I didn’t go to see my father on Father’s Day. I went the day after.
For years, every day has been the same to him. There’s no Christmas, no New Year’s, no anniversaries or birthdays. Time passes differently when you’re mired in Alzheimer’s; you let other people keep track of it.
He is asleep when I show up. He sits at the table waiting for lunch, his head hanging onto his chest. Around him, four elderly women also sit at the table. Like him, they are the fortunate ones. They are clean, their hair is combed, their nails are polished, their lunch is coming — brought on trays by cheerful women dressed in smocks.
In the background, you can hear Lucy and Ricky bantering. But mostly, you hear the soft tread of feet on the carpeting, the occasional clink of a spoon, the soothing noise of water being poured.
The women at my father’s table are awake and intermittently alert. Two can still feed themselves. The other two are fed by the staff. But they don’t talk. They watch him and me, as I pull up a chair next to him and whisper in his ear. He doesn’t stir. His head sinks lower onto his chest, where a terrycloth bib is spread. I massage his shoulders, stroke his head.
For an 84-year-old, his skin is amazing — smooth, soft, unwrinkled. His black hair has grayed, then whitened, much sparser than it once was. He jerks occasionally in his sleep, but not enough to rouse himself. His head bobs up and down a little, then stills. I don’t know where he is when he’s awake and I certainly have no idea where he is when he’s asleep. What does he dream about now?
The women who care for him are loving and affectionate. Papa, they often call him, or Mr. Hiram. I always have good talks with them. But I wonder, too, whether they judge me. I don’t come to visit him often enough. That’s what I tell myself.
But it’s a difficult balance. I feel bad when I don’t come, bad when I do. He hasn’t known me in years. Maybe I look familiar to him. I don’t know.
But, as I say, he and the other patients in this home are the fortunate ones. They are regularly fed, bathed, tended to, put to bed on clean sheets. Outwardly, at least, they lead untroubled lives. Meals come and go, wheelchairs are gently maneuvered, diapers are changed regularly, Lucy and Ricky will give way to Dick Van Dyke. At the end of their decades of life, the fortunate ones are soothed by a gentle routine.
What more could they want? What more could their families want?
Everything, I think. Not this. Not this endless ending to active, productive lives. Something else. But what? Don’t ask me. I don’t know the right answers. I just know — and see — the wrong ones.
I sit and smooth my father’s bristly hair back. Is he dreaming of his younger, healthy days? Did he ever, in his life, dream he might end up like this?
(Copyright 2009 by Ruth Pennebaker)
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In these situations you lose the safety of black/white answers.We just muddle through.Thanks for sharing this Ruth
My mother went through the same thing, except that she died before she got such advanced dementia. She always recognized the people who came to see her, and she always begged me to take her out of the place where she was living. That was really hard, but I couldn’t manage her at home. Dementia generates so much guilt. To my knowledge, nobody studies how to make life more interesting for those people dying slowly with it. The answer cannot be Lucy and Ricky.
Ruth, this is so powerful and compassionate. It touches me deeply in many ways that are difficult to express. You say it all. Thank you for sharing.
I imagine not being recognized must be very hard. And the conflict between wanting to be dutiful — and to do what’s right — and wondering what’s the point if he doesn’t even know who you are, let alone the duty you owe. But perhaps he gets some distant pleasure, and though you say you feel bad when you don’t go and bad when you do, I expect the not going feeling bad is worse.
Dementia robs people of so much that makes them human and almost all of what made them particular humans. Everyone loves Ricky and Lucy! But as long as you visit, at least your father is still a man with a daughter.
Thank you all. It’s just such a tough business that never seems to end.
Very poignant post! My father had a degenerative neurological disorder that is a little like Alzheimer’s, but he lost his ability to walk or feed himself even as his brain remained alert. It must have been demoralizing for someone who was once so active and articulate (he was a doctor who diagnosed himself long before his neurologist did) to be involuntarily drooling and slurring his words, but he never complained. He died last fall, so Father’s Day was bittersweet for me, too.