March/April 2012 Issue

Listening to Family Caregivers — What Matters Most?
By Lindsey Getz
Social Work Today
Vol. 12 No. 2 P. 28

Social Work Today spoke to several family caregivers about their physical, emotional, and financial needs and how professionals can better support them.

Robin King already was the primary caregiver for her mother when her husband, Marshall, suffered a heart attack on the Edmond, OK, couple’s anniversary. He had just handed his wife flowers and a card and kissed her on the cheek when he went into full cardiac arrest.

After he was taken to the hospital and put into a medically induced coma, the doctors told Robin King her husband probably would not wake up—and if he did, he’d be brain damaged. But Marshall King beat the odds. He woke up talking and with his cognitive functions intact. But Robin King says her husband was in poor health because of the heart attack, and his condition continued to deteriorate.

Not long after his heart attack, Marshall King was diagnosed with pancreatic cancer. Robin King’s mother had passed away by this point, but Robin King was once again thrust into the role of full-time caregiver. The round-the-clock caregiving for her husband often proved isolating and exhausting for Robin King and though she received support from home healthcare and hospice, she says she could have used support from a social worker.

“With my husband, the hospice social worker came out and did the required visit, but there was never contact again,” she explains. “The social worker who came out for my mother was very involved, and my mother loved it. I am a strong person and knew I could handle things OK, but there are certainly people who can’t, and I think it would be great for social workers to be able to better support those that really need it.”

Burdens to Bear
According to the National Alliance for Caregiving, in collaboration with AARP, it’s estimated that more than 65 million people—29% of the U.S. population—provide care for a chronically ill, disabled, or aged family member or friend during any given year and spend an average of 20 hours per week providing that care; 13% of family caregivers provide at least 40 hours of care per week. Yet there is growing evidence that many family caregivers are not getting the support they need to thrive.

The burdens on today’s family caregivers are heavy. A recent study conducted by the National Family Caregivers Association (NFCA), in conjunction with Allsup, Inc. (a nationwide provider of Social Security Disability Insurance representation and Medicare plan selection services), found that taking care of their own personal health, lack of respite care, and meeting monthly financial needs were the top concerns cited by the 1,579 family caregivers surveyed.

Family caregivers’ ability to care for themselves can be particularly challenging. Of the respondents to the NFCA/Allsup survey, 84% admitted they had concerns about their own personal health. “If a family caregiver falls apart, that’s not only a problem for him or her but also for the person they care for,” says Suzanne Mintz, president and CEO of the NFCA. “That’s why it’s so important that caregivers take better care of themselves. Making time for personal care has been shown to have a positive impact.”

If caregivers don’t take care of their personal health, they may experience caregiver burnout. “Caregiver burnout is real, and it’s a major concern,” says Teleshia Q. Brimmer, RSW, MSW, national family caregiver support program manager for the New Orleans Council on Aging. “It can lead to depression and other serious health issues. Social workers working with caregivers and their families need to not only realize that this is serious but must be able to recognize some of the signs. Social workers need to be prepared to reach out whether the caregiver asks for help or just shows they need it. Be prepared to suggest counseling or other places they can get assistance.”

P. J. Jordan, who cared for her husband following a rhinectomy (full removal of the nose) due to nasal cancer, experienced caregiver burnout and developed shingles as a result. When her husband, Mel, returned home following surgery, she was suddenly thrust into the role of full-time caregiver, which included medical responsibilities such as keeping his nasal cavity clean and handling regular bandaging.

When Mel Jordan first came home, P. J. Jordan covered all the mirrors with newspaper until her husband was “ready” to see himself. But throughout all this, she felt it was her duty to create a sense of normalcy. “That meant smiling and always acting like everything was fine even in moments where I really didn’t know what I was doing,” she says. “There was a time when the bandages were stuck and I didn’t know what to do, but I tried to look calm and act like I knew what to do even though inside I was panicking. Over time, that stress can really build up, and I did end up getting sick myself as a result.”

Mintz says social workers must be able to support caregivers, but they also need to know the best time to approach caregivers about utilizing available resources. “Giving people a lot of information when they’re in crisis is not the way to go,” she says. “The time of diagnosis is not the time to share a lot of information because everyone is still in shock. It’s best to let the family caregiver know you’re there for them when they’re ready.”

Need for Support, Respite, Buddies
Insufficient respite care was a concern of 83% of the NCFA/Allsup survey respondents. Carmen Beauchamp, who became the full-time caregiver for her mentally disabled sister following the passing of her parents, says that’s one of the hardest issues with which she struggles. Currently engaged to be married, Beauchamp says she never gets a break or any time alone. “If I want to go out with my fiancé, my sister comes with us,” says the Krum, TX, resident. “Her mental abilities are around those of a 3-year-old, so she can’t be left alone. I have to help bathe her and prepare her meals, and I rarely get a break. She hasn’t qualified for a program, and respite care is expensive. That’s my biggest struggle.”

To help people like Beauchamp with the challenges of caregiving, Brimmer says social workers should do their homework and be aware of any available services and programs they can suggest to caregivers. “Another great role for the social worker in helping alleviate some of the caregiver’s burden is to organize a family meeting,” Brimmer says. “Social workers need to encourage family support. I’ve worked with families where only one of the siblings is stepping up to help. A social worker may be able to facilitate team caregiving. Some siblings say they can’t handle seeing their parent sick, so suggest to them they help in another way. They can fix meals or pay a bill or two, even if they’re not the primary caregiver.”

