I have Parkinson’s — and my wife is its invisible victim

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)

By Don Riggenbach March 4

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