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Caregivers Need Care, Too

November is National Family Caregivers Month, a time to acknowledge the contribution made by selfless individuals

SUNDAY, Nov. 11, 2001 (HealthDayNews) -- Isolation. Financial troubles. Sleep deprivation. These are just some of the problems facing the more than 50 million Americans who care at home for family members who are disabled, chronically ill or elderly.

Although they're an indispensable part of the country's health-care system, family caregivers don't receive enough recognition or support from government or health officials, says Suzanne Mintz, president and co-founder of the National Family Caregivers Association (NFCA).

Family caregivers provide 80 percent of all home-care services in the United States, and that care carries an estimated value of $196 billion annually. That compares to $115 billion for paid home care and nursing-home services combined, the NFCA says.

The vital contribution of family caregivers is being celebrated during National Family Caregivers Month in November. The theme for the month is "Share the Caring," which focuses on the need for caregivers to reach out for help and for friends, and to ask other family members, employers, communities and governments to help provide assistance.

"There are all these impacts that affect every layer of your life" when you're a family caregiver, Mintz says.

It can be a terrible financial drain. Families providing in-home care for a relative spend more than four times as much on out-of-pocket medical expenses than other families.

There's also the potential for a serious money crisis if the person who requires care was the family's primary breadwinner, or if the person providing care has to stop working, reduce her hours or turn down job promotions.

Many family caregivers suffer health problems that range from depression and sleep deprivation to stress and anxiety, along with back problems from the difficult physical duties involved in the care-giving.

There's also an impact on relationships with friends and other people outside the home.

"Isolation is considered one of the most daunting problems faced by family caregivers themselves," Mintz says.

"You feel separated from other people, that your problems are not their problems, that they don't understand. And if you're so busy care-giving and working and responding to other family issues, by definition you just don't have a lot of time to interact with others," she says.

Kathleen O'Brien is vice president for program services for the Alzheimer's Association in Chicago.

"There are a lot of emotional demands, especially with somebody who's dealing with somebody with a chronic disease like Alzheimer's disease, where they're losing the ability to take care of themselves and you're literally watching that person lose the essence of who they are," she says.

O'Brien and Mintz say it's vital that caregivers seek information about their loved one's condition, as well as support groups, resources and assistance programs. For example, if you're caring for someone with Alzheimer's disease, you can contact your local Alzheimer's Association chapter.

The Internet is another good resource to find information and make contact with organizations that can provide advice and assistance, Mintz says.

Caregivers also need to ask friends, neighbors and others for help so they can take a break from the strains of looking after a loved one. Mintz says caregivers must understand that being able to take time off is essential if they want to continue caring for their family member.

Advocacy is another way of coping.

"Many times families are very frustrated and angry with what's happening with the disease and the disease process, and we want to encourage families to channel that anger and that frustration into a positive direction," O'Brien says.

How can they do that? By getting involved in policy decisions and making state and federal lawmakers aware of the issues confronting family caregivers, she adds.

What To Do

The NFCA says more than one-quarter of American adults have provided care to a family member or friend during the last year. For more information about resources and support, visit the National Family Caregivers Association Web site.

If you're providing care at home for someone with Alzheimer's disease, there is information for you at the Alzheimer's Association.

SOURCES: Interviews with Suzanne Mintz, B.A., M.S., president and co-founder, National Family Caregivers Association, Kensington, Md.; Kathleen O'Brien, vice president, program services, Alzheimer's Association, Chicago
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