Who did these people used to be? I used to wonder about that when my father first went to an assisted-living center for Alzheimer’s nine years ago.
There was one tiny elderly woman who used to be a concert pianist. Another woman who traveled the world as a buyer for Neiman-Marcus. My father’s roommate, Charlie, who carried his harmonica in his shirt pocket and could easily be coaxed into playing it.
In their individual rooms, you could see proof of who they used to be — the beaming family portraits, the professional certificates, the mementoes of years past. What remained with the patients themselves was always unpredictable. A few, who’d grown up in in communities settled by earlier generations of German immigrants, reverted to speaking German. Some retained social skills, politely listening to you, then responding appropriately, as long as the conversation didn’t go on too long.
Others became different personalities — like the Neiman-Marcus buyer, who could only talk about sex. Her son, I heard, was mortified by the changes in her. My father retained a sense of humor and playfulness. He also clung to good manners. He’d grown up in a poor family and had been schooled in manners by the house mother at his fraternity. Manners had been key to his life, an entree into another social world. They were among the last things he forgot.
Today, I’m visiting my father with my cousin, Cheryl. He stares at her and won’t break the gaze. She looks so much like her mother, my father’s twin sister who died years ago, that she has to be deeply, hauntingly familiar to him. He can’t say much that’s coherent, though. Conversation is something that’s now been left behind.
After nine years, I no longer know the other patients. We moved my father to be closer to us a year and a half ago, and we lost touch with Charlie and some of the other patients we knew. So many of them deteriorated and died very quickly. My father’s illness has been much more gradual. I say I don’t know which option is better, but that isn’t true. Quickness of decline and death seems far more merciful to me.
When dementia is longer lasting and more gradual, the patient and family and caretakers lose the vestiges and memories of who he used to be. Why remember? There’s only the eternal present.
“Your father caught a ball and we played with it for a while the other day,” a visiting nurse told me recently. “I was surprised he could do that.”
“He used to be a gifted athlete,” I said. “He played baseball and softball. He was a pitcher.” Then I wondered why I said that, whether it even mattered any longer. Sometimes, those memories make the present more unbearable.
Cheryl and I talked to him and she took some photos of all of us. When we left, he thanked us for coming. He didn’t know who we were, even though we’d told him repeatedly. But he thanked us because those manners still cling to him, one of the few things that he has left.
(Copyright 2009 by Ruth Pennebaker)
The only thing I can say, Ruth, is that this one made me cry. My eyes are all blurred with tears as I type.
Ruth, my Dad died 3 weeks ago, 3 weeks to the day after we put him in the nursing home. It has been difficult for me since we were so close, but I will freely admit that I think it’s more merciful for everyone that he’s gone now rather than spending years losing himself in a nursing home. I still say Alzheimer’s is the cruelest disease. My heart goes out to you.
So sorry for the loss of your father, Cynthia. Hope you’re doing well.
Anne, thank you.
My dear grandmother clung to an intellectual superiority, after all else had left her, the way your father clings to manners. She believed she was in a home for tourists — of the worst imbecilic sort, she complained.
Sometimes I wonder if Alzheimers is a stripping away and what you have left is some essence. I think that’s wrong, really. But I suppose it means something, as you suggest, that when almost all else was gone your father didn’t forget that he was a gentleman.
My mother-in-law has been in an Alzheimer’s facility for a year. She always “wants to go home.” No one can stand to be around her for longer than a couple of hours because the incessantly repeated “I want to go home” starts to sound like grinding gears. And it doesn’t matter if she’s at a facility or visiting one of her children’s homes. Wherever she is, it’s not home and that’s where she wants to go. But “home” was sold last year to pay for her care.
I remember her. She loved her children and her grandchildren. No one loved to feed people more than she did. Something was always in the oven or on the stove. Friends and neighbors and relatives and even priests would gather around her big kitchen table to gossip and eat what she had cooked for the day. I knew things were bad when she forgot how to cook.
But, what bothers me now, is the afterlife question. If there is one, has part of her already gone there? There’s nothing left here but someone who looks like her and only remembers one thing — that she wants to go home. Did the rest of her go to the great beyond in advance to wait for the tiny part left behind? I truly do not know. Maybe she represents an extremely slow death into some kind of nothingness. Bit by bit, she becomes less and less until all that is left is for the body to pass on.
Or, maybe she gets some kind of free pass or extra points on the other side for the extraordinary suffering caused by losing the essence of self.
Okay, one too many glasses of wine for me…
Now that I’ve dried my eyes…
There is a mystery in this. For some people, it appears that the family and caretakers must, like the patient, “lose the vestiges and memories of who he used to be.” For others, including me, it is not so. I debated this with my father many times. He cared for his mother, and then his spouse, through dementia and death. In regard to both, he would say, “I wish I could remember her as she was before.” For me, remembering them as they were before was the only way to find joy in the misery of this decline, and I clung (and cling) to those memories tightly.
For Mother’s funeral, I selected pictures of her that displayed the lively person she was; my favorite was snapshot of her, mid-60s, stacking firewood that she and my father had just cut. All 5’2”, 100 pounds of her mid-summer, in short shorts and a halter top, holding a log a quarter her weight and laughing at the camera. That’s the Nona Belle I remember.
In cleaning out my father’s room this weekend, preparing to turn his room back into a guest room, I wrestled briefly with what to do with three or four pictures he had on display of his beloved Nona. They were taken in her decline, her memory gone, her body failing. He somehow found comfort in those photos, but that’s not the person I want to remember. I tossed them. I’ll keep the memory of Mother before Alzheimer’s, thank you.
My great aunt, who died at 94, suffered from Alzheimer’s. It’s devastating to see how it takes the ones you love away.