Monday, September 22, 2008

how did I do in the beginning?

The hardest years for me dealing as a caregiver to my husband with dementia were the first 5 years.
Yes, oh, yes I know the worst is still to come.
In the new books they talk about 7 stages now (used to be 4) and
B is at the end of stage 6.

The first years you just fight it. It is the land of denial.
When he/she has a day and remembers everything then you just tell yourself that this diagnosis is so wrong. What was I thinking?
Golly he knows his whole life history.

Hours later it creeps back in, you notice little things, and he looses
his rings, he hides his money under the cat box, he tell you that he never, ever, ate bread. He just can’t eat bread. Basta!
An hour later he fixes himself a peanut butter sandwich. You are
beginning to doubt your own sanity.

Could it be? Could it truly be that he has dementia/Alzheimer?
How will I know for sure? Am I not being rational?
This man can paint masterpieces, can recite every opera, and can tell you which period is the brilliant period in cut glass. He is a fountain of information.

Surely bright people keep their minds busy so they will not get this.
Surely it is the couch potatoes who just sit who get this. Not my brilliant husband.

Doubt is becoming my middle name at this point and it goes arm in arm like good old buddies with worry.

I truly do not know how long before I accepted it.
Probably a year, then my kids took so much longer and gave me a hard time.
They, all the family, thought I was exaggerating.
They were not here 24/7 . This creeps in a single little ant in your pantry and
one day you open the pantry and you have a colony of them.

For years I went to bed thinking about B, last thought before I fell asleep.
Supplications and deals made with God. Just before I would say “this can’t be so”
I’d wake up in the morning and first thought was about the illness.
Then thinking about my deals with God, fresh in the morning I started to doubt God. So the deals were off till the evening when the routine would start all over again.

Years I did this.

Now we are year 10 and I have a very hard time remembering the man who painted master pieces, who taught me about art, antiques, operas, music,
Vaguely now and then a film shows up in my mind with little details, seeing him paint, us driving for a fun day out, dancing in the kitchen without music. Oh gosh, did all this happen with the person I am looking at now?

Was it all real?

1 comment:

Anonymous said...

Thank you for posting these thoughts. They are actually reassuring.