Caregivers learn to cope while helping loved ones who have Alzheimer’s

  • Donna Grant Reilly sits with her husband Chuck Reilly in a garden at the memory care unit at Kendal at Hanover, on Tuesday, Sept. 10, 2019, in Hanover, N.H. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Donna Grant Reilly passes her husband Chuck Reilly his plate after helping him with his lunch in the memory care unit at Kendal at Hanover on Tuesday, Sept. 10, 2019, in Hanover, N.H. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • After having lunch with him Donna Grant Reilly settles her husband Chuck Reilly in for a nap at the memory care unit at Kendal at Hanover, on Tuesday, Sept. 10, 2019, in Hanover, N.H. Grant Reilly lives at Kendal as well in the apartment she shared with her husband before he moved to the memory care unit. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Donna Grant Reilly, left, laughs while her husband Chuck Reilly jokes with Erica Meyers the dementia care program director at the memory care unit at Kendal at Hanover, on Tuesday, Sept. 10, 2019, in Hanover, N.H. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Donna Grant Reilly and her husband Chuck Reilly walk back to the memory care unit at Kendal at Hanover, on Tuesday, Sept. 10, 2019, in Hanover, N.H. The unit had a barbeque outside for lunch that day, but Reilly wanted to eat inside. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • A photograph hangs in the kitchen of Donna Grant Reilly and her husband Chuck Reilly taken in Long Island, N.Y. in the late 1990's in their Kendal at Hanover apartment, on Tuesday, Sept. 10, 2019, in Hanover, N.H. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • After lunch with her husband, Donna Grant Reilly checks her email in her apartment at Kendal at Hanover, on Tuesday, Sept. 10, 2019, in Hanover, N.H. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

Valley News Staff Writer
Published: 9/14/2019 9:47:17 PM

HANOVER — After Donna Grant Reilly’s husband, Chuck Reilly, was diagnosed with Alzheimer’s disease nearly 10 years ago, she found it difficult to find someone to talk to about the experience.

“Nobody tells you what to expect,” Donna Grant Reilly, 84, said during a recent interview at Kendal at Hanover, where the couple has lived since 2014.

Even Reilly, who previously watched her mother struggle to care for her father when he developed dementia in his later years, wasn’t sure where to turn for assistance before moving to Kendal, the retirement community on Route 10 north of downtown Hanover. She didn’t want to burden her friends with her worries.

“Emotionally, it was horrible,” she said.

The Reillys have been married for 43 years, and it’s a second marriage for both. After careers in New York City — Chuck, 88, is a 1953 Dartmouth College graduate and was a successful financial adviser; Donna worked in various fields including television production, as a magazine circulation director and as a museum docent — they moved to Hanover in 2003.

For Chuck, Alzheimer’s came on slowly at first. He would drive to the tennis court where he played three times a week and then call his wife because he couldn’t find his keys. Sometimes they would be in the ignition. Another time he parked the car but inadvertently left it running.

As the disease progressed, Reilly also found that Chuck’s character would change at the end of the day, a form of “sundowning” or late-day confusion. Normally mild-mannered, he would become angry, and they’d have arguments that “would go nowhere,” she said.

Caring for a person with Alzheimer’s takes a toll. The progressive disease begins with mild memory loss and can lead to the loss of the ability to carry on a conversation and perform daily activities, according to the Centers for Disease Control and Prevention. It currently affects about 5.7 million Americans, according to the CDC. That number is expected to nearly triple to 14 million Americans by 2060. Accordingly, the demand for caregivers is expected to grow.

But caregivers are also at increased risk of stress, depression, unhealthy behaviors and poor attention to their own health, the CDC says.

Last year — about a year after Chuck moved into Kendal’s memory care unit — Reilly self-published a book on her experience, Learning the Hard Way: A Caregiver’s Struggle with Alzheimer’s, in the hope that it might help others wrestling with the disease.

“You need to get (help. You) can’t do it alone,” Reilly said. “That’s sort of my mantra.”

Dr. Robert Santulli, a geriatric psychiatrist who no longer practices but continues to teach at Dartmouth College and Geisel School of Medicine, said that depression is the most common symptom in caregivers of people with Alzheimer’s. Though their loved ones are still living, they can no longer maintain the relationship they once had.

“The biggest (cause) of the stress is losing a partner,” said Santulli, who knows the Reillys and wrote the introduction to Learning the Hard Way.

A large part of the joy of marriage is being able to do things together and share life’s joys and challenges, Santulli said. When someone develops dementia, they can no longer be the companion they once were.

“They’re there but they’re not there,” Santulli said.

Santulli described this as an “ambiguous loss.” The spouse without dementia or Alzheimer’s disease is unable to mourn the person who is still living but is mourning the loss of the relationships they once had.

People can live for years following the diagnosis of Alzheimer’s disease, which means that the caregiver is continually adapting as the disease progresses. Some people with Alzheimer’s disease can become paranoid and angry, so caregivers are forced to contend with the challenge of a loved one now treating them as an enemy.

Not knowing whether the day will be a good day or a bad day, is “part of the stress of it,” Santulli said.

Santulli urges caregivers to find support groups, or at least a supportive friend, preferably one who is going through something similar, to talk to about the experience.

“Make sure you talk to somebody every day who doesn’t have dementia,” he said. “For many people that’s a challenge.”

It’s also important, Santulli said, for caregivers to find someone to provide respite care, so the caregiver can continue to meet up with friends, volunteer or go to the doctor. People who have their own interests and friends tend to cope better with the challenges of being a caregiver, he said.

Though Kendal — a continuing care community where Reilly said they are fortunate to live — has a formal support group for people caring for loved ones with Alzheimer’s disease, Reilly said she didn’t feel comfortable participating because some of the other participants had been Chuck’s college classmates. She didn’t want to infringe on his dignity by discussing behaviors caused by the disease.

Instead, she and some fellow female residents have established an informal support group. They meet for coffee on Saturday mornings to trade ideas of how to navigate the illness.

“I feel helped by talking to them,” she said.

Besides writing the book, more recently she’s started a blog: alzheimersthehardway.com.

Upper Valley service providers say that they only hear from a small percentage of caregivers who could benefit from assistance of some form.

“People don’t like to ask for help,” said Deanna Jones, executive director of The Thompson senior center in Woodstock. “A lot of times they wait until they absolutely have to.”

But support is out there. The Thompson, other Upper Valley senior centers and the Dartmouth-Hitchcock Aging Resource Center offer in-person support groups for caregivers.

The Alzheimer’s Association operates a free 24-hour helpline, 800-272-3900. Senior Solutions, the area agency on aging for Windsor and Windham counties in Vermont, also has a helpline at 802-885-2669. A Vermont statewide helpline can be reached at 800-642-5119. In New Hampshire ServiceLink Aging and Disability Resource Center can be reached toll-free at 866-634-9412.

Kathy Harvard, whose husband, Andy, died of younger-onset Alzheimer’s disease last January at the age of 69, found (and still finds) support through an Alzheimer’s Association telephone support group for caregivers of loved ones with younger-onset Alzheimer’s disease. Harvard has, like Reilly, become active in raising awareness about the condition.

There’s a lot of fear and misunderstanding around Alzheimer’s disease, Harvard said. As a caregiver, she said she found that she internalized people’s anxiety about the condition, and it became her anxiety as well, so that when her husband, a 1971 Dartmouth graduate and former director of the Dartmouth Outing Club, was first diagnosed in 2009, they both felt the need to keep his illness a secret.

Since then, however, Harvard said she’s come to realize that being more direct about the condition allows people to step up and help as they are able. By explaining to people — friends, family and the broader community — that Andy had a brain disease that meant that he wouldn’t be able to make change for a cashier or carry on conversations as he once did, it opened the door for other people to show him empathy and support, Harvard said.

“People don’t mean to be mean. They just don’t know,” she said.

The extent to which other people are able to help, whether it’s taking the person with Alzheimer’s for a walk, sitting near him at a meal or donating to research for a cure, is dictated by their own fears about aging and losing their own memories, Harvard said.

“Each person you deal with, their timeframe and ability to understand (and) step up is different than the next guy,” Harvard said. “We are all ... doing the best we can.”

Harvard and Reilly are both participating in the upcoming Walk to End Alzheimer’s, a fundraiser for the Alzheimer’s Association, in White River Junction on Sept. 22. The event begins at Lyman Point Park. Registration starts at 9 a.m., there’s a ceremony at 10 a.m., and the walk starts at 10:15 a.m. More information is available at https://act.alz.org.

Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.




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