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Taking care of caregivers
- April 18, 2002
by Eileen Beal

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Nearly one in four (i.e. 22 million) American households includes someone-usually a spouse or adult daughter-who is caring for an ill relative or friend age 50 or older, says a report from the Washington, DC-based Center for the Advancement of Health (CAH). Typically, caregiving responsibilities include physical tasks (bathing, shopping, etc.), technical tasks (administering injections, wound cleaning, etc.), and making health care decisions, such as transporting their loved one to an emergency room.

Despite the fact that almost half of these caregivers (47%) are employed, they are still putting in enough caregiver hours each week to provide almost $290 billion worth of free health care services-everything from overseeing medications to round-the-clock nursing-each year.

There is a cost attached to this "free" health care, however, says the CAH report. More than 15% of caregivers say they have emotional, physical, financial, and/or mental health problems that are directly related "to the burden of caregiving." The report also said that the most frustrated, exhausted, and depressed caregivers are spouses who are caring for a loved one in the final stage of Alzheimer's Disease. Not only are they living in an incredibly stressful environment, they have also lost their main source of social support.

A gradual process
Few caregivers are even aware of the fact that they are becoming a caregiver says Mary Ann Caston, vice president for Community/In-Home Services at Benjamin Rose, a health care and social service agency serving the needs of Cleveland-area seniors and their caregivers. "They don't see what they are doing as caregiving, they see it as simply doing what needs to be done-helping with the shopping, doing the laundry, making sure mom or dad or their spouse gets to medical appointments."

"Long before they realize a change-in many cases, a role reversal-has taken place," she adds, "they are caregivers."

Not only do most caregivers not realize they have become caregivers-and that they are experiencing mental and physical stresses that are putting their own well-being at risk-they also don't realize that there are services, programs, and/or support groups in their local community that can offer significant help with their caregiving responsibilities, says C.J. Fiordalis, the program coordinator at Fairhill Center. "Not only is there is a network of support services-adult day care, short and long term care options, assisted living programs," he says, "there are also pro-active hands-on educational programs."

Not surprisingly, education programs draw more caregivers than support groups, says Benjamin Rose's Caston. That's because, she says, "people know that when they come [to an education program] they are going to learn something new, something specific.to their needs."

Sometimes caregiver programs focus on one specific topic-for instance, how to find adult day services or the financial and legal responsibilities that come along with caregiving-says Suzi Kay, manager of the Family Caregiver Support Program at the Western Reserve Area Agency on Aging (WRAAA), the five-county federal agency addressing the needs and concerns of older people and their families. Many local social service agencies, Kay adds, offer these kinds of one-issue programs at no or minimal charge on a continuing basis and at times and places-senior centers, local libraries, etc.-that make them very accessible to those who need them.

Because caregiving impacts company bottom lines-due to employee absenteeism, poor job performance due to exhaustion, and employee turnover-caregiving programs are increasingly being done in the workplace. "Many employers are partnering with local agencies to do brown-bag and after-work programs," Kay explained, "because they are an easy and cost-effective benefit they can offer their employees."

Other programs weave together a group of related topics, which are taught by experts in the areas being covered. For instance, Fairhill Center's six-week School for Caregivers (next "class" begins July 25th), is based on a core curriculum that covers stress and time management strategies; home security and safety issues; the financial, legal, and ethical issues caregivers face; how to access community-based resources; strategies for managing behavior of those with Alzheimer's Disease and related dementias; and the importance of physical and nutritional health and self-care. "The health of the caregiver is paramount," explained Fiordalis, "because the caregiver is the care recipient's lifeline."

If that lifeline breaks-under the pressures of caregiving-the whole system breaks down.

Eileen Beal is a freelance healthcare writer specializing in geriatric issues. Successful Aging is provided by Benjamin Rose (www.benrose.org, a nonprofit health care and social service agency for older adults.

Source/Resource List
Community senior centers often present classes and/or workshops for those caring for elder parents, relatives, or loved ones. So do the following:

Alzheimer's Association
800-441-3322

Benjamin Rose Community/In-Home Services
216-791-8000

Catholic Charities Services
216-441-0111 or 800-869-6525 ext. 2460

Fairhill Center/School for Caregivers
216-421-1350/ext. 222

Jewish Family Services
216-292-3999

Western Reserve Area Agency on Aging/Family Caregiver Support Programs
216-621-8010 or 800-626-7277

Books
Caring for the Parents Who Cared for You , Kenneth P. Scileppi, MD
Home Healthcare Handbook , Gene LeBoeuf
Self-care for Caregivers: A 12 step approach , Pat Samples and Diane and Marvin Larsen
The 36-hour Day , Nancy L. Mace and Peter Rabins, MD
The Comfort of Home , Maria M. Meyer and Paula Derr, RN

Internet Sites
Cleveland Area Alzheimer's Association
www.alzclv.org

Children of Aging Parents (CAPS)
www.CAPS4caregivers.com

National Alliance for Caregiving
www.caregiving.org

National Association of Home Care
www.nahc.org

National Family Caregivers Association
www.nfcacares.org

The Caregivers Handbook (on-line manual) www.acsu.buffalo.edu/~drstall/hndbk0.html