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."
EARNEST AND BEVERLY PRATHER used to go dancing almost every week. But now that Beverly is in the later stages of Alzheimer's Disease, they resort to cutting the rug in their Dayton home. Even though Beverly can't remember some people in their photographs or paintings around their fireplace, she can follow Earnest's every step. |
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."
ACTIVITIES LIKE BINGO at adult day care at Sunrise Assisted Living of Englewood help Beverly stay active and give Earnest a much-needed break from being a caregiver. |
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. By law, these are available from the nursing home upon request, from the Internet at www.medicare.gov/nursing/home/asp or by calling (800) 633-4227.
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 homes have 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.
BEVERLY PRATHER stands by a window at Sunrise Assisted Living of Englewood, where she goes for adult day care. About a month ago, her husband Earnest noticed her across the lobby staring blankly into space. |
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 home residents 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 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.
Estimating that he has six more months before he must put his wife Beverly into a long-term care facility |
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. "Bt I want to hold on to her as long as I can. I know she would have done the same for me."
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Long-term health care coverage isn't for everyone
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There are many long-term care alternatives to choose from