Just like that, one otherwise unremarkable day, my mother’s body launched its final chapter in the epic battle against dementia.
Like a major circuit had suddenly shorted, her eyelids dropped to half-mast and her head titled to one side. Her cough tightened its grip to the point of causing her to wince sharply. And after years of confronting the terrors of hallucinations and the molasses of misdiagnoses — all the mysterious stages of Lewy Body dementia and its de-stabilizing variability — the end announced its arrival.
She was only rarely able to get words out at this stage — extremely tortuous for a type A, take-charge gal. Every now and again her brain and motor nerves would align just long enough for something to tumble out in her signature intonation. All that she could recall and express were things deeply embedded in her experience, but it was clearly satisfying when she was able to make that moment come together.
“Your hair looks terrible,” comes rolling right off her tongue all at once one day toward the end, and then the moment is over.
“Thanks, Mom,” I say, genuinely, but kiddingly.
And I am genuinely grateful for the interaction that bears a trace of her former personality. I search her eyes to see if it’s a good time to recollect some of the old friends or relatives she loved to complain about. Facial expressions and an occasional snide comment are the forms of communication she uses to let me know she is still in there. Pissed off, but in there.
It’s frustrating for us both. We both miss her. I find it helpful at these moments, amidst the stale air and still anxiety of the nursing home, to reach back for the calm and transcendence of my Sunday morning yoga class.
Take a good seat; feel the stability as you raise the crown of your head toward the ceiling; inhale slowly; follow your breath; exhale a little longer than the inhale.
I push her wheelchair to the dining room as I had 100 times. Maybe the sudden decline in her condition is temporary. We sit at the dining table as we usually do, with me between Mom and her tablemate, feeding them, maintaining the pretense that we are all sharing a social moment. I convey through body language to the staff that I have it under control.
I select another spoon of food, taking my time to assemble just the right amount, contemplating how much I would hate to be fed.
She really doesn’t seem to mind anymore. Her fingers are down there in her lap, remembering they had a job to do but disconnected from the direction to help them organize for service.
Being fed is bad enough, but being fed by someone who has no sensitivity to how bad it is to be fed is worse. For the employees, it’s a job to be accomplished, conducted for productivity and efficiency.
I could afford to take the time to feed Mom and her tablemate very slowly; trying to allow time for them to provide a cue that they are ready for another bite, including a moment to use a napkin or take a drink, simulating how they might have done it themselves.
(MORE: Welcome to Age 50: Top Caregiving Tips)
Mr. Reynolds comes by, shuffling but confident, commanding his walker as though at the helm of a great destroyer in the Pacific. “God dammit — you bastard — you bastard.”
Maybe there is a particular scene in his head; maybe it’s just frustration at the collective incompetence of all of us who are beneath him, rather than real aggression. Clearly the acute frustration of captivity.
My brother visits from California when he can. In a moment of typical irreverence, he muses about how helpful it could be for all concerned if we could simply shrink Mr. Reynolds and take him along to the office. “Pop him out when office politics erupts … 'Hey, I didn’t say it, he did, and he gets to because he has dementia.'”
By the way, he’s right, you are a bastard, Mr. Lewy Body.
Direct the breath in through your nose and deeply into your body, feeling the expansion. Breathe into areas where you need more space. Exhale fully, allowing your body to release.
“Mom, do you know what day today is?” I ask, a little hopefully, on my birthday. “50, Mom. Can you believe it? How did we let that happen?”
Sometimes it works and sinks in, but not tonight. Or, if it does, she can’t command the expression on her face to reveal it.
I keep chatting; I don’t want her to feel bad that she cannot respond. I chat a little for both of us and pretend that she answers. I imagine that she appreciates that I’m carrying us both through the moment.
Let’s come to our hands and knees. We are going to do a set of cat-cow positions, allowing the breath to lead the movement. Bring your head and tailbone up — and inhale.
I go to the nursing home too often; I can’t seem to help myself. Tilting at dementia’s windmills. I'm able to experience the momentary release of doing something that she appreciates, or that one of the other inmates appreciates.
I am reminded by one of the nursing supervisors about the power of telling someone they are beautiful. You must scream it so that it registers, but it spreads across the face and down into the soul. For people who live in millions of unconnected moments, it is at least a momentary escape from the isolation. The disease wins the whole war and every major battle, but a few minor campaigns are within my grasp.
After dinner, we head back to the “living room” for Jeopardy and Wheel of Fortune, and I notice Mrs. Hastenwrath lying down in Mom’s room when I get there. She is an aged, demented Goldilocks. She checks out the beds with a short nap, and voila, gets to wake up in a whole new reality each time. She’s lovely and quite poised about the whole thing. She apologizes, not really sure why, and asks that I head her in the right direction.
Next time you find yourself in table position, tuck your toes under and let’s move into downward facing dog. Take care to bend your knees.
In the last couple of years before Mom died, my brother would allow a little dark humor to remind us that it was OK to acknowledge that death would be preferable to life consumed by end-stage dementia. He’d relay stories of co-workers in need of comforting when a parent died and how he knew it would be wrong to express jealousy in place of sympathy.
Some days we longed for her death, as we ran out of ways to pretend that there was life left. I’d imagined the end any number of times as I prayed for it to come, usually as I walked to the car after an evening visit, grateful just to get through the sliding doors and out into the night air, real fresh air that surrounded living things, back in the planet of the living.
The last painful challenge was her strong desire to go out to a restaurant. It took two people to lift her from the chair to the bed by that time, so getting in and out of an automobile was out of the question. I could have arranged a transport. But the truth is, I was a coward. Her desire would go unmet.
Back when we still took her out, she would “lighten” when she got out of the facility. She would become terribly depressed when it was time to return. I’d remember her saying years before, with a cigarette between her fingers, “Honey, no one fears death; it’s just a bad death we fear.”
Now I know why.
Make sure to exhale a few counts longer than the inhale. Place your hands together in front of your heart, and we will chant, one time, together, the Ohm, a sound of peace.