Meeting The Challenges of Longdistance Caregiving

Miami Herald
Posted on Wed, Nov. 09, 2005

By Cindy Goodman,cgoodman@herald.com
Two days after Hurricane Wilma, I navigated the debris-filled streets to check on my 98-year-old grandmother in Century Village. I had been unable to reach her by phone. I brought her a cooler with ice, cold drinks, batteries and canned food.
But hundreds of other residents in her power-deprived retirement community did not have relatives nearby. I imagined frantic family members trying unsuccessfully to reach elderly parents by phone and too far away to get them supplies or medical help.
In the past few months, Hurricanes Wilma and Katrina revealed a devastating reality: We cannot always be there to help the ones we love. While these tragedies are extreme, there is a great deal of stress and guilt even in the most mundane aspects of caregiving long distance.
Even more difficult is balancing long-distance caregiving and a career. Yet a growing number of Americans are doing it. A 2004 MetLife study, in association with the National Caregivers Alliance, found 80 percent of long-distance caregivers work full or part time. That’s up from 56 percent in the 1997 study.
Increasingly, the caregivers are men and are less likely to give up their jobs. Men now make up 39 percent of long-distance caregivers.
In the MetLife study, both men and women said they had rearranged their work schedules, taken unpaid leaves or considered changing employers to deal with the challenges of long-distance caregiving.
“Many bosses now have stepped into caregiving roles so they understand what’s involved,” says Susan Strecker Richard, editor in chief of Caring Today magazine.
One of the trickiest aspects of this juggling act is taking time off. Most caregivers quickly use up vacation and sick days. They must plot travel to squeeze in visiting time with taking parents to doctors appointments. And still, emergencies arise.
Richard suggests building goodwill with co-workers so they will pitch in if you suddenly need to leave town.
“A project may have a deadline that doesn’t go away because your mother broke her hip,” Richard says. “You have to make sure there is no resentment.”

Locating resources from a distance also can be daunting. It often requires spending time at work making phone calls, surfing the Internet and e-mailing doctors. But finding a support team where your loved one lives is key to minimizing work disruptions.
About four years ago, Regla Armengol’s 82-year-old mother in Miami grew too confused to take the right doses of her medications. Armengol, an only child who lives in Virginia, put her mother in a small assisted living facility, formed a relationship with the owner and hired Home Instead, a national senior-care company.
In Hurricane Wilma’s aftermath, Armengol says she relied on her support network. She reached the owner on her cellphone, spoke with her mom and was assured that the owner would bring in food and ice.
“The key is the people you have on the ground. You have to trust them at a moment’s notice to do right thing without being told,” Armengol said.
But even with support, the emotional demands sometimes lead to caregiver burnout. Carolyn McIntyre runs support groups for caregivers at large companies like Pfizer.
“Most employed caretakers can’t anticipate how long they will be needed and how much time is involved,” McIntyre says. “When they get to the point that they are angry or resenting their relative, they need to step back and take care of themselves.”
The financial toll can be tough as well. Long-distance caregivers’ average out-of-pocket spending is $392 a month or $4,700 a year. Armengol, who works in fundraising for a healthcare foundation, estimates she spends about $5,000 a year.
Employers, seeking to reduce work/family conflicts, are taking notice. Some large companies are identifying caregiver support services and subsidizing long-term care insurance. Others are offering elder-care fairs, support groups, personal advisors and counselors.
Even caregivers who work for small businesses may be able to find support. Members of some small business associations have access to a toll-free 24-hour help line.
Bathilda Lewis-Hardware, a night-shift nurse at Miami’s Jackson Memorial Hospital, assumed the long-distance caregiver role two months ago. She used all her vacation and sick days this summer when her mother in Birmingham had heart failure. Now, Lewis-Hardware says she hired a home companion, calls her mom twice a day and worries about her all the time.
“I don’t know what elder-care support service Jackson has available,” she says. “But I’m certainly going to check into it.”