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A Caregiver's Story

Finding community in the struggle with Alzheimer’s disease

Peter and Judith Vearling have been married for 49 years – their 50th wedding anniversary takes place this September. They were college sweethearts, graduating from Rutgers University together, moved to Northfield in 1989, and have two grown daughters, Claudia and Courtney, and two grandsons. “Our two children and my wife are three of the best people I know,” says Peter, who appreciates that they can all count on each other.

Peter speaks of his wife with love and admiration. “She’s the most honest person I’ve ever known. Smart as anything. Incredibly well-groomed. Tremendous physical shape,” says Peter. “And then this starts to tear away at who she used to be.”

Six years ago, two incidents led Peter to suspect that something wasn’t right. At home, Peter and Jude use a French press to make their coffee; to brew a pot, you just add coffee grounds and boiling water. So when Jude set the plastic-bottomed press on a hot range to make coffee, Peter became concerned about his wife.

The second signal happened while Peter was away for the day at work. Before he left that morning, he loaded Jude’s car for a trip to the town dump. When he returned home, however, he saw that the car was still full. Jude had left with the trash and recyclables only to come back home, having been unable to remember how to reach her destination.

This second event prompted a visit to a neurologist, which in turn led to a trip to Massachusetts General Hospital in Boston for a brain scan. Yet, when the results came back, everything looked normal. A doctor prescribed Jude some medication, but it gave her a terrible rash, so they decided to take a break from that and found their way to the Memory Disorders Program at Baystate Medical Center in Springfield. It was there that the doctors confirmed that Jude had cognitive impairment and diagnosed her with dementia and Alzheimer’s.

After the diagnosis, Peter cared for Jude on his own while keeping up with his work as a basketball and softball coach for Northfield Mount Hermon in Gill. “For a while, I’d make dinner and then leave, and she’d eat,” Peter says. But then Jude stopped eating unless Peter was there, and he became afraid to leave her alone.

Jude has always been his best friend, says Peter, the person he collaborated with so many things in his life. “And now I have to make every single decision,” he says, for example, having to decide what she should wear.

Peter realized he couldn’t do everything on his own anymore and began researching different assistance options for Jude as well as himself. At the Northfield Senior Center, he found a support group led by Heather Tower for caregivers of loved ones with dementia, and he was also referred to LifePath for additional services. He joined LifePath’s support group, too, led by Molly Chambers. “She’s been a big help to me,” says Peter. In addition to offering peer support, the groups also share resource information and bring in speakers, such as lawyers, people from hospice, and local writer and speaker Mo Grossberger with his “Lessons Learned.”

Peter worked with Linda Puzan of LifePath to help address needs specific to the home environment, such as adding handles to the shower and introducing special eating utensils. Of particular usefulness was a chime added to the door that would indicate when Jude may be exiting the house on her own; after she had gotten lost while walking for a few miles, this became an important safety feature in the home.

Tia Polana of LifePath referred Peter and Jude to the Alzheimer’s Music Project. Peter shared suggestions for music that would suit Jude’s tastes, such as classical music, bluegrass, and rock. Peter Acker from the Alzheimer’s Music Project came to their home to deliver an iPod shuffle loaded with custom playlists and showed them how to use it. When Jude had difficulty using the headphones, their daughter purchased a special speaker for them. Now, Jude and Peter can enjoy the music together. “Music is something that, even though you might not remember the lyrics, you remember the rhythm,” says Peter. Jude keeps time with her hands and feet. “She will stop when something comes on that hits home, and listens.”

Last year, Peter attended the six week caregiver training, The Savvy Caregiver Program, through LifePath. The workshop for caregivers of loved ones with dementia outlines the disease prognosis and helps caregivers to manage their expectations and challenges. “The process is a little different for every person,” Peter says. “How stages manifest is different from person to person.”

Even though he was already several years into being a caregiver, Peter still found The Savvy Caregiver Program helpful. “I wish there were something like that earlier,” he says. “I thought the teachers were great.” He also appreciated meeting the other caregivers in the class. “You pull together almost like a little sub-family to lean on for support.”

After the workshop ended, some folks joined Peter at the Northfield Dementia Caregivers Support Group, which is a smaller gathering, while others joined the one at LifePath. Every once in a while, Peter talks on the phone with people from the group. “You just know you have people you can count on who understand what you’re going through,” says Peter.

Mar 2018 Caregiver support storyIn January, at the Memory Café in Shelburne Falls, Peter and Jude marked on maps places they had visited along with other folks with dementia and their caregivers. Here, says Peter, they can engage in activities together without feeling the weight of a dementia diagnosis. Photo by Leanne Dowd.Peter and Jude also attend the Memory Café at the senior center in Shelburne Falls, as well as the one at the Greenfield Senior Center. This is a nice reprieve from the role of caregiver. “We’re not sitting around talking about the ordeal we’re going through,” says Peter. Instead, the group of elders with dementia and their family caregivers participate in activities together, such as singalongs, exercises, and art projects. Their first activity at the Greenfield Senior Center was in the springtime; canvases printed with the outline of irises were set up, and everyone painted them in with beautiful colors. During the holidays at the end of last year, Peter and Jude made a thankfulness tree at the Shelburne Senior Center right before Thanksgiving, writing the things for which they’re thankful on the leaves and then displaying the tree in their home. The group in Greenfield made festive greeting cards together, which the Vearlings’ loved ones appreciated receiving. In the moment, says Peter, “You may not even be able to tell who’s the caregiver and care recipient.”

Once a month, Jude attends a support group for care receivers, led by Susan Sprung. Peter says that though the attendees may not always remember each other’s names, they are often laughing and hugging, and they “just feel like part of the group.” Many of the people in Jude’s group have caregivers who are in the same groups as Peter, who says he appreciates that this “community of people dealing with the same problem” can support each other and share activities together.

With assistance through grants from LifePath and the Alzheimer’s Association, Jude attends an adult day health program at GVNA HealthCare three times a week from 10 a.m. to 2 p.m. Some family friends lend a helping hand for now, but if Peter and Jude need additional services in the future, Peter knows he can turn to LifePath for support.

For now, Peter is focused on living in the moment. “When all this first starts happening, and you’re not used to it, and the person can’t think logically anymore and can’t sequence,” says Peter, at first you question – before you learn to accept instead. Peter says he learned to “gloss over the things that are wrong and focus on the things that are right.”

Peter encourages other people in his situation to reach out to LifePath for help. “It’s a lonesome existence otherwise.” He recommends that people start out with The Savvy Caregiver Program, so they can have a sense from the beginning of what will happen and what to do. “They definitely should join a support group,” says Peter, “and don’t stop after one. The more I went, the more I realized this is something I should keep doing.”

To learn more about the support options mentioned here and other services available through LifePath, contact the Information & Caregiver Resource Center.