Articles

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

Hello.

Recently the National Institute of Health released a report on what they thought caregivers should do with and for people living with dementia. “Keep them (us) busy!”

“Help him/her to find a new hobby, volunteer somewhere doing something, fold and refold all your socks and/or towels, play Bingo with himself or others.” say the professionals to our caregivers.

“What about jogging in place, or writing 500 times: “I’ve lost interest in life, especially my own life. I’m scared; I’m lonely”  I sarcastically reply.

Why don’t “they” (whoever “they” may be in your life) get “it”? When you leave your job, you can’t drive, you must of necessity ask for help doing things you did by yourself in the recent past - when this cosmic convergence of restraints comes into your life following the words. “You have dementia, probably of this or that type” you (we) (me) lost our sense of purpose. Our reason for waking up in the morning, and staying awake all day sometimes quickly, sometimes slowly, but always inevitably erodes and eventually disappears.   Our reason for feeling good about ourselves, the reason for working at staying alive, fulfilled, growing, and fully being goes away.

Activities, especially those suggested by people who have no idea who we really are, what our purpose was previous to diagnosis, how we went about realizing it, activities are not a substitute for purposeful activity. Everyone knows this! Everyone knows the difference for themselves.

Please spend a little time engaged with people with dementia helping us figure out what are the elements of our purpose (new and/or old), and how we can participate in activities that fulfill our need to lead a purposeful and joy filled lives.  Thank you very much!

~Richard

I’m looking for 5.2 million people to seek out someone who is living with the diagnosis of dementia or this sort or another, and get to know that person as a whole and complete human being. Pledge to get to know that person as a person of interest, as a possible friend. Every day folks in all stages of dementia wake up and say “hello” to a new day of their lives, while most of the people they meet say good-bye. Become a champion in your own mind and heart and in the minds and hearts of those directly and indirectly wrestling with the consequences of Dementia.

Please consider seeking out folks who don’t have the diagnosis of Alzheimer’s, but rather have been told they have some other form of Dementia. Their symptoms may be somewhat different, but they too are looking for friends, for support, for today, for themselves. These forms of dementia, while just as real, just as fear producing, just as disrupting to families are given at best lip service from organizations claiming to represent all people with dementia.

If you live in the USA about 60% of dementia diagnoses are of the Alzheimer’s type, and 40% are of some other form of dementia. If you live in Europe about 40% of dementia diagnoses are of the Alzheimer’s type, and 60% are of some other form of dementia.

Who has Alzheimer’s disease? Who doesn’t? Who needs a pill to delay the progress of the disease? But, just what is the progression of the disease that I may or may not have; in addition to other diseases of dementia I may or may not have? Are the current answers to these questions making a real difference in the lives of those living with a diagnosis? Do they care? Should they care?

Should you champion friends, family, and friends you have yet to make? Or, should you champion a disease which may or may not be a disease? Whose cause after 100+ years of research we still don’t know, nor would most folks who aren’t invested in the search for a cure say there is light at the end of the tunnel, or the cure is just over the horizon? Can we even hope to cure something whose cause no three people can agree upon? Of course not! Let’s get real. Let’s get our priorities straight. Don’t give up trying to find the needle in the haystack between our ears, but Today, Now, Sign up, Call up, seek out someone with dementia.

Become a champion of individuals, not causes. Become a champion of today! Commit to first meeting today’s needs, and with what is left over meet the needs of tomorrow. Right now we seem to be committed to just the opposite strategy. Give as much as you can to research, more is better, more is quicker. We must compensate for inflation! Today’s dollars buy less research than they bought a hundred years ago! What’s left over, give to meeting the needs of today. Tomorrow’s needs seem to be better funded, better represented, and better promoted than do today’s needs.

Give of yourself to others. Organizations need more money, people; especially people who are losing a sense of themselves and a sense of today need each other. They need you, and quite possibly you need them. Deal with first needs first! The best, the ethical, the moral, the logical, the humane way to stand up and champion this disease is  first to stand up, to witness, to give of yourself and open yourself to others who directly or indirectly say “hello” to others, while others keep saying “goodbye” to them.

