The Cry of the Disabled Caregiver: "I'm Not A Good Patient!"

Monday June 09, 2014

The Rev. Benjamin Pratt
Organization: Not available
Denomination: United Methodist Church

I lay ill through several weeks, and the usual tenor of my life became like an old remembrance. But this was not the effect of time so much as of the change in all my habits made by the helplessness and inaction of a sick-room. My housekeeping duties, though at first it caused me great anxiety to think that they were unperformed, were soon as far off as the oldest of the old duties. … I had never known before how short life really was and into how small a space the mind can put it.”

Esther in Bleak House, by Charles Dickens

“Step 1 of learning to walk in the dark is to give up running the show. Next you sign a waiver that allows you to bump into some things that may frighten you at first.”

Barbara Brown Taylor in Learning to Walk in the Dark

HAVE YOU lived through this reversal of roles? As a caregiver, you suddenly find yourself in the role of care-_ receiver! _

You've probably raised the cry of the disabled caregiver: "I'm not a good patient!"

Read my story—and you're likely to nod your head. It was a serious problem involving one of my feet that flipped the roles in our household: My wife Judith, who has occasional periods of disability, suddenly was caring for me! I freely admit that I'm a bad patient, primarily because of my _ im- _patience. And, if I'm honest, my pride.

One day, when Judith slipped out of the house to buy a few groceries, I was nestled in my chair, reading. I was under strict orders from my doctor and my caregiver-wife to stay off my feet. So, as she departed, I was fixed in the chair, foot elevated to reduce the persistent swelling from my recent surgery and a four-month-long infection.

When she returned, she went about tucking goodies into the pantry and refrigerator. She slipped in a wry comment, “I see you had a visitor while I was gone. It was so nice of _ whomever _ to wash the few dishes in the sink.”

I sucked air, shuffled and hurumphed, saying, “I stood on one leg while I washed those dishes.”

“So, you hopped over here on one leg?” she retorted.

“I can’t stand, pun intended, not doing my share of housekeeping duties.”

Again she retorted with a wry grin, “Guess what? This is one more day you are _ not _ going to receive a smiley face sticker!”

This was one of the lighter, more playful exchanges over recent days. I have not transitioned well from being a caregiver to being a care receiver. I have been obstinate, willful, sometimes making her my enemy and not my friend. This switch of roles has forced me to examine my motivations and my behavior.

I reluctantly confess how proudly I identified as a caregiver. The role fit my persona and reinforced my sense of purpose and identity. I invested so much of myself in that role that I became too proud to receive care. I am facing the reality that I resisted letting another love and care for me. I have been boldly confronted with my stubbornness and resistance to love and grace. I have selfishly held on to being only a giver; resisted being a receiver. I definitely need to accept, even encourage, another’s gift of care.

I have been a patient a few times in my life but never for the duration nor gravity of this occasion. When I was in my early thirties, I broke both my arms at the same time and was totally helpless for a month. This four month stint of infection, out of control blood pressure, and finally a surgery (and possibly another ahead), undergirded with the reality of my age, has thrust the life questions of health, mobility, place of residence and purpose of life all center and forefront. Oh, and did I mention, aging comes at a most inconvenient time!

Over the years, I have used my imagination to foster empathy and compassion as a caregiver. It is clear to me now that my imagination has lacked what only living the experience of patient can teach. Imagination pictures that living with a wounded foot makes one or two vertical steps seem like a hill. Actually living with a wounded foot can make one step feel like stepping across the Grand Canyon.

Then, a week ago, journalist David Briggs—who reports on new research for the Association of Religion Data Archives—posted a column on a new study making this very point: "In a culture that prizes rugged individualism, and can interpret personal needs as a sign of weakness, many Americans find it is more acceptable to give than to receive. Yet the blessings appear to multiply when you are able to do _ both ,_ according to new research. Americans who both meet the needs of others _ and _ are cared for in a nurturing community are much more likely to love and trust their neighbors."

The research makes sense, doesn't it?

Sitting where the other sits is surely the best way to foster our empathy and compassion. If only every preacher would sit in the pew; every jailer behind the bars; every wealthy person roam the streets at night; every white be a person of color; every man, a woman; every caregiver, a patient—we might become a more hospitable world.

I'm still a bad patient—but I am starting to feel more grateful for my experience. How about you? What's your experience?

(Originally published at www.ReadTheSpirit.com, an online magazine covering religion, spirituality, values and interfaith and cross-cultural values.)

(Originally published at www.ReadTheSpirit.com, an on line magazine covering religion, spirituality, values and interfaith and cross-cultural issues.) - See more at: http://www.readthespirit.com/caregivers/#sthash.WoCbaKV7.dpuf