My 88-year-old mother, who has ASD, was recently diagnosed with dementia. When a nurse called to insist – calmly and steadfastly – that she be tested for dementia, I resisted. My mother has a lot of deficits, but her memory has always been her superpower. Surely it could not be subject to decay. But it was.
Last month, my sister and I moved her from her room in an assisted-living center (ironically named Sunrise rather than Sunset) up to the locked dementia floor (where she is now subject to a “reminiscence fee”). She has lived in Sunrise for 6 years and always referred to the “the fourth floor” with contempt (“Oh! She should be on the fourth floor!” she’d say about any confused woman she met in the dining room). And now she was joining the people she’d dismissed as unfit for dining room association.
Until last month, I hadn’t seen my mother in a couple of years. A year ago she stopped calling me, and then I stopped calling her. That decision to let communication go was complicated. I felt guilty, I still thought about talking to her, but I appreciated the break from her non-stop self-absorption. And I wondered – well, brooded – about how much her cessation in calls was a reminder that she’d never cared much about me. So, yes, I let resentment and hurt play a role in my passive resistance. I didn’t act. I wanted to forget about the unrelenting decades of her disinterest until she remembered me when she needed me to supply something.
I told myself I was ready to walk away from her after a lifetime of demands for service. The relationship with my mother has always been limited to meeting her needs. As my sister once said, “Nothing is too much trouble for you. Everything is too much trouble for her.” Our relationship is exhausting and numbing, yet I had always generally complied. I believe I am wired to do so by a complex mix of nature plus grooming and hope. Maybe hope isn’t the right word. Maybe it’s a bottomless longing for love from the first person who is supposed to love me, just as I am supposed to love her.
Demanding service without any return of interest or love is a kind of abuse. But like so many people who are groomed to accept abuse from someone close to them, I responded to my conditioning by serving her – subconsciously believing that my usefulness would some day magically deliver the love I never got. I served her despite a lifetime of evidence that she will never love me.
Because of the inescapable proof of the fragility of her attachment, when I made my first appearance in her room when I went to Atlanta to help move her, I was prepared for her either not to recognize me or to show little interest that I was there (the latter is what happened the last time I visited, back before dementia had eaten its way into her already compromised brain).
When my sister and I and the director of the dementia floor arrived at her door, my mother looked at my sister and asked, “Oh, who have you brought with you?” Anne had to tell her twice who I was, and then she turned to the staff member with us – without looking at me – and announced, “This is daughter 1 and daughter 2.”
Later, as my mother slumped on her bed while Anne and I started packing up her things for the irreversible move, she brightened with recognition, “Oh!” she said to me, “You used to have blond hair!” I have never had blond hair, not even as a toddler. But she was trying, I think, to understand why she hadn’t recognized me. I’d rather not think that she still wasn’t sure who I was.
The transfer between floors took so many trips I still remember the access code: 2587#. For three days, Anne and I packed and moved and sorted through the amazing volume of old letters and photos and duplicates of items she had misplaced or forgotten. We found eleven grabber-reachers under her bed and recliner. There were more than half a dozen partially used packets of over-the-counter probiotic pills stuffed in various drawers. And there were stacks of memorabilia, some older than I am.
My mother’s drawers were stuffed with Christmas cards and photos of people we didn’t know, retained across our mother’s moves from St Louis to Atlanta and from her Atlanta condo to assisted living. She kept a 1950s Christmas card from Herb and Kay Hamilton –people I have never heard her mention – which featured black-and-white portraits of their young daughters Eileen and Leslie, gazing through cat-eye glasses under the shortest bangs possible into a future out of sight of the lens.
I can’t answer why this card and all the other papers are so important to my mother when her own children are not. I admit this hurts me, even after all these years of reminders of what matters to her, which does not include me or my siblings or our children. Her treasures are her memories, and those memories are always focused on herself as she faltered through a life in which she didn’t know how to connect with people, even when she wanted to.
Every night of that week back in Atlanta, my sister and I sat in Anne’s living room and went through the envelopes of aged letters and photos. We’d thought we’d culled these artifacts in previous moves, but there was still so much that survived previous purges. The trove included mundane letters from her brother-in-law to his parents when he was away at college nearly 70 years ago. Who knows how she got these and why she kept them. She was never close to this brother-in-law or to her in-laws.
