A lesson in grace: Alzheimer's a sorrow for caregivers, a horror for spouses

A lesson in grace.

I am one of those Baby-Boomers trying to oversee the care of my elderly parents. 

 

In my 91-year-old father's case, it is a matter of a still sharp, though unchallenged mind trapped inside a frail, failing body.

The opposite is true of my 86-year-old mother. Her physical health is fairly good; it is her mind, rapidly being destroyed by Alzheimer's disease, that is the biggest challenge.

And, it is a challenge beyond resolution.

My epiphany this week is NOT those realizations, however.

Rather, I have learned that the grief, helplessness and frustration I feel over their not-so-golden years pales when I allow imagination to let me live for a second or two in their minds, their spirits

.

Inside a small room, my father is more than just trapped in a body too weak to move more than a dozen steps at a time. He is trapped 24/7 with the shell of the woman he married 65 years ago, a remarkable woman once vivacious and mentally sharp, but now unable to speak a coherent sentence or remember what she did five minutes before.

That does not, however, stop her from babbling, stringing words together, all day long -- and in her sleep -- that apparently only she knows the meaning of.

And that, I realize, would drive me mad. Quickly.

Finally, it has driven my always stoic, generally positive father into depression.

Dad had endured for the past year and a half as Mom's Alzheimer's ravaged her mind and memories. Last night, it was just too much.

"I'm just tired of opposing," he said when I made one of my bi-weekly calls.

In the code language we have adopted (since Mom has, occasionally, flown into a rage at any perceived criticism overheard) he was telling me he's exhausted by the losing battle to find some emotional equilibrium for Mom and himself.

Then, unable to speak any longer as he choked up, he put down the phone. Mom picked it up.

"Er, Mom, how are you?"

"Mom?" Confused.

"Yes. You are my Mom. I'm your son, Bob Jr."

"What? That's funny. Who?"

And so it goes.

She hung up.

At least, in forgetting her children, she doesn't have the pain of missing them. So, there's that.

But I mourn her. So much of her has died, even as what little remains continues to fade within a body that has outlived its owner.

You do what you can. 

 

In this case, it was calling the medical provider for my father and asking he be evaluated for anti-depressants.

Then, I prayed.

"End of Life" decisions? Ultimately, we decide nothing. Thank God.

I learned Wednesday that by this time next week, if all continues to go as hoped, my 91-year-old father will be able to return to his assisted living facility, rejoining my mother.

I learned this in a late-afternoon conference call with his medical staff at a skilled nursing facility, where he has been for the past two weeks after nearly a month in and out of the ER with internal bleeding issues.

At one point during this sojourn, I had a call from his doctor asking about how far we wanted him to go with care, should he stop breathing, or have heart failure. We spoke about DNRs ("do not resuscitate") orders, should Dad's Living Will kick in at some point.

We came to a general threshold for letting go: severe brain damage, to the point of losing sentience. We hung up, and I have spent the next few weeks wondering “when?” . . . .

In those tender, plaintive and grittiest of conversations with Dad of late, he wondered himself about longevity vs. quality of life. And, considering my mother's progressive Alzheimer's, he would occasionally confess, in his rasping voice, that living with his frail health and failing eyesight (macular degeneration), and watching Mom drift away, neuron-by-neuron, was not the promise of the so-called "golden years."

Our miraculous medical technology has been wonderful for prolonging life, when intellect and wonder are still intact. But what happens when life implodes into a world of pain, constant hospitalization and increasing helplessness?

Worse, perhaps, what happens when our bodies become earthly tents, sewn shut by artificial longevity as the mind dies inside?

Our ability to extend physical life beyond the spiritual, or for the skeptics among us mortal "sentience," poses moral and ethical paradoxes seemingly unique to our generation. Life is more than machinery, more that mere heart beats and another breath, we are learning.

I am convinced that no thing, and no one is ever "lost." The former is a case of science, in that neither matter nor energy ends; the latter a conviction of faith, perhaps extrapolated into the metaphysical realm from the physical.

My mother seldom recognizes me anymore, has lost so many memories . . . here. But I firmly believe that someday, when the machinery finally fails, what is left of her here will be reunited with what has already passed on, There.

So, all these musings and internal, and ultimately external, debates about What is Life, and End of Life decisions, seem to pale in those undiscovered countries of being.

Ultimately, we “decide” nothing. We may delay the inevitable, but our clocks began ticking toward the great Transition from the moment of conception. And, at the beginning -- and the end -- it indeed comes down to a matter of the heart.

Physically, and metaphorically.

As I heard the medical staff conclude that Dad could be returned to assisted living, and my mother, within a week, something else drowned out the words.

It was my father, in the background, weeping, stuttering out how the news was "wonderful," how he missed my mother, was worried that she would finally forget him, too, and that he always saw "her sweet face" in his mind.

So, “When?”

Not yet, Dad. Not yet.