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?

Your body won’t lie. Your mind will!

By BENJAMIN PRATT,
Author of Guide for Caregivers and contributing columnist

A moment of stress by N Renaud via Wikimedia CommonsBoth of our daughters were ill at the same time recently, and they live 1000 miles apart. No, they are not twins. It was just coincidence. Nothing serious really—each complained of being worn out, tired, no energy, exhausted, congested, aching.

Our older daughter described it by saying, “I just needed to drop out for a few days and have an affair with my couch.”

Neither left her couch for three days.

Both are in their 40s, leading very different lives, yet they have a few things in common—endless work and constant stress from self-demanding standards. Confession time: They got it from their parents.

Our older daughter is a successful businesswoman who devotes untold hours to charity work. Among her many time commitments are serving as a regional board member for the American Red Cross—plus fund-raising and development for a local museum and the regional symphony and for a local child care center related to her church. She is also a key creative player in the annual book festival for her city.

Our younger daughter is a 4th Grade teacher in a Texas border city. She works 7 to 7 most school days and juggles the demands of her family, with children’s sports and school functions.

I talked briefly to both of them on their lie-down weekend. I, of course, had to drop in my fatherly advice: “Your body won’t lie. Your mind will! Your mind will tell you that you are able to do one more task. But at some point, your body will just shut down and demand a rest. I think that is what is going on at this moment. If you don’t listen to your body and treat it better it will get sick.”

They politely listened, but I strongly suspect they will not follow my sage advice much more than I did myself at their age.

When I teach caregivers I often take a bottle of water and hold it out at arm’s length and ask its weight.

The replies come back: “Six ounces?” “Twelve ounces?”

Then I ask, “If I hold it like this for an hour, how much does it weigh?”

Smiles begin to appear.

Finally I ask: “If I hold it for 24 hours? A week? A month? A year? Five years?”

I pause, as they are nodding with me, and I say: “Now you know the weight of stress!”

I have a good friend whose mother died recently. Nearly seven years ago she retired from a position she loved to become the caregiver of her mother whose physical and mental capacities were diminishing rapidly. Her mother was finally placed in a nursing home where my friend visited her daily. She continued to go each day, even when her mother only rarely recognized her or expressed any appreciation for the visits. As if this was not enough stress, her husband developed serious heart problems. My friend was a caregiver on two fronts.

Not long before her mother died, my friend began having problems talking. Her voice became raspy and could barely be heard above a whisper. She has had extensive tests which reveal no physical abnormalities in her throat or larynx.

Her doctor simply said, “Have all the muscles in your neck always been so tight?”

“No,” she replied, “Only in the recent years that I have been under a lot of stress as a caregiver.” She says that the voice lessons she is now taking are helping, but it will be a long recovery.

It is well for each of us caregivers to remember that our bodies won’t lie—our minds will.

Be tender toward yourself.

Listen to your body.

BENJAMIN PRATT’s recent columns include “Simple Gratitude for Simple Gifts” and “Did I Say Anything about Anger.”

Recovering in a bath Becky Wetherington via Wikimedia Commons

PHOTOS today are not Benjamin’s daughters. Both photos were contributed for public use via Wikimedia Commons. Top photo was taken by N. Renaud of Canada; bottom photo was taken by Becky Wetherington.

Simple Gifts: Seeing opportunities to humbly help

Heather Jose photo.

Heather Jose

WELCOME BACK the Rev. Dr. Benjamin Pratt, author of the Guide for Caregivers. Today, Ben brings us another thought-provoking column about the challenges we all face in helping others. Recently, ReadTheSpirit published an in-depth interview with the famous teacher on compassion and peacemaking, Johann Christoph Arnold. In that Q&A, Arnold said that the key to happiness as we age is finding daily opportunities to help others. Today, in a free-verse poem, Ben simply captures a trio of such moments in a typical day. He starts by recalling the 1848 Shaker hymn, Simple Gifts, by Joseph Brackett:

When true simplicity is gain’d
To bow and to bend we shan’t be asham’d
To turn, turn ‘twill be our delight,
Till by turning, turning we come round right.

