Last week Patricia asked me a question at the monthly support group meeting. I was not clear initially who she was trying to understand – me the caregiver or my mother, the loved one with Alzheimer’s disease. She directed the question to me specifically because I have already experienced these stages with my mother. I fully comprehend that out of sight is truly out of mind.
Patricia leaned over while there were several side discussions going on and asked me quietly, “How does it feel when you leave your mother in a facility?” She emphasized the word “leave” when she posed the question. I thought back a few years in order to respond.
Anticipating moving her mother
Patricia attends the meetings regularly and has her mother living with her during the early stages of dementia. She is a middle aged woman with grown children, a full-time solo caregiver, and employed. She begins her day well before dawn to get herself and her mother dressed and fed before she leaves for work. Patricia sleeps little because her mother keeps her up at night, sometimes even wandering outside the home. She cannot sustain this situation and anticipates moving her mother.
Initially I moved my parents to a facility where they had each other, despite living on different floors. My father cared for my mother previously but his health declined to the point where he couldn’t care for mom. My parents were isolated and struggled when they lived in their single family home. So I felt relieved when they were safe and had everything they needed in a caring environment.
When my parents were together, I was sad about their declining conditions, particularly for my mother’s declining mental capabilities. Despite those, she felt happy and was physically capable and still active, walking all day. My mother no longer remembered us so all her separation anxieties dissipated. She didn’t fuss or fret when anyone left her.
To contrast her emotions, I always struggled when I left my mother. All the years that I traveled back and forth, I kissed her good bye in the memory unit and went to the airport. I always got a window seat so no one would see the tears rolling down my face during the flight. I hurt terribly leaving her in the care of someone else, never knowing what her days were like or what she was doing.
How I left the memory unit
When I responded to Patricia’s question, I told the story of how I would leave the ALF memory unit when I visited mom. I still chuckle about it. The door to the memory unit opened to an area where the residents gathered before meals and for activities. There was a large supporting column where the hallways connected near the door. When my mother walked her usual route through the hallways, she walked by the column. We would walk the same route together when I visited. So when I would leave, I would let her walk ahead of me past the column. Then I would duck around the backside and hide from her view. Occasionally mom looked back. She continued walking by herself as though I had never been there. I watched her, but out of sight is truly out of mind. Then I exited through the door, out of her world.
My mother never feels a sense of loss when I leave. I do though. I still hurt sometimes because she doesn’t remember me or know that I was just there. An Alzheimer’s patient lives entirely in what he or she sees in the moment. I know that she loves having me in her world while I’m there. When I sit with my arm around her, she gets as close as possible. But once I duck out of her sight, I don’t exist to her. She does not miss me. So truly the words of Glen Campbell’s song “I’m Not Gonna Miss You” resonate so much. To someone suffering from dementia, out of sight is truly out of mind.
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