My mother had Alzheimer's, and died at 91. Two of my sisters, aged 75 and 79, also had it and died in 2011. Another sister died at 58 from Amyloidosis. I also have a Down Syndrome nephew. I took an emergency retirement when I was 55, to take care of my mother so she wouldn't have to go into the nursing home, which had been her greatest fear.
I mention the Amyloidosis, and the Down Syndrome, because I'd read a report online at the time my sister died and we'd realized Mom had Alzheimer's, that said a link between the Alzheimer's, Amyloidosis and Down Syndrome was being considered. I have no idea what ever came of that study.
I spent a little over four years with my mother, 24/7, with virtually no help at all. She broke her hip at the end of the fourth year, and I knew she'd have to remain in the nursing home, but I spent a lot of time each day with her during the first year of her stay there. In the years I spent with her, seeing the person I called "Mom" disappear in increments until all that was left was the shell that looked like my mother, was the most precious time in my life, and if I had to do it over again, I'd do it in a heartbeat. What I got from the experience can't be described, but it transformed me.
At the beginning of our time together, I didn't have a clue what lay before us. I tried to find books in the Library on the disease, in order to have some understanding of what I faced. There were only technical books on the medical side. I'd gone to meeting that were held in my hometown, but they only managed to scare me because they were mostly about the legal aspects. So I gritted my teeth, and stiffened my spine, and got ready to face whatever came, and to deal with it then.
I decided to keep a daily journal with the idea that I might be able to provide useful information for people who would find themselves in my position, and needed insight into what was to come. I managed to get the journal typed a couple of years after I'd done all I could for Mom, and knew I had to find someplace where I could take care of myself, and heal. I had several years of major flashbacks, and a lot of anger to deal with, none of the anger related to Mom.
I planned to retype the journal, removing the very personal, family-type things from it, but I had numerous things happen that has kept me from it, and now my vision does. There's without a doubt a lot more information out there now than there was in 1992, so I don't worry about it much any more.
Post Edited (Wilmey) : 2/26/2013 4:02:15 PM (GMT-7)