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How to Be a Caregiver for Someone Who Refuses to Care for Themself

Ways to avoid resentment when apathy, inaction or a ‘lifetime of bad decision-making’ exacerbates a loved one’s health problems

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When my husband came home from the hospital after the head injury he received in Iraq when a roadside bomb exploded, I worked to find the balance between creating “bubble wrap fences” and giving him a sense of independence.

He’d felt “trapped” for so long, tired of being mothered and hating all the focus on his health. But as he recovered, there was a kind of recklessness to his self-care, a rejection of my mothering when I’d suggest he drink more water or ask if he’d taken his medication.

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Resentment gathered like storm clouds. From my perspective, I was only trying to help, to improve his health so that he could live a full life. He simply wanted me to back off, and sometimes his definition of independence meant not putting his health first.

Scenarios like mine are common in caregiving, and in any relationship where the balance shifts after an illness or injury. But when a loved one openly chooses to be noncompliant on an ongoing basis, that can lead to frustration and resentment. Picture the loved one with lung disease who won’t quit smoking, or the person with diabetes eating a high-sugar diet. How does one continue to care for a loved one in these situations?

Picking your battles

Becky, 70, from Millville, New Jersey, met her boyfriend Mitch, 74, after her husband passed away. (We are withholding last names here and throughout this article for privacy purposes.)

When they met, Mitch had an existing disability from a back injury, but then a motorcycle accident left him with multiple injuries and chronic pain. A lingering infection sent him to the hospital, and when he returned home, life was very different. Now, due to injury and compounding illness, he sleeps in a hospital bed at home and Becky is his primary caregiver.

“It’s frustrating,” she says. “As soon as the PT leaves, he refuses to do any of the exercises with me. You don’t want to get angry or be the nag, because that doesn’t go anywhere.” Mitch relies on Becky to help him to the toilet, even though he can get up himself or use the commode.

“You pick your battles,” she says, “and when you add in a stubborn personality, it gets harder. He has to be the one who does the exercises. I can’t do that for him, but it’s the only way he will get some mobility back.”

Becky turns to her faith in God to keep positive, attending Bible study, walking and carving out time to read. “You have to have other things you can do besides taking care of your loved one,” she explains. Becky’s part-time job gets her out of the house and interacting with others. She makes a point on her daily walk to say good morning to people on the street and maybe start a short conversation.

A ‘delicate dance’

Pam,* 70, from Jacksonville, Florida, moved in with her mother when her father passed away. A few years later, after her brother died from ALS, her once independent mother, began to give up on caring for herself. “First, she’d ask me to wash her hair,” recalls Pam. “When I reminded her that she could do it herself, she would beg me to help.”

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Little by little, her mom, suffering from depression, began to give up other activities that Pam knew she could still do, from making meals to getting dressed. “It’s like she gave up and wanted me to do everything,” says Pam. “In the end, it was often easier doing things myself than making her do things I knew she could do.” Pam’s best advice is to try to realize the person you are caring for did not ask to be in the position they’re in. “I can’t say I coped extremely well,” she says. “But when you love someone, you do what you have to do.”

Amy Goyer, AARP’s family and caregiving expert, moderates the AARP Family Caregivers Discussion Group on Facebook, where she sees so many people sharing their heartaches and frustrations.

“It’s extremely difficult for family caregivers who are struggling to care for a family member or friend who they know didn’t take good care of themselves prior to becoming ill, or who refuse to do things that would help them feel better — and be easier to care for — now,” says Goyer. “It can affect a caregiver’s motivation and build resentment.”

As a longtime caregiver of multiple family members, including her late mother and father, she has personal experience with several family members who either didn’t adjust their diets or wouldn’t do exercises that would ease their pain in the long run.

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“As a caregiver, I had to accept the fact that I can’t make others do things,” says Goyer. “I can offer suggestions and be honest with them about my feelings, but I cannot change them. They have a right to make their own decisions, even if we perceive them as bad choices, and there’s a delicate dance between pushing a bit and pushing too far.”

The burden of solo caregivers

As an only child, Sam,* 50, from Sonoma, California, always understood he would be caring for his parents alone.

“We lived in a tumultuous state for most of my life, moving 15 times, usually for financial reasons, which was destabilizing,” he says. As he got older, Sam became the responsible child, and both parents leaned on him more and more for support, from financial assistance to caregiving. “You want to idolize your parents, but it’s hard not to feel angry that a lifetime of bad decision-making on their parts has led to their health issues,” he says.

Sam’s father smoked and had poor eating habits, which led to diabetes. He is also addicted to opioids, all of which has landed him in the hospital numerous times.

“His lack of care drove me nuts,” Sam says. “I’d get resources and set up appointments, and he wouldn’t go to the doctor. His edema would go untreated for too long, and instead of being proactive, he’d routinely end up in an ambulance headed to the ER.”

Instead of hammering his father with phrases like, “We wouldn’t be here if you’d taken care of yourself,” Sam focuses on what he can do going forward. “I tell myself that I can’t change him, but what I can do is try to make this hospital stay better and push to get him home faster,” he says. “Those are the kinds of things I had to focus on to not live in resentment.”

A stroke in May landed his father in the hospital again, and with all of his comorbidities, including lung disease, he began to fail. Palliative care was called in and then hospice, which was a game changer for Sam. Suddenly there were other people, professionals who could take over the tough conversations without emotion and try to understand his father’s health goals.

“I realized that other people’s voices had a much better impact than mine, especially as the adult child who had been there all along,” says Sam. “They are able to navigate tough conversations and take other ones off of my plate completely.”

Setting boundaries

Jennifer Guttman, M.D., a clinical psychologist in private practice in Pleasantville, New York, stresses the importance of communicating boundaries when you are caregiving, especially with those who are noncompliant.

“It’s important to maintain honest and transparent communication so that both of you understand and can try to hold space for the complicated nature of the other’s feelings,” says Guttman. “Sometimes just being ‘heard’ and ‘known’ can make a big difference, even when it doesn’t change the role or job requirements.”

She also advises caregivers to try not to just say yes to everything before they’ve determined whether there are others who could assist. “Asking for help is a sign of courage, not weakness, and delegating tasks is great for self-care,” says Guttman.

“When we’re taking care of people we love, they also want to see us taking care of ourselves, so be open with them about how we intend to do that and when we need time for it.”

As for Sam, he says he looks for the silver lining in this hard situation, which is ultimately heading toward the loss of his father. “I tell myself that this experience is forging the decisions I make now with my life and what I do with my body so that I will not put my own children in this position one day.”

*Last names have been omitted for privacy purposes

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