November 13, 2024
Self-care for caregivers matters: Here’s why
A sharp increase in rates of adult caregiving is taking a mental and physical toll on family members.
Melissa Fisher was losing her hair. Clumps of it. It was one of the first signs that caring for her aging parents was taking a toll on her well-being.
Melissa Fisher was losing her hair. Clumps of it. It was one of the first signs that caring for her aging parents was taking a toll on her well-being.
“I thought something was really wrong with me,” said Fisher, who works on Kaiser Permanente’s member communications team in Portland, Oregon.
She worried she had a blood issue or other health condition. She made an appointment with Elizabeth Liles, MD, who asked Fisher what was going on in her life.
“I told her — all of it.” Fisher said.
Her father had been diagnosed with behavioral variant frontotemporal dementia, a progressive form of dementia. His erratic behaviors and care needs caused significant duress for the family.
Around the same time, her mother developed Parkinson’s disease and increasingly needed her help. Fisher found herself managing the complex care needs of both her parents.
“I didn’t connect my hair loss or sleeplessness with everything going on with my parents,” she said. “But Dr. Liles did.”
Burnout in the face of responsibility
“The demands of caring for a loved one can cause emotional and physical stress on the person doing the caring,” said Dr. Liles.
An estimated 53 million Americans age 18 or older are caregivers to one or more persons who need help due to aging, illness, or disability, according to Caregiving in the U.S. 2020, a study by the National Alliance for Caregiving and AARP.
Most are caring for an older person with chronic health conditions and disabilities.
“These caregivers might experience anger, sadness, exhaustion, or behavior changes,” said Dr. Liles. “Left unchecked, these can lead to other physical or mental health issues.”
That was the case for Fisher, who eventually began counseling at her doctor’s suggestion.
“Dr. Liles saw me,” Fisher said. “She recognized my grief, my pain, and my inability to care for myself while everything kept piling on me.”
Melissa Fisher shares a moment with her dad, who was diagnosed with frontotemporal dementia.
The importance of caring for the caregiver
Counseling helped Fisher step back from her parents’ needs and identify what she needed for herself. She realized that if she didn’t take care of herself first, she would never be able to keep helping her parents.
“I learned that I had to make moments for myself, no matter what was happening. I could sit outside with a cup of coffee, go for a walk, or even allow myself time to take a shower,” she said. “I had to reset.”
Fisher’s worries also eased when her parents became Kaiser Permanente members. Until then, they were in a health system where each service was separate.
“I was spending so much time piecing together their medical life,” she said. “I was calling provider after provider. I had little time to think of anything else.”
After they joined Kaiser Permanente, Fisher found it much more convenient to access her parents’ electronic health records, send messages to their doctors with questions, and order refills online.
Learning to receive
As her father’s disease progressed, Fisher learned to create new moments with him.
“I would find things for us to do together that allowed us to be ourselves,” she said. “I would play my dad’s favorite music and sit with him. Nothing else. Just sit and listen together.”
Fisher says it’s those final months before her father passed away that she cherishes the most.
“Through his illness my dad gave me the greatest gift,” she said. “He gave me the gift of learning to slow down, of learning to be quiet in the moment.”
Explore our caregiving resources and support to help you give your best to those you love — and take care of yourself along the way.
