AARP Eye Center
My mother had been thinking about her own end of life for as long as I can remember. She’d nursed two parents through long, agonizing final chapters, one with cancer and the other with Parkinson’s. Being such a dutiful caregiver forged a determination in her not to end up like her parents. She was almost militant about “not being a burden” to her three girls at the end.
Seventeen years ago, just a month before my own husband was critically injured by a roadside bomb in Iraq, my parents moved back to the East Coast. My father’s Alzheimer’s was progressing, and they wanted to be closer to their three daughters, one of whom was living near Boston. They chose an apartment in the independent part of a senior living facility in Concord, Massachusetts, that could handle the progression of my father’s disease. It was 20 minutes from the youngest daughter.
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Over the ensuing years, they were thoughtful about all the necessary decisions and documents, about expressing their wishes and more. By the end of her life, my mother had intentionally pared down many of her physical possessions, leaving very little for us to sort through or divide. She had been mothering us even then.
We discovered a list of hymns and favorite songs, treasured poems and writings that could be used for a service, although she claimed most of her friends were gone. “Just scatter my ashes with your Dad,” she said. True to form, she’d done the research on the cheapest crematorium when he had died in 2015, and the information was all there in her files, waiting for us after her death.
The impact of COVID isolation
There had been signs throughout the past year of her beginning to slip. She was 89 and had begun to comment on her flickering memory and how the COVID lockdown and lack of contact with people had slowed her down considerably. She complained of incontinence and other physical indignities. She was fearful of falling and ending up in a hospital where she would lose her autonomy to make decisions.
By this past December she was spending much of the day in her chair, tiny paper reminders scattered around the apartment in her small, cramped handwriting. “Get up; Lee is coming today!” was one I found by the door of her bedroom. This was always who my mother was, an inveterate list maker, but the notes seemed less casual reminders and more about the fear of forgetting entirely.
Did we miss red flags we should have seen? She was so competent during my visits at hiding things. We had wonderful conversations that covered books, memories and philosophy or history. Was she taking her medication? Was she eating? She had stopped using the stove and then the microwave. We would learn later that she had largely stopped eating, a willful act. But was it also because she was no longer able to organize herself around the daily task of feeding herself? She’d suffered from tinnitus for years and could no longer enjoy the music she loved. Now her beloved books sat largely untouched; reading had become difficult. Still, this was so different from the slow dance of losing a parent to Alzheimer’s. This felt rapid and confusing, as if we were barely staying one step ahead of her descent.