Feeling Grief, Relief, and Guilt as Caregiving Ends

Health Writer
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When Jack Stevenson retired from his position as a vice president of a beverage distribution company, all he thought about were beachfront vacations and golf outings with his wife, Carol. But just months later, Carol was diagnosed with stage IV ovarian cancer.

Suddently, instead of days filled with leisurely strolls along the shoreline, he spent his time in surgery waiting rooms, chemo centers, and pharmacies.

“I didn’t mind, although it was definitely not what we had expected for retirement,” he recalls. “It just became the new normal, and it was fine, because it was what needed to be done.”

Caregiving guilt

For the next four years, his caregiving duties became more extensive as the cancer advanced and Carol spent the majority of her days recuperating from chemo sessions.

Then, just as it seemed she would go into remission, a bowel obstruction became infected, making a routine hospital stay her last. Jack was devastated when she died. But mixed in with the grief and loss he experienced a new sensation: relief. And that brought waves of guilt, along with uncertainty about how to fill his days.

“I’d wake up and think, what am I supposed to do now?” he remembers. “Without doctor visits or errands for Carol, there was an emptiness that was difficult to get over. I felt like I was a caregiver with no one to care for, so who was I?”

Common feelings for caregivers

The mix of relief, guilt, and loss that Jack experienced is very common for caregivers when caregiving ends — and it can happen not just with death, but also if a loved one goes into an assisted living facility or is cared for by someone else, according to Jennifer Gentile, Psy.D., a psychologist who treats patients through the telehealth app LiveHealth Online.

“The feeling of loss comes not only for the individual, but also for the loss of the role of caregiver,” she says, adding that there may be resentment if the caregiver feels that others discount the contribution that the caregiver made to the individual’s life.

Just as Jack found, caregivers can feel that they suddenly lose a sense of purpose, and Gentile says this often happens because caregivers feel a deep connection to the “greater cause” of caregiving itself.

Moving through the  caregiving transition

For Jack, what seemed to help the most as he shifted from caring for Carol to living on his own was a robust social network of friends that filled up his schedule almost immediately.

He jokes that he didn’t cook his own dinner for six months, and even when he did, it was just reheating casseroles that friends had brought over. Gradually, he began to shift toward caring for himself with the same tenderness and focus that he’d once shown to his wife.

Relying on social connections is vital, and it’s important to build those relationships before caregiving concludes, says Cynthia Epstein L.C.S.W., a social worker at New York University Langone Health. This is often part of the discussion when someone receives a diagnosis of dementia or Alzheimer’s, she says, but it should be part of any caregiving arrangement, no matter what the duration or medical condition.

“Caregivers need support, both during caregiving and after, but so many people are reluctant to ask for help,” she says. “A good step would be to recognize what you, as a caregiver, need for your own health and be honest about how you’re feeling.”

Making time for personal hobbies or social events before the end of a caregiving relationship can help ease the transition.

But if that strategy isn’t possible, Epstein suggests recognizing the feelings of loss, sadness, frustration, and relief — but also looking forward and embracing opportunities to reconnect with friends and restart former activities.

“Even in cases of profound loss and sadness, we’ve seen caregivers transition through to investing in their own lives again,” Epstein says.

See more helpful articles:

5 Ways to Stay Healthy as a Caregiver

You Are Not Alone: Caregivers Share Their Experiences and Insights

7 Suggestions for Caregivers’ Self Care

Dementia Death and Conflicting Emotions

Dementia Caregivers Grief Soul Deep, Defies Labeling