‘Her eyes stay shut. She doesn’t respond. But nothing feels real until I tell her’: visiting my mother’s care home after a year

Katherine Heiny
·15 min read

In Boolean logic, a syllogism is a valid deductive argument having two premises and a conclusion. (I know this because logic is the only even vaguely mathematical class I ever understood.) For example, apples are fruit; all fruit is delicious. Conclusion: apples are delicious.

Or in my case: I am eager to visit my mother; my mother has advanced dementia. Conclusion: I am eager to visit someone who won’t even know I am there. Is it a logical conclusion? Maybe not. Is it a valid one? Yes.

My mother has Lewy body dementia. In 2009, when she and my father visited me in the Netherlands, she told me that she thought she was experiencing memory loss and was worried. Together, we Googled the symptoms of Alzheimer’s but they didn’t seem to fit: her judgment was sound, she didn’t misplace items, her spontaneity and humour were solidly intact. She just lost her train of thought sometimes. We decided she was suffering from jet lag. And maybe she was. But it continued when she and my father returned home to Michigan. I urged her to see her doctor, and she did.

She called me afterwards and told me that he had asked her to memorise a short list of words, draw a clock, and count backward from 100 by sevens. All of which she had been able to do. (I was extremely impressed by the counting backwards. I myself wouldn’t have been able to get past 93.) This was good news! No cognitive decline! We relaxed.

Lewy body dementia has seven stages, and my mother raced through them like a gifted student not content to plod

And yet things started happening. She left ingredients out of recipes she had cooked for decades. She got lost in the town she’d lived in since 1957. She would also have good days, totally normal days. And then, about a year later, when our entire extended family (parents, children, spouses, grandchildren) were in an ice-cream parlour ordering 17 cones from a harassed teen employee, my mother drew me aside.

“The strangest thing has happened,” she said. “I can’t remember how I got here.”

I felt the air around me shimmer; it was as though we’d entered a new dimension. “Dad drove you,” I said finally. “You came here with Dad.”

She looked relieved. “I knew you’d know the answer,” she said.

We took our cones outside and sat in the shade, eating them, chatting, trading tastes. I wondered how I would survive in this new dimension. How my mother would.

***

She was diagnosed a few months later, aged 77. Her decline was extraordinarily rapid. Lewy body dementia has seven stages, and my mother raced through them all at top speed, like a gifted student not content to plod along with the regular class. She went from mildly confused and forgetful to someone who could not remember even the outlines of her life.

She would sometimes send me emails: “I’ve gotten dressed but I can’t remember what I’m supposed to do next. Do you know?” I would call and try to help her remember (“Have you had breakfast? Are you going for a walk with Dad?”) but it quickly became impossible to have a meaningful phone conversation with her, and she soon forgot how to use email. She grew incontinent; her light steps became a shuffle; she needed constant supervision. Her interactions with almost everyone became a simulation of interaction, a ghostly echo of her former self. “How nice,” she said vaguely, about everything. “How delightful. That sounds like fun.” Only with my father was she able to focus, to respond to his questions. Their love seemed to shine a spotlight on him for her.

Soon she was in a nursing home, and her decline grew even more precipitous. She was confined to a wheelchair and asked continuously where she was. Then she stopped asking. She spoke less and less, and then not at all. For a while she could recognise family members if prompted, then only my father, finally just a vague smile even for him. Then she withdrew even further, like someone stepping ever backward into a dark forest. She began keeping her eyes closed almost all the time, and when she did open them, she stared at the middle distance.

***

I have not seen my mother for a year. Like almost all nursing homes, hers has been closed to visitors since the pandemic began. But now she and all the other residents have been vaccinated and visitors are once again allowed. I make the long drive from Bethesda, Maryland, where I live, to Midland, Michigan, where my mother lives. I can’t wait to see her; I have a year’s worth of things to tell her. My mother and I have always been extremely close. Nothing has ever seemed real to me until I’ve told her about it.

I arrive in Midland late at night. The next morning, I go to my mother’s nursing home. It’s an excellent one. I know my mother would never want to be here, but it’s light and airy and the care is wonderful. The receptionist takes my temperature, and I sign the visitor logbook. Then I walk down the hall to my mother’s room.

My mother is sitting in a recliner, wearing fuchsia sweatpants and an aqua-blue sweatshirt; I buy her clothes and make sure the colours are ones she would choose. Her hair is still mostly brown, with very little grey, although she is 86. Her face is peaceful, relaxed, her eyes closed. If she were to open her eyes and speak to me in her gentle voice, I would be utterly unsurprised – that’s how little she has changed physically.

