Who Am I to Decide How Long My Ninetysomething Mother Lives?

One Philadelphian’s deeply personal struggle with an aging parent’s end-of-life care.

end-of-life care

Betty Huber photographed at Pennswood Village on February 28, 2019. Photograph by Michelle Gustafson.

Sitting in my car one night a few months ago as I waited for a to-go dinner to be cooked at McMenamin’s in Mount Airy, I called my mother. I call her every day, because Mom is 93, my father died long ago, and my sister died suddenly a year and a half ago, so I’m really all she’s got, even as she has her own apartment in an old-age home with a button to push if she falls down and can’t get up. I’m her moral support.

“How you doing, Mom?”

“Not so good.”

“What’s wrong?”

“My son is a thief.”

Silence. She only has one son, so it was pretty clear whom she was referring to, and I’m like most people: When those blinking red lights of the law are pointed in my direction, my first thought is, What’d I do?

“You’re going to be arrested,” Mom informed me.

One of us regained himself: “What are you talking about?”

She explained: Since I’d recently borrowed an old phone of hers to access a new landline I’d just ordered from Comcast — a landline I got largely because cell service is lousy in Mount Airy and my daily calls to Mom kept getting cut off — I was therefore using her number as well, which meant that I was stealing from the phone company. The law was about to come down on me.

That makes no sense, I told Mom.

She had the proof right in front of her, in her phone bill, she claimed. I was going to be arrested.

Mom, who up until that moment had been in pretty good shape for someone 93 years old, had just taken the first giant step into the land of … well, let me put it this way: I drove home and managed to eat dinner with my wife, and then I lay on my living room couch for the rest of the evening, because I was sure my mother had left me.

She won’t like this — my talking about her this way — but it almost feels like I’m dispelling the notion that this episode, in any way, reflects her, or is her fault. She had a visitation, with the grim reaper taking a wire cutter to her circuitry.

Always, Mom has been a woman of great precision. Not long before that call, though, she recognized that she was having a little trouble with her checkbook — making small errors in arithmetic — which drove her crazy. So I took over her finances. Except there was a problem: Like a child writing too big, I didn’t keep the numbers within the allotted boxes in her check register. So I got fired from that (nonpaying) job, and Mom found Kay, who is only 80 and does the finances for a lot of the truly old at Pennswood in Newtown, where Mom lives. My mother has always liked things kept between the lines. It’s an orderliness I’ve railed against — and admired — for six decades. Or a little longer, given that I’m 64.

But suddenly, there we were, at an entirely different place, that night Mom was sure I was stealing from Comcast. She was gone. Lying alone in my dark living room before going up to bed with my wife (I do psychic trouble best by myself), I felt, more than anything, adrift. As if Mom had cut ties with the living and taken off for I didn’t know where.

I was wrong, it turned out. The next night, when I called her, Mom apologized, which is rare, because she is invariably right. “I’m sorry about last night,” she said. “I looked at my phone bill again, and I didn’t see anything wrong with it.”

“Of course you didn’t, since — ” I stopped myself. I’d been through all that with her several times, how what she was sure I had done made no sense. Instead, I was merely relieved to have her back.

For the moment.

Mom had been saying, for some time, that she was ready to die.

She would never act on it, never kill herself — it’s not on her radar. Mom’s quite the opposite, in many ways. She’s fanatical, still, about nutrition and taking her meds at the right time. She does have a living will that eliminates extreme measures — intubation, for example — to keep her alive. Mom has doubts about medical care to begin with, as if doctors in general intrude on her well-being rather than fix it, and my running joke for a long time has been that if she’s got a hangnail, nope, not going there, don’t help, I’m done.

But she’s on a collision course, one we’re all on. Pennswood, like a lot of care facilities, negotiates an uneasy relationship between the inherent aggression of American medicine and actual well-being.

