The cry of the disabled caregiver: “I’m not a good patient!”

“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

By BENJAMIN PRATT,
author of Guide for Caregivers

Hair Pulling StressHave 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?

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Comments

  1. Wonderful points, raised, Benjamin. It’s always harder to be the one
    on the receiving end of kindness and help. Sometimes I wonder if
    it takes more strength to receive the kindness of others than to be
    the offerer of same. Wishing you complete healing.

  2. Benjamin, your willingness to be so utterly transparent in this helpful piece is itself a blessing. It gives me (and hopefully others) permission to climb down off the high horse of self-sufficiency and to own without shame my humanness. Thanks so much for writing it!

  3. Dorea Jones says

    Hello Benjamin!
    Sometimes I wonder if we are brother and sister by blood! So sorry to hear you’ve been immobilized. I hope and pray you won’t need future surgery and will soon be on both feet again! Having been the caretaker of a diabetic for 52 years now, I can’t fathom the idea of being on the other side! I’ve already told my doctors I will not be a good patient. To think of losing my independence is maddening to me…the next step I dread is the day I have to stop driving.

    There was a time, however, in 1982 when I had surgery and had to take six weeks to recuperate. I did learn how nice it was to have others care for me. The choir gave me a basket of small items with orders to open one each day and several times a week I was taken out to lunch. Five people covered playing the organ for me without charge so I didn’t lose any pay. The church provided meals for six the first two weeks, a sacrifice for them and a blessing for us. I received 60 cards! I felt SO loved. At least it was temporary and I was able to be up on both feet! I can identify with your experience so well! But times have changed because the surgery I had is a laparoscoptic procedure and the recovery is about 4 days. I wouldn’t have felt the love if I hadn’t had the six weeks to recover!

    While you’re down, why don’t you write another book?!

    Blessings to you and your care giving wife! I love that she denied you your smiley face sticker!
    Love,
    Dorea