By Dayna Dunteman
Posted on October 26, 2006
Photography by Paul Estabrook
It's something few people ever think about until it happens to them: what to do when our aging parents no longer can take care of themselves. An estimated one in four U.S. households is dealing with the issue right now. And in an overwhelming 80 percent of cases, it's family members themselves who are providing the care. Often overstressed with competing responsibilities, family caregivers feel a crushing impact on all aspects of their lives: emotional, physical and financial.
Those who place a parent in a care facility are often no less affected and, in addition, may be plagued by guilt. Below are four local tales about grown children caring for their parents, each one unique in its set of circumstances, challenges and outcomes—and sometimes, unexpected rewards.
A Home For Mom
One of life's cruelest jokes has got to be the role reversal between parent and child. But nobody prepared Janet Kelly, 50, for the punch line.
Sadly for Kelly, her mother, Rita Kelly, is in a nursing home (known in the business as a skilled nursing facility) with Parkinson's disease, mild dementia and stroke-induced aphasia (a brain injury that limits the expression and comprehension of language). As in the beginning, 86 years ago, Rita Kelly is unable to walk, talk or feed herself.
So this is where many of them go, these "babies" with sunken cheeks and liver spots, whose families (assuming they have them) either cannot or will not take care of them. To the nursing home. Out of sight, out of mind of the rest of the traffic-jamming, Wal-Mart-shopping, Starbuck's-sipping world. Where the smells of sickness and death lurk, hunterlike, beneath the sharp odor of disinfectant, and slack jaws and milky eyes bathe in the glare of television sets tuned to game shows and soap operas.
Three years ago, Kelly and her sister, Jeanne Haydu, shed many tears after their mother suffered a major stroke that rendered her bedridden and incontinent. The nursing home they'd fought so long to avoid now presented itself as the only option. Their mother needed 24-hour skilled nursing care.
Kelly, the youngest of seven, wasn't alone in feeling guilty for sending her mother to live in a spartan, antiseptic room with little to call her own. Like many offspring of nursing home patients, she worried about who would care for her mother—and whether they would care enough.
Signs of failing health, like warning lights in a car, had begun surfacing years before. Rita Kelly had had a brain aneurysm at age 52 and hadn't been able to utter a complete sentence since, although she could, at that time, communicate by writing. She and her husband moved to Sacramento from Pennsylvania in the 1980s to be near two of their daughters and one son. But after her husband died in 1991, Rita no longer wanted to live at the apartment they'd shared. Her children responded by finding her a rented house with roommates.
"She moved in with Ruth—the cutest little lady—and Jack, a man. It was kind of like 'Three's Company,'" says Janet Kelly, chuckling. "It worked out well because Ruth didn't want to be alone and she loved my mom."
But when their mother started missing doses of medication and could no longer bathe herself or cook meals, Janet and clan had to find a home for her elsewhere, a place that would accept Medicare/Medi-Cal recipients. Their mother had no nest egg with which to hire a full-time nurse or to pay for luxurious retirement accommodations. She would have to make do with whatever care the government could support. "I didn't know what she needed," Kelly says. "I remember picking up a state list [of residential care facilities], but it didn't tell me the level of care they provided, their reputations, the number of openings they had, and sometimes not even the price."
After asking around, the family settled on the Almond Avenue Residence Club in Orangevale, a large, state-licensed, assisted-living facility that provides 24-hour care to residents requiring help with medication, bathing, dressing, housekeeping, laundry and transportation. "We were feeling really guilty because she was going to have to share a room,” Kelly says. “That was something that bothered me, but when they need that level of care, their needs are more important than the space they occupy."
But apparently, their mother didn't mind having a roommate. "She'd call us every day and say, 'I happy,'" Kelly says.
As Rita's condition deteriorated and she became at risk for a fall, Kelly and her sister moved her again, this time to E & J's Loving Care Home, a "board and care" house in Sacramento similar to an assisted-living facility, but in a homelike setting with only six residents. In a smaller facility, they reasoned, caregivers would be better able to keep an eye on their mother. Kelly and her siblings chipped in approximately $400, split among them, to cover what Medicare/Medi-Cal wouldn’t, to provide the extra care they felt their mother needed—anything to keep her out of the nursing home.
After their mother's stroke three years ago, Kelly and her sister decided to place their mother at Sierra Care & Rehabilitation in Roseville because it accepted Medi-Cal recipients, they knew someone who worked there and it was close to Kelly's sister's house. (She lives on the same street, and Kelly is only a 10-minute drive away.) Their mother stays in bed most of the day and requires a lift to get into her "geri" (geriatric) chair for meals.
"We feel so sad and heartbroken. We wish we could take care of her ourselves," Kelly says. The sisters arrange their schedules so that one of them is there every day to feed their mother lunch and dinner and oversee her care. Without complicated work and family schedules to intervene, the juggling of calendars is usually seamless. Kelly has flexible work hours, isn't married and has no children, and her sister, whose children are grown, isn't employed outside the home. "We're fortunate to be able to do this, and we want to do it," says Haydu.
It's not that the CNAs (certified nurse assistants, the primary caregivers of nursing home residents) do a bad job. The one assigned to their mother, Virginia, has been there 15 years—an anomaly in an industry that typically suffers high turnover due to low wages (the average CNA salary is $8.15 an hour), lack of advancement opportunities and grueling work. It's just that the little things, so easily overlooked, count for so much: to make sure that Mom sits up straight. That she has a pillow between her knees in bed. That she gets up to go to the dining room every day. That she is dressed, powdered, coiffed and bejeweled—"for her dignity," says Kelly's sister. The women say that’s the least they can do for this sweet, loving woman who once cooked fabulous meals and made every Christmas magical for her children. Kelly says during a recent visit to the nursing home, "The hardest part for us is, she can't communicate to make sure her needs are met. It's hard to know when something is wrong."
At which point her mother, overhearing, flaps her fingers up and down in a teasing manner. The message is clear: "You're talking too much! And what do you mean I can't communicate?" Such moments of humor confirm the existence of quality of life, which gives the daughters fuel to keep going—that, and a lot of labored, almost incomprehensible replies of "Me too" in response to "I love you, Mom." "Isn't she cute?" Kelly says.
This is how you soldier on when the circle of life closes in on a parent in a nursing home. You find something cute and hold on with all your might. You visit as often as possible ("You wouldn't believe how many residents get no visitors," says Kelly) and attend regular meetings with the staff to air your concerns. Just like a parent, you have to be there to be effective, Kelly asserts.
And it never hurts to treat the staff like royalty, or at least acknowledge them for their often-thankless work. The gospel according to Kelly: Give them a pizza, a "thank you" and a smile, and they'll give Mom the world.
"You have to make sure you take care of yourself before you can give to others. And you have to have healthy boundaries. Knowing when it's time to take a break is not really selfish; it gives you the mental well-being to go on. I watch movies and comedy shows, and I get facials and pedicures.”—Janet Kelly
Housing Options Made Easy
Something about the process of placing her mother in a home bothered Janet Kelly. With so many facilities and so little information available, this monumental decision amounted to nothing more than a shot in the dark. There had to be a better way.
Out of desperation came inspiration, and a new career was born—one that has brought purpose and meaning to Kelly's life in ways she never imagined. Kelly, who had worked in marketing and customer service in the health care field, obtained her degree in gerontology in 1998 and started Housing Options Made Easy (HOME), a free referral agency for people seeking residential care facilities in Sacramento and Placer counties. HOME matches clients with activities, level of care, cost and location. After seven years in business, Kelly's database has more than 500 facilities, all of which she or a staff member has visited. She is compensated by about 85 percent of the facilities she refers, and refuses to eliminate options based on lack of compensation. Whatever her clients are going through, she says, she can empathize—especially in regard to nursing homes. For more information, call (916) 977-0188
Behold the fastest-growing trend in caregiving for the elderly: men as wielders of medicine bottles and soup spoons. Never mind that the Y chromosome typically might not be associated with the nurturing gene. Women have no monopoly on love, which is the main prerequisite of the job. As 65-year-old Eugene Johnson can attest, the rest can be learned.
