November 22, 2004
Eddie Hines is dying, his brain ravaged by a form of dementia called Lewy body. A small army helps Dorothy Hines care for her husband at home. For this family, that’s an enormous comfort.
“It’s a hard road, and it’s a very individualized journey," said Dorothy.
“There are little snippets of things people can do. It’s important to reach out and call upon people."
It’s not possible for everyone to keep their loved ones home once dementia takes its inevitable toll. Those who hold out the longest, however, usually do so because they have asked for help.
About three-fourths of people with Alzheimer’s or a related dementia — roughly 60,000 in Maricopa County alone — are cared for at home, with family members providing most of that care free of charge. The Hineses have long-term care insurance, which pays for the bulk of Eddie’s in-home care, and he recently qualified for hospice care.
But it’s difficult for most people with dementia — even advanced dementia — to receive hospice care unless they pay for it out of their own pockets. That’s a problem, dementia experts say, because this is precisely the care they need most.
Less than 10 percent of hospice care nationwide goes to people with dementia, mainly because Medicare qualifications for hospice are designed for cancer and other terminal illnesses, requiring declines like difficulty swallowing, weight loss, loss of mobility and repeated infections before a patient can qualify.
Hospice care is expensive, with Medicare reimbursement at about $130 a day, similar to a nursing home’s daily rate. Hospice nurses, attendants, social workers and pastors look after the physical comfort of the dying person and the emotional health of the family.
It is intended to provide comfort during the last six months of a person’s life, but late-stage dementia can drag on for as long as three years.
Dementia experts say it’s critical that people with advanced dementia get hospice or at least receive comfort care, and that hospice workers trained to care for dying people who can still speak and reason be trained to care for people with advanced dementia who cannot.
For example, people dying of cancer or other illnesses may not have much of an appetite in their last weeks or months. But people with advanced dementia can enjoy eating right up to the end, particularly soft, sweet foods.
Hospice nurse Jan Dougherty tells the story of a man who was able to feed his wife vanilla ice cream until just before her death, and it was a source of love and comfort for both of them.
“For those who do get hospice, the hospices had better know what to do with these people, and they don’t," said Dougherty, special projects manager with the local Alzheimer’s Association chapter. She trains Hospice of the Valley workers and nursing homes statewide in comfort care for advanced dementia.
“They struggle with this population. They can’t communicate with them," she said of hospice workers. “They don’t understand how to assess their behaviors as discomfort."
As it is, half of family caregivers are depressed and 80 percent say they’re stressed, according to an Alzheimer’s Association study. There are techniques to make life easier, including “therapeutic lying," where caregivers go along with their loved one’s delusion or mislead them so they will go to day care or to the doctor’s office. And there is day care and respite care, if your insurance covers it or you can afford it.
Still, family members often are forced to give up once the disease progresses to the point where the person is profoundly confused, incontinent, unable to eat or talk, and immobile. That’s especially true if the caregiver is older, such as a spouse, and lives alone with the person who has dementia.
Dana Plucas took care of her husband, Francis, during a rapid four-year decline from Pick’s disease, a frontal-temporal dementia. By 2002 she was still working full time and feared for his safety.
“Every day I would come home and think: What am I going to find?" she said. “He would fall out of bed. . . . I’d come home and find him on the floor. I couldn’t lift him up."
Francis, now 64, moved into Scottsdale Village Square’s wandering dementia unit in April 2002.
“It was the hardest thing I ever had to do," Dana said. “I couldn't stop crying the whole way home from work."
But Francis adapted right away, Dana said, and has gradually moved through three levels to the Vistas Palmas unit for advanced dementia. Recently, he qualified for hospice care, in part because of his weight loss.
“Education is huge for families and caregivers," said Diane Mockbee, activity director for Scottsdale Village Square and Vistas Palmas coordinator. “We just can’t leave people sitting in a chair at home to just exist."
HELP OUTSIDE THE HOME
At Sirrine Adult Day Care in downtown Mesa, nurse Rosemary Fuller and director Peter Sysyn see to it that people feel useful, whether it’s sorting nuts and bolts or filing “paperwork."
“The whole point of day care is to try to maintain people in their community," Sysyn said. “They’re still hopeful that they don’t have to place their loved one in a nursing home."
On a recent morning, Elsie Scifers, 87, was happily singing and dancing to the karaoke sounds of Big Bill Griffin, a Sun Lakes retiree who volunteers once a week at Sirrine and Red Mountain Day Care in east Mesa.
The day care allows Elsie’s daughter, Anita Wolf, to go to work and gives Elsie a host of benefits, from social interaction to the joy of accomplishing tasks and being included. Elsie agreed to go to Sirrine after her daughter said she would be volunteering there.
