Archive for September, 2009

This is a comment I cut from Mona Johnson’s,blog page. She is in my occasionally humble opinion the owner/operator of one of the finest lay-person’s blog about Alzheimer’s disease on the planet. She is bright, very bright, focused, passionate, and unlike yours truly she values brevity in her crystal clear writing. Check out The Tangled Neuron. And - Three cheers for Jackie, someone who stands up and speaks out! 

 

After talking with Jackie Christensen, I am not so sure that was a good idea. I met Jackie last week at the FDA Patient Representative Workshop we both were attending. She has Parkinson’s, and wrote a great piece in the Washington Post explaining that even though her speech is sometimes halting, she can speak for herself.

This is not just a matter of her personal preferences - it is more a matter of her right to be directly involved in decisions and developments that affect her. She notes that most Parkinson’s organizations do not have spokespeople who have the disease. “I feel as if the voices of those of us who live with the disease — the main characters in this tragicomedy that is Parkinson’s — are being stifled,” she says. A lot of what she says might apply to Alzheimer’s and dementia, don’t you think? 

Note:  Jackie is the author of The First Year: Parkinson’s Disease: An Essential Guide for the Newly Diagnosed and a new book Life With a Battery-Operated Brain - A Patient’s Guide to Deep Brain Stimulation Surgery for Parkinson’s Disease She blogs about Parkinson’s and deep brain stimulation at Living “Life with a Battery-Operated Brain.”

 
I am not proposing we should stop all research on the search for a cure - pill, or event that we should slow down research on the quest for a slow down the progression pill cocktail. I do advocate we spend proportiontely more on psycho-social research and less on the quest for the cure pill.
 
QRD - if you insist on spending some money on the search for a cure for a disease whose cause has a yet to be discovered (in spite of the fact we have been looking in earnest for it for the past 30 years), and if you insist on spending some money on finding a cocktail of pills to slow down the intensification of the symptoms of the disease in most everyone who “gets it:” if you still want to continue stumbling down these thus far blind alleys then at least please consider the British Quality Research in Dementia model may be the best way thus far to go about it.
 
The Alzheimer’s Society of the UK divides its research focus into the three C’s: some funded research for Cause, Cure, and Care (they are considering adding research into slowing the progress of the disease, but haven’t made up their minds quite yet, and are looking for a word that starts with C to describe the new emphasis).
 
All proposals for funding from researchers are first reviewed by committees composed of people with dementia and their carers. They decide the first “cut.”
 
Then another committee of research experts that also includes at least one person with dementia and one carer evaluates and ranks the proposals. All this process is transparent. If proposals are so complicated that only a few human beings on earth can understand them, then perhaps they need to be simplified. If only other members of the research club are able to appreciate them, then let the club members fund the proposals - not the Alzheimer’s Society.
 
Next this committee invites in the top proposers and interviews them - the experts, the people with dementia, and the carers are the interviewers.
 
Those proposals selected for funding are assigned a monitoring group; yep you guessed it, one expert, one or more persons with dementia and one or more carers to periodically review the progress of the research and the grant.
 
What a novel idea, trusting people with dementia, caregivers, and experts to be able to work together to decide how best their Alzheimer’s Society should spend their money.
 
The English Alzheimer’s Society spends 6-10% of their annual budgets on funding research (we spend 40-60% of the National Alzheimer’s Association funding research, but our method of selection, who and how we trust “experts” to decide who gets how much for how long couldn’t be more biased towards bench research over psycho-social research). Committees of researchers sometimes read each other’s proposals and decide who gets what. Board Members of the National Association are researchers. Employees of the organization are researchers. This closed club of folks, none of whom has Alzheimer’s disease, none of whom is required to be living with and taking care of someone who has Alzheimer’s disease, not of whom is required to first consult with people with a diagnosis of dementia, probably of this or that type - these folks decide how best to spend your donation. What about the true stake holders in all this?

 They are encouraged to sign up as “subjects” for research/experiments (sometimes they are reimbursed for their gas and oil expenditures, sometimes they get free physicals the results of which they are seldom told.) They are encouraged to support research efforts by donating money, just like everyone else who is not a stake holder is encouraged. It’s just not very encouraging, but that is how research dollars are passed around by our National Alzheimer’s Association.
 
It’s time for a change. Now!
 
