For Many Americans, Caregiving a Long-Distance Burden
WEDNESDAY, Aug. 31 -- Caring for a parent or relative in the same zip code can be hard enough, but long-distance caregiving, which is becoming more common in an increasingly mobile society, brings with it added burdens.
By 2012, an estimated 14 million Americans will be long-distance caregivers, so many that some even have new names: "seagulls" and "pigeons."
These terms refer to family members who alight for short periods of time, make a mess for local caregivers and fly out. What they don't take into account are the pain, isolation and hassles that long-distance caregivers are dealing with on their own.
"They have unique issues," said Polly Mazanec, lead author of a paper appearing in a recent issue of Oncology Nursing Forum.
Those include financial concerns, since many people are borrowing from savings to travel at a moment's notice or to arrange child care or pet sitting during their absence, as well as emotional issues such as guilt, worry and anxiety.
"We found that long-distance caregivers were much more anxious than local caregivers, who could see what was happening [on a more frequent basis]," said Mazanec, an assistant professor of nursing at the Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland.
"Long-distance caregivers end up feeling guilty. I deal with it on a daily basis," added Dr. Nasiya Ahmed, an assistant professor of geriatric and palliative medicine at the University of Texas Health Science Center at Houston.
Family caregiving has received a lot of attention recently, but not so much for those who have to do it at a distance.
"Here's this whole group of people out there that no one is helping and they're typically part of the sandwich generation, juggling their own families and careers," said Mazanec, who is also an advance practice oncology nurse at University Hospital's Case Medical Centers Seidman Cancer Center. "It's just a real challenge."
To start finding out what these challenges were, Mazanec and her colleagues interviewed 14 caregivers of parents with advanced cancer. The caregivers lived at least 100 miles from their ailing parents.
"Across the board, folks were pretty consistent in what they were telling us," said Mazanec, who is also an advance practice oncology nurse at University Hospital's Case Medical Center's Seidman Cancer Center, also in Cleveland. "The biggest concerns were that they didn't know what's going on and felt very disconnected. They felt very much out of the loop."
They also weren't sure when was the best time to visit -- at the time of surgery or beginning of chemo -- and when they did arrive were often shocked at the changes they saw in their mom or dad.
The far-away relatives tended to mistrust information they were getting second- or third-hand from siblings or other parents, feeling that these relatives might be trying to protect them.
That's when they started asking questions about what was being done and what more could be done, upsetting their sisters, brothers and other family members who were nearby and had already been over this ground, perhaps several times.
But Mazanec feels that health care providers can do much to ease the distress of these "seagulls" and "pigeons," and thus reduce much of the distress to all parties.
Perhaps most importantly, more avenues of communication need to be opened up, she said.
"With patient permission, there's no reason why we couldn't share information [with the long-distance caregivers]," Mazanec said. "They want to hear from us what is really happening and not to have it watered down. They can certainly seek out the health care team if the health care team hasn't sought them out. Call. Email. Let them know they're out there."
"There's no reason why they can't be active participants in the care," she added.
"Maybe if they can't provide hands-on care, they could contribute by sending meals once a week, to empower them to feel part of the care, to seek out the health care team, to get information about what's going on and to feel a little more connected," Mazanec said.
Social workers can often provide a list of local resources.
Ahmed advises long-distance family members to visit as often as they can and if family and financial obligations prevent that, to have someone -- maybe a neighbor -- check on their parent at least once a week to provide updates.
Although this study looked only at caregivers of cancer patients, Mazanec feels much of the information gleaned here would be useful for caregivers in all kinds of situations.
"Information is power, and knowing what's happening helps people feel [they have] a little more control over something they have little control over," Mazanec said. "Although physical hands-on caregiving is very exhausting, emotional caregiving is actually more distressing than the physical. There are ways to feel less guilty and like you're contributing."
The National Institute on Aging has more on long-distance caregiving.
Posted: August 2011