“I’m not ending up like this,” I say aloud. Not really speaking to my mother, though my mother is the only other person in the room.
We are crowded together in the bathroom of her bedroom suite, tending to her personal care. Personal care is a euphemism: The challenge is to write as frankly as possible about aging while also protecting my mother’s privacy, which she would want if she still knew what privacy was. One solution might be to not write about my mother at all, but to wait a few years until I am myself experiencing the indignities of aging and write about those. But that assumes I’ll still possess the ability to write.
“I’m not ending up like this,” I say. Not to my mother but to God or the universe or maybe just to myself.
“You’re not ending up like this?” my mother asks.
She’s like this now, repeating the last thing you say. Good morning. Good morning. Time to get up. Time to get up?
I respond by slipping into simple, declarative sentences, as with a child. Let’s put on your sweater. Let’s put on my sweater? Eat your toast and take your pills. Eat my toast and take my pills? The repetition seems half processing, half placation, an eagerness to please the parental figure bossing her around. This endless echo makes up most of my mother’s conversation these days, along with the phrase “I don’t know.” A woman who, in another life, was never at a loss for words.
“Nope. Not getting this old.” A harsh thing to say to an 88-year-old woman. But in 10 minutes she won’t remember, I tell myself.
“You’re not getting this old?”
“Nope.”
Then she surprises me. A light bulb sputtering to life. “You’re not the one in charge.” I laugh, apologize. “OK, Mom.”
But as I help her to the door I wonder: Who else but me should be in charge of deciding when the life I have led has been enough?
When people learn that both my mother and my father are still alive, they tell me how lucky I am.
As I write these words I have just turned 61, my mother is 88, and my father 91. This is unusual. By my age most Americans have lost at least one of their parents, while nearly half have lost both. The picture is even starker for Black people. By age 34 nearly a quarter have experienced the death of a parent, compared to about 15 percent of white people and 17 percent of Hispanic adults. Add to this the fact that Black women tend to have children earlier than white women, meaning that Black people lose their parents earlier in life even though their parents are, on average, younger than those of their white peers.
“You’re the only Black person our age I know whose parents are still alive,” says a friend. “Your family belongs in the Smithsonian.”
When people tell me how lucky I am to still have both my parents, they mean that I am lucky to have enjoyed so many years of love, wisdom and parental support, of beach house rentals and Christmas-card holidays and grandparently help. There’s no use saying this idyllic vision is not true for everyone; people will still insist. And certainly, having one’s parents live well into one’s own golden years gives more time for understanding and reconciliation. If that is going to come.
My sister is our mother’s primary caregiver; when people say how lucky she is to still have our mother with her, she does not smile. “The people who have been through it never say that,” she says. I tell her about a man I met in South Carolina, who, hearing me read from an essay about my mother’s increasing dementia, rose and spoke at length about caring for his mother until her death. He never regretted a moment; it was a privilege and a blessing and a joy. And you wouldn’t believe how funny those older ladies in the nursing home could be. My sister scoffs. Visiting your mother in a home is not caretaking. He has no idea.
No one who has not done full-time caregiving of an aging relative has any idea, not even if, like me, they try to help when they can. Every few months I fly across the country to offer my sister a week or two of respite, at the end of which I am exhausted, not from the physical labor but from the mind-crushing tedium. And the sadness. And the isolation. And the feeling of being trapped.
What are we doing now?
Just sitting here. I’m going to start dinner soon.
What are we doing now?
Watching TV. You remember The Jeffersons?
Ready to go?
Where are we going?
I don’t know.
I’m not sure what it is I’m supposed to feel, seeing my mother like this. A better person, a better daughter, would feel only sadness, a minor grief before the major grief to come. My mother was the first person in her family to go to college, on her own steam and her own initiative. Marriage and motherhood derailed that ambition before she could graduate, while divorce and impoverishment heaped stones upon the wreck. But she made sure there were books in the house and our homework was done and our aspirations were toward higher education as the ticket up and out. My mother was a woman whose sharp wit and sharper tongue could be wielded either on your behalf or against your tender person, but there was no denying the weapon was formidable. To see such a woman reduced to dependency is heartbreaking. But what I feel is not just sadness. What I feel is something else.
Who are you?
Your daughter Kim. You have four daughters.
Four daughters? How did I get so many?
You just kept trying until you got the boy you and Dad wanted.
To this my mother shrugs.
