So Pfizer Won't Be Funding Alzheimer's Drug Research Anymore? So What!

A column by Michael Hiltzik of the LA Times says that Pfizer Pharmaceuticals is using money they're getting from the Trump-Republican Tax Cut to pay off their shareholders and end their involvement in Alzheimer's drug research. About 300 researchers will lose their jobs as the money is shunted to other projects. Hiltzik was criticizing them for this decision and I normally would agree with him!

But I used to work for the Alzheimer's Association and for a caregiver resource center supporting family members taking care of people with this disease and other dementia-causing illnesses. And, while I know all those wonderful people I used to support who are desperately praying for a drug-cure for this disease might be feeling horrifically devastated by this news right now, I think the end of this relationship might be worth celebrating!

Maybe now the REAL causes and cures for Alzheimer's Disease can be the focus of the Alzheimer's Association instead of looking for a drug cure. Yes, I said it, the REAL causes. My opinion, backed by a LOT of recent research, is that -- except for the genetic version of Alzheimer's which represents a very small % of those who get the disease -- the cause of Alzheimer's Disease and a lot of other types of dementia is almost definitely way too much sugar consumption (eventually crowding out any real nutrition), loneliness and depression. You can add in lack of exercise for those who actually have vascular dementia (you can't get a definitive diagnosis of Alzheimer's Disease without an autopsy). And we have known about some of these factors for at least a decade!

We need a societal cure, not a drug cure. And I believe that is one of the reasons Pfizer is withdrawing their research dollars. If the research continues to support the idea that diet and depression are the biggest factors, there's no point in Pfizer continuing their drug-cure based investment. They already make symptom-covering drugs! All the literature, videos and slide shows that Pfizer used to give to the Alzheimer's Association came with "info" about Aricept or whatever other drug they were promoting at the time. In return, the Alzheimer's Association put almost all their efforts into raising money for drug cure research. 

As far as I'm concerned, it's just fine for this symbiotic relationship to end. Have them put the money where it counts.

Why We Need to Change Our Approach to Alzheimer’s Disease and How

Do you know somebody who has Alzheimer’s Disease or some other type of age-related memory loss or confusion, inability to take care of themselves? This is known as dementia and, according to the Alzheimer’s Association, more than 5 million people in the United States suffer from it today.

I used to work for the Alzheimer’s Association and I know they spend a lot of time fundraising for a cure for this disease and a lot of the money goes into pharmaceutical research, which is a good thing because anyone who is dealing with this disease desperately wants and deserves a worthwhile treatment and cure! But my job (and the job I had later at Del Mar Caregiver Resource Center) was to work directly with the families, and that work led me to some deep inner questioning because I tended to hear the same three stories (or variations) over and over again.

• “Grandma was perfectly all right until grandpa died.” 
• “Grandpa was perfectly alright until he retired and didn’t know what to do with himself anymore.” 
•  “So and so has never been completely alright—she’s always been somewhat depressed—but now that she's living alone, things have really gone south: she has full- blown Alzheimer’s.”

I worked with hundreds of people over more than 6 years and after awhile I started to think: if this is just a physical illness with a physical cure, why am I hearing these stories so often? In recent years some people have started to research this very thing, and they think we could bat down the incidence of Alzheimer’s Disease by focussing on social solutions that might help people be less susceptible.

I hope that in this post you will read something new and that it will inspire you to make a change in your life or in the life of someone you love. First, I’m going to tell you about how important this is. Then I’ll share just a little about the science related to Alzheimer’s Disease so you understand what drug researchers have been focusing on and then a very famous study that seems to contradict the science. I’ll talk about recent studies that might point to social solutions. And I’ll end with helping you think about how easy solutions like that could be and ask you to start with one simple thing I hope you’ll do with your family or friends tonight.

Let’s start with why this is important.

Alzheimer’s Disease has an enormous impact on our country. 

There's a LOT I could say about this, so I'm going to point you to the latest statistics from the Alzheimer's Association for a start, but here are just a few points that definitely concern me! 

• The likelihood of getting dementia goes up the older we get and, according to the latest statistics from the Alzheimer’s Association, 1 in 3 people have some kind of dementia by the time they die.

That’s scary enough but guess what?

