Caring for the Caregiver

Don Odens

We stood before family members and friends on the evening of July 24, 1965. My father asked, “Do you take this woman to be your lawfully wedded wife, to have and to hold from this day forward, for better or for worse, for richer or for poorer, in sickness and in health, to love and to cherish, ‘til death parts you?”

I answered, “I do.”

My answer was sincere but I did not comprehend the full significance of the question. No college professor had explained it accurately. No book I read prepared me to understand its ramifications. Moved by the optimism of young adulthood and a heart of love, I entered into a covenant of marriage without a hint of what “in sickness and in health” would mean for Gloria and me.

I did not have a clue, but I had a model. My maternal grandmother suffered numerous physical debilities during the last 40 years of her life including stroke, diabetes, blindness, and rheumatoid arthritis which left her hands unusable. She was incapable of caring for herself through many of those years but never spent one day in a hospital. My grandfather was her nurse. He bathed her, dressed her, prepared her meals, and fed her. I never saw my grandfather react in anger in response to the many demands placed on his shoulders.

Gloria spoke occasionally about Polycystic Kidney Disease (PKD), the genetic disorder that took her father’s life at the age of 42. The subject provoked greater interest when we learned that two older sisters had been diagnosed with PKD. Then, in her late thirties, tests revealed that Gloria also had the disease.

This discovery led to research, participation in support groups, and numerous visits to nephrologists. In 1998, Gloria experienced ESRD (End Stage Renal Disease). One of our daughters volunteered to donate a kidney and surgeons performed the transplant. Two days later, Gloria experienced hyperacute rejection—the strongest reaction of the immune system to foreign tissue. Family and a few close friends gathered around her in the ICU as medical personnel administered a powerful drug to prevent her immune system from destroying the graft while hoping the drug itself would not prove fatal. Our daughters sang songs of hope and confidence in God’s goodness. Our pastor led us in prayer. Gloria recovered gradually and assumed a pattern of life which became a new normal for us.

The transplanted kidney failed in 2010 and Gloria became dependent on hemodialysis. While dialysis is life-saving, its efficacy is limited and produces detrimental effects. Those effects were complicated in her case by other medical conditions and her needs for assistance increased.

In 2015, I recognized that I could not minister to a local church effectively and care for Gloria’s needs adequately at the same time. After 41 years of pastoral ministry I became a full time caregiver. I became a meal planner, grocery shopper, cook, house cleaner, laundry worker, and physical caregiver as Gloria’s strength declined. I have been trained to administer peritoneal dialysis as we made the decision to perform dialysis at home.

Recently, I Googled “Caring for the Caregiver.” One website estimates that there are 44.4 million caregivers in the U.S., age 18 and older, who provide unpaid care to another adult (21% of the adult U.S. population).

The responsibilities of caregiving take a toll. Helpguide.org lists anxiety, depression, irritability; feeling tired and run down; difficulty sleeping; overreacting to minor nuisances; new or worsening health problems; difficulty concentrating; increasing resentment; neglecting responsibilities; and cutting back on leisure activities as indicators of caregiver stress. Laurel Northouse, PhD, RN, directs a research program analyzing the effects of caring for cancer patients on the caregiver. She lists the most common challenges facing a caregiver as (1) uncertainty, (2) worry, and, (3) powerlessness.

For me, the past seven years have been filled with uncertainty. As I watched Gloria’s condition deteriorate and she became dependent on dialysis, we hoped for a second organ transplant. Friends asked, “Where are you on the list?”, a question which cannot be answered. Each day we wondered, “Will we receive the call today?” Finally, in July 2016, doors closed to the possibility of a transplant. The question became, “Where do we go from here?” Volatile medical issues feed uncertainty daily.

I am not prone to worry but am never able to escape the burden of concern. I have gone to Gloria’s bedside many times to check on her when she slept late and have driven home from my office when she did not answer the phone. I have received phone calls in which the caller began, “Mr. Odens, I don’t want you to be alarmed, but Gloria is being transported to the ER. Her fistula erupted and she was bleeding profusely.” In those moments, I find the Word of God to be my foundation and hope. The apostle Paul wrote, “we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day” (2 Corinthians 4:16).

I feel powerless on numerous occasions. The decision whether or not Gloria would be an organ recipient was out of our hands, made by committees in the three transplant programs with which we worked. I am powerless to change Gloria’s condition. I can minister to her needs, provide nutrition, seek to comfort, and procure the necessities, but I cannot make her well. That is frustrating to a person who likes to fix things! I have learned to be more patient. Life moves slowly for a patient with chronic and serious illness. Other decision makers follow their own schedule. I have to accept what I cannot change.

A persistent effect of caregiving is weariness. My experience is easier than that of many people, yet I never finish all of the work that needs to be done. I accomplish only the basics at home while other tasks remain unfinished. For the past two years, I have been privileged to serve on the seminary faculty but know that I could be a better teacher if I could devote more time. One of our daughters invests much time to caring for her mother. Friends fill in while I teach. And yet, I am tired almost every day. That is not a complaint, merely a reality.

Most men desire to invest their time and energy in that which is significant when they reach senior years. Training and experience have prepared me to stand in front of crowds to preach, teach, and lead. Now, in the eighth decade of my life, I desire to invest in efforts which have real value and will leave a legacy. As I reflect on biblical principles (Eph. 5:25, 28-30; 1 Tim. 5:8; et al) and the vow I made that night long ago, I conclude that caring for my wife is significant and a privilege arranged by our sovereign Lord.

This essay is by Don Odens, Professor of Practical Theology at Central Baptist Theological Seminary. Not every one of the professors, students, or alumni of Central Seminary necessarily agrees with every opinion that it expresses.

I Bow Me to Thy Will, O God
Frederick Faber (1814–1863)

I bow me to Thy will, O God,
And all Thy ways adore;
And every day I live I’ll seek
To please Thee more and more.

I love to kiss each print where Christ
Did set His pilgrim feet;
Nor can I fear that blessed path,
Whose traces are so sweet.

When obstacles and trials seem
Like prison walls to be,
I do the little I can do,
And leave the rest to Thee.

I have no cares, O blessed Lord,
For all my cares are Thine;
I live in triumph, too, for Thou
Hast made Thy triumphs mine.

And when it seems no chance or change
From griefs can set me free,
Hope finds its strength in helplessness
And, patient, waits on Thee.

Lead on, lead on, triumphantly,
O blessed Lord, lead on!
Faith’s pilgrim-sons behind Thee seek
The road that Thou hast gone.