Former First Lady Rosalynn Carter said, “There are only four kinds of people in the world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” Her point: Caregiving is a nearly universal experience.
But in homes across the United States, a growing number of family caregivers face a heart-wrenching challenge: caring for loved ones who resist help or are noncompliant with medical advice. As the population ages, this issue is becoming more prevalent.
An estimated 53 million Americans provide unpaid care to an adult or child each year, according to AARP. Many of these caregivers face frustration, burnout, and a sense of helplessness as they struggle to balance their loved one’s autonomy with their desire to provide the best care possible.
Dennis (whose name has been shortened to protect his privacy), survived a stroke and now lives with cognitive disabilities and comorbidities. “Covid really messed him up,” says Amy, his daughter and primary caregiver, reflecting on how the lockdown worsened his health. The confinement drastically reduced Dennis’s mobility, leading to weight gain and further health complications.
But his refusal to attend essential medical appointments outside of dialysis has become a major source of concern for Amy and the rest of the family. “He’s just exhausted,” she says. The situation worsened when Dennis began refusing dialysis due to the physically taxing and psychologically distressing off-site transportation he needed to get there.
Noncompliance among care recipients can manifest in various ways. It can have serious health implications, particularly for those managing chronic conditions such as diabetes, heart disease, or dementia.
Liz O’Donnell, author of Working Daughter and a caregiving coach, highlights the prevalence of this issue. “There’s such a lack of education and understanding about the caregiving role, especially when it comes to dealing with noncompliance,” O’Donnell says. “Caregivers are often left to navigate these challenges on their own, which can be incredibly frustrating and isolating.”
Pam Dunwald, a board-certified patient advocate with Your Nurse Advocate Consulting and registered nurse with more than 40 years of experience, stresses the importance of a compassionate approach. “With aging adults, their final stage of growth and development involves grappling with the loss of independence,” Dunwald says. “They often resist changes because they are trying to hold onto that independence.”
She says that sometimes a third party, such as a professional advocate, can influence the care recipient more effectively than their own family members. She also emphasizes involving the aging adult in decision-making processes, which can result in better outcomes than unilateral decisions made by family members.
The emotional toll of caregiving, particularly when dealing with a noncompliant loved one, cannot be overstated. A survey by the National Alliance for Caregiving found that 21% of caregivers overall reported feeling highly stressed, while 36% of those caring for someone with dementia reported high levels of stress. Both O’Donnell and Dunwald encourage caregivers to prioritize their own well-being and seek support through various resources, including community programs and online support groups.
And as they do that, caregivers have to take care not to lose sight of their own health. “We are responsible for two lives — the life of the person we’re caring for and our own,” O’Donnell says.
A caregiver named Mary (name changed for privacy) learned that in caring for her mother Andrea, who suffered from a range of health issues, including congestive heart failure, chronic obstructive pulmonary disease (COPD), and lung cancer. Despite her complex health issues, Andrea was initially noncompliant with her treatment, making it difficult for Mary to care for her.
As an only child, Mary was her mother’s sole caregiver and had to balance her responsibilities as a mother of two young children, a wife, and a full-time accountant. “It’s hard taking care of someone, especially when it’s a parent, because that relationship is flipped on its head,” Mary says.
Andrea’s noncompliance extended beyond medical care to everyday life choices, such as diet. “She had some dietary restrictions for various reasons, but she would have my aunt prepare her something different, like lunch meats, which the doctor had explicitly forbidden,” Mary says. Mary’s exhaustion and frustration with enforcing these restrictions while respecting her mother’s autonomy created constant tension.
“You’re asking them to give up their independence,” Mary says. In that situation, she adds, “I might also fight [or] be a little bit noncompliant.”
Atul Gawande, MD, highlights a crucial point in his book Being Mortal. “As caregivers, we often prioritize safety above all else, but for our loved ones, autonomy is just as important.” If a parent of sound mind decides to refuse a particular treatment, caregivers must navigate the complex emotional terrain of respecting their loved one’s wishes while managing their own fears and concerns.
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