When the summer heat turned the air in Philadelphia to molasses, my mother would pack up a large green tent and five children and head for a campground in the Poconos. My father hated camping. He’d had enough of it in the Philippines during the war, he said, and in any case, he had to work. While our life blossomed – exploring the woods, playing shuffleboard, and lolling about the swimming pool – Dad was at home tending the poultry shop.
He would visit for a few days, opting to stay in a cabin. We kids would steal showers there, and all would join him for dinner in the campground dining room rather than eating round the campfire. We loved having him with us. When he relaxed, the more curmudgeonly aspects of his personality disappeared. He enjoyed swimming and joined us at the pool most days.
Todger, willy, goollies, family jewels, pecker: euphemisms disentangle us from the earthy parts of life we find threatening or confusing.
One afternoon when I was about seven, I was sent to the pool’s changing room to deliver Dad a message. I raced in and nearly ran into him toweling dry. He was stark naked. At home, I’d watched Dad head to the bathroom with a towel slung ‘round his neck, clad only in tidy whites and carpet slippers. But this was my first view of an adult penis and scrotum — an apparatus with the awe-inspiring aspect of a human shillelagh.
Todger, willy, goollies, family jewels, pecker: euphemisms disentangle us from the earthy parts of life we find threatening or confusing. We spend a penny, see a man about a horse, go for a slash or tinkle. We toss our cookies, barf, blow chunks, speak to the great white telephone. Ultimately, we kick the bucket or peg it. The deeply personal and primitively physical aspects of our lives are veiled in tangential images.
If you have ever watched a mother scoop snot out of her two-year-old’s nostril using her little fingernail, you know that family life is where we first experience physical and emotional closeness. But the grotty attentions usually flow one way, parent to child, and we receive them less and less as we grow older.
Ours was a busy, cluttered household, and growing up produced, for me, few intimate Dad-memories; he worked long hours. I remember sitting on his lap while he drew. I also remember being taken to work on the day he opened his own poultry shop. During a walk one Sunday, he smiled as he turned from my bevy of sisters crenelated with walking sticks to point his camera at me only. Somewhere, either in my memory or a drawer, is a small black-and-white photograph of a little twig of a boy beaming for the camera in Wissahickon Park.
Dad had four brothers and a much-loved younger sister. He was predisposed to cherish my four sisters, I think, while regarding me — his only son until I was fourteen — as a mild rival. There was no nine holes at the golf course, no sitting together in the bleachers at baseball games, no sharing of a cabin on hunting trips. The only session of paternally-inspired sports activity I can remember involved throwing a football with him, in my early teens, on the trolley tracks next to our house. Each of my throws or catches was punctuated with advice. I have a hunch that the trolley-track football toss was someone else’s idea: a doctor, a psychologist, a friend, my mother. Go. Do some male bonding. Bolster your son’s faltering, fledgling masculinity.
I dropped out of high school in tenth grade and joined Dad as a clerk in the shop, where the conflating of the role of father and boss gave full flower to his relentless honesty and his personal brand of perfection. His two maxims for his “Think” and “Don't think,” were handed down existentially, dependent on the situation. As son and employee, I received a double helping of admonition and instruction. I learned quickly that a) I did not want to work in a shop and b) I did not want to work for my father. But work I did, before and during two years of art school and later, when returning from studies in England and through the first years of married life.
Eventually, another stint of studying in Europe – and years of living in England – corralled our relationship into the pleasant haze of periodic letters and, most years, a bracing two-week visit.
Dad, whose parents died in their forties, never expected to survive beyond fifty. Yet fifty came, then sixty, and seventy. When an opportunity to work in Lancaster County in Pennsylvania appeared, my wife and I returned, to be closer to my parents. A year after moving within ninety miles of Dad, he had a heart attack, followed by a quadruple bypass operation and a diagnosis of orthostatic hypotension, which means this: Stand up, and your low-pressure blood travels to your feet – on an unlucky day, you keel over. Finally, there was also a diagnosis of Parkinson's Disease.
My parents left their house in Philadelphia, with its steep unclimbable steps, and came to live near us. We eventually bought a house with two living spaces and a door between adjoining lounges. In the course of four years, we went from living 6,000 miles away from each other to living under the same roof.
Dad was a tall man, but long-term curvature of his upper spine had brought him lower, and the hunched-over posture of Parkinson’s gave him the silhouette of a hockey stick.
Dad’s health took a meandering course through ups and — mostly — downs. You don’t die of Parkinson’s. Over time, you seize up. Shaking, rigidity, and slowing of movement translates into difficulty with walking, with bodily functions, and with handling even the most rudimentary of objects. Cognitive and behavioral problems emerge, and dementia often accompanies the advanced stages. Dad was a tall man, but long-term curvature of his upper spine had brought him lower, and the hunched-over posture of Parkinson’s gave him the silhouette of a hockey stick. He refused to use a cane, and tottered alarmingly from chair back to table edge before finally accepting a walking frame.
