‘You don’t want them to die, but sometimes you want them to die.’ : Help for Alzheimer’s Caregivers

Shirlee Weissman held her purse tightly in her lap, looking at the faces gathered around her.

“My mother usually doesn’t know who I am,” said Weissman, a 65-year-old widow living in North Hollywood. “When she looks into a mirror, she thinks she is a 17-year-old girl. I dress her and feed her, and it’s the same thing, day after day. It’s like a vise tightening, and sometimes you feel like you’ll go mad.

“You don’t want them to die,” she said, her voice dropping, “but sometimes you want them to die.”

For the group, which gathered recently at the Valley Senior Services and Resource Center in Reseda, the emotions were familiar. Weissman and her peers care for victims of Alzheimer’s disease--a progressive, irreversible brain disorder with no known cause or cure--and they have all experienced the despair that comes with the job.

Support Groups

The Reseda center is one of a growing number of facilities in the San Fernando Valley that offer weekly support groups for the caregivers of people with Alzheimer’s and other degenerative diseases. Although many are held in senior citizen centers or are hospital-affiliated, other groups meet in churches, temples and private homes. The most important need they fulfill is that of escape valve: sons and daughters, wives and husbands have an opportunity to spend some time without stress, some time to vocalize fears and desperation.

If statistics on the number of people afflicted with the disease are any indication, the need for such groups is great. Three million Americans suffer from Alzheimer’s disease, 25% of whom are older than 65, according to the Rockville, Md.-based American Health Assistance Foundation. Nearly 500,000 Californians suffer from Alzheimer’s disease, an estimated half of whom are cared for by relatives at home. The number of people suffering from the disease is expected to double in the next 50 years as the elderly population increases.

“There are only two ground rules,” said Judy Wolfe of the groups she runs at the Reseda center. “One is that they are confidential, and the other is that there are no ‘shoulds.’ If you come in and say, ‘Oh, well, that woman has it so much worse than I do, and I shouldn’t feel so bad,’ you deny your own feelings. Your problems are your problems,” she said. In addition to providing information about the nature of the disease and how families can prepare themselves, the groups also give caregivers a chance to share daily difficulties with people who understand them firsthand.

Topics at recent meetings have included the best way to bathe Alzheimer’s patients, many of whom feel especially vulnerable and frightened at that time; dealing with transportation problems; handling financial and legal matters, and making time to renew and recharge.

“It’s good to know that other people have the same problems and then find out how they are dealing with them,” said Beverly Bilford, whose husband, who suffers from Parkinson’s disease and dementia, attends the Reseda center’s adult day-care program twice a week. “Sometimes you just need a place where you don’t have to say everything is fine,” she said. (As part of the adult day-care program at the center, Bilford, like other caregivers, is required to attend the weekly support group meetings. Wolfe said attendance is mandatory because most people otherwise wouldn’t ask for help.)

Counselors point out that caregivers, many of them spouses or adult children of elderly parents, often are thrown onto an emotional roller coaster with little preparation for what lies ahead. Some of them are faced with caring for both elderly parents and young children.

Issues Vary

“They’re all dealing with the same problem, but they each have different issues,” said Kim Wilms, director of the Center for Alzheimer’s Resource and Evaluation at Grenada Hills Community Hospital. (The center will provide the locations and telephone numbers of various support groups throughout the Valley, most of which are free.) Wilms also is a member of the support group subcommittee of the Alzheimer’s Assn. of Los Angeles.

“If you’re caring for a parent and also have a family, it often causes friction in those relationships. You’re also taking care of someone who used to take care of you,” she said.

Taking care of a spouse, on the other hand, brings up different emotions. “It’s someone you raised children with and made decisions with. And a lot of times, there are the additional burdens of taking on the things the spouse did,” Wilms said. “Many women were brought up in a time when the husband did everything. They’ve never written a check.”

Unlike many treatable diseases, time is not an ally for people with Alzheimer’s. Patients often become depressed, irritable, restless and agitated, and their moods often become increasingly unpredictable. As their dementia and disorientation worsen, they become increasingly dependent on caregivers, leading many to report feeling trapped 24 hours a day.

Rage and Guilt

“I’ve had them scream with rage at the situation, and then feel terrible guilt for having that emotion,” Wolfe said. “I tell them that they have to take care of themselves and take time for themselves, or they’ll break under the pressure.”

(Last month a 60-year-old Highland Park woman fatally stabbed her 86-year-old mother, who suffered from advanced Alzheimer’s disease. A neighbor and close friend told police that the daughter had become enraged over her mother’s incontinence and the need to diaper her.)

Counselors say the lack of predictability is one of the most difficult aspects of the disease. Just as a spouse or child may begin to adjust to the ominous realities of a loved one’s illness, the person may appear to snap back to near normal. Then, just as hope is renewed, the patient’s condition declines again.

“On Saturday, he was beautiful. He talked to me, he knew me,” Bilford said to the group in Reseda. “He told me he sees people, but he knows they’re not really there. It’s as if a little piece of awareness will come to him for brief moments, and that’s what tears my heart out. I never know what man I will see.”

Letting Go

For many caregivers, letting go can be the most difficult task of all. It is then, many have said, that the support of a group is needed most.

“My wife’s Alzheimer’s started when she was only 58, but it went very rapidly,” said Max Lipshultz, an air-conditioning consultant in Van Nuys who placed his wife of 41 years in a full-time nursing facility 20 months ago. In slightly more than two years, he said, what started with his wife confusing the names of neighbors progressed to “where I was about to drive both of us into the garage and leave the motor running.”

It was then, he said, that he began attending support group meetings at the Bernardi Multipurpose Senior Center in Van Nuys. Despite his willingness and desire to care for her himself, he said, the group helped him see that he was no longer in a position to do so.

“It was terribly difficult. I went through just a terrible time,” Lipshultz said. “We were looking forward to enjoying our retirement together. We had our ups and downs,” he said, “but we really were madly in love with each other.”

Lipshultz said he still attends the support group regularly to help others who may be facing the same thing.

Personal Time

Although support groups help caregivers connect with others who are experiencing similar burdens, they also serve another function. In many cases, counselors say, caregivers must be encouraged to take time for themselves--if only for brief periods of time. Adult day-care centers, offered at numerous facilities throughout the Valley, are an attempt to meet that need.

“It’s ironic that as overwhelmed as many of them are, they also have difficulty letting go,” Wolfe said. “They may think that no one can take care of them the way they can, and they may get some satisfaction from that feeling.”

Lil Baker, whose husband has Parkinson’s disease and diabetes in addition to Alzheimer’s disease, sees it from a slightly different perspective. The soft-spoken, silver-haired woman said that caring for her husband at home is “terribly difficult” but that she wouldn’t have it any other way.

“It’s the right thing to do,” she said. “It makes me feel like a human being.”