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Caregiving a spouse with dementia – Millie’s story

Family caregivers have a hard job. Nobody knows that better than Millie*, who took care of her husband with dementia for 16 years. “We were married 56 years,” she says. “What else do you do?”

Millie’s story is one of highs and lows. She watched her husband grow weaker; he wasn’t able to speak for the last five years. But they figured out how to communicate without words. She was fortunate to be able to have home health care during the day. But she also says she lost “a decade of my life.”

Millie found the Caregiver Support Group in 2010. Facilitated by Stefanie Small, director of clinical services at JFCS, the Caregivers Support Group is a safe place to express fear or sadness or frustration. Members share stories and tips from their own experience – and tears and hugs. As Stefanie says, “What goes on in Group stays in Group, and nobody is here to judge.”

In the end, Millie’s husband could not swallow and struggled through his last eleven days without food or water. After his death, she went back to the group. “I’m here to tell you you will survive this,” she told them.

In fact, since her husband died in 2016, she is still coming to group meetings!

“I asked myself why I was still going,” she said, and thought about quitting. Then another woman from the group called her and thanked her for some recent very valuable advice. “I realized that my experience could help a lot of people who were in similar situations.”

Caregiving an aging population is falling more and more to family members. Institutions can be prohibitively expensive, and nobody is keen to “put mom in a home,” no matter how nice. But tending to the every need of parents or spouses who are seriously ill and/or suffering from dementia day in and day out takes its toll.

Millie says a common issue for many participants is guilt. Why him and not me? We said “Till death do us part.” She doesn’t even recognize me. How can I put the mother who raised me in a home? Stefanie assures everyone that their feelings are normal, and their struggles are serious.

“Rule number 1: Caregivers have to take care of themselves,” she says. “You can’t be of much use to anyone if you are burnt out and resentful.”

Millie says she knew she had made the right choice for her. And that Stefanie and the Group made a huge difference. She want to keep going to help other caregivers. But she says clearly that everyone’s situation is different, and nobody should feel guilty for whatever decision they feel they have to make.

The Caregivers Support Group meets monthly at JFCS on the 3rd Thursday from 1:00 – 3:30 pm, and is open to anyone giving care to an older adult. Free. Before your first session, please call Stefanie Small at 412-422-7200.

*Name has been changed to protect privacy and confidentiality