Care-Giver ‘Burnout’ Hits Many, Experts Say : Elderly: Some either don’t know where to turn for help or won’t admit they need it, according to social workers.

The arrest last week of an elderly Santa Ana woman accused of dousing her terminally ill husband with rubbing alcohol and setting him on fire was an extreme result of an all-too common problem, Orange County experts in geriatric care say.

While the plight of June Carter, now charged with attempted murder, was unusual in its severity, “care-giver burnout isn’t,” said Mary Watson, an administrator at UC Irvine School of Medicine’s program in geriatric medicine. “People do bizarre things when they’re care-givers and burned out. And you don’t know what can happen.”

Carter, in her late 60s, is now in jail, charged with elder abuse and attempted murder. Paul Carter, 62, who has cancer and is confined to a wheelchair, remains hospitalized with second- and third-degree burns he suffered over his upper body in their Santa Ana apartment.

Police said that the attack was triggered when Paul Carter ate his wife’s chocolate Easter rabbit but that her anger may have come from the stress of coping with his illness.

Social workers, doctors and other health providers say anyone tending a seriously ill, elderly person can be driven to desperation. Their reactions, some experts on senior citizens say, can range from depression to complete physical exhaustion. In some instances, the stress has led to murder of a spouse and then suicide.

Peggy Weatherspoon, executive director of the county’s Area Agency on Aging, recalls the case of a wealthy Orange County couple. The wife developed Alzheimer’s disease, and as her mental and physical abilities failed, the husband became her round-the-clock caretaker.

As he focused all his attention on her, his health began to fail, too. He was formerly known as a “distinguished, dapper dresser,” she said, but as he became fully involved in his wife’s care his face often went unshaved. Finally “he was hospitalized with pneumonia and died, and she ended up in a nursing home,” outliving her husband by two years, Weatherspoon said.

Thousands of Orange County residents and the ailing spouses or parents they tend may be living this private hell, county officials and other experts on the elderly say.

From 4% to 15% of the county’s 306,417 senior citizens are believed to be financially exploited, physically abused or neglected, say county officials who deal with the elderly.

This abuse--by children, spouses and other relatives as well as paid caretakers--is underreported, said Allen Cox, senior social services supervisor with Adult Protective Services. But of 1,780 reports of suspected elderly abuse or neglect last year, 5% involved the spouse as the abuser and another 15% involved other caretakers.

Of the county’s elderly and infirm, about 25,000 are “shut-ins,” cared for at home by someone else, Weatherspoon said.

About 40,000 county residents are believed to be suffering from Alzheimer’s disease, and many of those are cared for at home, often by the spouse, Weatherspoon said. Other senior citizens are at home, coping with a stroke or cancer or recovering from hospitalization, she said.

And though there are both public and private services available, many caretakers either don’t know where to turn for help or, as a matter of pride, don’t want to admit that they need it, social workers and experts on senior citizens say.

“We’ve dealt with people in tears who’ve called us over weeks but may or may not follow through . . . (saying) I promised my father I would never place him,” said Pam McGovern, executive director of the Orange County Council on Aging, which offers free assistance to those considering nursing home placement for a relative.

Many senior citizens “don’t know where to turn,” McGovern said. “They just get into the routine of providing daily care. They think of nursing homes as very expensive and something they can’t afford. Most are not aware Medicare will cover those costs.”

UCI’s Watson said it’s a matter of luck for anyone in need of help to recognize that and then to find it.

“Do you know to call triple A--the Area Agency on Aging?” she said. “Do you know to open up the telephone book and look under seniors in your city? Do you even consider yourself a senior?”

Donna Farris, oncology social worker at Saddleback Memorial Medical Center, said social workers there “see a lot of this” burnout. Further, the caretakers “may not realize” the pressure they are under, she said.

At a recent workshop on the stresses of coping with someone ill at home, Farris said, she asked for a show of hands and only three went up. But at the end of her talk, many people came up to her saying, “I’ve done that.”

Some spouses concur that the grueling demands of tending an ill person at home can make them angry or physically ill.

