Tuesday, November 18, 2008

part two copy from Trusera

Part two on coping with Alzheimer/dementia which was my entry in www.trusera.com

From the beginning of the diagnosis I tried to read everything about this disease. Many times I could not finish the books. When it comes to
the patient being in bed not able to do anything anymore for themselves, choking on their drinks and food, that part I just could not handle, just seeing the words in print made me run for the woods.

Now I am petrified and thinking when will this be our reality?
Next year, next month?
How will I cope then, I am not exactly Florence Nightingale.

So wisdom tells me that experiencing day by day teaches us what to do next. After all this is how I worked the last decade.
I am probably very lucky as so far everything is gentle and friendly.
So many a patients become violent.
It never was B.’ nature but that does not mean that it can’t happen.
I have known such cases.
Did I expect to have to watch the mailman so husband will not be able to hide the bills.
Did I expect to have to force him to bathe and wash him myself?
He was Mr Clean and would shower 3 times a day if he felt he needed it.
Did I expect to have to beg for rides to the grocery store and the drs.?
Did I expect that one day he would not know who I was?
Yes, I thought I was prepared for that one and ..........I can assure you
that I was n’t.
Did I expect him to tell me to get out of his bed? his house?
Did I expect have to hide some of our little small treasures?
We are still in the dark on what he did with a Netske collection.
Did I ever expect him to not know the difference between an
etching and a woodcut?
He was an expert on them.
Did I ever expect that this man who painted every day of his life
would not be able to tell colors, not be able to draw at all?
That was probably the hardest reality, when I told him to put
the bottles in the blue bin for recycling and he asked:”which one is the blue one?”
The man was decorated in Europe for his trompe l’oeil paintings.
He had dozens of one man shows from San Francisco ,Marbella Spain,
and so on.
Asked him to draw an apple and he scribbled some lines and what is worse
he thought it was an apple. Did I ever expect to see that?
Did I ever think he would call our son, his most beloved child, did I ever think he would call him “that man in the house”?

When the man at the Alzheimer meeting told me that nothing will be the same anymore, did I ever comprehend what was going to happen
in spite of what I read? No , I was in denial for everything because
it is too much to take in, too much to break your heart and your spirit.
You do your best one day at a time. If that day is not so good then you will try and do better tomorrow.

I am thinking of all the parents on Trusera who are dealing daily with autism in their lives.
I have seen it first hand in our family. It is hard, it is difficult, it seems at times to be too much to handle. But they do it sometimes one hour at a time.
These are the cards we have been dealt and we must play out the game with all the rules.
On that note I will also say that my Asperger afflicted grandson is an absolute genius and a doll.

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