No Relief for the Caregiver: How Family Care Takes a Toll

Looking after an elderly relative can be a full-time job for those unwilling to call in help.

See also “Care for the Caregiver” and “A Caregiver Snapshot: Caregiving Statistics.”

Lankenau Medical Center’s Lisa Spoelker works with families to ease stress in home-based care situations. (Photo by Jared Castaldi)The statistics are surprising: More than 65 million people—30 percent of the country’s population—are actively caring for a “chronically ill, disabled or aged family member or friend during any given year.” According to a 2009 report compiled by the National Alliance for Caregiving and AARP, they spend 20 hours a week providing that care—and for 13 percent of the population, it’s 40 hours or more. The National Alliance for Caregiving and Evercare estimates that the dollar amount for free care provided to ill or disabled family members is $375 billion a year—twice that spent on homecare and nursing services combined.

Though it’s a responsibility many of us willingly choose to shoulder, the emotional, mental and even physical toll can be immeasurable. For some, responsibilities may be limited to checking in daily by phone or dropping off groceries. For others, though, the list of duties reads more like a full-time job description. And while the caregivers go about their duties, who is looking after them?

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“When you’re in the middle of a situation, you don’t realize the toll it’s taking until you get some separation from the event,” says Wanda Stonebraker, director of the Chester County Department of Aging Services. “It’s very draining, especially if you’re talking about a parent who’s gradually declining in health.”
 

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Stonebraker knows what it’s like first-hand: She helps her sister care for their mother. Typically, the burden falls on a child or spouse—most often a woman. Like others in her situation, Stonebraker’s sister also risks physical injury if her mom needs to be moved from one place to another. The financial implications are also a consideration, especially if caregivers must cut back their work schedule or abandon it completely.

Though a full-time, skilled homecare or nursing environment may seem like an ideal alternative, maintaining a sense of independence is why many choose the family-care route—even if it’s not realistic.

“You have to look at the individual and figure out what things they can and can’t do themselves, and if it’s safe for them to be at home,” says Lisa Spoelker, a case manager with Lankenau Medical Center’s social work department.

Spoelker and the rest of the team at Lankenau work with families in home-based care situations to assess the needs all around. “Many simply don’t want to be in nursing homes,” she says.
 

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Even those caregivers who are fully aware of the lifestyle changes involved experience burnout. “Especially with patients who have diminished mental capacities,” says Spoelker. “One thing to watch for is becoming frequently impatient with your family member or feeling like you have nothing left to give.”

Stonebraker says guilt is another intense emotion caregivers experience—one that’s often compounded when asking for help from other family members. “They may often feel that it’s because they’re not able to take care of Mom or Dad, and that there’s some type of deficit there,” Stonebraker says. “It could also be guilt induced by the person they’re caring for—if Mom or Dad asks, ‘Why are you leaving me?’ or ‘Is it too hard to care for me?’ when a person turns to the rest of the family for a break.”

Regardless, reaching out to other family members is a way to maintain balance, especially when it comes to scheduling breaks for exercise each day—or even a week or two off every few months to restore mental clarity and focus. “Unless you take good care of yourself, you can’t take good care of someone else,” says Stonebraker.

Organizing legal and medical paperwork, and coordinating end-of-life plans are preemptive measures that will make the most stressful and emotional circumstances less taxing. “One thing people in this situation will have to get used to is accepting others’ help,” says Spoelker. “Never, ever turn down the offer if someone else wants to help.”

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See page 4 for “Care for the Caregiver” and “A Caregiver Snapshot: Caregiving Statistics.”
 

A Caregiver Snapshot: Caregiving Statistics

The most common reasons for family care are old age, Alzheimer’s disease or another form of dementia, cancer, heart disease, and stroke.


30% are female and 48 years of age (on average)
61 is the typical age of a caregiver—and most are female
30% of female caregivers look after two or more people
36% of all family caregiving situations involve a child looking after a parent
51% of care recipients live in their own homes
29% live with the caregiver
23% of those who’ve provided care for more than five years describe their health as fair to poor

Sources: National Alliance for Caregiving and AARP
 

Care for the Caregiver

The Chester County Department of Aging Services’ GrandFamily Support Group features general discussion among participants, plus guest speakers on topics like homecare, healthy caregiver habits and more. Children’s activities and snacks are provided. The group offers three sessions this fall and another three next spring. Visit chesco.org/aging.

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