Fighting caregiver burnout

DULUTH, Minn.—When Candice Richards moved her mother here from southern Michigan, it created a new set of challenges for the Duluth woman.

Although her mom, who has Alzheimer’s, is deteriorating mentally, “she’s very physically able and very hyper—never sits down or takes naps,” Richards said. “She’s always looking for something to do, and at home it would wear me out.”

Richards, who had lived alone and—at the time—had no siblings in the area, found she had to stay up until midnight, so she could get tasks done after her mom went to bed. She’d get up at 6 a.m. to shower and read the paper before her mom awoke.

“So my nights were shorter and shorter, and I ended up getting sick,” Richards said. “And that was a wake-up call.”

As the population ages, more of us are facing the challenge of caring for loved ones who no longer can care for themselves. In Minnesota, an estimated 89,000 people suffer from Alzheimer’s, said Jenna Herbig, program manager in the Duluth office of the Alzheimer’s Association. Although a variety of institutions offer around-the-clock care, the majority of care takes place at home.

The work of family caregivers accounts for 92 percent of the long-term care provided to older adults in Minnesota, according to the MN Leadership Council on Aging. More than 600,000 family caregivers provide $7.1 billion worth of assistance—nearly three times as much as Medicaid spends on long-term care in the state.

“On a bipartisan level, everybody realizes that if you can keep folks at home it’s better all the way around,” said Peg Kirsch Lee, supervisor of the senior companion and caregiver respite programs of Lutheran Social Service in Duluth.

The cost of caring

But providing the care takes a toll—mental, physical, emotional, social, spiritual—on those providing it, experts in the field say.

“The risk is to the health of the caregivers themselves,” said Kristine Dwyer, who has worked as caregiver consultant for Carlton County for 10 years.

“Some of those risks are sleep deprivation, poor eating and exercise habits, failure to stay in bed when they are ill. It’s pretty tough because you’ve got to keep going. They often postpone their own medical appointments. … The caregiver dies before the care receiver. I’ve seen it happen several times. Early death is not uncommon for the caregiver.”

What compounds the risk is that caregivers often are slow to seek help for themselves, said Linda Kolocek, respite coordinator at Virginia, Minn.-based Range Respite.

“Most family caregivers think: Well, I’m his mom or I’m her husband. I’m their daughter. Of course, I’m caring for them,” Kolocek said. “They often do not reach out for help until they have reached the point of crisis.”

Adult day services

Richards found relief in the form of Adult Day Services at the Benedictine Health Center, which is adjacent to the College of St. Scholastica and the St. Scholastica Monastery. The program offers snacks, a healthy lunch, personal care, structured exercise, opportunities for worship and “tons of activities,” said Sarah Dvergsten, who manages it.

On a recent Tuesday, Richards, Paul Frost and Sally Zelen talked about the program in Dvergsten’s office as their mother, wife and husband, respectively, participated in activities on the main room.

It not only benefits them, it gives their loved ones a lift, all three said.

“They enjoy it,” Frost said. “They get things to do here that we don’t do at home. My wife likes to sing. She’s always singing here. … She knows all the words to the 1940s songs, but she doesn’t know who I am.”

Zelen, whose husband was diagnosed with Alzheimer’s seven years ago at age 61, had just started bringing him to the program about a month earlier. She already had seen the effect.

“The first opportunity here was sitting in the lunch group, and Bill was with the guys,” she said. “He was so happy, so taken by the … interaction. And that continues through the day.”

Richards was hesitant at first, she said, because she wasn’t sure her mother’s hard-working past as a manager of retail stores would be a good fit with “a bunch of old ladies who all they ever did was knit and cook cookies.”

But her mom found a purpose in the group, Richards said.

“She considers it her work, and that’s how we got her here in the first place,” she said, explaining she told her mother, “There are a bunch of people here who don’t have anyone to talk to, and they need someone like you.”

The program has existed since at least 1988 and is licensed for up to 25 people, Dvergsten said. On average, just under 22 come per day. It’s staffed by four people with two more on call. There’s little turnover in the staff—a couple of them have worked there for 25 years or more, she said.

The program is currently available weekdays, and plans are in the works to be open for six hours on Saturdays, she said.

It can’t come soon enough for some caregivers.

“She wants to be here,” Richards said. “So the weekends are an issue for us, and they’ve been really long sometimes.”

‘We’re on the edge’

The daily rate is $45 for up to five hours and $63 for anything beyond that, Dvergsten said.

For many, financial help is available. Richards said she started with a visit from a county public health nurse for a long-term-care assessment. Her mother qualified for a waiver program on a sliding scale.

That costs the government less than having her in a nursing home, Richards said.

For some caregivers, the program may make the difference between being able to keep their loved one at home and having to turn to a nursing facility.

“We’re on the edge,” Zelen said. “We would be on the edge.”

But as it is, she and her husband still can share some of their favorite activities, such as snowshoeing and biking in the snow, she said.

Frost, whose wife was diagnosed with Alzheimer’s nine years ago, lives at home with his wife and daughter, who joined them about a year ago, he said. Arrangements have been made for his wife to spend 11 days in March at the adjacent Marywood assisted-living center while he and his daughter enjoy a cruise.

“One of the biggest problems we have as caregivers is that we have a seven-day-a-week duty,” Frost said. “And we need to get away.”

The Benedictine Health Center has been one of the region’s best resources for caregivers for years, Dwyer said. They can know their loved one is in good hands “while I can have that time to rejuvenate myself, and I can go to my own appointments and I can attend my social groups,” she said. “I can’t say enough about it. That program is amazing.”


Other programs

Several other programs in the Northland are designed to give caregivers a break. Among them:

— Lutheran Social Service has a group of 10 volunteers who can give a caregiver a respite one day a week, Lee said. The cost is assessed on a sliding-fee scale based on ability to pay, she said, and averages about $6 an hour. LSS also offers a “morning out” from 10 a.m. to 2 p.m. on Tuesdays at the Lincoln Park Community Center (attached to Midtowne Manor). As at the Benedictine Health Center, it provides a hot lunch and activities for the care recipients and frees up the caregivers. “They can have lunch with a friend or get in a round of golf or have their hair done,” Lee said.

— The Alzheimer’s Association offers four caregiver support groups in the Duluth area and about 14 or 15 in Northeastern Minnesota, Herbig said. Caregivers need that interaction, she said. “This can be a very isolating disease, at times, for caregivers.”

— Range Respite has 11 part-time respite aides who provide relief to 150-200 family caregivers, Kolocek said. She was one of the founding board members of Range Respite, which was organized in 1993, originally to serve parents of children with special needs. But it has morphed into primarily focusing on older adults, she said. Range Respite also offers caregiver support groups in Aurora, Virginia, Chisholm and Hibbing, Minn.

— Carlton County Daybreak, from 11 a.m. to 3 p.m. on Thursdays at Evergreen Knoll in Cloquet, offers socialization, activities, coffee and snacks for senior citizens with memory loss and a respite for their caregivers, Dwyer said.

Such programs can result in keeping people in their homes longer, preserving marriage and family bonds, Lee said.

“People who are still together—it’s really a lovely thing to see,” she said. “There’s so much care there flowing from the caregiver to the care receiver. But eventually, they just get so tired.”

As the conversation in Dvergsten’s office continued, Zelen talked about one of those lovely moments with her husband.

Their grandson, a ninth-grader, was working on a research paper for school on Alzheimer’s and music. Both of the Zelens had loved Elvis Presley, she said, so their grandson found an Elvis song to play for them.

“Then we started dancing. It was beautiful,” she said.

“It is a wonderful gift to just live in the moment with him.”