The hardest part about Alzheimer’s and dementia must be the middle part – when you realize that what you feared is happening and there is nothing you can do about it. It must be infuriating and terrifying.
Mother never was one to dwell on misfortune. “Ignore it and it will go way” had pretty much worked – erasing or at least tamping down the problem. For years, all of us kids were under orders: “You are not to sacrifice your life to care for us. If I get like that ‘Take me skiing and throw me off the mountain’.” Even recently, passing a neighbor in assisted living who was carrying a doll, she looked at me and said, “If I ever get like that, promise me you will just shoot me.”
And she fought…she fought going into assisted living but accepted it on the pretext that it was for Dad’s sake not hers. She fought the nurses who were dressing and undressing her husband – now in a wheelchair. She forgot that Dad couldn’t get up without assistance and that he was falling down – a lot. “Hop up, Bob” she would chirp and Dad, who adored her and was becoming forgetful himself, would oblige and promptly fall (over 20 times the last year of his life.) At one point, the nurses suggested moving Mom to the “memory unit” but Dad said no, she was a wonderful woman and she would stay with him.
As her lapses became longer and stronger, she would sometimes emerge from the fog to ask, “How long have I been like this?” We would say “not long” and reassure her that the episodes were rare and that basically everything was fine – just part of getting old. Should we have talked about it? Does talking about it only increase the fear and sense of impending doom? Does it help – especially if she won’t remember the conversation? I don’t know. In our family the impulse was denial and reassurance.
When Dad died, all of us kids were in the room and we woke Mom to tell her. We really didn’t know how she would react. Would she understand, would she even remember? But her reaction was immediate and profound. I have never, ever seen such grief. After what seemed like a very long time, she calmed down and we got her back to sleep. For the first three mornings, I arrived early to be with her as she woke – fearing that she would have to relive the shock and pain. But she did remember and we talked calmly about Dad being gone. The third morning, I arrived to find her crying, saying “I just want to be with your father.” Channeling the mother of my childhood I said, “Well, Mom, you should have thought of that before you began taking such good care of yourself.” She laughed and said “Well, that’s life.” And from that moment on the grief was in check – and she soldiered on as the happy, cheerful woman we knew and loved.
However sunny she is on the outside, her paintings do give us an indication of what may be tucked away.
But mostly, she is happy and content. She misses Dad and speaks his name under her breath about 20 times a day. I tell her if there’s such a thing as heaven, he’s up there building her a boat, which always makes her smile. She smiles a lot.
I’m so lucky to be sharing this time with Mom, seeing how she experiences the world as “just delightful”. It will be a lot less terrifying when my time comes. If I can end up like Mom, it will be ok.