Caring for Caregivers
Agency offers support to those providing care for others
By Rachel E. Sheeley
Staff writer

One day, it just got to her.
She had nearly given up riding her bike, spending time away from home, and meeting with other people. Devoting all of her time caring for her ailing husband became too much for her.

That day, Virginia Brumley left her house, got in her car and drove around. The Richmond woman ended up at the Area 9 In-Home and Community Services Agency where she once had volunteered as a receptionist.

"I was desperate," she remembers. "I was just seeking help. I had no idea what they could do. I needed to talk."

Brumley found someone willing to listen and willing to offer help. Area 9 offers family caregivers support and assistance through its Family Caregiver Support Program.

Caregiver training coordinator Linda Sayne said many caregivers, whether they're aiding a spouse, sibling, child or parent, are sometimes overwhelmed with the responsibility. The program offers them support, guidance and ways to find respite from the daily duties they take on and handle with love.

The caregiver program is about a year old. It is celebrating November as National Caregivers Month with activities for caregivers in each county served by Area 9.

"It amazes me the stories that I'm hearing," Sayne said. "Their whole life revolves around this person (who is ill). A big part of my job is educating caregivers that they have to take care of themselves."

Jane Cadwallader of Fountain City turned to Area 9 after taking her mother into her home. She and her sister had seen their mother decline into Alzheimer's disease over a couple years and knew that she could no longer live alone. They agreed to share the caregiving duties, with their mother first moving in with Cadwallader.

"I found it to be real overwhelming," Cadwallader said. "It was a real lifestyle change, staying at home. I'd always worked. There was an extra person in the house and she wasn't accepting it well. A lot of times, she didn't even know who I was. It just wasn't my mother anymore."

Wondering if she was doing the right thing, making the right choices, led Cadwallader to the caregiver program.

"The information I've gotten has been really good to help me know what to expect," she said. "One of the best things is (learning) not to feel guilty about feeling overwhelmed. I also learned there is help out there if you're at your wit's end."

A 2000 survey from the National Family Caregivers Association showed that 26.6 percent of the adult population -- about 54 million people -- were involved in caregiving during a 12-month period.

The survey showed that caregiving is no longer just a women's issue. Caregivers are now 56 percent female and 44 percent male. Of the respondents, 52 percent said they provided personal care such as help with dressing, bathing, toileting, eating and mobility, and 46 of those said they also providing nursing such as managing medication, changing dressings and monitoring vital signs.

All of that care is critical in helping older people remain in their homes or the homes of their family members. Those family members -- not social service agencies, nursing homes or government programs -- are the mainstay of long term care for about 80 percent of older Americans.

If the work of caregivers had to be replaced by paid home care staff, the estimated cost would be $45-$94 billion each year, according to the National Alliance for Caregiving and an AARP National Caregiver Survey.

After Brumley's initial visit, Area 9 was able to help her and her husband, Jim, who has Parkinson's disease and some dementia. Through Area 9, they were able get in-home health care assistance to help Jim get ready each morning and they helped her arrange time for Jim to spend several days a week at Adult Day Care.

"It has taken the pressure off me," Brumley said. "It helps you get renewed to do what you've got to do. It just gives me a brighter attitude."

She is able to ride her bike more often, take walks with her grandchildren and go out for an hour or two with a friend. It gives her time to do devotional study each morning and to attend regular Bible studies, both a source of spiritual strength for her.

Brumley even took advantage of the opportunity to have Jim stay at a nursing home for a weekend while she got away. Leaving him at the nursing home made her cry, but she knew it was temporary and good for both of them. It helped her see that for now, keeping him at home is the right decision for her.

"We married for better, for worse. This is worse. It could be better," she said.

Jim's problems began about three years ago and he has steadily declined. He has trouble walking, rising and taking care of many daily functions. His fine motor skills are nearly gone.

