When caregiver ails, it's a dual crisis

An emergency can devastate couples already coping with sickness.

By SAUNDRA AMRHEIN, Times Staff Writer
Published November 26, 2007

Ginni Voedisch trims her husband Jack's beard at their home in Sun City Center. Jack suffers from diabetes and Alzheimer's disease. Ginni had a spell of vertigo a few years ago and was taken to the hospital, prompting a question: Who would take care of Jack if something should happen to her.
	[Edmund D. Fountain | Times]

SUN CITY CENTER - Ginni Voedisch remembers the ground rising up to meet her face, the stumble to the house, the call to the ambulance.

Through the dizziness and fear of what was wrong with her - was it a stroke? - she felt a pang of panic for her husband, Jack.

"If I'm hospitalized, what's going to happen to him?" she thought as the ambulance pulled away from the house. Jack Voedisch, 76, has diabetes and dementia. He needs insulin and food, and their closest relatives live hundreds of miles away.

Like many spouses in retirement communities, Voedisch is her husband's caregiver. And like many caregivers, she never imagined her health faltering first.

For older caregivers, an emergency can quickly turn into a crisis, says Mike Anderson, chief of the community's volunteer emergency squad.

His ambulances respond to three or four calls a month where caregivers fall or get sick, leaving no one to care for their disabled spouses. The spouses are sometimes bedridden, recovering from strokes or suffering from Alzheimer's disease, but they're not sick enough to be hospitalized.

State elder care officials could take hours to respond while someone tracks down a relative. Assisted living facilities don't always have rooms available on short notice.

"There isn't an immediate answer," Anderson said. "There are no provisions for something temporary. There are no county or state programs to help."

Experts worry that the problem will worsen given the growing number of retiring baby boomers and the tendency for caregivers to collapse from emotional and physical exhaustion.

In a close-knit community like Sun City Center, neighbors usually step in to help. They sit with the bedridden spouse or call relatives.

Often, someone on Anderson's ambulance squad also stays.

Former emergency medical technician Rhoda Brueggeman remembers doing just that. Once, a man with Alzheimer's grew confused and irritable after his wife left in an ambulance.

"I started playing piano and we all started singing," she said. "You do what you have to do."

Voedisch sought a permanent solution after her fall, which resulted from vertigo. Neighbors brought food to her husband that day and kept him company. But she worries about the next time. What happens if she's hospitalized for weeks? She plans to sell the house and move back north.

"It worked out," she said, "but it helped me decide we need to go back to our family."

***

With little help in an emergency, caregivers must plan for the future, starting with their own health, experts say.

"A lot of times caregivers don't take care of themselves," said Katherine Goosney of the West Central Florida Area Agency on Aging. "They are thinking about the loved ones and what they need."

But some seniors often refuse to ask for help.

"It's amazing how many times a caregiver will say, 'Well, I don't want to bother anybody,'" Goosney said. "They are afraid to ask."

Senior caregivers who face the physical or emotional strain of caring for a disabled spouse have a 63 percent greater chance of dying than their peers, according to a 1999 study in the Journal of the American Medical Association.

Marguerite Williams understands why. The Sun City Center woman got worn down caring for her husband, Bruce, who has Alzheimer's disease.

She was depressed, watching him slowly disappear.

"Your whole world, and everything you did together, is just gone," she said.

The exhaustion took its toll. She bathed him and cleaned the bedding, sometimes going for days on just a few hours of sleep. This spring, Williams' children came to visit and were shocked at what they saw.

"Mother, you can't believe how you've changed in the last year," they told her. They persuaded her to use the money she and her husband had set aside for long-term care before something serious happened to either one of them.

This summer, she joined a new local support group for caregivers and put Bruce in an assisted living facility.

"It was getting to me," she said. "I didn't see a way out."

State officials don't track calls they get to step in when a caregiver falls ill, said Kelly Kelley, who heads adult services in Hillsborough County for the state Department of Children and Families.

Caseworkers respond within three hours, she said. They could take several more hours to place the disabled spouse in an assisted living facility if neighbors and family aren't found.

The agency has a list of facilities willing to accept a flat rate of $23.83 a day, but there's no guarantee they'll have beds available in an emergency. That rate is intended for just a night or a few weeks at most and reserved for only very poor couples. The rest pay the going price.

Still, Kelley added, caseworkers eventually find a placement.

"No one's left out in the cold," she said.

Short-term care in an assisted living facility or nursing home is very difficult and expensive, said LuMarie Polivka-West, senior vice president of the Florida Health Care Association, a trade group for nursing homes and assisted living facilities.

Even if beds are available for short-term or respite care, assisted living facilities and nursing homes charge $160 to $300 a day, she said. Medicaid assistance depends on income. Medicare coverage is limited and based on the patient's condition. Nursing homes require medical records and oversight by the patient's doctor.

"You can't just drop someone off," she said.

Home health care can quickly add up, too, averaging about $240 a day for an unskilled worker.

"Respite care is a very needed service," she said.

***

Sue Stephens won't rely on neighbors or the state. Instead, she has tapped a growing, private profession.

After attending a forum last February by the Sun City Center Mental Health Coalition, she hired a geriatric case manager.

Her husband, Jim, suffers from Parkinson's disease, dementia, depression and kidney stones.

"The reason I contacted her, I told my husband, was because I was most concerned with what would happen to him if I were going into the hospital," she said. "To this day, I don't know what would happen if I wound up on the floor. He doesn't really dial the telephone anymore."

The case manager found him a geriatric specialist, who switched him off medication that left him in a fog. The case manager also lined up a neurologist and a social worker.

She helped Stephens set up an emergency plan, under which she will be called immediately to arrange home health care for Jim.

They drew up a list of his medications and family contacts, since the case manager also will take on the sometimes prickly task of dealing with relatives.

If needed, the case manager also prepares long-term care, like an assisted living facility.

"I don't have much of a choice, because it's not like I can have friends do this for me," Stephens said.

The option carries a hefty price: $75 an hour.

"It's not cheap, and a lot of people cannot do what I'm doing," she said. "But I can't afford not to do it."

Saundra Amrhein can be reached at amrhein@sptimes.com or (813) 661-2441.

Fast facts

Tips for caregivers

-Have a backup plan.

-Designate a neighbor or relative to be called in an emergency.

-Keep a "vial of life" - a bottle with information on medical conditions, medications and emergency contacts - in the refrigerator.

-Maintain a support network of friends, such as club or church members. Do not isolate yourself.

-Try to plan financially for long-term care while both spouses are healthy.

More information

Web sites and phone numbers for caregivers:

www.agingflorida.com

-Elder help line of the Area Agency on Aging: toll-free 1-800-963-5337.

-The Sun City Center caregivers support group: Call co-founders Fern Frederick at (813) 634-7911 or Bernice Levine at (813) 633-1886.

[Last modified November 25, 2007, 23:03:28]