*From the Merriam-Webster On-Line Dictionary
Champion
Function: noun
Etymology: Middle English, from Anglo-French, from Medieval Latin campion-, campio, of West Germanic origin; akin to Old English cempa warrior
Date: 13th century
1: warrior,fighter                         2: a militant advocate or defender. 3: one that does battle for another’s rights or honor.          4:a winner of first prize or first place in competition; also: one who shows marked superiority
5: a person like you who seeks out and becomes a best friend to someone who has dementia (I added this definition myself - apologies to George and Charles Merriam, and Noah Webster, and their relatives - RT) Become a champion who is a verb, not a noun! Become active, not just a person, place or thing.

Why did I write this?

I have been both pleased and troubled with recent “campaigns” to raise the “visibility and awareness” of Dementia, probably of the Alzheimer’s Type. I know they are well intended, serve a long over-due need, and so on, but priorities, balance, today vs. tomorrow? More than 10 million people have died while all too few funds had been spent supporting them by supporting research to find a “cure.” Who sets funding priorities (the model of the study? the completeness of the application)? Who leads?

I’m not against research, the search for a cure, solving tomorrow’s problems today….I’m just wondering if given limited resources, is what we have gained from 100 years of spending today for a benefit for tomorrow, is our lack of preparedness and leadership today to meet today’s needs, is our lack of a palpable sense of urgency to meet human needs today and four or five times more humans’ needs in the foreseeable future, is this the time to try harder? Or different? Is this the time to follow or to lead? To trust what others tell us, or to question for ourselves?

You decide! And please, please, if you decide something(s) new should be tried? Priorities should be reordered? Leadership should emerge to support the needs of today? Speak up! Speak out!  If you don’t, we will all be represented by, characterized by, defined by the same individuals who tell us more is better. We should be patient because it takes time to turn organizations around to focus on the needs of person’s with the disease and their caregivers. We should wait until we are asked to speak. Speak when spoken to; react when given the opportunity by others. Others make the choices and we get to decide which of their choices we want to support. After 100 years some have just begun to listen to people who actually live with the disease. And why have they just within the past 18 months decided to listen - why do they seek out more champions - do they have a new plan? A clear set of priorities that address today and then tomorrow’s needs? A leadership strategy to mobilize the Nation’s, the States’, the cities’ resources to confront this world wide public health crisis?

You decide! And please, please, if you decide something(s) new should be tried - for all our sakes, including by the way your own self interests and those of your families and friends,  Seek out those in need, Speak up to those who could/should lead but continue to do more of the same, only more of it.  Be all you can be, by enabling others to be all they can be.

Richard

When I act up, act out, forget, repeat myself, become agitated, tread on other’s boundaries, swear, become confused, act bewildered, fall asleep with my clothes and glasses still on my body and face respectively, slur my words and talk slowly - especially late at night, wander in mind and sometimes in body, begin to speak in the middle of thoughts instead of at the beginning of them, can’t seem to understand what others are trying to tell me, lack the insight and empathy I once prided myself on having for the feelings of others, get mad for reasons no one seems to appreciate - much less understand, and did I mention forget?

I’m not clear there is a difference between the two. I’m not sure even if I knew, I could remember the answer. And if I knew and remembered what different it would make in my life. I’m pretty sure it is the wrong question to ask. I’m pretty sure I should do more of what I said I was going to do more of the day I was diagnosed. I’m real sure I should practice what I preach.

Live in the moment. Enjoy today. Ask for help. Be more open with others about how I feel and what I am thinking. Don’t look back to see what I have lost. Discover and use what I have today. Let tomorrow take care of itself. Trust more. Love more. Forgive myself and stop expecting others to be more like me than themselves.

Is It Me or the Disease?

It’s both. I’m both. I’m neither. I’m me! “Hello”

Richard

The best and most important action we can take (or at least this is what I believe) is seek each other out. Find/form/try groups, people, organizations, services, and if they aren’t working try something or someone(s) else. But, keep trying to find solutions to the psycho-social-physical-real-imagined problems which come attached to the words “you have dementia, probably of this or that type.”

Like the military-industrial complex, that defines how best we should “lead the world” through military superiority,  the drug company-Alzheimer organizations complex has defined for us what is going on between our ears and how best we should respond to it. In the longer run (although they have said for more than 20 years the run is getting shorter and shorter) research will produce a cure for the disease - so they tell us. More money spent on research should shorten the time it takes to find a cure. More money is by definition better than the same or less, according to their tortured logic.

And what of us living in the disease, condition, what-ever they end up calling it? Should we too be patient? Should we advocate more funds for research? Should be follow the leaders into a world without Alzheimer’s, even though we ourselves are living in a world with Alzheimer’s?