• The elderly population—who is most likely to get this illness—is the largest and fastest growing population in the United States because the Baby Boomers are just starting to hit the age when Alzheimer's Disease and other age-related dementias start to really become an issue. (According to the Alzheimer’s Association, if nothing changes, the number of people with age-related dementia is expected to triple in 34 years.)

• This year, dementia is expected to cost this country 236 billion dollars. Obviously, in the future this number could be going way up!

• And these statistics, of course, do not address the emotional, physical and financial toll on the families trying to take care of loved ones. 

Obviously something needs to be done and there’s a lot of research being devoted to trying to solve the problem. 

So let’s look at that.

The reason why so much of the research is focussed on a physical cure is because there are physical things that seem to be correlated with the disease.

As you can see from this drawing provided by Beaumont Health System and the Michigan Head and Spine Institute, which is doing some of this research, the brain of a person with Alzheimer’s Disease looks different from a healthy brain. There are unusual features—protein deposits and alterations in protein structure called plaques and tangles--that can be seen in the brains of people who died of Alzheimer's and they seem to increase the further along the disease had progressed while the people were still alive. Eventually the brain starts to atrophy and shrink, and fissures and holes start to appear. So the drug researchers want to find something that will either clear up these plaques and tangles or prevent them from occurring in the first place.

And that makes sense as far as drug research goes...but is that the best and only approach to reducing the incidence of Alzheimer's Disease and age-related dementia?

In 1997 an article was published in the journal Gerontologist by researcher David Snowdon about a famous project, still going on today, that we in the Alzheimer's field call “The Nun Study.” At the time of that report Snowdon had interviewed and tested the memory and cognitive skills of 678 nuns over their lives and when they died he did an autopsy of their brains. Lots of interesting things were discovered but here’s the story I found of most interest.

One of the nuns, Sister Mary, lived to be 101 years old. She was mentally sharp and scored incredibly high on all these tests, including the last one she did just a few weeks before her death. But when     they cut open her brain, they found signs of atrophy and more plaques and tangles than anyone else's they had studied up until that point. According to what had been assumed from the science, she should have had full-blown Alzheimer’s Disease but she showed none of the symptoms.

So this opens up a lot of questions about why. What they know about Sister Mary is that she was very upbeat and optimistic, she took an active interest in everything, and she seemed to be extremely social. Since then, some researchers have been focussing on those particular clues.

The Effects of Social Engagement and Life Purpose

For example, researchers at the Rush Alzheimer’s Disease Center in Chicago did a study on the effect of loneliness and social isolation on Alzheimer’s Disease that was published in the Archives of General Psychiatry in 2007. It showed that people who reported being lonely a lot of the time were twice as likely to develop the symptoms of Alzheimer’s Disease than people who did not and that the incidence of Alzheimer's was NOT related to the amount of plaques and tangles in their brains--it was correlated with a difference in how they warded off the effects of the physical changes those plaques and tangles represent.

An even more recent study published in 2011 by the Rush Center showed that the more social (and less lonely) a person is, the more they ward off these effects. The most social people seemed to be rewarded with a reduction of the incidence of Alzheimer's Disease of as much as 70%!

But loneliness is not the only factor worth considering. The Rush Alzheimer’s Disease Center also did a study, published in the Archives of General Psychiatry in 2012, that showed that feelings of life purpose also seem to make a significant difference. Life purpose was defined as anything that gives people a feeling of meaning such as family relationships, church attendance, civic engagement,    music or art—things people really care about doing. On a scale of 1 to 5 in terms of self-reported meaningful activities, participants with a score of at least 4 were almost 2.5 times more likely to be free of Alzheimer's symptoms than people who scored a 3 or lower.

And there was one last study I'd like to mention that was published in 2015 in a peer-reviewed journal called Maturitas by the Women's Health Ageing Project in Australia. It showed that these same protective effects could come from something as simple as babysitting a grandchild one day a week.

Five days a week had the opposite effect so you don’t want to take this too far... but think about this. Something that might be helpful to your parents or grandparents could be helpful for you! And it’s not just babysitting—it could be sharing a meal together, going to church together, it could be any number of things that people enjoy doing or things that make them feel useful in the family or in the wider world.

So I’d like you to think about what I shared with you today and start a conversation with your family or friends about it.