Johnson, an unhurried, deeply religious African-American man with a voice as rich and slow as melted caramel, is among the 28 percent—and rising—of caregivers who are male. A retired aircraft component repairman at McClellan Air Force Base, Johnson looks after his widowed mother, Corine L. Johnson, 82, in his south Sacramento home—a warm home bearing abundant pictures of family and Jesus. Johnson, a widower himself with four grown children and seven grandchildren, cares for his mother because there is no one else; his only sibling, a half-brother, is deceased. And, although he doesn't say it in so many words, it is apparent that he couldn't live with himself if he didn't honor his mother in this way. "That's what I'm here for. Somebody's got to take care of her," he says with a shrug in his voice, as if the concept of placing his mother in a convalescent home were no more viable than flying to the moon on a bicycle.
If only repairing his mother were as easy as repairing an airplane. Last December, Corine Johnson fell and broke her hip after becoming entangled in Eugene's dog's chain while she was playing with the dog in the garage. On top of that, she is diabetic, legally blind (she's had cataract surgery in her right eye) and has mild dementia.
The latter is what troubles her son the most. It's hard for him to reconcile the person she is now with the person she used to be. "She was real religious and kept a tight rein on me while I was growing up," he says. "She'd give anybody her right arm. So the dementia kind of bothers me. When we're carrying on a conversation, she goes waaaay back sometimes. She used to go to church a lot, and now she uses some language that I know she would have never used."
Corine Johnson passes a large part of her day in a hospital bed in a hushed back bedroom, blinds drawn against the searing sunlight. On the walls are computer printouts of medication and exercise schedules, and the shelves support a mini pharmacy equipped to treat everything from bed sores to headaches. The shape beneath the blankets appears insubstantial, husklike, but the nut-brown face peeking out, framed by a tight cap of white curls, is alert and wary. Across Corine Johnson's legs is a narrow red strap, which her son has placed there to prevent her from kicking up violently, as she is wont to do, and hurting herself.
Eugene's days and nights are dictated by the painstakingly slow (almost geologic, by today's accelerated standards) rhythms of care, enough to unravel any Type-A sort.
He's up at 6 a.m. to administer the first eyedrops of the day, which must be given every four hours. Then there are the morning and evening rounds of blood-pressure and diabetes medications, supplemented with copious amounts of calcium, vitamins and protein drinks. Johnson helps his mother walk to the living room for daily Bible sessions, and to the kitchen for meals, which he has to purée in a blender because she has trouble swallowing. He goes to bed at midnight but never gets a full night's sleep; every two hours, he must walk his mother to the bathroom. That's easier said than done; Johnson himself walks with a pronounced limp because of a recently broken bone in his leg (which, ironically, was caused by chasing the same dog that caused his mother to break her hip. "He put us both out of commission," Johnson says.)
One thing Johnson doesn't do is bathe his mother. Like a lot of male caregivers, especially sons, he can't bring himself to cross that line of propriety. For that, he hires a certified nurse assistant from Visiting Angels, who comes for six hours every Thursday and Friday to bathe his mother, do her hair, clean her room, wash her clothes, feed her lunch and administer her medicine. At $17.50 an hour, it's not cheap, but he is able to draw on the money from the sale of his mother's house in San Francisco and his father's retirement benefits. Besides, it's the only way he can devote much time to his church, St. Paul Missionary Baptist Church, where he volunteers for charitable projects. He hires a different caregiver, referred by UC Davis Medical Center, to come in for a few hours on Wednesdays and Sundays so he can attend Bible study and church services.
In addition, Johnson watches two of his grandchildren after school until their mother, his daughter, gets off work. At 13 and 11, the children are becoming a welcome extra set of hands.