For Brumley, she is not only losing her time to Jim's illness, but what is essentially Jim, the man she married and shared her life with. She misses having his help in making decisions, sharing a cup of coffee and a cookie in the evening with him.

"It's like you really don't have a companion now," she said. "We did everything together. I've always been a people person. He doesn't want to go out much anymore. It is lonely to be a caregiver. You can't move about like you once did."

In addition to assistance from Area 9, Brumley is taking advantage of the Adult Day Care support group, help from her church, Christ Presbyterian, and help from the Stephen Ministries at Central United Methodist Church, who simply offer someone to talk to.

She and Jim left their home of 34 years to move into a more easily maintained basement apartment in the home of her daughter and son-in-law.

"Area 9 really has been the big lifesaver to me. You can call (Linda Sayne). She's always got time for you," Brumley said.

Her friends also have been helpful.

"You've got to really be grateful for these people," Brumley said.

Like Brumley, Cadwallader has appreciated the advice and information she's received.

Her mother's illness developed first with forgetfulness, then not being able to handle her finances. It progressed to her calling Cadwallader because she thought someone had been in the house when she'd wake up to find the TV on and didn't remember having turned it on in the night.

"Bringing her into our homes was easier than me staying there," Cadwallader said. "You find yourself very busy."

Cadwallader has attended the caregiver support group and used Sayne as a sounding board. Although her mother is now at her sister's southern Indiana home, she is still using the agency's information.

One piece of advice about Alzheimer's was to monitor the television programs that the patient watches because they may confuse it with reality. Knowing that, she wasn't surprised when, while watching ice skating, her mother said that she was cold and didn't want to do it anymore.

She has childproofed her home to keep her mother safe and Cadwallader doesn't argue with her mother when she confuses Cadwallader with other female family members or doesn't remember they are deceased.

"I'm better off to tell her what she wants to hear," Cadwallader said.

She also has learned it's important to develop a good relationship with her mother's physician and his staff so they can answer any questions she has.

She has used some day care for a break from her mother's care. She has considered a weekend stay at a nursing home, but not taken advantage of that option. For her, talking with others in the same situation has been the most helpful.

"You don't know what it's like until you do it," Cadwallader said. "I'd do anything in the world for my mom -- my sister would, too. That's important to us.

"I'm grateful that we're able to take care of her in our homes ... hopefully give her the best care that we can until we can't do it anymore," she said.


Unselfish Sacrifice: Virginia Brumley sits with her husband, Jim, at their home in Richmond Wednesday. Virginia is the primary caregiver for Jim, who suffers from Parkinson's disease and some dementia. Virginia has taken advantage of the help provided by the Area 9 In-Home and Community Services Agency.
If you go

What: Caregiver Day, "a special day for special people," sponsored by Area 9 In-Home and Community Services Agency and community organizations.

Where and when:
Union County, Edwards Memorial United Methodist Church, Nov. 8

Fayette County, Baptist Temple, Nov. 12

Wayne County, Friends Fellowship Community, Nov. 19. Rusty Ammerman's Dimension of Illusion will perform after lunch.

Franklin County, Brookville Healthcare, Nov. 20

Time: 10 a.m.-2 p.m.

Includes: lunch, prizes, caregiver bingo and massages.

Pre-registration required: all events, Area 9, (765) 966-1795 or (800) 458-9345; for Wayne County event, (765) 962-6546.
To learn more

Family Caregiver Support Program, provided by Area 9 In-Home and Community Services Agency

The program offers information to caregivers about available services; assistance to caregivers in gaining access to services; individual counseling; organization of support groups; and caregiver training to assist caregivers in making decisions and solving problems relating to their caregiving roles; respite care to enable caregivers to temporarily take a break from their caregiving responsibilities; and supplemental care serves, on a limited basis, to complement the care provided by caregivers.

Contact: Linda Sayne, caregiver training coordinator at 520 S. Ninth St., Richmond, IN 47374 or (765) 966-1795 or (800) 458-9345.

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