Overcoming Caregiver Reluctance
Discover how to manage feelings of hesitancy and self-doubt as a caregiver
Natalie Handy and her sisters were thrust into caregiving for their mom with Parkinson's disease after their dad died of a sudden heart attack in 2011. With busy careers and countless family responsibilities, none of the sisters immediately embraced caregiving and reluctantly signed up for this new role.
"We always thought our dad would take care of Mom until she passed away, so when he unexpectedly died we were all in shock and had to piece together a plan to help Mom," says Handy.
After a health crisis in 2019, Handy and her sisters Emilie and Jenefer Jane, known as "JJ," had to take control of their mom's affairs, set up power of attorney, and find her a facility in Florida to keep her safe.
Handy was also juggling caregiver responsibilities for her husband, Jason, who was diagnosed with late-stage head and neck cancer. She arranged for them to leave their home in Virginia and move to New York City for two months so he could enter a clinical trial through Memorial Sloan Kettering Cancer Center. All the time, she was working full-time and had recently been promoted to CEO at Intercept Health.
Handy was fortunate to have her two sisters to lean on. At Handy's urging, they decided to share their caregiving journey with others through a podcast, Confessions of a Reluctant Caregiver, that started in 2022.
New Yorker cartoonist Roz Chast chronicled her reluctance as an only-child caregiver to her parents in her award-winning graphic memoir, "Can't We Talk About Something More Pleasant?"
Because Chast did not have a strong bond with her parents, it made stepping in to help them that much harder. "My parents and I had a complicated relationship," she said in a phone interview with Next Avenue. "We loved each other, but we were not close and I was especially not close with my very domineering mother."
How do you accept this new responsibility and overcome frustration, self-doubt, anger, guilt, and resentment?
Reluctant caregivers arrive at their duties from different paths. According to a report from the National Alliance for Caregiving and AARP, more than half of family caregivers feel they had no choice in taking on their role. For some, like Chast, no one else can or will step up and take the lead in caring for a family member.
An early death or divorce means a person who ordinarily provided care can't be there. Maybe the reluctant caregiver can't walk away and is guilted into doing the job, leading to resentment. For others, reluctance is not because they don't care or want to step up, but it stems from self-doubt, fears, insecurities, the unknown and sometimes anger.
"When caring for a parent, it's not uncommon to have lingering feelings of resentment because of emotional or physical abuse, abandonment or family dysfunction," says Dr. Merle Griff, a former caregiver to her mom and husband and author of "Solace in the Storm."
Overcoming Reluctant Feelings
No matter where the feelings stem from, many caregivers can relate to feeling "reluctant" in their roles. How do you accept this new responsibility and overcome frustration, self-doubt, anger, guilt and resentment?
Handy says the first step is acknowledging that being reluctant is okay. "This often means the caregiver is dutiful, responsible, and committed to helping their family member even though it's not the role they want to play." She adds: "For a reluctant caregiver, the satisfaction is you haven't turned your back and you can take pride in that."
Griff says caregivers have two choices – either trying to resolve their feelings and make amends or turning their care to someone else such as another family member or hired help.
"You might have to come to terms with what [the reluctant person] did, and in some cases, acknowledge that they did the best they could do at the time," says Griff, founder and CEO of SarahCare, a network of adult day care centers throughout the United States. "Staying in conflict isn't going to work for anyone."
Professional therapy or counseling may be needed to address deep emotional issues. When someone doesn't have good health insurance and can't afford to see a psychologist or therapist, another helpful place to turn is support groups.
"Being part of a group is not for everyone, but support groups for caregivers are a great forum to hear from others," says Griff. "Support group members often share great suggestions and solutions on things that have or haven't worked."
Managing Self-Doubt
Jay Newton-Small became a caregiver overnight to her father when her mom suddenly died from a brain aneurysm in 2011. Her dad was diagnosed with Alzheimer's about ten years earlier and was cared for by her mom in Florida. Newton-Small had to move her dad into her townhouse in Washington, D.C., where she worked as a correspondent for TIME magazine.
"I never had dependents before and now I was responsible for my dad and I just jumped in because I didn't have a choice," says Newton-Small, CEO and founder of PlanAllies in New Mexico.
"When you're not a nurse and you don't know what you're doing, it's easy to feel reluctance."
Newton-Small moved her dad into a nearby community for older adults because he started getting lost in her neighborhood. The police had to issue a silver alert after he got lost one evening.
"I struggled a lot with feelings of guilt – 'am I doing a good job? Could I be doing more for my dad?' But I knew he would be safer living under professional care," Newton-Small says.
Griff was a confident caregiver to her husband but experienced self-doubt around taking care of some of his more technical medical needs, like cleaning his tracheostomy tube, which is placed in the throat to keep it open for breathing. "When you're not a nurse and you don't know what you're doing, it's easy to feel reluctance," she says.
Building her confidence to handle the tube took time, but Griff's approach was to take a video of the respiratory therapist doing the task. Griff would practice and then ask the therapist to watch her do it to ensure she did it correctly.
If being a primary caregiver is not an option, consider getting help through aides or nursing homes. Chast moved her parents out of their Brooklyn apartment to an assisted living facility closer to her home in Connecticut. Her parents weren't safe living alone because her dad was wandering around the apartment building, and her mom kept falling and ending up in the hospital.
After her dad passed away in 2007 and her mom's health started to decline, Chast hired a nurse named Goodie to stay with her mom round the clock. Chast considered moving her mom to a nursing home, but the cost of having a full-time nurse was about the same.
"Mom started eating better and perked up with Goodie's constant care," says Chast. "The two of them formed a unique bond."
Chast's mom passed away in 2009. "If I could have given my caregiving job to somebody else, I would have," she says. "But I couldn't have lived with myself if I turned my back on them just because it was inconvenient for me."