A Tustin senior citizen who tended her aged husband at home as he became debilitated by Alzheimer’s disease said of June Carter, “I could put myself in her shoes.” Although she loved her husband, “I was awfully tempted at times just to strike out” at him, she said.

In the six years when, mostly alone, she bathed him, fed him and sometimes followed her disoriented husband out of the house, “I’ve been desperate enough that I have screamed at him . . . ‘Please, no more!’ ” she said.

Dr. Jim McQuade, director of psychological oncology at UCI Medical Center’s clinical cancer center, said: “One of the worst things for an elderly person (caring for an ailing spouse) is the isolation. In cases like June Carter’s, “there’s a lot of work. There’s often a lot of grief because single caretakers are usually (taking care of) lovers, spouses.”

But Farris and others concerned about the elderly say Orange County has resources to prevent caretakers from becoming overloaded so that a similar tragedy will not occur.

For starters, she said, they need to ask for help.

That aid can come from social workers, doctors or a church, as well a variety of agencies.

A problem for many care-givers, however, is that “by the time someone has screwed up the courage to call the Alzheimer’s hot line about adult day care” for a relative with Alzheimer’s, that person’s condition may have deteriorated and he or she must be placed in a nursing home, said Linda Scheck, associate director of the Alzheimer’s Assn. of Orange County.

And there is still too much guilt by care-givers who are drained by tending a relative but who believe that it is their duty, Scheck said.

“One care-giver told me today that he ‘quit’ ” caring for his wife, who was recently placed in a nursing home, she said. Schect said the man was unable to say that “he turned his wife over to professionals so he could share the good times,” and perhaps enhance her life by visiting her in a setting of professional care.

“One care-giver told me today that he ‘quit’ ” caring for his wife, who was recently placed in a nursing home, she said. Scheck said the man was unable to say he turned his wife over to professionals. It’s unfortunate, Scheck said, that he felt so guilty over a wise decision.

Where to Get Help

Senior Information and Referrals, (714) 567-7500. Help line operated weekdays from 7:30 a.m to 5:30 p.m. by the Orange County Area Agency on Aging. Offers countywide information on senior centers, nutrition programs, transportation, in-home care and adult day care.

Alzheimer’s Assn. of Orange County Helpline, (714) 283-1111. Offers someone to talk to, 33 support groups in county, referrals for daytime and residential facilities for adults, plus in-home “respite care” at no cost, or at families’ ability to pay. Will also make referrals for families coping with stroke, Parkinson’s disease or other memory disorders.

In-Home Supportive Services, (714) 568-4726. Run by the Orange County Social Services Agency, it provides non-medical assistance to aged, blind or disabled residents at home. Services include household chores, bathing, shopping. Eligible to those who meet financial criteria.

Ombudsman Program, (714) 972-2676. Run by Orange County Council on Aging, this agency offers free counseling to those considering a nursing home. Helps caretaker decide if adult day care or out-of-home placement is best. Also handles complaints against nursing homes.

Homemaker Program, (714) 751-0441. Run by the American Cancer Society. Provides free attendant care eight hours a day, Monday through Friday, for a maximum of six weeks to any cancer patient living in Orange County who can demonstrate a financial and physical need. Attendant will bathe patient and change bed, but will not give medication.

Community Hospice Care of Orange County, (714) 637-7075. A Medicare-approved hospice. Offers palliative care to the terminally ill--those with six months or less to live. With 24-hour coverage, it provides home nursing, counseling by social workers, a chaplain for patient and family, regardless of income.

Visiting Nurse Assn. of Orange County, (714) 771-1209. Recently approved by Medicare to offer palliative care to those with six months or less to live. Provides 24-hour, skilled nursing at home, personal care, social work, pain management and bereavement support for family, regardless of ability to pay.

Adult Abuse Registry, (714) 285-1948. Run by the Orange County Social Services Agency, this 24-hour phone line takes reports of suspected abuse, neglect and financial exploitation of the elderly. Social service staff investigates.