Health Update: Health Update: Is love enough? Former caregiver, sociologist says no in new book – What Experts Say– What Experts Say.
Handle with care: A caregiver’s story
Former caregiver David Cook reflects on the experience of caring for his dying wife and highlights the need for better help for other caregivers.
Laura Mauldin was 27 when she met the love of her life in 2005. Less than a year into their relationship, her partner’s cancer returned.
“It was simple, really,” Mauldin, a sociologist and disability scholar, wrote in her new book out Feb. 10, “In Sickness and in Health,” where she chronicles her own caregiving love story and those of others. “I was in love with her. I squeezed her hands and told her, ‘We will get through it.'”
But Mauldin soon found out that nothing about caregiving is simple. And the American health care system isn’t set up to help people get through it, Mauldin outlines in the book, by way of inaccessible health care, lack of caregiver supports, expensive treatments and an overall de-valuing of sick people and those with disabilities. Her love for her partner had nothing to do with the level of care Mauldin could provide − or the ultimately unbeatable strength of her partner’s disease.
Mauldin said she was hesitant to share that she wasn’t there when her partner died.
“There’s a romanticization of the idea of ‘the one,'” Mauldin told USA TODAY. “Because we don’t have robust social safety nets, that love that ‘the one’ has then gets transformed into unending, unrecognized labor that really threatens the stability of our relationships.”
Damian Turco, a family and divorce lawyer in Massachusetts, said it’s never one thing that leads a couple to separate. Usually, there’s an accumulation of issues that ends in divorce. But he has seen the burden of caregiving on one spouse become the tipping point for some couples.
“I think the more stressful and disruptive and emotionally draining it is − and the less of that strong, romantic, committed, loving feeling there is in the relationship − the more likely you’re just going to be pushed over that threshold and going to say, ‘You know what? I can’t do this,'” Turco said.
Caregiving is exhausting. Depending on the type of illness or disability their loved one has, family caregivers might need to quit their job to tend to their loved one’s needs, often including feeding, dressing and bathing them. According to the Caregiving in the U.S. report by AARP, caregivers spend, on average, 27 hours per week providing care, and a quarter of caregivers provide 40 or more hours per week. Nearly a quarter of caregivers say they have difficulty caring for themselves, and 64% report high emotional stress.
These caregiving duties, and the pressure that comes with them, often change the relationship between the caregiver and their loved one, Dr. Arif Kamal, chief patient officer for the American Cancer Society, previously told USA TODAY. Sometimes, Turco said, the patient’s condition might include symptoms that make them more irritable or aggressive, which can further erode the relationship.
The pressure can be more intense for women, Mauldin said, because women are socialized to be caregivers and told that if they don’t succeed as a caregiver, they are failing as a person. But caregivers need help, she said. And love isn’t enough fuel for caregivers to go on.
“I don’t think it’s OK to expect love to be able to do everything,” Mauldin said. “Love is not a plan. That’s not a plan for long-term care.”
Care events happen to everyone, at every age
Most people consider chronic illness, disability and cancer to be problems that come up only in old age, Turco said. But care incidents can happen at any time. He suggests couples talk about care early on, and ask their partner questions like, “What if things happen? How are we going to do that? How are we going to manage it?”
Mauldin was in her late 20s when she became a caregiver to her partner. Twenty years later, she said that was a big factor in her caregiving journey, because at the time she didn’t have anyone her age to talk to about her situation.
“I attended a support group and everybody in that group was 30 years older than me,” Mauldin said. “We know that it’s actually harder for (younger caregivers) to make sense of their role and try to adjust than it is for older people.”
LGBTQ+ caregivers, like Mauldin, are less likely to have help of any kind, according to the AARP Caregiving in the U.S. survey, and more often report negative effects of caregiving including financial, emotional and health-related impacts.
For Mauldin, it all became too much. After nearly four years of caring for her partner, Mauldin’s mental health collapsed. She fought for a home health aide, and eventually got one, but her partner felt betrayed. If Mauldin wasn’t “the one” to care for her nonstop, her partner didn’t want her around at all, Mauldin said. In the book, she wrote: “Loving her, it turned out in the end, had not been enough. It broke my heart.”
Mauldin said she’s carried a lot of shame and guilt about feeling like she failed as a caregiver.
“I couldn’t make sense of how much I loved this person, but also how much I could not go on. That didn’t make sense to me,” Mauldin said. “Because every message had been, if you love someone, you do this. That, if you are unable to do this, if you break under this pressure, then you can’t claim that you love them, that you really, actually love them.”
Mauldin doesn’t want other caregivers to feel this way, but she knows that they do. There’s shame in admitting that caregiving is too exhausting or difficult, she said. She encourages other caregivers to ask for help. Rely on friends, family, neighbors and other community members like church groups to pitch in, she said. Advocate for better social supports.
“I want people to know they’re not alone and that they don’t need to feel shame,” she said. “And that we can ask for more.”
Madeline Mitchell’s role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.