About my mother—about this woman—I have written both too little and too much, as writers will. Certainly she thought it was too much. One of the last conversations I had with her before the dementia took over—or perhaps when the dementia was first setting in—involved her screaming in fury that she hated me, that I better stop writing about her or else. “She doesn’t mean it,” my sister said. But I was pretty certain she did. In fairness, I couldn’t blame her. It doesn’t matter how carefully one does it, or how ruthlessly one also turns the unblinking eye upon oneself, or that the writer’s experiences are the only real material the writer has. Writing about people in your life is a kind of betrayal.
I was only surprised that my mother had actually read my work. She’d never mentioned it.
Now my mother reads the print on my T-shirt: Castle Hill? She will do this over and over. My sister wears her shirts turned inside out to shut it down. My sister, the better daughter, says that although this caretaking of my mother is hard for her, in some ways our mother is “living her best life.” I do not say how much I hate this phrase.
“She’s not suffering,” my sister says. True enough. In many ways, my mother’s life has never been this pleasant. No worrying about money, no worrying about protecting her children from the dangers of a racist society. All her needs are attended to, most desires (You want ice cream? Yes!) immediately met. My sister’s house is spacious and beautiful, far grander than any house my mother owned. More poignantly, dementia has freed my mother of a lifetime’s accumulated emotional wounds and grievances. The abandonment, the betrayal, the abuse, all largely forgotten, the pain finally softened, the memories finally dimmed.
But gone too are agency and purpose and what seems to be any kind of interiority, though we can’t know this for sure. Gone is dignity, not in the sense of useless pride but in the sense of critical self-respect. Left behind is placidity atop a teeming helplessness.
Is my mother living her best life? Only she could say. But I can tell you, it sure as hell would not be mine.
I am reading, while my mother naps, about assisted death. Assisted death, or, more precisely, medical aid in dying (MAID) should not be confused with mercy killing or euthanasia or even suicide, says the organization Death With Dignity. Using the incorrect terms misleads and frightens the general public, stiffening resistance against MAID laws.
Oregon was the first state in the U.S. to allow assisted dying in 1997. Nine other states have since followed suit, including Vermont and Maine but not the People’s Republic of Massachusetts, which I call home. But Maine is only an hour away.
Around the world some 300 million people have legal access to assisted dying. In the United States, only those with a terminal illness can access MAID, but in other countries, people who are experiencing “unbearable suffering” can potentially receive aid in ending their lives. Which, of course, begs the question. Who gets to decide what’s unbearable?
“I want to go home,” says my mother, not for the first time.
Home could mean Memphis, Tennessee, the city where she spent her formative years and to which she returned when her marriage came apart, the city where she raised the five of us. It could mean her grandfather’s farm in Mississippi, the setting of her early childhood, the place she was happiest. Or maybe it just means the house before the house in which she currently lives with my sister, the house where her bedroom window looked out over a golden California hill on which sheep grazed to keep the grass down. Wanting to go home could mean any of those things or others, but given my mother’s age and her cottony dementia, we assume that by home, my mother means heaven. We assume my mother is ready to die.
Then again, maybe not. To be sure, my sister takes her for a cross-country visit back to Memphis, a grueling journey for both parties. It’s a heroic effort, one I’m not sure I would undertake, but they get to Memphis and visit relatives and see the old homes and visit graves. When I ask my sister if our mother knew she was in Memphis, she says no.
“I want to go home,” my mother says.
Every month is different, every day is the same. Wake her gently in the morning, bending over to help her sit up in bed. Wonder about the mountain of blankets under which she sleeps, how she can keep from suffocating. Respond gently when she asks who you are. Change her clothes, wash her face, tend to her personal care needs. Direct her down the hallway to the amazing one-person elevator my sister has installed because there is no way my mother could manage the stairs.
Go inside.
Go inside?
Sit down.
Sit down?
Push the down button.
Which one is the down button?
That one.
Breakfast with the television droning in the background. With luck a few minutes of I Love Lucy or Sanford and Son will hold her attention. Without luck it’s a minute-to-minute challenge to keep her occupied. We try to watch television. We try to do a simple puzzle. We pile into the car and drive aimlessly around, killing minutes or hours, killing what’s left of my mother’s time. I think of driving my children when they were babies, lulling them to sleep.
