A Day of Private Infamy: An Alzheimer Odyssey Postscript

August 1, 2021. A date of little import in world affairs. A day of savage sorrow, forlorn failure—and exhilarating liberation—for me. Few days in my life have I ever looked forward to so eagerly. None had I ever dreaded more. My eagerness was and remains unseemly and obscene. My dread, overwhelming and persistent.

No more lies, no more “compassionate deceptions” as the experts label it: I will always be here. I will always keep you safe. Don’t worry. Nothing will make me leave you. Together always. Lies. All lies.

None of my imagined redlines and triggers even came. No immobility, no excessive incontinence. Just the daily grind of tending to Sharon and the daily fear for family. Her sleeplessness, her incoherence, her fits of rage, her daily bouts of tears and her myriad fears just wore me down. My plan to have someone else, just as committed as myself, help tend to Sharon derailed years ago. This summer I finally placed ads online and I contacted half a dozen agencies, but no suitable caregiver could be found. Alone I could go on no longer.

The day comes and Thomas hugs her tightly and cries softly, uncontrollably. He more than anyone else has suffered through this slow-motion disassembling of a person, this remorseless disappearing of she who is his mother. We get in the car and Sharon is happy to go for a ride, but before long my sister and daughter are both telling me to pull over and stop the car. I’m shaking uncontrollably, I’m whimpering like a wounded animal, I’m wailing like a frightened baby. Sharon remains oblivious to it. I don’t pull the car over. If I’m not driving, I won’t be able to do this.

We arrive at the house. Simple and soothing. More compassionate deception as someone ushers Sharon aside. Sharon is so elated. She is hugging and kissing everyone. She is happy to be among people she “knows” and loves. I’m eager to leave. Probably too eager, but I don’t want Sharon to see us leave. An image of a grinning German guard directing traffic at the showers won’t fade. But it is not a fair image at all. Good people, genuinely kind people, work here. But I can’t shake the imagery. My mind reels. I think of Mice and Men. George, weeping, with the pistol nozzle placed snuggly to the back of Lennie’s head. This also is not a fair analogy. Not at all. But weeks later, it still haunts me.

I visit virtually every day. Each day is good, but each day I worry that it will be bad. I feel I am playing Russian roulette and that once I am truly relaxed, that chamber with the bullet will finally come around and Sharon will be upset, angry, terrified that I deserted her and left her among strangers. The first visit, and every visit since, we go for a long walk. She stops every few meters to hug and kiss and nuzzle. She is not sure who I am, but she is sure she is loved. I cannot listen to her gibberish 24 hours a day and not grow weary and even exasperated. But for an hour or two a day it is bearable, even enjoyable. And I know I have it so much easier than many who visit others here. With Sharon there is no anger, no sense of betrayal that I have deserted her. No weeping to get home again. This damnable disease affects different people differently and for many others each visit must be sheer hell. I am fortunate.

I remind myself constantly that this is all for the best, as if that phrase ever was a solace to anyone! I remind myself that I could not go on, exhausted and overwrought. I remind myself of the damage it was causing my son. There is a subtle, but profound, difference–one that I did not realize until almost too late–between watching a parent slowly die of some disease like cancer and watching a parent slowly disappear and change into someone different. Both are horribly painful, but the latter is infinitely more destructive of a child.

You read so many horror stories about people. About how relationships dissolve, how they mutate into something lethal and malignant. For years I was terrified I might become a monster. A monster of resentment, a monster of indifference. That I might grow tired of the burden and someday plot to hurt her, even get rid of her like in some pulp novel. You read so many stories of this sort, about how a person just can’t take it anymore.

But that never happens. Just the opposite. I yearn for more. More and more of her as she becomes less and less. I miss her. I miss clothing her, undressing her, feeding her, toileting her, walking with her, sleeping with her, listening to her incoherent babbling and her eerie, fairylike singing: a singsong voice, echoing dementedly the music of the universe. I miss her laugh and I miss her tears and I miss the smell of her mouth and her hugs and kisses and her confusion and her forgetfulness. I miss her joy in seeing a leaf and her awe while looking at a single cloud hanging in a sharp blue sky. I miss cutting her fingernails and cutting her toenails. I miss her waking me all through the night and I miss her insisting on us getting up at 4 or 5 every morning. I miss shampooing her hair and shaving her and brushing her teeth and brushing her hair. I miss her clawing at my arm as I try to shop and I miss her frantically telling me to hush so they won’t find us and I miss her screaming, banging at the door to get out, and I miss her telling me she loves me and I miss her fervently telling perfect strangers that she loves them.

The ending lines of a Robert Frost poem rumble every day through my mind: “I had not learned to let go with the hands, As still I have not learned to with the heart, And have no wish to with the heart–nor need, That I can see. The mind–is not the heart. I may yet live, as I know others live, To wish in vain to let go with the mind–Of cares, at night, to sleep; but nothing tells me That I need learn to let go with the heart.”

A Slovene friend tries to soothe my anguish. She says that this is a chance to relax and enjoy my time with Sharon. No longer exhausted, no longer stressed tending to Sharon’s every need, I can finally appreciate her again and laugh with her again and never be frustrated with her again. “This is a chance few others ever get in life, Joe,” she explains. “This is a chance for you to fall in love with Sharon like you did 40 years ago. Let yourself fall in love with her!” And I do.

But even as I fall, I know much worse is coming. This will all change and I will grow tired, I will grow weary. And at some point she will stop wrapping me in her arms when she realizes it is me. She will stop being able to raise her arms altogether. She will someday stop smiling when she sees me. Someday she will not be able to smile at all. Some unknown day she will not notice my presence or anyone else’s. I fear her fading; I fear more my love for her fading. And even more I fear it will not fade.

It has been three weeks now and all is well. If not well, then better for all. She cries less. She laughs more. I can’t remember the last day I didn’t cry and laugh. I cry every day. I cry because she is so confused. I cry because she is so scared. I cry because she has rarely been happier. I cry because I pity her and I cry because I envy her. I cry that such a brilliant mind is now muffled and I cry because she is not who she is and I cry that she is more herself than ever before. The ebb and flow of my emotions are predictably unpredictable. I cannot get my bearings or steady my mind. I slip from one rush of sentiment to another just as brimming with feelings of conflicting origin.

Yes, yes, it is better now. Much better. For her, for the family, for me. But even now, even now, were it not for my darling son and my own debilitating physical exhaustion, I would bring her home though she does not even know it is her home anymore. Even though it would be the most heartless, selfish act of my life, I would still bring her home. For me. Just for me.

This essay was first published here in August 2021.

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