"Solitary Confinement or Zen Retreat?" Elder Rosewalk finds challenges & rewards of caregiving.

As a caregiver, I find myself reading blogs to see how others have negotiated caregiving challenges. One post from a blogger whose spouse has now died offers this advice: don’t resist. Another caregiver’s blog post captures my attention, comparing caregiving to solitary confinement. Each day I negotiate the territory between these two extremes.

          My husband Jerry (“J”) had a disabling stroke in July 2015, leading to major alterations in his life—and mine. Repeated cycling through the stages of grief, we moved houses, acquired equipment, scheduled therapy. Speech therapy, occupational therapy, physical therapy—each offered promises of improvement.

          Nearly three years later, J is somewhat improved, but still severely impaired. He requires assistance for most activities. He sleeps more than sixteen hours a day.

          Most of my choices consider his needs first: is an assistant available to stay with him so I can go to lunch with friends? will J have the stamina to ride in the car for two and a half hours to visit family? will a planned meal be easy for J to eat with one hand? These questions (and more) are the backdrop for our lives.

     Family members get busy with their own lives, neglecting to send even thinking-of-you texts. Three years after J’s stroke, most friends no longer ask what they can do to help. People are busy, and it is tiring for me to continue to explain our situation, difficult for me to explain how lonely I can be.

     Besides, J sleeps a lot, and he is overwhelmed by conversation or visits that last longer than an hour. Also, it takes energy and effort to maintain contact with people who are concerned but clueless.

          Some friends have dropped out of our lives; others are more present than before.  Sometimes I get lonely, but I try to focus on the moment: my husband’s snores, Norah Jones on the stereo, a vase of yellow roses contrasted with a gray sky, a pile of books and magazines waiting to be read, my purple pen, my journal . . . this is my life.

Instead of focusing on what J and I can’t do, I focus on what we can. We won’t be traveling internationally again, but perhaps we can make a trip to an adjacent state or to a nearby city for a concert. I won’t be joining the community choir in their weekly rehearsals (which occur during J’s most alert time), but we will continue to enjoy our favorite programs together, and we will seek out recitals and concerts we can attend together.

          Don’t resist gets me through weeks and weeks of caregiving challenges. And then, other missed opportunities beckon:  a summer’s worth of unachievable travel dreams, alluring evening events and activities—most of them not interesting (or accessible) to J. On bad days, I feel inescapably confined.

     I am not a pessimist by nature, but downward spirals into solitary confinement can be seductive. Sometimes, I let myself indulge in a few hours of despair, but sadness is exhausting.

     I have my go-to techniques to spiral out of despair:

a walk in the sunshine

a trip to the grocery store

lunch with a friend

a good book

catching up on the laundry

These things—and more—are key to maintaining optimism. I prefer hope to despair. I prefer a zen retreat to solitary confinement. It is my choice.

                                                   --- Rosewalk

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