Jean Danik of Sarver has more than a full-time job.

Danik quit her job as a medical assistant in Natrona Heights two years ago when her father, Eugene Negley, was diagnosed with Alzheimer's disease.

Negley, now 92, and his 87-year-old wife, Josephine, live in a portion of Danik's home that has been converted into an apartment, making it easier for Danik to help her mother provide the full-time care her father has come to require.

Danik said that as well as suffering from Alzheimer's, a condition that has led her father to spend all of his time between bed and wheelchair, he also is hard of hearing. His eyesight has also deteriorated due to glaucoma.

When Danik is not physically in the apartment her parents occupy, she listens for signs that help is needed with a baby monitor from her own portion of the house.

Despite the constant nature of her new occupation, it didn't occur to Danik or her mother until recently to seek relief from caregivers outside the family.

"At first we were reluctant," she said of leaving her father with someone else. "People would offer - and you know you need to get out, but you think 'It's my responsibility.'"

Every day, people like Danik spend their hours caring for loved ones - often to the point of compromising their own health. The problem then becomes one of who will care for the caregiver?

Grove City resident Angela West raised that question last summer, then set out to find the answer.

Community members came forward when West offered a training course for respite volunteers - people who provide relief for full-time caregivers.

What West didn't anticipate, however, was the reluctance of caregivers to seek out the service.

"We noticed there were people in our churches that needed a break," said West, the parish nurse at Church of the Beloved Disciple in Grove City.

"They were caregivers. They had a family member that needed 24-hour care.

"One particular pair had approached our social minister to see if somebody could just come, sit for a couple of hours.

"We hunted initially by word of mouth to try and find somebody. That worked nicely and kind of sparked (the idea) in my mind: 'I know that person isn't alone.'"

After a talk with Ruth Leo, the parish nurse at nearby East Main Presbyterian Church, the pair decided to offer the training course, which they advertised primarily in church bulletins.

Thirteen

people completed the course, which included two sessions that lasted two to 2½ hours.

The sessions defined the role of respite providers and discussed issues such as the physical changes that occur with aging and how those changes affect the caregiver's role.

"For example, as people age their bones and joints are more fragile, their muscles aren't as strong," said West. "So we would need to think about whether the room was safe, free of hazard.

"We made suggestions on things to do, like reading - reading from the Bible or local paper, praying, talking, watching TV, going for a walk or being pushed in a wheelchair. ... We had a speaker talk about dementia and behaviors related to dementia."

West said potential volunteers are not always sure what their role should be.

"They're not a nurse," West said, explaining respite work is social more than medical. "Sometimes just as a friendly visitor, to keep people from being lonely - socially isolated - you've just done one of the most wonderful things you can do. The biggest stumbling block is the caregiver's willingness to accept respite care

."

West noticed, however, caregivers were unwilling to leave their charges and can sometimes be sicker than the one being taken care of.

"I'm sure we have lots of people that need it; we don't have a lot who have come forward and are willing to accept it at this time. So, not all of the volunteers) have been able to get out and be with other people," she said of those who attended the training.

Though members of the group are from various churches in the community, West said none expressed a preference to help those from their own denomination or parish.

"What I have found, not only in my own family, is it's so hard to give up and leave the house because no one can do it as good as you, and there's a little bit of fear on the family member's part to leave that situation.

"Probably more typical than we think, usually the caregiver very quietly endures this burden. They don't want to let people in; it's a sensitive situation. We feel it's a duty to care for our loved one, maybe we feel a little guilty to walk away and let somebody else do it for a couple of hours.

"But at the same time, I have found as a nurse practitioner the (most ill) one sometimes appears to be the healthiest. The caregiver will bring the other person in - the sick one is doing OK, but I'm finding the caregiver to be the one to need help."

Jo Donaldson, the care management supervisor at the Butler County Area Agency on Aging, agrees that caregivers often neglect their own well-being.

"Respite is one of the last things caregivers ask for. It's one of the first things I tell them they need," she said. "The number one reason for nursing home placement is caregiver burnout," Donaldson added.

"Your loved one is going to be placed (in a nursing home) because you're burned out or your health declines - not your loved one's. We often see caregivers pass away before the person they are taking care of."

Although home health agencies often offer private duty respite care and adult day care, Donaldson said the cost for such help is not covered by insurance.

While West is training volunteers in response to this problem in Grove City, the Agency on Aging offices in Grove City, Butler and other locations often help caregivers find respite workers and then subsidize the cost for those who qualify.

Danik said she received a list of providers from the Agency on Aging five months ago, but at that time many were booked or unable to accommodate Danik's schedule preferences.

The companion she eventually chose was through a private agency, but the respite service is still subsidized. Danik said the company sent someone to evaluate her family's needs before deciding on a compatible respite companion.

Danik's mother said at first she shared Danik's reluctance about leaving Negley, but her fears were eased after remaining at home during several respite visits.

Both women say they have become comfortable with their companion, Diane Slimick, describing her more like a family member who will do whatever is required to make their loved one comfortable. Mother and daughter share an outing at least once a week, when they shop, eat in a restaurant with Danik's brother, and do errands.

"The first time you leave them is like leaving your baby," Danik said. "You're worried and you feel guilty and you're looking at your watch. You sit there and talk about them: 'I wonder if he's eating,'" she said of the first outing with her mother. "The first three hours we spent discussing the thing we were getting away from! We don't do that anymore."