I wake up from pleasant dreams that I can’t remember, but I do know I felt good in them. Slamming awake I realize that it’s still there, the reality of my life. My husband, Jim, has a chronic condition that will require care the rest of his life. Currently, it’s acute and my days revolve around it. I eat breakfast, not only standing, but taking a bite and then doing something that needs doing before the lymphedema nurse arrives. I haven’t showered, but the dog’s been walked, I’ve tidied, and I’ve thrown a load in the washer. This is the life of a caregiver, disjointed and always on call.
I am not alone in my call to give care, indeed, having joined a club that welcomes all members. Nearly 42 million adults in the US care for elderly parents or friends, with three out of five of these, women. The average age of caregiving recipients is 68.9 while the average age of caregivers is 49. I’m outside the norm on that one. But I’m not outside the norm of a 20 hour work week for caregivers (See https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.).
I’ve been thrust in the roll of caregiver four times in my life, and each experience was completely different. Context matters, who you are taking care of matters, your life at the time matters, the malady matters, how long the caregiving will go on matters, and your attitude matters. I suspect this is just a minimal list of all the permutations. For now, let me tell you a little about how caregiving has impacted my life. Maybe others will be inclined to share their experiences.
Two thoughts dominate my internal monologue. The first is how long will this last? Will it consume my entire retirement? There’s anger behind this thought, and I don’t like that in myself. But I’m not only angry. My second prevailing thought is compassion. Someone I love is coping with pain and the knowledge that his life will never be the same, that many of his favorite ways of spending time are gone. Probably toughest of all is watching him cope with the knowledge that this recurring illness is a harbinger of the end of life.
My first introduction to caregiving was when my mother, Margaret, was dying of kidney cancer. My two sisters and I agreed to do two-week stints to help her and our stepfather. I went first. It was heart wrenching to see her in pain all the time. Her cancer had spread to her bones, and she lay, mostly moaning in pain. A strong painkiller patch deadened some of her pain, but she was also in pain about dying. “I’m not ready,” she told me. “I wanted more time.” She never talked about how she would use more time. She knew she wasn’t going to have it.
My mother lived three months from those first two weeks when I cared for her. I never had a chance to care for her again. When I returned home, my second husband, Gary, was diagnosed with pancreatic cancer. I was to be a caregiver to him instead. Caring for my mother felt like a loving responsibility. I was to quickly learn that caring for a husband whom you love very much is a completely different experience.
Gary lived fourteen months from his diagnosis of cancer. We had a mix of good and bad times, and I never resented caring for him. During the hard times, he was extremely cross from his pain—understandable, but still difficult. During the good times, we mourned the loss of our future together. I was with him every step of the way. A part of my heart was broken when he died. A wise counselor has taught me that within the brokenness is the memory of a man I dearly loved. I can hold that memory and go forward with my own life.
Seventeen years after Gary died, I met Jim, my third husband, whose own wife had died of cancer. We were going along nicely, forgetting how life can turn on a dime. Over one Labor Day weekend, he developed sepsis and went into septic shock, almost dying. We later learned it was from a perforated ulcer. When he came home from the hospital, I was back in the club. What I didn’t expect were the demands of helping someone who’s in great emotional turmoil from the aftermath of the disease itself—depression. We muddled through, not realizing that chronic edema, a consequence of his illness, would create the ideal conditions for another bout of sepsis three years later.
So here I am again, a fourth time, which I sense will be indeterminate. I must say it feels different. Two days ago, a nurse bluntly said to us “It’s not edema, it’s lymphedema, a different condition. And you’ll have it the rest of your life.” She kindly didn’t add, “Get used to it,” but it was implied.
Once again, those same two thoughts haunt me—what will happen to my life? Will I be able to do the things I enjoy? Will I ever be able to travel again? And what about my writing? Rosemaling?
Then there’s that second haunting thought about his suffering and fears. I feel challenged to alleviate these and help him go forward. I also feel great sadness for him. Am I up to the challenge?
Susan Allen Toth wrote an excellent memoir, No Saints Around Here: A Caregiver’s Days, about caring for her husband who died of Parkinson’s disease. She writes:
“So much.” I think that simple phrase could easily be the motto emblazoned on a caregiver’s shield. Love, pain, courage, endurance, loss. So much, so much.
We caregivers are a club. We don’t have to feel isolated because we are in the company of caregivers all over the world, not to mention the circle of help from home nursing services, friends, and family. And we have love, the foundation that helps us go forward no matter how uncertain the future may be. As for me, it’s early, and doggone it, I will do my utmost to take care of both Jim and Karen. If there’s one thing the caregivers club has honed in me, it’s determination!
Karen, I love the honesty and hard-won wisdom in this blog. I wish you didn’t have so much experience with caregiving, but you seem to handle it with grace.
Thanks, Ellen. I hope I’ve given voice to other members of the caregivers club!