Archive for August, 2008

Patients take action on early Alzheimer’s
USA Today chronicles the life of Richard Taylor, July 24th, 2007

Reaching Out `From the Inside Out’
Claudia Feldman writes about Richard Taylor in the Houston Chronicle, May 15, 2008, 5:30PM

If you suspect, smell, think and/or worry about if you might have the early signs of dementia, mild cognitive decline, Alzheimer’s - and you want a doctor to confirm or deny your suspicions because you hope some doctor or researcher might be able to delay, and/or cure you suspicion -  please consider first applying for long term care insurance before you go to the doctor. Begin this process at least a couple of months before you go to the doctor, so you can apply for three or four long term insurance polices and complete the application process before you go to the doctor. You will probably be rejected by some of them and they won’t tell you why so apply for a bunch of them and then you decide which one(s) you want to accept.

Insurance is a bet. You bet you might get something and need a certain type of insurance. They bet you won’t get it and will just get to keep your premium. Most long term care applications ask if you have ever been told by a physician you have dementia? If you have ever taken any medication for Alzheimer’s or dementia? Just the word “dementia” can be a reason for you to be rejected for this insurance. Just a musing on your chart by your doctor “check to see if he/she may or or may not have some form of dementia” is a reason to scare most all long term care insurers away from you.

In reality they are in business to insure against things that won’t happen, or if they do,  they won’t qualify under your policy. This is not a savings plan for you, this is a profit plan for them. They have figured out ways to insure themselves against the very risks they claim they are protecting you from. They sometimes require that you not be covered for something for which you bought the insurance in the first place.

This is not legal advice. Don’t seek to defraud your prospective insurance agent. However, realize realize they made up the rules. Follow the rules, but wait until you are good and most important ready.

~Richard

A friend of mine is having increasing difficulty getting her loved one to take a shower (I think he is in the mid stages of dementia). Without getting into a deep (and useless) psychological investigation of his early years, I have been asking friends of mine who are living with dementia for ideas on how to enable people with dementia to take their own showers, assisted as needed by a caregivers.

Here are some of our best ideas. Remember these all came from people who are living with the symptoms of dementia:

Arrange for him take a shower while seated on a familiar and chair?  So what if over time the chair gets ruined? Does it really matter?

Encourage him to wear his underwear? If you are helping him you wear yours too.

Ask if he wants to wear his shoes?

Start off with a quick rinse, and work up to a full shower.

Take a cane or walker into the shower, even if he really doesn’t use it all the time?

Put up railings in the shower if it will make you feel safer taking a shower with him.

Ask him to wash you! Tell him you need help showering, too!

Sing in the shower, either to him or with him?

Play favorite songs or music before you get into the shower.

Initiate some form(s) of intimate contact in the shower (that was the most polite way I could come up with for an idea many, many people suggested and probably hoped for in their own showers).

Make up a game about how fast he can shower and time him?

Prepare and eat a snack he likes or drinking something he enjoys while in the shower?

Watching TV or listening to a favorite piece of music while in the shower?

Video tape the two of you taking a shower and show it to him?

I am not the shower expert, these are just some ideas to distract him from whatever it is he fears. My general impression is carers are too focused on us showering-sometimes every day! If it is a medical necessity - we need to wash off fluids and substances we have involuntarily passed - and you cannot do it with a sponge bath in bed, then I guess immediate showers are a necessity. Otherwise - let’s all try to make them more fun and less functional.

~Richard

If only I were a nude mouse I wouldn’t expect anyone to listen to what I had to say about my various symptoms. If only I were a nude mouse I wouldn’t have to engage the symptoms of dementia, except when it came time for me to remember not to get shocked, or which lever to push to eat!

However,  I’m not a nude mouse! I’m a whole person!