Should we watch as more and more dollars are thrown at researchers who sit with mice, models, theories, guesses and hopes? Or should we stand up and advocate for more psycho-social research into how we can better cope with our symptoms?

For me it isn’t even a close call. I’m not advocating giving up bench based scientific research, but clearly the people who allocate our tax dollars for research, the people who ask us for our own money to “support people with Alzheimer’s disease” have lost site of the consequences of this disease, have long held prioities that place research before people, tomorrow before today. One National organization spends sixty cents + of every dollar it raises on supporting the search for a world without Alzheimer’s. That leaves forty cents to cover overhead, fund raising, advocacy, other National initiatives, and oh yes with what is left a few cents for dealing with the world with Alzheimer’s.

That’s back-asswards! It’s people who don’t have the disease focusing more on other people who don’t have the disease than on people who do have the disease. What am I missing here? It’s just plain wrong-headed. And now along comes these two authors who suggest it’s more than a case of the wrong priorities. It is a case of misdirected, misspent efforts based on false assumptions. Assumptions promoted by individuals who have much to gain by promoting the assumptions. These aren’t evil people, it’s just the unintended consequences of their well intended actions produce more problems and less solutions for the people for whom they claim to champion.

Let’s all stand up, all 5 million of us (I realize some may need more support in accomplishing this than others, but let’s all at least try.) Let’s let others arm wrestle over brain aging vs. a healthy brain under attack by a disease which is amenable to a cure.

Let’s ask for, demand more support and research for our issues, today. Many of the national and local organizations which raise money in the name of our disease have decided for us that the research for a cure is much more important (look at how they spend their money), than supporting us, responding to the fears which plague our hearts, minds, and families.

It’s time for an immediate change from a primary emphasis on the search for a cure to a primary emphasis on the search for evidence based strategies and behaviors to support individuals and families who struggle with the symptoms of dementia every day.

Currently the Alzheimer’s cart seems full of eager researchers, publicists, spokespersons for Alzheimer’s organizations whose primary purpose is raising funds to distribute to those folks standing in the cart, well intended governmental officials and relatively well off donors who want to find a cure for this disease.

Behind the cart, way behind the cart, are 5,000,000 horses all of whom are living with and in the disease. They are waiting for the cart to move in their direction. We are impatiently waiting for those standing in the cart with their models, theories, mice, rats, and hamsters to find a cure. Many horses have died over the past twenty or so years waiting for the cart to move, to produce something(s) of value to them. The rest of us still stand and wait. We are told to be patient. We are from time to time told results are just around the corner. The pipeline (whatever the hell that is) is full of pills to help us. We should just open our mouths, and keep them open at the end of the pipe and swallow whatever falls out. The most recent pill that fell out of the pipe fell on the floor because it didn’t do what its inventors/researchers/publicists claimed it would do.

Still, all 5,000,000 + of us are asked to stand and wait.

Write someone. Call someone. Speak Up! If we don’t speak out for ourselves, who will?

Richard

Last week I was speaking in Ohio and someone told me the authors of The Myth of Alzheimer’s (St. Martin’s Press 2008) were also speaking nearby at another conference. I secured a ride over to their conference and listened to them speak, WOW!

Earlier I had been reading their book, at the very same time they were reading my book. We both wished we could speak to each other.

I spent the afternoon with these two brilliant, thoughtful, thought-filled, caring, and very sensitive brains, authors, human beings - thinking out-loud, listening, talking, and getting to know them.

The provocative title of their book, The Myth of Alzheimer’s, is of course a double edged sword. It probably draws as many people to read the book as it draws as many people to not read the book, but think they know what it is all about by the title.

They challenged me and my beliefs about the disease and how I think about the disease.  They like me are searching for answers to questions which seem to come from a growing consensus that the claim/hope/hype coming from the pharmaceutical industry and organizations deeply invested in the idea that Alzheimer’s is a discrete disease and there is and will be a pill to cure it, is not in fact true!. All I others and must do, they keep shouting, is to spend enough money (NOW!) to discover (stumble across) the formula for the pill that will cure the disease. And in the mean time, they tell me let’s also spend more money on pills to maybe slow-down the progress of the disease (even though no one really doesn’t know how or what we mean by the progress of the disease, nor how to measure it).