Most days my mother seems disinterested in any kind of meaningful engagement with the world, wanting only to return to bed. But some days she rallies briefly: part of a conversation, the length of a favorite song. One day while I’m cooking and keeping watch, I see her discover, on the table before her, a dollar bill. She examines it intently for a good two or three minutes. Then folds it and tucks it in her bra.
Some days are worse than others. Rising takes effort; she stumbles while walking; complains of pain and pain and mysterious pain. One day my sister calls, convinced the end is coming and I buy a plane ticket. The next day she calls again: a miraculous recovery. Situation status quo. At least for now. It’s like trying to read tea leaves. At the bottom of a barrel. On a boat on the ocean in the middle of a storm.
“Is there anything actively killing your mother?” asks a friend when I ask what her mother’s death was like, how it progressed. But her mother had cancer, advanced, and once death began it was undeniable, she says. “For a few months I was going every other week or so and then it was clear the end was coming and I just went and stayed.”
My mother survived advanced-stage cancer and takes a handful of medications every day to combat a host of other medical conditions, but there is nothing actively killing her. She might live another year or live another 10. I visit as often as possible to help with her care but also because I would like to be present when she dies, as much to support my sister as anything. But it’s hard because who knows?
“I can’t tell you,” says the palliative care nurse. Meaning she doesn’t know and that she wouldn’t tell us even if she did. “I can make a referral to hospice and you can talk to the hospice nurse.”
My sister is reluctant to talk to the hospice nurse. I think of the time, years before, when I volunteered in a hospice program. The woman to whom I was assigned, Mrs. D, lived in a perfectly fine, perfectly depressing nursing home, through whose beige-colored, wheelchair-lined halls I walked twice a week. Mrs. D was almost always in bed when I arrived, napping lightly or listlessly watching Keeping Up With the Kardashians (enough to depress anyone). It took some time for her to warm up to me, but eventually she confessed that she was tired of living. She gestured towards the ceiling: “What’s the matter? Out of room?”
Were there others in that perfectly fine, perfectly devastating nursing home who still embraced life? Who rose stiffly from their beds every morning and greeted the day with a smile? Almost certainly. Some people want to hang on to life until the last possible moment, hang out in God’s waiting room until the last light goes off. Do not go gently into that good night, et cetera. Good for them.
But some people are like Mrs. D, ready to call it a day rather than sit in her bed and stare at Kim Kardashian. But they aren’t the ones in charge. We decide to wait to talk to the hospice nurse.
Back in Boston, I have volunteered for a longitudinal research study focused on dementia. When the project manager asks why I am interested in taking part in the study I tell him about my mother. I say I also know that Black people tend to be underrepresented in many research studies, given that so many Black people have a reasonable historical suspicion of medical research (see: the Tuskegee Experiment).
I give blood samples, have a physical exam, undergo an MRI of my brain. People warn me about the noise and discomfort of the MRI, but lying in the machine listening to yacht rock is comfortable. I fall asleep to the sounds of Christopher Cross.
The cognitive tests are far more taxing. For more than an hour I sit across from the young research assistant and try to memorize images and stories, name as many words which begin with L as I can in a minute, draw figures and race to connect numbers and letters through a maze. It’s oddly stressful work: After all, your future is on the line. When I first volunteered I asked my husband if he wanted to join. “No,” he said, quickly. He didn’t want to know what lay ahead. But I do.
Most people would rather schedule a root canal than think about aging, decline, death. When I raise the topic with friends, they either deflect or laugh or tell me I’m not old enough to think about it (wrong). But a few have considered the inevitable, usually those who have watched someone endure Alzheimer’s or dementia. Of those people, many mention Switzerland, which has allowed assisted dying since 1942. As in, “I hope I don’t have to go all the way to Switzerland!”
What are we doing now?
This is not to suggest my mother would ever have made such a choice had one been available while she was still mentally competent. Far from it. My mother is a Christian, a believer in God and Jesus and salvation and heaven and hell. We never discussed it, and such discussion is no longer possible, but I’m pretty sure she considered any form of taking one’s own life to be a sin.
It turns out, though, that nowhere in the Bible is suicide explicitly prohibited, nor even directly categorized as a sin. The omission cannot be blamed on a lack of opportunity; the Bible is full of men who kill themselves, mostly out of pride or honor—or in the case of one named Ahithophel, a fit of pique after his advice was rejected. My favorite story is that of Abimelech, a king of Shechem who rampages around the countryside, slaughtering people left and right, including 70 of his own brothers. Eventually he reaches the city of Thebez where the people fight back, and “a certain woman” (unnamed) tosses a millstone that crushes his skull. Mortally wounded and mortified, he asks his armor-bearer to finish the job, “lest they say of me, a woman killed him.” The armor-bearer runs him through with his sword. Whether or not this strictly qualifies as a suicide, I leave to you.
