Legislation for caregiver support underscored by Maine lawmaker’s stroke-debilitated husband

Rep. Ann Peoples, D-Westbrook, talks to Rep. Drew Gattine, D-Westbrook, (right) in hall at the State House in Augusta Friday while her husband Patrick listens. Patrick suffered a stroke just over a year ago and comes to work with her nearly every day.
Troy R. Bennett | BDN
Rep. Ann Peoples, D-Westbrook, talks to Rep. Drew Gattine, D-Westbrook, (right) in hall at the State House in Augusta Friday while her husband Patrick listens. Patrick suffered a stroke just over a year ago and comes to work with her nearly every day. Buy Photo
By Christopher Cousins, BDN Staff
Posted March 13, 2013, at 11:18 a.m.

AUGUSTA, Maine — Rep. Ann Peoples married her husband, Patrick, 35 years ago. They raised children together, worked successful careers in the same field and planned to spend their old age relaxing in their second home up north.

But in January 2012, Patrick suffered a debilitating stroke and everything changed. Growing old together is a common goal for married couples, but not this way.

“It’s just what you do,” said Ann. “You just keep putting one foot in front of the other. I consider myself fortunate because I have a roof over my head, food, work that I love and a companion who I love very much.”

When the Maine House of Representatives is in session, Patrick sits at the rear of the chamber, behind the glass wall that separates lawmakers from the general public. When his wife is listening to hours of testimony in the Transportation Committee, Patrick sits next to her through it all, slumped over in his wheelchair. But there’s no question he’s listening. Later in the State House cafeteria or on the ride home, he and his wife banter about that day’s debate. Patrick’s speech is blurred by his physical condition, but not his mind.

“Those two are the model of what a loving couple should be,” said Maine Sen. Anne Haskell, who like Peoples, is a Democrat from Westbrook.

Ann Peoples said it took her decades to learn what “in sickness and in health” means.

“One of two things is going to happen to you at an advanced age,” she said. “Either you’re going to need long-term care or you’re going to die. There is no alternative.”

There are alternatives available for spouses and other loved ones of people sick enough to need round-the-clock care, according to Brenda Gallant, Maine’s long-term-care ombudsman. They include homemaker care, in which workers go to a person’s home to help with household chores; home-based care, in which medical professionals provide services in a person’s home; and full-time nursing homes. But there are waiting lists for those services, including 1,530 for the homemaker program and about 60 for home-based care. There also are more than 600 people waiting for financial assessments for state funding for home-based care.

“Maine families really are the backbone of the long-term care system” said Gallant. “With respect to home and community-based services, we only supplement what families provide. There’s a tremendous benefit to the person who’s receiving the care as well as the long-term care system in general.”

According to Gallant and others, funding for long-term care programs lags far behind the need, which has the troubling side effect of pushing people into nursing homes ahead of their time. In addition to separating families too early, it costs the state and federal governments millions in Medicaid dollars.

And there’s the personal cost. Ann and Patrick Peoples said they make too much to qualify for Medicaid and not enough to afford $220-a-day adult day services.

“We just don’t have that kind of money,” said Ann Peoples.

That reality isn’t lost on Sen. Margaret Craven, D-Lewiston, or Rep. Richard Malaby, R-Hancock, both of whom have bills pending that would improve the situation.

Craven’s bill, An Act to Fully Fund the Homemaker Services Program, has already received preliminary approval in the House and Senate. It would provide $1.5 million in additional funds in each of the next two fiscal year for the Department of Health and Human Services homemaker services program, which Craven said would help eliminate the waiting list. She said the homemaker services program costs about $8,000 a year for the average family, compared with about $68,000 a year that a nursing home might cost.

Craven, who is the Senate chairwoman of the Legislature’s Health and Human Services Committee, said she is leading an effort to find the $3 million her bill would cost by finding other savings within DHHS.

“A lot of people are waiting for these services,” she said. “My argument is that it is always really so much less expensive to serve people in their homes than it is to serve them in a nursing home.”

Malaby’s bill, An Act to Provide Additional Funding for Respite Care for the Elderly and for Adults with Disabilities, would appropriate $130,000 next year and $330,000 the year after for DHHS’s adult day services program. Malaby said the additional money in the program — which would put total state spending at $450,000 and $650,000 for the next two years, respectively — would help make it possible for businesses and organizations that provide adult day services to operate in the black. He hopes the effect of his bill, along with the relatively low cost, will help it find success in a budget climate where cuts rather than additional funding are the norm.

“These companies have to survive in order to provide the services,” said Malaby.

Jessica Maurer, executive director of the Maine Association of Area Agencies on Aging, applauded the bills. She said there are as many as 230,000 everyday people in Maine who are informal caregivers for someone with chronic medical conditions that make caring for themselves impossible. She said there are millions of informal caregivers across the country.

“The amount of money they save the taxpayers every year is in the billions,” she said. “If the family is not caring for that person, the system has to. We as a human race have not only a moral obligation but an economic incentive to support informal caregivers.”

Perhaps Malaby’s and Craven’s bills will gain more traction, given the fact that lawmakers are confronted with Ann and Patrick Peoples’ situation on a nearly daily basis. Some, such as Rep. Drew Gattine, D-Westbrook, who has known Ann Peoples since 10 years ago when they served on the Westbrook City Council together, said the couple is inspiring.

“They’re obviously inseparable now, but they’ve always been inseparable,” said Gattine, who sits next to Peoples in the House. “Both of them have always been very, very involved in our community. It doesn’t surprise me at all that Ann has found a way to make this work for both of them.”

Peoples said Patrick lobbied her strongly to seek re-election to her House seat, even after his stroke.

“The people wanted her back anyway,” said Patrick, 79, a physics buff and retired electronics research scientist who spent many years working for S.D. Warren in Westbrook. As for living in a stroke-ravaged body, Patrick said he’s learning to adjust.

“You pay more attention to the details,” he said in a British accent that still comes through. “It makes you really think about the way you’re moving.”

But devotion and support doesn’t make life easy. Most weeknights they stay at the Senator Inn in Augusta. In the morning she prepares him for the day, including lifting him in and out of their Subaru. He needs help with almost everything physical, though he has improved immensely. He recently marked a minor milestone by eating a cafeteria hot dog after spending six months last year without the ability to swallow.

“You always hope for the best and he’s still improving, but he’s never going to be independent,” said Peoples. “I’m here to take care of Patrick but all of this has made me realize, who’s going to be here to take care of me someday?”

http://bangordailynews.com/2013/03/13/news/state/legislation-for-caregiver-support-underscored-by-maine-lawmakers-stroke-debilitated-husband/ printed on September 19, 2014