“Call this number to schedule the oxygen delivery,” the case manager instructed me, “and I’ve already arranged for a wheelchair.” She handed me a printout, several pages long, of discharge instructions. And the hospital pharmacy delivered two shopping bags of medication to take home. My husband was coming home, shaky after weeks of antibiotics, blood transfusions, and dozens of procedures, tests and blood labs. During his hospitalization, a team of doctors, RNs, nursing assistants, pharmacists, physical therapists, respiratory technicians and social workers, not to mention dining and custodial services, oversaw Keith’s care. The realization that those responsibilities were now mine engulfed me like a forest fire. I zipped and unzipped backpacks in a frenzy of packing. At the same time, dazed and overwhelmed, a single thought replayed in my mind: I did not sign up for this.

In fact, I did sign up for this. Twenty-five years earlier, a minister who my mother had found in the phone book, presided over a brief marriage ceremony in my parents living room. As we recited the “in sickness and in health” part of our vows, neither one of us pictured this. Like any young couple, “for worse” was not part of our plan. We got married to build a life together, to raise a family and to pursue shared dreams. I imagined growing old together but I never envisioned sickness to go to beyond bad knees and a touch of arthritis.

And I never envisioned cleaning vomit after an intense infusion session, rushing to the emergency room, flushing an IV line with saline, traveling to another state for a clinical trial. No one told us that in our early fifties, while raising two teenagers, Keith would be diagnosed with a chronic, incurable disease and I would be his primary caregiver.

How I presumed we would dodge the “in sickness” part of our vows is particularly puzzling considering what I witnessed in my parents’ marriage. My father, at age fifty, developed a rare vascular malformation in his spine and spent the next twenty-seven years in a wheelchair. Paralyzed from the neck down, he could do very little for himself. My mother remained his full-time caregiver for almost two-thirds of their forty-three year marriage.

Mom could be officious and cold as she went about her duties. She often barked at him, hissed at me, screamed at the world. This was all during a time before the concept of “self-care.” She would have considered a support group a ridiculous waste of time—after all, as a child in occupied Korea she had endured far worse including abject poverty and the horrors of war. A pathological penny pincher, she rebuked all suggestions to hire help. Besides, she argued, no one else could take care of Dad as well as she could. So Mom did it all, with breaks only when my older brother came home during his vacations to help. I was a kid and they didn’t think it appropriate for a girl to take Dad to the bathroom or change his catheter.

Dad, for his part, stayed upbeat, never complaining. He spent his days sitting at the kitchen table reading books and keeping up with current events. He never lost his sharp wit. Beneath the surface, though, lurked someone in deep despair whose vision of himself as a provider and man of the house did not square with this person he’d become, utterly dependent on his wife.

Not many people visited Dad. I guess wheelchairs bum people out. Also, our house always smelled faintly of urine leaking from his leg bag. But one visitor, on a rare drop-in, suggested Dad get out of the house. “He’s stuck at home all day, he might enjoy getting out.” They didn’t offer their services – just thought Mom could use the advice. A Sunday drive did not exactly fit into my parents’ schedule. Getting Dad in and out of bed, not to mention turning him in the middle of the night, preparing meals, bathing and grooming him was a full-time job. Then there was endless insurance paperwork. And phone calls arguing about deductibles. This relentless slog spanned six presidential administrations.

Keith received his leukemia diagnosis at fifty, the same age my dad became disabled. His disease has gone through many phases both in treatment and in character. He’s had all the therapies: chemo-, immuno-, and cellular. He must submit to frequent poking and prodding with regular blood draws, scans, and imaging. As the cancer evolves into an increasingly stubborn one, his body betrays him in new and creative ways. A dedicated hiker who had plans to walk the John Muir Trail, he is often unsteady on his feet, dependent on transfusions. His arms become a patchwork of bruises after multiple jabs. A fear of infection looms over u—put it this way, we were into masks and social distancing before it was cool.