Ask Johnson how he handles the stress of it all and he'll shrug—because, he says, honestly, he hardly feels any. "I had a lot of practice [in caregiving] with my wife, who had colon cancer that metastasized to her liver. So it's not like I had to learn a lot because I already knew a lot from taking care of her. And sometimes, when it gets too hectic, I just pick up my Bible and read."
Keeping the Faith
"Before I start the day, I have devotions. Then I read Scripture, and then I pray. We can cope with anything then."—Eugene Johnson
When Carolyn Dailey married her high school sweetheart, Charles Dailey, 39 years ago, she never imagined she would one day be feeding his parents and wiping their nether regions while her husband went off to teach college science and dig for fossils.
Not that she resents the arrangement in the least; on the contrary, she seems energized by it. For when it comes to caregiving, Carolyn Dailey is straight out of central casting. Practical, patient and enviably organized, the 61-year-old relies on the same instincts she used as a teacher and mother of five to care for her father-in-law, who has Parkinson's disease, and her mother-in-law, who has Alzheimer's.
Five years ago, the Daileys left their home in the country between Lincoln and Newcastle to move in with Charles' parents, 89-year-old Darwin and 84-year-old Mildred Dailey, at the home Darwin built in 1960 on two acres overlooking the Granite Bay side of Folsom Lake. Darwin's Parkinson's disease had been diagnosed 17 years before, and as he gradually lost muscle control, his wife had always been there to help him. Until she began forgetting.
At first, the memory lapses were just disturbing enough to raise concern. Mildred complained of forgetting the names of people she had known 20 or 30 years—names that should have been etched in her mind. Or she'd drive to the store and get lost. "Or sometimes I'd come over and she'd say, 'Carolyn, there's something in the kitchen I need but I can't remember what it's called,'" Carolyn says.
After Mildred was officially diagnosed with Alzheimer's disease, she developed complications from a hernia that required a couple of surgeries under general anesthesia.
Carolyn says, "By the time she came home [from the hospital], she didn't know who she was, she didn't know where this house was. Home was back in Utah where she'd grown up. She didn't know her husband; he was a nice man and she cared about him, but she didn't really know him. There was no way she could take care of him even half a day because she couldn't take care of herself. She was at the stage where she might grab her purse and decide she was going home and take off walking down the road. So you had to have somebody with her all the time."
As the elderly couple's conditions worsened, Carolyn—who'd quit all three of her part-time school jobs to care for her in-laws—found herself having to adapt her routine to stave off crises. A simple meal could be a minefield. "When I first started taking care of Mildred," she says, "you could put a plate of food in front of her and she knew what to do with it. Now, she's gotten to the point where she really doesn't know how to use a spoon. I can put a glass in her hand and she'll look at me like, 'What's this for?' And if I help her drink, then she might be able to drink the rest of it in between my feeding her. But then again, she might decide to look in it to see what's inside and spill it.
"I feed both of them breakfast together. Darwin cannot feed himself. And I have to keep him swallowing—he'll stop swallowing when I'm helping her, and I have to remind him, 'No, you can't do that; you've got to keep going.' Because when he gets food in his mouth and quits swallowing—his head is tipped to the side—it'll tend to run into the lungs. And then he starts coughing and then I have to aspirate the stuff out, or I have to reach back with my finger and get it out so that he doesn't choke to death. It's a balancing act."
Darwin and Mildred spend most of their time together in an upstairs bedroom, where the mirrors are covered so Mildred can't argue with her reflection. Carolyn provides her father-in-law with reading materials and helps him walk the few steps between his reading table and the bed. She takes him down the hall to the living room to watch television in the evenings.
"Mildred used to wander down here all the time, but the TV agitated her," Carolyn says. "She doesn't know the difference between TV and reality, so sometimes she'd talk to it and be upset. Or she'd want to fiddle with Darwin and he couldn't watch the TV. Or she would tear things apart; she might take the flowers out of the vases."
Bathroom routines are usually no less eventful. When the Depends are off, anything can happen. Says Carolyn, "We've put Darwin on a catheter, so he has a bag for urinating. Now Mildred, she has forgotten how to go to the bathroom. The real difficult time was when she kind of knew but kind of didn't know. Especially after all night, if I didn't get up there before she got out of bed in the morning, she'd get out of bed, pull down her pants, then sit on the couch and go. I had to wake up a little bit earlier, or as soon as I heard her make any sound at all on the monitor, I'd race up there.
"Mildred can be very happy, very accepting. She can also be very paranoid and frightened of what's happening. If she doesn't want [help in the bathroom], she's liable to bite you or hit at you. She grabs hold and has a lot of strength. So you have to be very careful you don't hurt her in the process of doing what has to be done."
Carolyn's mother-in-law also exhibits jealous behavior toward any woman (besides Carolyn, whom she's used to) who visits Darwin. "If I have a lady come in—even if it's her daughter—she'll get in their way and try to get their hands off him," she says.
Unlike the case in many families, Carolyn doesn't resent her sister-in-law for not being the one to provide full-time care, even though she lives in the area. "She's had enough things going on in her life; she just wasn't available," Carolyn says. "And it's very difficult for a daughter or son to take care of a parent who has Alzheimer's."
Carolyn's husband, Charles, an instructor of life sciences at Sierra College, is home part of the time to provide hands-on assistance. He is in charge of bathing his father. He says he finds his caregiving tasks rewarding, and is thankful for this opportunity to grow closer to his parents—especially his father, with whom he can still converse. Although his mother's Alzheimer's troubles him, he finds comfort in the fact that she feels no pain. "Growing up," he says, "my parents were caring parents, but we were in the construction business and we were busy 18 hours a day. We never really did take the time for each other. This has forced us to slow down and take the time for each other."
The Daileys say they would never consider placing Darwin and Mildred in a facility. "I see no reason to," Carolyn says. "To me, this is family and that's what families do."
But still, she needs a break sometimes. "We have two timeshares, one at Tahoe and one in Reno," Carolyn says. "So one week in the summer and one week in the winter, Charles knows that he's here with his parents, which allows me to go. I get everything set up and I have it all scheduled for him and I leave him a list. Unless there's a dire emergency, he doesn't call me and I don't check in. This is my time to not do anything I don't have to for anyone else."
“You need to do it (provide care) because you want to do it. That way, both the caregiver and the person receiving the care will have a positive attitude."—Carolyn Dailey
"I don't have any peace of mind. I don't want to do it, but I have to do it because I'm the daughter. It's not fair!"
Such are the sentiments of Emily Lim, 52, of North Natomas, who finds little reward in caring for her elderly parents, but plenty of anger, frustration and guilt—which experts say is normal and nothing to be ashamed of or concerned about, provided major depression doesn't set in.
Lim is the only daughter of Chinese immigrants who came to this country during the 1930s. Her father, Leonard, was a waiter and a dabbler in commercial real estate, and her mother, Nancy, worked in a cannery. The couple were uneducated and spoke little English. Even after decades of living in the United States, they clung to their old, rural Chinese ways, including their beliefs about who should care for them in their old age. "To me, it's almost like brainwashing,” says Lim, who has an older brother in Redwood City. “They've always instilled in the children of Asian culture that, 'When we grow old, you're going to take care of us.' I remember they always said that to me."
The time has come. A couple of months ago, Lim's mother, 85, who'd been suffering the effects of a stroke she had three years ago, went to live at the Asian Community Nursing Home. Lim's father, 84, remains in his own home, a duplex south of Land Park, but requires a watchful eye and someone to drive him around. "He goes to dialysis three times a week, has a pacemaker and rheumatoid arthritis. He has glaucoma, which makes him blind in one eye, has a hard time walking and he's partially deaf—and he's still plugging along," Lim says.
