Caring, Coping : Providers of Home Health Care Can Become Victims, Too

We “children” were older than 60 when Dad became seriously ill with Alzheimer’s disease. My friend was in her 50s when her husband evidenced the symptoms of Parkinson’s disease. Another friend was deep in her 70s when her longtime companion suffered the immobilizing effects of an earlier devastation of childhood polio.

Each of these situations required special, full-time care by a family member; all of these stories, in a variety of forms, are repeated over and over again in families around the world. Age-related illnesses, capable of changing many people’s lives, often strike without warning.

“You have to be brave to grow old,” says Bill Rupert of Solana Beach. Rupert, 88, has had Parkinson’s disease for a “long time; probably started more than 20 years ago.” His wife, Margery, who is nearly 80, is an artist with the quick mind of active maturity. Margery cares for and supports “Billy,” as she calls him. Because of a heart condition, however, she is unable to drive. So, although she is Bill’s care giver, he is her chauffeur.

Not all relationships are as symbiotic. But where there is disabling illness in a family, whether Parkinson’s, Alzheimer’s, diabetes, stroke, cancer or whatever, there is usually one person, most often a close relative, who assumes ultimate responsibility for daily care.

Chronic, debilitating illnesses require lengthy commitments of time, money and, above all, energy. The desire to keep loved ones near as long as possible, the need to maintain dignity and independence, plus the ever-escalating costs of institutional care often combine to make home care the locale of choice and family care the preferred mode.

Frequently, care givers end up sacrificing their own plans and even restructuring their lives. Most do so willingly and gracefully. Spouses often seem able to quickly adapt their normal routine of home management or job responsibility to accommodate the new requirements of nursing care.

Daughters take aging parents under their wings and frequently under their roofs; daughters-in-law pitch in selflessly. Sons and sons-in-law provide home care, too. According to a Newsweek survey last year, though, three-quarters of the care givers in these situations are women.

For a long time, the medical profession has recognized that those who provide care can become the single most vital linking to their patient’s well-being, comfort and safety. They are the healthy, helpful “alter egos” who assist in performing the normally simple daily tasks that have become difficult, sometimes impossible, for their beloved.

But care givers such as Margery Rupert are vitally aware of the danger of an endless, unbroken routine. She knows that she and Bill both depend on her continued good health and upbeat spirit. Margery paints every chance she gets. She is blessed with a talent and with the good sense to know how best to employ it. Painting is her hedge against becoming overwhelmed.

Only recently has it been recognized that care givers are vulnerable both emotionally and physically and are susceptible to burnout. If their personal needs for support, for the cooperation of other family members and for time away are not met, their value to the sick is diminished. In addition, the ones who provide care can, and often do, become hidden victims of the illness of the very person they are serving.

It is crucial for care givers to create or discover their means of finding respite and relief.

I met the Ruperts while on a one-week cruise in the Atlantic. They were among an organized group of passengers with Parkinson’s disease and their companions.

The people in the group deal every day with the issues of caring for ill family members. In this group, there were a number of husbands taking care of their ill wives.

Parkinson’s disease is caused by a gradual deterioration in nerve centers that control movement, thus affecting the normal ability to perform the requirements of daily life. Eventually, the disease can erode memory and mental functioning.

Rupert considers himself to be one of the lucky ones; he believes that his disease has reached a plateau and will not worsen. His mind is razor sharp; his muscles, though frequently slow in response, do allow him to move independently.

The shipboard program focused on care givers as well as patients. There were morning lectures, exercise classes and sharing time for all. And there were special meetings for the care givers.

The Ruperts stressed the importance of the meetings both to the victims of Parkinson’s and to the care givers. They underscored the importance of breaking the routine, of finding respite, of meeting others “in the same boat.”

Everyone needs alone time; our children call it “space.” Everyone needs a temporary change of scene, of routine, of responsibilities. A change of pace is refreshing. The cruise provided all of these. Above all, the trip made it possible to exchange ideas and experiences with others going through similar life situations.

Cruises are not inexpensive, but the Norwegian Cruise Line set a special rate for the Parkinson’s group and, in addition, made a contribution to the American Parkinson’s Disease Assn. Not everyone who needs a change can or will go on a cruise, but, for this group, it was an option that worked.

The opportunities for change in routing, fortunately, are numerous. On occasion, it will occur over a weekend, when another member of the family steps in to relieve the primary care giver. Occasionally, someone can be hired to take over for a brief period. And sometimes a trip provides the right change of scene.

Fortunately, we who live in North County have a host of community resources that are available to help relieve “care giver’s syndrome.” Many senior centers, hospitals and social agencies sponsor care giver and other support groups.

Here are a few of the organizations offering support:

General information for North County social and human care agencies is available at 740-0997 inland and 943-0997 coastal.

North County Seniors in Action, information and referrals, 941-3212.

Caregiver Groups/Support Groups, County Department of Health Services, 741-4461

Lifeline Caregivers, 726-4900

Parkinson’s Caregivers, Oceanside 729-4614; Escondido 741-3344; Fallbrook 728-6890; information on others 273-6763

Alzheimer’s Caregivers, Solana Beach 755-1717; Oceanside 433-9942; Escondido 480-2282.