Washington DC
After meeting with the lawyer on Friday, we met with our financial adviser on Saturday to
talk about the issues arising from the Alzheimer’s. The details probably aren’t relevant here,
but I was impressed by two things. The
first was our process. I’d told him
previously about my Alzheimer’s; Saturday we acknowledged it again at the
beginning of our meeting and he expressed his sympathy appropriately. But after that, we moved directly into the
meeting and were able to talk easily about the nursing home I’ll probably need,
my death, and Marja’s needs during and after my illness. It was a straightforward discussion, and I
was grateful.
The second thing was that he mentioned was that his
mother-in-law had Alzheimer’s and she’s currently at the stage where she is
quite confused about many things (for instance, they can’t leave her at home
alone) but when she is in conversation with them, she is still present. While I’m sure there are limitations to what
she can understand, nevertheless, they are still in what feels like full
relationship with her.
Somehow I’d forgotten this stage and that I
unconsciously saw myself as going directly from a somewhat confused and
ambulatory old man to a bed-ridden vegetable in the nursing home. If I’d thought about it consciously, of
course, it would have been obvious that there are several long stages in
between. One the one hand, his mother's story is hopeful: Even well into the disease, it's possible to still be in relationship with people close to me. On the other hand, it’s likely that the point will
come that my family won’t be able to meet my needs even though I’m still
ambulatory and “present” to myself and to others; this could happen, for instance, if I wandered uncontrollably. Perhaps I will need to be in a nursing home well
before I lose consciousness of myself and those who love me. That thought is scary.
Thank you for sharing your thoughts and experiences. I would like to comment on the fact that each person goes through Alzheimer's differently. My father was diagnosed several years ago. He is now 88, and still lives successfully with his invalid wife (my stepmother) and cares for her with the help of an aid who comes for 4 hours a day only a few days a week, and a visiting nurse who comes weekly. The progression has been slow, and we are all quite thankful for that. He does a great job in compensating for his poor memory by writing everything down in a notebook and on the calendar by the phone. He reveiws his notes several times a day. He takes care of the household chores with the help of the aid. He cooks dinner for my stepmother, and cleans up afterwards.
ReplyDeleteI think the one positive change is his happiness and pleasant, cheerful disposition. This is not the gruff, angry, stressed dad I grew up with! Although he always had a great sense of humor, this new relaxed and cheerful personality is even beyond that. He is more open and sharing, and willing to let others help.
There are things that have changed for the worse. He can no longer care for a garden, and he can't fix things around the house like he used to. Sometimes he will try, but he seems to get caught up in the process, and repeats things at the beginning stage of a simple repair, getting stuck at a certain point over and over again. If it is a particularly necessary repair or process, he slowly sticks to it until he gets it right. That was the case when my stepmother needed her inhaler washed and re-assembled. I had doubts that he could master it. I showed him several times how to do it, and even drew a detailed step-by-step diagram. I had him assemble it while I was there, and he just wasn't getting it. This was so unlike my very mechanical dad of previous years, who could have simply looked at the parts and figured it out in seconds! But still, I had to leave it to him and my stepmother. When I came back the next morning, he had mastered it! I asked him how he did it. He said he just kept at it over and over, until finally he could follow the diagram. Why? Because it was really important! He asks for help with mail and understanding complex bills but still balances his checkbook successfully.
More insight came to me when he had to go off the Alzheimer's medication for a while because of another medical condition. I have had my doubts at times as to whether he really has Alzheimer's at all, since he copes so well. But when the medication was removed, in 2 weeks he couldn't remember how old he was. He entered the hospital to be treated for a foot infection and could not remember what year it was. That was unusual. I understand that a hospital stay will sometimes result in disorientation, but he seemed to have many more memory problems. He couldn't remember that he just ate, or who it was who had just visited him. It was clear that the medication helped, so we notified his doctor to put him back on it as soon as possible.
I am very interested in your blog and will continue to follow it. I think your idea to write about your experiences will help many people. Thank you.
This is a Comment that I would like more people to see, which they won't if it's sitting here, so, in a day or too when I put a different post up, I will put it in as a new post.
DeleteThank you for giving us insight into another stage of this illness.