Still there are periods when Keith’s disease remains in abeyance. If we’re lucky, he’s stable for a few months and we can enjoy our ordinary, conventional life: weekend brunches with friends, high school cross-country meets, college drop-offs. During these lulls, I recognize the funny, smart, and kind guy I married (even if, twenty some years on, he’s grown a tad grumpier and stuck in his ways). We bicker over choices for a potential kitchen remodel. Sometimes we give each other the silent treatment over a perceived infraction. We have long discussions in which we solve public policy concerns like campaign finance reform or single-payer health care. We argue over what to watch, until he eventually indulges me and we settle in with an old rom-com. Yes, we are a boring middle-aged couple.

But when the disease goes into overdrive, our life—our marriage—ceases to be ordinary and boring. Yet, it is still very much a marriage. Even if we didn’t realize it those many years ago in my parents’ living room, this is exactly why we marrie—to have someone with whom to share life’s challenges.

They say taking care of the person you love is an honor and a privilege; and with it come the rewards of comfort and deeper connections. It’s true, caregiving is intensely intimate and demands profound trust. Maybe a little too intimate: there is nothing a caregiving spouse does not know about their partner’s bodily functions and fluids.

Contrary to popular imagination, caregiving involves very little pillow fluffing, serving chicken soup, or sitting by the bedside holding hands. Caregivers, however, drive around. A lot. To appointments, to the medical supply store, to the supermarket to pick up a favorite comfort food. And so many visits to the drug store waiting in line for a prescription or scouring the digestive aids aisle for the ideal laxative. There’s the daily administrivia of running a household, managing appointments, and fielding queries from concerned friends and family. All of this is the easy part.

The hard part is the crushing weight of responsibility I feel for Keith’s well-being. Add to that near constant anxiety due to the uncertainty around his health.

I mourn the life we could have had. Instead of enjoying our empty nest and rediscovering ourselves as a couple, we are singularly focused on Keith’s health.

I miss my husband too. Even at his sickest Keith remains kindhearted. But the goofy and affable guy I married is now in perpetual distress. Instead of bad puns and riffing on his favorite “Portlandia” catchphrases, he might obsessively check his temperature fearing the next fever to send him back to the hospital.

A patient may put on a brave face for doctors and friends; with their caregiving partner they bare their deepest vulnerabilities. Keith can have an animated exchange with his oncologist as they analyze his latest lab results, volleying phrases like “minimal residual disease” and “mutation status.” As he engages in this gratuitous scientific banter and makes a casual reference to grad school and his days as a long-distance cyclist, I recognize Keith’s desperation to have others see beyond his damaged body. I also see his fears; with me he exposes his anxieties, speaking in a thin and feeble voice as he asks me to take a look at a new skin abnormality. That voice is fingernails on a chalkboard to me. But I try to take solace knowing that with me he can reveal his true self.

Perhaps most heart-wrenching is my sense of helplessness and inadequacy as I watch him suffer and know little I do will alter the outcome of his disease.

Yet I still dare to hope for a medical breakthrough. I strive to stay optimistic, encouraging Keith to take short walks and change out of his days-old sweatpants. I urge him to sit outside, feel the fresh air on his face, and listen to the birds sing. I know I must honor his autonomy, letting him face the illness on his own terms. At this I fail miserably. My encouragement comes across as tone-deaf and nagging. I cannot hide my disappointment and frustration when he lies in bed all day, curtains drawn.

Despite our closeness, a gap between us widens. At his sickest, Keith’s world gets smaller; as he withdraws he goes dark, leaving me to guess his needs. His sighs and moans lay bare his pain. I see him slumped over in exhaustion during a long morning at the clinic. Is he fatigued due to a dip in his red blood cell count or is he weary of his illness? Is his pain physical or psychic? What does it matter? Instead of empathetic, I can be detached and dismissive. Mom shouted from the rooftops about her struggles and frustrations; I keep things to myself, seethe with resentment and suspect Keith of overreacting. I often space out, lost in a complicated, yet somehow unselfish, plot to abandon Keith. I awaken from these reveries guilty and ashamed.

Our marriage has grown intimate in ways we never imagined. Together twenty-four hours, seven days a week, we are profoundly connected by our shared adversity. This is peak marriage. Yet we are both alone. Keith, isolated in his illness. Me, in my helplessness and my shame. We are alone, together, in our shared anguish, fear, and sorrow. We are husband and wife.

Share This: