One Day of Alzheimer's
Caring for a loved one with Alzheimer's is a daily lesson in heartbreak.
Greg Pleva hasn’t conversed with his wife, Lucy, in nine years, but in some ways, he knows her more intimately than most spouses ever will.
For instance, Pleva knows he’ll need to dig out bits of food trapped in the receding gum line on Lucy’s right side; he knows when Lucy is full because her chewing slows, as if she’s become suddenly thoughtful. He knows Lucy sometimes swallows the new toothpaste he has bought her, and the new mouthwash. He doesn’t know if she likes the taste, he can only assume.
He knows things he wishes he didn’t and is thankful that Lucy—who was diagnosed with Alzheimer’s disease in 1994—never will. The few signs of engagement that Pleva gets from Lucy, such as sipping apple juice from the cup he holds to her lips, or opening her mouth for forkfuls of his homemade pork tenderloin, or scratching the couch cushion with her fingernails in spasmodic little bursts, will eventually disappear. Then, like other Alzheimer’s caregivers who find themselves living, essentially alone alongside the person they love, Alzheimer’s disease will isolate Pleva as effectively as it has isolated Lucy.
All day, every day
Greg and Lucy Pleva live in a modest, east–Ypsilanti, Michigan, ranch. Greg is typical of Alzheimer’s caregivers. In the early stages when Lucy was more aggressive, he got very little outside help because he says there was nothing available that he could afford regularly, or if there was he never found it. The one daughter he and Lucy have left in Michigan “has her own life,” he says, and he doesn’t begrudge it, though he used to wish for more help from his three children. Now that Lucy is docile and easier to care for, his two brothers can spell him, and he hires a caregiver so he can polka-dance for a few hours once a month, and every Tuesday so he can run errands. Other than that it’s Greg and Lucy, all day, every day.
It’s tiring and discouraging and at times heartbreakingly lonely, but also gratifying. He loves her deeply, says he’d rather have this time with her than none at all.
“I wouldn’t give this up for nothing,” he says. “It’s funny, you love your wife, but you love her in a different way than you did 20, 30, 40 years ago. It’s a real love.
“If I’m physically capable of caring for her, no matter what, she isn’t going anywhere. She’s remaining with me.” On this day, Greg rouses his wife from bed at around 9:35 a.m., a bit later than normal because they were up late the night before watching The Sopranos. Greg dresses Lucy, takes her to the bathroom and rinses her face, then wheels her to the kitchen table, starts breakfast.
“I keep a daily log of what I feed her.” He points to the current page. “Here I keep track of all her meds and her bowel movements. It’s something I’ve come up with. If I took her to the doctor and they asked questions, I found that I didn’t have the answers.”
Emergencies happen, and Lucy can no longer communicate.
“There have been so many things that have happened over the years with the Alzheimer’s, it’s been terrifying,” he says. For example, last year Lucy fainted twice at the breakfast table. Scared the daylights out of him. Now, he knows to quickly lean her back in her wheelchair until her feet are above her head, so he can find a pulse. Luckily, Greg is a big man, even at 68, and can still do such things.
“Today, I’m giving her waffles, yogurt, strawberries, and V-8 juice,” he says. Greg usually waits for Lucy to finish eating to have his own breakfast. He scoots up to the table next to his wife and spoons the food patiently into Lucy’s mouth. He crushes her pills onto her waffles. It takes about an hour for her to finish, but it seems longer because there are no other distractions. That’s all there is, just bite after bite of Lucy’s slow chewing.
Lucy Pleva is striking. Her face is smooth and unlined, light olive. Her cheekbones are high, her skin taut, her brows arched. Greg has dressed her in a feminine, comfortable-looking sweat suit. She could be in her forties, but she’s 71. She’s listing slightly to one side of the wheelchair, and watching her, one has to wonder how much skin wrinkling is caused by everyday worries, which Lucy has not had for years.
“Oh yeah, she was beautiful when she was younger,” Pleva says proudly. He first set eyes on her amid a group of friends when he was stationed overseas in Puerto Rico. “I seen her in with the crowd of girls and right away the heck with all of them. I liked her,” he recalls. A month later his buddy found him a blind date, and to his delight, it was Lucy. The couple fell in love, and despite cultural differences that caused some family problems, they married a short time later.
He retrieves a picture of Lucy, taken in the fall of 1998. She is standing in a park, holding a walking stick. Her eyes are clear and alert. In the picture she’s already had Alzheimer’s for four years, but nothing about her stance or her gaze looks wobbly or hints at sickness.
When Lucy was diagnosed in 1994 at age 58, neither understood what they were in for because, Pleva says, nobody explained it to them. After the diagnosis, her forgetfulness seemed to stabilize and the couple was lulled into an uneasy acceptance—for them at least, Alzheimer’s seemed to mean that Lucy would always be a little more forgetful than most. An inconvenience, but surely livable, and with the Plevas’ sense of humor, they could even joke about it. “She used to tell me—what the hell did she use to say? It kind of makes me emotional,” he says, his voice going hoarse. “Something about my being a good man and that I deserve to move on with my life. I told her I’d take care of her and I do.”
Then she got much worse.
Think of a power outage viewed from above, and the grids that have gone dark are patches of Lucy’s brain responsible for different functions. Eventually, as patches continue to wink out, she will lose all motor capability and be unable to swallow at all. The thought frightens Pleva, and he doesn’t like to discuss it. Doctors do not know exactly why Alzheimer’s happens, and there is no cure.
Lucy was always a calm woman, Pleva says, but in 1999 she got violent. She wandered off, she vandalized their home. She grabbed knives, threatened to kill him. He’d wake alone in their bed to faint sounds in the kitchen. He’d find Lucy had emptied every canister, overturned chairs, cleared the shelves. She’d scream and threaten, urinate where she stood. Eventually, she was committed to a psychological ward at St. Joseph Mercy Hospital, diagnosed as psychotic. Pleva didn’t believe it.
“I think it was the disease, she didn’t know how to handle it. I think it was her way of rebelling,” he says. In 2000 he put her in an assisted living facility for eight months because he almost had his own breakdown.
“I didn’t want to put her in a nursing home,” he says distastefully. “The look, the smell, the people, the way they looked. . . I went and seen her every day, unless I was ill,” he says. Over the objections of his family and the doctors, Pleva’s plan was to bring her home when his health improved. Pleva pops another strawberry in Lucy’s mouth.
“One day,” he continues, “I went to see her and they said she fell and had a bang on her head. I said, ‘Well, I’m taking her to the doctor.’ I went to put her coat on and she went ‘oh, oh, oh,’ and it turned out she broke her wrist.” He took her home that day and she never went back.
It was the first of only two times since her diagnosis that they’ve been separated. The second time was last April, when he put her in a local nursing home for six days while he recovered from prostate cancer surgery. At $150 a day, the care was awful, he says, and the thought of Lucy existing in such a place permanently, if something were to happen to him, makes him sick.
Pleva, who brushes Lucy’s teeth twice daily and gives her special mouthwash, says the new tube of toothpaste he sent along with her to the home was never opened, nor was the lotion for the slight sore on her bottom.
“They didn’t do anything they promised, and when I complained they basically ignored me,” he says. Pleva says that not just nursing home staff but doctors are unresponsive. “Just to make her comfortable is like sitting around waiting for her to die. I don’t look at it that way.”
Even friends and family are unresponsive to Lucy now. “That’s the worst thing about the Alzheimer’s. People kind of just drop away from you. They don’t know what to say, how to act. So they don’t come around anymore.”
After breakfast, Pleva dresses and washes Lucy, massages lotion into her face and neck. He cleans her nose and ears with a cotton swab every other day. He wheels her back to the living room and pulls her out of the chair to his chest while she weakly grips his back. They shamble a few steps, and for a moment, they are slow-dancing. He checks her diaper.
Pleva settles an unresponsive Lucy into the easy chair. Her eyes are closed and she looks asleep. It’s about 11:15 a.m. “She’ll be like that most of the day,” he says.
Now it’s time for dishes, phone calls, journal entries, and a talk show he likes, called The View.
A little while later, he checks her diaper again. “I think I’m going to double-dip you,” he tells her, and pulls on two so the next time he can just slip one off, a practice that saves his back.
It’s a chilly, bright November day, and sun streams into the living room. The television prattles on, one glittery, frivolous story after another: Lance Armstrong dating one of the Olsen twins, a teacher who’s run off with a young male student. Later, Oprah features an hour of experts telling how to stay young-looking. The world is spinning along at warp speed, but inside the Plevas’ modest home, time has ground to a halt. Pleva must do everything for Lucy, and there are a million details to remember. He tends to these minutiae all day, every day, with nobody to talk to, and the house has adopted a slow, shuffling rhythm all its own.
“I feel lost now. I have nobody to talk to,” he says. “Like I want to move to Florida, but I don’t know if it’s the right decision.”
Life with Lucy
“I try to make it as normal as I can,” he says. “I take her for rides, take her to the park where we used to walk, I take her to the store. She seems to enjoy it.” Any little response from Lucy is magnified a hundredfold, he says, because it is so rare. He is hurt and surprised regularly as Lucy’s tastes change, though he knows that’s unreasonable. Once, he made shrimp scampi, a meal she used love. After hours of work she refused to accept the forkfuls he held to her lips. He was crushed. “I know it’s not her fault, it’s her way of saying she doesn’t want it.”
Winters are lonelier because the cold keeps the couple housebound, plus now the price of gas is so high that Pleva has been rationing their trips. They’ve spent a month in Florida for the past few winters, with his brother and sister-in-law, but this year the prices went up unexpectedly so he doesn’t know if they can afford the trip.
When they drive down, he stops every two hours to walk her, and they get a hotel at night. He looks for one with a continental breakfast so that he can bring her meal back to her before they leave again. Last year the Plevas’ friend Lillian came to help, and it was a godsend. Lillian, Pleva says, does more for them than anyone else. They met years ago at a polka dance. His brothers visit occasionally, and his daughter “once in a while.” For the most part, he and Lucy are alone. They had a good Christmas, he says, except for Christmas Eve and Christmas Day, when there were no visits with or from family, and nobody to talk to. One day around New Year’s, during their morning routine, Lucy gave him a Christmas gift: she smiled at him. The small gesture gave him a joyous jolt, he says.
“I do get lonesome. You want to be with other people,” he says, adding that Alzheimer’s made him realize he was more of a “people person” than he thought.
On this day, Pleva puts Lucy to bed around ten. He is exhausted and sinks into the easy chair where Lucy has spent much of the afternoon and evening. It’s both physically and emotionally draining.
“You don’t really have much of a life,” Pleva says. “Lucy has no life, and I’m right behind her.”
The Public Health Toll
- Between 4.5 and 5 million Americans currently have Alzheimer’s.
- The Alzheimer’s Association predicts that the prevalence of Alzheimer’s may reach 16 million by 2050 if no treatments are found to prevent the disease or delay its onset.
- An estimated 220,000 to 640,000 Americans ages 55 to 64 have early-onset Alzheimer’s and other dementias.
- The present cost to the American economy of Alzheimer’s is approximately $148 billion per year and rising; Alzheimer’s will soon be the most expensive disease in the U.S.
- A recent study estimates that total Medicare spending on treating beneficiaries with Alzheimer’s will increase from $62 billion in 2000 to $189 billion in 2015.
The staff at the Alzheimer’s Association, Michigan Great Lakes Chapter, Ann Arbor, assisted with this article. The Alzheimer’s Association provides education and support services across the nation for individuals with Alzheimer’s disease, their family members, and caregivers. For more information and support call the association’s 24/7 toll-free Helpline at 1-800-272-3900 or visit www.alz.org.
By Laura Bailey
Photo by Peter Schottenfels
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Care for the Caregiver
When a disease like Alzheimer’s strikes, it usually hits two people, as Cathleen Connell knows well. Connell, a professor of health behavior and health education at SPH, watched her own mother struggle for years to take care of her husband, who had Alzheimer’s. “His symptoms and behaviors were such that, looking back, he probably should have been in a long-term care facility for the last six months of his life,” Connell admits.
But like Greg Pleva, Connell’s mother chose to care for her husband at home. Most spouses who make that decision do so from some combination of cost, comfort, privacy, and devotion, but one fact remains: the demands and health risks for caregivers are immense.
Connell has studied caregiver health for more than a decade, and she’s found that absent the chance to prioritize their own health needs, aging caregivers are more prone than others to chronic illness, functional limitations, or disability, as well as to anxiety, fatigue, and reduced cognitive functioning. They are particularly vulnerable to stress-related adverse health consequences, including overeating, sleep problems, and, in some cases, increased drug, tobacco, and alcohol use.
Connell’s research identifies several strategies to help caregivers stay healthy, but exercise is critical. It improves mood and when practiced regularly can assuage feelings of guilt for taking so-called “me time,” Connell says, adding that health-care and social-service providers who work with caregivers should encourage exercise as a stress reliever. When available, respite programs can allow caregivers to exercise or engage in outside activities, and telephone counselors can help caregivers foster regular exercise regimens. Joint exercise programs for both the caregiver and the care recipient are also welcome if the recipient is in the early stages of Alzheimer’s.
Pets can also reduce stress, and while they’re not for everyone, Connell notes that the bond between pets and housebound caregivers—and in some cases even patients—can be very strong. If pet ownership is too burdensome, caregivers might “borrow” pets from friends or neighbors for short stints or arrange for occasional pet visits with an animal assistance program.
With Alzheimer’s expected to reach epidemic proportions as Baby Boomers age, the public health burden of caregiving in the U.S. will deepen. “For what other illness,” Connell asks, “are you so on your own?”
Cathleen Connell directs the Education Core of the Michigan Alzheimer’s Disease Research Center (MADRC), the only federally funded Alzheimer's research center in Michigan and one of just 32 centers nationwide.
MADRC is currently recruiting for brain imaging and observational studies. The center seeks individuals who are experiencing early memory loss with a diagnosis of mild cognitive impairment, Alzheimer’s disease, Lewy body disease, or frontotemporal disease. The studies are designed to identify brain changes and abnormalities that may predict Alzheimer’s, and to track health and memory changes in older adults. MADRC Health Educator Cassie Starbuck also expects the center to begin recruiting for clinical trials in the near future. Starbuck says advances in the prevention, diagnosis, and treatment of Alzheimer’s disease and related disorders are only possible when people participate in research. For more information call 734.936.8764 or visit www.med.umich.edu/alzheimers.
Although by itself it’s neither necessary nor sufficient to cause the disease, a variant on human chromosome 19—the apolipoprotein E (APOE) _4 allele—has been widely confirmed as a risk factor for Alzheimer’s, which means scientists can now tell whether someone has a genetic predisposition for the disease. For the millions of people who have a parent or sibling with Alzheimer’s, that poses a dilemma: if they had the chance, would they want to know their genetic-risk information?
Given the limited capabilities of APOE testing and the lack of treatment options for Alzheimer’s, the medical community advises against using such genetic testing for predictive purposes. But Scott Roberts, an assistant professor of health behavior and health education, believes research is needed in order to determine if, when, and how this kind of testing might be implemented in the future. Roberts is co–principal investigator of a series of NIH–funded clinical trials designed to evaluate the impact of using genetic testing to tell people the degree to which they’re at risk for Alzheimer’s.
Findings from one trial in the series showed that genetic-risk information does not seem to adversely affect the psychological well-being of participants, and is in fact more likely to be a source of relief than distress. The volunteer participants in that study were all adult children of a person with clinically diagnosed and/or autopsy-confirmed Alzheimer’s. Most said they wanted the information in order to cope emotionally with the threat of disease and to do advance planning, rather than for their medical care. Few of them changed their health or life insurance in the 12 months following the study, but those who had learned they were predisposed to Alzheimer’s were more likely to change their long-term insurance situation and to modify their behavior—by adding vitamin supplements, for example—to potentially reduce risk.
Roberts says the findings “highlight the powerful effects that genotype information can have on individuals.”
Besides Alzheimer’s, Roberts’s research has ramifications for other complex diseases such as diabetes, stroke, and heart disease. He’s also looking at the utility of a health-education program for people who suffer memory loss but don’t yet have full-fledged dementia, a condition known as mild cognitive impairment. “Much of my research has to do with risk communication and the idea of empowering people to take steps to plan for their future,” he says.
The issue of genetic counseling for common, complex diseases raises important health policy questions, including how much specialized genetic counseling people should have before receiving test results, and in what format. Roberts notes that more and more private firms are selling genetic-sequencing services directly to consumers, but often these firms offer little or no follow-up counseling, and they’re unregulated. Few measures are in place to prevent long-term care insurers from using genetic information to set premiums or even deny coverage. In the case of families affected by Alzheimer’s, that could be catastrophic.
Roberts and his colleagues are at a relatively early stage in Alzheimer’s disease risk-modeling. But as scientists learn more about the disease, and ideally find ways to treat and prevent it, the need for effective risk-modeling and communication will be critical.