I am uncharacteristically brief as I state my prayer request as our women’s Bible study begins this morning on Zoom! My visit with my aunt yesterday upset both of us, I say. “I don’t know if I should visit as often as I do.”
Lisa looks at me. Well, not exactly: She stares at my image on the computer screen. “There are five stages of grief,” she says gently; eventually, I will get to the fifth—and last—stage: acceptance. I shake my head.
Aunt Jo stepped onboard the dementia rollercoaster in May 2014, when she moved into assisted living, and then into the nursing home in 2018. Since 2014, I have experienced each of the five stages several times, and out of order, as her condition shifts and changes. After yesterday’s visit, I am back to Stage 1: denial.
“Do I live here?” Aunt Jo asked as soon as I walked into her room at the nursing home. She leans back in her wheelchair and studies my face as I gaze around the room.
Room 221-A is not a room at all, but an open alcove located next to the bathroom and across from the nurse’s station on the second floor. Room 221-B was also available, but the bedroom had a door, and after repeated falls at the assisted living facility, Liz and I decided the open alcove was the safer choice.
My aunt’s green eyes flicker as she repeats the question again. Those eyes used to flash when I was a child, the pupils growing larger until they extracted the answer to her questions.
In early December, the nurse practitioner with my aunt’s Medigap provider recommended that Aunt Jo receive hospice care. The word alarmed me and my sister. Death does not have to be imminent for a loved one to receive hospice, we learned. Aunt Jo’s weight loss qualified her.
By mid-November, my aunt was eating only a fraction of her meals and losing a pound a week again after stopping Megace. For three months, the wonder drug had helped her gain a pound a week. (Three months is the maximum dosing schedule, because of the drug’s serious side effects.)
My aunt is silent for a moment, and then asks again, “Do I live here?” She studies my face carefully as she watches me repeat her own familiar words. “Yes,” I say, “it is a nice room, isn’t it?” A smile spreads slowly across her face. I relax and lean back in my grandfather’s chair.
“No, it isn’t,” she says suddenly. She kicks the small dresser with the toe of the black suede booties I bought her the winter before she had to move out of the house. “It isn’t our house.”
She glances over at the twin-sized hospital bed in the center of the room and wrinkles her nose. “That’s not my bed,” she says. “That bed is too small— “it must be yours.” “No, it isn’t,” I say. “I have a bigger bed in my apartment.” “You don’t have an apartment,” she says, and laughs. “You live in the house, on the third floor.” She means, I realize, the bedroom where I slept before I left for college. I catch my breath. Her mind has strayed far from 2021, back to happier days.
I open my mouth to correct her, then shut it, recalling the social worker’s warning: You must remain calm with dementia patients. Do not argue.
My aunt looks around the room. “I don’t want to stay here,” she announces. “I want to go home with you.” She grasps the arms of her wheelchair and tries to push herself toward the door.
“I have only one bedroom at my place,” I say, “and only one bed.” I reach for the handles on the back of her wheelchair, grateful that she cannot see the tears sliding down my face. “I know,” she says, “I know, but I want to go home with you.”
As your loved one declines, do you experience repetitive stages of grief as their condition changes? What have you found helpful?