Re: Another by

[Guest guest]

This is how it is, and yet, we are the ones hovering, and looking. We don't

know what is in their minds. It really makes me want to cry.

is a master at writing, and has expressed his feeling to the core.

I will always treasure what is being shared with us.

I don't know the name of our sender, octoryrose, but I want to thank you

profusely for such fine a analogy from , of his experience with

AD.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy

In a message dated 5/8/2006 6:41:19 AM Central Daylight Time,

octoryrose@... writes:

The End of Act One.....and Now

an Intermission of Indeterminate Length

I have seen Alzheimer's disease described in five stages, and nine

stages, and most recently in twelve stages. I have always thought of

it as a disease in three acts. The first act is the semi-private

act. The script is mostly within my own head. Only those around me

really know I am not " myself " but I am in-effect acting the part of

my old pre-Alzheimer's self.

After an intermission of indeterminate length, where I hang around

the lobby and slowly deteriorate to the point where I cannot go back

on stage and pretend that I have not changed who I was and how I

previously acted, the curtain rises on the second act. This act

takes place in a series of increasingly restrictive residential

facilities. Places with names like " Peaceful Gardens, "

and " Tranquility Place. "

Act Three takes place in a nursing home, hospital, and perhaps a

hospice. It is the end of my play. As people leave the theater I hope

they remember me as I was before we were all forced by circumstances

to watch and " act " in the Alzheimer's disease play.

For me, act one lasted about three years. Most of that time while I

was on stage I was in disguise and peeking out of an almost invisible

closet. Aside from the other cast members (family and close friends)

no one in the audience knew about my Alzheimer's disease. What

University advertises a faculty of PhDs with Alzheimer's disease?

What student would believe their low grade was due to their own

performance rather than the plaque filled Alzheimer's mind of their

instructor?

For two of the three years I won outstanding teacher awards! The

third year I was asked privately if I would graciously withdraw from

the competition so someone else could win. (I'm not sure if this is

a reflection of my teaching ability or the sad state of class-room

teaching in general.) On the last night of my teaching career I sat

in a restaurant with my students as they celebrated the end of the

semester and I privately grieved the end of my teaching career. That

sweet and sour meal was my last taste of a twenty year career of

teaching and consulting. I felt the curtain coming down on my own

first act as I left the restaurant.

I now wander around the lobby (my house) until such time that despite

the best efforts of my caregivers I become a serious threat to myself

and/or to others. At that point the chimes ring, the lobby lights

flash, and the stage lights begin to dim. Act two will begin!

There really isn't much to do during an intermission. You stand

around and talk about the weather, while you try to nurse one gin and

tonic to last the entire intermission. You have a vague idea what's

going to happen in the next act but you don't talk about it because

it might ruin it to for other people who didn't even understand the

first act. You know that for you awareness of the play ends with act

two but you will be the star of act three. In fact many of those

sitting around you know the same fact but it just doesn't seem

appropriate to talk about that right now.

So, here I sit, in my office in my home having done all I want to do

with my garden, having completed all the home repairs I want to

complete for the rest of my life, and spending most of my time now

writing disease driven vignettes. I am no longer challenged in the

ways I was when I taught. I cannot measure my abilities to think and

communicate in the same way I did when I was a teacher. I have

already completed one round trip of visiting all my family members.

I know sometime in the near future door locks will get changed,

windows will be nailed shut, neighbors will be on the look out for

wandering, knobs will mysteriously disappear from the stove, and the

oven will stop working. The TV will work, but that's about all that

won't change in the house. Not only will my car keys disappear, so

will the car! No more unsupervised time with my Granddaughters.

Pleasant people I don't know will start showing up and just sit

around looking at me. They will keep offering to help, but I won't be

able to think of anything they can help me with. I will still see,

hear, feel, walk and talk. I will dress and undress myself. No

trouble going to the bathroom. Why will they constantly be hovering

around me?

I have no sense of how long I will be able to enjoy my retirement at

home with my family. I had once thought these would be the brightest

days of my life. Work long and hard and then enjoy carefree days in

our paid up house, with no bills, and a 401k plan which was growing

faster than we could spend it.

I had pictured it in my mind... really what difference does it make

what I saw or thought? What counts, what means is what is. And what

is, is me. Full of self doubts, fearful of tomorrow and not fully

understanding today. Surrounded by loving caregivers who share many

of my fears - self doubts, fear of tomorrow - yet we do not and

cannot share the same state of mind.

Stay tuned….I will, as long as I can.