The night before I took my father home from the hospital, I sat in a room full of doctors and tried my hardest to convince them that I was capable of being his caregiver.
I was twenty-five years old and my father, who’d had me late in life, was eighty-three and dying of prostate cancer. My mother had been dead for seven years, and with just a few disengaged half-siblings on the other side of the country, there was only me to care for my last remaining parent.
At the hospital a social worker tapped her pen skeptically and one of the doctors sighed audibly. “I really think you should consider a skilled-care facility,” he said.
Before I could object, the social worker spoke up. “I don’t think you realize what a big undertaking this is,” she said. “It’s a lot for anyone, let alone a twenty-five-year-old on her own. Your father is very weak.”
I cleared my throat and swallowed the bubble of fear lodged there.
“I’m going to take him home,” I said firmly.
My father looked up hopefully.
I will not cry, I whispered silently to myself over and over. I gritted my teeth and cleared my throat again, just to buy time. If I thought I could have gotten through it without breaking down I would have told them about my mom. About all the years that we’d been through. About how I wasn’t there for her when she died.
“I can do this,” is all I managed to say instead.
The truth is that thousands of Americans become caregivers every day, and very few of us realize what we’re getting into. Just as the social worker had warned me, caregiving is a vast undertaking that requires not just emotional endurance, but also intelligence, patience and even physical strength.
The months I spent caring for my father at home before he died were some of the most challenging of my entire life. Within days of arriving home he was completely bedridden and my daily duties consisted of everything from cooking meals and managing his medication schedule to emptying his urinal and scrubbing his dentures each night.
The doctors and the social worker had been right: I was completely unprepared for how difficult the task of caring for him would be.
While my friends went about their post-college lives trying out new jobs and romances, I found myself waking up at 3AM regularly to give my father medication or adjust his position in bed. I slept with a baby monitor next to my pillow, scrambling out of bed on the nights when he woke confused or in pain.
I became so attuned to his needs that, after only a few weeks, I didn’t trust anyone else to do the job for me and I rarely left the house. I became depressed and irritable and often wondered if I had made the right decision.
I did all of this, though, out of a desperate love for my father. In the years since my mother died we had grown particularly close and I was determined to be there for him in his final days.
However, amidst the quiet afternoons in which we held hands and said the things we needed to say to each other, there were also days filled with frustration and anger. I was exhausted, more stressed out than I’d ever been and, at times, hopeless.
I didn’t know anyone my age who had been through something like this and, over and over again I failed to reach out for help. I read a statistic recently that said that 34% of caregivers are over the age of fifty, as opposed to the 5% who are under the age of thirty. It had never occurred to me what my aunts and uncles and friends’ parents were going through when they spoke of caring for an elderly or ill relative, but it’s something that I now recognize as incredibly brave.
In some ways, I was spared a harder path. My father only lived for a couple of months after he came home, relieving me of my duties, but also of my only parent. I scarcely knew who I was after he was gone.
For over a year I had dedicated myself to his care, in and out of hospitals and at home. I had memorized his social security number, medical record number, the twenty medications he was on, the exact dates of cancer diagnosis, pacemaker implant and radiation sessions.
In the months after he was gone, it wasn’t just his death I mourned for, but my very identity.
It’s now been almost eight years since the warm summer evening when I held his hand as he took his last breaths. I have since become a hospice grief counselor and worked with countless families as they have struggled along the same path I once did, and I have also become a wife and a mother, both roles that would have been helpful to me all those years ago.
I think often about the millions of people across the country who are, at any given time, caring for a loved one.
For those of you out there who are undertaking this role, or who someday will, know this: You are not alone. The biggest mistake I made was not reaching out enough. Although I will always be proud of my decision to take my father home and care for him, I know that I could have taken better care of both of us by seeking support along the way.
There are countless organizations and services designed to help people care for their loved ones. Here are a few: