The emotional landmines of family caregiving


Most families squabble. After a short cooling-off period, relatives tend to resolve spats and go on with their individual lives. But there are situations that make it difficult to restore harmony. For example, when an elderly loved one breaks a hip, suffers from dementia, a stroke or other disabling illness, spouses and adult children can become unglued. The frailty and dependence of a loved one often ignites emotional landmines, stirs up old family issues and uncovers personality traits best left buried.

Sibling Rivalry

A common situation goes like this: Sis worries that increasing forgetfulness threatens her mother’s safety. Her brother, on the other hand, argues that a few Post-It note reminders placed around mom’s home will remedy any “senior moments” she may have.

Sis replies, “You haven’t seen the burnt pots and pans left unattended on the stove.”

He comes back with “You are overreacting.”

Both want the best for their mother, but their competitiveness gets in the way of their ability to execute a plan. Each one is trying to prove that they are the smartest, most reasonable and the supreme problem-solver. Sibling rivalry never dies.

The siblings’ time would be better spent asking their mother what she prefers. Does mom want to remain in her home in the face of growing difficulties? Most seniors do. An assessment by a professional geriatric care manager (who is not a relative) would lay the groundwork for a plan to keep mom safe in her own home or, if that’s not wise, help the family find a more suitable living arrangement. For an explanation of what a geriatric care manager does and the location of one near you, visit www.caremanager.org.

The Golden-Haired Child

A painful situation for the primary caregiver occurs when another close relative does little or nothing to help, but they are adored and praised by the senior anyway. This frequently triggers resentment in the mentally and physically exhausted primary caregiver.

Keeping uninvolved relatives in the loop about medical conditions, treatments and finances increases the likelihood of their involvement. At the very least, it prevents later complaints that “nobody told me” or “I’d have never agreed to that had I’d known.”

It’s infuriating when others don’t do their share, but ultimately you can’t force people to do anything they don’t want to do. In the long run, you are better off not spending time stewing, a practice that results in more anger, bitterness and family feuds.

Before throwing in the towel, get together a family conference where the topic for discussion is “sharing the caring.” Generally, people are more willing to participate when they can contribute in a way that’s comfortable for them. Not everyone is willing or able to do hands-on care. Some relatives might have the know-how to help with figuring out and managing health benefits or home repairs or be willing to accompany the elder to doctor appointments.

The Scrooge

The Scrooge is the family member who skimps on or neglects care. I recall a daughter who petitioned the court and was granted the conservatorship of her severely demented mother. The siblings welcomed the newfound kindness of their previously self-centered sister. Then the daughter moved their mother to an unlicensed, below-standard “cheap” facility far away from other family members. Soon, she began to mishandle her mother’s finances.

Most Scrooges simply want to preserve their inheritance or “get it early.”

If the older woman (when she was still well) had executed a living will or designated an ethical person to be her durable power of attorney for health care and for financial decisions, the Scrooge may never have been able to take over her mother’s care for her own gain.

These documents can be downloaded and are explained online at www.caringinfo.org.

The Long-Distance Denier

Some relatives are well-meaning, but distance is an obstacle. In this group there are also a large number of deniers who insist that nothing is wrong with mom or pop. Almost as bad are the bossy long-distance relatives who issue inappropriate and unsolicited “advice.”

Two solutions come to mind. First, discover what the distant person is willing to do from their own home. For example, research medications, health conditions, locate resources online, or provide emotional support via telephone or even financial support. Second, invite a denier to eldersit so the caregiver can take a break. A few days of duty may open their eyes to the “true picture.”

The Sandwiched Caregiver

Some caregivers are squeezed between caring for an elderly parent and parenting a teenager. Every hour spent on eldercare represents an hour unavailable for children. The bane of the sandwiched caregiver is guilt. No matter how much they have done, they always feel they could have done more. Even worse is the guilt experienced when their frustration and exhaustion result in angry words directed at their spouse, teenager or even the older family member.

One solution is to include the entire family in eldercare. For instance, children usually love assisting with grandpa’s exercise. They can count the repetitions and cheer grandpa on. Teenage girls may get a kick out of doing grandma’s nails. Such activities lighten the caregiving load and help young people develop compassion.

Joining a support group is an ideal way to cope. To find a support group near you, start with the Alzheimer’s Association at (800) 272-3900 or www.alz.org.

The Overburdened

The overburdened are easily identified because the people they are caring for look better than they do. Overburdened caregivers are more inclined to have depressive illness, flare-ups of their own medical conditions and a higher mortality rate than those who are not caregivers.

The good news is that caregivers who choose their battles wisely, recognize that eldercare does not have to be perfect, and tend to their own health needs are able to provide better and longer care of their loved ones. While eldercare is often a thankless job, many caregivers report tremendous satisfaction when they reflect on the care they provided during the last years or months of their loved one’s life.

The Super Caregiver

The classic “Super Caregiver” is an adult child or spouse who refuses offers of help, saying, “No one can do it better than I can.”

In Sickness and Health


While bathing and dressing her disabled husband, Harlan, Mary Ann Nation often remembers her wedding day 32 years ago. "When I was 18 and standing before that judge … I didn’t say to myself, ‘Oh … this is for life, in sickness and health, but it is," she said. "It’s sickness and health, his and mine. You don’t rewrite that."