Simple Gratitude for Simple Gifts

By BENJAMIN PRATT

I.
A Praying Mantis in the wildHe is old
uses a cane
bent over and slow
takes all he has to climb into the city bus
Takes the only seat left
Others fill the aisle—hanging from the loops
The bus jerks forward
He searches each pocket, jacket, pants, and shirt
His nose is running, now dripping—
but nothing to wipe it
Across the crowded aisle, I reach into my pocket
where I always carry napkins
I slide some toward him
across the aisle
between the legs of standers
He takes the napkins
wipes his nose—never looks my way
I know he’s grateful
if a bit ashamed
I know because I’ve been there.

II.
How she managed two shopping carts
we do not know
She loads the rear of her SUV
with food and drinks
Stuffs her small child in his car seat
Ready to go?
No!
Two carts to return with:
Child waiting. Car unlocked. Groceries piled.
My wife sees her predicament
“I’ll take your carts back.”
“Oh, thank you. Thank you!”
Relief
As she drives away,
she rolls down her window:
“Oh, thank you. Thank you!”

III.
She is hanging upside down
inside the window screen
She looks puzzled, trapped, chagrined—
her ET-like eyes
overwhelming her small head
bobbing on her long, slender, mint-green body
I’m certain she is a she—
her regal head contentedly nodding,
despite her obvious predicament
I slip a cupped white paper under her
The queen slowly steps forward
entering her carriage
“Welcome Madame.”
She is deferential to her new footman
I escort her outside
where she slowly exits her carriage
onto an hydrangea leaf
She pauses as she turns
and with the slightest nod of her head
she acknowledges her new footman.

.

(FEEL FREE to share this column with friends. You can do so by using the blue-“f” Facebook icons or the small envelope-shaped email icons. You also are free to reproduce or repost this poem, as long as you credit Benjamin Pratt and readthespirit.com)

CARE TO READ MORE FROM BENJAMIN PRATT?

The Rev. Dr. Benjamin Pratt is a noted expert on compassionate care and is the author of Guide for Caregivers.

‘Nebraska’ … Where Wishes (Could) Come True

Heather Jose photo.

Heather Jose

A Note from Your Host: Caregivers know video! TVs often are on wherever we go. Of course, we may not have time to sit down and watch an entire movie, unless we plan ahead—and that’s the point of Benjamin Pratt’s column today. This highly praised new movie with Bruce Dern shares some serious insights. In 2014, we are inviting Ben to write a Caregivers column each month. In January, he wrote about footwashing as a wedding ritual.

Going to ‘Nebraska’

By BENJAMIN PRATT

“NEBRASKA,” the film nominated for six Academy Awards, offers surprising wisdom and good modeling.

Bruce Dern in "Nebraska"

Bruce Dern in “Nebraska”

This bleak comedy in black and white reflects the dismal winter landscapes mirrored in the struggling, hard-tack characters. Woody Grant, an aging, family-neglecting alcoholic is found by police walking in Billings, Montana. David, his son, rescues his father whose destination is Lincoln, Nebraska.

Woody’s goal? He wants to collect a $1 million sweepstakes prize. David reads the sweepstakes letter and chides his father for mistaking a mail scam as a prize winner. Woody remains convinced. He still thinks he can collect the winnings, despite the naysaying of David and his wife’s acrid criticisms.

The misadventures of father and son en-route to Lincoln, their family and acquaintances, will get you clucking with disgust and laughter and an occasional tear in the corner of your eye. Woody’s extended family and former friends all latch onto his dream of $1 million and the vultures move in. But don’t worry—I’m not going to tell you the whole story. This is a movie best experienced, before reading about it. So, make a plan to see it! If you can’t wait, I suggest you read this excellent review by my friend, Ed McNulty.

I knew nothing about the story prior to entering the theater, as is my usual preference. What surprised me most when watching “Nebraska” was remembering the wisdom of Haim Ginott, the author of Between Parent and Child, a guide Judith and I turned to often when rearing our children. Ginott offered a unique combination of compassion and boundary setting; he showed respect for a child’s feelings while setting limitations on his/her behavior.

As I recall Ginott’s advice, it was: Grant them in wish what you cannot grant them in fact. For example, when our child wanted chocolate ice cream at bed time, I might have responded, “I know you really want ice cream now. I would like some too but I can’t because it might keep us from sleeping well.”

It is this gift of acknowledging the wish—but attempting to set boundaries—that David employs as he guided his prodigal father through the film. He listens to the feelings behind his father’s words, a fascinating reversal of roles but not one unfamiliar to us who care for aging parents.

David finally asks his father what he would do with the million dollars. “I’d buy a new truck and a new compressor,” says Woody. David, tenderly surprised, reminds his father he no longer has a driver’s license. Sober, somber Woody replies that he wants to leave something for his family when he passes. He wants these for them, not for himself.

He wants dignity at the end of his life. There we finally have the yearning, the feelings, the real wish stated. Behind the words is the ache of a man who knows he has failed to be who they needed and wanted him to be. He wants to leave them with a positive that he had never been able to give.

As I reflect on the movie and Ginott’s advice, I can see there’s real wisdom there for many of us: Sometimes, we can give them what they wish. But first, we need to slow down, listen, be present, carefully listen to the hope and ache behind the words.

Go, see this film. See if wishes come true.

Seen a bride and groom wash each other’s feet?

Heather Jose

Heather Jose

A NOTE FROM YOUR HOST: In 2014, we are making some changes at WeAreCaregivers to better serve our readers. The first is our commitment to bring one fresh column by popular author Benjamin Pratt to our website each month. His book on caregiving is popular with readers nationwide. Please, help us to connect with more readers by sharing these columns via Facebook (the blue-“f” icon) and email (envelope-shaped icon).
Heather Jose

Foot Washing:
As a wedding ritual?

Foot washing by UK artist Dinah Roe KendallBy BENJAMIN PRATT

After a long career in ministry, I was astounded when I first heard the idea.

A friend said, “I attended a wedding recently and for the first time witnessed a mutual foot washing by the bride and groom. Have you ever seen that?”

“No,” I said, “I am flabbergasted, but I love the idea of including a foot washing for all that it symbolizes.”

Since that conversation I have asked many clergy and friends about the idea, and nearly all were as surprised as I by the concept. I extended my question to some of my colleagues in the ReadTheSpirit circle of writers and, finally, I did begin to get some responses from others who have seen this idea taking hold. Paul Hile, a young caregiver who occasionally writes columns about his experiences with his wife Grace, says that they have attended more than one wedding where a foot washing was included.

The more I ponder this idea, I am grateful. And, I am challenged.

How about you?

Pope Francis certainly seems to understand the challenging symbolism of this act. One commentator used the phrase “beautiful iconoclasm” to describe Francis’s public appearance last year to perform a foot washing ritual at a juvenile detention facility where the inmates who he served on bended knee included a Muslim girl. This was the first time the world’s news media paid any attention to his approach to this ancient discipline, but it turns out—in later news reports—that he had a longstanding practice back home in Argentina of foot washing in jails, hospitals and caregiving facilities, including pregnant mothers and AIDS patients.

Foot washing as a symbol of humility, hospitality and service has been a part of many faith traditions for centuries. It grounds a relationship in equality and promotes humility towards—and care of—others. We are told of Jesus performing foot washing in John 13: 1-17, “If I then, your Lord and Teacher, have washed your feet, you also ought to wash one another’s feet.” The Qur’an says “For Allah loves those who turn to Him constantly and He loves those who keep themselves pure and clean.”

In our ritual-starved society, mutual foot washing as a wedding symbol could deepen our life-long commitment as marital partners as we live “for better, for worse, in sickness and in health.” Remember, love is what you go through with someone, as I have written before.

As a caregiver for my wife during the last few years, I have often had to attend to her bodily needs when she was not able to do so. At other times in our marriage, she has reciprocated. Simple daily gestures of love and care demonstrate our commitment to be here for each other through the muck and mire of life’s needs. We are not in this journey alone; we are on the journey together as equals.

When we celebrate a marital union, the inclusion of mutual foot washing could deepen and dignify the marital commitment to be life-long caregivers and receivers on life’s journey. With so many of us living longer lives, the vast majority of us will likely become a caregiver of our partner. But, caregiving and receiving can be part of our lives early in the marriage also, as my friend Paul Hile reveals in one of his columns.

So what better way to symbolize our long term commitment to love, service, hospitality, presence, and hands-on equality than including mutual foot washing in our wedding ceremonies? This single, prayerful, powerful symbol could deepen wedding celebrations significantly.

DO open your mind and heart and enter a dialogue on this subject by placing a comment below.

Care to read more?

The British artist Dinah Roe Kendall has worked for many years on surprisingly fresh visions of her Christian faith. Her images often place traditional Bible stories in common, contemporary settings—like her painting of the foot washing scene in John 13, re-envisioned in a circle of middle-class British men and women. The artist lives in Sheffield, where she has produced a long series of artworks that eventually reached the attention of American Bible scholar Eugene Peterson. The two collaborated on a book that we highly recommend: Allegories of Heaven: An Artist Explores the Greatest Story Ever Told.

(This column was originally published at www.WeAreCaregivers.com and can be reposted and shared with this credit line.)

A death in the family? ‘Be tender and gentle with yourself.’

Heather Jose photo.

Heather Jose

As we founded WeAreCaregivers earlier this year, we promised to cover a wide range of issues facing the millions of caregivers working every day across this country. But one subject we haven’t addressed is death—a fear that looms large for many of us. At least at times, doesn’t it?

Now, as we count our blessings and give our thanks this November, it seems appropriate to touch on this subject that affects so many families in so many ways. Today, caregiving expert and author Benjamin Pratt writes about how deeply a death in the family can unsettle our lives. As you approach the year-end holidays, if your family is still coming to terms with a death—well, consider Ben’s story …

A Death Observed

No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing. At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me.
C.S. Lewis in A Grief Observed

By the Rev. Dr. Benjamin Pratt

American tombstone by Steve Evans via Wikimedia CommonsWhen my father died, I gave myself the straight-forward advice that I had shared with others who had lost someone close throughout my long career in pastoral counseling: “Every emotion, idea and action in your life over the next six months pivots on your father’s dying. Don’t make any major decisions, plans or changes for the next year. Pay careful and cautious attention. Be tender and gentle with yourself.”

It was not long until I forgot my own advice.

Life, following the funeral, became filled with the janitorial functions that follow any death. I had to clean out Dad’s house and sell it and his car, the total of his life’s possessions. I handled the tedious probate of his will and paid his debts. This was, of course, on top of my already busy life as a father, husband and professional counselor. I did spend some time, especially in the first two months, with family and friends talking about the impact of losing my father.

I thought I was doing well. But, what did I know?

After settling my father’s estate, my brother and I each inherited about $7,000.00. Not a significant sum, but more than I had anticipated. After the tedious work was finished, the emotional tension began. It pressed me in night dreams and day dreams. The images were intense, exciting and constant. Each was different but with the same focus—I would give away large sums of money to support causes I value deeply. In one dream, I imagined plopping $50,000.00 on the desk of Morris Dees at the Southern Poverty Law Center. I unleashed $75,000.00 to the United Methodist Committee on Relief to help victims of famine and violent storms. The list grew; the funds didn’t. The images of giving away money I didn’t have obsessed me. One day, in a bit of panic, I called a broker, gave him my inheritance and told him I needed him to make a lot of money—so that I could give it all away one day.

The plan was in place.

Then, the stock market crashed and most of the money was lost. Wake up time! It was then that I remembered the admonition to myself at the time of Dad’s death. “Everything in the first six months is about your father’s dying. Don’t make any major decisions or plans in the first year”.