• Alzheimer’s Disease is a really big problem.
• The science doesn’t always match up with what actually happens with the disease.
• We know that people who are less lonely and have a sense of life purpose seem to ward off the effects of the illness.
• And there are ways that we might help each other with that. 

Now I know that some of the things I’ve been talking about are not going to work for everyone—the statistics do NOT say that! And not everybody is going to be able to change long-standing patterns and ways of living. And not everyone has such a great relationship with their family that it's terribly appropriate to tackle that. But I’m going to leave you with a few final thoughts.

• There are lots of lonely older people out there.
• Developing new habits that bring us close to other people and things we love to do are way easier to do when we're young and could have a significant impact on our well-being as WE age!
• And mutually beneficial relationships can be good for everyone. 

References

2016 Alzheimer's Disease Facts and Figures. (2016). Alzheimer’s Association. Retrieved April 14, 2016, from http://www.alz.org/facts/#quickFacts 

Buchman, A. S. (2012). Effect of Purpose in Life on the Relation Between Alzheimer Disease Pathologic Changes on Cognitive Function in Advanced Age. Archives of General Psychiatry, 69(5), 499. doi:10.1001/archgenpsychiatry.2011.1487. Retrieved April 14,  2016 from http://archpsyc.jamanetwork.com/article.aspx?articleid=1151486.

Burn, K., & Szoeke, C. (2015). Grandparenting predicts late-life cognition: Results from the Women's Healthy Ageing Project. Maturitas, 81(2), 317-322. doi:10.1016/j.maturitas. 2015.03.013. Retrieved April 14, 2016 from http://www.ncbi.nlm.nih.gov/pubmed/25891500

James, B. D., Wilson, R. S., Barnes, L. L., & Bennett, D. A. (2011). Late-Life Social Activity and Cognitive Decline in Old Age. Journal of the International Neuropsychological Society J Int Neuropsychol Soc,17(06), 998-1005. doi:10.1017/s1355617711000531 Retrieved April 14, 2016 from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3206295/

Snowdon, D. A. (1997). Aging and Alzheimer's Disease: Lessons From the Nun Study. The Gerontologist, 37(2), 150-156. doi:10.1093/geront/37.2.150. Retrieved 4/14/16 from http://www.ncbi.nlm.nih.gov/pubmed/9127971

Wilson, R. S., Krueger, K. R., Arnold, S. E., Schneider, J. A., Kelly, J. F., Barnes, L. L., . . . Bennett, D. A. (2007). Loneliness and Risk of Alzheimer Disease. Archives of General Psychiatry, 64(2), 234. doi:10.1001/archpsyc.64.2.234. Retrieved 4/14/2016 from

http://archpsyc.jamanetwork.com/article.aspx?articleid=482179. 

Image of brain:

External Beam Radiotherapy: Beta-Amyloid Plaque Reduction. Provided by the Beaumont Health System for an article by the Michigan Head and Spine Institute.Retrieved April 19, 2016 from http://www2.mhsi.us/Articles/external-beam-radiotherapy-beta-amyloid- plaque-reduction.html

The Great Unlearning Which is Alzheimer's

 I found this article about deep philosophical and spiritual questions related to Alzheimer's Disease to be very comforting. I see the importance in emotional processing and life review in various elderly people, not just Alzheimer's patients. Lots of examples and ideas in this: http://www.crosscurrents.org/webb.htm

Purpose in Life Wards Off the Effects of Alzheimer's Disease

A new study published in the Journal of the American Medical Association Psychiatry Division shows that people who score high on tests measuring one's feeling of having a purpose in life are less likely to get Alzheimer's Disease and are far less likely to exhibit cognitive signs of the disease even when the telltale physical changes associated with Alzheimer's are present. Previous studies have indicated similar things (the famous Nun study, for instance), but specifically studying purpose in life is new and noteworthy.

Add that to studies that show that feeling isolated, lonely and unloved tremendously increases the likelihood of Alzheimer's, and those that show correlations between the disease and depression, and I think we're starting to get a much clearer picture of how Alzheimer's Disease manifests in the elderly population. I imagine this is especially true in Western culture of the current generation!

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

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.

Everyone Has Value, Just Breathing

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.

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.

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.

Conflict Resolution and Family Caregiving

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

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?

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.

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.

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.