In his best-selling book Being Mortal, surgeon Atul Gawande wrote, “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comfort they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”

Not so long ago, family members tended to die at home, instead of in hospitals or assisted-living facilities. Gawande notes that we want “autonomy for ourselves and safety for those we love. Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.” Which is a nice way of saying: Let old-age homes corral our broken-down relatives, given that we have lives to live.

end-of-life care

Author Robert Huber, with his mother, Betty Huber. Photograph by Michelle Gustafson.

When I ask Firas Saidi, a geriatrician and the medical director at Pennswood, whether he has to fight that tension between medicine’s drive to keep us alive and a sunnier approach toward old age, one where autonomy and control and not necessarily holding onto every last possible breath are taken into account, he smiles. Then he says, “I’m sort of undermining what the [medical establishment] is trying to do, by making the patient more informed. Part of me feels really frustrated, or even fearful, that for every Atul Gawande” — that is, a doctor who gets it — “there are a thousand other doctors out there.” Doctors who see their jobs as keeping people alive, the quality of those lives be damned.

None of this is simple. The only thing for me to do, really, is to understand what Mom wants. And that’s not so simple, either.

To say she was a woman of her era doesn’t quite do justice to the ferocity of Mom’s take on the world. Born in 1925, she cut her teeth during the Depression. Her father sold insurance and always had a job, but the family — Mom had two younger sisters — moved to a series of rowhouses in Trenton, sometimes skipping out on the rent. Grandpop drank, spent a lot of time out and about, and had a habit of smashing up cars. My grandmother, who was attracted to him because he made her laugh, often shared her troubles with my mother. Mom decided early on that she was going to marry a man quite different from her father, someone much more stable. Did she ever. My father courted Mom in early 1948, after getting out of the Navy, by telling her he would build her a house precisely like the one her family finally bought across the Delaware in Morrisville. He did exactly that, across the street, which was the house I grew up in. My father’s version of escape consisted of making a beeline for his workshop the moment he got home from his job in a Trenton factory. My mother often bragged that she and my father never had an argument — I believe her, and it’s her marriage Mom’s touching on when she says, as she did recently to some hospital functionary probing her past, “I had an easy life.”

But I don’t think that’s true. A simple life, yes, but small things often loomed large for Mom. Order was important. When my sister and I were young, my father got a promotion that had him coming home at 7:30 or 8, and Mom could hold dinner only so long. Her anxiety led to a diagnosis of “housewife’s syndrome,” and her green nerve medicine resided at a handy spot on the kitchen counter. There is a sense with Mom, as I look back, that the smaller the problem, the larger the anxiety.

She and I have always been at loggerheads, you might say, on general comportment. Mom is fond of telling a story about me playing in the grass and dirt just off our front porch on a nice spring day. She claims I was 11 years old, though I think I was probably four or five. Mom warned me about getting dirty as I ran a pickup truck through my highway, and I looked up at her, she says, with real confusion: “What’s wrong with getting dirty?” (I’m sure I wasn’t 11.)

That pretty much sums up the difference in our perspectives, writ large over many years and fights and near-estrangements. Mom demands that the world be spick-and-span to her specifications. My job, I understood long ago, was to dirty things up. In some ways, nothing has changed. I’m only a year away from Social Security and I still can’t write in the allotted space in a checkbook register, nor do I — heaven help us — even try.

And Mom always had a nose for trouble, real and imagined. When I was 13, we joined a local swimming pool, and my best friend, Toth, also 13 (I know I’ve got this age right), could be seen darting around the water in pursuit of a girl who lived in Trenton and sported a sleek black one-piece bathing suit. My mother observed this and decreed, “He’s going to get that girl in trouble,” which was about as likely, given our age and sophistication, as my beloved Phillies offering me a contract.

For a long time, I’ve tried to batten down Mom’s anxiety: “It beats having real problems,” I’ll tell her when she complains that her TV remote keeps chewing up batteries. Sometimes I hit her with one of my favorite Mark Twain nuggets of wisdom: “I am an old man and have known a great many troubles, but most of them never happened.”

