Scheduling and driving to countless doctor’s visits and chemotherapy sessions, picking up prescriptions, handling mountains of insurance forms, vigilantly watching her spouse’s nutrition and stamina—Lanie Tankard wasn’t expecting her 32-year-old marriage to come to this.
But there was never a question in her mind about caring for her husband, who has advanced lung cancer. How do you live with a family member suffering from cancer, Alzheimer’s disease or other chronic illnesses?
Lanie and Jim Tankard wait to see the doctor. Lanie drives her husband to all his doctor’s appointments and takes notes during the visits.
One possibility is to join the other 22.3 million households in the country facing similar challenges and become a family caregiver.
Tankard learned quickly that as a caregiver, she also needed to attend to herself—that in order to manage all the details of her husband’s illness it was vital to take personal time to maintain stamina and prevent resentment.
She decided to participate in a new University of Texas at Austin School of Nursing research study to address the needs of family caregivers. The study is unique because it is geared toward helping the caregiver alleviate the problem of chronic sleep loss.
The nationally funded three-year study began in 2003, and Tankard was one of the first to enroll.
“I always think of the analogy of flying on an airplane with small children,” she said. “The flight attendant reminds you, in the event of loss of cabin pressure, to put the oxygen mask on yourself first and then on your children.
“If you pass out, you’ll be of no help to them. Likewise, I believe if the caregiver burns out, the toll on healthcare, as well as your loved one, is doubled.”
Her husband, Jim, a recently retired professor of journalism at the university, was diagnosed in 2001. Tankard, a freelance editor and writer, also was caregiver to her late mother, who had Alzheimer’s for 10 years.
“And if you count raising three children, I did that as well,” she said.
Dr. Patricia Carter’s study is the first of its kind to focus specifically on using behavioral techniques to improve sleep quality in caregivers.
The sacrifices of caregivers can create long-term problems if they fail to take care of themselves, said Dr. Patricia Carter, the nursing faculty member who received nearly $600,000 from the National Institutes of Health for the study. As a result of the demanding care they provide, family caregivers often suffer from insomnia, depression and poor quality of life.
Caregivers are particularly at a loss when it comes to sleep aids, said Carter. The caregiver can’t use sleep medications because they work so well that monitoring the patient during the night is not possible.
“Caregivers know they can’t make the cancer go away, but have told us, ‘If I can just get a good night’s sleep, I will have the energy to do what I want to do—care for my family member,’” Carter said.
Caregivers, she added, want to continue to provide care. However, in the face of chronic insomnia, they are often left with few options but to turn the care of their loved one over to another.
“If they become exhausted and depressed, they run the risk of becoming patients themselves, which can result in the institutionalization of their family member,” said Carter.
Over the next decade, more than 50 million baby boomers in North America are or will be facing the role of caregiver to a parent, relative or elderly friends—an odyssey that is life-changing. At the same time, thousands of seniors face the difficulty of caring for a chronically ill spouse.
The university Employee Assistance Program realizes this phenomenon and has periodically offered a caregiver support group, which is led by a School of Social Work master’s degree intern. Members of the support group meet once a week at lunch to focus on various topics, including stress, the balance of work and caregiving, grief and loss, communication and the importance of self-care. The most recent session ended this month.
Devastating illness can strike at any time. Lanie Tankard is 57 years old and Jim Tankard is 63.
A caregiver needs to take the time for self-renewal. Lanie Tankard writes in her journal every day.
Questions of care and self-care may seem obvious, but “when we find ourselves under stress, our gut instincts often go out the window,” said Lanie Tankard. “We forget to do what we know is beneficial for us because we are so concerned about what is happening to a loved one.
“It becomes more difficult to see the big picture and put things into perspective when suddenly there are so many details to keep track of,” she said.
She felt that it wasn’t so much things she was doing that were affecting her sleep but rather things she was NOT doing that had an impact.
“When a caregiver gets so busy with the details of someone else’s care, it’s easy to say, ‘Oh, I really don’t have the time to exercise today’ or ‘Gosh, I don’t have time to meditate.’”
Cancer, she said, is like a speeding train.
“You didn’t know you were going to get on it,” she said, “but suddenly you find yourself there. You want to get off and take a break, but your loved one needs another scan or change of chemotherapy or radiation.
“Maybe you need to go to Dallas for treatment. If you travel, you need to make arrangements for ‘takeout chemo’ on the road. In the beginning, your strength as a caregiver knows no bounds, but it begins to wear thin the longer you’re on the train.”
Tankard said a caregiver needs to remember “the long haul, the rationing of energy so there will always be some there.
