ONE FAMILY'S PAINFUL CHOICE
His wife has Alzheimer's, and Earnest Prather is faced with putting her in a long-term care facility
By Jim DeBrosse and David Gulliver
Dayton Daily News (OH) - Tuesday, December 7, 1999
(C) 1999 Dayton Daily News
HARRISON TWP. - For nearly six years, Earnest Prather didn't spend a single night away from his wife Beverly. How could he when she needed his help to eat, bathe and dress, to calm her through the long, restless nights?
Then, last July, at the urging of his children and his support group, he decided to take a 10-day vacation on his own. He placed Beverly in respite care at Sunrise Assisted Living of Englewood and drove 700 miles to Lawrence, Kan., to revisit the scene of happier times during the early years of their marriage.
He lasted five days and part of one night. Finding it impossible to sleep, he packed his car in the wee morning hours, paid the motel bill and drove home .
"I kept thinking about what she was thinking about - about my not being there, waking up in different surroundings," the 69-year-old retired engineer said. "It's just those thoughts, as much as you try to keep them out of your mind, while you're driving."
It wasn't until several months ago, when he dropped his wife off one morning for adult day care and spied her across the lobby staring blankly into space, that Prather realized he was about to lose her to a disease from which there is no return. After 48 years of marriage, of raising three children, of sharing dreams, laughs, heartaches, travels and thousands upon thousands of days and nights together, Beverly was slipping inexorably into that twilight between life and death known as Alzheimer's.
Before her condition robbed her of much of her speech, `we used to talk about what would happen down the road a ways. We also used to talk about `why.' With everything being so great in our lives, why? Why did this have to happen?' Prather put his fists to his mouth and stifled a sob. `If I could just read what's in her mind now . . .'
At age 66, Beverly Prather - mother, grandmother, former real estate agent and avid country-western line dancer - is nearing the last stages of Alzheimer's disease, a final turning point when patients lose the ability to recognize their loved ones, to control their bodily functions, even to swallow their own food.
Now her family, especially her husband Earnest, is grappling with what the next move will be for her long-term care. Home health aides? Assisted living? A nursing home ? Expanded day care?
As experts strongly advise, the Prathers have started the search process early on, before it becomes a rushed decision under pressure of a crisis. In August, the Prathers and their three children gathered several times at the small ranch home Prather shares with his wife to discuss the future.
Earnest and Beverly Prather are part of a growing trend of "boomerang parents" who have moved closer to their Baby Boomer children as their health declines.
Nearly two years ago, the Prathers sold their retirement home in Colorado and relocated to Harrison Twp., on a quiet cul-de-sac off Philadelphia Drive close enough to hear the hushed ripple of the Stillwater River. The couple wanted to be nearer their daughter Linda Hickman, 46, who lives in Vandalia. The Prathers' two younger sons, James and Michael, live in Kansas and Idaho and flew in for the family meetings in August.
Knowing that Alzheimer's disease can sometimes be hereditary, Hickman and her husband Philip have put aside savings for the family's future security. At the same time, Hickman said, she's confident that researchers are just a few years away from developing drugs that can stop the progress of Alzheimer's and, in a decade, they will have a cure for it. "What I have that my mother doesn't have is time," she said.
If they could afford it, the Prathers' first choice for Beverly would be assisted living care either at the new MapleRidge Marriott in Clayton or at Sunrise Assisted Living of Englewood, where she goes three times a week for a day-care program that helps keep her alert, and gives Earnest a much-needed break. "If she stayed home , she'd probably sit and watch TV all day," Hickman said. "This way she sees her friends, and they have games and activities for them."
Moving Beverly into Sunrise full-time would be the easiest transition, the family says. They like the home -like setting at Sunrise, with its carpeting and drapes and plush Victorian decor, and its sunny, private rooms equipped with kitchenette and bath. They also like the way the staff involves residents in activities and social gatherings.