With the recent demise of the second in what was hyped to be a pipeline full of new approaches to delay the as yet to be chronicled progress of dementia I’m even more pumped-up about the disproportional attention being paid by the Alzheimer’s Study group to psycho social research (Newt Gingrich and Sandra Day O’Connor, et. al). There seems little interest in including a BIG chunk of ear marked money for psycho social research in the new “National Strategy.”

Would you please offer your .02 cents worth of what the National Strategy for Congress should be/include/fund? And send it to contact@alzstudygrop.org.

~Richard

Frequently folks ask or write me for advice. They want to know what is “the right thing I (they) should say?” I really don’t know what to say. I’m not them. I don’t live with or in them. I’m still a work in progress deciding what I should say! And, in addition to that excuse for not answering them directly with a “dear Abby” type of advice response - What I am finding is there is no one “right” thing to do or say. Some are better than others, especially better in certain circumstances, but life is easier if we just would trust, love, be open, and accept each other for who we are today. And if we don’t know sure for sure, we should ask, we should listen, and we should just be.

Maybe sometimes we just shouldn’t say anything if we are in the midst of an emotionally charged and defined moment. Maybe we should say, “time out.” “I’ll be back in five or ten minutes”

Being is difficult enough without dementia, being and sharing that process of being with one of the sets of symptoms of dementia is made even more difficult by other’s attempts to hang on to, shape, reinforce parts of our being which are either not accessible or aren’t there any more. We are being in the moment regardless of the best or worst behaviors of those around us. It’s just it would be easier for all concerned if we stopped this “long good bye” nonsense” and started to say “hello” to each other more often.

Medically accurate and socially acceptable labels for diseases are issues for physicians to lose sleep over. The fact for us is it really doesn’t need to make a difference to us what words others use to label our syndrome, our collection of atypical behaviors. It’s how we decided to react emotionally to the words we ourselves utter, think about, and tell each other.

We all need to keep constantly reminding our selves and each other of this. We need to enable everyone to be themselves, to understand themselves, to love and to feel loved.  The medical community, society, culture, history are all trying to convince us who we are, and we aren’t - who they say that is. We are ourselves. That, to me is what getting “it” means. At the same time we are, we must be all of ourselves, we are also a person with dementia who loves, needs, lives with his/her caregivers. They too need a “right” answer.

Perhaps the right answer for me is the wrong way to frame it. I need, we need to find a right answer, the right thing to say for us. We need to stop looking for right and start talking to each other about what meets my needs, your needs, our needs.

~Richard

I just read that Alzheimer’s disease has moved up the list of the causes of death of Americans.  It should not be news, nor a surprise that more and more and more people are dying because of this or that consequence of some form of dementia. More and more people are reaching the ages during which the probability of acquiring one or more of the diseases of dementia rapidly increases. What should be news is how little is being done to research how to add value to their lives prior to their deaths and after their diagnosis. What should be a surprise is how little research and research dollars are earmarked for psycho social research into the impact of the disease on individuals and their families.

We need another pipeline of support, not more pills, not more maybe promises, not more of more, we need different. We need to understand how to communicate with individuals in the later stages of the disease. We need to understand how to adjust and support someone in cognitive decline in ways which enable them to still feel they are living an accomplished and accomplishing life. They still need to find/have a clear sense of purpose and means to achieve it. They need to maintain their dignity, self worth, sense of today, and privacy.

We need to understand people are still home….even though others seldom knock on our doors because we either don’t answer, or answer in ways others don’t understand. When we forget your name does that mean we have forgotten you? We no longer have a need to give and receive love? When we become confused, when we wander, when we become agitated - these are all your labels, not ours. What can you do to support us and make us feel good about ourselves? You already seem to know what you can do to us to make yourselves feel good about us - drugs, secure facilities, restraints, and did I mention drugs!

We need more research, more research dollars to fill a psycho social pipeline of information, strategies, insights, support, enabling behaviors. It’s not dying that is the issue for me; it’s the living until then! The solution to the dementia problem is not prevention or a cure, the solution is learning how to successfully, to fully live with the process and consequences of relatively declining cognitive skills. We know, we have studied these issues even less than we know about the physiological processes - and we know so little about those processes, even after 100 years of researching the brain.

