COVER STORY : How Families Cope With Alzheimer’s

About a year ago, Eleanor Harrison awoke Jim Harrison in the middle of the night and demanded he take her home to her husband. Jim Harrison couldn’t believe his ears. “Honey,” he said. “You are home. And I’m your husband.”

“You’re not my husband!” Eleanor, 79, cried. “My husband is Jim Harrison!”

It took two Escondido police officers and Eleanor’s daughter more than an hour to persuade her that Jim was who he said he was. The 80-year-old retired florist from North Carolina had told the 911 operator, “I think my wife has lost her mind.”

He wasn’t far wrong. A specialist diagnosed Eleanor’s “spells” as probable Alzheimer’s disease.

“I didn’t even know what Alzheimer’s was,” Jim said as he drove toward the Escondido mobile home he purchased shortly after he got the grisly prognosis: that his wife of only 10 years was, in essence, going crazy from a disease that was devouring her brain.

“The doctor said there was no cure and the only thing he could do was give her a tablet to ease her anxiety,” Jim said.

Although he didn’t know it at the time, Jim’s prognosis was equally grim. As the primary caregiver to a dementia-impaired wife, he was doomed to “nearly lose my mind myself.”

No school, no book, no life experience, he said, could have prepared him for the pressures of dealing with a loved one suffering from Alzheimer’s disease.

Like so many others, he struggled with the decision on whether to care for his wife at home or place her in a nursing facility. Medical costs and social, legal, political, professional and family ramifications shook him to the core.

In a way, Jim was lucky. Right from the start he got hooked up with the San Diego Alzheimer’s Assn., and within a year solved many of his major domestic crises. A multitude of North County services specifically target Alzheimer’s victims and their beleaguered caregivers.

North County has five adult day care centers, 20 or more Alzheimer’s and dementia-related support groups, two county mental health crises intervention teams, seven skilled nursing facilities and a number of hot lines and information and referral services detailing everything from where to file a probate conservatorship to how to keep an Alzheimer’s victim from eating the cat food.

Alzheimer’s disease, the primary cause of dementia in adults, is the fourth major killer after cancer, heart disease and stroke, according to Ron Hendrix, executive director of the San Diego Alzheimer’s Assn. While any form of dementia can be devastating, he said, Alzheimer’s--with its roster of memory loss, hallucinations, incontinence and paranoia--is particularly chilling.

This lethal brain snatcher affects 4.4 million adults nationwide, 34,000 of them identified in San Diego County, Hendrix said. In 70% of cases, the person affected will be cared for at home by a family member or other loved one.

“No two Alzheimer cases are alike,” said Phyllis Lessin, assistant chief of the Alzheimer’s Disease Research Center at UC San Diego.

“San Diego is very rich in resources for Alzheimer’s families, probably the richest place in the country,” Lessin said. “There are many resources that are not being utilized.”

The San Diego Alzheimer’s Assn., with its specific mandate to aid the caregiver, may be the best place to start, she said. Many people, however, begin with their family doctor or specialist, or at the Alzheimer’s Disease Diagnostic and Treatment Center, a state-funded adjunct of Senior Only Care, a geriatric assessment clinic at UC San Diego.

Senior Only Care, together with the Alzheimer’s Assn., provides a network of resources, including support groups, libraries, workshops, seminars, professional staffs, respite services, caregiver training, legal consultation, family advocacy, counseling, adult day health care and social day care.

The Alzheimer’s Disease Research Center, which began probing Alzheimer’s in 1987, is another avenue. “We are trying to find out everything we can about what this disease is, the cause and how to treat it,” Lessin said.

The center conducts clinical drug studies aimed at finding a cure for Alzheimer’s and other dementia-related illnesses. Funded by the National Institute on Aging, it is one of the initial five of the now 28 nationally designated Alzheimer’s disease research centers in the United States.

Patients who participate in research trials of clinical drug studies pay no fees, Lessin said. And, although there are a limited number of drug study participants, anyone found to have Alzheimer’s can volunteer for the research program.

Both the research programs and the drug studies require heavy involvement by caregivers, Lessin said. An Alzheimer’s caregiver monitors the patient, administers drugs and notifies the center of any medical problems or changes in behavior.

Exciting advances aside, Lessin said, nothing yet holds a promise of reversing or even slowing the progression of the disease. Alzheimer’s destroys the brain--either quickly or by imprisoning its victims in various stages of dementia for up to 20 years.

Whether the culprit is Alzheimer’s or one of some 70 other forms of adult dementia, caregivers are left to cope as best they can.

Cost alone can stagger the most committed of them. Home caregivers often end up spending thousands of dollars out of pocket in addition to the wages and benefits lost if they give up jobs in order to care for their loved ones.

With Medicare, state and county cutbacks--including a recent 12% slash in In-Home Support Services--the financial squeeze on caregivers is likely to increase.

Starting with North County Seniors in Action and going as far afield as Lifeline, a nonprofit service known primarily for transporting the disabled, several North County agencies are equipped to advise caregivers on financial matters.

North County Seniors in Action, for example, a nonprofit organization that is funded primarily by the Area Agency on Aging, sprung out of the need for services for low-income seniors, said John Barnett, executive director.

“The objective is to make seniors as independent as possible,” Barnett said. That includes caregivers who may not want to drain their own resources in order to care for a disabled dependent, he said.

Licensed clinical social workers at North County hospitals and clinics also possess a network of financial resources at their fingertips.

