Easing a burden, one step at a time

The afternoon that I went for a walk with Linda* for the first time was one of the moments I’ve been proudest of as a hospice volunteer, odd though that may seem.

I’d first met Linda a few months prior to that, when the late fall and winter light made her and her husband Joseph’s small and cluttered apartment dark in the early afternoons. I was there mainly to visit Joseph, who was immobile and unspeaking in his hospital bed in the living room, following a devastating stroke. In theory, a volunteer’s role is to keep ill people company and give their caregivers a break. But I’ve found that caregivers often opt to stay home with their loved ones instead. Why? It may be a fear that something awful will happen in their absence; worry that only they know how to best care for their loved one; or a simple desire to have company themselves once a week for a couple of hours.

Whatever the reason, this was the case with Linda too. And over several months, I came to understand the fierceness of this diminutive woman’s devotion to her husband.  She made sure that he was always clean, that he was turned often enough to avoid bedsores, that he would eat his favorite foods that she’d cooked and blended so she could feed him one spoonful at a time, however long it took. At night, she slept, fitfully, in a reclining chair next to his hospital bed.

The standing cliché about volunteering is that the volunteer gets more out of it than the people he or she helps. That’s certainly been true for me. Over a period of months, I learned about how limitless love and devotion could be. It wasn’t just Linda; their grown children visited regularly, too, always talking with Joseph, being affectionate with him, including him in their conversations.

I wondered how much Joseph understood about what was going on, as he lay, locked in his own body without being able to move or speak. I wondered about the strength of the human spirit, about the bonds that connect us to one another. I wondered about how limited we may be in thinking about what it means to be human, and about what constitutes a life worth living. What seemed clear to me was that Joseph, despite his illness and innumerable, dire complications, was still very much with his family and continued to live longer than anyone expected, likely thanks to all of Linda’s and their children’s love and care.

But caregiving takes its toll, and Linda was exhausted.  So when I visited, I would try to persuade her to go out for a while, but she preferred to stay in, and we would talk over tea and the treats she would urge me to indulge in. That was how I got to know the happier contours of their lives, before illness struck.

Then one glorious spring day, it happened. “Let’s go out for a walk,” I said to Linda. (As long as an aide was there, Joseph wouldn’t be alone if we did.) Finally, she said yes. She disappeared into the bathroom for a while, and when she came out, she had put makeup on, changed her clothes, and fixed her hair. We linked arms, the way I’d done with my mother when she’d been ill, and we walked slowly around her neighborhood. Maybe a couple of blocks at first, but that increased gradually as we walked several more times that spring and early summer, until Joseph died.

I like to think that offering my friendship and a little respite helped her to continue bearing her burden. I still speak with Linda from time to time. She has said that she still feels lost, which breaks my heart. She asks me about my family, and we say “I love you” at the end of our conversations. I don’t know if she goes out for walks anymore. I hope so.

* Names have been changed to protect their privacy.

Ellen Rand is a journalist and author of Last Comforts: Notes from the Forefront of Late Life Care. She can be reached at Last Comforts and on Twitter @EllenRandNJ.

Image credit: Shutterstock.com

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