Support for Those Who Care for the Elderly at Home

For Anne Thorpe of Claremont, a former librarian in her middle years, the nitty-gritty, day-by-day responsibility of caring for her 95-year-old mother in Thorpe’s own home is like “living in the desert--you learn to notice and appreciate the smallest things.”

To Dr. Betty Hartford, an authority on aging and former director (now retired) of the USC School of Gerontology, the determination of more and more children to take their aged parents into their homes and keep them out of institutions is further evidence of America’s gradual return to the extended family idea and away from the nuclear family concept.

A Large Drama

Thorpe and Hartford are but two players in a much larger drama being staged all over the state and nation in which care-givers and professionals are beginning to share their experiences in order to make care-giving more effective and positive--and to help those giving the private care to survive the pressures it entails.

Locally, this linkage was formalized into a four-session course last month that was organized by HomeCare, a nonprofit agency administered through Claremont Manor, a retirement community owned by Pacific Homes. The course, “Caring for Your Aging Relatives at Home,” was offered free by Mt. San Antonio College on four Saturdays. This linking of professionals and care-givers is also the basis for the formation of smaller support groups in a kind of “care-givers anonymous” setting in which the sometime overwrought, over-tired “giver” can refuel by ventilating and sharing feelings with others and with professionals in the aging field.

While each care-giving situation has similarities to others, each is peculiarly its own because of the family constellation. And, according to Hartford, this can either be a time of growth for everyone involved or for “all of the unresolved family conflicts to be intensified.”

Some Never Fit

“The fact is that some people never would fit together in such a situation, and the family has to recognize that,” she continued. “But for those who think they can, there are ways of approach that can make this time a growing, upbeat experience.”

As she explained, the growth in the number of younger persons caring for relatives is due to several factors: a longer life span (for example, 35,000 Americans are now over 100), new restrictions on the length of hospital stay, rising costs of professional care and a general aversion to convalescent homes, especially for kin--except as a last resort.

The HomeCare course is aimed to open “ways of approach” that Hartford mentioned. During the first session, she and Jan Hightower RN, director of HomeCare Services, described the psychological and physical aspects of the aging process to a mixed audience of care-givers, potential care-givers and fellow professionals.

Both speakers stressed the inter-relationship of physical and psychological factors, agreeing that many of the “he or she’s just old” symptoms are not so much the effects of aging but of boredom, lack of opportunity to keep the mind busy and feeling unneeded.

Said Hartford: “Those in their seventh, eighth or ninth decade have already proved they are survivors, with toughness and a flexibility to the changes in their lives. These are characteristics to build on in the care-giving environment.”

Subsequent sessions of the course identified specific medically related help for the care-giver (from equipment to nutritional counseling to how to talk to your physician or pharmacist); other community resources (such as Meals on Wheels, legal advice on Medicare, housekeeping and shopping services, etc.); and the spiritual/social aspects of care-giving (how to meet the deeper needs of both care-taker and -giver).

To bring all of these aspects home on a more personalized basis, three care-givers recently sat together with Hightower and other HomeCare staff members in a support group session and vividly revealed the similarities and differences in their care-giving situations. Care-givers participating were Anne Thorpe; Dorothy Bailey of Ontario, who cares for her 96-year-old mother; and Nicky Blackman of San Dimas, whose husband, 77, is in the last stages of emphysema.

Similarities, of course, are more obvious: The word terminal is omnipresent and won’t go away; the prognosis is for a progressive physical weakening causing more dependence and requiring more care; and there is an accompanying psychological and emotional snowballing effect on the care-giver and other members of the family.

Differences, and how they are met, are more telling. The session itself had a metamorphosis. At the beginning and end, each care-giver, in expressing devotion to her relative, sounded almost saintly, using such phrases as “a privilege, not a burden” and “a special time.”

But midway, frustration and ambivalent feelings emerged.

Said Nicky Blackman: “I never seem to rest, but thank goodness, my husband is optimistic since he does not fully understand the prognosis. I really need to talk, because I pile up feelings inside. Ours has been such a special 34-year marriage. One day recently, my brother, who’s a minister, came over and I talked two hours straight. I don’t want to burden the rest of my family because they are suffering too.”

“Sometimes I feel guilty,” Thorpe said. “I have ambivalent feelings. My mother’s often cheerful and pleasant, and, because I am restricted with the care, I’m often not that way inside. I’ve thought, ‘God, help me not to end up like that,’ because up until four years ago mother was bright, active and agile. In some ways, I wish she had died earlier--with her full faculties and power.”

