Way, way back in the fall of 2013, I wrote about my mother's advanced Alzheimer's dementia and the coping mechanisms I was employing at the time to deal with her long and slow demise. I concluded that essay with the less than eloquent observation that Alzheimer's disease sucks.
It's now nearly 2 1/2 years later, and my mother—or the body that once housed the woman I knew as my mother—is still alive, if not kicking. Only now, the whole thing doesn't just suck. It sucks big-time.
Back in 2013, I wrote about how the process of saying goodbye to a loved one in tiny, microscopic increments, can take years and that those years are exacting a frightening toll on millions of my baby boom cohorts. The online responses to the story attested to just how widespread this phenomenon is, and how harrowing the long goodbye can be for caregivers. But, although I wrote those words once upon a time, down deep, they simply failed to register. It comes down, I think, to the fact that I didn't believe my own words fully applied to my mother and me. I didn't believe that 28 months later, there would be any breath left in her, and that I would ever again feel the need to write about this dreadful topic.
Surely, a woman like my mother, so proud, independent and, yes, controlling, would not hang on indefinitely in a near-catatonic state. Surely, whatever was left of her spirit–or her soul, if you will–would figure some way out of this pitiful and pointless existence.
Back in 2013, I could find humor in my mother's delightfully wacky utterances, and solace in her warm and tender smile. She didn't need to remember my name or my face, or anything about me, to sustain my normally upbeat disposition. I visited her, on average, about once a week, and while those visits were hardly gratifying, they did not leave me drained or depressed. I could hold my mother's hand, kiss her forehead, try to rekindle an ancient memory, and bid goodbye to whatever piece of her mind had departed over the past 7 days. It was not how I would have wanted to mourn my mother, and not how she would want to be mourned. But there seemed to be a purpose to it, like there is with any kind of mourning ritual.
Now, I visit only every 3 or 4 weeks, and, in truth, there is no reason for me to visit at all, save for having to pay her live-in aide, and bringing over adult diapers, baby wipes and protein drinks. (I should add that lugging my mother's diapers up to the drugstore counter is almost as embarrassing as buying Tampons for my ex-wife).
As for my mother, she no longer smiles, no longer says delightfully funny things, no longer looks up at me with puppy dog eyes. There is nothing left of her to which to say goodbye, nothing left of her to mourn. As much as it pains me to say it, my mother is dead. Only she's not.
On my most recent visit, about two weeks ago, I waited in her one-bedroom assisted living apartment, throwing out her junk mail, while she finished her lunch downstairs. When the aide wheeled her through the door—she ceased ambulating some months ago—she looked right at me, and through me. Her facial expression was as blank as a bare wall. She did not respond to my greeting or her aide's frequent prodding. During my excruciating 30-minute visit, my mother, whose penchant for speaking her mind at length was almost legendary, uttered but a single word. "No," she said, when asked by her aide how she was feeling. Even her non-sequiturs have lost their charm. My last five or six visits have followed a similar pattern.
On my mother's behalf, then, there is little left for me to say. In her time, she was a pistol, and a very amusing one at that, after just one drink. At her best, she was truly a woman of strong moral fiber who loved her husband and children in the only way she knew how to love. On the flip side, she would most surely have benefited from being more introspective. I would like to think that in the absence of dementia, she would have gained some wisdom and insight in her declining years, and maybe even learned how to forgive herself.
Speaking for myself, I'll continue to pay the aide, bring the wipes and diapers and try to wrap my mind around the reality of each new day. And I'll be less inclined to say that something sucks, until it really does.