Mom laughs at that one.

When I tease Mom about the possibility of hitting 100, I know what’s coming: “I’d like to go now.” She starts talking about going to sleep and hoping she won’t wake up.

But there are, of course, real problems. About four years ago, she had to give up running the gift shop at Pennswood because she was afraid of making mistakes with the money. Worse, she began finding it hard to read — she simply couldn’t stick with a story or train of thought very long, or she’d nod off. “Nobody told me what this would be like,” Mom started saying a couple years ago. Then, when my older sister died abruptly, Mom’s world narrowed more. Many things seem to simply take too much energy to bother with, such as going outside or checking out audio books. She began to sit a lot, the TV on.

When I tease her about the possibility of hitting 100, I know what’s coming: “I’d like to go now.” She starts openly hoping she’ll fall asleep some night and never wake up.

It’s a sentiment that from someone like Mom, I take seriously. And then, seemingly out of the blue, we had a decision to make.

I got a call, not long after the “My son’s a thief” episode, from my mother’s doctor at Pennswood during a routine exam. “I don’t like what I’m seeing,” Maryann Phinney told me. “She’s pale and falling asleep during her visit. I’m sending her to the emergency room.”

Mom still lived alone, in her own efficiency at Pennswood, and more and more, she’d been spending her afternoons asleep in her favored armchair. Often, she’d start drinking a cup of tea and then find it in her lap. “I just can’t keep my eyes open,” she complained. I chalked it up to being old; Phinney knew better.

When I got to St. Mary’s 40 minutes after the call, they’d discovered that the hemoglobin in Mom’s blood was dangerously low and had already done an endoscopy, revealing two intestinal ulcers — likely, internal bleeding had caused the low hemoglobin and her dreadful fatigue. She looked pale and a little out of it, though her hair, as always, was spot-on. But her hemoglobin dropped further in the hospital, suggesting she was bleeding then and there. Though it sounded ominous, there was a solution: They could go in and cauterize the bleeding.

“And if we don’t?” I said to the ER doc.

“She could bleed out and die.” We looked at each other for a moment, the doctor and I. “We could keep her comfortable,” he said.

I admired his restraint — there was no attitudinal You certainly wouldn’t go that way, now would you?

To me, it was decision time.

Mom was wheeled to a sort of holding spot, with an attendant and a TV where Wheel of Fortune played. I explained the situation to Mom as she lay on a gurney. Her blue eyes gazed at me — she seemed to understand perfectly.

It was a strange moment, in how calm we both were. So much had changed between us over the years — even as we can revert back to being mother and child. We both grew up. After my father died 25 years ago, Mom got a second wind: She became a big reader of early American history. After moving to Pennswood, she ran the gift shop, gave tours of the place, joined the food committee. For some time, there was a clamor, apparently, to get seated at the table in the dining room that Mom organized every Sunday. Once, when I took a tour of the nursing wing with her, Mom stopped to say hello to a Brooke Astor look-alike who stage-whispered, “Don’t tell her, but she is really neat.”

Mom? It wasn’t her popularity that surprised me, but the realization that she’d been living a life I knew little about. As if she had grown into another person on her own, in plain sight but without me seeing it.

Now, as she lay on that gurney, I asked her, point-blank, whether she wanted to forgo the cauterization. We stared at each other, not in terror, but as if somebody had moved the clocks up too fast, struck dumb by the mutual thought: “My, this is a leap, isn’t it?”

Mom’s “Nobody told me what this would be like” goes for me, too. It’s absurd, but here we were. Three hearts made out of tinsel were up on the wall. Vanna White was still doing her whirl to turn letters on the tube. The horror of the end isn’t the end itself but the stupidity of living.

“Do you want to die, Mom?” I asked her.

She didn’t answer for a moment.

