Home for the Holidays -- Omigod!

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

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.

Related articles

• Hope for Treating Alzheimer's Progression (psychcentral.com)
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• Researchers Trace Alzheimer Process, Hope To Find Effective Treatment (consumeraffairs.com)

Gifts for Alzheimers Disease Caregivers and Families

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

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

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

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From MoveOn.org

 

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

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

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

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

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.