Caregiving from far off isn't easy
By Susan Felt
Gannett News Service
Tim Carr tried to persuade his 80-year-old father to leave New Orleans two days before Hurricane Katrina was to hit the Gulf Coast city.
"He's a stubborn Cajun," said Carr, 54, of Arizona, who wasn't surprised that his father refused to budge from his home. The home sits a few houses from the west bank of the Mississippi River, across from the Louis Armstrong New Orleans International Airport.
Carr is one of 7 million Americans on the other end of a telephone doling out advice and support, and trying to marshal care and assistance for an aging, usually ailing parent or relative, often thousands of miles away.
People such as Carr are called long-distance caregivers, and they're a growing segment of an even larger army of Americans — 44.4 million — who are caring for aging parents and relatives.
For many, Hurricane Katrina drove home not just the gaping holes in the government's disaster plan, but in their families' as well.
In Carr's case, it meant not only failing to persuade an aging father to leave his home — eventually a nephew cajoled the man into evacuating — but also enduring days of not being able to contact his father or nephew on a cell phone.
Still, Carr is one of the more fortunate long-distance caregivers.
His father, albeit living in an area pummeled by a hurricane, is in reasonably good health, financially stable and has a devoted nephew who lives a few houses away. Carr's brother also is nearby.
Disasters that can disrupt the lives of aging parents and their adult children don't have to be Category 4 hurricanes, says Joanetta Bolden, marketing outreach specialist for the U.S. Administration on Aging Eldercare Locator service.
The disaster can be frayed wiring or a loose stairway rail, she says.
For Shawne Malloy and her 93-year-old father, bladder infections, tooth decay, rage and a broken hip demanded hours of phone calls and faxes.
"You have to call and call and call. It's just hard because you just don't know what's going on," says Malloy, 58, who monitored her father's care in a Tempe, Ariz., nursing home from her home in Hawai'i.
Bolden says one of the first things families need is a plan for staying in touch in a crisis, whether you live around the corner from each other or thousands of miles away.
If a disaster struck, how would you know Mom or Dad are OK?
Among Bolden's suggestions is to have a family meeting to create a plan that not only includes a list of a parent's medical needs and prescriptions but identifies nearby contacts to call for information and assistance.
Make sure those contacts have a list of designated family members and their phone numbers.
"You don't need all the neighbors' numbers, but you need some, and they need yours, too," Bolden says.
Resources, especially in rural communities, can be slim, says Bonnie Lawrence, communications manager for the Family Caregiver Alliance, a national organization that provides information and resources for caregivers.
Lawrence underscores the need for a team that can be the eyes, ears and hands for the long-distance caregiver.
"If you're far away, you need someone close at hand to check on their welfare, like a friend, relative or neighbor or someone you hire who could get your mother out of the house" if there were a disaster, Lawrence says.
She also suggests a family meeting to help come up with a plan and identify a sibling, close friend or neighbor who can be the contact person.
For Carr, that person has been his nephew, whose family regularly goes to his father's home for gumbo.
Malloy assembled a team that included hospice social workers and nurses, a body energy therapist and a geriatric case manager covered by her father's insurance.
But caregivers, close or far away, walk a fine line between dictating and suggesting, experts say.
"First of all, talk to your parents," Bolden says. "You can't tell them what to do. They're not going to do it anyway."
Having that initial conversation can be difficult.
Any plan should include directives that include a living will and medical power of attorney. These tools allow a designated caregiver to control treatment if the person is incapacitated and unable to make decisions or communicate.