“Do you understand the question?”

“I’ve lived a good life.”

“Do you want to do the procedure?”

“I’ve lived long enough. We live too long, now.”

This was a kind of non-answer. I called my wife. It helped to vent about the spot we were in, but that didn’t give me an answer, either.

Then Mom — and I — got a break. A scan revealed that the bleeding had stopped.

Good news. I called my wife. They wanted to give Mom a blood transfusion. Should they? I wondered. “Of course,” Karen said. Sure, a no-brainer. Blood transfusions are routine. I gave the go-ahead. The transfusion gave Mom a pop of energy, and soon enough, she was out of St. Mary’s, back to Pennswood, though now with around-the-clock care in her apartment for a few days. And then she was moved to Woolman, the unit with hands-on care, as Pennswood and I discussed the next step.

She’ll stay in Woolman, because the writing is on the wall: Mom’s gotten far too shaky — literally so, with a risk of falling and getting another compression fracture in her spine (she’s had several) — and forgetful about medication. Bathing has become a dangerous chore. Mom can no longer safely live alone in her own apartment.

In Woolman, she has what’s basically a hospital room — attendants constantly go in and out — with one exception. Some of her stuff from her apartment — her bureau and a chair or two and pictures and knickknacks — stays with her. I U-Haul the rest of her furniture and her kitchen to her grandsons, Sam and Nick, and my basement. Mom’s world has now become primarily Kate and Betty and Pinky (named by Mom for her pink hair), immigrants from Africa, the Pennswood workers who care for her. She’s not allowed to get up alone, even to use the bathroom, because of the risk of falling. But naturally, Mom is too stubborn and impatient to hit the buzzer around her neck and wait, so she shuffles around her room alone, no matter how often I tell her she’s one fall away from spending the rest of her life in bed. It’s the lot of Pennswood’s women, particularly, many of them in their 90s — they keep falling down; their riding carts neatly line up outside the main dining room at dinnertime like so many BMWs.

end-of-life care

Betty Huber’s photos. Photograph by Michelle Gustafson.

It’s a sad turn. The old women (and a few men) sit in Woolman’s communal area, where a huge TV always seems to be showing Gone With the Wind, many of them nodding off. Mom doesn’t join them. She hasn’t gone outside for months and doesn’t care to, and it’s along about here, a couple months into her new existence, that I begin to think I made a big mistake ordering that blood transfusion when she was in the hospital. I don’t know if she would have died without getting it, but I now feel complicit in keeping her alive regardless of her wishes.

If Mom truly wants to die, why are we intervening with any level of medical care? Why aren’t we just keeping her comfortable and letting her go? Is that even possible, here at Pennswood?

Dr. Phinney says the first step, if one of her patients who isn’t at death’s door wants to die, is to screen for depression, which is, after all, a medical condition. But ultimately, how much medical care a patient gets is up to that patient.

Ezekiel Emanuel, a bioethicist and oncologist at Penn, wrote an article for the Atlantic a few years ago about wanting to die at 75, because at that point, one’s real usefulness has played out. I catch up with him now — he’s 61 — and Emanuel is still determined that at 75, he’s not going to commit suicide, but he’ll forgo medical tests and antibiotics and any other interventions in order to let the end come as quickly as it might without modern medicine blocking the exit. In a sense, I’ve found my guy, because Emanuel agrees with me: “You may have made the wrong decision,” he says of my nod to give Mom that blood transfusion.

But then, slowly, things turn a bit.