Like many assisted living facilities, Sunrise is determined to eradicate any resemblance to a nursing home . Its residential wings are dubbed "neighborhoods" rather than units. Each neighborhood has rooms for at least 12 residents and its own kitchenette, laundry, courtyard and living room with fireplace and library. Residents can dine in a restaurant-style setting with servers and linen tablecloths.
"It's just like moving to another home ," Earnest Prather said.
The nursing homes the Prathers have looked at are neat and clean and have some homey touches, "but it's still like you're in a hospital. People are either in their rooms or they're sitting out in a hallway," Prather said. "You don't have all those little living rooms and all the activities. They pretty much end up staying in their rooms and they don't get involved."
But, like most Ohioans, finances have left the Prathers no choice but to place Beverly in a nursing home - and not because it's cheaper. Beverly's care in a nursing home will cost twice as much: $4,500 to $5,000 a month, with no guarantee of a private room, compared to $2,200 to $2,300 per month for a private room at the MapleRidge Marriott.
The deciding factor for the Prathers is this: The state's Medicaid program will pay for Beverly's nursing home care, but not for assisted living.
As a retired safety officer, Prather worked 15 years for the Occupational Safety and Health Administration. His modest government pension and Beverly's small Social Security benefit are not enough to swing the cost of an assisted living facility.
The state's PASSPORT program might pay for aides to care for Beverly at home , but Earnest has ruled out such help. Worries about possible theft and abuse "in this day and age are probably No. 1," he said. "And it would bother me just seeing someone else handling her, especially if they were short-tempered. I'd rather do it myself, as long as she still recognizes me."
Although state and federal laws require more skilled staff and more supervision for residents at a nursing home than for those at an assisted living facility, the Prathers are convinced that Beverly would be just as secure - and much happier - with her surroundings at either Sunrise or the MapleRidge Marriott.
Nursing homes "are just a place you go to die rather than a place you go to live," Earnest Prather said. "Feeling more comfortable (in assisted living) would be one of the best things for her."
The Prathers' decision has taken on added urgency because Beverly is among the 10 percent of Alzheimer's victims who also suffer seizures. She has begun to blank out and fall with increasing frequency. Usually, Prather says, she will grab onto his arm or slump against a wall to break her fall.
"I've seen her go back against the bedroom wall, eyes open, and slide down. She'll keep saying, `I'm sorry, I'm sorry,' all the way down."
Prather has made small but crucial adjustments to their ranch home to accommodate his wife's condition, adding an electronic alarm to the front door in case she tries to slip out at night, a stool to the shower for her to sit on while he bathes her and an elevated seat with handgrips to the toilet. "She wouldn't sit down on the toilet before - people with Alzheimer's have this fear they're falling down into a hole," he said.
Hickman bought her parents a customized trailer with a porta-potty inside, so Beverly can travel with Earnest without having to use public facilities. "If she goes into a public restroom, I have no way of knowing in what condition, or when, she will come out," Earnest Prather said.
Beverly's most recent fall occurred in late August while she and Prather were shopping at an Englewood supermarket. Prather grabbed for her hand and arm as she dropped, but not soon enough. `I didn't realize she'd hurt herself, but then later that day I noticed her hobbling. I pulled up her pants leg and her left knee was bruised.'
Although her doctor says it's time to put Beverly in a wheelchair, Prather fears that he won't be able to push it. Prather's shoulder was replaced in 1996, after years of arthritis triggered by a horse-riding accident as a teen. His doctors told him "to treat my arm like an artificial limb - I can eat with it, dress with it and hold my wife with it, but that's all," he said.
Prather wants to hold on to his wife as long as he can, "but I don't want her falling,' he said. `If she broke a bone, she would go into a rapid deterioration and that would be the end.'
