Caring for the Caregiver Often Neglected

This article is the sequel to "Significant Memory loss a Symptom of Alzheimer's Disease," from the Fall 1994 Issue of Women's Health Matters.

Sprinkle a little guilt, spread some frustration, pile on the responsibilities, slice time in half, and you'll have a taste of the unsavory predicament facing the sandwich generation.

Coined for the growing number of Americans who are taking care of their aging parents and their children at the same time, the Sandwich Generation often finds that taking care of themselves gets shoved to the back burner.

But the more you neglect yourself, the less effective you'll be as a caregiver, warned The National Council on the Aging (NCOA) in Washington, D.C. "As a caregiver, one of the best things you can do for the patient is to take care of yourself," said Lisa Gabel, geriatric social worker at The Moses H. Cone Geriatric Assessment Center.

Women in particular find themselves in the role of caregiver, whether by choice, instinct or process of elimination. Of all caregivers, almost 80 percent are women, and more than half of those women are in the workforce. "Women have traditionally been socialized to play the nurturing role," said Peggy Matthews, Director of the Women's Education Center at The Women's Hospital. Already juggling the demands of career and family, these women add yet another layer to the Superwoman Syndrome, squeezing time to take care of an aging parent or spouse.

Taking care of someone with Alzheimer's Disease presents challenges of its own. For one, the disease is chronic and lasts, on average, about nine years -- plenty of time to wear down a caregiver's store of patience, good will and resources. Alzheimer's patients often look healthy, and, in fact, are healthy except for the mind and cognitive impairments. "It's frustrating dealing with someone who can't remember, who's asking you the same 50 questions a day," Gabel explained.

Caregivers also face a "fear of the unknown". How much worse is it going to get? What's going to be required of me? Matthews pointed out. "We're dealing with our own aging process, too, and that makes us scared."

One of the most agonizing decisions a caregiver faces is if, or when, to put the patient in a nursing home. "Taking care of someone with Alzheimer's is a 24-hour-a-day job," said Gabel. And whether to continue providing care at home or place the patient in a nursing home is a very personal decision. "I do encourage people not to look at a nursing home as the dreaded option, because in some situations that's what is better for the patient-- to provide them with 24-hour care, a routine schedule, social stimulation and activity," said Gabel.

With all of the time commitment involved in taking care of people with Alzheimer's, it's easy to see why many caregivers feel isolated. Not only is it difficult to carve out time to continue pursuing hobbies and activities, but friends and family tend to shy away, either for fear of being asked to help or simply from a lack of understanding about the disease.

Fortunately, many resources are available to help caregiver scope. "Caregivers dealing with Alzheimer's Disease really need to pull from support services, be it support groups, home health, adult day care, respite services or an extended rest home and/or nursing home. They really need to pull support from their family and friends," said Gabel.

"A person who is dealing with the kind of stress that comes with constant caregiving needs an outlet," said Matthews. According to the NCOA, most caregivers at some point feel tired, isolated, helpless, angry, resentful, and then guilty for having these negative feelings. While it's natural to have these feelings, the council explained, it's also important not to keep everything bottled up inside.

"Start looking into these support services before you even need the help," advised Gabel. If you can develop a plan before your situation becomes a crisis, you'll have a clearer head to evaluate your options. "If you don't plan, then you're planning to fail," added Matthews.

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