She doesn't know my father died last November, and I know I won't have the courage to tell her

I cross the room and touch her arm. “Hi, Mom.” I kiss the top of her head. My mother’s hair smells like liquorice no matter what shampoo she uses, or what shampoo is now used on her. I thought the liquorice smell was unique to her until my first child was born; his hair smells the same way. My mother’s eyes stay shut. She doesn’t respond in any way. Her caregivers tell me that she is sometimes more awake and often seems aware of her surroundings, that she still occasionally mumbles, but I have not seen that.

“I’m sorry I haven’t been to see you in so long,” I say. It’s odd to think that my mother doesn’t know about Covid, doesn’t know about Trump, doesn’t know about 2020 even though she lived through it. She doesn’t know that my father died last November, and I already know that I won’t have the courage to tell her. It makes me feel she’s been gone even longer than she has, that our connection was one from a different era, quaint and not so meaningful now.

I take a pint of strawberry ice-cream and a spoon out of my bag. You would think I’d avoid ice-cream, given that day in the ice-cream parlour, but my mother and I share a love of it that is deep and abiding. It will take more than that to put us off. I peel the top off the carton and scoop out a small spoonful. I hold the spoon against my mother’s mouth. She doesn’t open her lips. I bump the spoon gently. She parts her lips and I dab some ice-cream on her tongue. She swallows. I touch the spoon to her lips again and this time she opens her mouth. She has tasted the sweetness. She can still taste the sweetness.

As I feed her, I update her on my family. I tell her that my older son, Angus, who is 20, is taking a gap year and working at a supermarket. I tell her that my younger son, Hector, age 18, is in his senior year and will go to college in the fall. I tell her that my husband, Ian, misses her and sends his love. All these things are sweet and heartfelt and true, but they are not the sort of thing my mother loved to hear, not what she craved.

So I tell her that, just before the pandemic, we went to a lovely senior thesis presentation at Angus’s school and the parents were encouraged to ask questions. One girl’s topic was the Transportation Security Administration and Ian asked her if she knew that TSA really stands for “Tough Shit, Asshole.”

I feed my mother another spoonful of ice-cream. “I told Ian that if we got called in for some sort of conference, he was going alone.”

I tell her that when Angus interviewed at the supermarket, the manager asked him how fast he was on a scale of one to 10, and Angus thought about it for a long time and said maybe a 5.5. I feed my mother another teeny spoonful and say, “On Angus’s very first day of work, a customer asked him where the haemorrhoid cream was. I assume the customer was either a sexual deviant or maybe the manager’s brother, because what are the odds of that just randomly happening on his very first day? But if it was the manager’s brother, I would love to know how that was worked out. Like, is he allowed to do that on everyone’s first day, or do they have a system?”

I tell her that Hector wears glasses now. “His friends say he looks like a single dad with three kids, which I find weirdly specific.”

I eat a spoonful of the ice-cream myself. I am just getting started.

***

I’m back the next day with a knitted blanket for my mother, one as light and delicate as lace, almost. Her eyes are open but, even when I bend down and position myself directly in her line of vision, she doesn’t seem to focus on me.

I straighten up. “This came from my favourite thrift store,” I tell her. “As soon as I saw it, I thought of you.” This is true. The blanket is soft turquoise (a colour she loves) and my mother was a big fan of blankets, of afternoon naps. I place it over her lap and her fingers pull at it gently. Is she exploring the texture or just absently picking at it? I can’t tell.

“Do you remember… ” I start and then pause. Is it cruel to ask someone with dementia to remember? But this memory has occurred to me, and I want to share it. I start over. “Do you remember that time at the thrift store when I forgot my wallet?” I ask her. “And I got all the way to the cash register before I realised, and then I had to call you over to pay? There were two guys behind the counter and one of them said, ‘I don’t think she’s really forgotten her wallet – she just wanted her mom to pay,’ and the other guy said, ‘Ernie, I keep telling you not to read customers’ minds.’ And you and I decided later that we might be in love with them?”

I asked her what she’d remember about me, and she said, ‘How much you love to talk.’ But I only love to talk to those I love. Like her

My mother was known for her incredible warmth, her loving nature, her subtle humour – what so often gets called “niceness” when in fact, it is so much more. It wasn’t only that she was sweet and kind and funny – it was that you could depend on her absolutely to be that way all the time. She was unfailingly gracious, unswervingly thoughtful. (I have always wanted to be like her, but it’s clearly a lot of work, undoubtedly more work than I am capable of.)