Unlike the other two, Bailey’s time at home is a little less concentrated. She spends three days a week as a volunteer working with brain-damaged children at Casa Colina Hospital in Pomona, which is also care-giving in a way but a respite nonetheless, she said. When she is away, her husband or outside help “baby-sit” her mother, who sleeps a great deal of the time.

“I was there around-the-clock for quite a stretch during the holidays and suffered from some stress, which increases my diabetic condition, but I’m not in trouble,” she said.

Bailey, who is in her 70s, admitted that “no doubt there are downhill changes, day-by-day,” in her mother but that it’s difficult to have a perspective. “You see,” she added, “she started living with us 30 years ago (when the mother was 66) and she was doing fine until she broke her hip at age 89. My husband was the one (and of course I agreed) who said she would never go to a convalescent home.”

Such spouse support was shared by all three, but in Thorpe’s case, her husband, a metallurgical engineer, is not there as much, spending 12 hours a day during the week in commuting and work time.

“I think the thing you miss,” Thorpe said, “is the freedom to do what you once did. I do have HomeCare help twice a week so I can get out and shop and go to exercise class, but even this time is carefully structured and planned.”

“My husband and I miss going out,” Bailey said. “He so wants to just go to a river bank and fish, with me sitting beside him.”

But these wistful feelings are momentary, apparently. The commitment was made, and they are holding to it. And they are facing “the end” with some foresight and courage. Said Bailey: “I think I will feel I have been blessed for having my mother with me as long as I did.” Said Blackman: “I have been determined to take care of him at home, and I will be grateful that I could.” And Thorpe repeated her desert analogy.

Because they are in a sense amateurs at what they are doing, the trio confess to having lacks that are somewhat ameliorated by a generous application of common sense.

Said Bailey: “I’ve never been a nurse, I know a little bit about hygiene and nutrition, but I think everyone in this situation could learn a lot more.”

Blackman said the greatest need is for a care-giver’s cookbook, filled with easy-to-prepare, simple recipes, without salt and additives. “Planning and preparing meals,” she said, “is the most difficult thing I have to do.”

What these women didn’t verbalize are some of the broader, more philosophical aspects of caregiving that authorities like Hartford have thought about a great deal.

“The thing that happens to caregivers,” she said, “is a growing insight about themselves. As they are doing what they are doing, they are learning about their own aging process. As they realize the importance of instilling hope and optimism in the care-taker, they are growing themselves and becoming stronger and wiser and feeling more needed.”

She emphasized the crucial importance of giving the care-taker “something significant to do,” having a say in what happens in his/her environment, making some decisions, feeling a part of the home.

“And I cannot stress enough the importance of bringing other generations into the environment, not only to vitalize the home but to give younger people a chance to share in the wisdom of the elderly,” she added.

There is, of course, another important matter--the need to provide respite time for the care-giver. Said Hartford: “A care-giver cannot completely lose her own selfhood in such a situation or she will have nothing more to give. Agencies such as HomeCare and others can provide help so that the care-giver can pursue some of his or her own interests--away from home, or even in it. This is crucial, not only to help care-givers replenish their own resources but, in the long run, to enrich the care-giving situation.”

In the case of HomeCare, since it opened as a licensed and certified agency in January, 1981, it has provided 80,000 hours of help to care-takers and care-givers in the Pomona Valley. According to Mary Sandoe, director of community relations, HomeCare is on call 24 hours a day, seven days a week to provide not only professional help, such as skilled nursing, but also para-professional services, such as shopping, housekeeping, hygiene care, meal preparation, transportation and even assistance in preparing insurance forms. Rates for housekeeping/companion services during the day, for example, are $7.35 per hour.

The Claremont-based agency is among 230 such licensed health services in the state that are serving the needs of the growing number of private homes that provide care for an aging relative. Joe Lydon, executive director of the California Assn. of Health Services at Home (CAHSAT), in a phone interview from Sacramento, observed that the bulk of nonprofit agencies (such as HomeCare) in the field came into being when Medicare offered the home health benefit component in 1965. The number of proprietary (profit-making) and hospital-based agencies grew with the passage five years ago of the Omnibus Reconciliation Act that encouraged this kind of service. One of the earliest agencies providing health services in the home, he said, was the Visiting Nurses Assn., which receives its support, in part, from United Way funds and which still provides much of home health services.

Lydon said that the growing trend of caring for the elderly in private homes has apparently not rankled the nursing home industry “because of the sheer numbers of elderly who need to be served.”

“More nursing homes are being built--and filled--and more private homes are caring for their elderly,” he added.

Callan is a Claremont-based writer/editor.