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The following is part two of this previous post.  The topic is one author’s reflection on what happens after caregiving ends.  In thinking about the idea of caregiving ending, I have come to realize that in fact, caregiving never completely ends.  Instead, I think a better phrase is to consider it as a caregiving situation coming to an end.  Life in a way is always about being a caregiver, whether it is raising a child or caring for an ill loved one, most of us will spend a good portion of our lives in the role of providing care to others.

After Caregiving, Comfort in Having Helped

By JUDITH GRAHAM
Karen Gurney cared for her mother, Jeannette Gurney, on the left, until her death.Courtesy of Karen Gurney Karen Gurney cared for her mother, Jeannette Gurney, on the left, until her death.

Caregiving is so all-consuming, it can seem impossible to imagine life after, when all of those responsibilities are suddenly gone.

It is then that many people become aware that they were on autopilot, with their deepest emotions and needs kept at bay. Some are washed with relief. Others feel adrift. Some go back to life as usual. Others are permanently changed.

On Thursday I told you about two people and their reactions after their caregiving days ended. Today I report on another former caregiver — and myself.

Karen Gurney, of Tempe, Ariz., moved in with her mother after her father died and was there when her mother, hobbled by diabetes and peripheral artery disease, had her right leg amputated above the knee in 2004.

“My mom, she was a peach; she had a wonderful attitude,” said Ms. Gurney, who was working at the time as a technology trainer at a local college. “But she had to have someone with her all the time. It was physically demanding and emotionally draining to care for her.”

Ms. Gurney’s oldest brother, Wesley, also lived in his mother’s house and was lending a hand, but in 2010 he had a stroke that left his thinking impaired and his short-term memory shot.

 

Wesley Gurney was cared for by his sister, Karen Gurney, after he suffered a stroke.Courtesy of Karen Gurney Wesley Gurney was cared for by his sister, Karen Gurney, after he suffered a stroke.

“He didn’t recognize the house and where things were,” said Ms. Gurney, who became her brother’s caregiver as well as her mother’s. “It was extremely stressful. I had reached an even keel with my mother, then with my brother it was kind of like being pinned under a two-ton truck. I could barely breathe.”

Six months later, Wesley died of a heart attack and Ms. Gurney’s mother, overcome by grief, took a turn for the worse and died in April 2011.

“Initially, it was like having that truck lifted off me,” Ms. Gurney remembered, “but then I didn’t know what to do. All of a sudden my purpose in life was gone. Everything changed, dramatically, drastically. There were days I didn’t get up until late afternoon because I was in bed crying.”

Making things more difficult, Ms. Gurney had arranged to retire from her job so she could give more time to her mother. Now that structure was also gone.

Commitments helped. A man who had helped care for her mother during the day asked Ms. Gurney to help him out after a knee replacement; she did so during the summer. “I don’t know if I liked doing it, but I got up and did it, and doing something for someone else made a difference,” she said.

A friend from church called every day to find out how Ms. Gurney was and offer encouragement. Gradually, Ms. Gurney became more active in her church and president of its relief society, responsible for keeping track of members’ needs and arranging assistance.

This role suited in a way that becoming intimately involved with people did not. “I don’t think I could do again for someone else what I did for my mother and my brother,” Ms. Gurney said. “But I do want to help people.”

The aftermath of caregiving has left Ms. Gurney with a deep sense of being at peace, unexpectedly. “There were horrible times, but I can look back at them now and be glad that I provided a level of comfort to my mother and my brother,” she said. “It’s that which allows me to be at peace.”

My own experience ends in the same place, though the trajectory was different.

With my siblings, I became a caregiver at an early age for my mother, who had multiple sclerosis, and I lived throughout my childhood and teenage years with a deep fear of losing her.

When I was in college, each time we spoke and I hung up the phone, the fear would flame. What if something happened — a catastrophic fall, too many pills for pain that wouldn’t go away — and this time she didn’t bounce back? Every visit home ended with a difficult goodbye, followed by a long trail of anxiety and guilt.

Yet that fear of my young years was never realized. Yes, I lost Mom. But when she died, it was time, I had reached middle age, and I was ready.

She was an old woman then, in her 83rd year. Her endurance, her will to live, had been exceptional. But now it seemed everything in her body was breaking down. Being helped to the bathroom, getting dressed, even having the blanket adjusted over her in bed — agony. I knew then that the time I had dreaded all my life was at hand.

The end didn’t come right away, and I had some time to reflect. What came to mind was this: “You’ve suffered enough, Mom. It’s time for your suffering to be over. I’ve loved you and tried to do my best by you. I couldn’t protect you from the blows that life sent your way. I’m sorry.”

On the day of her death, Mom’s grandchildren came in, one by one, to bid her farewell. My brother, sister and I held her hand. I had a sense of ceremony and intimacy, suffused with honor. The honor came from acknowledging Mom’s long, hard journey, and from facing things squarely, encountering what it means to be human, in extremity.

A year later, on the anniversary of her death, I stood on a bridge crossing the Chicago River and had an extraordinary sense of time both collapsing and stretching into infinity all at once. It was a warm, sunny day, the water gleamed bright below and I felt Mom with me, amid all the beauty.

In the end, I was not left with the loss I had dreaded so much. What I felt was a sense of fullness, uncolored by fear.

I tell you this because during years of struggle, this may not seem possible, this sense of knowing you stood your ground with love and honor, this deep acceptance of all you did and left undone. But it is, and knowing this is one of the insights that followed my years of caregiving, which informs all the work I do here.

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