These authors are in my opinion and I think in theirs also, works and minds in progress when it comes to thinking about, conceptualizing Dementia and it’s many forms.

When I was a young man I was always amazed that whenever the Beatles came out with a new album it reflected exactly where I was. We (they and yours truly) sort of evolved together, but many miles and dollars apart! These two researchers/thinkers aren’t modern day Beatles, but they sure parallel my own thinking process about Alzheimer’s disease, symptoms, syndrome, condition, and/or whatever and however you want to characterize the condition!

Although the bottom line for us who are somewhere in the midst of the disease process is how to cope with it, how to maintain a sense of purpose, how to stay in the moment - in today, it is useful to understand how others have framed for us what is wrong with our brain vs. the brains of others. The book wonders aloud how and why we got where we are. What part of this process is generated by what others tell us, and what part is generated from within? And how much of what is generated between our ears is a natural part of aging, and how much is an actual disease? And how do these two streams interact? Are we victims of a disease, or participants in the natural aging process of the human brain that varies from person to person depending on their genes, education, what they eat, the air and water they inhale and drink, and on and on and on.

To me, it is irrelevant if you fully agree with their interpretation of the science of dementia. What is right-on is their understanding of the psycho social impact of being told you have the disease (or condition, or symptoms, or syndrome) has on people, more specifically yours truly and his family and friends. We have allowed ourselves to be captured by a medical model which just doesn’t fit, doesn’t serve us, and can’t serve us.

We have swallowed messages from drug companies and researchers, and journalists, and organizations which claim to represent our interests that are full of carefully and creatively worded claims that are based on assumptions about how the brain works, why it works a certain way, and how that causes a condition, a set of behaviors we have labeled as a disease.

These assumptions are not necessarily a part of “the big picture” of how the brain works. There is no big picture. To start to paint small pictures is dangerous because we still have no firm, research based, universally accepted understand of what the big picture looks like. The picture is not like an x- ray. It isn’t one or two or even three dimensional. It’s not fixed. It is interactive, and it is dynamic in ways we only speculate about.

The message, the value for me from this book and my conversations with these thinkers is -Pharmaceutical complex and the organizations which claim to support us and the elimination of our disease as the reasons for being–They like me and many others don’t have answers, solutions, even the right questions to ask, to think about, to wish for, or most certainly we don’t have fact based answers to our own questions.  I believe it would be best for those of us living with the diagnosis to understand that no one has the answers to the questions we ask.  Answers that are fact based, and generally accepted by the medical and research community. We are left with searching out our own answers and working them out with each other.

~Richard

Charlton Heston died last week, I didn’t know him personally. I only knew him through the “make believe” of the movies. Someone found the press release he read announcing his diagnosis of Alzheimer’s disease, and I just re-read it. To me it was in effect his announcement of the beginning of his “long good bye.” Reading it reconfirmed for me that many, too many individuals, even those diagnosed with the disease see the diagnosis as the start of a long “good bye.”

We announce and prepare ourselves and others to the fact that we have already started to fade away. It starts the moment someone in a white coat tells us “You have Dementia, probably of this or that type, and certainly with these features.” My reaction and apparently the reaction of Mr. Heston to these words was I’m on my way out! It’s all downhill from here! Don’t look for me anymore; I’m going to be busy fading away and not being me.

We are seldom seen post diagnosis. We seldom speak up or speak out post diagnosis. How many famous people have you seen or heard from after they announced they had been diagnosed with Alzheimer’s disease? Where do they go? What do they do? After all we are fading away. What could we have worthwhile to say? Could we possible grow as a human being after we have been diagnosed? Perhaps we will become someone we would be embarrassed to be, were we capable of appreciating who we had become!

In reality who is embarrassed for whom? Will I be embarrassed for ourselves? Or will other people be embarassed for me? How do you know I’m not accepting, perhaps even contented with who I am today. Even if I’m sometimes frustrated; even if I’m sometimes agitated; I’m still me!

Isn’t it time others who don’t live with the diagnosis focus their energies on understanding, appreciating, supporting, enabling those of us who do live with the diagnosis as we are in the present moment? Don’t concentrate on who we were? Don’t try to convince us we should hang on to yesterday, or last year, or fifty years ago - especially when we are struggling to understand today!  Wouldn’t it be easier to love someone we believed was a whole person, instead of someone half empty?

