Let People Know How To Manage Your Care If Unable To Speak for Yourself!

If something should happen to you and you are unable to speak for yourself does your family know your wishes as to how to manage your care? And will they have the legal right to act on your behalf? Are you thinking about whether you may be called on to do that for someone else? You can do something about that. Fill out Health Care Proxies, print them out, and make sure everyone who might need to be involved has their own copies. http://www.doyourproxy.org/webtool.php

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

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!

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.

"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.

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.

Being Still, Letting Go

Painting © Copyright 2009 Sheryl Karas

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.

Codependent No More

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!

Codependency as a Precurser to Dementia

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.

Get the Facts on Healthcare Reform

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!

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

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.

24 Hour Caregiving

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.

Loneliness May Be Hazardous To Your Health

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.

How Do You Perceive Your Caregiving Role?

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

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

"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

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

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.

Another Book Review

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.

The Connections Between Patient and Caregiver Mental Health

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.