Time to step back and get a new perspective on what is happening. I began to search for the answer to what was really driving my urges to give away money I didn’t have. I began to face and feel emotions that I had worked hard to ignore, feelings that accompany vulnerability. Underneath all of my busy-holding-it-together exterior I was feeling like an orphan without parents, and I was especially aware of feeling very empty, lonely and powerless.

What I came to realize was that my intense images of giving huge sums of money away gave me a feeling of power. In truth, my power felt very limited. The benevolent images helped me cover my feelings of frailty, sadness and loss. They were definitely not the basis for a plan. They were mirrors reflecting the struggle of my soul. When I was feeling least potent because of the loss of my last parent, I turned to a fanciful image to mask my vulnerability and to make me feel vital and powerful.

As I reflect on this chapter in my life now, I also realize that it revealed a very positive trait of my character and soul: that I feel most valued and potent when I am giving to someone in need. That is when my soul sings. The images of giving money away were fantasies, not plans. They reminded me of who I am when I am responding as one crafted by God. There was both frailty and grace in my journey through those months.

As you enter the “family holidays” time of the year, think about all of the men, women and children you will encounter who are still within a year of a deeply felt death. And remember my advice, even if I forgot it for a while: Be tender and gentle with one another.

PLEASE, share a comment on Ben’s column. We also give you permission to share and even republish Ben’s column, as long as you retain his byline and include a link back to http://www.WeAreCaregivers.com, a part of the readthespirit.com online magazine. Want more from Ben? Check out his book, A Guide for Caregivers. (Psst! It’s a great holiday gift for someone you love.)

No Suggestions Please; Just Read.

Welcome back to WeAreCaregivers.com. I’m Heather Jose, your host, and I will return with a personal column next week. TODAY, please enjoy two new, heartfelt columns: First, in the main pages of ReadTheSpirit, Tyler Stocks writes about growing up with autism. Then—right here—the Rev. Dr. Benjamin Pratt returns with a column we are sure you’ll want to share with others. It’s called simply …

No Suggestions Please; Just read.

Rocker at Shaker Village at Pleasant Hill KYBy the Rev. Dr. BENJAMIN PRATT

No suggestions please;
Just read. Just see. Just hear.

The weather outside is mild, gloomy—rain is predicted but not anticipated.

She sits in front of the fire wrapped in a soft, deep blue prayer shawl, crafted by a friend with love.
She shakes against the cold that is more a part of her body than the room—she curls in to contain warmth she wishes were hers.
The pain started where it always starts—behind her left shoulder. It creeps slowly up her neck and around her left ear. Nothing stops it this time!

She requests the heated collar for her neck, an ice pack for her eyes. Then, she lies back in her chair—quilted robe, quilted socks, shawl, heat collar, ice pack, roaring fire.
Sometimes we rock together, but today she wants to sink back on her own. She nestles the plastic buds into her ears—those links to sanity and distraction, an audio book. It must always be read well and, as she always instructs: hopefully not by the author. She wants it read with feeling and clarity.

Set now?
No, one more item—a trashcan with a plastic liner for a sudden bout of vomiting that may come with little warning.
And now? Set? I know the rules:
No Loud Noises!
No Jarring, Bright Lights!
They deepen the pain.

No suggestions please;
Just read. Just see. Just hear.

This bout has lasted nine days.
My regular gait  has moved to tiptoes. I am the caregiver and, once set for a while, I move on to read, write, pray, hum. All quietly. I ponder. Responsive and purposeful. A veteran. And still honestly—filled with hope. Yet, sad.

Sometimes I picture God. We have a lot in common, now. God and I ache about our loved one and often feel helpless.
We are in a rocking chair. Sometimes, she and I rock together. Today, I am holding and rocking God. Other times, God is holding and rocking me. God and I sing a gentle song to each other.

No suggestions please;
Just read. Just see. Just hear.

“I am holding you, my beloved, and rocking you with love. I wish I could do more, but faithful presence and loving faithfulness is who I am.”

God and I rock each other and sing those words of Grace.

.

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