Richard
 

Hello, my name is Richard and I have Alzheimer’s disease. I am deeply moved, I am deeply thankful, and I feel it a great-undeserved honor to have been invited to come so far to share this World Alzheimer’s Day with you. I know I am speaking to kindred spirits, fellow travelers, knowledgeable professionals, and loving carers - all and each of us is in our own way dealing with the personal, family, community and government issues that inevitably arise when the symptoms of dementia begin to overwhelm someone’s ability to cover them up.

I know in this audience, in this country, there are many others speaking up and out about the issues I will address. I salute and applaud your efforts. Keep on speaking up. We are marking World Alzheimer’s Day, personally, I believe the term Dementia is more appropriate, but whatever we call it. Today is It Day. I have come across the pond to preach to what is already a choir of believers. Those who would benefit most from listening to my experiences with my slipping cognitive skills, are unfortunately probably are not in the room.

As you-all already know we as citizens, as communities, as countries and a world community are all in the early stages of an early on-set tsunami of dementia. A flood that will pale the importance and impact of bird flu, swine flu, greedy bankers, unregulated capitalists, and dare I say incompetent and naive leaders.

Seven years ago, after undergoing more than a year of testing everything from my urine to my memory, a neurologist in the United States of America, Houston, Texas to be exact, walked into his office and said to me. “Richard  you have dementia, probably of the Alzheimer’s type.”

What he said after those words my brother, nor my neither wife nor I can recall. We drove home in silence. As I entered my house. I was overwhelmed with emotion and began to cry hysterically, I ran out into the backyard crying. Only to have my wife suggested in no uncertain terms I should come back into the house, because the neighbors would think she was hitting me. Everyone in my family cried for three weeks. We cried until we no longer had tears to shed, and we were all emotionally exhausted. The irony was - here I was a PhD, a psychologist, with little to no knowledge of dementia, much less dementia probably of the Alzheimer’s type.

We were crying for ourselves and we were crying for each other. We were crying for our future, a future turned upside down and inside out by the unexpected visit of Dr. Alzheimer, and his sticky footed army who now apparently were and still are tramping down brain cells between my ears. After I ran out of tears. I turned to Mr. Google and opened many of the almost 17 million Web Pages containing the word Alzheimer’s. It was quite filling, but not very satisfying. Like many folks with too much education, I had hoped to calm my fears with vast amounts of information.

I thought I could control my out of control fears of tomorrow by understanding what was happening today. It did not work. One fact I discovered in my internet wanderings burned into my consciousness “the average lifespan of someone diagnosed with dementia is eight years from the date of the diagnosis.” Naturally, I began to prepare for my own death.

I dragged my family down with me, a fact that to this day sometimes upsets them and still troubles me for doing it in the first place. I went to my local Alzheimer’s Association, and they told me I must get my affairs in order.

I checked out black-and-white videos from their library and saw people in the latter stages of the disease.

I was being pro-active. I was practicing what professionals preach. Three years later, another fact jumped off a web page I was reading. “The average age of someone who is diagnosed with dementia is 72 years old.” Wow,” I thought. I was only 62 at the time. Therefore, 72+8 equals 80 my hand held calculator told me. I had 18 years left. “Hooray!” thought I.
 
Fast-forward to today. Here I stand, 66 years of age, probably in the last days of early stage dementia, probably of the Alzheimer’s type. What to say? So much, in so little time. So complicated, and so simple, both at the same time.

I urge all my kindred spirits, my fellow travelers on this road less taken to stand up and speak out. Though we are often ignored, we have a duty to stand up, speak out, and come out of our closets.
But I digress, even when I wrote out this speech word for word.

If you have met one person with dementia: you know only one person with dementia. Each person’s life has evolved differently. Each person’s brain creates a unique reality for him or her. Each is cursed and blessed with the ability to think about their own thinking. Thus, any cognitive disorder is by definition difficult to catalog, understand, much less predict or alter through eating more blueberries, playing more games on the computer, or swallow more and more pills of this or that type.

So, exactly what is it that I want to get off my chest?
What do I want to stand up and witness to this audience of difference-makers. What is it that only I and the other people sitting in my boat wear shoes almost identical to mine, what do we know that you all don’t know?

