A social worker and self-described adventurer, Ethel Sandra “Sandy” Rosenbaum was passionate about helping people and seeing the world. Her husband of nearly 30 years, Joel Berman, was initially reluctant to travel, but Sandy won him over with her enthusiasm.
“We visited every continent, even Antarctica,” says Joel, a native of Boxford, Massachusetts.
Everything changed in 2012 when Sandy was diagnosed with myotonic dystrophy at age 61. Then, five years later, she was diagnosed with frontotemporal dementia.
As Sandy’s primary caregiver, Joel remained steadfastly by her side, even after making the painful decision to move her to an assisted living facility in 2017 as her health declined.
“Being unable to do anything for her was heartbreaking,” he says. “It went from the two of us facing the world to me being completely alone.”
The director of Sandy’s assisted living facility invited Joel to connect with other caregivers by participating in the Alzheimer's Association Ride to End ALZ Massachusetts/New Hampshire, which challenges cyclists to pedal up to 100 miles while raising critical funds and awareness to advance research. But on June 21, 2017, just days before the ride, Sandy died of complications related to dementia. Grief-stricken, Joel considered dropping out, but ultimately he decided to stand up to the disease and forge ahead.
On the day of the event, Joel asked to say a few words to honor Sandy, and other participants rallied around him to offer comfort and share their own stories. In a moving show of support, everyone backed up at the start of the ride and encouraged Joel to go first.
Inspired by the experience, Joel worked with the Association to create Sandy’s Starters, a group of caregivers who all recently lost someone they love to Alzheimer’s or another dementia, who begin the Ride to End ALZ Massachusetts/New Hampshire by leading the other cyclists over the starting line.
He urges others to advance the fight against Alzheimer’s however they can. “I contribute to research so, someday, people won’t have to go through what I did.”
Learn more about the Aspire Society and ways you can get involved.