Caregivers can be ‘hidden patients’

Tending to ailing loved ones takes emotional toll

By Rachael Scarborough King / The Bulletin
Published: March 31. 2007 5:00AM PST

PRINEVILLE – During the worst period of her husband’s illness in 2005, Peggy Lutz was sometimes unable to leave their house for more than two hours a week.

Lutz, 85, was the primary caregiver for her husband, Bob, who died of vascular dementia in December 2005 after a three-year sickness. She looked after Bob in their home 24 hours a day, with limited outside help, delivering his medications, moving him around the house in a wheelchair and acting as his “mind” as his dementia progressed.

She described caring for her husband full time as a process of “physical, emotional and mental destruction.”

Now, she has written a book about the experience, which she hopes will provide a window into the mind of a caregiver.

“How-to books are not what I needed at that time – I needed somebody to come beside me and say, ‘I know what’s going on in your mind right now,’ and that’s what I’ve done here,” she said.

Medical professionals say that caring for a family member with a serious illness or disability often takes physical, emotional and financial tolls. Both physicians’ and caregivers’ focus is usually on the patient, which can lead people to neglect their own health.

“We find that often the caregivers die before the people they’re caring for, just because of the stress, the isolation and not doing any self care,” said Patrick McCullough, a medical social worker at Pioneer Memorial Hospital who leads a support group for people taking care of dementia patients. “Caregiver burnout is pretty much when you just can’t do it anymore, physically, spiritually and emotionally, at the end.”

Emotional outlets

Lutz, who lives in Prineville and attended McCullough’s support group, said she experienced that burnout. There was one moment in particular that inspired the title for her self-published book, “I’m Too Tired to Cut the Rhubarb: Inside a caregiver’s head as she walks her husband’s final journey with him.”

One day in late July, she went to the window of her house and looked out at her rhubarb patch, which had become wildly overgrown. She said she felt overwhelmed by the thought of going outside to cut the plant.

“There were these huge leaves,” she said. “It was just one of my moments of total exhaustion when I just felt I couldn’t handle another problem. It was such a little thing, but it was so huge to me at the time.”

Her writing began as a way to release her thoughts during the time she was taking care of her husband, Lutz said. After he passed away, she shared the writing with some of the members of her support group, who said they had experienced similar emotions.

Lutz, a former 12th-grade English teacher, has also written and self-published two other books.

“The caregiver finally gets to thinking, ‘Well, whatever happens to me doesn’t matter anyway.’ It’s just an attitude of exhaustion and giving up, but you know you can’t quit, so you just kind of feel trapped,” she said. “That was such a saving thing for me that I could go in for 10 minutes and sit at the keyboard and write or talk at myself.”

After her husband died, Lutz said, she “felt numb.” Eventually, she realized that she had started the grieving process when she began writing her book, since it helped her to work through the emotions she was experiencing.

Peggy Coffman, who lives in Bend and cares for her husband, Ron, said writing has also helped her since his motorcycle accident last July. While he was in the hospital, she began sending out e-mails to friends and family about his condition.

The accident left Ron, 67, paralyzed from the chest down, and Peggy, 65, is now his primary caregiver. She quit her part-time job at her son’s optometry office in order to take care of Ron, a retired police officer.

“It’s a real lifestyle change – here we are retired and everything was going really great for us, (and now) all of our things we had planned on doing we had to cancel,” Peggy Coffman said. “I did have some anger issues, but I try not to let it get to me. I try to think pleasant thoughts and think, ‘This too shall pass.'”

After the accident, Peggy said, she was in charge of changing the drain for her husband’s wounds. She also moves him in and out of bed and helps him turn over during the night.

“It’s really hard to move those heavy legs,” she said. “You wouldn’t think they would be so heavy, but they are.”

Ron Coffman, who had another surgery in November for an ulcer on his back, said, “I don’t know what I’d do without her.”

Both said that they are often kept up late at night because of his pain.

“My heart goes out to her, though, in those situations, because I know she wants to help and there’s nothing I can tell her that will help,” Ron Coffman said. “So she’s frustrated, I’m frustrated.”

Jewel Kaupp, a nurse from St. Charles Medical Center-Bend’s Home Health service, said she is impressed by how well Peggy Coffman has “stepped up to the plate” in her caregiving role.

“It’s their partnership, their spirit, their sense of humor and their ability to problem-solve together,” Kaupp said. “When I look at them, I see one.”

Peggy Coffman has a variety of methods for staying on top of her tasks. For example, she recorded messages on her cell phone’s alarm system that remind her which medicine is needed at what time. She also sets timers, because her husband needs to change position every 15 minutes. But she said she never expected to be in this role.

“I’m not a nursing-type person – that’s not a job that I ever wanted to have,” she said. “But this is one of the things that I have to do, so I do it.”

She also has started cooking dinner again every night, which had been her husband’s arena since he retired.

Peggy and Ron Coffman said they hope he will recover enough to achieve some measure of independence. Ron Coffman said his first goal is to obtain a special driver’s license so he can go out more, and, in the long term, he hopes to walk again.

Peggy Coffman added that she is aware of some of the local support groups for people in her situation, but said she has not attended any.

“Actually I have so much support from my friends and family, I just haven’t felt the need to do anything,” she said.

McCullough at Pioneer Memorial said the support group there, which focuses on those caring for dementia patients, has been very successful. Many caregivers develop a feeling of isolation, he said, and a group can help rebuild relationships.

