Read the entire "Gray Area: Utah as it ages" series of reports here.
The other night, returning from dinner, Irene Gaddis asked her husband where they were going. Home, said Cal, and pretty soon they were driving through the gates of the condo complex.
"I want to go home," Irene said as they pulled up to their garage. Then she started to plead. "Please take me home."
Cal had two options then: to insist that they were home the house they've lived in for 15 years or to keep driving. Forty-five minutes later, after they had ridden around several neighborhoods, Cal distracting her with comments about how pretty the houses were, they drove back to the condo and everything was fine.
Five years of caring for a wife with Alzheimer's has taught Cal that it's better to change the subject than try to reason. He's also learned that if you're a caregiver you need to give yourself some caring, too. Accept help if it's offered, find it if it's not, he counsels. Join a support group. Take a class.
There are, by some estimates, more than 44 million family caregivers in the United States, many of them caring for aged parents or spouses. Some of this care is fairly minimal; some of it is so depleting that it makes the caregivers themselves sick. One study found that the immune systems of full-time caregivers are four times more vulnerable than those of non-caregivers, that even their wounds heal more slowly. This vulnerability can persist for years after the caregiving stops.
It's impossible and pointless to rank what kind of caregiving is harder than the next. But the consensus is that caring for a person with dementia produces its own kind of weariness. On top of the sleep deprivation and isolation most caregivers feel, there's the unique exhaustion of caring for a loved one who is no longer really sharing a life with you, who is both there and not there.
"Ambiguous loss" experts call it. "Unlike death, there is no closure, no official validation, and sometimes little community or religious support," explains a fact sheet provided by the national Family Caregiver Alliance, adding that this creates "a constancy of sorrow."
Here's how one Utah woman describes the journey she and her husband, both in their 80s, are taking through their old age. They used to have a big life. Now her husband, once so brilliant and engaging, can't remember how to make change for a dollar. For the past three years, as his dementia has worsened, her life has shrunk along with his. "I go for days without seeing anybody," she says. She spends those days at his side, trying to keep things steady and cheerful.
"We're off to see the wizard!" she'll say, pulling him off the sofa when it's time to take a shower. "Come on, upsy-daisy." She's a little embarrassed that she talks to him as if he's a child, but she knows that if she keeps everything lighthearted, her husband is more likely to go along. "Light, vague and jokey," she explains.
It's exhausting, this effort to make it all seem effortless. It's exhausting, too, to answer the same question over and over, even to hear the same kind words repeated endlessly. "You know I love you," he'll tell her as they sit on the sofa. And two minutes later, as if the thought had just occurred to him, "You know I love you." And then two minutes after that.
He loves her but can't remember the life they lived together. With everything prior to a minute ago now the irretrievable past, what can he talk about? This is what she misses most.
She takes him for little outings, to the library or the store. In the afternoons they play Scrabble, and the odd thing is he can sometimes beat her. He can make a seven-letter word and then not know how to add up the score. In the evenings they watch videos, although he can't really follow the story line. But as a caregiver you have to keep your sanity, she says.
"She has to do all his remembering for him, and all his coaching and coaxing," says Nick Zullo of the Utah Alzheimer's Association. It's as if she's living two lives, she says, hers and his.
A few weeks ago she ended up in the emergency room, with symptoms that suggested a stroke. It turned out to be stress. So her family and friends encouraged her to put him temporarily in an Alzheimer's facility, just to give her time to recuperate.
It breaks her heart, she says, to hear that he stands by the elevator of the Alzheimer's unit asking when she'll come to get him. Visiting him one day recently, she remembered how tiring it is to talk to him. But, although the children are urging her to put him in long-term care, she can't wait for him to come home.
"As long as he knows who I am, I'll take care of him," she says.
Over and over, this is what you hear from caregivers, even when they are faced every day with dementia and diapers: They love this person.
Caregiving can be an opportunity to really get to know each other, even to heal relationships, and many adult children say they're grateful for the chance to give back to their parents. Even with dementia, there are moments of connection. And even with dementia, if you can keep your perspective, tender and funny moments will find you. One daughter laughs when she remembers visiting her mother who had recently been placed in a nursing home. "Oh good, comic relief," Mom said when she saw her daughter. "This conference is endless and the speakers are so dull."
The daughter found that if you can go along for the ride roll with the confusion it's not so bad.
"Life is not always the way it's supposed to be, but the way we cope with it is what makes the difference," gerontologist Dini Droguett tells caregivers.
Droguett cared for her own mom for four years, buying a bigger house so Mom could have a main floor bedroom, giving up vacation time and even taking a lower paying job so she could spend more time with her mother. But Droguett never considered putting her in a nursing home. "I wanted her to die in her own bed."
Along the way she had to learn to follow her own advice: Don't try to do all this alone. Little by little she let more help in: someone to stay with her mother while Droguett did the shopping or the laundry, a nurse to do the bathing, someone else to knit with her mom. Her husband and married daughter also helped. The daughter would put her own children to bed, then come over to climb in bed with grandma and tell her about her day.
The hardest thing for Sheron Hoggan is exchanging one type of intimacy for another. Her husband Alma, 86, gets up and dresses himself but he never bathes, doesn't shave or brush his teeth. She has to remind him or do everything herself.
Sleep deprivation, perhaps even more than coping with incontinence, wears caregivers out, experts say. Marta Polanco sometimes sleeps with her mom, who has breathing problems, or sets her alarm to get up and check on her. Her mom has myriad health problems, including diabetes and heart failure.
When Marta is at work, her mother, who doesn't speak English, feels isolated, so Marta has arranged for someone who speaks Spanish to visit her a few hours a week. And there are other supports for caregiving, including adult day care. Using these supports, even a nursing home, doesn't diminish one's commitment to the parent or spouse.
