Part 1 of 2 As caregivers, our lives of service are trying. We give and give until we think we can’t give any more, then we keep on giving. It seems impossible at times, but, for the estimated 53 million family caregivers in this country (according to caregiving.org), it’s all worthwhile because we’re caring for a fellow human being in need, helping a person we love have the best life they can have under the circumstances.
Caregiving is relentlessly hard work and it can take a steep toll on the body, mind, heart and spirit. If we don’t take good care of ourselves, we can’t take good care of our loved ones. It’s that simple. It’s always a dance between their needs and ours. How much do I give? How much can I give? How much should I give? The trouble is, we don’t always have a choice in the matter. Often we are the only one around and, so if our caree needs our help, we help. We do what must be done, even when we feel worn out or used up. I’ve known caregivers who are lucky to carve out half an hour a week for themselves. That is not sustainable, and it can even be fatal. Some 30 percent of all caregivers die before the person they’re caring for.
I was caregiver for my late wife, Alice, for 20 years. When I met her, she was using a walking stick. A month later, she nearly fell down some stairs. I jokingly asked if she was drunk. “No,” she said, hesitating. “I have a rare, neuromuscular disease called spinocerebellar ataxia type 3.” It was her “family disease.” Nearly all her relatives had, have or will have it. Her grandmother died from SCA-3 at 62, her mother at 60. If I wanted to be with this woman I loved, I had to accept both her and her disease.
It wasn’t hard at first. Alice could still teach college, still drive, write, paint, travel, live a full life. Two years later, though, she fell in our living room and broke her leg. Things went south fast after that. She got a service dog, which helped when she dropped things. She started using a walker, which helped with her balance. But she kept falling and breaking things more often, including bones. In time, she had to quit her job, stop driving and start using a wheelchair. My job as caregiver got more and more demanding. Alice tested me as I’d never been tested before. There were days when I thought I might become one of those millions of people who suffer death-by-caregiving.
Like many in my position, I had my own physical issues. I had suffered a spinal injury at age 12, developed osteoarthritis at 40 and had had multiple surgeries on hips, knees and feet. Caregiving exacerbated my injuries in ways that often required chiropractic visits, physical therapy and other treatments just to keep going. I got so stressed out at one point that I vomited blood. On another occasion, I had to be airlifted and hospitalized after a transient global amnesia event. I fought the occasional urge to drive off a cliff or into oncoming traffic. I sometimes feared I would tumble into the abyss of exhaustion and despair and never return. But love always called me back from the brink and empowered me to carry on. My beloved loved and needed me, and I loved and needed her.
Yes, I was just as dependent on Alice as she was on me. She was my lover, partner, wife, collaborator and best friend. As disheartening as it was to watch her lose her mobility and many of her abilities and gifts, serving Alice was my school of hard knocks, my way of learning some of the toughest lessons we humans can learn, lessons we must learn if we are to shoulder the mantle of caregiving. Chief among those lessons is compassion, for without compassion there can be no caring.
We tend to learn those lessons the only way they can be learned: the hard way. They’re lessons all of us must learn, though. As former First Lady Roslyn Carter famously said, there are four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. When we are placed in a position of caring for another person, we don’t set out to intentionally sacrifice our time, energy, personal health or ambitions. No one wants to quit their job so they can stay home and work for free. No one wants to be pushed to—or sometimes beyond—the limits of what we think we can endure. Most of us do not willingly put ourselves in situations in which we are likely to be under-appreciated, criticized, verbally (and/or physically) abused, or emotionally and physically exhausted on a daily basis. Unless we’re masochists or paid caregivers, most of us would never submit to such treatment from anyone other than a loved one. But that’s what many caregivers must do.
When it was no longer safe for me to leave Alice home alone, I started a tutoring company that I could run out of my home office. Business dried up d
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