What's Tony Thinking

It Is More Blessed to Receive (at least sometimes)


Okay, here’s a terrible thing I think about every now and again. Alzheimer’s Disease. Specifically, whether or not I will get it.

My Dad had Alzheimer’s for eight years, maybe ten. The last three he was in a care facility. It was sad. Sad for him. Sad for all of us who loved him.

So these days when I can’t remember something or someone, I wonder will I, who am like my father in so many ways (unlike him in others), follow him in this particular way, in this cruel illness? It’s a sad and scary thought and thinking it I imagine ways to off myself and avoid a long, drawn out decline.

But then I remember that my Dad’s illness had some aspects of it that were gifts to me. For most of his life he had an irritating habit of concluding a conversation was over when to me (and perhaps others) it seemed at most half-over. He would get up and leave. (True confession: I’ve done this too.)

When my Dad was not well and in the care facility, he couldn’t get up and leave. He couldn’t talk fluidly either, so mostly we simply sat or walked together in silence or with a couple words. Sometimes we held hands. All of these things were gifts to me. Gifts of his illness.

As a culture, and in much of modern medical practice, it is all about cure. How we can battle this, overcome that, and return to full health. Cured! So that’s great if it happens. But it doesn’t always. And in some sense, we all have an incurable condition, “Being Mortal,” as Atul Gawande put it in his wonderful book of that title. What if it’s not all about cure, but also or really about care?

When my Dad was ill, and later my mother and sister, I had the chance to care for them (each in different ways and to different degrees). Maybe I’m being selfish, but this was important to me, and I hope to them.

This is part of the reason I’ve been a skeptic about physician-assisted-suicide, now termed “compassion in dying.” Yes, I understand that sometimes the pain is intolerable and the end too long coming. But I also wonder if the drift toward taking one’s own life (with a doctor’s help) when there is no cure, is because we fear there will be no care? Or there’s care, but we don’t want to be on the receiving end? It’s not news to report that some physicians interest in their patients diminishes to nothing when patients cannot be cured. That may be changing. I hope it is.

There’s a fine essay today in the New York Times, “In My Chronic Illness, I Found a Deeper Meaning.” It is written by a rabbi, Elliot Kukla, who recounts a tough, complicated chronic illness and coming to grips with it. Here’s Kukla:

“With great difficulty, I learned how to accept care. A child of neglectful and absent parents, I had been fiercely independent for most of my life; now, as fatigue gripped my body, I needed help preparing food, showering, doing laundry, managing my medications. This demanded a difficult, profoundly spiritual vulnerability . . .

“We are born needing care and die needing care, and I am no exception. At brief moments in the middle of life, we hold the illusion of independence, but we are always driving on roads we did not build, eating foods we did not pick or raise. Allowing the illusion of my own independence to drop away unmasked a fundamental truth of being human.”

Needing care, and accepting it, was hard for Kukla. It is hard for me. Still, there isn’t anything wrong with it. It’s part of life. “We are born needing care and die needing care.”

Moreover, and here’s my point, in receiving care we may be giving a gift. There was a gift for me in sitting quietly with my Dad (neither of us having anyplace to go). There was a gift in being able to be with my sister in her last days and weeks, fixing meals, doing yard work, running errands and — most of all — just talking.

I don’t want to be romantic about this. I know caregiving can be very tough and utterly exhausting. And in none of my relationships was I a solo or full-time caregiver. I understand it can be too much. I know seeking additional help can, in many situations, be essential.

That said, I hope that should a debilitating illness be in my future, I will have the blessings of care — and the courage to receive it.


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