Meanwhile, Lim has had to figure out how to hold onto her full-time teaching job in the Sacramento City Unified School District without losing her mind. Her brother comes on Saturdays to take their father to his dialysis appointment, cook him dinner and stay overnight, but she wishes it could be more.
At the very least, she'd like some appreciation. "My parents need me because they're old, but I don't feel validated," says Lim, the mother of two sons, ages 20 and 18. "In our culture there's no hugging, no touchy-feely, they don't say, 'I love you,' they don't say, 'Thank you.' They have this thing, 'I'm your parent, do as I say.' That's it. There's no discussion. And it's still like that to this day. There doesn't seem to be any empathy. They don't know what it's like; it's so easy for them to delegate, demand and want, not realizing that hey, I have a job, I have a life, I can't be doing this. And it makes me feel really guilty.
"So it's been a total struggle. Sometimes all I want to do is run away. Get me on Amber Alert, I don't care if you can't find me; I'm gone."
It doesn't seem to matter that Lim isn't doing so much of the day-to-day hands-on care anymore. She's hired four different caregivers—two friends of a friend plus her older son and his girlfriend—to look after her father between his dialysis appointments. The caregivers work for $10 an hour because her father is too frugal to pay the $18 or so per hour that an agency would charge. (On the other hand, his lifelong penny-pinching resulted in enough savings to enable him to pay the $6,000 monthly tab for his wife's nursing-home care.)
"My parents never spent money on themselves. They never went on vacation, they eat simple foods, they wear raggedy clothes. To this day there's a 'clothesline' in the back yard that my mom used to use all the time—it's an extension cord that's not working," Lim says.
Lim functions, reluctantly, as the master scheduler, check writer, caregiver logbook-keeper, landlord and errand girl for her father. "You have no peace of mind," she says. "I'm tired of the constant, 'We need diapers!' (The nursing home does not provide these for her mother.) 'We've just run out of medication!' 'We need bananas!' I started out paying (for supplies) but it's just sucking me dry. Little things, like supplies and food, add up to a lot. In the beginning, I used to take my father to and from his dialysis, and I would think, 'My gas! That's my gas!'"
Before her mother went to the nursing home, Lim really felt she was at the breaking point. The stroke had left Lim's mother immobile, incontinent and unable to feed herself. Lim and her father were providing most of her care by themselves, with little direction on how to do it.
Lim says, "I did not know how to lift her; I was never trained on how to change and lift and roll. I would break my back and my shoulder was hurting. I would tell my father, 'We can't do this!' and he goes, 'Just do it anyway.'
"There are so many things that people just don't know until—boom!—it happens to them. Nobody ever thinks about it until it happens to you, and then you wish you were prepared."
Respite care was the obvious solution to Lim's and her father's struggles, but finding it presented its own set of challenges. Not only was it next to impossible to find a caregiver who spoke her mother's dialect, but Lim couldn't even find one who could provide consistency or perform the duties to her satisfaction. "I've gone through . . . my God, I must've gone through 15 caregivers," Lim says. "Because when you call for respite care from an agency, it doesn't necessarily mean you get the same person all the time. I've had ones that are totally not skilled in that kind of care; they're just kind of superficial. I had this one caregiver, I don't know what she was thinking. She threw in a bunch of bedsheets full of pebbles (excrement) and I had to put up a sign: 'No pebbles before you put in washer!' Oh, the things we go through!"
At times like this, Lim knows to pick up the phone ASAP. "I work with a social worker at UCD Med Center, and occasionally I'll call her up and say, 'I've gotta vent!'"
Lim does not mean to suggest that she feels coldly toward her parents. "Absolutely I have empathy," she says. "When my mom had the stroke, she still had some brain left and it would just break my heart. She'd say, 'Just bring me a rope.' Isn't that awful? And my dad, he can't do anything. He can't control his money and he can't go where he wants and he doesn't drive. To be homebound—the cabin fever thing, it doesn't feel good. My God, these poor people; they can't go anywhere. That's awful, to be stuck."
As those last words fall out of Lim's mouth, it's hard to know exactly about whom she is talking.