One of my friends in college met her and later told me she was the nicest person he’d met. Then he paused, and added, “Well, nicest except for maybe my Aunt Ruby.”

“Remember that?” I ask my mother. “And I asked you if you thought you could win a nice-off with this guy’s Aunt Ruby? And you said, ‘Oh, yes, I’m sure I could take her down very easily,’ and then you laughed and said it was a trick question – that by answering yes, you had revealed that you were not, in fact, as nice as Aunt Ruby.”

I stop by the supermarket for supplies for my Airbnb (Pop-Tarts and beer, mostly) and I wait patiently while the cart-wrangling guy sanitises my cart. He does a very thorough job and when he’s done, I thank him for his outstanding work, and he’s like, “Where are you going with my cart?” because it turns out he was just a customer concerned about his health.

This makes me extremely happy. I can’t wait to tell my mother. Always, when anything happens, I can’t wait to tell my mother.

When I was about 20, I asked my mother what she would always remember about me and she said, “How much you love to talk.” I was disappointed, although I don’t recall what I’d wanted her to say. Maybe what a good writer I was. And she was wrong – I don’t love to talk. I only love to talk to people I love. Like her.

***

Today is the last day of my visit. I turn on the television in my mother’s room and find the local channel that plays classical music. “Do you remember,” I ask, “when Angus and Hector were three and five and they built a pretend TV out of a cardboard box, and then they had a big fight about what was showing on the pretend screen?”

I remember that. I remember how my mother being there to share it with me made it even funnier, how we looked at each other in the warm afternoon light of my living room and laughed. How she was so happy to take part in whatever I did, how we were both content to do nearly anything as long as we could talk to each other while we did it.

“Speaking of television,” I say, “I saw that Zendaya won the Emmy for best lead actress for Euphoria. I Googled Euphoria and read that it was a teen drama, so Ian and Hector and I watched it together that night while Angus was at work. It was – literally – the most sexually graphic show I’ve seen. When it was over, I apologised to Hector, who told me never to discuss it ever again. And the next day, Angus came up to me and said, ‘Hector told me you made him watch a porn film.’”

My mother and I didn’t have this type of relationship. We never talked about sex. But relationships change. I know that now.

I linger at the nursing home even though I know visiting hours are almost over. Saying goodbye to my mother, leaving her here, is so difficult.

I massage her hands with rose-scented lotion – maybe it will remind her of my father’s rose garden. I tell her about the time a man on a plane asked me to climb over him to get to my seat and I did, thinking he had limited mobility. “But then,” I say, “he got up twice to walk around and I decided I had been tricked into giving him a lap dance.”

I glance up and my mother’s eyes are open and focused on me, blazing with the desire to communicate. “Mom?” I say uncertainly. “Mom?” But she is gone. Nothing about her face changes and her eyes remain open – she doesn’t even blink – but she is gone. Or more likely, she was never there.

I hold one of her hands against my cheek. I say, Mom, come back. But I don’t say it out loud. I realise that I don’t want her to come back. I don’t want her to have any awareness of her life now, of the endless days and numbing routine, of the years that drag by while she sits here, unable to give voice to any thought. How can she stand it?

I start to cry. “Oh, Mom,” I say. “I’m so sorry this happened to you.” I rest my head on her lap. I wish I could say that she lifts her hand and strokes my hair gently, as though to comfort me, to somehow assure me that her life is not as hard as it seems. But it is a greater comfort that she doesn’t.

Now I sit writing this on my laptop in my Airbnb. I need cheering up and make a determined effort to list the positives in my life. Soon I will see my husband and children again – talk to them and laugh with them and hug them. I will sleep in my own bed. I will begin writing a short story I’ve had in mind for a while. Even right now, things are not so bad. A cold beer sits on a coaster by my laptop. An email from my best friend waits in my inbox, a text from my cousin hovers in my messages, and both will be filled with love for me and concern for my situation and probably some gossip, too.

And I have a new syllogism. Premise one: I love my mother. Premise two: I tell my mother stories all the time, even if only in my head. Conclusion: Storytelling is an act of love.

• Early Morning Riser by Katherine Heiny is published by HarperCollins at £14.99. To order a copy go to guardianbookshop.com