Other letters included a report to her mother that I wasn’t a pretty baby and that my sister was a “husky” child. My brother Jim – the child she considered most like herself – was lauded as so clever and so cute. Stories about him dominated all letters throughout our childhoods. I tell myself her dismissal of the rest of us and her outsized regard for my brother came from him thinking about the world the way she did.
My sister and I never understood her disappointment in us that we thought she was joking when she presented her theories about the world. We laughed when she explained her philosophy of the good letters to have in one’s name (L, M ,R, E and A according to my mother) and when she asked if we had a favorite card (hers was the 4 of spades). Our brother, however, got it. He had a favorite card too.
That week I also read about my unstable teen-aged years and my parents’ belief that all my mistakes and thrashing for direction were my fault. They were sure there was nothing they could do about this daughter who floated away erratically like a carelessly released balloon on a windy day.
Back home, I am still processing my convoluted feelings about what may be the last time I see my mother. It is certainly past the last time I will see her when there is even a tiny hope that she will reveal love and concern for me. I need to accept that it is up to me to move past grief and longing and resentment. She can’t help me.
I grieve not so much that the mother I actually had is gone, but that the hope for a mother I desperately wanted is gone. I know it’s selfish that I am not lamenting what she has lost. I know I should mourn for her too. But one of the things I am sorry she has lost is the chance to love me – or anyone else – the way I love my children. Essential chances for both of us are lost forever.
For now, the crumbling of my mother’s memory still surprises me. As Anne and I came back and forth into her new room with boxes and furniture and clothes, she kept telling us she’s 95. We’d remind her that she’s 88. “Oh, and I’ll be 99 next month!” she’d reply, pleased to understand this. And then a few minutes later we’d go back over this information. My mother used to remember what she was wearing when she was in kindergarten on a specific day in October.
She asked us for the name of “the youngest,” meaning my brother Dan. Still, when we got her talking about the past, she remembered a lot (though not the identity of Herb, Kay, Eileen and Leslie Hamilton of the dreamy Christmas card).
Midway through the first day of the move, I found her on her bed, looking at the guest book from her father’s funeral. She stopped wearing reading glasses a while ago, so I don’t think she could decipher the scribbled signatures, but I made sure to leave that book with her as we pared down her belongings. I guess it’s a comfort to her or it acts as a transport to a time when she could remember everything.
The second morning of the move her first words to me were, “I almost died last night.” She has been predicting her imminent death for three years now, though she has no serious medical conditions. She has always wrestled with so much anxiety and so many fears, and her family has never appreciated their dominion over her. Maybe from the cocoon of her current life, death is all that’s left to terrorize her.
My mother has always needed a cocoon. Her childhood was buffeted by doting, upper-class parents. She married young. Though my father came to furiously resent her and the children that tied him down, she never had to take care of herself and provided as little care-taking of others – even her young children – as she could get away with.
Sure, I wish I could sweep away the deep treads of my mother’s emotional neglect. I wish it no longer hurt me that she never loved me. And now I have to accept that there is no longer any chance that a loving mother will finally emerge from behind the impervious shield of her fears and neediness. I know she can’t help being so self-absorbed, but I can’t help being scoured by that.
I can’t say, though, that I cry about her emotional abandonment. My pain is too deep for a purge. I rarely cry, though I understand that I have always had trouble with emotional regulation. The lack of crying does not mean I am unemotional. Instead, I am too easily excited, defensive and offended. Admitting my deep wounds is even harder than defending myself against them.
As I look back at images of my diminished mother lying on her bed, only half aware and half of who she was, I wonder who this woman really is. Did I ever know her? I’ve never understood her attachment to her fears and anxieties, no matter what her entrenchment cost anyone else. I’ve never understood many of her instincts and decisions. I’ve never understood how a woman who wanted to have and to love children simply couldn’t do that once we metamorphosed from an idea into actual people with our own needs and interests.
And now she’s gone into her oblivion. Even if there were a reminiscence fee I could pay to bring her back, she would still forget to how to love.