Susan Shepherd of Senior Only Comprehensive Assessment and Retirement Evaluation (SOCARE), part of the Alzheimer’s Diagnostic and Treatment Center at UCSD, often counsels caregivers on the phone.

“I can be involved at any time,” Shepherd said, “from the very first phone call until long after they’ve completed the assessment program.” That could be as long as several years, she said.

Increased Social Security benefits may be the answer for some disabled seniors, Shepherd said, or a caregiver may want to explore In-Home Support Services.

“Someone coming into the home to help with bathing, dressing, or respite care can be the difference between keeping a loved one at home or confining them to a nursing facility,” she said.

For many caregivers, connecting with an adult day care center has been another crucial piece of the mix that allows them to manage home care.

“When I started taking Eleanor to the day care center five days a week, that was just a lifesaver,” Jim Harrison said as he settled into an easy chair in the living room of his mobile home.

Two of Eleanor’s childlike artworks are framed on the wall, and several arrangements of fresh flowers from Jim’s garden await his wife’s arrival from the Escondido Family Alzheimer’s Center each day.

At first, Jim thought the cost of day care--$40 a day--was beyond his budget. But because the Harrisons’ combined Social Security income is less than $1,500 a month, Eleanor qualified for a scholarship two days a week. Later, it became possible for her to attend five days a week.

Not only are Eleanor’s social day care needs met, Jim said, but the center’s networking, support group, psychiatric facilitators, caregiver training, counseling and Morning Out Club benefit him as well.

The Escondido center, one of three owned and operated by Joy and Dr. George G. Glenner and affiliated with UCSD, is in a converted house shaded by fruit trees.

Lively organized activity, at least one staff member to every participant and a lot of training go into setting the tone of the center, according to Bonnie Schisler, its manager.

Schisler, a graduate of the George C. Glenner School of Dementia Care and on her way to a master’s in social work, says the center’s success stems from the Glenners’ philosophy that “the family is as much a victim of Alzheimer’s as the patient.”

“That’s the reason we’re called the Alzheimer’s Family Center,” Joy Glenner said. Her husband is a pioneering molecular pathologist who last month isolated an enzyme that may possess the key to curing Alzheimer’s.

“When we started in 1982, no one had done a specific medical social model for Alzheimer’s and related dementia,” said Glenner, whose mother suffered from dementia.

“The reason we enrolled the family caregiver in the program as well as the patient is because we wanted to build a program based on the philosophy that if you can hold the family together through long-term care, you provide a better quality of life for the patient that literally means survivalship.”

For Jim Harrison--in a position he never dreamed possible two years ago--the Escondido center’s support group and Morning Out hike in Felicita Park every Wednesday help keep him sane.

Schisler, who leads the walks, says the regular exercise helps alleviate depression and provides socialization for caregivers. “We discuss therapeutic issues . . . guilt, denial, anger, grief . . .”

Caregivers dealing realistically with the grief of their circumstances unload dangerous stress, Schisler said.

According to an ongoing caregiver stress study at UCSD, caregiving affects the caregiver not only emotionally and behaviorally, but immunologically.

The study, funded by the National Institute of Mental Health, seeks to determine the relationship between caregiving and disease, according to study director Dr. Richard Patterson, an associate professor of psychiatric studies at UCSD.

Patterson and others have spent three years testing 120 spousal caregivers--half of them from North County--whose average age is 71 and who care for their mates at home.

“The good news is that caregivers aren’t as bad off as we thought,” Patterson said. “That’s the up side.”

The down side is that caregivers tend to exhibit more depression, increased blood pressure and biological indicators of physical illness, including changes in natural killer cell activity, he said. (Killer cells are immune cells responsible for fighting off tumors and viruses.)

“I can say that those who tend to do worse in our study are the ones who get the least amount of rest,” Patterson said. “The main thing is, you’re not doing yourself or your patient any good if you don’t take care of yourself.”

Anxiety over his feelings of isolation, layered with worry about his financial future and his competence as a caregiver, led Jim Harrison at one point to consider putting Eleanor in a nursing home.

But the combination of in-home help, day care center services and renewed patience have made it possible for him to continue caring for his wife.

Described as high-functioning by the day care center staff, Eleanor exhibits a low tolerance for pain and intense paranoia regarding the possibility of other women in her husband’s life.

Jim copes by taking his cues from the Escondido Family Alzheimer’s Center, his minister and from the Alzheimer’s Assn.

“I can’t afford to be rough with Eleanor,” Jim said in his soft North Carolina drawl, “so I try to be gentle all the time. I’m more affectionate than I used to be. She’s always holding out her arms to me and asking for a hug. When she gets up and gets dressed in the middle of the night, I say, ‘Honey, put your nightgown on and get back in bed, because it’s 3 o’clock in the morning.’ ”

At first, Jim lost his temper a lot. “I had to learn to handle her with kid gloves and tender loving care and to realize this horrible thing is not her fault.”

If he could pass on anything to caregivers in similar situations, it would be “to take stock of yourself, and remember--it’s not their fault.”

After a year and a half of utter frustration, caregiver Esma Lucy took a major step forward: she enrolled her mother in an adult day-care center. Page 5.

Bill and Diana Price use humor and ingenuity to care for two family members with Alzheimer’s disease. Page 6

Denise Parker, an adult day-care center aide, has something that can’t be taught: spirit, respect and compassion for her charges. Page 8

Where to call for help with caregiving, coping. Page 7