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Silver Linings: The strain of taking good care

By GRETCHEN M. GROSKY
New Hampshire Union Leader

April 01. 2017 8:45PM
Shirley Gordon drops off her husband, Mike, at the adult day program at Easterseals in Manchester on Friday. Mike was first diagnosed with dementia in 2008, and Shirley is his primary caregiver. (DAVID LANE/UNION LEADER)

Shirley and Mike Gordon were ready for their golden years. Mike retired and Shirley was starting to wind down her career. They paid off their condo, bought a boat to enjoy on Lake Winnipesaukee, and talked about becoming snowbirds and wintering in warmer climates.

But Mike was becoming forgetful, misplacing items and misunderstanding messages.

Shirley said she should have known it was Alzheimer's disease. His father, mother and brother all had it, and Mike was showing all the symptoms. In 2008, doctors confirmed Mike had frontotemporal dementia and his memory and other functions would deteriorate rapidly.

But two years after the diagnosis, it wasn't Mike that doctors were concerned about. It was Shirley - because becoming Mike's full-time caregiver was taking its toll.

"I was still working full time, trying to manage it all, and whatever he was going through, I was trying to fix," she said. "It just wore me down after two years. The doctors were more worried about me than him."

Shirley Gordon is one of an estimated 40 million Americans now providing care to an aging loved one. AARP estimates that family members provided 37 billion unpaid hours of care in 2013. That same care would cost more than $470 billion in a professional setting - some $21 billion more than Medicaid spent that year, including federal and state contributions.

"It took me a year to get back on my feet mentally and physically, but I was determined to get him home. I was determined to give him the best quality of life," Gordon said. "I found the strength in me because I love him. I have so much love for him."

Similar stories

Shirley Gordon's story is a common one: family caregivers wearing down, not knowing where to turn for help and, in many cases, not being able to afford any assistance. Her story was echoed in a 35-page report on the state of caregiving in northern New England, released last week by The Tri-State Learning Collaborative on Aging. The collaborative works to help seniors age in place in America's "silver belt" - New Hampshire, Maine and Vermont, home to the oldest populations in the country.

The collaborative's "Cross-border Conversations on Caregiving" report is based on discussions with 168 caregivers and others across the three states. Their issues included isolation and a lack of information about resources, as well as a lack of access.

The report makes numerous recommendations, focusing on education, resources, transportation and community support. Specific recommendations include ideas on encouraging and rewarding employers that keep caregivers working, as well as advocating for more insurance coverage for in-home support and the expansion of respite services. It also addressed "community" with such ideas as developing an Uber-like app to immediately link caregivers to available volunteers.

Shirley Gordon has focused on helping other caregivers embark on such labors of love. She works as a caregiver coach for Easterseals in Manchester and tells her story to lawmakers at the State House and in Washington, D.C., to raise awareness about the challenges caregivers face.

"My goal is to help all my caregivers so they don't make the same mistakes I made in the beginning," she said. "If you're negative, it's not going to change the situation. It's not going to cure my husband."

Rising needs

While many conditions require caregiving, Alzheimer's and dementia are among the most taxing in terms of cost and care. According the U.S. Centers for Disease Control and Prevention, the number of deaths due to dementia climbed 89 percent between 2000 and 2014, while the number of deaths due to heart disease, stroke and cardiovascular disease fell nearly 30 percent.

The Alzheimer's Association stated that the national cost of dementia care in 2016 was $236 billion. In the last five years of life, the cost of care for one Alzheimer's patient is $289,000, compared to $175,000 for someone with heart disease or $173,000 for someone with cancer.

But Gordon points to the caregiver's health, which also often suffers. A 1999 report in the Journal of the American Medical Association reported that elders who experience caregiving-related stress have a 63 percent higher mortality rate than non-caregivers the same age.

"A lot of times, the caregiver dies first," she said. "It's just too much on everyone and everything."

And it all adds up to more health care costs, Gordon said. "It's an epidemic, a terrible epidemic," she said. "It's the most expensive health care crisis we have and it's going to break Medicare and it's going to break Medicaid. We're headed for a mess."

Working and caring

Marc Larochelle of Bedford and his family are caregivers to both his 82-year-old father, Marcel, and his 88-year-old father-in-law, Dennis. Dennis lives with Larochelle and his wife, Kitty, while Marcel still lives at home with his wife. He relies on his large family, including his six children, to help with their care.

Both fathers attend the adult day program at Easterseals New Hampshire in Manchester, which allows both Larochelle and his wife to continue working.

"Without that flexibility, I don't know how we would be able to do this," Larochelle said.

Larochelle said caring for patriarchs is much like raising a child, using similar techniques, such as distractions to calm a situation or playing music to alleviate stress. Both men are in the advanced stages of the disease, but Larochelle said it's important to his family to provide the care.

"It's very rewarding, in a way, to give something back to someone who has given so much to you," he said with tears in his eyes. "It's just very rewarding."

Finding respite

Andy Demers' wife, Diane, was diagnosed with early-onset Alzheimer's 10 years ago at the age of 62.

"But it was five years before that she was showing signs," he said. "Nobody thinks Alzheimer's at that age, but then you realize it's not a vitamin deficiency or something like that. It's Alzheimer's."

Diane also spends time at the Easterseals adult day program. Andy signed her up to give himself a break, but found Diane was the one who benefitted. Diane no longer communicates or has expression, but he says "you can sense" her happiness in going.

"It's really made her healthier," he said. "She's very docile, very cooperative and it makes it easier. There's no paranoia or anxiety. She likes going."

His wife is on Medicare, which does not cover the cost of the day program, but he was able to find a group that provides grants to help caregivers like himself.

Easterseals Director of Senior Services Laurie Duff said the cost of the program is about $70 per day. Medicare won't pay, but some long-term-care insurances do. She said Medicaid pays about $49 a day for those that qualify. She said Medicaid's reimbursement equals about $5 or $6 per hour for such tasks as bathing the patient and providing two meals a day.

"We haven't seen a raise in those rates in over 10 years," she said.

Finding help

Demers says there are a number of resources for caregivers. "You just have to find them." Demers retired as a public accountant when his wife was diagnosed, and said he spends much of his time researching the disease and what's out there for help.

Both Demers and Gordon said they were given information about resources at the time of the diagnosis, but that's not always the case, according to the collaborative's report.

The report called for teaching more health care providers about the types of services available "to build a clear, safe and supported path from hospital to community" as well as building a strong community-based volunteer system to go into doctors' offices and hospitals to inform the newly diagnosed.

The report suggests having more people like Gordon. She said she's taking what she learned from support groups, books, and personal experience to make it easier for others who have their own journey to make.

"I love it. It's in me. I'm doing things I never thought I could and I find the strength because I love him," she said.

Silver Linings is a continuing Union Leader/Sunday News report focusing on the issues of New Hampshire's aging population and seeking out solutions. Union Leader reporter Gretchen Grosky would like to hear from readers about issues related to aging. Contact her at ggrosky@unionleader.com or 603-206-7739. See more at www.unionleader.com/aging.


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