Caring for his wife at home has become an exhausting, full-time responsibility for Prather, except for the six hours, three times a week, that he leaves her at Sunrise Assisted Living of Englewood. His daughter, Linda, who has a husband and young daughter of her own, helps Prather with housecleaning and shopping and, every other Tuesday night, watches her mother while her father attends a support group for caregivers of Alzheimer's patients.
Prather's children worry that he is jeopardizing his own health to keep his wife near, and they have offered to pay for two more days per week at Sunrise. But Prather has declined, saying that his wife's care is his responsibility and that he doesn't want to create any friction with his in-laws.
"I'm trying to help Dad as much as I can, but with Alzheimer's, it will get to the point where it's just too difficult for him," Linda Hickman said.
His caregiving duties exact a mental toll on her father, she said. "It's kind of normal, I think, for people in his position, but he takes anti-depression medication - a minimal dose - just enough to help him along."
Prather says he might again try to leave home for a while. Counselors recommend that full-time family caregivers take a break of 7 to 10 days, at least every three months, to avoid burnout and to ease the transition to a new life once the loved one is gone.
"I think it will be easier the next time (to take a break), but I haven't set up a date yet," Prather said. "Maybe when she no longer recognizes me . . ."
After nearly a half-century together, he says, it's hard to know where her life ends and his life begins - now, more so than ever.
In the last several months, Beverly has become increasingly confused and dependent. Prather must help feed her, bathe her, dress her and apply her makeup and nail polish - things he feels are vital to maintaining her dignity and self-esteem.
At night, he soothes and pats her when she wakes and becomes agitated. He watches that she doesn't wander in the dark or leave the house when she needs to use the bathroom. It takes him about an hour to go back to sleep, he said, "but if it's after 4 o'clock, forget it."
Within the last few months, Beverly has begun to use the wrong eating utensils - a fork to scoop her yogurt, a chicken bone to dab her mashed potatoes and gravy - or her fingers alone, if she's hungry enough. Earnest must start brushing her teeth before she remembers how to do it. And instead of rinsing after brushing, she swallows the water.
`The confusion part is getting worse. Every three or four days now, or a week, I'll notice something new,' Prather said. `She won't put her arms through shirt holes anymore. She used to help me with that.'
Prather said he realized five or six months ago `that when I talk to her all the time, she doesn't understand anything. But I'd like to think . . .'
He stopped himself short, taking a deep breath. `It's like a kid, I guess, who doesn't want to give up the idea of Santa Claus - it's kind of hard to give up that idea that she doesn't understand.'
What keeps Prather hanging on, he says, is that his wife still recognizes him - at times. Two months ago, when her doctor had her wear a heart monitor for a day, Beverly became so agitated at day-care that she began to ask for him by name. `That's the first time they had ever heard her say, `Where's Earnest?' It used to be, `Where's my man?' `
His wife used to reach for his kisses. `A lot of times she doesn't want to now,' he said.
The Prathers have been given a reprieve of sorts in the last two months. Beverly's doctor increased her dosage of Depakote, an anti-seizure medication, and she blanks out less frequently. But Prather says it's simply buying time - this is the fourth increase in Beverly's dosage over the last 10 months. Each time, its effectiveness has worn off in a few months.
In their search for the right nursing home , the Prathers have done some things by the consumer book, others by gut feeling and intuition. They have visited several nursing homes within easy driving distance of both Harrison Twp. and Vandalia, so that Prather and his daughter will be able to visit often.
They've taken tours of each, guided by a marketing director, but they have yet to drop in at odd hours or talk to staff members or patients and their families out of earshot of administrators, as experts recommend. Nor have they looked at the homes ' most recent inspection reports.
Five years ago, few, if any, nursing homes in the Dayton area had full-time marketing directors to show families around.
They didn't need to. Their beds were nearly always full.
Feeling the competition from assisted living facilities and other long-term care options, even the smallest homes now have marketing directors and slick brochures. Many nursing homeshave tried to create a homier environment - drapes, plants, even pets for therapy - to compete with assisted living.
