's writings

[Guest guest]

has early onset alzheimer's - I've posted some of his

writings here in the past - if interested, search his name in

messages and you'll find them. There's also some of his writing in

the Files section (he approved my adding it.) He also has a book out -

which is in the Suggested Reading database. Here's his latest email -

it gives us a glimpse of what he's thinking as someone with EOAD.

" It's Back

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 " 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 I.V., 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!

960 words

March 14. 2008

Addendum to my signature -

When you greet some one with dementia - do you think (or say) - Good-

bye (Or) hello? - How are you? (Or) How were you? It makes quite a

difference in the minds and hearts of people with dementia.

Do caregivers see me as half-full. Is the disease eating away the

essence of my humanity, and leaving only scraps to rot and shrink

between my ears? Am I on the road that ends in a place where I am

referred to (sometimes even in front of us) as an " empty shell? "

In my mind and heart this disease is not a long good bye. I am a

whole person every day of my life. I may be different from yesterday,

but I am still a whole person. Won't you respond to me as if you too

believe this to be true?

Won't you respond to all of us as if we were still members of the

family, still your Dad or Mom, still loved, still entitled to our

sense of self, dignity, privacy, and the same place in your heart?

Please give us the benefit of your doubts.

"