As Julie Mayer, PsyD, faced the emotional toll of losing her father to vascular dementia, and her mom just 15 months earlier, a new crisis emerged. Her in-laws in Florida needed help as they faced bankruptcy, and so Mayer, now 60, and her husband, Barry Jacobs, PsyD, now 66, both clinical psychologists, moved them into a condo closer to their home in the Philadelphia area in 2010.
Mayer's father-in-law, who had always been independent, had started to show signs of dementia and became increasingly difficult for her mother-in-law to care for. Mayer jumped in, spending countless hours managing her in-laws’ finances, cooking for them, and making sure they had the support they needed—all while raising her own children and running her psychology practice. Despite her exhaustion and reluctance, and still grieving the loss of her own parents, Mayer felt it was her responsibility to step up. Her father-in-law's condition worsened, and they eventually moved him into a skilled nursing facility, navigating the complexities of Medicaid to make it happen.
“Despite my reluctance, I wanted to do the right thing. I wanted to be the person that's the best version of myself who does the things that need to get done,” says Mayer. Through her practice, she encourages other caregivers to think about how they want to look back on their decisions, emphasizing that despite the hardship of caregiving, doing the right thing is something to be proud of.
People who initially hesitate to take over caregiving duties, like Mayer, come to those roles in various ways. Some believe they have little choice but to assume the responsibility. For others, their hesitation doesn't stem from lack of desire to care for another person but rather from insecurities and feelings of guilt, grief, doubt, and fear.
Reluctant caregiving, sometimes referred to as no-choice caregiving, can develop from a profound sense of sadness or grief as caregivers watch their life circumstances change and feel overwhelmed about the prospect of managing someone else's needs.
“Most people in caregiving roles experience some level of resentment, and with that often comes guilt,” says Daniel C. Potts, MD, FAAN, a neurologist at the Tuscaloosa VA Medical Center in Alabama. “I believe acknowledging these feelings is important.”
In a 2020 report by the National Alliance for Caregiving and AARP, more than half of caregivers felt they had no choice but to take on the responsibility. “Caregiving typically requires significant lifestyle adjustments—potentially impacting one's career trajectory, personal relationships, and financial stability,” says Jason Resendez, president and CEO of the National Alliance for Caregiving in Washington, D.C.
He adds that many caregivers fear they lack the necessary skills or knowledge to provide proper care. Time commitment is another major concern—caregiving can be unpredictable in duration and intensity. “Some people are worried about changing relationship dynamics with the care recipient, especially if roles are reversed between parent and child,” says Resendez.
Coping with Reluctance
How, then, can caregivers embrace this responsibility and overcome feelings of frustration, self-doubt, anger, guilt, and resentment?
Natalie Handy, co-host of the podcast Confessions of a Reluctant Caregiver, emphasizes that the first step is recognizing that it's normal to feel reluctant. “Being a caregiver may not be the role that you want to take on, but acknowledging feelings of hesitation and reluctance means that you are taking responsibility and [are] committed to helping a family member in whatever way you can help."
After her father's sudden death in 2011, Handy, then 35, and her sisters took over caregiving duties for their mother, who has Parkinson's disease. They had always assumed that their dad would take care of their mom, so they were unprepared and had to devise a new plan.
For years, their mom could live independently, but in 2019, following a health crisis, they took control of her affairs, including setting up power of attorney and finding a care facility. At the same time, Handy juggled caregiving for her husband, who had a type of head and neck cancer, and her full-time job as the recently promoted CEO of Intercept Health. Handy felt fortunate to have her two sisters to lean on. At Handy's urging, she and her older sister, J.J., decided to share their caregiving journey with others through their podcast, which launched in 2023.
Mayer acknowledges that she felt angry, resentful, frustrated, and disappointed in her mother-in-law's behavior because she didn't step up to take care of her husband or their financial stability. “I also knew I was doing the right thing and would look back on it and be able to say I felt good that I went through all that and I did what needed to be done.”
Mayer says talk therapy with a professional can make a big difference. “Counseling can offer essential help in managing these emotions and building effective coping strategies,” says Mayer, co-author of the book AARP Meditation for Caregivers (Balance, 2016).
Building confidence through caregiver education is essential. “Breaking down caregiving tasks into smaller, manageable steps helps prevent becoming overwhelmed, and creating a schedule with regular breaks ensures necessary self-care time,” says Resendez.
“Many caregivers also grapple with anger, particularly when other family members don't step up to help share the burden,” says Resendez. “These emotions often coexist and fluctuate over time, creating a challenging emotional landscape for those thrust into caregiving roles.”
After caring for his parents, both of whom died from Alzheimer's disease, Dr. Potts and his wife now look after a dear friend with early-stage Alzheimer's disease who has no family to help him.
“Caring for someone who isn't a family member can present unique challenges, especially when Alzheimer's disease is involved,” says Dr. Potts. “This experience has given me a deeper empathy for those in similar situations. It's a sad reality, but there are many others in similar situations, and it underscores the importance of recognizing these struggles and forces friends to decide how they are going to show up.”
Set Boundaries
It's crucial to establish a clear understanding of boundaries and limitations. These will often change over time, and it's important to be flexible and adaptable as the care recipients’ needs change.
“Setting boundaries early on helps prevent feelings of anger and frustration from escalating,” says Mayer. “It's about knowing what you can handle and seeking support when needed.”
