Alene Moris, a consultant, participates in a forum on better supporting caregivers during The Washington Post Live forum on Caregiving in America sponsored by AARP, in Seattle in 2014. (Scott Eklund/Red Box Pictures/For The Washington Post)
Probably the only good thing I can say about having Parkinson’s
disease is that it has introduced me to the unexpected helpfulness of others.
Any time I venture out with my sturdy cane, people go out of their way to open doors,
offer a helping hand or instruct their kids to stand aside as I shuffle past.
Some teenagers will even extract themselves from their smartphones to offer
assistance.
Yet people seldom offer to help the woman who struggles to hoist
me from the car seat, push my chair up to the restaurant table or quietly cope
with my unseen, round-the-clock needs and demands.
My wife, Jan, is struggling to do the things she did in the era
we call B.P. — Before Parkinson’s — along with most of the things I did. Every day,
the most urgent tasks steal time from mere daily requirements. While I’m
sleeping off the side effects of my medications, she’s at the pharmacy picking
up refills. While I’m waiting for her help getting me dressed for my Thursday
breakfast group, she’s racing to dress herself, care for the dog and plan her
workday before she drives me to the cafe. Whatever Jan is doing can be
interrupted when I suddenly need help getting out of a chair or pulling up my
pants.
Sometimes I say thank you. Often I don’t, because I’m already
thinking about something else I need her to do for me.
The little sensitivity I’m able to show for her situation has
come in response to her occasional signs of exhaustion or pleadings for
understanding, as well as from an eye-opening article I happened upon about the
widely unrecognized plight of the “well spouse.”
Marty Beilin, a former spousal caregiver who has written
extensively on the subject, described the well-spouse journey as beginning with
shock over a partner’s diagnosis, which can take weeks to absorb. “What would
take longer for our mind to grasp,” he wrote in
an essay about the “caregiver journey” for the Well Spouse Association, “is how
and the extent to which our lives, too, would be transformed.”
The most important realization, Beilin noted, was that “to
provide good care we must first care for ourselves. To neglect our own
well-being is to risk burnout, and then we neither serve our partners or
ourselves very well.”
After forays into hope (including late-night online pursuits of
miracle cures) and despair (and the instinctive impulse to run), caregivers
eventually accept “the new normal” — realizing that they’re in for a tough slog
and that to survive they’re going to need both physical help and informative
resources.
The Well Spouse Association provides useful and reassuring
publications, workshops, respite weekends and both online and face-to-face
sharing groups. My wife is a loyal participant, grateful that I learned of the
group and bought her a membership.
But don’t kid yourself — or me — by thinking, “How sweet!
Despite the torture of Parkinson’s, he’s worrying more about his wife than
himself.”
Most days, that’s not the case. In my experience, as one’s
universe becomes smaller, one is more inclined than ever to view oneself as the
center of it. Whenever I do pause to contemplate what would happen if Jan’s
role and mine were reversed, what I’m really experiencing is more a fear of
inadequacy: Would I have the strength to be for her what she is for me?
Indeed, the healthier partner is the invisible victim of
progressive diseases such as Parkinson’s, Alzheimer’s, multiple sclerosis,
late-stage cancer, amyotrophic lateral sclerosis (Lou Gehrig’s disease) and
many others. She — or he — has the most endless of thankless jobs, till death —
or abandonment — do us part.
By coincidence, my father-in-law had Parkinson’s. So my
mother-in-law was, to use today’s label, a well spouse. Looking back, I
remember thinking her complaints of overload and exhaustion were whiny and
selfish. From my vantage point today, I see that I owe her a hug — and some
retroactive assistance.
https://www.washingtonpost.com/opinions/caregivers-the-invisible-victims-of-chronic-illness/2016/03/04/075e4f5c-d578-11e5-b195-2e29a4e13425_story.html
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