As medical science further extends life expectancies and as the elderly population in Alaska continues to grow, it is becoming more likely that many Alaskans will one day be responsible for caring for a parent or older family member.
Adjusting to the role of caregiver is a difficult experience, even in the best of circumstances, like when the role change has been planned for well in advance and when the family lives in an area where there are services and programs available to help.
Finding yourself in the role of caregiver without much advance notice or planning, and without a clue of what resources are available to help, makes the transition all the more difficult.
"People who are not doing this do not understand what it's like," said Joan Crow-Epps of Soldotna, who takes care of her 78-year-old mother, Patricia Muir, who has a polio-related mobility disability, diabetes and Alzheimer's.
"It's like having a disabled child. You're in this whole new universe and other people just don't get it."
Crow-Epps had been shopping and running errands for Muir ever since she came down with polio, but becoming a full-time, live-in caregiver was a new and sudden experience for her. Crow-Epps had a mild stroke in January 2001, so Muir started having a friend help care for Muir, for fear that Crow-Epps wouldn't be able to. As it turned out, the "friend," was doing more harm than good -- taking advantage of the situation to take money from Muir's bank account, Crow-Epps said.
When the family discovered it, Crow-Epps' sister in Anchorage took over handling their mother's financial matters, and Crow-Epps moved in with Muir to take care of her.
"I just sort of moved in on her and wouldn't go away," Crow-Epps said. "After I moved in, I started to figure out how to do it. I got a lot of information off the Internet and information from books. But one thing I really missed was people who were in the same situation as me."
Up until a year ago, there wasn't much available on the Kenai Peninsula in the way of organized help for people like Crow-Epps who take care of elderly relatives.
There are many agencies and organizations that offer services and resources for elderly people with certain conditions, like Alz-heimer's, diabetes or mobility disorders, but there were no comprehensive sources of help for the caregivers themselves.
That's where the National Family Caregiver Support Program comes in.
The program was established on a federal level two years ago. A peninsula branch that covers all the main communities as well as rural communities like Tyonek, Seldo-via and Port Graham, opened a little more than a year ago after the Soldotna Senior Citizens Center heard about the program and applied for a grant.
"We read about it, and we applied for the grant to get family caregiver services onto the peninsula because we've seen the need and because we work with it," said Jan Fena, administrator of the Soldotna senior center. "With the senior population, the way its growing -- it's going to grow 246 percent over the next 25 years. There's the need right there. Alaska has the second fastest-growing senior population in the United States. That's why we see the need."
The senior center administers the grant, and the program's services are operated by Robin Lampman, program coordinator, and others out of Suite 3-B, Building F in the Red Diamond Center.
The program is designed to offer information, resources, outreach, networking, training and support for people who provide in-home care for someone 60 or older with Alzheimer's or related disorders, like dementia or a condition resulting from head trauma.
The elderly person doesn't have to be actually related for the caregiver to qualify for assistance from the program. Long-distance caregivers -- people who are involved in caring for someone who may live in another town or state -- also qualify for assistance from the program, as do grandparents who care for grandchildren up to age 18 who have a dementia-related disorder.
According to Lampman, the program is mainly a clearinghouse of information for caregivers and a way to put caregivers in touch with the local specialized agencies and organizations that can provide services and resources for the person they're caring for.
"It's a fact that there are so many situations where the family caregiver isn't aware of the availability of services," Lampman said. "... We can hook them up with care coordinators, respite care, Medic-aid waivers, (etc.). We've developed a resource directory for the peninsula and are updating it for caregivers with all the local agencies and what they do, the doctors down here, and the care coordinators."
In addition to its referral services, the program publishes a monthly newsletter on topics of interest to caregivers, like body mechanics, Medicaid issues and long-term insurance, and coordinates with peninsula senior centers to reach caregivers. It also offers training courses on topics like CPR, elder abuse and hearing loss.
The topics of these classes and newsletters are designed to address the needs of caregivers, Lampman said. She and the other program coordinators speak with caregivers over the phone, one-on-one or in the program's monthly caregiver support meetings to find out what information and assistance they need.
"We're there to meet new caregivers and update the program," Lampman said. "We're involved in finding out what the caregiver needs, because those needs always change."
Since finding out about the program, Crow-Epps has utilized it to get referrals to local agencies that can help with the care of her mother and has participated in some training.
"Doing the training is really helpful," she said. "If you can imagine suddenly moving in with someone who needs physical assistance to get in and out of a car, in and out of bed and in and out of a chair, and you have absolutely no idea how you're going to do it because this person weighs more than you do, it really helps to have somebody train you."
Crow-Epps has found the monthly support meetings the most useful, she said, because it gives her an opportunity to meet with other people who truly understand the challenges with which she is faced.
"The biggest complaint caregivers all have is isolation," she said. "(The meetings) have helped a lot with that. I don't feel like I'm in this all by myself and nobody understands because there are other people in the group I can talk to about it and they understand. ... It's been very helpful to be able to meet other caregivers and to have a support group where I can go and say, 'Gee, this came up and I don't know how to handle it,' and they say, 'Oh, we did this last year and here's what we found out.'"
Program organizers are happy with it as well. According to Fena, the program added 86 new caregivers to its list of people served in July through September alone. They had planned to reach 340 caregivers in all over the past year. The program is relatively new and still expanding to offer new services in the future, including respite care.
"We feel that the programs that we've put in place have really succeeded," Fena said. "... The training and seminars we've held have all been full, and we've received very positive feedback from all of it."
To reach the peninsula branch of the National Family Caregiver Support Program, call 262-5456 or (866) 766-8210.
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