Not even on her darkest days would my mother ever have taken her own life. But when she woke up from the surgery for her cancer and discovered the surgeons had left her with a staggering rearrangement of her body with which she would have to live and grapple the rest of her days she said, in despair, “You should have let me die.”
It is a bright and sunny January day and I am visiting my mother and sister in California. My husband has declined to travel with me, preferring to remain at home in Boston, doing whatever he does most days since his retirement. Later, when the marriage fractures, he will say, of the times he accompanied me to my sister’s house to care for my mother, “You think I wanted to go to California and sit around for a week? You think that was fun for me?” For now he responds amiably to my texts checking in. He never reaches out to check on me.
My sister has flown to Hawaii to visit our niece and to have a break from the burden of caretaking. For the first day or so my mother is much the same as the last time I visited: docile, distant, diffused. But on the third day she wakes up as chatty as a toddler. As I help her rise from bed she points to the ceiling and asks, “Who are those four up there?”
I don’t know who she’s seeing in the atmosphere, and I say as much. She smiles and shrugs; it doesn’t matter. By the time we get her washed and tended and down to breakfast she is going full steam.
“Ever been out in public and you don’t know how you got there and what you were doing there? And you’re just confused? That happened to me this morning.”
I put her breakfast on the table, intrigued by what is happening. “It did? I’m sorry.”
“I need to be careful. Might get lost and never find my way home.” She laughs. “That would be bad for me, good for everyone else.”
From there she slides into a long conversation about all the places she has been. I sit at the table listening until it occurs to me to open up my laptop and start taking dictation. The writer is always gathering the scene.
“I’ve been to nice places and places that weren’t so nice. We’ve had a good life. I’ve been a few places. Most of the time the places I went had something to do with the military. We live and learn. Wherever I am I make myself at home.”
She picks up a small leather bracelet on the table. For five solid minutes she fixates on it, putting it on and taking it off again. Then she looks up at me. “I’ve taken care of children most of my adult life. That’s how I got to go to so many places. They wanted someone to help them with children. They thought I was a pretty good child care provider.”
This is true: My mother was always good at taking care of children. After babysitting her way through two years of college, then raising the five of us singlehandedly after the divorce, she moved to California and began a career running a care home for mentally disabled children. Some of these young people came and went in a few months, but many stayed with her for years.
“You were definitely good at caring for children,” I say. “You kept everyone safe and clean and housed and fed.”
She smiles at this but she’s not interested in my memories, only her own. “Matter of fact, I’d like to go back to my younger years. Not too young: 10 to 30. I wish you could have been with me. I had so many good times. I wish you had been with me. You would remember but I can’t remember right now.”
She pauses, thinking. “Who was that who struck Pearl Harbor? I was over there.”
“Japan,” I say, and it is true that my sister took her to visit Hawaii a few years before, when she was still herself mentally, though her physical health made the trip difficult. They toured Pearl Harbor, saw the memorials and the ships. It made an impression.
“I remember spaces,” she says. Then, “I had a good life. I didn’t have a bad life. I didn’t have a silver spoon, but I had a good life.”
I type these words carefully, tears stinging the back of my eyes; I want to be able to report them to my siblings. Rarely have I heard my mother speak about her life in the positive. As far as I know her best years were the childhood ones spent on her grandfather’s farm, before her mother sent for her to come help out with her new half-siblings. Maybe a few blissful years when she was the first in her family to attend college, a few years of poodle skirts and cat-eye glasses and living the life of the mind. Then one summer she went north to work for a white family and met my father. The happy years ended there.
Now she says, “All of my brothers, they had a good life, but they didn’t appreciate what they had.”
My mother loved her brothers. Every one of them is dead; several died on the street.
“It’s really nice while you’re doing it, but it’s hard work. You got to be a believer that you can make it happen.” I don’t know what she means by “it”—life, perhaps—but I do not want to interrupt to ask her.
“Lord knows I’ve been to a lot of places. You think you’re going to be somewhere and settle down and then something will come up and you have to fly away again. You have to be in constant watch: where you’re going, what you’re doing, who you know. If I ever get back to some of the places I’ve been I’ll let you know.”
