When looking back on the early days of her mother's battle with Alzheimer's disease, Ann Scannell remembers a coat. Her mother would say again and again that she liked Scannell's coat, as if seeing it for the first time.
Her mother, Jeannette Elie, was always an independent woman. She worked until she was 78, lived alone, cooked and took care of herself. And she'd never say that something was wrong. But to Scannell and her siblings, something was wrong.
When Elie was diagnosed with Alzheimer's disease in 2004 at age 81, a doctor suggested that she move to a nursing home. But Scannell disagreed. She was upset the doctor hadn't discussed more options.
Later that year, Scannell and her siblings attended the Merrimack Valley Alzheimer's Conference, the largest Alzheimer's event north of Boston. They were amazed by what they learned.
"It opened up all of our eyes that you don't have to do it alone," Scannell says. "It was good for us to hear."
This year's conference is Saturday, April 26, at the Wyndham Andover Hotel. In its 20th year, the conference is designed for family members and professionals caring for people with Alzheimer's disease or dementia.
The idea that families are not alone is at the heart of this year's keynote presentation from Jan Chiampa, regional director for resident and family services at Benchmark Assisted Living in Wellesley.
Chiampa says caregivers often end up exhausted because they don't know what kinds of resources are available. Unlike other diseases in which patients can decide upon their own care, people with Alzheimer's can't make those choices as the disease progresses.
"There's a huge part of the disease process where the patient is no longer actively involved," Chiampa says.
That leaves much of the burden of care and decision making with family members.
"It's just so different than any other disease you can think of," she said.
Several years passed between the time Jim Cutter first noticed signs of Alzheimer's disease in his wife, Theresa, and when she was finally diagnosed. The couple lived together in Methuen for 52 years before relocating to a home in Salisbury with fewer stairs.
Cutter, too, stresses the importance of seeking support, even during the initial stages of the disease.
"Get all the help you can," he says. "If you try to do it yourself, it's not going to work."
For the Cutters, help comes in the form of adult day care, which allows people to live at home but still receive care during the day. Theresa attends Harborside Adult Day Health Center in Newburyport. Jim drives her and says she seems happy to go.
Cutter doesn't think his wife will need to move to a nursing home in the near future, and says making that decision would be difficult.
"We've been married 57 years, so it's very hard to face that," Cutter says.
Making decisions about care is one of the hardest things family members and caregivers confront when a loved one has Alzheimer's disease. Yet the decisions are easier when families know their options.
For example, Scannell says attending the Merrimack Valley Alzheimer's Conference taught her about adult day care. Scannell and her siblings enrolled their mother at The Community Family, a center in Lowell that offers specialized services for people with memory loss. The Community Family offered Scannell's mother a job helping out around the center, which made her feel needed and look forward to going.
Eventually, Scannell's mother moved to D'Youville Senior Care, a nursing home in Lowell where she lives now. Yet Scannell sometimes second-guessed the decision because her mother looked physically healthy.
Chiampa says caregivers often struggle when Alzheimer's patients "look good" but can't remember things. Scannell says the guilt can be terrible, but for her mother the move was about safety.
"We knew it was the right thing to do," she says.
Attending the conference can also help caregivers connect with other families. Chiampa says more than 5 million Americans have Alzheimer's disease, which means families all over the country face the kinds of decisions that Scannell and Cutter must make.
"One of the most important things a caregiver can do for themselves is attend a support group," Chiampa says. Support groups can offer advice and reassurance, a powerful message from other families who've experienced the same struggles.
In addition to Chiampa's keynote presentation, this year's conference will include four workshops. They will cover legal issues, such as power of attorney; making decisions about nursing homes; creating a meaningful day for Alzheimer's patients; and end-stage Alzheimer's care.
Janice Boyd, community educator for Elder Services of the Merrimack Valley which co-sponsors the conference with the Merrimack Valley Alzheimer's Partnership, said the workshops cover topics that address different stages of the disease.
Scannell says her mother doesn't always remember who she is, but loves a hug, to hold her hand, and to take walks. She knows Scannell is someone she can trust.
Cutter says the same about his wife.
"She hasn't called me by my first name now for about 18 months," he says. Still, she knows that he's there to take care of her.
"My wife still has her personality," Cutter says. "I can get a few laughs out of her."
If you go
What: The 20th Annual Merrimack Valley Alzheimer's Conference
When: 8 a.m. to 12:30 p.m., Saturday, April 26
Where: Wyndham Andover Hotel, 123 River Road, Andover
Cost: Free to family caregivers and $25 for Alzheimer's professionals
Registration: Reservations are strongly recommended. Call Janice Boyd, community educator for Elder Services, at 978-946-1321.
