I’ve talked before about how accepting help from others benefits those who give the help as well as those who receive it. When I was my late husband’s caregiver, I was giving help on a large scale—and I was receiving the benefits of that on a large scale, too.
I spent most of the last year of my husband’s life taking care of him. The entire left side of his body was paralyzed. Without use of the left side of his body, he couldn’t roll over in bed or get dressed or undressed. I woke up several times during the night to reposition him in bed, I dressed and undressed him every day, I helped him sit up, get out of bed, go to the bathroom, and move from his wheelchair to the bed or vice versa.
I also had to take into account the cognitive impacts of his stroke. His speech was slower than before the stroke and his memory was undependable. He also had a mysterious condition called left neglect in which his brain didn’t process anything that happened to the left of his midline. He would start reading from the middle of a line of text because his brain didn’t process the left side of the page. He would eat all the food on the right side of his plate and ask for more, even though the left side his plate hadn’t been touched. I had to constantly remind him to look to his left.
It was a lot of work. Caregiving is never ending. Those facts are true, but what they don’t capture is that it can also be intensely connecting. I was exhausted AND I savored every moment that I got to care for him.
Many people have said to me since my husband died “I’m sure you miss him but don’t miss the caregiving,” but in his last year, the two were inseparable. Being with Tom meant always being on alert for him dropping his phone, losing track of something that was right in front of him because it was slightly to his left, having a sudden urgent need for the bathroom, becoming disoriented and anxious. It was hard for both of us. But when I remember him, my mind goes first to those memories—because it wasn’t only hard for both of us. It was also incredibly intimate and connecting.
Our communication skills got gold-medal good. We really learned what it means to ask for what you want, to not take each other for granted, and to not expect your partner to be a mind reader.
I recently read a book by Sarah Smith Rainey called Love, Sex, and Disability: The Pleasures of Care that moves beyond the exhaustion and exploitation of (mostly female) caregivers and addresses how much true pleasure can be involved. Rainey studied married couples in which one partner was the caregiver for the other. Rainey’s research is groundbreaking because her research looks at the experience of the cared for as well as the caregiver. Typically caregiving relationships are assumed to be one-sided, with the caregiver doing all the work and the cared for doing all the receiving. In fact, many of the couples Rainey interviewed reported that their relationships were reciprocal, which is what I found with my late husband.
He allowed me to take care of him, which is much more complicated than it sounds. As you can imagine, going from his pre-stroke state of being fiercely independent to his post-stroke state of needing the level of care I described above was a huge adjustment for him. I was amazed at the grace he exhibited in accepting the shift. Rather than stubbornly resisting my caregiving—which, frankly, is what I expected him to do—he put his energy into showing appreciation all day every day for my caregiving. That was how he took care of me.
The experience helped me make a commitment to my daughter: if/when I need caregiving at some point in my life, I will be as graceful and accepting of it as Tom was. I got to practice that commitment last fall when I had brain surgery and my daughter took care of me for a week. She had to remind me a few times of my commitment, but I did ok overall, and it actually got easier each day.
Most of us who live long enough will find ourselves in need of caregiving at some point. We can make it a nightmare for everyone by being stubborn and refusing to accept help or we can receive the help gracefully.