Caregiver Connection
Older woman looking out a window

When adults receiving care feel like a burden

Posted 01/22/2019 by Fallon Health

By Emily Lemire, M.S.W.

Burden. That’s a charged word in the caregiver community. No matter how difficult it is to help the person in your care, you want them to feel that you’re managing just fine. And you don’t want them to feel like a burden to you.

The tricky part is that, very often, the person you’re taking care of knows how hard it is. Whether or not they can articulate their understanding, they know you’ve given up social activities, cut back on work and spent money out of your savings account. They know you’re tired at the end of the day and that you’re still tired when you wake up in the morning. They know they’ll continue to decline and become more dependent on you as they do.

As a social worker, I spend a lot of time working with older adults who realize they’re causing those complications in their loved one’s lives. Some of them appear resistant to their caregivers’ efforts to help them—when they’re really trying to hold on to a little bit of independence and reduce the effect of their needs on their caregivers.

Feeling like a burden

Most can’t or don’t spell out those feelings, but I’ve worked with some who freely use the word burden to describe themselves in relation to their caregivers. Ray, 79, is one of them. He has serious chronic health conditions and needs extensive support from his wife and other caregivers.

“My wife won’t say it, but I see she’s tired,” he says. “She does so much for me. She’s done things for me that I would never expect to have another person do.

Ray knows that his frustration with losing independence can make him prickly.

“I know I’m a burden to her. I’m not an easy man to take care of,” he says. “I get frustrated, and I take it out on her.”

Ray has a great ability to describe his feelings about not being able to drive, about losing independence, and about his wife’s tendency to tell him what to do.

“She’s likes to get things done, keep things moving,” he says. “But the way she says things to me, it sounds like she’s giving me orders. I never liked taking orders, even when I was in the armed forces.”

Ray’s friend Doris, who also relies on caregivers, is quick to remind him that his wife means well and takes care of him out of love. He knows that. But it still irks him.

“It makes it sound like I’m an idiot,” says Ray. “I know she doesn’t mean anything by it, but it’s still hard.”

Being aware of physical and cognitive loss

At 82, Doris now resides in congregate housing—her own bedroom and a common area shared with seven other people. She goes to adult day health several times a week to enjoy some social time and get her medical care.

“I was so used to being independent. It’s hard for me to ask for help, to depend on other people,” she says, noting that hip surgery limits her mobility. If she needs a ride, she has to wait until her daughter or a friend has time to drive her. “I used to be the one who took care of everyone else.”

Like many people with mild or early-stage dementia, Doris is aware that she has some memory loss. That awareness doesn’t prevent her from needing to ask the same question repeatedly. But it does mean that she gets frustrated and upset when a caregiver says, “I already told you that.”

That conflict is just one that brings a sense of loss that she can’t always express. She doesn’t want to cause stress for her loved ones, but very much wants to be part of the conversation and play a role in their lives.

“If I make suggestions, it seems like they get so angry sometimes. I know they’re adults and can make their own decisions,” she says. “I just want to be part of their lives, as a mother, grandmother and great-grandmother. And I get offended when they get angry. It’s hard for me that they don’t want my advice. They all have their families, and I want to be part of that.”

Accepting changes

Many of the people I work with live with family members, including Ken, 69, who is paralyzed. He lives at home with his wife, even after having four strokes in 10 years. Not being able to communicate easily or move around on his own is incredibly frustrating for him.

“It’s so annoying,” he says. But he has great concern for his wife. Even though his grown children visit him each weekend, Ken says she’s “tired all the time.”

His advice to caregivers? “Don’t do it alone.”

I agree with that, and so does Doris. As a caregiver, you need to seek the support you need from professionals, family and friends so you can help your loved one over the long term. Doris is also quick to suggest trying to see the point of view of the person in need of care.

“Don’t get upset if I say something or ask a question more than once. I’m just concerned or making conversation. If I’ve already told you, can you just say okay?” she says. “Don’t remind me that I’ve forgotten. It upsets me. Can you just accept how I’ve changed?”

It’s a simple question, but it’s difficult to answer, whether you’re the one receiving care or giving it. All you can do is keep trying to accept each change as it comes and being as understanding as you can.

Emily Lemire, M.S.W., is Manager of Social Work for Fallon Health’s Summit ElderCare program in Lowell, Massachusetts.

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