After a bout of congestive heart failure, Dad moved from the hospital to a nursing home. It was clean and tidy, and the medical assistants, though overstretched and not very well paid, handled their jobs, as a whole, with aplomb. The food was perfect for someone with borderline diabetes and heart problems, bland and unmemorable.
Auditory hallucinations, which had briefly appeared at the time of Dad’s heart surgery, perhaps drug-related, perhaps stress-related, returned, and visual hallucinations commenced. Dad began to loose his ability to complete daily tasks. The staff added an alarm to his chair to keep him from heading to the loo on his own and risking a fall. This brought on periodic incontinence.
I visited him most evenings, usually picking up a small milkshake on the way or finding a root beer in the staff vending machine; it did not seem to affect his blood sugar. We would share his news of the day, the goings on, real or unreal, in the room or the corridor. I found myself starting to provide intimate care. Instead of waiting for Patrick, Dad’s main nurse, or one of the aides, we would make the trip to the bathroom on our own or, later, start the process of getting ready for bed, changing into Depends and pajamas.
I have never liked baby bottles, that squat, comic-book-industrial burlesque of one of the most intimate instruments of maternal nurture and feminine allure. Baby bottles can fill me with a squeamish angst, but it’s nothing compared with my feelings for false teeth.
Aside from her great age, there was little that might provoke the sweating of palms or the loosing of bowels — except her teeth.
In my adolescence, I was sent to the country to stay with a family, whose elderly aunt we would visit periodically. A small, wizened woman, she wore the dark dresses and white head covering of a traditional Mennonite. She was as pleasant as the rest of the family. Aside from her great age, there was little that might provoke the sweating of palms or the loosing of bowels — except her teeth.
Perhaps they had fit once, when she was younger, plumper. Now, they seemed to have a life of their own, brought under control only by the snapping shut of her jaw. Eating, smiling, or any facial contortion brought a sucking, slapping sound, as she reigned in the teeth. They looked much newer than she, less abraded by life, flashing pink and white, brazenly pressing forward against her lips only to be yanked back as she gained control with a pop and a click.
I could avoid her for most of the day, but the round dinner table meant an unobstructed view of auntie and her teeth. My previously mild distaste for false teeth went stratospheric.
Dad had false teeth. They lurked, when they weren’t in his head, in a white teeth-shaped plastic container on a shelf in the bathrooom.
In the nursing home, I learned to ferret around Dad’s warm and tender mouth and extract his false teeth, usually accompanied by threads of clear mucus and bits of dinner. I would take them to the sink, scrub them, and place them in the container, ready for the next day. An event which once would have brought sweat to my brow and trembling to my knees became mundane.
I grew accustomed to seeing my father’s dangly bits, too, remarkably unchanged since I’d first glimpsed them all those years ago. I learned to hitch up trousers and zip a fly that wasn’t my own. I learned to smooth shirts over shoulders and to comb hair.
The nursing home could have been the last stop for Dad, but he was grossly unhappy. We attempted to maneuver support to bring him home, believing that he would feel calmer and happier in familiar surroundings and that my mother, in her mid-eighties, shouldn’t be driving to visit him daily through all weather. Dad needed help with most of the daily tasks, but my work was within ninety seconds of our backdoor and, with the possibility of employing aides through a state-funded program, it seemed doable.
Initially there was an uptick. Dad got back some of his life skills. But I am sure we were not the first to watch the trajectory of an illness outstrip the support we could muster. Then Mum had a stroke. It did not affect her mentally, but caused balance and manipulation issues on the left side of her body. Caring for both of them became pressured and intense. My twin sister took a leave of absence and moved in. Another sister within driving distance helped on a weekly basis. With a little more state-funded help, we became Dad’s caregivers, lifting the responsibility entirely from Mum’s shoulders.
When we were growing up, Dad had spoken of his experiences as a teenage draftee in the Second World War only obliquely or in little vignettes: coming face to face with a tarantula when in a palm tree stringing wire; earning pocket money by running a laundry; listening, as a switchboard operator, to the incoming lines blink out as a Japanese offensive swept forward. But as Dad’s hallucinations increased, he began to talk of his first breakdown – the one that no one knew much about – brought on in part by his ambivalence about killing people. The Army had shipped him off to the Philippines as a private in an artillery battalion. Mother knew that he had been discharged early for health reasons, and he’d talked of problems with his ears. But during the quiet and tedium of our caregiving, as Dad’s auditory and then visual hallucinations increased, he spoke of what had really happened. He had chosen to sleep in an empty grave in a cemetery; it the best shelter from bombings. He saw faces in the walls of the grave. The Army doctor sent him to a sanitarium, where he was given cold baths and returned to service. When symptoms recurred, he was given a medical discharge.
