My Mom’s Last Good Fight

Jane Roberts around 1999
Jane Roberts around 1999
My mom had always been an activist and forever relished a “good fight” for the things she believed in, but found herself, at age 76 after moving out to Los Angeles to live with us, diagnosed with dementia and a final seven-year struggle with the gradual loss of memories and the general unraveling of her once great mind. My mom was a fighter to the end, but with the continuing loss of her faculties, that fight got more and more quixotic and convoluted, and difficult for those of us around her. For me experiencing this with her, every day I grieved the loss of one more piece of the bigger-than-life person she had been.

As I indicated in another vignette (The “D” Word), a few years after my dad’s death in 1984, my mom was diagnosed with an atrial fibrillation that was causing her heart to not pump blood properly. For years it was treatable, but finally not, and the oxygen flow to her brain became permanently compromised, leading to the dementia. To my mom and the intellectual powerhouse she had once been, her diagnosis carried with it such profound fear that she could only deal with it by denial. When I tried to discuss the issue further on the way home from the doctor’s, my mom glared at me and told me candidly that she could not deal with the thought of “losing her mind” and so she did not want to talk about it again.

As I said my mom was a fighter, and her refusal to talk about her dementia was only the beginning of her dogged campaign to recover her mind. I agreed to mostly honor that prohibition, except when she would occasionally look at me with a pained face and pointedly ask, “What is wrong with me, Coop?” I would say something like, “You are wrestling with dementia, mom. It is getting hard for you to remember things.” She would think about that a moment and become more quiet and say something to the affect of, “I don’t want to talk about it anymore, and I don’t want you to talk about it either!”

So life went on. We introduced my mom to the large contingent of people her age in our otherwise small Unitarian-Universalist congregation. They graciously accepted her into their circles, interacting with her at the Sunday services and inviting her over for various lunches and coffees. I was initially hoping my gregarious mother would take advantage and develop a circle of friends in her new world. But instead of following up on the offers of connection, she holed up in her little guesthouse and hyper-focused on rearranging her furniture and making everything perfect, saying she had to get the place “in shape” before she could invite new friends over. I accepted this as part of her fight with the dementia and the need with her diminished capacity to acclimate to a very different world than she had left her little one-main-drag New Hampshire town. In the way too big city she was now a resident of, she had to build her safe little nest to inhabit.

This really hit home to me when I realized that she was writing all the important information about names, addresses and phone numbers of friends, plus notices and news clippings she had kept from key moments in her life, and taping them up to the walls of her bedroom. Letters from good friends, clippings of theater performances my brother or I had done in our youth, letters to the editor she had written in support of the ERA or women’s reproductive rights adorned her wall. When she woke up in her bedroom each morning, the walls would remind her of who she was.

Her ability to make new friends was severely compromised by her growing short-term memory loss and her inability to remember the names of the people she met. Each Sunday at church she would joyfully greet the people she had met in previous weeks as if she was meeting them for the first time. She was charming enough and her peers in the congregation caring enough that they put up with this and developed relationships with her as best they could. Sally’s folks and their extended family also lovingly took my mom into their circle and accepted her diminished capacity.

It still pained me that all these people did not know her in her prime, as a powerful bigger-than-life personality, but only as a sort of “Mr. Magoo” type character. I would find myself repeatedly recounting to friends and family, when in conversation with me and my mom, of her accomplishments in the women’s movement, the fight against the war in Viet Nam, and her work in Democratic Party politics.

Things became more difficult when, after a train journey to New York accompanied by her sixteen-year-old grandson Eric, she got it into her head that the problems she was having were because she had moved to Los Angeles. She had not had these problems before the move, the solution to recovering her mind was returning east. She also decided that she wanted to live again in the house in her hometown of Binghamton New York and refused to accept the fact that her brother had had to sell it twenty years earlier when their father had had a stroke and needed to live in a nursing home. So my mom began a multi-year campaign that she doggedly stuck to trying to convince me or one of her grandkids to get in her Volvo with her and drive her “back east” to recover what she had lost.

I had the same frustrating discussion about this over and over with her since she never remembered the result of the previous one. But my heart was captured by her laser-like focus on the one path she perceived to wellness, and eventually, I felt compelled to honor her quixotic quest and to at least explore the possibility of her moving “back east”. My brother and I discussed it, and quickly ruled out her returning to Wolfeboro, since her sister (my aunt) and brother-in-law (my uncle) had now moved away and there was no other family in that town to look after her. The only possibility was Binghamton New York, where she had lived as a teenager and her parents had continued to live until their deaths, and her brother continued to live.

So my brother and I accompanied her on a trip to Binghamton, to see if she connected to her old hometown, to see if there was an assisted living facility that might work for her there, and to see if her brother (my uncle, two years younger than my mom) was in any condition himself to keep an eye on her. But though the assisted living facilities we looked at seemed pretty good, it was quickly clear that the cost would be great and it was not going to work without having either my brother or I in the same town as her no matter how good the facility. We stayed at her brother’s house and soon realized that he was suffering from the beginnings of dementia as well.

My mom did recognize her old neighborhood when we all ventured there, but unfortunately fixated on returning to her parent’s old house, which had been sold many years earlier. In her diminished mental state, she refused to accept this fact, and thought it was her brother who was preventing her from living in their old house, and until nearly the end of her life demanded to all who would listen that she be allowed to go back there and live, a place where she would be well again and return to the memories of her youth (the only memories she still had at this point). But in the real world it was not to be.

With the scenario of the continuing deterioration of her mind painted out to me (but no longer to her) by her doctor, and her impossible continuing quest to recover it, I had to come to grips with the journey I ahead of me I was fated to accompany her on. It struck me one day, as tears filled my eyes listening to the song “Changes” by folk singer Phil Ochs, that every day I was saying goodbye to one more piece of my mom and grieving its loss. And at some point, before death (hopefully mercifully) ended her “run” in this incarnation completely, I might lose every last piece of her except for her recognizable face.

But I was committed to this last journey with her, remembering how my brother Peter had made a journey nearly two decades earlier with my dad when he had pancreatic cancer (see “Saying Goodbye to Dad”). It was my turn to honor the parents who had given me so much, who bravely ignored the conventional wisdom of the culture to raise me as they intuitively knew they should.

(See the last installment)

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