Dementia: Caring For Parents With Alzheimer's And Coping With Grief

We are all very much still on this journey. We are the parents now in so many ways, the executors and the advocates, the decision makers, accountants and the schedulers. We no longer act like children with our parents. The see saw has tipped.
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When our dog Tucker died, hit by a car in front of my eyes, I was struck in the days that followed by the way grief, relief and guilt could co-exist in such a cozy fashion. I cried my eyes out as I carried his broken body back to the house. But in the aftermath of shock, I felt an uneasy peace that the yippy, ankle biting, stranger-phobic dog that had added so much stress to my already full life was gone. I'd regretted the decision to get him more than once. But then I'd fallen in love. The girls were devastated by his death, and I ached for our eight-pound ball of unconditional love, but I felt a little ... freer. Lighter even.

I thought about Tucker when my mother first walked back in her apartment, crossing the threshold into the next compartment of her life, after my father entered a memory care residence. What would she feel as she assumed this mate-less phase like a single swan without her companion? How many opposing emotions would collide and swirl in ever-shifting ratios? I imagined she, too, would taste the potent cocktail of grief, guilt and relief in the back of her throat.

Over 50 years of marriage -- not all of it a picnic, to be sure. What marriage is continuous harmony? It is always a work in progress. But 50 years of sharing a bed with someone, of knowing how they take their drink and what their sneeze sounds like or how to prepare their favorite meal. Fifty years of experiences and memories, bad habits and idiosyncrasies, endearing traits and annoyances is admirable by any measure. They had survived. And they had loved.

But genetics is a sneaky thief. The dementia that had claimed my grandmother and her mother before her began to make its presence known in a long, loopy slow dance with my father that tried to trick us at every corner -- a walk through a funhouse mirror. My mother had watched my father's slide with a complicated grief, the kind that accompanies the creeping, terrible erasure by Alzheimer's -- the meanest junkyard dog of incurable diseases. For a loved one, it is death by a thousand nicks.

What would it feel like for my mother, I wondered, to know that my father was physically so close? He was living in a room down a long corridor adjacent to her independent living facility. But he was not really present. He was no longer the strong, robust, affable, alpha male who had supported and provided for her. But now she had reached the end of her physical and emotional abilities to care for him. That abdication carried with it a self-criticism, some shame and a whiff of failure on her part. I hated witnessing her sorrow. But I knew that she would protect us from the depth of her emotions. She is our mother, still, and always. And proper mothering in that generation required a dignity, the things you do and don't share with your child. Even in her darkest moments she will instinctively shield us from the harder things.

My parents had tried to do everything right -- select the appropriate facility ahead of time, one with all the safeguards and structures in place. It has a ribbon of river that flows behind the property and gorgeous purplish-orange sunset views from their windows. While still of sound body and mind, they had moved back east near us, although by then the dementia had already begun digging tiny trenches in my father's brain, establishing foxholes and wiring booby traps, weakening the supply lines.

They had both written DNRs and living wills, had taped instructions for paramedics on their fridge not to be transported to the hospital. They had tried to ensure that no heroic measures would be taken to keep them alive. My mother wanted quality of life only on her terms. Dutifully tending to her own mother in a nursing home, she had vowed never to let things wind down that way for her own girls. She had joined the Hemlock Society years ago, and although she is a Christian woman, she believed that people have the right to determine for themselves when life becomes too much of a struggle. In those days, as teenaged girls, we rolled our eyes at so much rational talk of death. She was ahead of her time. She praised and admired Dr. Kevorkian.

And yet here we were. After all that careful planning and willful determination about how it would end. What loved one can pronounce when it is time for their spouse to move on and move out? The unfairness of that is almost unbearable. But we girls could see the toll. Her strength and fortitude were failing. Caring for a man who was both a toddler and a husband was, in the end, almost the end of her. And lacking the ability to cry "Uncle," the decision fell to her three daughters. And we handled it as best we could.

As my mother walked back in the apartment, blinking in the hushed space, eyes adjusting from the light in the hall, I had to avert my eyes from her face. Her tiny frame was stooped in a way that wanted to break my heart. All of a daughter's pain and confusion in this new father-less world order was echoing and reverberating in different ways in my mother.

We are all very much still on this journey. We are the parents now in so many ways: the executors and the advocates, the decision makers, accountants and the schedulers. We no longer act like children with our parents. The see saw has tipped. And there are many days we grapple with the enormity of that.

And what I do know is that my father would never have wanted this. It was exactly what he didn't want, warehoused with strangers in wheelchairs, drooling and sitting, a vacancy in their eyes reserved mostly for the dead. My father laughed deep and drove boats and polished his cars. He loved his kids and his grandkids and his place on the lake. He wanted to go out with one big bang, a heart attack or in the middle of a glorious dream, asleep in his bed -- who doesn't? But in the absence of extreme physical pain, how do we finally decide when it's time to pull the trigger? Who can say "this is the moment?" Isn't it human nature to want one more hug, see one more sunrise, eek out just one more day until the scale imperceptibly tips past the point of enjoyment, whenever that is? A greed for life is a good, hard-wired thing, until it's not.

I remember, years ago, my mother telling us that a man in our own town had jumped off a bridge after the diagnosis of Alzheimer's. I had thought him a coward then, someone unable to face reality, cheating his family out of time. I see that choice differently now, and while it may not sit well with everyone, I admire him for making the decision he wanted, so that others wouldn't have to. The people who suffer after death are the ones left behind. And we will all be left behind at some point.

I know that my father would have loathed to have borne witness to his current daily life. This was not ever his definition of living. It scared the hell out of him visiting his own mother, contemplating her bedridden incarceration in a nursing home. And while he never discussed it, perhaps it held a mirror up to his potential fate. I see that mirror too, at times, and it makes me shiver.

And so now we are here, my sisters, my mother and I, each nursing our own private cocktails of grief, guilt and even a tiny measure of relief. But none of it, not one drop of it tastes any good.

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