Halloween observances in the U.S. reveal that many people enjoy feeling scared. Yet humans tend to shy away from real-life unsettling scenarios, like those involving disease and decline. This column marks National Family Caregivers’ Month by featuring how the local Community Engagement Center (CEC) supports people caring for loved ones affected by various types of dementia.

Kate, 71, moved to Greenfield from eastern Mass. several years ago with her husband, David. A former journalist, Kate works from home doing website development. She brings David to the CEC on Tuesdays and Thursdays, taking advantage of 10 weekly hours of respite offered at no charge.

David’s vascular dementia diagnosis has utterly changed their lives, and Kate is deeply grateful for the CEC. “It gives us structure,” she said. “At first, David didn’t really want to come, but I figured if I told him he’s coming as a volunteer, he’d be all in. For decades, he volunteered in many programs, including the Peace Corps. Now he loves coming to what he calls Group, or Club.” Kate added, “I can’t even talk about this without crying. I’m so grateful.”

CEC offers activities like physical movement, music, arts, shared meals, and games. Those with dementia can have fun while caregivers get a break. The program is housed at 101 Munson St. in Greenfield under the auspices of LifePath, whose mission is to ensure that older adults and individuals with disabilities can remain safely in their homes and communities, and live with dignity and independence. CEC hosts an open house this Wednesday, Nov. 11 from 11 a.m. to 3 p.m., with speakers, live music, and a range of activities.

“Caregiving has so many challenges, and often the caregivers are not recognized,” said CEC program manager Donna Bigelow. Program coordinator Sue Lahoski added, “Our participants make strong connections with each other, and so do the caregivers.” Bigelow and Lahoski said that many wished the program could run Monday through Friday, rather than just twice a week.

(CEC) is a lifesaver,” said Kate, “but from Thursday to the following Tuesday, that feels like a long stretch.” She surmised that someone unaware that her husband lives with dementia “might think he’s absent-minded or has ADD.” David was diagnosed with mild cognitive impairment in 2019, and has significantly changed since that time. “Just two years ago, he was still fairly self-reliant,” said Kate, “but then he couldn’t remember his children’s names.” A geriatric specialist determined that it was no longer safe for David to drive, despite the fact that he’d had no accidents.

David is a strikingly handsome man who exudes joie de vivre. Kate’s eyes moisten as she describes her husband’s life before dementia. He was a two-term mayor of an eastern shore town about the size of Greenfield; he served as the acting director of the public library in a large town near Boston. “Everybody knew him,” said Kate. “He was multilingual and involved in so many things. These days, he paces around our home, opening and closing cupboards, constantly whistling softly, even between bites of food.”

Kate finds it difficult to concentrate on work tasks. “I don’t get mad at David,” she said, “but I’m mad at the reality.” Married for over 25 years, they shared delightful escapades, but David can’t recall their adventures: ”He has no recollection of the time we kayaked on the Erie Canal and saw an eagle.” Kate said that being the sole keeper of their memories is an emotional challenge; other difficulties arise from day-to-day details, like convincing David to change his clothes. “Grocery shopping is an ordeal.” Kate tried to handle their situation on her own until a friend who works with elders took her aside. “Our dear neighbor, Ellen, said she could tell by the way David walks that he has dementia,” said Kate. Ellen suggested programs that offer support.

Your Daily Puzzles

Cross|Word

Flipart

Typeshift

SpellTower

Really Bad Chess

A natural inclination when faced with a loved one’s dementia, said Kate, is to isolate. “It can feel safer at home with comfort objects and where you can keep an eye on things. But it starts to feel like that movie, Groundhog Day, the same thing over and over. The caregiver has no idea how worn down they’re getting.” She emphasized the importance of maintaining dignity: “I never talk down to David, but sometimes it’s frustrating.”

CEC is the only program of its kind in our area, and is grant funded. “We’re seeking sustainable funding,” said Donna Bigelow, whose multi-faceted job includes visiting people at home to assess their situations. Some local senior centers offer programs where caregivers and their loved ones can share a meal, listen to music, and socialize with others. CEC allows caregivers to leave the premises, which can be a godsend for those doing round-the-clock care. One participating CEC caregiver said, “It’s five hours when I don’t feel anxious.”

Kate has a message for those facing “the lonely, hard, and scary” experience she knows too well: “Put your pride aside, or it will consume you. Stimulation is key. You have to get out.” She added, “Once you accept the situation and surrender to it, you become less angry and more solution-focused. Of course, there’s still grieving, but it becomes more doable.” Kate finds that when she picks David up from CEC, “residual benefits go beyond the five hours. There’s an afterglow, one that lasts. It’s a gift.”

Eveline MacDougall is the author of “Fiery Hope.” To contact: eveline@amandlachorus.org.