ESSAY | MENTAL HEALTH
Grieving the Living
The first time was maybe six years ago at a family gathering. She called my sister the wrong name — and not my name, either. A completely random one, with no context at all. She caught herself and made a joke. We were grateful to wave away the awkward moment and move on to other topics.
Then, nearly five years ago, I gave her a call on my way home from dinner with a friend, just to check in on her. She asked where I’d been, who I’d had dinner with, and whether we’d had a good time. I’d answered each in turn. Then, with no other conversation in between, she asked me where I’d been, who I had been there with, and whether we’d had a good time.
My answers were far more hesitant. This time, she didn’t notice. She didn’t say, “oops, I just asked that!” and laugh, like anyone would when they realize they’re conversing on autopilot. She was waiting to hear my answers.
Did we really just have the same conversation twice?
This is how dementia entered my world. It started slowly, seeping in from the corners where you could miss it. Where you could excuse it by saying, “Oh, she’s just getting older.” Then it sped up and gathered momentum, becoming a monster and eventually tearing down everything in its path.
My grandmother was outgoing, boisterous and sarcastic, funny and sociable and melodramatic, her sense of humor a bit biting at times. She had a tendency toward white lies when they worked to her advantage. When I was a kid, she once opened a pack of Chips Ahoy and was royally pissed to discover that the cookies had shrunk while the price remained the same. She called the number on the back and told customer service that she had a room of sobbing Girl Scouts who were devastated by the cookies. They sent her some free boxes. You could say she had a certain flair.
She grew up in the Bronx, the daughter of Italian immigrants in a family of eight children. There had been more children, but some had died in infancy, including two sets of twins. Her own mother passed away when my grandmother was just a pre-teen.
New York is where she met my grandfather, also the son of Italian immigrants and from a large family. They married when she was just nineteen, and in her wedding photo, she was glamorous in that classic 1950s way.
My grandfather was a military man, and my mom’s family lived all over during her childhood, including even in Italy for three years in the early 1960s. My grandmother loved to tell the story of her trip to Italy, all alone with two young daughters in tow, and how she couldn’t find my grandfather when she arrived at the airport.
In their retirement years, she and my grandfather spent a summer driving cross country, touring the US. They saw everything worth seeing. And right up until my grandfather passed away in early 2019, they still argued about the order they had visited certain states. That was their relationship: endless bickering, almost always in good fun. My grandfather always took care of her — so much so that he never once breathed a word about her memory problems. But I have to assume he knew.
She’s alive today, but she isn’t really my grandmother anymore. The last few years, with my grandfather’s death and the endless isolation of the pandemic, have been hard. Her illness accelerated with a speed that frightened us all.
First, she got angry. Fearfully, scathingly angry. She seethed with rage for months on end; for what felt like forever. As often happens, she turned the full force of her anger on the person closest to her. As she grew nastier, her behavior became more unpredictable. I suspect she began to hallucinate; at the very least, she was unable to distinguish dreams from reality.
She became intensely paranoid and was convinced that everyone, including her family, was trying to rob her. She would forget to the lock the door and then convince herself that someone had broken in, or leave a dish in the sink and stress that someone had been eating her food. She started to curse terribly. She’s always had a bit of a mouth, but it was more comical than cruel. That changed.
We made the difficult decision to put her in a nursing home during the pandemic. My mom really struggled with this (is still struggling now, to be honest). It’s something that just isn’t done in our family to begin with, and COVID added another layer of guilt and complexity.
I advocated hard for the decision. She had reached the point of being a danger to herself, drifting aimlessly around an empty house that she refused to leave. My brother shut off the gas to her stove, and my uncle let her car lapse with a broken something or other, to stop her from driving off on her own. She forgot to eat; had no understanding of her medications. There was nothing to stop her from wandering out the front door and into the street, except her own painful feet. She was falling almost daily in those last weeks at home.
She didn’t want to leave her home, so we tried home care first. Visiting caregivers just weren’t enough coverage. We briefly tried twenty-four hour coverage, with a live-in caregiver. She told us my grandmother was already past her level of ability. The time had come.
My mom and uncle brought my grandmother to the home. I can’t imagine how hard that must have been. Once they left, I called to try and keep her occupied for a bit. She was completely hysterical. She ranted that she had been abandoned, that she was trapped, that she would die there, that she would jump out the window and kill herself, that she would call the police. It took me over an hour to talk her down to a state that seemed safe.
She’s been there almost six months now. We haven’t been allowed to visit. Aside from a few video calls and some texted pictures from the nurses, we haven’t seen her since early fall. And then the worst happened: she caught COVID. I was convinced that I’d pushed for the move that would kill her, but she’s strong and survived with only a mild sore throat. I could say she was lucky; I guess it depends on how you look at it.
She can’t remember how to make calls, but she has a phone that she can answer, so I call her a few times a week. She still remembers me, though she will forget who I am as we talk, mixing me up with others. We have the same conversations over and over: about the weather, the pond outside her window, that no one visits. She asks how my kids are (I only have one).
She talks a lot about kids, as if there are children there with her. My mom thinks she’s remembering my sister, brother and me, when we were young. I think she’s talking about my mom, aunt and uncle. The decades are melting faster; she talks about siblings long gone as if she saw them that day. She once referred to my grandfather by his birth name rather than his nickname; something I’ve never, ever heard her do.
The red hot rage eventually passed, but a large part of her went with it. She is now subdued and sleepy, mostly lost, always in a fog. Her eyes have dimmed. She’s been drifting into “word salad” territory and says bizarre things, like that she walked across the highway to visit her old house or that the toy dementia dog my mom sent her is growing. It’s difficult for me to follow a line of thought or respond with much more than, “uh-huh” or “okay”. She’s depressed a lot, and talks about her old home and missing us, and I sometimes wonder if it might be more compassionate for her to forget faster now.
She’ll forget me eventually, maybe sooner than not, and I’m as prepared as I can be. The long, slow slog of dementia gives you time to think, to grieve. My grandmother will remember my mom longer than she’ll remember me, and I’m glad. I don’t know if my mom will be able to face that day. I think she’s still hoping this all isn’t real, and she won’t let herself grieve the living.