Nation quit her job to care for Harlan, who lost his ability to speak and move after contracting a rare brain virus three years ago. The work is "lonely and it’s hard," she said. "What wears you down is there’s only one way out of it, for Harlan to die. But that’s not my goal…. That’s not what I want."

It’s a predicament shared by all the caregivers in the wrenching, two-hour documentary, "And Thou Shalt Honor: Caring for Our Aging Parents, Spouses and Friends," to air on KCET Oct. 9. Produced and directed by Harry Wiland and Dale Bell, the film explores the rewards and dilemmas faced by the estimated 30 million Americans who care for disabled loved ones.

"It’s part of a growing healthcare crisis," Bell said during a Journal interview. "Technology allows us to live longer, but it costs more to keep us alive."

"The aging of the Baby Boomers will cause the over-65 population to double in 20 years," Wiland added. "The impact will be costlier than terrorist attacks on this country."

The costs are already evident to 83-year-old Jerry Cohen, a Jewish retiree interviewed in the film. When Cohen’s wife, Harriet, recently suffered a stroke, he was appalled that her rehabilitation hospital employed only one caretaker per 13 patients. He brought her home but found that the expenses soon caused his life savings to dwindle from $110,000 to $40,000.

A distraught Cohen turned to Janet Morris of Bet Tzedek Legal Services of Los Angeles, who said Medicaid would pick up the tab if he placed Harriet in a residential facility. "Being a caregiver at home means you’re not eligible for anything," she warned. "Unfortunately, the way the system works there’s an incentive toward institutionalization. The people who are caregivers at home [are] forgotten."

Never mind that 80 percent of caregiving is done at home, where costs are cheapest; or that the nursing home is "a really fouled up … antiquated factory system," Dr. Bill Thomas says in the film.

Cohen, for his part, is perplexed: "It just doesn’t make any sense," he said.

Wiland and Bell decided to make the documentary because the rules didn’t make sense to them, either. Wiland, a Jew from Brooklyn, and Bell, a non-Jew from Westchester County, N.Y., have personal experience: both served as long-distance caregivers for their late parents.

For four years in the 1990s, Wiland, 58, flew to Miami every month to supervise his father, an Alzheimer’s patient.

Bell, 64, scrambled to raise four children while constantly replacing home health care workers for his alcoholic mother in Houston. "I don’t think many of them lasted more than a month," he said. "Eventually the booze and cigarettes got to my mother." The once glamorous model suffered strokes, developed emphysema and, by the mid-1990s, had to be placed in a nursing home. "I had to pack up all her belongings and send them to family members," Bell said, ruefully. "My mother cried that day."

After reading a 1999 New York Times story on geriatric care management, the filmmakers decided to make a documentary to help others weather similar crises. They envisioned a movie accompanied by an interactive Web site and a book to offer real-world solutions to caregiving problems (see sidebar). They raised a $2.4 million budget, a significant percentage from Jewish philanthropies such as the Jewish Healthcare Foundation. A 35-member advisory board helped them find diverse interviewees from Los Angeles to Pittsburgh.

One of them, Mattie Boykin, raised nine children by cleaning houses and cooking in government commissaries in Atlanta. When a stroke left her mentally and physically impaired in 1996, three of her children began alternating four-months shifts to care for her. Boykin’s daughter, Gladys, a single mother who manages a Kentucky Fried Chicken, can’t afford home care; so when Boykin stays with her, the great-grandmother spends all day, every day, sitting by herself in the fast food restaurant. In one of the most heartbreaking moments in the movie, the camera zooms out to reveal Boykin alone at a table, ignored by the lunch crowd.

In Tucson, the camera’s unflinching eye follows George Mairs as he lifts his wife, Nancy, out of bed, places her in her wheelchair, gives her a shower, combs her hair and applies body cream. "If I want to make things easy … for everyone, I should just die. But having George participate in my care calls me into life," said Nancy, who has multiple sclerosis. "It said, ‘Despite your limitations, you belong here with us, and we’re willing to participate in the labor it takes."

Bell, for his part, was moved to tears behind the camera. "It was a sharing of the body and of the soul," he said. "I’ve never achieved this kind of intimacy in another film project."

Indications that one may need to intervene in a loved one’s care, from "And Thou Shalt Honor, The Caregiver’s Companion" (Rodale Press, $24.95) a how-to book edited by Pulitzer Prize nominee Beth Witrogen McLeod:

  • appreciable weight loss or gain
  • sudden paranoia, combativeness,
  • aggression or hallucinations
  • disturbing changes in attitude and self-esteem
  • a noticeable decline in hygiene and grooming
  • excuses for skipping routine tasks like
  • going to the doctor, the barber or the grocery store
  • lack of interest in friends, hobbies and activities
  • social isolation
  • unpaid bills or notices about utilities
  • being shut off
  • unsafe behaviors such as leaving
  • food burning on the stove
  • frequent falls
  • frequent memory lapses
  • getting lost on familiar, well-traveled routes

To order the book or the videotape of the documentary, "And Thou Shalt Honor: Caring for Our Aging Parents, Spouses and Friends," call Wiland-Bell Productions at (310) 202-7730 or go to the project’s interactive Web site at www.thoushalthonor.org. While visiting the site, you can also type in your zip code to access information about caregiving resources in your area. — NP

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