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Helping my dad age in place at the end of life was the best way to honor his wishes and spirit

Helping my dad age in place at the end of life was the best way to honor his wishes and spirit

“Don’t ever put me in a nursing home, Lee,” my father said one Saturday afternoon as we finished bagging up the fresh grass after mowing the backyard lawn.

“Oh, OK, Dad,” I said with a chuckle and an eye roll.

He had taken to sharing this sentiment occasionally over the course of my teen years — always with a quick laugh, his trademark half smile and then a shake of his head.

Years later when I was a young mother of two boys, he and Mom had begun to slow down. His mortality loomed larger. “Remember I sent you to college and grad school, too, just like you wanted,” he quipped. “I don’t want to go into an old age home.”

He said it, jokingly, as if taking care of him would be payback. This time, I didn’t laugh.  “Right, Dad. I know.”

My parents still lived in my childhood home, a yellow and brown colonial. Over the years, they had done updates to the house — bathroom renovations, new carpeting in the upstairs bedrooms — but it remained largely the same. Mom and Dad enjoyed their privacy and the fact they owned their home outright.

“Even with property taxes, it’s cheaper than any other place we could live,” Dad liked to remind us. The backyard had a rolling hill and shade from mature trees, which were in need of a trim. Gardens outlined the fenced-in yard with perennials intermingled with whimsical statues like a girl and boy kissing on a bench and another of a long-bearded gnome sleeping.

When Mom received her ovarian cancer diagnosis, Dad shepherded her care. He focused on her recovery by keeping up with her doctors, “her numbers” and learning everything he could on the internet about ovarian cancer survival rates, chemotherapy treatments and various medical and behavioral therapy options for anxiety and depression. 

My sisters and I urged him to take time for himself and check in with his doctors. We offered help and suggested enlisting other caregivers.

 “We are in the fight for your mother,” he said with stiff shake of the head. “It’s not about me.” 

Fighting cancer is a long-rutted road, and as Mom went through surgery and several rounds of chemotherapy, they experienced the euphoria of remission (“No evidence of cancer!”) to the depths of clinical depression and high-wired anxiety. 

Dad wanted to remain a rock for Mom, but he began to crumble. A wheezy cough settled into his lungs, reactivated his pulmonary fibrosis and taxed his already bypassed heart. His gait shuffled from the nerve damage that caused floppy foot syndrome, which had resulted from a ruptured disk and subsequent back surgery years before. His breath labored and his foot dragged more as he tired.

Finally, he went to see his general practitioner who ordered an X-ray. Pneumonia showed up on the film, but he refused to go to the hospital until he could barely suck in air. Numerous hospital stays followed with a team of cardiologists and lung specialists who ordered an oxygen tank for the pulmonary fibrosis. 

I shuttled from my house to my parents’ house with my middle school-aged son and my older high schooler. My sisters and I took shifts, each of us going to appointments as they visited more doctors and got more diagnoses. The specialists took days and multiple phone calls before they conferred with each other and communicated to us.

“We will do everything, Dad. We will do everything you have done, and we will get help if we need it. I promise,” I said.

One day, as I drove Dad for a follow up X-ray at the outpatient radiology center, the sucking in and out squelch of the portable respirator reverberated in the car. He scuffled in front of me, up the concrete steps and through the door, and I placed my hand on his blue-jacketed shoulder to guide him.

“I can go back by myself,” he said with a shake of his head as we sat waiting. Dad gave me his half smile along with a shrug and stood when they called his name. I watched the back of his full head of white hair and slumped shoulders walk through the double doors with the portable respirator tucked under his arm.

Now, double pneumonia and congestive heart failure were coupled with constant back pain. The breathing machine became an omnipresent sound in the house. Red and white signs dotted the windows — Danger/Oxygen Storage/No Smoking/No Open Flame — and the nose pick attached to the clear oxygen tubing constantly slipped down his nose and reddened the surrounding skin raw.

Mom entered remission, but the stress of her journey had eroded Dad and ushered in the return of her crippling depression and anxiety. She could only find thin shafts of happiness surrounded by threat of cancer’s return. Then, Dad had a fall, which they failed to mention to us. Then came another fall and a day lost in the black hole of the ER where we waited for doctors to pull the curtain open and spend scant minutes before ordering more tests.

“Maybe it was the sleeping pills or the pain meds that caused him to fall,” the doctor said. “Maybe it’s a drop in his blood pressure when he stands.”

Stumped, they sent us home with a handful of prescriptions and instructions to make follow-up appointments with more doctors. Soon another fall led to a trip in an ambulance to the trauma center. Blue black bruises covered his face so badly he did not want his grandchildren to visit. Transfer to a cardiac rehab center was recommended. It would be a safe place for him to go until we could set up home care with visiting nursing. Fear gripped him. He refused to go.    

“I am going home. Remember you agreed you would never ever put me in a nursing home,” he said. 

“Dad, it’s just a few weeks of rehab,” I said.

“No, I want to go home to be with your mother.”

So we hatched a different care plan — home heart monitoring, nightly home care from a caregiver service and a hospital bed in the downstairs den. The home health aide watched over him until dawn to ensure no more night falls. 

He despised the process of weighing each morning and sending his vitals over the phone. He and Mom did not like “having strangers in their home,” but they complied. It was for them, the lesser of two evils. My middle sister and I rotated shifts — staying in the day and into the evening until the night caregiver came. On Saturdays, my other older sister arrived with her husband for the weekend shift.

Then, one chilly evening in late autumn, their heater broke. The house temperature dropped into the 50s, and my mother canceled the home health aide’s visits because she did not want her to work in a cold house. 

“Your father will be fine. I will stay up,” she said.

“No, Mom. You are too tired, and he has fallen too many times,” I said. 

That night, I stayed awake in the darkened kitchen steps from his bed watching movies on my computer. My mother slept upstairs. Dad woke in the night and sat up in the bed. I went and settled beside him.

“I’m so tired,” he said. 

“I know, Dad. I am here.” I hugged him. He felt small and soft. Not like the man I had known all my life. Not like the methodical engineer who solved work problems while he slept, a man who pushed through life like an ultramarathoner.

“My systems … they are falling. My lungs, my heart, next will be my kidneys, you know. Do you understand?” 

“I do,” I said. “I understand.”

We sat in silence for a moment.

“I don’t want to live this way…but your mother. I have hung in for her.”

“I know, Dad.” Then, after a moment I said, “It’s OK. We will take care of Mom.”

“She can’t do it herself. It’s too hard. We have always done it together.” He shook his head. 

“We will do everything, Dad. We will do everything you have done, and we will get help if we need it. I promise,” I said.

I held his hand in the shadowy room.

“Thank you, Lee.” 

I propped his pillows. He laid down and slept. The portable heater whirled in the nighttime silence. A string of movies I absently watched played until dawn. 

The heater repairmen fixed the furnace. Yet, Dad could not get warm. Within days, he died. Ever the pragmatic man, I knew he did not want a protracted fight for his life. He chose to move on to whatever was next for him. 

By helping Dad stay at home, my sisters and I honored his wishes, his spirited personality and his life. We helped him to control his destiny as best he could.

As if on fast forward, the events following his death blurred together: calls to the doctor, the funeral home and to extended family. The medical supply company dismantled the bed and removed the oxygen tanks. A quiet settled over the house. 

Then: A wake. A mass. A burial. But never a nursing home. 

Lisa B. Samalonis is a writer and editor from New Jersey. She frequently writes on parenting and health topics and has published articles and essays in many publications including ShapeGrown&Flown, and The Philadelphia Inquirer, among others. She is at work on a memoir about life as a single parent with her sons. 

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