My daily phone calls to Mom get calmer, and she shares certain things that give me pause: One morning she gets a shower from Kate, who takes no guff from Mom, and Mom says, “It is so good to have your back rubbed.” She tells me about the two men who come to her room in the middle of the night — big, strong men — to help her with the most intimate hygienic needs, and just as I think a horrible shoe is about to drop, Mom says, “And they are so gentle.” And the attendants get a kick out of Mom for her blunt sarcasm. A few years ago, longtime New Yorker writer Roger Angell wrote about what it was like to be 90: “I believe that everyone in the world wants to be with someone else tonight, together in the dark, with the sweet warmth of a hip or a foot or a bare expanse of shoulder within reach. Those of us who have lost that, whatever our age, never lose the longing: just look at our faces. If it returns, we seize upon it avidly, stunned and altered again.” Mom hasn’t found that, exactly, but a smaller version, and the point is, she is finding a way, so simple, to feel alive.

Still: “Do you want to die?” I ask her one night, over the phone, in another attempt to pin down her true wishes.

“I wouldn’t mind,” she says. She thinks for a moment. “The only thing I would miss is watching Sky grow up.” Sky is her great-grandson, my son Sam’s 20-month-old boy. It’s not lost on me that she wouldn’t seem to miss me.

But I get it, I think. The scope narrows: a back rub, gentle hands in the middle of the night changing her. A decent cup of coffee. And her great-grandson. Dust to dust: Sky is just starting to say a few words, a remarkable achievement as you watch it happen, little by little. And, as Mom says, “He walks better than I do.”

There is, of course, another question: Who am I to decide how long my mother lives, even though I may very well be the one who does? We don’t quite get to a definitive answer on her desire or my power, however, before things escalate: In late January, I get a call from Pennswood. Mom’s being taken to the ER after a fall in the bathroom, where she went alone. She may have broken her hip. Exactly what I — and Kate and Pinky and Betty and Dr. Phinney — have been warning her about.

There’s no decision to make on this one. If Mom doesn’t get surgery, she’ll never get out of bed; she’ll risk bedsores and pneumonia. It would be a brutal last leg of her life.

The surgeon inserts a rod, pronounces the break a little worse than he thought, yet says he expects her to be able to walk again.

She gets pneumonia anyway, in the hospital, coupled with the urinary tract infection she went in with. (As Philip Roth wrote in his novel Everyman: “Old age is not a battle. Old age is a massacre.”) Nevertheless, she gets released back to Pennswood, and the worst of it hits me there, in early February: Mom has no idea where she is or what she’s been through. She knows who I am but otherwise talks a lot of nonsense. A red-haired attendant at the hospital took her out on some sort of date, she remembers, which involved lying naked on a bench somewhere. Oh, Lord.

I leave her room for a couple minutes, and when I return, she’s somehow managed to sit up, on the edge of her bed —

“Mom, no, what are you doing?”

She looks up at me. She doesn’t know.

“Stay here. Don’t move.” I go down the hall to get help — I’m afraid that getting her back in bed myself will mess with that hip with a new rod. An aide says she’ll come; I slip back to Mom, who’s still sitting. I stand next to her. Mom looks up at me, seeming to wonder what we’re doing here. Screw it — slowly, carefully, as one would handle a newborn baby, I maneuver my 93-year-old mother back under the covers and tell her to stay there.

She talks more nonsense. This is normal, the medical people say. The very old, especially, often go a little bonkers when they leave home for a hospital stay. It even has a name: hospital psychosis. Or it’s a reaction to anesthesia, or other meds. It feels like an anvil sits on my shoulders. Mom accuses me of having sport with her, of making up stories to confuse her. Why, for example, did I recently take her to the Jersey Shore? What did I have in mind with that? There was no such trip, and I refute her as gently as I can, which is probably not so gentle, given that her hearing aids aren’t in.

For two weeks, I make the 40-minute drive to see her every day and then, on the way home, eat a to-go slice of pizza, listen to sports-talk radio, and feel like it’s a small victory just to make it home to bed.

“The problem with medicine and the institutions it has spawned or the care of the sick and the old,” Atul Gawande wrote in Being Mortal, “is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all.”

