Sunday, September 11, 2011

when do you know it is Alzheimer?

A Facebook friend said I had not written much about the very beginning.
Here it goes :
Bob was very smart, remembered everything in the art world ,names of painters (disliked the modern ones) and all the patterns of early American pressed glass not to mention librettos of his favorite operas.
The man had a great mind, taught me so very much.

We had gone on a trip to Gent in my native Belgium and visited with friends and family when 2 days before our return my friend E had a stroke while we had lunch together. By 5 a m she had left us and I had to work with a confused husband to arrange her funeral. Bob sat in a corner pretty much useless and speechless.
When we left we were just numb. Once home I was sending him out to pay the electric bill and get a few groceries. He returned irate and yelling that the electric company had moved and they would only take gas payments where he went.
He had an argument with the manager as she insisted they had always been in that
office and he knew better.

I calmed him down and we did the rest of the errands together. I figured that since we left with such a heavy load on our shoulders that he just could not handle it.
He never did "dying" very well. He did not paint for 2 years when his mother and sister passed. He just moped. Finally I told him to paint or I would leave so he started to paint again. It did take 2 years !

I remembered the bill incident as one by one he did strange things.
More often I said: I told you so and he would respond "NO YOU DID NOT"
One morning he was not sure if he needed sugar in his coffee. He always took sugar.
That knocked me for a loop.
Visited the family doctor and told him of my suspicions. He told Bob a story and asked him to repeat it , he did it very well. Dr. said: Your imagination or your fear, Jeannot, nothing wrong with him.
I told the kids of every little thing I had written down and I thought to be
suspicious. The kids shook their head. "No way Mom he is so alert, look at his painting". So I looked with my expert eye of having him painting on front of me for decades. I did not see a change. Then one day he asked me :"what colors do I use for the background? I forgot?"
I dragged him to the neurologist. He did some basic tests like "draw me a face of a clock at 3.00 o clock, he did. Told him a story and he repeated it leaving some stuff out. Then another few simple tests and finally the doctor said:
"Mrs. K. I am thinking that you are right. He is in the beginning stages of dementia/ Alzheimer. I can do a test but it costs 1500 and medicare does not pay for it." I told him I did not need the test, I knew.
Still it took a long while before anyone believed me. Most daily stuff he did without a hitch and now and then would throw me a curve that would always shock me.
I so wanted to be wrong. I so told myself daily that I over reacted.
My kids had to be right. Our friends did not see anything wrong with him.
What was wrong with me???
Second visit to neurologist and he said that he was pretty sure now and perhaps we could start him on Aricept. This was in the 1990's and Aricept was I believe the only medicine then. Bob could not handle it, his stomach ached from it.
Besides that he was a Christian Scientist, he had lived his whole life since his grandmother in Science. He was not going to give in with easy for any medication and only went to the doctor to humor me.
He kept laughing while showing me the Mary Baker booklet on his beliefs.
It had not interfered in our marriage before, I went to doctors, the kids did but he was totally devoted, read the Bible and the M Baker book lesson every day.
He had prostate cancer and at my insistence gave in to treatment till it was gone.
This was another struggle to daily try and get him to take the Aricept.
I started to buy books on the disease, Read everything on line and found out that
in Germany they had a drug which had worked very well on the slow decline of the disease. It turned out that it was just approved in the USA I think it was called Namenda.
The cost then for his pills was 600 a month. I did not know if it would help
but in retrospect it did go down slowly, too slowly at the end when he was unaware of anything anymore but by then we had stopped the medication.
Slowly very slowly the children started to believe that something was wrong.
I started to get some support. We went to a group meeting , I did not know what to expect. I asked if I could sit in with him instead of the caregivers.
He was the least affected at that time of all the others. He was beaming as they were singing 1940's songs and telling army stories. he knew it all and was like a peacock. "See I did well in there, I do not have anything wrong with me"
I looked around in the room and a few just sat there facing the floor, some told out of context stories and I had to run to the bathroom to just cry my eyes out.
These poor people, these poor souls, was Bob going to be like that?
Perhaps he would be spared and would only forget a few things.
Outside with the caregivers I was scolded that I let him drive (I do not drive)
I told them he was still in early stages and they all answered "baloney".
Take him off the road.
Next month I sat in on the caregiving group, in the other room they were singing and laughing...we were almost all near tears. Men and women in this group all taking care of someone. The stories shared that day where of stories in late stages and I felt like I was going to throw up.
The female doctor who gave us instructions on how not to let them choke on their food, how to keep up with the norm of things, have eyes checked ( was she kidding me?) - (Bob took off his glasses one day and said these things are no good and that was that)
In his last 6 months when he was in a nursing home a dentist wanted to take out what was left of rotting teeth and give him false teeth. OH PLease the nerve!!!
BTW a friend of mine was billed from the nursing home by a shrink who charged for 2 visits a week to her husband who was comatose. She fought it and won, of course so do be aware!!!

