‘When my father fell ill, I put my own life and health on hold to save his. It wasn’t easy’
Nine years ago my siblings and I decided it was time for our parents to live closer to family. So at the ages of 80 and 84, my parents moved from Fort Wayne, Indiana, where I grew up, to Princeton, New Jersey, where I live now. I was relieved to know Mom and Dad were getting out of the house, eating good food and taking the right medications.
They adopted a rescue dog named Bucket, made friends, and I swear they got younger in front of my very eyes.
But the fairy tale that I had written for my parents could not last forever. A year after moving, my father was struck with a life-threatening case of shingles, and the new life they had invented came to a screeching halt.
In my family we have always had frank discussions about the quality and end of life and the right to own those decisions. So when I realized that my father was gravely ill, I sat at his bedside and told him I didn’t think he would live through the night without emergency care, but that the decision was his to make. He said with clarity, “I’m not ready to die.” In that moment, I went from daughter to caregiver — one of almost 44 million U.S. adults caring for an older friend or family member.
In the weeks that followed, I had a front-row seat to the chaos many families experience as they seek to coordinate care for a loved one. It would be easy to assume that, as a doctor, I could navigate the health care system with ease. But I was as overwhelmed as the next person.
My medical expertise just fueled my exasperation. During the two weeks of my father’s hospitalization, I bullied nurses and aides when my father was in pain, fought the hospitalist when she told me she needed to send him home because the hospital count was too high, and slept on a cot next to his bed so he wouldn’t fall in the middle of the night.
When it was time for my father to leave the hospital, I spent hours interviewing aides, renting wheelchairs and commodes, and trying to figure out how to restore the 30 pounds my father had lost.
Caregivers tend to patients an average of 20 hours each week, but many would agree that it often feels like more. Like me, about half are also balancing that responsibility with a full-time job.
During the tough times I, like so many others, forgot to check in with myself. Within months I had put on 15 pounds, was sleeping five hours a night and was just emotionally raw. I didn’t know then what I know now — that caregiver burnout is real and that the stress of caregiving comes on like a full-frontal assault.
It was time to give myself permission to step back into my own life. I called on my siblings to come to town and rotate care with me. I stopped overeating and started exercising again. Perhaps the most important lesson I learned in all of this is how little we plan for the inevitable crises — and how much we all need help.
My father died of a heart attack three weeks shy of his ninetieth birthday. The fact that my siblings and I got to share so much of his care, and the gift that he gave us by being so explicit about his wishes, allowed us to be a part of his journey until the very end. He gave us the tools and the freedom to be the best children we could be and by doing that we were able to honor him. I can’t think of anything that is more important than that.