I want you to take away with you one fact about use, and several ideas about how to treat us as we face the challenges of dementia. I want and need you to help me as my cognitive skills decline. I want you to enable me to hold on to the world for as long as humanly possible.

First, I want you to know, appreciate, and act as if I am a whole person.

That is the fact I hope no one ever forgets. For indeed I am, and will be up to the moment of my death a whole, complete human being. I am not half-full, nor half empty. I never-ever want to hear you say as I sit mute in a wheel chair, lie in bed, or wander around my village “there is Richard Taylor, only it’s really not Richard, it is just Richard’s shell. He unfortunately is gone.” I am not now, nor will I ever be reduced to existing as a turtle. Just because when you knock on my door I don’t answer, or I answer and I don’t know who you are, or you do not recognize me:

That does not mean I am anything less than a whole and complete human being. It is everyone’s birthright to live a full, complete, joy filled, loving, satisfying, and purposeful, and purpose-filled life.
If I had lost my arm in an accident, my family, the community, the government, and the world would rally around me and seek to provide a prosthetic arm. When a human being is losing the ability to control some of her or his cognitive functions, the family cries, the community draws away, and the governments are too busy saving their banking systems.

For better or worse, right or wrong, people confronted with the symptoms of declining cognitive functions depend on the people seated in this room to love them, the learn about their disability to enable them to be all they can be, and did I mention to love them.
For even now, the waves of baby boomers are lapping at the ankles of their governments to do something about the dementia tsunami. A wave that will sweep away memory, competence, and eventually millions upon millions of lives. The flood will drown me and many, many others, and bankrupt social services.

While at the same time shredding the safety nets for people who cannot help themselves, much less cure themselves of their failing cognitive skills. This year in my country alone, 67,000 citizens will die of dementia-related causes. That is the equivalent of 170 Boeing 747 aircrafts crashing, all within a year’s time.

And now to speak directly to you, the difference-makers, the leaders, the “go to” folks when it comes to dealing with the issues of Dementia and its interrelated forms.

My family and I do not have the resources, both financially and emotionally, to successfully cope with this affliction by ourselves. We look for leadership from our leaders, from our Alzheimer’s Societies to do more than raise money for research. We look to you to do more than provide information, group experiences, places to store us for a day, and pamphlets and forms addressed to meet the present and future needs of our carers.

Research is an easy bucket to throw money into. In the U.S. we are pondering the idea of doubling the amount of money my Federal government spends of Alzheimer’s research. There are or should be clear markers of success-were symptoms lessened or slowed? Was empirical evidence found as to causation? There can be clear answers if research worked. We have thrown as much money as fast as we can for twenty-five years in search of the cure pill. And how much closer are we today than was Alois Alzheimer 101 years ago?

Similarly, money given for caregivers is money well spent, but it is also money easily spent. I assume heaven loves and supports caregivers. I know I am here primarily because my wife, Linda, 38. has given more then I can imagine enabling me to give speeches like this. I would like to acknowledge her as the one who made it possible for me to be here, the person whom I love and who loves me every day. She loves me as I am, not who I was. My wife Linda is here and I thank her in front of you-all for being my partner down a road neither of us wanted nor expected to take. Thank you Linda. I love you. I love her and try to appreciate the difficulties she faces with a, pardon the expression, pain in the butt like me. She is a saint and such people need to be supported. And now to speak of my personal concerns as a person living with the disease, and to share with you the questions I have heard from the voices of hundreds of others in my same shoes. I ask some, perhaps most of you: Why isn’t your first priority - a priority made clear in your budgets, your staffing, and your fund raising - why isn’t the number one priority seeking to understand the psychosocial needs of those in whose name you raise your budgets?

Why don’t you do first things first - directly support your citizens living with Alzheimer’s disease? Why must some of you spend a significant portion of your budget on research for a cure? Why do you so over promote your quest for a cure, when the roadsides are littered with individuals who already have the disease and are not being served by you? Why does it seem and feel to me and too many as if you are the Alzheimer’s carers society? Or the Alzheimer raising funds for a cure association? Please, first things first! Be THE Alzheimer’s Society.

Professionals, the medical community, even carers know what they know, but they do not know, they cannot know us unless and until they make and take lots of opportunities to talk to us, and most importantly, to listen to us.