I did not go back to the meetings, all I heard there were horror stories and I was not ready for that.
If I remember right he drove another 3 years and taking away his license was the worst for him as he did not understand that he did no longer belong on the road, that he missed red lights and that it was time.

A friend of his from CA and I decided we'd do one more trip to Torremolinos Spain. We would watch him in stages and different hours if need be.
Our tour guide found him once in the street and brought him back.
Friend A. forgot to watch him.
We had a good time in spite of it all except in airports where they have
2 exits in one restroom and he had gone out the wrong way.
Then our plane seats had been changed and he was separated from me.
When it was time to leave he went for the front and the pilots, that brought on some commotion. It was his last flight.

Early on I was active in preparations, labeled the cabinets with titles :"glasses" "plates" " your shorts" etc...he would laugh but he never really used them
when it was time to use them he forgot much of spelling.
I installed cheap little cameras in drive way to see if he left the grounds and
run after him. One day he got away and walked 6 miles. He had walked into a
youth camp along the highway and it was a miracle he turned around and out the right way as the camp was closed and was a huge place with lakes etc....
He was skinny by then but he could walk like an athlete , he had always walked.

I do not believe there is a set rule on how to detect this or predict it unless the new tests are reliable. A friend of mine only knew her husband was ill when he
put his hand on a hot stove burner and had a badly burned hand. He did not understand why. She had him checked and he was well on his way to D/A
I worked and lived 24/7 with Bob for decades, I knew him too well and I knew
I think from the very tiny first beginnings. It is hard to accept, you do not want that in your life and his/her life.

If a person lives alone a lot of people would not notice much until one day he/she drives 2 states away and wonder why they are there. Happened to a friend of ours.

My best friend one day said : "I knew it when he did not remember Gustaf Klimt"
That did not bother me in the least, I knew the man, he had no respect for modern art at all and would not bother to look at it or remember their names.
If he did not remember Caravaggio then we would have a problem.
You have to know the person in details, if you will, to detect the first stages of D/A. That is my humble opinion.

Today, of course, as I said before, there is a test but how accurate is it?
For years I read that only if they do an autopsy do they know what kind of disease took the patient. This too may have changed.

Bob left us a year ago. It took 13 years from our golden years.
The last 6 months he was in a rest home as I had broken my ankle in 3 places and could not watch him. That part was very difficult for me. Yet in retrospect he had a good time there, he walked the halls and shook hands with everyone and kissed the old ladies hands. He brought joy to some people during the last months of his life.
Here alone at home with me and my son, not knowing who we were he would have been miserable. At least that is what I an trying to tell myself.

FB Friend K. Hope that will help you on your journey, may it just be a false alarm.

1 comment:

Anonymous said...

Thanks Jeannot... reading how vague and elusive the disease was is scary. My husband is saying to me probaby once a week that i didn't tell him something that i did tell him. I'm hoping it's stress and inattentiveness. His job is very busy and very stressful. But i'm paying attention...