Alzheimer’s, my mother and my future novels

This year has been one of “lasts” regarding my mother. I drove the seven hours from Rochester, NY to Northwest OH for Christmas, because I thought it would probably be the last Christmas she knew who I was. I made the same trip this Memorial Day weekend, because she has recently moved out of a nursing home and into a group home with ten other residents. These homes, called green homes are set up to be far less institutional than nursing homes, and allow family members to spend the nights, if they choose, so I thought I would take advantage of her new situation and stay with her for the weekend so we could have intensive time together.

I am too tired to come up with come up with something less clichéd than “I experienced a mixture of emotions.” The staff at my mother’s home were truly invested in her happiness and all talked about how much my mother had improved mentally and physically after the move. She rarely uses her wheelchair anymore, walking with the aid of staff around the house. I saw that she was less anxious, less concerned that she was doing something wrong than she had been at her previous nursing home. And for most of the time, when she was not sure I was her oldest daughter, she knew I was one of her children, and when she was not sure I was one of her children, she knew I was someone she loved.

Her grandfather and both of her parents had Alzheimer’s disease and for decades she lived in terror that one day she would have it too. Because one of the residents in the home had died this weekend, staff was short-handed, so I helped one of the male “shabahzin” as they are called in the green house lingo, toilet her and get her ready for bed one evening. I thought as I did so, that something like this was exactly what she never wanted to have happen: that one of her children would be involved in helping her this way—and she would have been doubly appalled to have a male staff person, even one so gentle and professional—handling her intimate care. But I guess one of the blessings of the disease that has stolen her sharp, funny, intellect is that she has reached the tipping point and is now past caring.

“Valiant” is also a cliché when paired with “effort”, but that pairing really is the best descriptor for the conversations she tried to have with me. I saw how exhausting it was for her to find the right words, to find the ends of sentences she began, to hope I knew what she meant when she said things like, “I believe we will need to hop on over the lettuce keeper.” As I noted above, she overall seemed less anxious than in her previous facility, and the staff told me she is generally fairly relaxed, but the presence of my sister and me I think triggered in her some sense of duties she had not accomplished. She kept saying she was not wearing her watch and she was afraid of missing meetings and buses. I had to keep telling her she was retired, and she wasn’t missing anything, knowing that I was casting some sort of light that she was groping toward, wanting to grasp but never quite touching, and that the effort was causing her to feel that she had failed at something, but she wasn’t sure what that something was. It was my job to tell her that she had already made it. We were together in the Light.

When I left to drive back to Rochester on Memorial Day, I told my mother, “I will miss you.” As we embraced, she said, “God bless you.” The simple exchange felt like liturgy.

This Alzheimer’s heritage is a sobering one for me, at age 51. In 1993, I decided to become a human rights advocate with Christian Peacemaker Teams instead of pursuing an MFA in writing. I usually do not regret this decision. The work has been meaningful and brought dozens of interesting and dear people into my life. It has also garnered me writing assignments from publications I would not have received otherwise and provided material for my novel manuscripts. But as I struggle with social media and watch young people in their twenties and thirties with MFAs navigating more knowledgeably through the publishing world, I feel wistful, at times. My dream as a young person was always to devote most of my time to writing novels. None of the three I’ve written have been conventionally published and I’ve always had to take time off from CPT to finish the ones I have written. And now when I look at the future, I wonder how many years of novel writing my brain has left in it: Twenty? Fifteen? Thirty?

One thing I have decided to do is not live in terror of debilitation. Alzheimer’s does not run in my father’s side of the family. Terry Pratchett actually wrote two of his novels after an early onset Alzheimer’s diagnosis. Most importantly though, if Alzheimer’s happens, it happens. Living in terror will not make it go away. So I will not let the possibility of dementia paralyze me in the present. I will keep writing as long as the books keep coming to me, and they show no sign of stopping.

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