A Survivor's Tale

The Long Goodbye to My Mother

Learning to mourn a loved one with Alzheimer's in small, sometimes microscopic, increments

My mother would've overdosed on mahjong tiles if she knew what was coming.

As we approached my 93-year-old mother and her home health aide, who were sitting outside their assisted living residence, my mom looked up and saw my wife. With a squeal of delight, she smiled and opened her arms wide.

"Susan!" she said, giving my wife a great big hug and kiss.

The fact that my wife is not named Susan — in fact, there is no one named Susan in my mom's life — is not, in itself, a noteworthy development. Forgetting names is what people with Alzheimer's disease do.

What made this a telling moment is that my wife's name was the last in a long, fading line of forgotten names. Now that all the names are gone from my mother's memory, it comes down to just her five senses and a river of tears.

This is life as seen through the Alzheimer's looking glass, as I and a few million other boomers are discovering every day. We're all learning to mourn our aged loved ones in small, sometimes microscopic, increments. It can go on like this for years, and for many of us, it is the most painful of good-byes.

I say farewell to different parts of my mom on every weekly visit. As of this writing, she knows me as someone close to her; someone she occasionally calls her "son." But she has no memory of me or of our 65-year relationship and thus no connection whatsoever to what the word "son" means.

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My name was forgotten 8 or 9 months ago. For awhile, she was confusing me with her late-lamented Uncle Al, a world-class putz, who wore a baseball cap like mine. Then she forgot Uncle Al. But she's still got a thing for the cap. Indeed, her aide tells me she's developed a bit of a crush on a ninetysomething guy at her dining table who also wears one.

So, how do I deal with this long, sad mourning process?

First, I write, and rewrite, her eulogy, telling the remarkable story of a 5'2" dynamo who loved dogs, Mostly Mozart and Franklin Delano Roosevelt; who hated bigots, tobacco companies and Teresa Brewer; who, during the Freedom Rides of 1961, stood toe-to-toe with the racists on our block and helped me transition from the racial ugliness of the schoolyard to a mature understanding of what it means to be a tolerant and decent human being.

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I like to remember my mom at her very best, and I make sure to let those who are caring for her know for whom they are caring.

Second, I take considerable solace in the fact that, in medical parlance, her "quality of life" is relatively high. She is in no pain or discomfort. She is able to fully experience the pleasure of a back rub, and the wonder of an embrace. By sheer luck, or perhaps divine intervention, her primary caregiver proved to be someone fresh out of heavenly central casting. To Steph, her 24/7 aide, my mom's safety and welfare is a calling, not a job. Steph is now my mother's whole world, and I'm more than OK with that.

And, finally, I rely as much as possible on my sense of humor. Happily, albeit it ironically, my mom is providing lots of excellent source material. To wit: On a recent afternoon, a group of Trinidadian aides, all acolytes of Steph, were gathered in my mother's one-bedroom apartment for a frank and raucous debate on how and why Trinidadian men are dogs. The raunchier the discussion got, the more my mom seemed to be enjoying it, but it was hard to know if she understood what was being said. Suddenly, she sat up in her chair and announced to the group, with a full measure of gravitas, "I have never had sexual intercourse." While the aides rolled on the floor with laughter, I reminded her that she must have experienced sexual congress at least twice, as she had two children. But she didn't hear me. She was off in Uncle Al land, or someplace else beyond my imagination.

No, this is not how my mother would have wanted to leave this mortal coil. To paraphrase Woody Allen, she would have overdosed on mahjong tiles if she had known what was coming. Just five short years ago, she was playing tennis and reading the New York Times. But, like most mortals, she didn't get to plan her exit strategy.

It falls to me now to see that she goes out with as little pain, and as much dignity, as possible. And it's on me to witness her long demise with all the maturity and grace that I can muster. I owe her at least that much.

But, I gotta tell you, it sucks.

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