Marketing does make a difference. The Prathers decided against one nursing home , in part, because the marketing director "was so cold-hearted," Prather said. "When I asked her questions, she would look out the window."
The Prathers also disliked what they saw in the nursing home 's special Alzheimer's unit: patients lined up in chairs along sterile hallways, with nothing to do - but sit.
But industry representatives say that nursing homes can go only so far with homey touches, and still maintain their role as skilled nursing facilities.
`You kind of walk a line between going into a very residential-looking facility, but you still have to provide the high-tech medical services' expected of a nursing home , said Steve Mould, a spokesman for the Ohio Health Care Association.
He insists that nursing homes aren't the drab, institutional places they used to be. `Somebody who hasn't been in a nursing home in five or six years is just going to be bounced out of their socks. It's a completely different world.'
Many nursing homes also have begun to advertise a specialty in the care of patients with Alzheimer's - a savvy business strategy since up to 60 percent of all Ohio nursing homeresidents have some form of dementia, according to researchers at Miami University's Scripps Gerontology Center.
But the real test is whether a facility backs up its marketing with staff training, according to Judy Turner, executive director of the Miami Valley chapter of the Alzheimer's Association.
`Anybody can lock a door and charge extra money and call it an Alzheimer's special care unit. But until we have strong regulations in the state (defining such units) it means nothing,' Turner said. `You need to look at the staff and their training - that's the most important thing in making a decision. We believe that everyone who interacts with that resident should understand dementia.'
As for the wallpaper and the decorative glitz, `we always tell families that's for you, not the loved one,' she said.
But Linda Hickman says decorative touches can't be dismissed entirely, even for Alzheimer's patients. "Assisted living is just a little homier, like a big family. I guess that means a lot to me - because if I feel at home , maybe Mom will, too."
The Prathers have narrowed their choices to two nursing homes - Spring Meade in Tipp City and Englewood Manor. The Prathers are leaning toward Englewood Manor, they say, because it doesn't isolate its Alzheimer's patients from others in the nursing home .
"They try to integrate them where they'll have a little bit more one-on-one (interaction) with other patients," Prather said. "When you put Alzheimer's patients together, I've found there's a lot of hollering and moaning. And when one starts, it seems all the others do. I just don't think she's ready for that kind of environment. She doesn't react well to that type of thing."
Before Beverly can be admitted to a nursing home , she must be evaluated by the state's PASSPORT program to make sure her placement is appropriate.
A counselor from the Dayton PASSPORT office will be sent to Prather's home to assess Beverly's needs - and to go over the family's finances. To qualify for nursing home admission, patients must require assistance with at least three Activities of Daily Living, or ADLs, such as bathing, dressing or eating.
Under Medicaid's financial requirements, Prather would be able to keep the house, his car and half of their combined assets. However, Beverly's portion of those assets would be limited to $1,500 in savings. All but $40 of her monthly Social Security pension would be applied to her nursing home bill, with Medicaid picking up the remainder.
With those limits in mind, Prather began to "spend down" their assets over the last two to three years, mostly through the $500 to $600 a month he pays for Beverly's day care and by paying off their house.
He has no doubt Beverly could qualify for Medicaid now. Between her Social Security and his government pension, their only savings is the $125 he sets aside each month to meet their semi-annual tax bills and insurance premiums.
Doctors have told Prather that his wife's condition would qualify her for Medicaid, but Prather says he can't bring himself to apply for the program just now. He says he won't . . . as long as his wife's seizures are under control . . . and as long as she struggles to communicate with him.
"There's something she keeps trying to tell me," he said. "She'll sit me down on a stool and say, `I've got to tell you something, I've got to tell you something,' and then she'll say, `I can't say it, I can't say it.' I wish there was some way I could read her mind."
If all goes well, Prather says, he and Beverly can spend another six months together.
"I just hope I'm not making a mistake," he said. "But I want to hold on to her as long as I can. I know she would have done the same for me."