Caregivers share hardships and joys of helping loved ones

Yancey Harris says she has the best job in the world. But as her husband’s caregiver, it’s a job with infinite responsibilities.

“I’m responsible for everything, making it all work,” she said. “It’s totally up to me — everything.”

Yancey cares for her 66-year-old husband, Roy, a veteran who broke his back in an ultralight plane accident more than 10 years ago. He became paralyzed from the waist down and three months after the accident he had a stroke, which took away his speech and the use of his right arm.

“It was devastating,” Yancey said. “We lost two incomes, lost our insurance. We had to buy a car because we didn’t have to have a car where we worked. The bills were outrageous. My biggest challenge in the beginning was how to survive on my own because I had no one to talk to.”

Yancey is one of 50 million Americans providing care for a chronically ill, disabled or aged family member or friend, according to the National Family Caregivers Association. Eighty percent of all caregiving is done by home caregivers, like Yancey. It’s a tough and often endless job full of questions and financial woes — a job that demands everything from an understanding of medications to the emotional fortitude needed to deal with bleak diagnoses.

In Yancey’s case, caring for Roy has gotten easier as they’ve discovered more sources of help, such as respite, a federal program administered by Tooele County Aging Services that provides caregivers with temporary relief from caring for a family member.

“Respite is for whenever I want to go and have fun or do something for me,” Yancey said. “It helps you get away and clear your head and do whatever you want to do, which is really nice.”

A home health aid also comes to help the couple three times a week for two hours a day.

“You just have to ask for help, but it’s so hard for me to ask for help and I usually end up doing it myself,” she said.

The specific challenges caregivers face depend largely on the medical condition of the loved one they’re caring for. Still, Frank Reed, program coordinator for the federally funded Caregiver Support Program with Tooele County Aging and Adult Services, said the most common challenge is trying to find time to take care of themselves.

“The whole purpose of the Caregiver Support Program is to be a resource to the caregiver to hopefully give them some relief so that they don’t become overwhelmed with the responsibility and isolated by having to care for their loved one so intensely,” Reed said. “They just feel so committed to their loved one they have a hard time relinquishing some of those services to someone else, even for a few hours. A lot of the challenge is to visit with them and encourage them to actually take some time for themselves to trust someone else to stay with their loved one.”

For Ellen Mikesell, of Tooele, getting some time for herself is easier said than done.

Ellen’s husband, Arthur, 74, was diagnosed with Parkinson’s disease in 1997, but has other health issues, including osteoporosis and heart disease. Ellen, 72, has health problems of her own, including chronic back pain. Still, caring for her husband is her top priority, she said.

“I do everything,” she said. That includes making sure car repairs get done, cooking, shopping, paying the bills.

When she goes shopping every few weeks, sometimes taking four hours to get everything, she worries about him at home.

“I worry about him the whole time I’m gone,” Ellen said, adding her husband doesn’t like just anybody to come stay with him.

“The only thing I do for myself is go to Homemakers [the Tooele Homemakers group] every month,” she said.

Ellen helps Arthur with everything from bathing to managing medication. A machine, which they qualify for, dispenses his medications, but she has to put 50 doses of various drugs in the machine every 10 days. Arthur takes 40 pills a day, most for his Parkinson’s.

Ellen said getting the medication right was the biggest challenge in the beginning.

“He’s very sensitive to medication,” she said. “Too much of a change literally makes him sick. He’ll stand up and black out. I’m the one that has to regulate all that.”

Ellen said her biggest challenge now is housework. Art helps by emptying and loading the dishwasher and taking out the trash. A granddaughter helps and the Mikesells pay a friend to come over once a week and do chores. They’re also part of an adopt-a-grandparent program, which matched them up with a family who also helps out.

The couple’s children live out of state.

“We get lonely around here. My husband goes into that room and will paint for four or five hours at a time and leaves me alone. My telephone is my outreach — and going to Homemakers once a month.”

Grantsville resident Mary Hansen, 67, said caregivers have to learn to take care of themselves.

“And that’s hard because you get depressed and you get tired,” she added.

About 10 years ago, Mary’s husband Dennis, now 77, was diagnosed with dementia. A few years later, doctors said it was likely he had Alzheimer’s.

“It’s the worst disease I think I’ve ever encountered because you’re watching something that you love die — slowly progressively dying,” said Mary, who was a nurse’s aid and has worked in a hospital, nursing home and mental health hospital.

Amazingly, Mary is the only person Dennis knows and recognizes.

“He doesn’t recognize any of the children but he calls me by name. It amazes me,” she said.

Nonetheless, there are still challenges.

“He doesn’t look sick. He eats three meals day, responds to affection, responds to little children and to animals,” she said. “But he can go from Jekyll to Hyde in a second.”

Mary moved Dennis into a nursing home after a bladder infection and a subsequent possible heart attack resulted in hospitalizations.

“My rope was starting to fray,” she said. “I needed rest.

But after five weeks, she decided she wanted to bring him home and for the last year he’s been on hospice, which provides care to the terminally ill. A woman now also lives with the couple. And Mary has respite help from the Caregiver Support Program through Tooele County Aging.

Now she has a bit of time to herself, though that eases the burden only slightly.

“Even though I might be able to get away for a few hours, or even a day or two, when I’m gone I’m always wondering if something’s going to happen, and I wouldn’t want that person to feel responsible,” she said.

Mary believes it’s very important for those in need of perpetual care to get a diagnosis early and take advantage of all the help available.

In the 10 years since Roy’s accident, Yancey said she and her husband have done well. Though she doesn’t want to downplay the challenges of caregiving, it’s work she wouldn’t trade for anything.

“I’m probably too positive, but it’s easy if your mind’s in the right place,” Yancey said. “I love caring for him. He just lights up when I walk in.”

She said attitude is everything for caregivers.

“My goal is to just see him through this the best I can — and he’s very happy, which is a miracle,” she said.

Caregivers who would like help may contact Frank Reed at 843-4107 or at FReed@co.tooele.ut.us.

Sarah Miley: swest@tooeletranscript.com