situations have dramatically changed... but it happened so gradually it was hard to justify making a change in how things got done.

This is understandable. Supposedly, if you put a frog in boiling water it will hop out to save its life as fast as it can but if you put one in cold water and slowly turn up the heat the frog doesn’t recognize the incremental changes until it’s too late and dies.

I recently went through a period of enforced respite, not from caregiving, but from my job. I was sick with the flu. You know the kind that lays you out flat on your back and keeps you that way long past the point when you think you should have recovered? I'd feel better, try to go back to life as usual and in less than 1/2 a day be back on my back again. And I'm still not 100%.

But luckily I remembered something. Sometimes when God, the Universe, your Higher Self, or your inner being needs you to pay attention to something you refuse to look at, something outside of yourself will happen to make sure you address what you need. Before I got sick I went through a period of workaholism. Look at how many entries this blog had in January to see what I mean. And this isn't the only blog or website I take care of. I have several. It didn't seem like too much to think I could write almost every day in every single one of them. Especially this one. After all, half or more of the entries have been excerpted from a book that's already written.

But that's what it's like with creeping workaholism. Each individual thing that gets taken on really IS no big deal. But add them all together. . .

Even professionals in the field can lose perspective. Turns out I had to be put down so I could take the time to look at my life objectively. To think, to dream, to notice what hasn't been working -- time to take those things off my plate! -- to notice where I take on too much because I've come to think no one else will. I even found out that if I let go of the reins my partner will do a better job than I do! He does it a different way, but so what? It turns out I deserved to let go a bit and be shown a better possibility for getting things done. Work less, accomplish more! That's his way. No harm in that.

Burn-out comes from doing way more than the average person would ever do if they were to come at the job fresh. The responsibilities keep getting piled on the plate, you don't notice, you just keep taking on more. And then you wake up and you're in over your head in boiling water wondering how you got there and how on earth you're going to get out.

Take a break. Please. On the seventh day even God rested.

Hello Again

2008-03-07T17:55:00.000-08:00

No, I didn't fall off the face of the earth. My whole household has had the flu -- for more than a month now! We'd get better and then get sick again. I'll tell you, it's been frustrating. I still have very little I want to say but new blogs will be coming soon.

You Say You Want a Revolution

2008-02-22T19:27:00.000-08:00

I saw a new movie called "Across the Universe" last night that features songs by the Beatles and is a good representation of life in the 60s, the time period when those songs were written. Quite the nostalgia trip. I wrote an article about being a child of the 60s and a caregiver today that is included in my book The Spiritual Journey of Family Caregiving. Here's a small excerpt:

It’s an interesting role we children of the 60’s now have—in our youth we fought to change the world by joining protest marches and refusing to conform. We envisioned new futures and built whole movements of change around those visions. We created communes and worker cooperatives and new businesses that challenged the status quo. We carried freedom of speech to new extremes, challenged social and political discrimination based on every sort of difference, and created a sexual revolution that has completely changed the mores of the world for better and worse. We believed in revolution and created one mostly by rejecting the habits (and the wisdom) of our parents’ generation. We made anyone over 30 the enemy but now we need to take care of this same generation. The only way we can do that is by putting the battle down and making peace as best we can.

Luckily, most of us do have appropriate experience we can draw upon. During the last 10-20 years, my generation has spent most of our time as parents and breadwinners ourselves and have, for the most part, learned to mellow our approach to social change. We learned the importance of creating emotional and physical stability for our children while assisting them to change and grow in a gentle organic manner. We strove to respect our children’s feelings and right to make decisions for themselves even as we attempted to steer them in positive directions and help them make healthy choices. And there have been times when we have had to set the very same limits our parents set for us and say no to behavior that was counterproductive for all concerned. Chaotic revolution and anarchy is not the best way to raise a family!

And it’s not the most loving way to treat adults. If we continue to fight the 60s fight about change with our parents we will have a very rough road as caregivers. But if we apply the same principles to caregiving that we learned as parents, we’ll be much more successful. We need to help our parents maintain emotional and physical stability while introducing change gradually. We need to respect their feelings and their right to make decisions for themselves. We can suggest what we think are more healthful solutions but we need to accept their right as adults to make choices we don’t agree with unless that behavior falls into the legal definition of self-neglect or hurts someone else.

None of this has anything to do with accepting any status quo that keeps us trapped in an unhealthy dynamic for years at a time. Insisting that their behavior not hurt anyone else includes us! But changing these dynamics does require patience and the willingness to face the feelings we—and they—have been avoiding. Acknowledge the grief and fear that change entails outloud. Agree that their feelings are justified and promise to support them through it. When the time comes that the pain of doing nothing is worth the risk of trying something new, if your emotional support has been genuine and consistent, you may get an opening that will let you all get what you need.

Buy The Spiritual Journey of Family Caregiving by clicking here now!

Basic Needs and Thinking Beyond

2008-02-21T11:44:00.000-08:00

In several earlier blogs I wrote about the Seven Psychospiritual Levels of Family Caregiving—survival, emotional safety, self-esteem and personal power, love, communication, perception, and spiritual focus. Later I admitted that these ideas were similar to the New Age version of the Hindu chakra system. They are also quite similar to Abraham Maslow's psychological hierarchy of needs.

Maslow believed, as most psychologists do, that throughout their lives people progress through various stages of growth and development with characteristic needs that become the person's focus of attention and underlying motivation. We also revisit or can become stuck at certain levels of development because of outside circumstances beyond our control and our reactions to them.

Maslow recognized that the first stages of development—physical safety, emotional security, and issues of self-esteem and personal power—were what he called "deficiency needs." If those needs are met the person tends to relax and automatically chooses to focus on higher needs and desires like truth, beauty, creativity and giving to others. But if they're not met, people get understandably anxious, they shift into emergency modes of behavior, and their perspective tends to narrow. They lose track of their higher purpose. And the decisions they tend to make are changed as a result.

