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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