Grief is extra-complicated when the person you’re losing is still alive.
I am watching my mother’s brain die right before my eyes. During a recent visit, she said to me, “Please, Rosemarie, can you help me remember who my children are?” I maintained my composure and said, “Of course: There’s Betty Ann, Tommy, Carl, and me.” She looked deep into my eyes and tried to repeat the names but couldn’t. So we did it again and again, until her frustration and agitation seemed to fade. She said to me, “I’m so upset that I can’t remember things. How many children do I have, six?” I said, “You have four.” And then we repeated their names — yet again — until she again felt soothed.
That same day, she asked me over and over how my family was doing: where my kids lived and, again, how they were doing. A moment later, she turned to ask me, “Do you have children?” I started to cry behind my sunglasses, grateful that she couldn’t tell.
One in three seniors die with dementia. That means that millions of us have seen, or will see, our parents — our first teachers, our trusted confidantes — look at us with fear in their eyes, pleading for help as they attempt to patch their world together.
This heartbreaking process sometimes sends me into a rage, but for now, I just feel so very sad. The staff at her assisted-living home told us in summer 2020, in the middle of the pandemic, that it was time to put her into the memory care unit, which to me was a fancy name for a nursing home. My sister and I put up a robust fight, worried that if we put her there, any remaining semblance of her mind would wither away. But it was our only option.
I never wanted my mother to live in a nursing home, and I can tell you with certainty that she never wanted to be there, either. She’d experienced all this with her mother, and had said, “I hope I die before this happens to me.” She was in her fifties back then, and I was only seventeen, but I remember feeling the same. I didn’t want this to happen to my grandmother, my mother, or myself for that matter, should the cards be dealt in the same way.
Once, someone who lost her mother at an early age said to me, rather scornfully, “At least you still have your mother.” While that’s technically true, my mother bears no resemblance to the woman who raised me. Before dementia, she was the first person I called to share exciting news with — the first person I reached out to, confided in, and whose advice I sought when I was struggling. After each of my two miscarriages, my mom came straight to my house to wipe my tears; she showed me how to take care of an infant when my children were born; and when I was diagnosed with lung cancer in 2008, she dropped everything to take care of me and my young family.
So after many conflicting thoughts and deliberations in my head, I conferred with my sister, and we agreed that my mother needed to transition into memory care. We hadn’t believed or accepted that my mom required that level of care, until the summer of 2020. That was when one aide came to my mother’s room at the assisted-living home and found her sitting at her kitchen table, eating coffee grinds.
I’m plagued by so much unresolved grief, both from observing the loss of my mother’s mind and spirit, and from the loss of our relationship. She is slowly slipping away, and there’s nothing we can do to stop it.
I also feel guilt knowing how much she feared living in a “home,” and the fact that I ultimately put her in one. It was done for the right reason, but it’s still incredibly painful. Each time I visit her, and walk her back from the lobby into the locked-down “memory care” wing, I’m wracked with anxiety. In fact, I’ve come to grips with the fact that I’m not strong enough to leave her there and walk away, so my husband brings her back and waits for the buzzer to let her into where the other residents are gathered. It’s almost like ending a visit with someone who’s incarcerated.
At a recent visit, I saw yet another fragment of her memory slip away. She asked all the typical repeating questions about my children, our family. But then she asked me something I never imagined hearing: “Are you my daughter?” I took a long deep breath, and surprised myself by holding back tears. I explained that I’m her youngest daughter, and repeated the names of her other children — Betty Ann, Tommy, and Carl — until she was calm. Afterward, my husband and I walked back to our car where I cried deep, gut-wrenching sobs — then prepared myself for our next visit, wondering what part of her might slip away next.
Rosie Mankes is the author of a memoir entitled Find Your Joy and Run With It, about how she overcame an avalanche of ordeals within a year’s time, transforming tragedy into love and happiness while sharing the tools she used to do so with her readers. Rosie is also a life coach and speaker.