I always assumed that the answer to moving up this scale of needs or up through the Hindu Chakra levels of development was to work through whatever needed to be addressed on whatever level that you're on. And that's true to the extent that those issues hold you down. And yet most of us in the United States anyway are not living in such abject poverty that our basic needs can't be met. Even if you were to somehow lose everything there are social services that provide shelter, food, counseling services and job training to get you back on your feet. If you're willing to accept help a person's basic "deficiency needs" in this society are pretty much guaranteed to be met. But an awful lot of the time we lose sight of that. We get scared. We think we're alone. We sink into believing our survival and well-being is threatened and act as if all is lost when it's not.

For example, I recently went through a period in my life where I felt worried about money. A few unexpected setbacks, the yearly after-Christmas slump in counseling and sales, an upsetting series of comments from my loved ones, and then a bout of sickness and an inability to work that lasted weeks. My desire to take a long-term view for this book, get it out to the widest number of people possible, use it for the greater good, temporarily took a back seat to "how am I going to make a living from this??!!!"

The same thing happened with my counseling practice and my flower-essence aromatherapy perfume business. All I could think about was how to change things as fast as possible, totally losing track of the longer view.

But then things started to settle down. Sales picked up slightly, I asked for help, and with that help new ideas for how to grow the business and the counseling practice started to come into sight.

The last couple of days I've had a repeating dream. I pay attention when that happens. It's always an indication of what I need to pay attention to next. The content of the dreams doesn't matter but the message that came through was to pay attention to the value of what I do, not just my personal problems but how what I have to offer can help other people, too.

When I was so busy doing, doing, doing whatever I thought would get my immediate deficiency needs met I couldn't think about my higher motivations. I was too busy putting out what I thought was a blazing inferno. But now my subconscious is saying "Don't do that. Think about what matters most, the VALUE of who you are and what you bring to others."

In other words, slow down, relax and reach higher up the chart of Maslow's hierarchy of needs to being of service, doing something of value, and giving back.

It occurs to me today that family caregivers could learn something from this. When I was a family caregiving consultant I saw people stuck in emergency mode all too often. Running here, running there, totally consumed with what HAD to be taken care of RIGHT AWAY! Sometimes that had to happen temporarily but many people got stuck in this panicky short-sighted point of view. They lived this way. And they were miserable.

People in these situations rarely talked to me about the value in who they were and what they were here to do. They never talked about love or higher purpose. They never noticed a single joy in the caregiving work they had taken on and they made short-sighted decisions that turned out badly and frequently had to be changed. I can relate to their pain and struggle all too well.

But I know better, too.

When I was a teenager I took a training in being a Junior Lifeguard. I hated it and didn't continue but I wish I hadn't given up because something significant from that training was lost to me. We were told to go limp if we were ever trapped underwater. To slow down to preserve our breath, remove any heavy pieces of clothing weighing us down, and then do what we had to do to get back to the surface again. I didn't practice it enough to learn it in my gut. When my friends and I capsized a boat a number of years later I panicked because my shoes were too heavy and my sweater was weighing me down, I forgot my training and fought with all my might until someone noticed the thrashing and rescued me.

No harm done. The thrashing about did help me get saved. Sometimes that's what you have to do. But you can't live your life that way! At some point you have to slow down, assume you have more time than you think you do, and get rid of any baggage weighting you down. If nothing is in the way, you kick a few times and pop up to the surface for air. If no help is in sight at that point then preserving your strength is essential. In lifeguard training the first thing you learn is to float. Learning to relax and preserve your strength so you can assess your situation and weather it as long as possible.

12-steppers say "let go, let God." Faith. Trust. The stuff at the top of the Hierarchy of Needs and Chakra system chart.

A perspective many of us lose sight of all too often.

Aging Newsletter

2008-02-15T22:48:00.000-08:00

Are you receiving the "Human Values in Aging" e-newsletter? This monthly publication sponsored by the AARP Office of Academic Affairs features items about positive aging, including spirituality, later life creativity, lifelong learning, and the humanities and arts. For a sample copy or free subscription, send a message to: valuesinaging@yahoo.com

Compassion for All Concerned

2008-02-14T16:26:00.000-08:00

The Webster dictionary defines compassion as “sympathetic consciousness of others’ distress together with a desire to alleviate it.” Compassion is at the heart of what we do as caregivers but it is also the area where we get most confused.

What happens when your patient has a disease that has no cure? What happens when grandma refuses your help and insists on sitting alone in her chair day after day despite your best efforts? Is it ever compassionate to say “No, I can’t do this for you. You’ll have to try to do it yourself.”? When is it compassionate to put family caregiving down altogether and hire a case manager or use a care facility for the bulk of the care?

Very often in my work as a caregiving consultant I find myself asking the same kinds of questions. How can I help this person who seems to refuse my every suggestion? What can I do for this person whose problems seem so big I can’t even imagine a solution? What do I do when a person is begging me to help them avoid the pain of the only thing I know will make their situation better (using psychotropic medications, facility care, or accepting their patient’s impending death). Most of the time all I can think of to do is to simply sit with them and help them cry.

The one thing I’m sure about is that compassion needs to apply to all people involved. If the caregiver is not compassionate with themselves they can’t make truly compassionate decisions for someone else.

Lately, I’ve had a rash of caregivers who are in much worse condition than the people they are caring for. In their desperation to keep their patient from experiencing the disappointments, frustrations, and unavoidable sorrow associated with living a life with disability and loss they have put themselves through far greater pain and suffering. Is this really compassion?

To avoid pain is to avoid life. Avoiding feeling one’s feelings leads to addiction to alcohol, drugs, sex, food and TV. It’s a form of suicide and, in the most extreme circumstances, can literally lead to one’s death. Yet, ironically, in our society we think it is a form of “compassion” to focus all our attention on helping ourselves and others avoid difficult feelings at any cost. Rather than grieve our losses, move through the pain, and make decisions from a place of what makes sense, we medicate ourselves into a “happy” place and do whatever we can to keep things the same.

When a caregiver sacrifices it all so a loved one can refuse to be helped by anyone but her, she has chosen to impoverish her own being. A person who was rational and truly coming from a place of love and compassion for others would never expect someone they love to destroy his/her life in order to help them avoid developing relationships with more people who could help. A person who was truly being compassionate to themselves would never allow someone to treat them like that. They would say, “I’m sorry, Dad, that’s not possible. These are the options we really have. I’m sorry you feel badly about that. What will make this easier for you?” THAT is what compassionate care really looks like.