Activities at Sirrine are geared toward the 50 or so attendees, depending on their level of dementia. Elsie, with middle-stage Alzheimer’s, most enjoys dancing, while others can read, play board games, do arts and crafts, receive physical therapy or get their hair done.
“One day she came home and said, ‘I hope somebody’s made dinner, because I’ve worked all day,’ " Anita recalled. “They feel like they have a purpose. They’ve got to get up in the morning. Somebody’s expecting them."
Anita brought her mother from Illinois three years ago to live with her husband and two teenage daughters in their Fountain Hills home.
Through a support group, she learned about Sirrine and much more. She found ways to cope with her mother’s habit of pocketing keys and stuffing all her clothing into plastic bags. She learned how to keep her mother busy with household activities such as folding towels and sorting socks. Perhaps most importantly, Anita found an empathetic group of people to cry with and laugh with.
“If it wasn’t for that support group, I think I would’ve lost my mind," Anita said. “I didn’t know what to expect. I didn’t know what to do. . . . I felt like a caged animal. This was my life."
After more than five years of attentive caregiving, Jim Snouffer drove his wife to a Mesa nursing home Wednesday.
Although the decision came suddenly, he knew it was inevitable. Jim and his daughters had visited several East Valley nursing homes over the past year, as Evelyn’s dementia worsened and she began to show signs that she was losing her ability to walk. After returning from her day at Sirrine on Tuesday, Jim said, “her legs just went kapoop on her.”
“I had a terrible time with this,” he said. “But they can do so much more than I can.”
Family members typically learn to care for someone with dementia by doing, and just a fraction attend support groups or use day care or respite care.
Psychologist and dementia expert Gary Martin said family caregivers may know the person with dementia better than anyone else, but they need training just as professional caregivers do.
“They know all the subtle nuances that are so hard for the rest of us to know, and that are so important," said Martin, clinical director of Scottsdale Village Square and a support group leader for the Alzheimer’s Association’s Desert Southwest chapter.
“On the other hand, most of them have no training and no expertise for this," he said. “This is the only person they’ve ever done this with. And they often fall back on old skills and old habits that don’t work."
Martin said the local Alzheimer’s Association chapter, considered one of the best in the country, reaches only about 10 percent of families.
“Where do the rest of the people get their information? Many of them don’t. They’re just doing the best they can out there with no resources."
Hospice of the Valley has a grant to study grief and bereavement among dementia caregivers, who watch helplessly as their loved ones slip away over the course of a decade, rather than weeks or months.
“We’re talking about an eight- to 10-year progressive loss of a person," Dougherty said. “They are constantly grieving what they’ve lost and what they’ll lose next. . . . Our families suffer tremendously in this journey."
HARD ON THE FAMILY
Richard Pichette tried day care for his wife, Terrie. It lasted two weeks, until she hit somebody.
“She still had faculties enough to know she could get out of it by misbehaving," Richard said.
He first suspected a problem in 1995, when his wife was 53. He started getting calls that the bills had been sent without checks or the wrong payment had been made to the wrong company.
In November 1996, her boss sent her home in a taxi with orders not to return until she had been checked out by a doctor. Richard later learned that her co-workers at Intel had been covering for her. She wasn’t even able to fill out her timecard.
“I think she realized a lot more than the rest of us did," said Terrie’s daughter, Laura Contreras. “But she denied it. ‘There’s nothing wrong with me.' She would refuse to talk about it."
Richard and Laura kept working and tried respite care for Terrie, but she would lock out the respite workers, or leave the house and lock them inside. The husband and daughter tried to tag team so one of them would be with Terrie nearly all day.
In May 1997, Laura came over, the door was wide open and Terrie was gone. Twelve hours later, police found her walking along the Tempe Canal near Fiesta Mall.
Richard quit his job, cashed in their IRAs and dedicated himself to his wife's care.
He approaches his job as caregiver much as he approached his career as a plant manager, where he supervised hundreds of people on round-the-clock production lines. He keeps meticulous files and a precise routine. He expanded their master bedroom and made other renovations for Terrie’s comfort, including a path so she could do laps inside and outside their Mesa home.
In June, Terrie qualified for hospice care because of weight loss and other declines. That brings a nurse to the house every two weeks and a three-person team in three days a week to do bathing and skin care.
Terrie’s gait turned into a shuffle earlier this year, and in recent months her shuffle has developed a bad lean to the right. She now spends more time sitting than walking. Though Richard is grateful to have Terrie at home, watching her slowly die is heartbreaking.
“One of the benefits of the large master bedroom is we could put on the radio and she and I could dance," Richard said. “But we don’t dance anymore. It just doesn’t make sense."