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“What is it that caregivers don’t talk about with other people?”

This was the question that Kaiser Health News columnist Judith Graham posed during a discussion that featured a panel of experienced caregivers at the Kaiser Family Foundation in Washington, DC today.

The event began with a conversation between Graham and Arthur Kleinman, MD, a psychiatrist at Harvard University and social anthropologist who authored The Soul of Care, a book chronicling his experience as a caregiver for his wife through Alzheimer’s disease and the impact that the role had on the way he thinks about practicing medicine.

Dr. Kleinman explained that, despite his medical background, he faced a steep learning curve as a caregiver.

“I thought I knew it all and it was like a veil of ignorance had been lifted from my eyes through my experience as a family caregiver,” Dr. Kleinman explained.

Dr. Kleinman said that he became frustrated at the enormity of the task. A similar sentiment was shared by fellow panelist Rita Choula, who serves as Director of Caregiving projects at AARP’s Public Policy Institute and as a caregiver for her mother with frontotemporal dementia.

“My role in the family has always been the fixer and I couldn’t fix this,” said Choula.

Eventually, Choula’s family decided that they would not be able to continue caring for her mother at home. She felt judged by some people in her life who disagreed with the decision, but Choula explained that it was the right course for her family.

Caring for a loved one in their home can be made more viable through the support of home health aides. Panelist Sheldon Friedman, a board member at The Well Spouse Association, has served as a caregiver for his wife, who has multiple sclerosis, for nearly 50 years. Home health aides have played an important role in delivering hands-on care for Friedman’s wife.

“I’m essentially the CEO and administrator of Sheldon’s nursing home for one,” said Friedman.

Panelists also emphasized the need for caregivers to take care of themselves. Friedman joined a support group organized by The Well Spouse Association and described it as a lifesaver. Self-care can also come in the form of personal boundaries, developed for the benefit of the caregiver and the loved one receiving care. Panelist Barry Jacobs, a former caregiver for his mother, as well as psychologist and principal at Health Management Associates, found that his mother living in an apartment close to his family’s house allowed space for everyone involved.

Caregivers may also find healing through sharing their experience with others. Panelist Kimberly Stewart, a faculty clinical instructor at the University of Maryland, Baltimore, has served as her husband’s caregiver since he suffered an aneurysm in 2016. By speaking with other people about her experience, she was able to accept that her life had changed and was able to move forward.

“Even when things happen, life goes on,” Street said. “It has to go on.”

To watch a full recording of the event, please click here.

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