It takes courage. It takes knowing what your limits and boundaries really are and facing the fears and grief related to not doing what others have come to expect you to do. It takes knowing what you need for your own well-being and having the ability to say, “This is no longer negotiable.”

In reality, allowing yourself and others to be disappointed IS the best choice for all concerned. It allows people to see things as they are. It helps people accurately evaluate what needs to be done without the superhuman (and unsustainable) efforts of Super-Caregiver getting in the way. Super-Caregiver is really only human. We all have physical and emotional limitations and when we go beyond those limits eventually there’s always hell to pay. When we surrender to what’s actually happening—not only to our care receiver but to ourselves—we will always make the best choices. And sometimes those choices involve facing great loss and pain.

Sometimes the only rational thing we can do is help each other cry. This is NOT how we wanted our lives to be! This is NOT the sweet end of life we always dreamed of for our relatives! This is NOT working out the way we thought it would! And when we finally let go of the struggle to make life be what it is not, and our grief and tears are finally vented, we look up and see the world through new eyes. The old unworkable solutions can now be discarded and new choices can be made. They’re not the choices we thought we’d be making. They’re not the choices our relatives and friends might think we should make. But, they’re the best choices we CAN make given the reality of where we are today. To bravely go where we never wanted to go before, with the intent of making this choice be the best we can make it be, is the most compassionate decision a person can make.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. Buy the book at Lulu.com.

Learning to Trust When You Really Don't Know

2008-02-08T08:43:00.000-08:00

I saw a photograph in a funny book I really like called The Meaning Of Life by Bradley Trevor Greive that showed a happy goldfish in a goldfish bowl with plants and pretty rocks. The quote under the photo says something like, “Why do we try so hard to create our own little worlds so we have the illusion of being completely in control of our entire existence... “ The next page shows a cat peering into the goldfish bowl and the caption continues... “when we know with absolute certainty that we are not?”

So many of my clients want me to predict the future and tell them exactly what to do so that they are prepared for every inevitability. Now, truthfully, I far prefer the clients who want to be prepared in advance to the ones who don’t because it really is easier to put certain safeguards in place before the time a crisis hits. However, we never really can know for sure what’s coming next. Sometimes we go to great lengths to make things work out well and something we never expected, and could never have anticipated, happens and we have to scrap our perfectly designed plan and start over. People who fear this happening can waver back and forth between multiple options, going round and round in circles and putting off the decision for years. There are SO many factors! And they think they have to make the RIGHT decision because how could they ever forgive themselves if it didn’t work out? And on and on.

Yet others go with great uncertainty into the great unknown and something wonderful happens!

I’ve come to depend on the value of both options: planning ahead for the most likely scenarios, knowing how I want to respond to my greatest fears, and then assuming that I DON’T REALLY KNOW how it will turn out. I take a deep breath and ask, “What’s the best thing that could happen if I take this option? Is it worth a chance? Have I covered my bases so I know what to do if I hate how it turns out? Yes? OK, here we go!”

Do I make mistakes and have to reverse direction? Absolutely! Just ask anyone who has ever driven in a car with me! Do I hate it when I do this? Yes! Have the consequences ever been painful? Many times. And yet the learning and growth I experienced from these wrong turns has led to better decisions in the future and sometimes entirely new directions I never would have found otherwise. Great things have happened as a result! So, even though none of us really want to make mistakes, sometimes that’s part of the process that has to happen. That’s what Thomas Edison thought. Here’s what he said about how many times he failed at trying to invent something before getting it right: “I have not failed. I’ve just found 10,000 ways that won’t work.”

Now I know that taking care of a loved one feels more wrought with anxiety than inventing a lightbulb and you certainly don’t want to make 10,000 wrong turns so call your family caregiving consultant or local social service center to help narrow down the choices. But, to tell you the truth, I very rarely hear about caregiver decisions that are a matter of life or death. Nine times out of ten, the worst that will happen if a wrong turn is made is a few weeks to a month of high emotion while the care receiver and the family get used to something new or have to reverse direction and try something else. It’s inconvenient and highly distressing but then things settle down and a new order to life appears. It’s often worth the pain and distress and, even when it isn’t, people rarely regret having taken a chance to try to do what they felt was right. At least, they’ll never have the regret of never trying to care for their loved one at home. At least, they’ll never regret that they didn’t use in-home or nursing home care when they needed it most. At least, they’ll never have to regret that they didn’t even try to do the thing in their heart of hearts they most wanted to do.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. Buy the book now by clicking here.

Bulk Discounts!

2008-02-03T19:58:00.001-08:00

I've received some questions about whether I would offer a bulk discount to people who want to buy several copies for their support group, caregiving organization or to sell as a fundraiser for a particular cause. The answer is yes! I can offer a 15% discount for orders of at least 5 copies to a single address, 25% off for at least 15 to a single address. But don't click on the link at right to buy the book through Lulu. You'll need to buy the book directly from me and I'll order them using my author discount and have them send the books to you. Contact me by clicking this link.

Default Caregiving One More Time

2008-02-02T19:51:00.000-08:00

"I thought I would benefit by doing family caregiving but it didn’t work out that way and now I’m stuck!"

Many people get a free place to live by taking care of an ailing parent or other relative. It looks like an easy way to take a break from ongoing financial struggles and it provides a service to someone else at the same time. Everyone wins! Or so it seems, at first. But when dementia is involved—and often when it isn’t—the dependency that care receivers tend to develop for their primary caregivers gradually takes its toll.

The caregiver gladly does what appears to be needed. It’s wonderful to know you are needed and to know exactly what needs to be done and just do it. Far easier, at first, than tackling the issues in one’s own life! But then, slowly but surely, the care receiver starts to need more help. Whether this situation is caused by continued physical and mental deterioration or by unconscious emotional dynamics between the care receiver and caregiver doesn’t matter. Eventually, unless this process is anticipated and avoided from the beginning, the caregiver’s ability to focus on her own life can become consumed by the care receiver’s ever increasing need for care.