Many people with dementia and many caregivers keep saying “good-bye.” I, and I honestly believe every other person living with and in dementia, need to hear, feel, and be supported by saying “Hello!” and hear others say to me “Hello.” I need others to answer my “hello” with today - not yesterday! This is not an issue just for those in the late stage of the disease, or just for those in the mid stage of the disease. It starts the day the diagnosis is pronounced. Collectively, and individually we need to find the courage, the support, the understanding to say “hello” to ourselves and each other.

Every day! Every day! It’s that simple! It’s that easy! Reduce stress, increase the quality and quantity of the love you give and receive, enjoy and live in today.

“Hello”
Richard

I continue to write, to speak up, and to speak out because I want others to appreciate that I am someone. Unfortunately, in the eyes of many others I am seen as less than a complete someone. Just because my memory is failing me, just because the hippocampus region of my brain is failing, just because I don’t always think like you do, nor do I remember as much or how you do, please, please know that in my own eyes, and I hope your eyes a whole and complete someone. I am still me: I am still Richard. I am still Grand Pa, and Dad, and Friend. I am just like you -a whole and complete human being.

I am in my mind still a complete person. I will retain that believe up until the moment of my death. I am not becoming any less a person simply because I cannot remember like you, talk like you, or think like you. I am not becoming more and more defective. I am no nearer a date certain death than are you.

I know many want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be, nor do I any longer want to be. I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am, one day at a time. I have a disease that is organically altering who I am, how I think, what I say, and how I see and react to the world. I am changing both from the process of evolution, I am a human being who is growing older, and from the process of revolution, I have a cognitive disease that is fundamentally and irreversibly alerting the ways in which I remember, process information, and see myself. Despite all this change between my ears, still, today, this moment in time I am Richard. I am still Richard!

Please do not mourn the fact I am not who I was, or you want me to be, or we both miss this moment when we focus on yesterday or last year or twenty years ago. I and 9 million others with dementia are progressively missing more and more of today. We miss living together today, we miss the chance to love, and to laugh, and to be all we can be today, when we are mourning who I was.

I ask each of you and all of you to be with people with dementia as they are, and who they are today. It is all well and good to reminisce with us, to make contact with us by encouraging us to share memories with you from our pasts, but I too want to live in here and now, and to accomplish that I need your support.

I am having more trouble now than you are accomplishing this life-affirming goal. I do not always understand what is going on around me, why others are doing this or that to me or with me, what happens next, what happens after that.

However, if I want to stay centered in the present. I want to fully experience your love, the world today, and I need your support more than ever to live in this moment. The unintended consequences of many loving and compassionate acts from many loving and compassionate individuals is to disable me from being myself Many still want, try, wish that I would retransform into who I was.

I am me, and while I’m not always as good at explaining that to you, while my disease may inexpiably change the me I was yesterday or even a moment ago, I am still a whole and complete ME. I may be more agitated, I may be silent for longer periods of time, I may be more difficult to understand, but I am sure you can understand my need to understand I am still me. I am still an adult worthy of and a recipient of your on continuing love. I am still worthy of, I still want to be a recipient of your forgiveness and love.

I am lonely, sometimes for who I was, sometimes because I am losing the ability to understand myself. Nevertheless, I am to the end in need of a sense of presence of myself and what is going on around me. Help me break down the barriers the diseases of dementia place around my mind and my heart.

You can witness to and share your love with me. My heart still hungers to feel love. I still want and need to give my love to a world that I just don’t understand like I did prior to developing this awful disease. You can listen and learn who I am today. It is good to know who I was yesterday and in years past, but what really counts for me is to first, last, and always know who I am today. I want to better know that, and I need your help to understand and achieve that feeling and knowledge.

You can share with me your joy in knowing that you are loved, and you can bring joy into my life by loving me. You can help me communicate my own joy of living. You can help me understand how to forgive others and myself. You can support my efforts to live in the moment, this moment, today, the here and now.

In addition, even as I near the apparent end of my struggle with this disease you can treat me each moment as a whole person.

Am I, or will I ever be half-empty or half full? That is the wrong question to ask. That is the wrong way to view me. That is the wrong way to treat me. I am you, only I am a different you. I still need, want, and deserve a sense of today, a sense of dignity, the right to be treated in a truthful and straightforward manner, the right to my personal privacy.