Some of the hallucinations which now accompanied him were dream-like: monkeys climbing in the trees outside his window or a car shaped like a fish. But some were hum-drum. He often found himself back in his poultry shop, worrying about orders he could not satisfy and bills he could not pay or looking for money he could not find.
The son of an alcoholic father, Dad had prided himself on his independence. He had protected his intentions and personal space, and he had often expressed irritation with deviations in schedules or loss of control. But as his life became a caricature of dependence, what flowered was a calmer, more grateful man. Knowing that he needed to be cared for, he chose to be grateful. We heard, I think, more “thank you’s” in the close of his life than in all of the preceding years combined.
In his final illness, I began to understand our tough, roustabout, relationship. I became a surrogate for his brothers, particularly the one with whom he had worked and whom he had lost to cancer a number of years earlier. When in the process of showering or toilet maneuvers, he would at times call me by my uncle’s name. I learned that there was more than rivalry to their relationship and, by extension, to ours as well.
Dad’s daily delusions shed light on his life’s priorities. It became clear how much he had felt the burden of providing. It is not surprising that someone whose father had failed at provision should struggle alone, until released by illness from the silence. We learned not to try to allay Dad’s fears of scarcity but to acknowledge and live with them. We developed a measure of patience, living in the shadow of his fear and walking repeatedly down paths of imaginary poverty.
We learned how to deal with a roller coaster of constipation and diarrhea brought on by medication and aggravated by his distaste for drinking lots of liquids. We learned how to take blood pressure, check blood sugar, give suppositories.
The dementia undulated. At times, he could be clear and coherent. I was helping him use the toilet once, and as I sat on the floor, resting from a particularly tough time of getting him there, he came out with an almost song-like string of nonsense. “Dad,” I said, “I have NO idea what you are talking about.”
He laughed. “Neither do I.”
Such moments of connection stood out like stones in the silt of caregiving, the sludge we waded through while trying to maintain our busy lives. There remained, even in the most difficult times, flashes of enjoyment. Dad almost never lost his appetite for ice cream or milk shakes.
His congestive heart failure turned out to be a gift, in a way. Drugs can slow down Parkinson’s, and operations can mitigate the symptoms, but there is no cure and, in an often meandering arc, your body crumples out from under you.
Dad slid deeper into confusion, and when he got a chest infection, we decided, with the help of hospice, not to treat it with antibiotics but to let it take its course.
In the last week of Dad’s life, there were, for me, no revelations or insights. It was too late for that. It was more like waiting with an old friend for a bus to arrive. I was out with my twin sister, meeting with a funeral director to set in motion preparations to pay for services when a phone call told us he had gone.
In his last illness, he became more than a father to me; he became a human being and then, in the deepest sense, a best friend. This is dangerous ground, because it opens one up to a loss unmedicated by distance or time or lack of familiarity. Dad was no longer the irritatingly omnipotent figure whose approval I both craved and rejected. He was no longer someone who needed to be obeyed or ignored. He was a young man, cowering in a Philippine grave, wracked with fear, far from the north Philadelphia neighborhoods he’d known and loved. He was a father striving to provide for his family and keep his fragile dignity. He was a husband struggling to relate to a wife whom he, unaccountably, both feared and admired. He was an old man in a chair coming to grips with the loss of much for which he had struggled.
I did not mourn his passing. I did not celebrate his new life with a savior he’d revered and feared. It had been so obviously time for him to go that I simply couldn’t have imagined his remaining.
"Who is the caregiver?" is a question often asked at the point when a family seeks help. The term, “caregiver,” is both specific and incomplete, exact and vague. We know what we mean, but not in precise terms. In the case of my father, there were many caregivers and at times, perhaps, some in that role who did not deeply care.
This is, in the end, a love letter to and for those who care for the old and infirm, both those who care for loved ones and those who do it for little pay and less recognition. You struggle with getting beyond the symptoms, the physical reality of confusion and mucus, medication, sweat and poo. You labor to unpick deeply felt experiences from the morass of physical breakdown; significance is obstructed by the clatter and chatter of random thoughts and memories. You reach to catch the butterflies, the meaningful events, while at the same time searching for those mislaid eyeglasses yet again. You try to impart dignity in a time and place that has, by its very nature, little to offer in that regard. You often do it against the wishes of those adrift in a situation not of their choosing or beyond their comprehension. Thank you for what you do. Thank you for continuing it. God bless you.