A caregiver in this situation usually feels like she doesn’t have the energy to deal with her own life and be a caregiver at the same time. But by putting off addressing her own problems she’s undermining her self-confidence and increasing her anxiety and feelings of dependency. When I talk about giving up being the primary caregiver a person in this situation always balks because they believe they need to continue caregiving in order to have their own needs for housing, etc. met (as well as to ensure that the care receiver continues to get the level of care they appear to be depending on). The caregiver needs to make a change because this situation is intolerable but they’re too afraid to relinquish the role. She isn’t necessarily stuck in this situation—the family would just make new choices if she bowed out—but she is too afraid to do that.

A caregiver in this situation needs to consciously choose to separate her financial concerns from caregiving responsibilities by scheduling time specifically for getting help for this issue. Depending on what the situation is, a financial planner, credit card counselor, career counselor or professional coach would be worth their weight in gold. You might need to go back to school, sign up for a job training program or get a paid part-time job.

Once you look into this, you may need to make alternate arrangements for taking care of your family member so you can follow through. But, more likely, you might decide that being there for your mom is actually the most important thing you could be doing—as long as you can relieve your anxiety about the future by having a plan that will help you pick up the pieces of your life after your caregiving responsibilities are over. If so, that’s the conversation to start having with your friends and family: thinking ahead to the time when the care receiver will no longer be living, or when they will no longer be living at home, and getting help to set a plan in place to tide you over that transition (temporary housing, assistance with basic needs, schooling or counseling) so you can feel better about your caregiving role, knowing that your future is being cared for as well.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. Click here to buy it now.

Default Caregiving Continued Again

2008-02-01T17:46:00.001-08:00

When a person feels trapped in their caregiving role there's usually a family pattern coupled with a set of practiced belief systems in place. In this excerpt from The Spiritual Journey of Family Caregiving I take a look at a very common scenario: the primary caregiver has brothers and sisters who leave all the work to her:

“My family ought to be doing more! I’m only doing so much because they’re not!”

Consider these possibilities instead:

My brother and sister do less because I’m doing more. You can test this by choosing NOT to be so available. Call a family meeting to determine how mom will be cared for when you’re not there.

My brother and sister do not understand the level of care required. An independent assessment from a doctor, social service agency or care management agency might be helpful to get everyone on the same page.

My brother and sister do not agree with me about how best to provide the care mom needs. “They would put her in a facility and I won’t let that happen! They would leave her alone more often and I won’t do that! They would...and I won’t....” Under these circumstances you may need to accept that you have different beliefs about what’s needed and that you choose to act on your beliefs despite your family’s lack of agreement.

Unless something happens to change their belief systems, you cannot expect them to cheerfully shoulder more responsibility. As I said earlier, you cannot force someone to caregive against their will, at least not without major repercussions. So accept any help they choose to do as a gift. And do what you can to gently and respectfully provide information about your mother’s condition. But know, that if nothing changes, you might need to make a different choice about how YOU approach caregiving. That doesn’t mean that you would be wrong and they would be right. It means accepting things as they are—funky family dynamics and all—and being prepared to make different choices as time goes on because of it.

The Spiritual Journey of Family Caregiving is available online. Click this link to buy it now.

Podcast Interview with Carol Marak

2008-01-28T12:29:00.000-08:00

Carol Marak is a woman who knows about the difficulties of balancing work and family caregiving firsthand. She took care of both her parents until their deaths and decided to create a website (WorkingCaregiver.com) designed to help other family caregivers in Austin, Dallas, Houston, and San Antonio Texas find the resources and help they need.

I had the pleasure of talking with Carol recently. She interviewed me for her Elder Care Expert Podcast Show and it went very well. You can read her blog and find the link to that interview here.

Default Caregiving Continued

2008-01-27T14:38:00.000-08:00

An excerpt from The Spiritual Journey of Family Caregiving:

“I don’t have anything going on in my life compared to everyone else in my family, so I’m the one who has to be the caregiver.”

If this was a healthy motivation for caregiving I wouldn’t have a job! And I certainly wouldn’t be hearing so much resentment. Usually, what happens here is that the caregiver who believes this statement wakes up one day and realizes that her caregiving responsibilities keep her trapped in a life of pain and anguish. At a time in her life (her divorce, for example) when she most needed to be taking stock of her needs, her desires, and her ability to create a new life she put her life down and took on caring for someone else’s. Her brother and sister are busy living the lives they wanted while she’s losing precious time doing something that’s really not healthy for her over the long haul.

The best thing a caregiver in this situation can do is to choose a time when she will take a break from her caregiving responsibilities to get help figuring out what she most wants for herself. She needs to make plans well in advance (by choosing a class, finding a therapist or career counselor, etc.) and then let the family know that she won’t be available at that time. This is different than saying “I need help” and then having to deal with her siblings’ resistance to giving away their precious time to someone who’s not as busy as they are. By saying “I’m not available” she is making two statements: “I’m doing something important, too” and “Mom needs help I can’t provide at a particular time. What can we do?” If no one is available a new choice about how to handle mom’s care (paid help, church volunteers, elder day care or social programs, or community service support) could be arranged.

The Default Caregiver—Do you Really Have To Be?

2008-01-23T18:33:00.000-08:00

Many books on family caregiving talk about the challenges of family caregiving from the standpoint of how to manage the daily tasks of the job and how to gather the resources you need. My book does that, too, but one of the things that became clear to me early on was that not everybody's motives for doing family caregiving were the same. It's not always a labor of love; for some people it's a trap they fell into, an obligation, a task they resent and struggle to survive. In the next several weeks I'll be putting up blogs about the situation of caregiving by default and how to change this worst case scenario into one that actually works.

From my book:

One of the saddest and most frustrating situations I come across in my work as a Family Caregiving Consultant is when a client says she didn’t “choose” to be a caregiver, she’s a caregiver by default. The story usually goes something like “My brother says his career keeps him too busy. My sister says she’s too busy with her three kids. I just got divorced and I don’t have kids or a career I care about. Mom insists on living at home and refuses to let a ‘stranger” into the house despite how much help she needs, so the job of taking care of her fell to me.” If I press I might hear that she cares about her mom and would feel guilty to say no in this situation... but the truth is that this caregiver doesn’t believe she had any choice but to say “yes.”

The anger and resentment this caregiver feels is palpable. She can’t talk about her brother and sister without spitting out the words. Later I find out that her relationship with her family is miserable because she keeps trying to guilt-trip them into doing things they don’t choose to be doing. Family dynamics are a disaster and she wants someone (me) to come in with my magic wand and fix it... but I can’t.

The caregiver, however, IS capable of making a change. Nobody can force a person to be a caregiver against their will. Our beliefs shape our experience and we always have the ability to change our experience by examining those beliefs and the choices that stem from them. Let’s examine the ones that might be running the show in the scenario above.

The previous blog is partially excerpted from my book The Spiritual Journey of Family Caregiving. Available now from Lulu.com.

Paradoxes of Life with Alzheimer's

2008-01-21T21:41:00.000-08:00

Sometimes families I worked with would tell me that the person they knew, the person they once loved or, in some cases, felt like they "owed allegiance to" no longer existed. They saw their loved one as an empty shell and said that it helped them make all the disappointing choices they needed to make at the end. Their loved one no longer knew them, knew where they were, or even recognized themselves in the mirror.

And yet, while I hated to disabuse them of what they believed to be a "truth," if they asked me I had to tell them what at least three caregivers in five years told me. The story was eerily similar for all of them. Their loved ones had not recognized anyone for years and one didn't even speak. But on their death beds, they suddenly had a moment of incredible lucidity. They looked straight into their primary caregiver's eyes, called them by name, and thanked them for everything. It gives me goose bumps every time I think about it.

Alzheimer's appears to strip away a person's identity but my belief is that it simply strips away the outer trappings—the personas, the socializations, even the beliefs about who one is. And yet the inner essence of the human being still exists. It can awaken spontaneously when one doesn't expect it, be accessed through a smile, familiar song, the right kind of touch. And sometimes when the old masks come down, aspects of the person's being become even more clear.

An excerpt from my book:

Lisa describes her mother with great warmth and affection. Family photographs show Verna to be a vivacious beauty with a twinkle in her eye, always dramatic in appearance because of her inflection and expressive body movements. In her final years she liked to wear wonderful hats that showed off her deep blue eyes and thick white hair. Lisa says her mother loved “beauty, mischief and adventure.”

Verna Mae was born in Ridgway, Pennsylvania in 1912. She was an accomplished pianist but grew up in the shadow of her sister, a well-respected conductor. Verna never played in public until Alzheimer’s Disease robbed her of her inhibitions but, from that point on, she played piano constantly and loved to dance. She was a great favorite wherever she went, always ready to grab an arm and twirl around the dance floor. People described her as the “eternal 16-year old”, always sprightly and girlish. It was a paradox of Verna’s dementia that she needed to lose her mental faculties in order to express her most authentic self. As Lisa describes it, her mother’s essence remained intact to the very end and, in fact, became more pronounced. She couldn’t recognize anyone except for Lisa at her death but never lost her appreciation of love and beauty.

The Chakra System

2008-01-20T11:20:00.000-08:00

If you're a practitioner of Kundalini Yoga, an avid meditator or have a strong interest in metaphysics or New Age philosophy you might have noticed that the seven psychospiritual levels of family caregiving I've posted blogs about recently bear a strong resemblance to the seven levels of spiritual development in the Hindu chakra system. I'm not a proponent of this system of belief. I grew up Jewish, lived in an Irish Catholic community on the East Coast as a child, later studied Buddhist and Taoist philosophy, and choose a very personal and somewhat eclectic form of spirituality today. However, what I learned about the chakra system was extremely beneficial at the time I wrote the previous articles and still influences some of the work I currently do.

The Chakra system is a very ancient philosophy which correlates certain parts of the body (which incidentally appear to correspond to bundles of nerve ganglia along the spine) with different sets of physical, emotional and spiritual life issues or phases of development. In Hindu culture it is thought that a person must pass through each of these phases of development on the path to enlightenment.

I first learned about the chakra system when I was a book designer and acting art director at Crossing Press. Crossing published many books on alternative healing and spirituality and we were given a copy of any book we worked on. I loved their titles and I read all the ones I designed and many more. One of my favorites was a book called The Sevenfold Journey: Reclaiming Mind, Body & Spirit Through the Chakras by Anodea Judith and Selene Vega. They teach workshops internationally to psychotherapists wishing to use the insights from the chakra system with their clients and in their own lives and this book was required reading in their classes. It's still in print, very accessibly written, and has lots of great exercises and down to earth examples of how to apply these insights to your everyday life. I loved it and I recommend it highly to all of you.

The Sevenfold Journey may not be specifically about family caregiving but one thing I discovered in my work is that family caregiving can serve as a catalyst for whatever phase of spiritual development you happen to be working on. For example, if you need healing in regards to your relationship with survival and physical life (finances, housing, etc.) you'll be forced to face those issues first in your work as a family caregiver. That's the work of Chakra 1. If your finances are mostly squared away, you have plenty of savings, a roof over your head and plenty to eat but you struggle with issues of personal power and self-esteem, that's Chakra 3. And so on.

Furthermore, it doesn't matter what religion or spiritual background you happen to be from. You can think of the chakras as levels of psychological development (which they are) and use the lessons in that context as well. I use this approach in my work as a spiritual counselor and throughout my own book. However, in The Spiritual Journey of Family Caregiving, I never even mention the word "chakra'. It's unimportant. Still, since I do use the word "spiritual," I thought it might be helpful for you to know the influences that led me to see spiritual significance in all the things we do. And to know what spiritual background I'm seeing the world from.

You can buy The Sevenfold Journey: Reclaiming Mind, Body & Spirit Through the Chakras by clicking this link.

You can buy The Spiritual Journey of Family Caregiving by clicking here.

Four More Psychospiritual Levels of Family Caregiving

2008-01-18T13:52:00.000-08:00

Level Four: Love

When our physical and emotional safety is assured and we have the willpower we need to make a plan of action and follow through, the most natural result is a desire to make loving decisions. Unfortunately, caregivers can be so concerned about doing what is loving for their relative that they forget to do what’s most loving for themselves. Caregivers who struggle on this level appear to willingly throw their lives away in order to provide the level of care they believe is right. They might do the self-care needed to stay physically healthy but never make time for their deepest heart’s desires. Eventually, however, this can lead to severe depression and illness can become the result.

These caregivers need acknowledgement of how loving they are and support to continue acting from a place of love. But, spiritually, they need to hear that refilling their own cups so they can give freely of their reserve is ultimately the most loving act for all.

Level Five: Communication

Love doesn’t do much good if you can’t communicate it. Caregivers struggling on this level complain that nobody really listens to them when they say what they need or report horrible family conflicts stemming from miscommunication or lack of communication on their parts.

I coach a lot of caregivers to communicate in ways other people can hear. I also encourage people to spend time listening to their inner voices so they can be clear about what they are asking for. Spending time each day in solitude, in prayer or meditation or by using art therapy, journal writing and other forms of creative expression can work wonders. Other people benefit from conflict resolution workshops or support groups where they are encouraged to express their feelings and ask for what they need.

Level Six: Perception & Imagination

I’m always surprised by how often caregivers allow themselves to be straight-jacketed by nothing more than illusion. A person living in the lap of luxury, making more money than I’ve ever even imagined for myself, will tell me he can’t afford to pay for services while a person in a run-down trailer park living on a tiny fixed income gives me a big donation check. There are caregivers who tell me that their severely demented relative couldn’t possibly be so badly off because “look at how good he looks” and others, dealing with only the mildest of memory loss, who insist their relative should no longer have their independence.

How a person perceives him or herself can also get in the way of healthy caregiving. Whenever caregivers see themselves as inadequate in some way their stress level and depression scores go way up. If they see themselves as prisoners every caregiving task becomes a hated symbol of oppression; if they see themselves as playing the role of guardian angel every caregiving task becomes a source of pride. Sometimes the biggest task is to help people see things from a different perspective.

Level Seven: Spiritual Belief & Purpose

Because caregiving stirs up so many moral issues, caregivers often talk to me about the role spirituality plays in their lives. Studies have shown that spiritual people have significantly lower levels of stress and my experience as a family consultant bears this out. Some people tell me their lives are blessed to be able to share so much love and to be of service to the people in their lives. They tell me times are hard but God never gives them more than they can handle. When I give these caregivers a standard depression scale test their scores are often the lowest of anyone I meet despite caregiving situations that rival clients with the highest scores. I am always humbled by how even the frailest elderly caregivers can be so strong and determined when buoyed by spiritual devotion. It is hard to ignore the value of such empowering beliefs.

Essentially, this level is about life purpose. Caregivers who operate from a sense of purpose have a clarity about their actions that is almost startling. They know that caregiving gives them an opportunity to fulfill that purpose and use my services to gather the resources they need to accomplish their chosen task. Others believe their deepest purpose lies elsewhere and choose to do what they can do as caregivers while maintaining adequate time and energy for their true callings. All caregivers who operate from a place of commitment to their highest goals tend to make choices that are empowering, clear and decisive.

Full Circle

It’s wonderful to be full of inspiration and higher purpose but if that purpose stays in your head and is never realized in physical reality it doesn’t do much good. We have to use all the abilities we develop along the way. We envision where we want that higher purpose to take us (Level Six) and communicate our hopes and dreams to others as we make our decisions and plans (Level Five). We gather community to support our heart’s desire (Level Four) and use our willpower to follow through on our intentions (Level Three). We find healthy ways to enjoy the process of getting to our intended destination (Level Two) and use all the physical resources at our disposal to bring our ideas to fruition (Level One).

That brings us full circle and makes it clear, I hope, that one level is not more important than the others. They all work together. They all are paths for personal growth and development, and caregiving, within this framework, is the perfect catalyst for this to happen.

This blog is an excerpt from The Spiritual Journey of Family Caregiving, available now through Lulu.com.

The First Three Psychospiritual Levels of Family Caregiving

2008-01-16T10:50:00.000-08:00

In a previous blog I mentioned that it seemed like the issues caregivers came to see me about fell into seven distinct categories of distress. This blog describes the first three; I'll post descriptions of the other 4 levels later this week:

Level One: Physical Survival

This is our foundation, what we need to survive. The problems caregivers have on this level always seem to revolve around money, adequate housing and physical health. They might have addictions stemming from their desire to escape their lives or act as if they are incapable of taking care of themselves on the physical level. Some people even become dependent on doing caregiving because they use the patient to supply them with housing and other basic needs.

My task with these caregivers is to help them find the resources they need to learn stand on their own two feet. I might suggest a family meeting to help the family divide caregiving responsibilities in a way that allows the primary caregiver to go back to school, get a part-time or full-time job or develop a plan that will help them separate their caregiving decisions from issues of personal survival. This is essential to create a foundation of support for both the caregiver and the person who depends on their assistance.

Level Two: Emotional Safety

The biggest problem for these caregivers is trouble with emotional boundaries. They might find themselves blown off-course by their patient’s emotional reactions and spend all their time jumping through hoops to keep the peace instead of making space for their own needs or desires. Or, conversely, they might put up such high barriers to protect themselves that they become isolated, untrusting, judgmental or depressed. They fear someone will try to take advantage of them in some way and turn away help that other caregivers jump at the chance to get.

My task with these caregivers is to help them create emotional safety either through learning to set appropriate limits or by learning to take small emotional risks. Both of these caregivers benefit by joining support groups where they get the nurturing needed to develop trusting relationships and the support to take care of themselves. For others I might recommend a self-help book, sessions with a therapist or a class. I also like to help people remember that emotional safety stems from enjoyment of life and encourage them to plan pleasurable activities every day.

Level Three: Self-Esteem & Personal Power

Caregivers struggling on this level may have every advantage in terms of money, respite assistance and family involvement but fret over every decision for fear of making a mistake. They repeatedly say that they need to make a change but do nothing because they fear it won’t work. They believe they are powerless to change the status quo.

Other caregivers go to the opposite extreme. They attack every challenge as if on a battlefield and overcompensate for their fears by compulsively staying in action. They find it hard to tell the difference between emergencies that require such superhuman effort and situations where slow relaxed progress would do the same. They antagonize people who might otherwise help and exhaust themselves through overwork and repeated stress.

