Share your Story: How one family found joy in the journey with dementia

Bonnie is no stranger to dementia. Her grandmother faced a 15-year journey with the disease that came to a close in 1995. Her mother faced undiagnosed memory loss for several years before suddenly passing in 2011. And her father, David, lived with dementia for 15 years before passing away last summer. Each of these journeys brought many challenges along the way, but what Bonnie remembers most, and the most important message she would like to share, is that so much joy is still possible when living with dementia.

Bonnie’s father’s journey with dementia progressed slowly. His wife cared for him for many years, but as things progressed Bonnie eventually began splitting her time between her home in Chicago, and her parents’ home in Ann Arbor. She would split caregiving shifts with her three brothers, two of which lived locally, and one who resided in Connecticut. Once their mother passed, Bonnie and her siblings were the sole caregivers for their father, along with professional in-home caregivers for around five years. Eventually, they moved their father into a memory care facility.

Bonnie describes these years with her father as a true blessing, “My siblings and I are just grateful to have had that time with Dad.” When the disease was at its worst, and her father had lost hope, Bonnie remembers cherishing every moment she still had with him.

“Dad was always really focused on family,” Bonnie shared. “He loved concerts, singing, and playing games.” To keep their father active and engaged, their family spent time together going to free concerts around town, playing Rummikub and chess with grandchildren, attending Mud Hens games with family, and singing songs their father remembered from college. “He was still the same person,” Bonnie shared, “so we would opt to do things we knew he would enjoy, and it often brought a smile to his face.” Bonnie recounts this joy as she remembers her father tapping his foot and slapping his knee gleefully at a local concert. She also shares memories of him mixing up the rules to chess while playing with his grandson, and the grandson cheerfully responding that they were “playing with Grandpa’s new rules now.”

Even when things grew difficult, Bonnie and her family always tried to meet their father where he was. As the disease progressed, their father eventually lost his speech. For joy, Bonnie shared that he would sit on the porch and watch the world go by. He could bond with his grandchildren in a very unique way, bringing Bonnie and her siblings genuine happiness.

In Bonnie’s words, “This disease robs us of some amazing people, but I want others to know that we should still treat them with dignity and as the person we have always loved.” Alzheimer’s disease is known to take many things from the lives of those affected. But, if we let it, it may allow us to see life through a different lens – one that brings us unexpected and unconventional joy.