I do not claim to know what it is like to live with one of the disease of dementia in the minds of everyone. I only speak for myself. But will you please take time to ask yourself, and most especially to ask others who are wearing shoes similar to mine if there is in their minds and hearts truth in these words.

If you find these words apply to individuals you know, please, please, every time you meet them say “hello” and not good-bye.

Richard

Yes, it’s that haunting feeling. It has haunted me for the past seven years. The tight knot my stomach, the lump in my throat, the uncontrolled crying, and the sense of falling into an abyss. This is not a bad dream for me. This is how I feel right now.

I feel as if I am reliving my own response seven years ago upon hearing my neurologist’s words “Richard you have dementia probably of the Alzheimer’s type, and certainly with Alzheimer’s features.” Seven years ago! And now the same identical feeling, the same intense crying is all suddenly back. Feeling as if it will never stop. Feeling as if I have not control over it. Feeling helpless, unable to avoid something awful.

Previously I felt as if I have always been walking one step behind Dr. Alzheimer’s. Every morning I would wake up and see what old and new symptoms he had placed in my IV, as he made his rounds while I was sleeping. M on how to overcome, avoid, or at least deal with each of these symptoms for the rest of the day in ways which would not appreciably impact what I wanted to do that day.

My goal has always been to stay only one step behind the good doctor. My fear was I would fall two steps behind, and then three, and then for, and then I would begin to consider just giving up trying to catch up

I have recently returned from being on the road, meeting, speaking, and listening to people with dementia, their caregivers, and engaged professionals. I try to become engaged with about 500 people a week (People with Dementia, caregivers, Physicians, Nurses, CNA’s, OT’s, PT’s, RT’s, nursing and social work students, medical students and residents, home health care workers, direct care workers and managers, politicians, professionals, leaders, managers and staff of various organizations committed to supporting people with dementia, volunteers, etc.)

Over the course of the last year and a half I have tried to maintain a schedule of being on the road for two weeks, home for one week, and then on the road again for two more weeks. Occasionally I was on the road for three weeks and then home for a week: but always when I came home I reorganize, re-centered, repacked, refocused, and took care of the details as I headed out on the road again.

For the past three months I have on occasion asked family members or friends to accompany me on the road. It is a lot to ask someone to take a week off of work. After-all, I am always surrounded by loving, supportive, people. But when I miss airline connections, but when everyone is busy just after the program is over, but when I become restless at night, but when I can’t remember when someone is picking me up, or sometimes even if or why someone is picking me up - it assures everyone at home and me that I am safe, if sometimes unsound.

To no one’s surprise I diverge and digress from my point. After spending a week and a half at home - I haven’t reorganized, re-centered, repacked, refocused, and taken care of the details for the next two weeks. In fact I am more behind now than when I came home a week and a half ago. I’ve made additional problems for myself as I attempted to deal with my original “to do” list. Help, I realize I’m falling behind - across the board! Not just with one symptom here or there. I’m not keeping up, much less getting ahead of myself with the details of my life. I have a spouse who is an angel, a full time care assistant, dozens and dozens of people around me here in Houston, and literally hundreds of people around me in the U.S. of A., and even a couple of dozen in foreign countries - all dedicated to enabling me, all helping to keep me safe and organized. And now I have observed I am my own worst enemy and an additional force for them to deal with as they attempt to try to support me.

Why don’t/can’t I stop this madness - this counter productive behavior? Ah, now I am back to thinking like a psychologist. But, alas I am not. I no longer think enough like one for the label to mean anything useful to me. I still think about my own thinking, but honestly I almost never can recall what I was thinking about more than a couple of hours after I thought of it. Great ideas and insights come and go like snow flakes in Houston, Texas. First they are pretty rare. Second they exist only in the moment. Third they leave no trace of their existence.

Oh, I still have access to crystallized memories. I still recall what I did yesterday, at least some of it. I know what you just said, and I might recall it in conversation yesterday. But figuring out what to do about tomorrow, today. That has become a real challenge for me. Sticking to a plan is almost impossible, if the plan is longer than a couple of minutes.

Writing about me is still a clarifying and reassuring experience for me. I don’t understand myself “on the fly” as I did, or at least thought I did, in the past. And, those times when I am confident I know what’s going on are not only fewer and shorter, I am less sure of them when they do show up between my ears.

A local merchant recently told my spouse he thought I was such a kind person, and sometimes I acted a little oddly. Me odd?!

That’s why I’m crying!

Richard