November is Alzheimer’s Awareness month. To acknowledge how challenging caregiving can be, we have a guest blogger joining us for the next two weeks. Dominic Belmonte, Former President and CEO of the Golden Apple Foundation opens up about his own mother’s battle with Alzheimer’s in a four-part series.
The Accompany | Part 1
By Dominic Belmonte, Former President and CEO, Golden Apple Foundation.
Frequently, the time for those who suffer and succumb to dementia and the ones who care for them is referred to as a journey. In truth, no one goes anywhere. The loved one suffering from dementia goes slowly away, in steps and stages that are only recognizable to the caregiver upon reflection after the loved one dies. We who cared for and witness what occurs only accompany the loved one, like representatives of the present, guiding and protecting the loved one from the harm the real world only provides to the weakened and the halt. And we who accompany frequently misread, fail, fall to our own exhaustion and anger—and guilt, always guilt, the kind only reflection afterward can surface, reviewing the stages, missing the signs of the long goodbye, always ruing what was done, should have been done, said or avoided.
All our stories are different and all of them are the same. As our loved one slips away, we experience stages—not the Kubler-Ross documented stages, the dying experience. These are the stages of those who accompany.
1. The pre-stage is denial—the not seen, the signs that present themselves to us as irritation. With my mother, it was the forgetting of words within a sentence, the names of the familiar, the lost article, the staring at the distance that really represents the unbuckling from the present. I went through various responses that revealed my idiocy and buried my misapprehension. I finished my mother’s sentences, filled in the blank word with a relative’s name, and listened without comment to the repeated story, occasionally rebuking with a sentence that would begin “C’mon, mom….”
The first stage announces that you are now going to accompany.
2. On the Tuesday after Labor Day, a hunch made me drive instead of taking the Metra and I headed towards my mother’s house instead of downtown. My cousin’s phone calls the night before sealed it—suggesting my mother was slurring her words and sounding vaguely off. I drove her way out of worry that the buried thoughts I’d had over the past months connected to my cousin’s concern.
When you look inside the front door window of the home you spent your teens in and see your mother naked on the floor, overturned chairs within sight, the first thought is violence. Your mother has been attacked, even though my late father installed more bolts in his house doors than those that separate cash from criminal. I rush in and lie next to my mother.
“Oh, Dom,” she said in a voice that registered resignation, like she had been waiting for me, disappointed I hadn’t arrived sooner. I didn’t know if she was referring to me or my father, gone since ’96.
I went through the stroke protocol, asking her to smile. “What do I have to smile about?” she said, fake grinning. No slurring. No drooping.
Bad back or not, I picked up my naked mother and carried her to her room. Her soiled nightgown lay by the doorframe. In the effort to rush into the bedroom she fell, soiled herself, removed her nightgown, and spent the evening or the morning trying to get up by crawling from one chair to another, crawling toward the sturdier couch.
That sentence alone marks your entry as a grown-up: I picked up my naked mother. For a moment I thought of how she once carried me, naked and feverish, from a bath, worried. I covered her with a robe.
She fussed over my calling an ambulance. Fussed at the attention the EMTs gave her. She just fell, she insisted but was amenable to going to the hospital to check for broken bones or a bruised head.
It was there at the hospital and the doctor visit following that the conclusion of this stage is reached. The doctors take you aside and say what you feared from that first peering in the front door window. “Your mom shouldn’t live by herself and we won’t release her until you’ve detailed a plan where she will not be alone.”
A string of non sequitur thoughts follows: All my bedrooms are upstairs. I’d have to put a hospital bed in the dining room. But she can’t be by herself. What if she needs to find the bathroom and gets lost? Goes outside? Falls down the basement stairs, the front stairs, the back stairs? What about my brother? His condo is too small. My sister is in Orlando and lives with her mother-in-law. Not fair to Mom or her to try to pack her off there.
You now enter the stage where every remaining thought you have until she dies will include her, factor in her, be about her, and you, and your siblings. Dementia reveals family dynamics as surely as does Thanksgiving dinner. I am the middle child, full of buried resentments that are the domain of my birth order. As the stages of dementia continue, so too is the architecture of family revealed.
To be continued… Tune in Thursday, November 21st for Part 2 of 4.