by Beth Whitman
The day had arrived. Mom was going into the Alzheimer’s Care Facility. The van was coming at 11 am, so at 9 I had dressed Mom and transferred her into her wheelchair. She was ready to go. Amy and I wheeled her out into the morning sun in the front yard. Dad joined us, and Peter came from down the road to help out as well. We brought out drinks and snacks and had a little party while we waited for the van.
I was nervous, as was everyone else. But Mom was excited. She was outdoors, happily absorbing the smell of freshly cut grass, waving at the cars going by. It was the first time she’d been outside in almost two months. She was all dressed up. And she was ready to go.
Fact is, Mom had been ready for the past three weeks. She hadn’t been able to stand up, her feet were swollen, she hadn’t been getting dressed any more, and it had become extremely difficult to change her because I’m simply not able to manage her weight by myself. She always wants to go somewhere, but the best she can do after hours of trying is just to slide herself onto the chair next to the bed. Then she won’t move back, so she sleeps all night in the chair or she wets the chair and I have to call someone to help hoist her back into the bed by maneuvering a sheet under her. And all the while she is protesting, “No, no, no, no, no…. NO, NO, NO, NO, NO!!!!” Her protests escalate loudly until we have her settled and all the wet clothes removed.
But then, suddenly calm, she looks up at me. “Thank you,” she smiles.
The day before we were moving her to the facility in Glenridge, I sat next to her on the bed after one of these sessions, and she leaned against me quietly, waving her hand in front of her. “You know . . . you know . . . I’m so . . . I’m so . . . sorry . . . for you . . . and . . . and . . . that other one . . . .” Her hand motioned toward the other room where my father was sitting.
She was apologizing to me for being such a burden! My heart was breaking.
Mom had required 24-hour monitoring for four or five months at this point. Whenever I was not by her side, I would carry a little video monitor, so if she were trying to stand up or move around, I could go to help her. I shared this duty with Amy, her full-time caretaker who lived upstairs — one of us was always watching. For the past couple of months I’ve found it safest to simply sleep next to Mom, so that whenever she would wake in the middle of the night and want to go somewhere, I could coax her back to sleep, stroking her hair or rubbing her back.
About three months before, she and Dad stopped sleeping in the same bed. Dad was exhausted because she would wake up distressed or simply restless, and Dad, raw from not getting any sleep, would irritably demand, “Go back to sleep, Marianne!”
But that wasn’t effective. So I would kick Dad out of the room, have him go sleep in the bed in the living room, and I would lie down next to Mom and gently urge her back to sleep. It became a ritual: Dad and I would wait to see where Mom ended up at the end of the evening, and then we would decide, accordingly, where each of us was going to sleep.
It often felt as though I were taking care of an infant. There were moments of great tenderness, where Mom would gently stroke my hand, and her hand would follow the line of my arm, as if exploring a new world. We had a language, Mom and I, barely intelligible to most, but I knew what she was trying to communicate. Something she was curious about, something she wanted, something that upset her. And, as always, she would look into my eyes and say (though it became increasingly unintelligible): “You’re wonderful.”
But now Mom hadn’t left her room for three weeks. Life was reduced to feeding and cleaning up messes. But it was ten times more difficult than with a baby, because Mom was at least ten times bigger.
No one was happy. It was time.
Beth Whitman lives in Maine and is a member of Belfast Cohousing and Ecovillage, a developing community on the coast of Maine focused on multigenerational living and sustainability.