Participants in the study wear an actigraph to show sleep quality. The small lightweight instrument, worn on the wrist, waist or ankle, also gives a daily activity profile.
“A good night’s sleep goes a long way toward giving you the strength you need.”
Jim Tankard says he quickly learned the value of a good caregiver.
“Lanie drives me almost everywhere I go, takes notes during meetings with doctors and provides many other forms of support,” he said. “I don’t know how I would get along without her.”
In the study, university researchers provide caregivers with the information and skills to take control of their sleep quality. To get a complete picture of caregiver sleep, participants wear an actigraph to show sleep quality. The small lightweight instrument, worn on the wrist, waist or ankle, also gives a daily activity profile. This information helps caregivers know what kind of activities during the day affect their abilities to sleep at night.
Researchers provide sleep goals for the caregivers by setting a daily routine in activities or exercise, decreasing stimulants and practicing meditation and relaxing activities. Caregivers also are taught about good back care and lifting techniques because many of their activities can put them at risk for back injuries.
“Persons who are providing care to a family member with a chronic illness experience prolonged exposure to stress,” said Carter. “Poor sleep can add to the stress experienced, while good sleep can lessen the severity of the perceived stress.”
Jim and Mary Alice Davis had just begun to plan their retirement years when she was diagnosed with cancer. He became her primary caregiver.
Preliminary findings from the study have shown that the caregivers’ sleep quality and quality of life scores improved significantly. Depression scores also improved.
Carter’s research is the first of its kind to focus specifically on using behavioral techniques to improve sleep quality in family caregivers of persons with cancer. She since has expanded the research to include a pilot study of caregivers of persons with dementia or Alzheimer’s disease, and another for caregivers who have lost their loved ones and are in need of help in the bereavement process.
Jim Davis, who last year lost his wife, Mary Alice, to ovarian cancer, was a participant in the caregiver study and has now joined the bereavement group. Mary Alice Davis was 59 years old and an editorial columnist for the Austin American-Statesman. She and Jim had been planning their retirement years when she was diagnosed.
“Cancer was obviously not what we had planned,” said Jim Davis, who also worked as a journalist. He and Mary Alice met as students working for the Daily Texan in the 1960s.
When Davis joined the university nursing caregiver study, he met extensively with Cherie Simpson, one of Carter’s graduate research assistants. She worked with Davis on a sleep intervention that was customized to meet his needs.
“We go through a process that helps caregivers identify areas that could be disturbing their sleep or making sleep difficult and create strategies for them that are helpful and realistic,” said Simpson, who will begin work on her Ph.D. after she receives her master’s degree in nursing this spring.
“We set goals that are reasonable—too much change in an otherwise crazy life would be too overwhelming.”
Breathing exercises, turning the clock to the wall and relaxation techniques were all part of his sleep plan, said Jim, who did all the cooking, housecleaning and other duties while his wife was ill.
“We agreed that Mary Alice should save her energy for the chemotherapy,” he said, adding that it was especially nice to have someone like Simpson come to their home and take such a compassionate interest in their situation.
Genie Doyle, wearing one of her favorite dresses, was a member of the Red Hat Purple Dress Society.
Simpson points out that statistics for what informal or family caregivers contribute to the overall health care system are immense and equate to $196 billion in services if those services were paid for outside the family.
Sabrina Mikan works as a registered nurse at Hospice Austin’s Christopher House. She became one of Carter’s research assistants in 2003 and is working toward a master’s degree in holistic health. In meeting patients with terminal illnesses, she also sees the family members—some of whom are caregivers.
“It’s important to help the caregivers because they are supporting and caring for their relatives and often do not receive support from others,” Mikan said. “Participants in the study are grateful because it allows them to think about their issues and concerns.”
One of the participants with whom Mikan worked was 56-year-old Marc Doyle, who lost his mother to cancer last summer. Doyle, a computer technology teacher at Porter Middle School, had moved his mother from New Mexico when she became ill.
He can testify that caring for someone can be overwhelming, physically demanding and emotionally draining.
“Caring for mom took a tremendous toll on my time and health,” said Doyle, who has diabetes. Solutions seemed out of reach until he joined the study. The journal or log he kept was what really helped him “because it made me pay attention to what I was doing.”
“Family caregivers often sacrifice their own needs and sleep is frequently the first to go,” Carter said. “However, sleep is a basic biologic need of all people and without adequate quality sleep, the body and mind suffer.
“Ultimately, caregivers who sleep better are able to provide care longer and with greater overall satisfaction than caregivers who suffer from chronic sleep loss.”
Office of Public Affairs/School of Nursing
Photos: Sherre Paris