Next I’d like to discuss what I see as a troubling trend in dementia treatment. There seems a worldwide epidemic sweeping through dementia households to encourage people with dementia to live in the past. “Let’s reminisce about the good old days”  Lets reminisce say the children to the parents. “Remember when?” …and if we do remember smiles appear on everyone’s faces because this is evidence to all that I, their father, mother, sister, loved one is still here.

It is thought that the symptoms of dementia eat away our older memories after they have consumed most of our more recent and short-term memories. Everyone around us lovingly wants us to be who we were. They understood us then. They knew us then. They could connect with us then.

But what about today? Who enables me to stay in today? This day, my day, your day, is all the day we have to live in together right now. Living in today is easier to you. It comes naturally. Living in today is difficult for me. I do not always understand what is going on around me, or in me. I forget and get confused about parts of today, even before the sun goes down. Today is always a partial mystery to me. Is it any wonder I pull into myself,  withdraw, and become paranoid and defensive?
 
And you offer me as an alternative my yesterdays. But they do not meet my needs today! Why is it for instance a sweet young woman comes into my room every night, including weekends, and wakes me up at 4 AM so I can go pee? In addition, if I have a bowel movement she writes it down and there is rejoicing that there was a BM in room 104. Why do you now ask me what I want for breakfast (you have adopted a person-centered approach) when I do not fully understand what breakfast is? Why it is? And what should I know about it. Help me understand today, every day, maybe even twice a day, or thirty times a day. Always introduce yourself. Ask me if I know, or want to know, why you are here, what you are going to do, where I am being taken, why I am going there, how long I’ll be, what happens after that. Tell me the day, the date, the season, something about the weather. Engage me. When you assume I do not need to know, when you act as if my knowing is not your most important priority. When you act this way, it sends an unintended disabling message to me. It tells me my needs come second to most everything and everyone ones.

When you pick out “the right clothes” for me. When you speak for me. When you talk about me as if I am not in the room, when I am. While intending these to be loving acts, the unintended consequence is to disable me from my own sense of wholeness, my own sense of self-confidence and self-competency. I must always try to deal with the consequences of a failing and faulty set of cognitive skills.

You can choose to engage me, to support me, to offer to provide the skills I am missing to complete my task. Or, you can attempt to be me. To act like me, or rather as the me you want me to be. Often you can do it yourself. It’s quicker that way. You can be sure it was done the right way - your way. I need you to honor my way. How do you know what I want to figure out for myself unless you ask me?

The best way to want to stay in today, is to have something you really want to do today. The best way to be a human being is to have a purpose.

Everyone needs to live a purposeful and purpose-filled life. When you lose your job, when you can’t drive, when people begin to stay away from you, even friends and family, when you can’t go out by yourself and you find yourself having to adjust your comings and goings to the comings and goings of others - when all this happens almost at once - is it any wonder people with dementia lose their sense of purpose? They cannot access the support they needed to achieve it - driving somewhere, walking somewhere, doing something on your own and by yourself.

In developed countries, we sleep more and watch more TV. I confess I do not know for sure how the majority of people living with Alzheimer’s in our world spend their time. My world is not the world of most folks living with dementia in this world. But I do know everyone, in every shack, hut, home, community, city, state and nation of the world who is living with dementia is losing or has lost his or her purpose for living. I do know their purpose is at best eroding, and more likely being destroyed.

So what is left for us? Why do we open our eyes in the morning - to shuffle through another empty, confusing, and ultimately meaningless day? A day that is forgotten as it happens? For me, and dare I speak for us, we need your support to redefine our sense of purpose. We need your support to provide opportunities for us to experience what it feels like to be living a purposeful and purpose-filled life every day of our lives.

Some of us need to be reabled. Many who have withdrawn into themselves will and/or can no longer make choices for themselves. They need to relearn that they have the right and the ability, albeit sometimes with your support, to be in charge, as best they can be, of themselves. To be responsible for their own actions.

Ask many folks who are deep into cognitive decline to make even the simplest of decisions and they will say, “You decide, it doesn’t matter to me.” Now, how you help us discover and live a renewed sense of purpose is the topic for another time and another speech. But, please, please when you look into the dulled and silent eyes of someone with dementia, ask yourself, ask them, how you can help them find meaningful activities. Meaningful in the sense that they feel good about themselves when they participate in them.
How many of you can’t wait to be old enough to play Bingo?
Playing Bingo seems to be a great stretch for me when I consider the best use of my time to meet my universal need to feel good about myself. Ask yourselves, “Are my activities entertaining or meaningful and meaning- filled? Do I provide one activity for everyone, or a meaningful activity for each individual under my care?

