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 2
By Dominic Belmonte, Former President and CEO, Golden Apple Foundation.
3. The second major stage of the accompany includes strangers—all the strangers now given access to your mother’s home, her rooms, her person, her life. These are loosely banded under the term caregiver. We had eleven of them, and a more motley collection of people with issues and an absence of loyalty or honor cannot be gathered unless dementia calls them to enter. You hope for the truly empathetic and loving who sees the genial, loving, and forgiving mother you have in need of help, conversation, and a meal. You pray you have not brought in your mother’s home someone who would steal, or worse, harm. The companies promise and boast reputations. You ask for recommendations from the network of people in your life—but circumstances have made you and your siblings alone in this journey. So, you choose one and hope.
One caregiver sat on my mother’s couch all day in mourning for her unfaithful lover. Perhaps it did not help that my mother flashed her opinion: “Well, look how you look, dearie. No wonder he ran off.” Sweet mother was becoming filter-less mother, not mean, but certainly more direct than we allow ourselves to be. She lasted less than a week. Another called my mother “mommy” in a way that seemed condescending. She too had issues—an angry boyfriend. Another one sat in my mother’s house not saying anything for the entire time she was there. My mother began to think she was alone again, or worse that the slight woman sitting in her kitchen was a plant—one from the company to see why we kept needing to change caregivers, and, as mother began to further decline, I sensed she saw the wordless woman as an actual plant, one needing little care and no water. Another quit after a day, another never showed. One left her company for another and tried to entice us to switch loyalties and go with her new employer. Eleven women in my mother’s house. The last one was the best of them, caring for my mother and seeing her as she was. But then my emotions were raw from uncertainty and the financial reality that my mom could not have continued care unless her house was sold. The house she’d lived in since right after the great Chicago blizzard of 1967. My father’s house. For fifty years the place Belmonte’s slept and ate, laughed and cried. I must empty and sell her house. I must find a place for her to live. I must move her there and have the house readied to sell.
Such simple sentences to write. Such a crushing, exhausting activity with which to engage.
4. I thank my brother for taking upon himself the task of finding my mother’s new place. Too reminiscent were the sights and sounds and especially smells of the places my mother-in-law resided as my wife engaged in the accompany of her mother’s dementia journey.
My mother-in-law’s story is not mine to retell. One may witness it, but only the accompany can retell it. What I could tell you is my mother-in-law liked my ties and called them shiny. I made it a point to always be in a suit and tie when I visited. “I’m glad you’re here,” she told me once. “You’re going to take me out of here.” She took out a blouse to fold for packing. Folded and unfolded. For the length of my visit, folding and unfolding. After I put her blouse back on a hangar, she stroked my tie as I kissed her goodbye. “Shiny,” she said.
And, as with your story, I am leaving out tons of detail, points between major points. They define our character, illuminate our stressors, and reveal the state of the dynamic between siblings and spouses. We may tell our stories, but it is what we don’t tell that is truly revelatory.
Suffice it that my brother found, after ten visits, a place for my mother to live out her life. Now came the hard part: the telling, the planning, and the moving,
My mother was weary of the constant arrival and departure of caregivers. It made her dizzy thinking of whose name or what quirk or what offense (real or imagined, I never decided, though I chose not to humiliate my mother with a poised array of nanny cams). We talked about a new place, and her doctor stressed the importance of the new place, so she was aware of the concept. Just not the action plan. Her children plotted and planned.
However one plans to move a woman out of the house she lived in for a half-century into a memory care facility, however well thought out and heartfully managed, you will be wrong. Our plan relied on deceit, timing, strength, and above all, a bottling of emotions. It began with the suggestion my mother go down the block to spend the morning with my aunt. I would pick her up for lunch later at the “first” site she would visit. With speed and fury, my wife and sister-in-law examined all the contents of my mother’s bedroom, determining which goes, which stays, which gets her name written in permanent Sharpie along the edges. With military timing, my wife and sister-in-law finished going over the items in time for movers to come and move the selected contents of clothes and furniture from my mother’s bedroom. My brother and his wife went with the movers to the facility. With photographs taken to help, they recreated my mother’s bedroom, down to the photographs that were wedged on the side of the dresser mirror and hung on the walls.
My wife and I picked up my mother and talked up and about the place we were “visiting.” Lunch was served, the staff warm and respectful. A tour of the place led to a “sample room,” her room, the room where she would spend her last 25 months. She sat on her bed, looked around the room at the pictures my brother approximated onto the walls. It was her bedroom, but the light was different, as was the smell. “This is the place, mom. You’re going to try this out for a bit and see how you like it.” She settled her look on her two boys. “You two are clever” was all she said about it. If there was to be outrage, if there was to be furor, it all was funneled through the simple grace of that comment. She was going to spend her nights here. I drove home with the image of my frowning father in my head, saying to me “This is what you do to my wife?” “Yes, Dad,” I said with shame in the dark, “this is what we did.”
To be continued… Tune in Tuesday, November 26th for the next installment.