HAMPDEN, Maine - We continue now with our three-part series on the challenges facing caregivers. A report by the AARP earlier this year found that family caregivers in Maine who give their time to look after elderly or ailing relatives contribute nearly $2.5 billion in free health care to the state every year. And it's a situation that's likely to get more critical, if you consider the demographic trend - namely that 50 Mainers are turning 65 every day, while the birth rate is falling at the same time.
Action is being taken - a task force on aging has been formed in Maine, and lawmakers are set to vote on a package of proposals in the next session aimed at helping the state's older population "age in place" - or stay in their own homes for as long as possible. Last week we heard about the personal cost often paid by caregivers for looking after an elderly relative at home.
This week, we're looking at a case where involvement of the local community played a major role in decreasing the burden of caring for a loved one in need.
"We couldn't have done it without them, we absolutely couldn't, and George would not have been able to keep going as long," says 71-year-old Janice Von Brook, of Hampden.
Janice is forever grateful for the network of 20 or so friends and neighbors who helped her over the last few years. In January, she lost her husband of 17 years, George Miller, to ALS - the neuro-degenerative condition also known as Lou Gehrig's disease. Right up until the end, they lived together on the 100-acre farm where George had raised cattle for nearly 50 years.
"It was really a joy to spend time with him," she says. "He was quite a unique person - very, very strong, and very quiet."
In fact, it was George's silent stoicism that helped mask the early signs of ALS, which he began to show in his mid-60's. He died at 71. "The first thing that he noticed was that he couldn't speak," she says. "That really didn't bother him too much because he was sort of an old farmer and never talked anyway."
Janice - who held down a full-time job during George's illness, and still does - says she feels lucky that the disease progressed slowly. She says it was only during the last year of his eight-year struggle with the disease that he began to deteriorate rapidly.
"He lost his speech, he had trouble breathing and swallowing," she says. "He then lost his balance, so he used a walker. His legs stayed strong enough to support him. So he was able to keep farming at some level for all the years - up until the week before he died he was on the tractor, but with a lot of help."
And most of that help came from friends and neighbors - people like the Treadwells, who live in nearby Carmel.
"You know, we'd do anything from - we'd help him sort cows, ear-tagging, castration, castrating pigs," says Steve Treadwell. "I repaired tractors and mowers and bailers, and I'd take vacations and help him hay - all stuff I really enjoyed doing, so it worked out well."
Steve Treadwell, along with his wife and three daughters, were close friends with Janice and George before illness struck, so he says there was never any question they would help with the care-giving. As a way of paying back her cohort of volunteers, Janice set up an exchange where helpers could share in the bounty of the farm.
"We'd get a pig and we'd get a side of beef. We've helped them split firewood," Treadwell says. "I'd cut it, they get theirs and we get ours. A lot of things that worked out mutually beneficial for us."
Not that payment was their motivation, says Treadwell. They did it to help a neighbor in need. "That community, and that support from your community, is the key to adding any quality at all to the end of life," he says.
"Well, it says a lot about how people in Maine are," says Lori Parham, executive director of the Maine chapter of the AARP. "Maine is very community-focused, and we hear from a lot of folks who have had to reach out to friends and neighbors who really have come through and made it possible for them to provide the care they need," she says.
But Parham says not everyone is fortunate enough to have such a network of support around them - and besides, it still doesn't address the underlying problem. "If you look at the projections, we're going to have fewer and fewer people to care for our older residents, so we have to start to address those issues."
One way of easing the burden on caregivers is to encourage employers to be as flexible as possible with workers who are also caring for an elderly relative. To this end, AARP runs an initiative called "Best Employers for Workers Over 50."
Janice Von Brook says she feels lucky that her employer - Jackson Lab - was understanding and gave her the flexibility she needed when it came to caring for her husband, George Miller. She also feels lucky she had the community support that enabled George to stay at home until the end, in the same house where he was born.
"When someone becomes ill, we want to keep them at home, and if there's a way to improve the possibility of keeping people at home rather than sending them to an institution, I think we need to fight for it," she says. "It is critical, it is critical."
Next week we explore the challenge faced by elderly caregivers looking after younger family members.