For me playing Bingo is a waste of my time until I complete activities that make me feel good about myself, Purpose-full and Purpose-filling activities.

I believe professionals and to a lesser degree, carers have an obligation to do more than love us, or like us, or be kind to us. 56. Of course, we want and need this - but everyone wants and needs love in their lives. It is the way everyone wants to be treated, to be respected, to be loved, to be honored for being themselves.

The reality is any progressive form of dementia of this or that type creates new and unique needs in human beings, in us who live with the declining ability to remember and understand and appreciate ourselves, others, our lives, and today.

We need your support in ways that are different from how you naturally love and support others. We need an ever-changing balance between helping and doing, between asking and telling, between assuming we think like you and assuming we don’t think at all or it doesn’t make much difference what we are thinking. This is a very difficult task, but that is why we pay professionals - people who have studied us, people who are trained to listen to us, — that is why we pay you the big bucks to be around.

When I was first diagnosed and folks asked me, What’s It Like to Have Alzheimer’s disease?”

I saw and felt the disease as if I was sitting in my grandmother’s house on Irving Park Road in Chicago, Illinois staring out the window, and viewing the world through her lace curtains. I thought I could see everything that was going on, but obviously my brain had to compensate because I could not actually see through the threads in the lace curtains. Occasionally the wind would gently blow and move the curtains and my view of reality would quickly change. There were knots in the curtain, and I could not see around them so I just sort of ignored the parts I could not see and filled in the missing darkness with my own unique interpretation. It did not hurt. I really did not know I had it, whatever “it” turns out to be, until I stumbled upon a symptom for which my brain could not compensate. I had to admit to myself, and sometimes show to others I forgot, or I was confused, or I misunderstood, or I was not in their moment - I was in my own moment. Seven years later and I see my state of mind as having slowly changed, slowly evolved into what it is, who I am today. As I hope by now you all realize, I am still Richard. I am still me, but me has changed (haven’t we all?).

I am more verbally assertive, some would say verbally aggressive, than I was six years ago. I have rediscovered my temper from when I was two or three years old and I sometimes really believed everyone on earth is here to meet my every need and want. And meet them NOW! I blurt out observations and opinions that sometimes shock even me for their directness and sometimes inappropriateness. I forget, lots and often. Most recently,  I have experienced what seem to be the first troubling symptoms of aphasia. Word searchers are more frequent and of longer duration.
Nouns to name things take a long time for me to find, and sometimes I just block on them and cannot locate them so I substitute another word or a description of definition of the word. Or sometimes I just skip the noun and start with the verb, which makes sense to me but confounds my listeners. I make poor choice. I cannot stay focused. I almost burnt down our house, but ended up only melting an aluminum pot into a blob of aluminum while at the same time filling our house with smoke.

Sometimes I feel I am blocked and most times, I am unaware of it happening. I do not know how to “cover up” this symptom. I am very worried this may signal the beginning of what I hope is a very long time in coming end to my ability to speak.

Sometimes I am unaware that I have forgotten, I am confused, I have lost the train of thought; and I ramble on until the quizzical looks of my listener catches my attention. Then I try to cover up, as best I can. Sometimes covering up just happens. Sometimes I feel as if I am hanging on by my fingertips. Sometimes I feel contented where I am. And sometimes I try not to feel, because I know my fears will exaggerate my feelings and cast a dark pall over them.

And, while I have your attention, please include in your support services all people who have all forms of dementia. All too often the words Alzheimer’s disease takes up all the air in the room leaving those with other forms of dementia wondering who speaks for them, who are their leaders, who wants to understand that they too are, and always will be, complete human beings. 66. Please give thoughtful consideration to my appeals for enabling and supporting me to stay in today, every day of my life. Speaking like this has brought new and deep purpose to my life. I know my time is limited to act on and in this new found purpose.

I am still, and always will be Richard. And I have and always will have-to the moment of my death-dementia, probably of the Alzheimer’s type.

Richard Taylor, PhD