“It breaks through the isolation piece, and people don’t feel on their own,” he said. “They’ve gained back a social network that they’ve lost over the years of taking care of someone, and that’s the biggest danger.”

The financial burden

Lutz said she and her husband decided before he became sick that they would care for each other if one developed a medical problem.

“We agreed that whichever one of us went down first, the other would stay and care for,” she said. “That was our commitment to each other. It’s so comforting to know that I did everything the way he wanted it, and we agreed to.”

Besides that, she said, a full-time care facility would have cost about $6,000 a month. Part-time help in the home is also expensive, and Lutz said it was difficult to find someone available on an on-call basis.

Peggy Coffman said that her husband, Ron, is a “million-dollar baby” – the cost of his treatment has exceeded $1 million.

The professional caregiver who comes to their home every morning for two hours, at a cost of $20 per hour, is not covered by Medicare, she said. Because Ron already has a motorized wheelchair, Medicare also would not cover the cost of the manual wheelchair he needs in certain situations.

Becky Bryan, the executive director of Hospice of Redmond-Sisters, said it can be difficult to find in-home professional help when a person’s condition becomes severe.

“We have discovered that there are a lot of people that have taken out long-term care insurance and they haven’t read the fine print, and when it comes to needing caregiving in the home or in a facility, they’re not meeting the qualifications,” Bryan said. “It’s a financial burden.”

Phyllis Goss, a supervisor with Home Health at St. Charles, said her service tries to relieve some of the pressure on caregivers. Home Health nurses visited the Coffmans at home three times a week after Ron Coffman first got out of the hospital, and continue to monitor his recovery.

“We try to help it not to be so stressful for (the caregivers), to let them know there are resources,” Goss said. “When a caregiver is first faced with that challenge we’ll come more often and help to educate, and we don’t want to push people to do something that they’re not able to do safely.”

Dr. Michael Knower, medical director of Pioneer Memorial’s Home Health and Hospice Department, said that under Medicare’s hospice benefits the hospital can admit people for a five-day “respite” to give caregivers a break.

“Part of what we do is to keep an eye on the caregiver, make sure that the caregivers are doing OK – if they are not doing OK then we try to intervene and get them back on track,” Knower said. “We try to anticipate problems and step in and say, ‘Wait a minute, if you keep on doing what you’re doing the way you are doing it, you’re going to crash and burn.'”

‘Hidden patients’

Nationwide, there are about 6 million people providing long-term unpaid care for elderly disabled people, according to a recent article in the New England Journal of Medicine. They do everything from bathing patients to taking them to doctors’ appointments, preparing meals and changing diapers.

Knower said that taking care of a loved one can often be very fulfilling, but “it’s extracted at a considerable cost.”

“Often what we see is that it’s not during the period of active care, ’cause you’re running on adrenaline and you’re able to keep yourself going for them one way or another, but typically what we see during the year after the death of the patient is the caregivers’ health suffers,” Knower said. “Caregivers take a huge hit, and that doesn’t even get into the incidence of depression and other similar forms of stress and mental illness that crop up.”

Caregivers are sometimes described as “hidden patients,” because they often focus more on the medical condition of the family member than on their own well-being. A study in the New England Journal of Medicine showed that, in the one-year period following the patient’s death, caregivers have a higher mortality rate than others in their age group.

The majority of caregivers are women, according to an article in the Archives of Internal Medicine, and are caring for either their parents or their spouses. Most of the roughly 15 people in Pioneer Memorial’s support group are children caring for elderly parents, McCullough said.

Susan Lanier, a Redmond resident, fell into that category when she was taking care of her parents, both of whom passed away in January.

“As soon as Dad died she went a week later – a broken heart I think,” Lanier said. “At the beginning I was taking care of Mom, and then Dad went downhill real fast; like in a week he was gone. It was kind of a shock to everyone.”

Now Lanier works for Medicaid as a professional caregiver in other people’s homes.

“I just love people and I love being able to help them out, doing what they need when they need it, and making good friends,” she said.

But she described caring for her parents in their last months as “heart-rending.”

“It was not easy, but I would do it again in a heartbeat because I loved them both so much,” she said. “It just kind of fell into my lap – my sisters and my brothers were all working and I just started going over there and taking care of them anyway … I had the time and I didn’t mind at all.”

Lutz, who is now planning to move from Prineville to McMinnville to be closer to her children, said she hopes that more attention will be paid to the people in the caregiving role.

“More people are really beginning to explore the underbelly of the hard side of caregiving,” she said. “This is not self-pity and it’s not ‘I, me, look at what I’ve done.’ It is the fact that this is a very tiring, stressful, destructive experience.”

Before she became a caregiver, Lutz led an active lifestyle. She racewalked 35 miles a week and participated in the Portland Marathon four times.

“One of the very difficult parts about being a caregiver for me what that I have always been extremely healthy,” she said. “I came into caregiving being so healthy, and that’s why I think I survived as well as I did. However it has taken me 10 months to come back to anywhere near what I would call pain-free normal.”

But she added that she is “in a good place now,” and the act of caring for her husband was ultimately rewarding.

“It’s a growing experience, and I think we all – when we go right to the very end, to the final whistle – we find a depth of ourselves that we hadn’t known before,” she said. “For some people that is very unsettling, but it was not for me. It was very fulfilling.”