Alzheimer’s disease and other dementias rob our loved ones of their personalities. We are often left wondering whether we should try to preserve the person, in the eyes of others, as they once would have wished to be seen? Or do we just give into reality? Do we just accept who they are now, and let go of the past? What would they have wanted? How do we decide? I was faced with this problem with my Dad.
Dad was the absent minded professor type – intelligent, bookish, with a rumpled suit and fly-away hair. My mother made it her business to haul him off to get new clothes, and smooth out his hair, to make him neat. It wasn’t that he wasn’t clean – he was. He just wasn’t tuned into looks. He was an intellectual, a dreamer, had always been dignified, though not stuffy.
His brain surgery changed all of that. Dementia ate his brain, and, with that went his ability to filter his actions. When I took him to doctor appointments, he’d nod and wave at the people we passed, as though he were riding in a parade. He’d greet them in Spanish – his words as disjointed as when he spoke his native tongue, American English. He’d always been kind, and I believe that is what he was doing. Just being friendly. But the manner he had about him was demented. Some smiled kindly, others stared, confused.
Ours was an unusual household when I was a teenager – it was Dad who was in the basement practicing his drums! He’s learned as an adult. That love of a good beat wasn’t destroyed during surgery. But, again the filtering system was no longer operating..
When the nursing home had their usual Friday music, and Dad would be taken down to the dining room, where he’d drum along, on the table in front of him, with the performer’s beat. These performers knew where they were – in a nursing home. It generally pleased them. But Dad looked – damaged. Not the dignified Dad I knew.
I learned to accept these behaviors. To me, it was important to give him a life – any kind of life – now. I had to put away my discomfort at seeing him less than he was. I had to decide with each occasion, what was most important, what Dad would have thought of himself had he been able to observe this behavior from his “old self.” Should I protect my memory of the dignified Dad, the image he would have liked to continue to project? Or would it be best to unleash the un-inhibited Dad? I was always torn.
For my mother it was worse. The pain of watching this man she’d known most of her life, acting so childlike, was torture. She chose to stay away from situations where the public could observe Dad’s sometimes bizarre behavior. I understood.
When I interviewed people for “Minding Our Elders,” several talked of these feelings. The person I most related to, on this issue, was Janice. She explained, in her story:
“Mom always liked to dress nicely. She was very conscious of her appearance. We tried taking her out to eat, but then when she’d drop food on herself – you wonder, should you reach over and wipe it off? How would that make her feel? And she would be so embarrassed to have food all over her. You just don’t know what to do.”
What is right? What is best? What would they have wanted us to do, if they could observe us from their true selves? Life doesn’t hand us a road map. We have to make new decisions each day.
I had to ask myself, was I making the decision to stay away from a situation Dad may enjoy – was I making it for myself? Did I just want to avoid the stares? Is that right? Was I really doing it for him? Whose pain is this?
Most of the time, I decided it was mine. So I sucked it up and took him out in public. I did what I could to help him live that day. But, I was never totally sure. I knew many of his old friends didn’t visit, because they couldn’t stand to see the changes in him. They wanted to remember him as he had been.
How do we give someone with dementia a quality life today, while preserving their innate dignity? We often can’t. That’s part of the cruelty of dementia. We just have to live with it. We have to do our best. It’s all we can do.
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Published On: September 11, 2006