It’s not that more and more people are dying of the disease, it’s that more and more people are living with the disease. Words like cure, eliminate, halt, reverse, delay serve the ends of fund raisers, self interested parties, and well intended supports, but not people with dementia.

Why do so many of us have to die before how we live becomes important to politicians, researchers, professionals? Even if the baby boom didn’t exist, even if more people weren’t dying this year than last of the diseases of dementia, doesn’t living with it, living in it touch most of us? Isn’t figuring out how to live with it more important than dreaming of a world without Alzheimer’s? A world without hunger? A world without war? All are wonderful dreams, in the mean time how can the lives of the people and families living with Alzheimer’s/dementia, the hungry/starving people, the collateral losses of human life in war - how can these people’s problems be researched, supported, lessened? Why must we wait for the dream to be a reality? Most of us now alive will be dead. Those who are then alive when the cures come around, if they come around will still live with the wounds of dementia, hunger, and war. What’s the plan for researching and improving their lives?

Our needs today take a back seat in the minds, dollars, budgets and research of our champions, organizations who use our disease on their letter heads. Research for a cure, a delay, a slow down doesn’t just take precedence over research for a more fulfilled life - bench research/drug company research (as my Grand daughter would say) “RULES”! The suffering, the destroyed families, the damaged caregivers, the folks who die because of the disease - these real and now living human beings apparently must die in larger and larger numbers to catch the attention of everyone so they can try harder, spend more. Not to meet the needs of living people, but to meet the yet to be experienced needs of people, many of whom are yet to be born. What has happened to our priorities?  Our humanity? Our love and respect for life, not our fear of death.

Richard

Well, last night I had the strangest dream. I dreamed the leaders of the Alzheimer’s Associations, Researchers, Congressional Leaders, and a host of other professionals all sat down and agreed to sit around the table until they came to some consensus on how to lead this Nation through the greatest public health crisis of the first half of the 21st century.

I knew it was a dream because also seated around the table were many, many people living with one or more of the various forms of dementia. Jointly they agreed to the following:

The first priority for investing limited public funds in the battle against dementia is: people with the disease, caregivers, families, research into their psycho social problems, funding caregiver support services,

Then research into finding a cure for the disease, research into finding ways to delay the progression of the disease -

Let’s ALL talk about this before we rush off in this direction or another! Please, please, please!

Richard

Hello.

When I went to my general practitioner the year I turned 50 I couldn’t help but notice that my annual physical was longer, more extensive, more expensive, and focused on organs of my body that prior to my fiftieth birthday no one including myself seemed to have  paid much attention too.

We spent 15 minutes talking about my prostate. We spent 10 minutes talking about the density of my bones. We spend five minutes talking about the frequency and ease for me to pass water, and almost a full ten minutes exploring in detail my bowel movements, past-present-future. Cholesterol got kicked up the list of priorities of things to worry about. Stress tests were discussed as a definite possibility. And “Oh by the way,” said my GP “Don’t forget take your own blood pressure every few minutes; worry about clogged arteries, blood clots, glaucoma, blood clots, glaucoma, COPD, IBS, RSLS, ABC, XYZ; and last but certainly not least pay special attention to the frequency, duration, and intensity of my sexual experiences. ”

All these concerns were measured by tests and charts comparing them against the “norm” of other 50-year-old males, and discussed with me at great length. I left the office with a handful of new prescriptions another handful of pamphlets and the admonition that it was really important for me now that I was 50 years old to have a complete physical every year.

Two weeks after my fifty-eighth birthday I was diagnosed with dementia probably of the Alzheimer’s type. It had taken bevy or a gaggle or at least large group of highly qualified and trained specialist to collectively agree on the diagnoses.

