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Need for respite care in valley

by Linda Hiller

Imagine caring for a loved one requiring constant attention all day, every day, with no break.

It could be a young child with special medical needs, an older child with a chronic genetic condition, an elderly parent who’s had a stroke, a spouse with Alzheimer’s – in any of these cases, being a constant care giver takes a toll.

But if these care givers can get a break every now and then – a respite – it can mean the difference between institutionalizing a loved one and keeping him or her at home. It can make the difference between couples staying together and breaking up. Respite can also mean sanity vs. burnout. Getting respite doesn’t mean you don’t love your “patient,” it means you need a breather from time to time.

The Nevada Respite Coalition and the Developmental Disabilities Council have teamed up to find a statewide solution to this predicament that many Nevada residents find themselves in. Wednesday, Stan Dowdy of the NRC and Ken Vogel of the DDC met with several Carson Valley care givers and representatives of local agencies to try and find out what the need for respite care is in the Carson Valley and outlying areas.

“I get calls from Gardnerville and Minden almost on a daily basis,” Dowdy said. “I think there’s a definite need here.”

Respite is defined as “an interval of temporary relief or rest, as from pain, work, duty, etc.” For most care givers, respite simply means a world of relief, Dowdy said.

The divorce rate for parents of a special needs child is higher than 80 percent. This kind of intense care can strip a family of energy as well as financial resources. With respite, however, statistics show that families can stay together and endure their challenges as a team.

Currently, only three other states have a statewide program for respite – Oregon, Nebraska and Wisconsin, and Oklahoma is working on one, Dowdy said.

– Two for the road. Sometimes “for better and for worse” can mean more of the latter in the later years of a marriage. Topaz Ranch Estates residents Marty and Margaret Moosberg, both 70, have been married for 40 years. They have lived in the area since 1979.

In March 1998, Margaret started to exhibit some Alzheimer’s-like symptoms, and Marty has been caring for his wife since then.

“It’s hard to find respite care out here in TRE, but we definitely need some help,” he said. “I have been caring for my wife for a year and a half and it can be hard.

Like many care givers, Moosberg is trying to avoid putting his wife in a nursing home. Most people would rather keep their families together. Although his affection for his wife is apparent, he says he often feels burned out.

“Sometimes, I wake up in the middle of the night and just cry, I feel so bad for her,” he said. “I do want to talk to someone about it, but I can’t talk to her, really. I’d like to see a hotline so we could at least call in and talk or get information.”

“I’ve watched my mother-in-law go downhill and it scares me,” said Jerie Perkins who lives in Carson Valley. “I, too, feel like it would be nice to talk to someone in a similar position and just share.”

n Someone who helps. Linda Ward, 50, of TRE, said she already cares, on a casual, neighborly basis, for many of her elderly neighbors. She came to Wednesday’s meeting at Summerville at Virginia Creek to find out how to do it better.

“I see a need in our community because we’re kind of isolated out there,” she said. “I’ve volunteered my time to help my neighbors through the VFW Ladies Auxiliary. I’ve driven them, checked on them and offered to make a meal. I want to be more proficient and professional in caring for them – better prepared for emergencies. I want to see the respite program work. I do it because neighbors should help neighbors. And, we never know when we may be in their position. It can happen to anyone.”

Vogel said the NRC and DDC held a “respite awareness day” at the last Nevada Legislature session and said the agencies plan to do more at the next session in 2001. Gathering information statewide will be the foundation of that effort, he said.

n Best case scenario. Dowdy asked those in attendance to come up with a dream list of what they’d like to see in a statewide respite program. Among the dream items were:

n An affordable drop in center.

n An adult day care center.

n A 24-hour respite home.

n A Web site and/or newsletter.

n In-home providers.

n A hotline. Many people just need someone to talk to and feel that they’re not alone.

n What are the barriers? After setting up their list, participants were asked to identify the barriers to reaching this dream condition. Among those factors were:

n Money.

n Trust. Can you trust someone else to care for your loved one properly?

n Lack of trained providers, especially for the medically fragile.

n Getting people (volunteers, agencies) involved.

n Transportation, particularly in rural areas.

n Education about what respite is and isn’t.

n Siblings. Many times, parents of special needs children need respite from their other children too. Having someone take all the kids provides them with a true respite.

n Getting the care giver to admit they need help. This, everyone agreed, can be a surprisingly tough barrier because care givers are often so ensconced in their day-to-day tasks that they haven’t the time to stop and reflect.

n Volunteer training and other help. Dowdy said she would be willing to come to the Carson Valley anytime and train potential respite workers.

Martie Graham-Jones, family case manager for the Family Support Council said she felt sure the training class could be offered at the Gardnerville facility.

“If you plan to teach it, we’d be happy to host it so people can learn more about how to become trained respite care volunteers,” she said.

Through Project Assist, state residents can inquire about available care providers in any community, Dowdy said. The number is (775) 688-2284.

The DDC has received a $100,000 grant for respite care, Vogel said, to be used for otherwise ineligible families. For more information, call him at (775) 687-4452.

After holding fact-finding meetings in communities throughout Nevada, Dowdy and Vogel plan to compile their findings and present the information to the 2001 Legislature.

“One of the things we know is, it costs $8,640 per year to provide respite to a family and it costs an average of $91,800 per year to have a person institutionalized.

To receive a survey, call Dowdy at (775) 688-2284.