Westford parish group provides support for dementia caregivers

WESTFORD -- At 3 a.m. one Christmas morning, an elderly woman packed a suitcase, opened the front door, and walked into the freezing darkness. Her daughter and grandson rushed to take her out of the cold. The four-degree weather didn't bother the woman, nor did the fact that she seemed ready to leave her family.

"You know," she told her daughter and grandson, "that front door was really hard to open."

She was diagnosed with Alzheimer's in February 2020. After living with her daughter and later her sister, she was moved to a memory care facility. When the daughter remembers what happened that Christmas, she tells it as a funny story. Caring for a mother with Alzheimer's feels like a marathon, she said. Seeing the humor in it helps.

"If you're going through that situation, you can laugh at that. Other people feel a little awkward about laughing at that, but it's what we deal with," said the daughter, who asked that her name not be used due to the sensitive nature of her mother's medical condition.

St. Catherine of Alexandria Church in Westford is where the daughter is free to tell those stories. Since June 2023, St. Catherine's monthly Circle of Friends meetings have provided support to caregivers of loved ones with age-related illnesses, primarily dementia.

"We can pray together," said parishioner Sue Gormley. "We can cry together. We can laugh together."

Gormley cofounded the Circle of Friends with Deacon Luc Lambert and Kari Decelles. The group is a place for caregivers to speak frankly about their struggles, their frustration, their guilt. Decelles described it as "falling at the foot of the cross."

"There's no holding back here," she said. "There's no, 'I have to say the right thing.'"

The Circle of Friends met on April 2, Holy Thursday, in a conference room whose large triangular window offered a panorama of wet, barren trees. Traditionally, caregivers would bring their loved ones, who would participate in activities in the next room during the meetings.

"There was a lot of times more fun going on out there than what was going on in here," Deacon Lambert said.

Every meeting starts off with a song. Today's was "Mandatum Novum," a Holy Thursday hymn. Deacon Lambert gave a reflection on Jesus washing the feet of Peter.

"We have to remember that Christ wants us to be a community, to love each other, and we have to do that," said one Circle of Friends member. "Sometimes, we feel like Peter, 'I'm not up to this.' But we ask God for grace."

The group is a source of practical information for caregivers. It's where one group member got the idea to carry cards that say "Thank you for your kindness and patience. The person with me has Alzheimer's" whenever she's out with her mother. Sometimes the caregivers receive advice from professionals that isn't helpful. Sometimes no one understands. Sometimes they don't know how to confront the death of their loved ones. They're not sure when the journey will end, or how.

"In our Catholic setting, we have hope for everlasting life," a group member said. "We believe death is not the end."

Gormley was a pastoral associate at Blessed Trinity Parish, which includes St. Catherine's and St. Anne Church in Littleton, when she had a fateful conversation with Deacon Lambert. Deacon Lambert was bringing Communion to a home where a husband was caring for his wife with Alzheimer's. Deacon Lambert wondered if the parish had a caregiver support group.

"No," Gormley said. "Why don't we start one?"

One woman shared that being in the Circle of Friends helped her accept that for her husband, and other people with dementia, "their reality is not your reality anymore."

"I needed help navigating it and talking to somebody who was in my situation," she said. "Because no matter how much people say 'Well, you know, I feel really bad,' they don't really know, unless they've been in your shoes."

Her husband spent the last year of his life in memory care. She visited him and had lunch with him every day. Moving him there was "a very hard decision," one that the Circle of Friends helped her make.

"I think making a decision to go into memory care is huge, and there's a lot of guilt," she said, adding: "I think that talking through it, especially from somebody who's been there and doing the same thing, is very helpful."

Gormley cared for her father in the last days of his life.

"At different times in our lives, we're all caring for people," she said. "Could be our children, our spouses, our parents. So it's something that I think can be helpful to us at many stages of our lives."

Deacon Lambert has found that the caregivers must mourn twice. Before the physical death of their loved ones, they see them lose their memories and their identities.

"These people are grieving the loved one they used to know," he said.

Deacon Lambert doesn't have to speak much during meetings. Hearing the caregivers share their stories is enough. After the recent death of his father, he found himself relying on the Circle of Friends for support.

"We've had people come into this room with really hard looks on their faces, and most of them leave smiling," he said. "So there's something going on here, for sure."