Wouldn’t it have been wiser of me and my general practitioner to pay more attention to my favorite organ (my BRAIN) when I turned 50? It is past time for many of us baby boomers to establish a baseline of our cognitive functions. How well do we remember. How well do we understand. How well can we figure things out? How “well” is our brain - compared to other brains of other human beings who are the same sex and age?

I now believe that everyone upon living to attend their 50th birthday party should ask their doctor to include testing the various cognitive functions of their brain that year and every three years for the rest of their lives.

When we are experiencing the symptoms of cognitive disorders or deficits it certainly behooves us to immediately ask to be screened for the various forms of dementia. But most certainly having a baseline to compare these results to would be very useful to our physician and to ourselves to appreciate and understand what was going on between our ears.

There is a barrier when applying for long term care insurance if you have previously been tested, screened, and/or mentioned the word dementia in your doctor’s presence. Get the insurance before you turn 50! Currently there are semantic games being played between physicians and insurances companies concerning if they will pay for tests that establish a base line, as opposed to screening to confirm or disconfirm a possible diagnosis of Dementia, probably of this or that type.

I haven’t found the right word to describe screening without saying screening. Many people actually say they are frightened to ask to be screened for dementia. Many people are frightened to the point where they won’t even say the word dementia. A giant step towards lessening those fears would be to include brain screening, establishing cognitive benchmarks, on our fiftieth birthday and then comparing them by using the same instrumentsevery three years thereafter.

~Richard

Hello.

What would the world be like if one day the 6 billion + people who inhabit our planet woke up and suddenly everyone agreed there was no such thing as Alzheimer’s disease? Would the lives of the five plus million people in the United States and millions more around the world who are already living with the diagnosis of Alzheimer’s disease significantly change? Would the lives of their caregivers change? What would change if there was universal agreement there was no such thing as Alzheimer’s disease?

For me, a person who has lived with the disease and the diagnoses of the disease are more than five years I doubt that anything would change. My mind would still wander when I didn’t want it to wander. I would still wander when other people didn’t want me to wander. I would still be unable to recall events, to recall the order of events, to understand events in the same general way that those around me understood the events.

The current discussion centering on the reality of the disease called Alzheimer’s seems to me to be irrelevant and in fact distracting to me and to others. Certainly there are financial consequences, certainly there are egos involved, certainly there are jobs and reputations and even the survival of large organizations dedicated to fighting Alzheimer’s disease at stake. These are indeed real issues for the scientific community to address, and for the media to exaggerate and exploit.

Still, I wake up each morning with symptoms, with the syndrome, with a similar set of cognitive deficits that I seem to share with millions of others. With the general, erratic, and sometimes unpredictable timeline. With an almost random selection of symptoms relative to the symptoms other individuals experiencing. I wonder why don’t I do that, when others who have the disease to it. And I know they wonder the same of themselves as they see me and others. There must be answers I tell myself. There must be truths, certainty, a rational explanation of what why when and where and how to understand, predict, change if necessary my behavior in the next five or six years.

The more people who share my diagnoses I spend time with, the more I am convinced there is no truth to this disease in the sense that the medical model and we are sure or is there, we have just yet been unable to discover.

It may turn out that we discover the brain is smarter than we are. Maybe Hal lives in all of us. Maybe we are smarter than we think or our brain is letting on. But always in the end we are left with ourselves. With our sense in our knowledge of we are, what we are, and how we are. I just don’t have those senses with clarity I did for the past 50 or so years. That’s a real fear of mine. That’s the darkness I feel between my ears and deep within myself.

I still yearn and search for the light. I don’t like living in this flickering twilight zone. I wish I could adapt. The light seems dim, sometimes bright, increasingly flickering. I can’t depend on steady illumination of what is going on around and in me. Perhaps the song I learned as a child was right…

“This little light of mine, I’m gonna let it shine,
Don’t let any one blow it out, I’m gonna let it shine
Carry it all over the neighborhood, I’m gonna let it shine, let it shine, let it shine, let it shine!”

~Richard