Michele Cook of Huntersville, N.C. began her collaboration with the Alzheimer’s Association roughly 20 years ago in Michigan when a colleague in the senior care industry suggested she join her team and help fundraise for the new local Walk to End Alzheimer’s. Fast forwarding to the present, Michele has worn many professional hats, but has stayed close to the Association’s work local to where she lives. After her family moved to North Carolina in 2011, she connected with the Western Carolina Chapter of the Alzheimer’s Association and is now involved with five area Walks and The Longest Day. Her consistent volunteerism comes naturally. “I am doing something I love and something I believe in. That part’s easy,” she explains. It wasn’t until a year ago that her fight against dementia crossed into her personal life and left her family celebrating Father’s Day in a very different way this year.
Michele’s father Chuck is remembered as the “life of the party”. Michele laughs as she shares, “He was always singing or whistling or telling a joke. He was a super happy guy. His goal in life was to make people smile, even though as his daughter, it often made me roll my eyes.” He was a family guy, through and through, never missing either of his son’s baseball games. He coached little league all the way through high school and made sure his daughter was a tried and true Tigers fan. These vibrant character traits eventually led the family to know something was wrong. “He just got quieter,” Michele says. “He would often jump into conversations after we had moved on.” What the family thought was a normal age related loss of hearing turned out to be Parkinson’s disease dementia and Lewy Body dementia.
Up until last June, Chuck was still driving, although Michele admits this might not have been the safest activity. His diagnosis came in the subsequent summer months and after a brief one-day stint with home care. He was admitted to a skilled nursing facility in August of 2019. This whirlwind disease rocked Michele’s family as they quickly rallied to provide care and support for both her father and her mother as a caregiver. Michele shares that she is glad she had the knowledge that she does due to her profession, but cautions that it did not fully prepare her to fight this fight within her own family.
Caregiving during normal circumstances is difficult. Caregiving during a pandemic is even more difficult. Michele remembers this spring’s dates clearly. “On March 5th, we went that weekend to visit [our dad] for his birthday. The next week, they shut his facility down to visitors. Mid April we knew the disease was in his building, two residents and one staff member. On April 30th my father was tested for COVID-19 by the national guard. On May 5th we got the call about his diagnosis. On May 8th he began treatment for pneumonia, and we signed him up for hospice,” she chronicles. The following Wednesday Chuck passed away.
Michele is quick to defend the community where her father lived. “They were so good to him. He was comfortable there,” she says. Their last words to their father were through the community window on the hospice nurse’s phone. To keep their mother safe, only one of her brothers was able to visit their father in person in those last weeks. The facility was unprepared for the pandemic, as we all were, and had not been given the resources to provide personal protective equipment (PPE) to family beyond cloth masks. Her brother luckily had a guest bedroom to quarantine in between visits.
Michele’s fight has not ended with her father’s passing. She honors her father by advocating for families in similar situations and by continuing to donate her time and energy towards the mission of the Alzheimer’s Association. First, the Alzheimer’s Association released policy recommendations to support long-term care settings during this pandemic. Michele advocates for the adoption of policies that would have helped her father’s community support their staff and residents. She also wants to make sure her father’s battle with COVID-19 does not go undocumented. It is important to her that her father’s death certificate mention this as his cause of death, so that his fight can be counted when discussing policy priorities at both the state and federal government levels.
Second, she continues to plan fundraisers that highlight the care and support services of the Alzheimer’s Association. To her, the most important part of the Association’s mission is education. “We need education to get rid of the stigma,” she explains. Michele advises other pandemic caregivers to “Let go of the regrets and know that everyone is safe. It is so important to be knowledgeable about the disease. You don’t even have to leave your house or shower, to take an education program [right now]. It doesn’t mean you’ll have all the answers, but it makes it so much easier.” However, she swiftly qualifies her opinion by clarifying ” but support services are also very important. Once [dementia] is in your life, there isn’t much you can do.” She then also highlighted the importance of the Association’s research efforts. In a recent television interview with Spectrum News, Michele talks about her family’s experience. During the interview Michele attributes the Association’s care and support programs as guide-points in her own journey.
As Michele looks back on her father’s journey, she maintains that “as sad as this story was, he was never sad.” She chooses to remember her father this Father’s Day as he was at their last family gathering- her parent’s 60th wedding anniversary last September. Pictured here, Chuck had just done something goofy enough to make half of the family members look away from the camera with distracted laughter.
Honor the fathers in your life this June by joining the Alzheimer’s Association’s multi-faceted fight against Alzheimer’s.
Attend an education program…
We offer educational opportunities for anyone interested in learning about Alzheimer’s disease and other forms of dementia. Education programs cover a variety of topics relating to memory loss and aging and are intended to help anyone with concerns or interest. During the month of June, Alzheimer’s & Brain Awareness Month, we are offering a variety of educational programs virtually. Join us for a free live virtual event.
Become an advocate…
Alzheimer’s disease is one of the most critical public health issues in America. This is why we are unrelentingly advocating for public policies that increase critical research funding and support all those affected. Now is the time to join us. Help persuade policymakers to make Alzheimer’s a national priority by signing up to be an advocate.
Join us for Walk Day…
Families facing Alzheimer’s and all other dementia need us now more than ever — and with your help, we can be there for them. Every dollar you raise through Walk to End Alzheimer’s allows the Alzheimer’s Association to provide 24/7 care and support while accelerating critical research. Register today for one of our 19 North Carolina walks to help those in your community and beyond.