My task as a family consultant on this level is to help people use their power in a balanced fashion with realistic action plans. We focus on baby steps and the reassurance that it is okay for things to be less than optimal even for long periods of time. I try to help people trust that slow steady progress that allows for adequate rest, time and attention for other aspects of one’s life can be more effective in the long-run than burning oneself out with frantic attempts to fix everything that’s not quite right.

This blog was an excerpt from my book The Spiritual Journey of Family Caregiving. Now available through Lulu.com.

I Got My First Book!

2008-01-14T12:08:00.001-08:00

I bet you thought I already had seen my book. Nope. I was just so excited that the book was now available that I got working on how to let people know about it right away. The rest of us call it "jumping the gun" but the book industry calls it "preselling". It's the same thing movie producers do when they put a trailer for a movie they aren't even finished with yet out in movie theaters months ahead. They get you all excited about a new movie only to put a line at the end of the preview that says "Coming in March."

I was actually a little worried about "jumping the gun" but I got my first copy of the book in the mail this weekend and I had nothing to worry about. It looks great! I'll be adding a page of endorsements of my work to the front (I forgot that) and I'm making some insignificant adjustments nobody but a perfectionistic old graphic designer would EVER even notice. (I used to make my living that way.) Then I can hit the "okay" button and make my book available to Amazon.com and other online distribution services. It's already available to all of you though, buying it directly from the printer, the same way I did, through my association with Lulu.com.

I'm so glad it came out good. I didn't know if a print-on-demand service would be good enough but it looks every bit as professional as books printed any other way. I used to work as the acting art director for a book publisher (Crossing Press) so I know. Now it's off to get some other things done. I'll put more up later this week.

You can buy The Spiritual Journey of Family Caregiving either as a print-on-demand book or as an e-book download by clicking here now.

The Seven Psychospiritual Dimensions of Family Caregiving

2008-01-14T11:51:00.000-08:00

The following is an excerpt from The Spiritual Journey of Family Caregiving:

Last week I had three phone calls from caregivers in almost identical situations. They were all adult children in their 50s who had moved a demented parent into their home to better manage their care. The patients had similar problems and the caregivers were in the same income bracket and had similar levels of support. However, the cases couldn’t be more different. One person was in crisis mode, and desperately spent her time putting out fires the other caregivers did not even detect. Another was outwardly calm and was clear-headedly collecting resources so she could be the most loving caregiver she could while keeping her life intact. The third was deeply depressed. She wound up caregiving because everyone else in her family expected her to do it.

Family caregiving isn’t a simple process of determining what a patient needs and providing it. Long standing personal issues come to the surface and make the process much more complicated. Over the years I’ve noticed distinct categories of difficulty which I now think of as separate but related realms of personal development. The levels are:

1. Physical Survival
2. Emotional Safety
3. Self-esteem & Personal Power
4. Love
5. Communication
6. Perception & Imagination
7. Spiritual Belief & Purpose

A caregiver lost in basic survival never talks to me about love or issues of spiritual morality whereas those who have their physical needs well in hand often do. On the other hand, there are caregivers who only speak to me about love and spiritual purpose while their physical health suffers and their finances are in a shambles. I’ve come to believe that physical, emotional, and spiritual health depend on maintaining balance in all these areas of life.

In my next few blog entries I’ll be exploring caregiving through the lens of each of these seven dimensions.

Caregiver Blessings

2008-01-11T09:45:00.000-08:00

As I'm sitting here trying to decide what excerpt from my book to add next -- or what article to write -- I find myself wanting to avoid diving into the hard stuff first. There's a lot of hard stuff but there's one thing I learned the "hard" way in my career as a family consultant -- don't let yourself become blinded to the beauty of life through the pain and despair of the enormity of the situation you find yourself in. It's bad enough to be watching someone you love deteriorate step by step but to lose sight of the loving, the small things that make it all worthwhile, the positive remembrances of good times in the past.... well, then you lose everything.

I just took some time to scour my book looking for quotes from caregivers I worked with about positive things they remember about having been caregivers or what they learned. Here are a few that I found:

The time I spent caring for my mother was the most difficult in my life and also the most precious. It is hard to see the wonderful moments when one is immersed in the tragedy. In looking back, however, I seem to remember mostly those times and the misery and tragedy is gradually fading.—C. Pezzoni

You find out what you are made of. When I look back on the sacrifices I made, the amazing ways I found to cope, the people who helped me, I find a sense of wonder, and pride that I did it. I didn’t know what I was capable of. I kept my commitment to my mom to be there for her when she needed me most. She helped me into this life. I helped her out of it. We both know it, and nothing can take that away. —R. Ryan

What I have really learned is about my own depth and capacity to love. I’ve become more sensitive to my own mortality and to what matters in the end. Truly loving someone, being aware of beauty and keeping the senses alive helps you appreciate each breath. Some people get that from studying Zen or reading books, I learned it from taking care of my mother.—L. Ledin

Excerpts from The Spiritual Journey of Family Caregiving. Available now in print or e-book download from Lulu.com.

My Book Is Going to Be Reviewed!

2008-01-10T14:43:00.000-08:00

Well, that is what any book author wants, assuming the book review is good. But that's the exciting AND scary thing about it. The opportunity to have a book reviewed in the national press can make -- or break -- an author's reputation. Ann, in her comment to my "Embrace the Present, Embrace Possibility" blog, said it best when she said "Change can be good or bad." And we can't control that and frequently we have no idea in advance what the true impact of the change will be. Sometimes it's both good and bad at the same time.

For example, I lived through a devastating earthquake in Santa Cruz, CA in 1989. My house was rocked partially off its foundation, my now ex-husband's business literally slid down a hill and never recovered, the framed pictures I was busy getting ready for a show fell and smashed to bits. Our downtown area was mostly rubble and took years to recover (one or two holes still haven't been filled in). But to say the change this created was "bad" would be both an understatement AND a mistatement at the same time.

Today, nineteen years later, I can truthfully say that in many ways the downtown has never been better. It's robust and thriving in a way that wasn't possible before. My own life was forced into directions I NEVER would have even contemplated and one thing led to the next and I'm doing things much more valuable and interesting than what I could do before.

So now I've embarked on the journey of being a book author again -- this is my third time -- and I only just got started publicizing it this week and the response from the very small effort I've made thus far has been immediate. I don't know about book sales yet but people have written to me and are checking out this blog, asking to review it for their publications.... all right then. Let's see what happens next.

