Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=110095
Story Retrieval Date: 7/23/2014 7:16:27 PM CST
Alicia Barney & Jessi Prois/Medill
Alicia Barney & Jessi Prois/Medill
“First, you need a good health care team with somebody who understands whatever illness the person you’re caring for has – someone you can call on an ad-hoc basis,” she explained. “Have that team - a nurse, doctor, social worker - and then seek out the support. In this area, there are support groups that deal with a variety of different illnesses. You can exchange information with people dealing with same thing.”'
Kathleen Kelly, executive director of the Family Caregiver Alliance, said simple choices can make a difference in fighting depression, a common condition for caregivers.
“Taking a 10-minute walk around the block will probably lift their mood,” Kelly said of caregivers.
• Take a break from caregiving.
Private care is available, and those who can’t afford it may be eligible for help from the Illinois Department on Aging, Morhardt said.
• Pace yourself.
“Often caring for someone with a chronic illness is a commitment for many years. If you burn yourself out, you’re not going to be any good for the person in the long run,” Kelly said.
Like many baby boomers, Wendy Bartlett just became an empty nester. But her children grew up long ago – it’s her 81-year-old mother who moved out.
After three years of caregiving, Bartlett packed her mother’s belongings into four boxes and sent them to New York.
Her mother, who has Alzheimer’s disease and macular degeneration, is moving in with Bartlett’s sister after Bartlett’s husband suffered a heart attack.
“It became very clear that taking care of my mom the way I needed to and then to take care of my husband" wasn’t possible, said Bartlett, 55. She works at a wedding planning company and directs a non-profit organization in Crown Point, Ind., where she lives.
Still, packing up her mother’s belongings was “one of the hardest things I had to do,” she said. But the move was essential for her husband’s health and her own.
As the population ages, a growing number of baby boomers are finding themselves the primary caregivers for their elderly parents. Unpaid caregivers provide 80 percent of in-home care to the elderly.
While the health problems of the parents are often the focus in caregiving situations, daily demands can take a toll on the caregiver. Between 40 and 70 percent of caregivers show clinically significant symptoms of depression, according to the Family Caregiver Alliance. And about one in 10 caregivers report that their responsibilities have caused their physical health to worsen, according to the Center on Aging Society.
The mental and physical toll may be related. “If you have depression you’re more likely to be at risk of other kinds of conditions,” said Kathleen Kelly, executive director of the Family Caregiver Alliance, headquartered in San Francisco.
“And the constant stress of a caregiving situation, depending on the level of intensity, makes a difference on whether you have a suppressed immune system. You can be at risk of exacerbating chronic conditions you may already have," she said. You may also develop new conditions, depending on whether you can take care of yourself, Kelly added.
Health effects on a caregiver are determined by factors such the age and health of the person cared for, the quality of the relationship between the caregiver and elderly person and the intensity of caregiving needed, Kelly said.
Kelly’s organization, which provides resources and support for family caregivers, regularly sees caregivers who have developed diabetes, heart problems, anemia or other ailments.
Experts agree that the stress and anxiety caused by caring for an aging loved one, the isolation that family caregivers can often face and a lack of attention to their own health are the main culprits that make the caregiver likelier to become ill.
“I always put her first,” Bartlett said of her mother. “If she ate, a lot of times I would forget to eat because I was so busy getting her ready. I didn’t have time. So you skip it. And then you just grab something on the way out the door, whatever it is. You learn to live on caffeine.”
“It degrades you over time,” she said.
A caregiver’s nutrition and exercise routine can often suffer, but caregivers can also fail to see a doctor when they’re sick or need preventative medical assistance.
“The health toll is a the result of not having time to take care of yourself, like not getting a mammogram for example,” said Dr. Linda Railsback, team physician for Hospice of Central Iowa.
Beyond these issues, people who work with family caregivers often cite the pain caused by seeing a parent or other family member change and suffer.
“There is merit and value and humanity in the acts of people taking care of one another, but it doesn’t negate the fact that often it’s a sad situation, and it doesn’t have a nice, neat, tidy, wonderful conclusion,” Kelly said. “As much as you understand on an intellectual level what’s going on, it can break your heart to watch them struggle.”
While many researchers have determined caregiving can have a negative impact on health, a study released last month by University of Michigan researcher Stephanie Brown found that some caregiving can actually prolong life. In a study of adults over 70, researchers found that people who provided at least 14 hours of care a week to their spouses had a 37 percent reduced risk of dying during the study’s seven-year period.
The caregiving motivational system may trigger hormones such as oxytocin, known for its role in female reproduction. The hormone may buffer the stress response and is also associated with cellular repair and cell growth, Brown said.
She acknowledges that previous research has shown that caregiving has a negative impact on health, but points out shortcomings in the findings.
“These studies do not disentangle the stress of loving someone who is dying, from the presumed stress of helping that person,” Brown said. “There is no way to tell from that previous work what the true effect of helping behavior by itself is on physical health.”
Experts agree that despite the challenges it can pose to health, caregiving can have positive emotional impact.
“It isn’t all about stress and burden, it can be an opportunity for people to heal relationships and to be closer as a family and find purpose in life,” said Darby Morhardt, professor and clinical research social worker at Northwestern University’s Feinberg School of Medicine.
One way to develop healthy relationships in a caregiving situation is to seek out support groups, either locally or online.
Support groups are often a popular means of coping with stress and isolation. They provide caregivers an opportunity to talk about their feelings without judgment, said David Doudt, a hospital and hospice chaplain who leads a support group for children of aging parents at Provena St. Joseph Hospital in Elgin.
“They know these people and know they can say what they need to say without being criticized and without people thinking they’re going off the deep end,” Doudt said.
Most of the people in his six to eight member group don’t come seeking spiritual guidance. They come for a safe place to work out their thoughts, he explained.
“I find that people, when they can talk about their situation, they’ll come to their own solutions – they just need to talk through it,” he said.
In many caregiving situations, even if solutions are found, there comes a point when the family may decide to move the elderly person, either to another family member’s home, or to a nursing home or hospice care.
“Emotionally [caregivers] will struggle until they break, probably, but it’s when the parent has a fall or stroke or something that says they can’t take care of them at home any longer,” Doudt explained.
The move can create differing responses for the caregiver.
“Most patients experience it as a release—once the decision is made, it’s a release,” said Railsback. “Someone in a hospice situation, where you know your loved one is safe and comfortable without having to keep eye on the person every minute is very comforting.”
However, depression and anxiety symptoms can continue or worsen after the caregiving situation has changed.
“She’s still my mom, even though she’s not so much my mom right now,” Bartlett said. “Then I feel guilty I couldn’t do enough. I even was like ‘Oh my God, I have my life back.’ But then you feel guilty for having your life back, at the peril of your mother.”