- When my mother came home from rehab at 97 to recover from pneumonia, I became her caregiver.
- I took care of her for three years. I loved her dearly, but it also burned me out.
"I'm free."
For three years, I imagined that would be my reaction when my stint as caregiver to my 100-year-old mother came to an end.
But to my surprise, coming and going as I pleased became foreign to me during the years I was taking care of her. When she was gone, I had to not only relearn how to get up and go but also find a reason to want to.
Taking care of someone you love can be complicated
People think job stress can be caused only by dealing with unpleasant colleagues, and burnout is primarily thought of as a product of continuing to do something you hate. But those things can also happen when you're in the company of someone you care for deeply and doing something good.
The one in five Americans who care for older or disabled friends and family members know this push and pull all too well.
In 2020, my 97-year-old mother, Angelina Duffy — who lived across the street from me in Manhattan, New York — was fresh out of rehab after a bout of pneumonia. I thought it was best if she stayed with us for at least a week as a precaution.
Neil, my husband of 35 years, put his hand on my shoulder and said, "She can't go back to her apartment." So right before lockdown, my mother moved into the former bedroom of my 28-year-old son, Luke.
Because of the pandemic, I had a full house. Besides my mother, Neil and my 25-year-old daughter, Meg, were working from home. Luke had also moved back to New York after two years of working in Silicon Valley, and he settled into his grandmother's now empty apartment across the street, joining us for meals.
As a freelancer for three decades, working from home was nothing new to me.
I actually liked the hustle and bustle of our new living arrangement, and my mother was happy to be with us. She ate what we ate, watched TV with us, and liked to sit peacefully in her bedroom to wind down before bed.
I didn't realize what I'd truly agreed to until a year later
I didn't feel the weight of caring for her until 2021, when things started to open up. Everybody else went back to work at the same time her dementia kicked in full force. Her health began to fail, so she required a special diet and needed help with dressing and other tasks.
With no one else around, I could not go out unless my mother and her wheelchair were in tow. I was a woman in my 60s, and pushing a total of 150 pounds over New York City's cracked cement sidewalks — often uphill — was difficult. It was easier to stay in and have things delivered. The only time I could go out by myself was if my husband or one of the kids agreed to stay with my mother.
Even though Neil and my mother had always had a good relationship, and Luke and Meg loved their grandmother, I felt as though taking care of her was my responsibility. I undertook it gladly. She was a single mother who first took care of me and then helped Neil and me take care of our children. Unlike a lot of Manhattan kids, Luke and Meg had their granny as their nanny.
Thus, putting her in a facility did not feel like an option for us. Neil often spoke of having someone come in to help me, but the reality was that my mother wanted no one but me. This was never more evident than when I left the house and another family member looked after her. My time to myself was always cut short because one of them would call and tell me she was asking for me and wouldn't eat anything unless I was there to give it to her.
I quickly learned that caregiving for an adult was nothing like caring for my two children. With kids, there's a feeling of positivity because you're teaching them to take care of themselves. You watch their progress, watch them move on and thrive.
Taking care of older people is the opposite. It's about keeping them company and comfortable until they die and living with the knowledge that no matter how well you care for them, they'll never get better.
I did not feel the sense of freedom I'd expected
By the time my mother died in early 2023, I was so burned out I couldn't even cry for my loss. I also could not feel excited about my newfound freedom.
In fact, I'd forgotten what it was like to be free. Though I was suddenly able to come and go as I pleased, I usually didn't. I continued doing things around the house and watching television because that's what I was used to.
The unhealthiness of that routine was not lost on me. I had to push myself to go out each day and get air, stop myself from ordering in food or groceries, and go outside just to get moving. My first taste of freedom was not just uncomfortable but bewildering.
The first time I went out without her was difficult
A week before my mother's memorial service, Meg and I went from our Upper East Side home to a Michaels craft store on the Upper West Side for poster boards so we could create a photo collage of my mother's life. Upon arrival, we found that the store had closed. Meg Googled another location for us to go to, which was all the way down in the Chelsea area.
"Quick, get a cab," I said. I was still on caregiver time, always rushing through activities to get home.
Meg questioned what my hurry was. "The bus stop is right there, and the bus is coming," she said. On the ride downtown, she chatted away. I only half listened because I was preoccupied with my disbelief that I was taking a leisurely bus ride.
When we reached our destination, Meg announced that it was lunchtime and we should eat before getting our art supplies. I hesitated but then remembered I didn't have to get home. We went to Cafeteria, a restaurant often featured on "Sex and the City." Unfortunately, I spent the whole meal constantly checking my phone.
"Are you waiting for an email about a freelance assignment?" Meg asked.
I said yes because I was embarrassed to admit I was checking the time every two minutes — a habit I'd picked up whenever I was out and about when my mother was alive — to make sure I wasn't gone from her for too long. Old habits die hard.
We finished our lunch and got what we needed from Michaels. By the time we got home, it was almost dinnertime. I could not believe I had been out of the house that long.
I sat down in the living room and looked around. For the first time, I actually saw my furniture, my bookshelves, and my knickknacks for what they were instead of as part of the prison I had created for myself in my effort to be a good daughter.
Now it's nine months later, and I wish I could tell you that freedom is once again natural to me, but the stress and burnout that evolved over the past three years lingers.
I still have to make an effort to get up and out of the house and accept invitations to places that would let me just be out in the world — one I missed sorely when I was taking care of my mother and one that's hard to live in without her.