Many families turn to home health aides and home care nurses for assistance with a wide variety of services. Finding the right person doesn't happen immediately and requires working with different agencies or aides to ensure no communication problems or personality conflicts exist.
When dealing with parents or spouses who were physically or mentally abusive, family caregivers must establish even more guardrails. Especially in cases of physical abuse, it's important to understand that it's okay to avoid situations in which you might have to help them with bathing, dressing, or using the toilet.
“In that case, you might handle other responsibilities, like managing finances, cooking, or arranging care,” says Mayer. “When it comes to physical care, if you're not comfortable, that's okay. What matters is recognizing and respecting your own limits.”
Susanne White, founder of Caregiver Warrior in Port St. Lucie, FL, had a difficult relationship with her mom since childhood. They knew how to push each other's buttons. When White's dad asked her to help him care for her mom, who was 84 when she started to show signs of dementia about 20 years ago, she immediately said yes but with trepidation, knowing that it wasn't going to be easy.
“My boundaries were not task-oriented but more about personal interactions. I had to limit how much time I spent with my mom on the phone or in person, especially in the beginning of her dementia journey,” says White, author of Self-Care for Caregivers: A Practical Guide to Caring for You While You Care for Your Loved One (Adams Media, 2022). “When she started to slip away and her personality changed, it became easier to be around her.”
White compares setting boundaries to wearing SWAT gear. “Everyone's ‘SWAT gear’ looks different, but the protection that caregivers need is something that they learn along the way. If we walk through life knowing how to set boundaries, understanding our needs and desires, and not worrying about others’ opinions, we become better equipped. When we prioritize our well-being, relationships, and self-care, it becomes easier to handle the challenges of caregiving.”
Prioritizing Wellness
Handy has produced more than 100 podcast episodes and interviewed some of the brightest minds in the caregiving field, and most repeat the same message: self-care is critical to coping with feelings of reluctance. She says it will look different for every person, from 10-minute breaks to a respite weekend.
“The self-care interventions and strategies that people use vary based on personal preference but lean into activities that involve being outdoors; movement, such as yoga; meditation; exercise; time spent with others; quiet time to themselves; listening to music; journaling; and even taking a bath or shower to help with self-regulation,” says Handy.
Resendez recommends sharing responsibilities by involving other family members and considering using respite care services to prevent burnout when possible.
Mayer suggests connecting with other caregivers through support groups, which offer “the opportunity to talk to others who truly understand your situation and can offer empathy and creative ideas for coping.” Other community organizations—such as church groups, national nonprofits like the Alzheimer's Association, and local aging councils—also can provide resources and support.
Living Values
When Mayer and her husband decided to move her in-laws nearby, it was not just about providing them with care—it was also about using the experience to teach their children the importance of family. “At the time, we had teenage kids in the house, and we saw this as a unique opportunity to show them what it truly means to take care of family.”
Their daughter, who went off to college not long after, didn't have the same day-to-day involvement, but their son formed a close bond with his grandmother. “He built a meaningful relationship with her, and she, in turn, was great with him. There was no conflict, as he was simply her grandchild.”
In 1990, Heidi McCann met Curtis Roger Vance, who eventually became her first love and first heartbreak. Their relationship had ups and downs, but her commitment to him deepened after Vance was suddenly diagnosed with amyotrophic lateral sclerosis (ALS) at age 25 in 1998. She never signed up to be his caregiver at 23 years old, but she also never considered leaving his side. Despite Vance's reluctance to get married, they tied the knot 22 days before he died.
McCann and Mayer both learned to acknowledge the challenges their loved ones faced. “Curtis's strength during his ALS battle was truly remarkable,” says McCann, now 50, who chronicled their story in the book Whatever the Future Holds (Green Heart Living Press, 2022). “Despite the immense challenge, he remained incredibly optimistic and social, inviting others into our home for healing circles and community gathering. People who had gone through their own struggles often left feeling better, and Curtis found great strength in knowing that his battle was helping others heal as well.”
Focus on the Positive
It's easy to focus on the negatives and hardships, and that's okay once in a while, experts say. But it's also vital to focus on the positive aspects of caregiving, not just for the patient but for the caregiver, too.
White worked hard to self-reflect and examine her patterns of behavior with her mom. “Eventually I was able to have some precious time. I could have chosen to be miserable, but I chose to work at our relationship and find some good in it.”
Dr. Potts, co-author with Marie Marley, PhD, of Finding Joy in Alzheimer's: New Hope for Caregivers (CreateSpace Independent Publishing Platform, 2015), says most caregivers he has met do have good intentions. “We all have bad days once in a while, but caregiving can either bring out the best or the worst in us, depending on the lens through which we view it. It's about choosing to focus on the positive aspects and embracing the experience with the right attitude. It's possible for caregiving to be a fulfilling and uplifting journey.”
Acknowledge and recognize your challenging feelings, Resendez says, “but ultimately try to focus on the positive aspects of caregiving while still honoring the tough times. This balance is crucial for long-term emotional well-being.”
In McCann's memoir, she reflects on that difficult year when she thought her perfect life was collapsing around her. With years of reflection, and distance with a second husband and family, McCann remembers the inner strength she found during the overwhelming experience.
“Why would I leave someone I loved so deeply, regardless of the circumstances?” McCann asks. “I realized the depth of my commitment to him and found purpose not only in caregiving but in supporting him, even when it felt like our world was falling apart.”
Resources for Caregivers
