Twice a week, at 6:30 in the morning, Fred Schaefer and other Fairfield history buffs head to the historic Greenfield Hill Cemetery to pull weeds and clean gravestones – some of those are stones from the Revolutionary and Civil Wars. Fred takes great pride in his hobby of preserving memories for others, as a brain disease threatens to take his own memories. The 72-year-old was diagnosed with Alzheimer’s in early 2024. He and his wife Beth, who are long-time Greenfield Hill/Fairfield residents, are navigating this journey together.
“I started noticing lapses in his memory several years ago,” Beth says. ”He was repeating things over and over and forgetting to drive to a birthday party when the gift was right on the front seat of the car. He is now losing his ability to think through things and solve problems.”
“You don't even realize the toll it's taking on you some of the time. It's nasty in that regard because it affects so many parts of your life. Memory was so important to everything I did.” Fred says.
Fred is one of 80 thousand people in Connecticut living with Alzheimer’s disease and Beth is one of more than 100 thousand dementia caregivers, many of whom are unpaid family members. The diagnosing doctor at Yale Alzheimer’s Disease Research Center (ADRC) connected them with the Connecticut Chapter of the Alzheimer’s Association, which offers care and support to families all over the state.
Beth says she got resources quickly during a conversation with Jen, a dementia care consultant at the Association. “You have to have experts, you need to put together your team of family and friends and Jen is a key member of the team. It is priceless to have that. I do not have the answers, but I have the people who can help me get the answers.”
Figuring out how to communicate when your loved one is having a hard time, going into their reality because they can no longer join you in yours, and having patience are critical skills for caregivers to learn. Beth is also learning that she needs to take care of herself as her husband’s health changes. This next chapter is about being “less wired”, she says, knitting and doing jigsaw puzzles to calm her mind, and working with a personal trainer. They are also thinking about where they will live when Fred needs more care.
Fred shares his frustration with this disease, “It's a giant gut punch, you can't tell sometimes when you're deteriorating. I just don't know how to react.”
“I have accepted that this is what it is. It is still scary, what I need to do is not my natural way of being,” Beth says. “I know the resources are out there, I am going to figure out the best way to cope and make it as pleasant as possible.”
Sometimes Beth and Fred take sandwiches to the same Fairfield cemetery Fred visits with his friends to clean. The married couple sits, has lunch and creates more memories, while holding onto theirs as long as they can.
November is Caregiver Month, a time to honor caregivers and focus on caring for yourself if you are a caregiver. The Alzheimer’s Association was started in 1980 by a group of caregivers and has grown to an organization with more than 70 chapters across the country, serving the 7 million Americans living with Alzheimer’s. The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. In Fairfield County, we have in person support groups in Ridgefield, Stratford, Bridgeport, Shelton and Milford. We offer Virtual Caregiver Support Groups in Westport, Stamford, Greater Milford/Orange. Please go to alz.org/crf or call 1-800-272-3900 to find a group that works for your schedule. The Association also offers programs for those in the early stages of dementia, including talks at the Fairfield Museum, tours of the Aldridge in Ridgefield, trolley rides and picnics.
You can help other families in our state by donating to the Connecticut Chapter at alz.org/ct. Money raised helps operate the 24/7 Helpline 1-800-272-3900, which you can call with any questions about dementia at any time. The Chapter also has robust advocacy efforts where people tell their stories to lawmakers on the state and national level to create change. The Walk to End Alzheimer’s, The Longest Day and the Celebrating Hope gala in Fairfield County are just some of the ways the Chapter raises funds to serve people living with dementia, their caregivers and those concerned about their brain health.