Dementia Caregiving News Feed Added

2008-01-09T11:18:00.001-08:00

I just added a newsfeed on this blog with up-to-date information from news sources around the world about dementia and dementia caregiving. It's way at the bottom of the page and includes the text of one news story and links to several others. Check it out!

Embrace the Present, Embrace Possibility

2008-01-09T01:09:00.000-08:00

Worrying about the future is something I am way too much of an expert at. Aren’t we all these days? Life has been so full of turmoil with terrible news about war and terrorism and children being kidnapped and other horror stories on the nightly news, not to mention worries about budget cuts and the normal personal dramas of everyday life.

I got some advice on this the other day: Embrace uncertainty. (Personally, this advice sounds impossible to me but there’s a logic in it worth exploring.) Everything in life is uncertain. Security, as Helen Keller liked to say, is an illusion. We could be hit by a bus in freak accident tomorrow. We can plan our lives down to the nth degree and lose it all in an earthquake. We just don’t have that much control! And yet so many of us, myself included, spend hours every day trying to plan and control what happens next.

There’s a flower called Mimulus that likes to live in precarious places overhanging running water. Other flowers choose protected areas surrounded by grass and trees or prefer to be in wide open grassy fields but not Mimulus. It lives life on the edge and when it’s time to reproduce it just casts its seeds into the water below where they are carried down the stream and planted wherever they end up. Can you imagine what it would be like to trust life so much? To just let go and believe you’ll wind up where you need to be?

Anxiety comes from fear about the future. We want the future to be a certain way and then fear that it won’t be. We try to convince ourselves that we can make things work out the way we intend and spend hours trying to imagine and prepare for any possibility that would interfere with our idea of how things “have” to go. And yet underneath we KNOW we can’t control every variable so, because we get so invested in how we want things to be, we get anxious and afraid.

I think the best way to be prepared for the future is to understand that even the worst case scenario can open doors for the best. We have to embrace everything that happens in the present as an opportunity.

This blog entry was excerpted from The Spiritual Journey of Family Caregiving. Available now from Lulu.com.

Home Is Where The Heart Is -- What to Do When a Dementia Patient Keeps Asking to Go Home

2008-01-07T21:28:00.000-08:00

“...Every day’s an endless stream
Of cigarettes and magazines
And each town looks the same to me
The movies and the factories
And every stranger’s face I see
Reminds me that I long to be

Homeward Bound
I wish I was
Homeward Bound
Home, where my thought’s escaping
Home, where my music’s playing
Home, where my love lies waiting
Silently for me ....”
—“Homeward Bound”, by Simon & Garfunkel, 1966

On a recent trip back east I had a megadose of “home.” People always ask how California is different from New England and I talk about old houses and white church steeples, green green grass in the hottest summer, autumn leaves, and rolling hills. I talk about the way people talk and what they talk about, how they dress and how they act. It’s a completely different culture in all kinds of subtle and not so subtle ways but what really makes New England home for me is harder to explain.

It’s a feeling of place, the absolutely solid conviction that this is a place that supports me, where I feel safe, where I can relax. I see those white colonial houses with their black shutters sitting peacefully around the town green with the white-steepled First Congregational Church at the corner (those classic New England churches are always “First Congregational”, don’t ask me why) and even though I’m Jewish and I’ve never stepped inside one of those structures in my life I feel right at home.

It’s the touch of familiar. I know this. I know how to act here. I know what’s expected of me. And I know what to expect. When my parents took me to a play and insisted that we arrive a FULL HOUR EARLY even though it was reserved seating and we had our tickets already I was surprised to see the parking lot filled with other people waiting in their cars for the doors to open. However, when the performance scheduled for 8 o’clock started exactly on the dot of eight I breathed a sigh of relief. I haven’t been to an event that started on time in 16 years, the entire time I’ve lived in Santa Cruz. It’s those little things that really don’t matter that give you the reassurance that all is well. It’s as it should be. I know this. I’m safe here.

Dementing illnesses strip this safety away. Little by little and sometimes in large chunks the familiar becomes unfamiliar. The little things a person unconsciously counts on to clue them in to where they are, who they are, how they should act and what they should expect disappears. The family starts to hear “I want to go home” over and over. What this really means is “I don’t feel safe anymore.” “Nothing is familiar.” “I want to go where I don’t have to worry, where I can rest, relax, breathe deeply and know everything is alright.”

Unfortunately, when you are losing your mind everything is NOT alright no matter what anyone says to convince you otherwise.

Families resort to all kinds of tricks to deal with this and sometimes that works. Sometimes going for a drive around the block and going through the familiar action of walking up to and opening the front door to one’s house is enough to trigger the feeling of “at homeness” for a confused patient. An old favorite dessert or a piece of music can do the same thing.
But when all else fails—the usual tricks, the false reassurance, the distractions—it’s time to get honest. Things aren’t the same anymore. Neither one of you is in familiar territory anymore and it does feel terrible.

But home isn’t just where things feel familiar. “Home is where the heart is.” “Home is where they have to take you in.” “Home is where everyone knows your name.” Home is where you know you are loved. So bank on that instead.

First acknowledge the pain and confusion outloud. “You’re right. Everything has changed and there’s nothing we can do about it. I’m so sorry. I wish I could make it different but I can’t.”

Then remind the patient (and yourself) that you still have love, the ability to show you care and the ability to receive it. Even the most demented patient is capable of holding your hand and vice versa. So hold hands together, be together, claim a moment of comfort together. The only thing any of us really have is the present moment because nobody knows what the future will bring and the past is over. So be in the present together. Remind your patient that they are safe, you love them and care about them. Say “We can’t go back now. I wish we could! I want to go home, too! But it’s too late now. We’ll just have to stay here for the night. But at least we’re together. Working together there’s nothing that we can’t handle. Can you help me with that? Let’s have some ice cream together and watch TV. We can cuddle up on the couch, look at old photo albums and reminisce about old times, maybe put on some music and dance.” Tell your patient “I’m sure in the morning it will feel a lot better.”

And it will.

This blog entry is a chapter from the Spiritual Journey of Family Caregiving.

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