Dementia patients, Droguett says, typically need help with basic tasks like dressing and toileting sooner and longer than other elderly.
Droguett runs a support group that Cal Gaddis attends. She teaches that "You don't argue, you don't correct and you don't educate. You validate where they are." Validation is important for anybody being cared for, she says. "You need to take the journey with them."
Cal and Irene met in a journalism class at East High and married on Christmas Day 65 years ago. Today their conversations are mostly one-sided, but Cal continues to talk to her about world events and books he's reading, and to keep their life as lively but as soothing as he can. "I get tired and cross and lack patience, and I hate myself for that," he confesses. "That's the hardest thing. But you tell yourself she'll forget about it in a minute."
Most caregivers in the United States especially grown children caring for parents are women. But husbands often end up taking care of their wives. Chuck Kreher is taking care of Pat, once a formidably bright and capable woman who headed the state's child care program. "We're still very much in love," says Kreher about his wife, who was diagnosed with Alzheimer's five years ago. Pat tends to wander, so he keeps her nearby at the grocery store by having her push the cart, and he plans to get a baby monitor so he'll hear if she opens the front door at home. Although he originally interpreted her actions as misbehavior throwing the contents of her closet on the floor, putting the TV remote in the waste basket he has learned to be more compassionate, he says, now straightening out her closet several times each day without getting angry. Twice a month he attends a men's group run by Salt Lake County Aging Services caregiver support trainer Kathy Nelson.
Chuck was absent from the group's most recent meeting he'd had a small heart attack a few days earlier. The men who did attend were in different stages of caregiving. One had to put his wife in an Alzheimer's facility when caring for her at home became too difficult. Another man, whose wife had multiple sclerosis for 25 years, hardly knows what to do now that she has died. A third is still trying to come to terms with his wife's growing dementia, getting angry with her recently when she went into the kitchen to make him a sandwich and then forgot to do it. "Some days I just want to take off," he says, his voice cracking.
"Every instance is so individual," says Nelson. "Every perfect intervention for one caregiver might not be for another."
Ann Marcusen faces an unusual challenge in keeping track of her husband: Lex has spent his entire life as a gifted athlete, and even at 82 and suffering some memory loss following a long illness, he hasn't slowed down.
He was a track star at Utah State University and has been an athlete his whole life, at BYU and Stanford University, and more recently at the Huntsman Senior World Games, where he has won dozens of medals, not only for running but for pole vault and high jump, long jump, shot put and javelin. He cross-trains up to four hours a day, sometimes walking or biking from Kaysville to west Farmington and back.
Sometimes he gets sidetracked on the way home, leaving her to wonder where he's gone. Ann bought him a phone so she could call him when he was on these jaunts, but he lost the phone. He now has an I.D. bracelet courtesy of the Utah Alzheimer's Association.
Ann says she actually worries about him less when he's out than when he's wandering around the house. Like a lot of caregivers, she has to put up with her husband's "rummaging and rearranging," finding his hearing aids stuffed in odd places in the house. Sometimes she gets frustrated, but then reminds herself "anger doesn't get you anywhere."
At least once a week, Ann devotes a day just playing with Lex, doing whatever he wants, laughing like they always have. They also spend a lot of time together looking through a scrapbook Ann made of old family photos, news accounts of Lex's athletic prowess, and poems he loved as a child. He can recite many of these poems by heart but can't remember from one minute to the next that he just pointed out a picture of his father.
Eighty percent of caregiving in the United States is done by families, all of it for free. The current estimate of the market value of this family caregiving is $375 billion a year, more than is spent on Medicaid.
Because of rising health-care costs and the belief that old patients do better if they can leave the hospital sooner, family caregivers are being asked to do more than ever, including managing medication pumps and complicated wound care, says Rand Rupper, who works at the Veterans Administration and is a professor of geriatrics at the University of Utah.
Experts cite certain truths about caregiving: Men are more likely to accept outside help; sons are more likely to abandon ship when there's a need for diapering; primary caregiving usually falls more heavily to one adult child in a family, which doesn't prevent the siblings from second-guessing and criticizing.
Family caregivers, especially wives whose caregiving increases so gradually they don't even realize their new role, are often reluctant to ask for help, says Rupper. Some caregivers are too proud to seek help, or feel guilty leaving their spouse or parent with someone else, or worry that the care won't be sufficient or that something bad will happen when they're gone.
But caregivers need "quality" breaks, urges Sonnie Yudell of the state's caregiver support program a real respite from all the daily tasks ("not just stand in the backyard and cry"). Because caregivers are reluctant to seek help, she advocates a "carebank" system similar to the "timebank" concept. The idea is this: "I do something for you, then I would in turn get an hour of service back, not necessarily from the person I gave it to. I'm not begging and you're not begging. I earned this hour."
"We need alternative ways to get people care," says Yudell, "because we're up against the wall in terms of government services." For example, the Caregiver Support program operated by Salt Lake County Aging Services providing $1,500 worth of housekeeping, home health and other respite services is often not enough (it provides help with a shower only every four or five days, for example) and there's a waiting list of 135, with budget cuts on the way.
So far, Ann Marcusen has done all the caregiving for Lex by herself, although their adult children help out if she gives them a specific task. Her children, she says, are good about giving him "the recreation of talking on the phone," and that gives her a mini-break.
Give us your input
We'd like to invite you to join the conversation. Caregiving is part inspiration, part perspiration. And many of us are making it up as we go along, relying on others for suggestions or warnings of things to avoid.
If you've got suggestions, questions or observations, we hope you'll go online to lifetalk.deseretnews.com, click on aging, and share.