Feelings of isolation are a common concern for family caregivers. In fact, 75% of survey respondents say they struggle with it. For Robin King, the isolation significantly impacted her. She says her husband was a strong and proud man who didn’t want his friends and family members to see him in poor condition. As a result, Robin King was often isolated as well.

Mintz, who is also the full-time caregiver to her husband, who was diagnosed with multiple sclerosis in 1974, says isolation is common for caregivers. They often think no one understands what they’re going through, that no one else can relate to their experience.

“Finding a buddy is one of the best cures for isolation,” says Mintz. “I believe support groups are important, but there’s also something about one-on-one interaction with a buddy that really helps. You can say things to each other that you might not say in a group and definitely wouldn’t say to a non-family caregiver. You can find a buddy through a support group or even through happenstance, such as talking to someone in the waiting room of a doctor’s office. Helping caregivers find peer support is also an excellent role for social workers. A social worker can connect two caregivers that are going through similar situations and who could benefit one another with support.”

Financial Factor
The NFCA/Allsup survey found that caregivers were very to somewhat concerned about several financial issues. Meeting monthly financial needs was a top financial concern, with 77% of respondents admitting it was a worry. Seventy-one percent also said they were concerned about the lack of paid home health support, and more than one-half were worried about their current employment situation and having adequate health insurance for themselves. On top of personal financial concerns, many caregivers are suddenly thrust into the role of handling their loved one’s finances as well.

“Unfortunately, it’s a lot of responsibility that falls on the individual caregiver’s shoulders,” says Paul Gada, new products director and personal financial planning director for Allsup. “Finding information and doing research becomes essential because you suddenly have to become a financial planning and tax expert on top of the medical expert you’ve already become as a caregiver to someone who has health issues. My advice is not to be afraid to seek out other professionals’ help.”

Financial resources and planning are important tools for social workers to share with caregivers—even just tips on better budgeting or food shopping. But Gada says social workers must remember there’s an emotional element that goes beyond the mechanics of financial planning: the fact that it’s uncomfortable for both the caregiver and the loved one to be in this situation.

The Reward
Though the burdens are heavy, many caregivers say the rewards are great, and there is an upside to the hardships. The caregivers we spoke with shared some of the positives that have come from the role, even if the burdens were greater many times. Robin King says, “I feel so blessed to have been able to take on this role. I had an opportunity to care for my loved ones and make their last days as comfortable as possible. That’s not something everyone gets.”

— Lindsey Getz is a freelance writer based in Royersford, PA, and is a frequent contributor to Social Work Today.

Men, the ‘Closet Caregivers’
In researching this piece on caregiving, it quickly became evident that finding a male caregiver to share his story was a challenge. Social Work Today suspected it wasn’t because they weren’t out there, and that something else must be at play. So we turned to Lenard Kaye, DSW, PhD, a professor of social work at the University of Maine School of Social Work and director of the University of Maine Center on Aging, who has researched male caregivers.

Kaye says as many as 40% of today’s caregivers are men. “But they’re definitely hidden,” he adds. “I’ve called them ‘closet caregivers,’ as that’s largely because they don’t identify themselves as such. They are performing the role of a caregiver, but they don’t like the term. It doesn’t resonate well with them or others.”

It’s not only men who don’t like identifying as a caregiver; society holds a preconceived notion that men can’t be caregivers, says Kaye. “It’s often believed by family and friends that men can’t handle the role as well as women,” he says. “But being a male caregiver is not an oxymoron. Men can do it—and they can do it as well as women. They may find it more difficult or have more strikes against them, but once they become involved, research shows they can do it really well.”

That was the case for Lloyd P. Francis, who retired from teaching and moved from San Francisco to his hometown of New Orleans to care for his mother full time. His top-notch care during his mother’s last 3 1/2 years of life proves that men can be excellent caregivers. Francis says caregiving is a tough role for anyone—not just men. “I don’t believe gender has anything to do with it,” he says. “It’s something that chose me—I didn’t choose it—and that would be the case for anyone, male or female. But the desire has to be there to do it. You have to be willing to take on the responsibility.”

Francis, whose mother lost both legs to diabetes and suffered from Alzheimer’s disease in her final days, says that despite the hardships, caregiving was a blessing. “I didn’t choose this role—it chose me,” he says. “But it was a wonderful journey and because I accepted it, I sleep well every night knowing she had the best possible care. I never once considered putting her in a facility, though she qualified for it in more ways than one. I learned how to do everything. I saw things I didn’t want to see and did things I didn’t think I could handle, but never once was it something I couldn’t do or wasn’t able to do. I learned to dress her, bathe her, change her catheter and feeding tube—I did it all. But having those years with my mother was a wonderful opportunity, and I can be at peace now that she’s gone. That’s because I know she was well cared for until the very end.”

Kaye says men like Francis are breaking the mold and showing the world that the caregiving role should not be defined by gender. “I call them the unsung heroes,” says Kaye. “These men are out there, but their numbers are underserved because they’re not coming forward.”

When it comes to supporting a caregiver, Kaye says social workers should realize that men do need to be supported in a different way. “Social workers need to recognize that men are likely coming up against more challenges and that they often need help reconciling those challenges,” says Kaye. “Men also struggle performing certain tasks more than others and might not feel comfortable at first, so social workers need to be sensitive to that fact. At first, men may be more comfortable delivering concrete forms of help like home repair or paying bills, and they may be less comfortable providing hands-on care such as bathing, toileting, or dressing. But men are capable of doing those tasks as well; they often just need more support. It’s important to help set up a comfortable relationship between the male caregiver and the loved one so that the caregiver can deliver what’s needed.”

— LG