Thrust into caregiver role

When Hurricane Katrina devastated the Gulf Coast, the upheaval of having to evacuate hit the elderly and those with disabilities especially hard.

Now, relatives who help take care of these most vulnerable evacuees -- aging parents with Alzheimer's, kids with autism, frail grandparents with multiple health problems who are trying to remain in their own homes as long as possible -- are scrambling to find new homes and services for loved ones.

Families nationwide are struggling to get up to speed with new caregiving responsibilities that often can be more involved than they imagined.

"Being thrust into the role of caregiver without any preparation is difficult under any circumstances," says Carol Levine, director of the families and health care project with the United Hospital Fund, a New York-based foundation that does health services research and philanthropy. "But when you are on unfamiliar ground, as in a disaster, the lack of coordination and information is magnified a thousandfold. Even experienced caregivers will face huge challenges in trying to find replacement services -- many won't even exist -- and at the same time deal with their own confusion and anxiety.

"Caregiving is living with ordinary emergencies every day," she says.

The Alzheimer's Association is hearing from people across the country who, having met immediate needs for food and shelter, are now coping with the daily demands of caregiving, says the organization's Kathleen O'Brien.

The complications involved in caring for someone with Alzheimer's "are probably just going to begin to surface over the next few weeks," O'Brien says. "We have situations where all of a sudden families are becoming first-time, 24-hour caregivers."

That's what happened to Morie Pierce, a single mom in Golden, Colo.

When Katrina hit, her frail and nearly blind 88-year-old grandmother had to temporarily evacuate her longtime home in Slidell, La., where she had full-time help. The grandmother moved to Colorado to join Pierce's busy household, which includes three children, a 104-pound, elderly Siberian husky, a cat, a lizard, hermit crabs, frogs and fish.

As the associate state communications director for AARP Colorado, Pierce deals daily with issues of older people and caregivers. But becoming one gave her a new perspective.

"It's very different to go from a situation of being in an elderly person's home where they have everything they need ... to having that person in your home with a myriad of health needs and all of a sudden you're the novice caregiver," Pierce says.

"It has been on-the-job training."

For instance, she learned the usefulness of shower chairs after her grandmother, Lucille Pierce, got stuck in the bathtub. She learned about elevated toilet seats, and she learned how to play down stressful surprises, such as the time her 7-year-old son found a snake on the road and brought it home.

"I almost had a nervous breakdown," Pierce says. "I'm trying to be calm so she won't see that my son just brought a bull snake into the house. It's like 'Somebody get me a glass of wine now. My head's exploding.'"

But, she adds, "They're great memories that we're all going to have. Those are the ones hopefully everyone will walk away with."

Her grandmother's home was not damaged and after three weeks with Pierce's family, she is now headed back to Slidell, where she has extensive help from paid caregivers.

Paid caregivers also have stepped in to help clients, taking the place of family. LeeAnn Canfield, a paid caregiver, works for Home Instead Senior Care in Slidell. She knew when the storm hit that she had to save her client, Sibyl Merigoni of Slidell, who has Alzheimer's disease. While her own house filled with four feet of water, Canfield, 58, who is single and has a grown son, went to Merigoni's home and "told her we were going on vacation," she says.

"When we drove out first thing in the morning and saw all the houses that were boarded up, she said 'Oh, they're all on vacation, too,'" Canfield says.

They stayed briefly with the sister of Canfield's boss in Georgia and recently returned to Slidell. Canfield's home is ruined; she's now living with Merigoni.

Not all families were displaced, but other difficulties also abound.

Rose French, of Irvington, Ala., has a son, 15, with a rare intestinal disease that causes severe abdominal pain and incontinence; he needs to bathe several times a day, and French, 47, needs to wash his clothing just as often.

When she lost her part-time job in Biloxi, Miss., her church paid her electric bill so her power wouldn't get turned off. She also received $900 from the Red Cross. But without a job, she's not sure what she will do next.

"The hurricane did not cause the distress that I as a caregiver already have to go through. It just intensified it."

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