“OK,” I say, typing fast.
She looks at the television. I have it tuned to an oldies channel, hoping the shows will jog her memory. The jazzy, downbeat theme song of Perry Mason rings out. Raymond Burr, in black and white, glances up from the defense table.
“That’s how my life is,” my mother says. “It’s good until it’s bad.” She turns back to me. “If you look at it from the right … the right kind of mind … it’s all good. We’re all blessed. We’re blessed to be here, because God doesn’t have to have us here. He’s got more things to do. I’ve had a good life. I’m just about ready to go in now. I’ll be happy to go. Too much work here. Too much to do.”
She smiles. “I’m kidding.”
“You’re funny,” I say.
When her chattiness winds down I go upstairs and gather some photos for her to look at. For the first time this week she correctly names two of her brothers and one of her sisters, before turning her attention to the tinted photo of a smiling woman, her gaze off in the distance as if awaiting a bright future to come. “Is that Aunt Annie?” she asks.
I hold the photo closer so she can better see. “That’s you.”
She seems skeptical. “That’s not Aunt Annie?”
“Nope. That’s you.”
“I’m good-looking!” she says with a laugh. “Might make a fortune some day.”
This is (I think) the last time I will see my mother this vibrant and self-reflective. When I visit again in the summer of 2024 she will have sunk once more into passive obedience. When I return late the following winter, both my marriage and the nation will be unraveling. Although the results of my tests from the dementia study come back indicating my cognitive abilities are normal for my age, I will also feel as if I am on the verge of unraveling.
What’s wrong, what’s wrong?
Nothing. I’m OK. Eat your breakfast.
Why are you crying?
My husband is being mean to me.
Why?
I don’t know why. It doesn’t make any sense.
Well, (my mother lowers her voice) fuck him.
Later she asks again. Why are you crying?
My husband is being mean to me.
Let’s kill him.
This makes me laugh, harder and longer than I have been able to do in months. My mother just looks at me.
Later she says, I like you.
Thanks. I like you, too.
I love you.
Which is a thing, bless her, my mother was mostly unable to say when we were children. The weight of all she had to bear kept those words locked inside. Which now I understand. Now I know she loved us in the ways open to her. Now I know her love meant the roof over our heads and the food in our stomachs and the clothes on our backs. Now I know that her love kept her from abandoning us as our father had. As her mother abandoned her. Now I know. But I didn’t know then.
To hear my mother say “I love you” when she doesn’t know who I am is almost more than I can stand.
Some days I think that in a humane society, every person would be given a cyanide pill upon turning 65, for use whenever they and they alone decide it’s time to exit life. No one would be pressured or even encouraged to use it; those who objected or feared having such an object around could immediately bury their portion in the backyard, or flush it down the toilet or toss into the ocean. Only those who wanted to stash their pills away for future use would do so. This is my modest proposal. I admit it is a selfish one.
Perhaps, for safety, the pill would come encased in some biometric covering which would only dissolve in your own, individual digestive tract. Anyone else swallowing the pill would find it passing intact through their system, as harmless as a cherry stone. Or we could take a page from the spy movies of the Cold War era and implant a capsule beneath a false molar, to be smashed and ground when the appropriate time arrived. Something. Listen: We have dancing robots and driverless cars and watches which track every gurgle of your gut. We can figure something out.
A friend is appalled by my thought experiment. What, she demands, would prevent someone who is simply having a bad day from impulsively using the pill? It’s a reasonable question, though not, apparently, reasonable enough to bar a person as young as 18 (in some states) from purchasing a weapon capable of achieving the same aims, only violently. My modest proposal would restrict the pills to persons 65 years of age and above. A time of life when impulsivity has diminished for most of us.
If others insist that 65 is too young, I’m willing to push the distribution age to 70. But no further than that. For people with late-onset Alzheimer’s, symptoms usually begin appearing in the mid-60s. Across the many varieties of dementia, 65 is the average age of onset. There’s an obvious risk to delaying too long.
“Reality is a hard master,” my mother says.
I look up from the laptop where I have been answering emails and putting together a syllabus and doomscrolling. My mother sits across the table from me. The television blares.
“What did you say?” Did I hear her right? Was she repeating something from the television, or telling me something I needed to hear?
What are we doing now? my mother asks.
“Reality is a hard master,” I say back to her.
My mother nods.