What this means, of course, is that we need to be the deciders and engineers of our endgames, as much as possible. And the only approach is to understand, as best we can, what we desire. Or what a loved one does — it’s back to that. As well as I know my mother, I don’t really know.

But just as I’m thinking Mom is out of gas and I’ve failed her, she surprises me once more: “It scared the bejesus out of me,” she says a few days after her surgery. She’s talking about the rampant stories and nonsense that have been trolling through her mind, masquerading as reality.

Mom has returned, once again.

One night I visit her with my old friend Toth, the boy who, when we were members of the same swimming pool, was going to “get that girl in trouble.” According to Mom.

I ask her about that now, whether she remembers Toth and the girl, the quicksilver sprite in a black bathing suit. It’s something of a test.

Mom gazes at both of us in turn — she has known Toth for half a century. And she knows full well that something is up.

“You like to give me a hard time,” she says, in a very good imitation of being disgusted, especially, by me.

Ah! Good! Her toughness! She doesn’t recall the girl, but she has passed the test.

“You always try to get my goat,” she says — maybe she really is annoyed. But what Mom has never admitted is how much she likes this game, as much as Toth and I do. Long ago, my friends used to pop over to her kitchen just to argue with her: Premarital sex and college professors filling our heads with strange ideas and the world generally going to hell in a handbasket all needed to be wrestled into submission. She’s always been tough, though lately I have, I finally realize, underestimated her.

Her hip surgery is so fresh that she can’t even lift her left foot yet in her rehab sessions; Mom doesn’t really know if she’ll ever walk again. But as Toth and I tease her and she plays the foil, I understand that her will to carry on — to live — is deeper than she will admit or I have recognized.

Toth and I spy, out Mom’s door, her neighbor shuffling by, walking inch by inch, and Toth later asks me: “Would you want to live like that?” Of course, it’s not about what you want; it’s about what is, and whether you can accept it. I ask Mom again about the aides who attend to her in bed, cleaning her up and turning her and dressing her, whether they’re gentle, and she says yes almost dismissively, as if to say, that’s the reality, let’s move on. Twenty-five years ago, when my father, the center of her world, died from pancreatic cancer, I was sure she would fall apart — instead, she soldiered on, into a new life at Pennswood. Now her focus, when I’m with her, seems to be the relationships with those aides, Pinky and Betty and Kate. Her care. What’s before her. On the morning of her surgery, Mom suddenly pulled the sheet a little higher over her chest and then seemed almost enchanted with it. “These sheets are so warm,” she marveled. “And they’re only cotton.” Which strikes me now as a beautiful moment.

“Our happiness is built by attitude and intention,” Mary Pipher, a clinical psychologist who just published a book on aging, recently wrote in the New York Times. “Attitude is not everything, but it’s almost everything.” Pipher visited the jazz great Jane Jarvis when she was old, crippled, and seemingly stuck in a tiny apartment, with a window facing a brick wall. Asked if she was happy, Jarvis said, “I have everything I need to be happy right between my ears.”

Mom wants, given her nature, to control the end of her life. She can’t. Neither can I. But there’s a lot still there, I can now see. Mom always gave as good as she got, and as I tell a story to Toth about Mom not leaving our house after a severe winter storm, long ago, for two whole weeks — “I’d think you’d at least want to go out and make a snow angel or something, Mom,” I tease her — and how a neighbor up the street was so concerned that she came down to see just what the problem was, Mom nods in my direction, pauses a beat, and says to my old friend, “He is full of bullshit.”

Everyone laughs.

On the morning of March 27th, Betty Huber died at home in Pennswood Village, Newtown, of congestive heart failure. The previous afternoon, her family had gathered to spend time with her — including Sky Gabriel Huber, her 20-month-old great-grandson. Sky could always make her smile, though she didn’t like being called Great-Grandmom because it made her sound old. Betty was 93. Rest in peace, Mom. —R.H.

Published as “Ninetysomething” in the April 2019 issue of Philadelphia magazine.