When Karen Henley’s husband Mike was diagnosed with Young Onset Alzheimer’s Disease at age 36, she thought it was the hardest day of her life. Unfortunately for her, harder days were still yet to come.
“I thought the day he was diagnosed was the hardest. Then it was the day he was hospitalized, then the day he forgot who I was, then the day I had to start feeding him,” she says. “This disease brings so many hard days and there’s another one always waiting in the wings.”
These “hard days” are the subject of a story the Westbury resident recently wrote for Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. This latest installment of the popular series deals with what life is like for Alzheimer’s caregivers and will be released April 22.
In her chapter, titled “The Hardest Day” Karen describes the many hard days caring for someone with Alzheimer’s brings. It was a long journey, as Karen and her children cared for Mike at home for 11 years, before he passed away at age 47 in 2012.
Karen was one of thousands who submitted her story and one of only 101 whose story was picked to be a part of the book.
“I’m so proud of that,” Karen says. “It’s always difficult to share my story, but it makes me feel like there’s something I can control and do through all the years of being helpless. The disease makes you feel so helpless but this empowers me. It feels good to know I could possibly be making a difference and that none of this was in vain.”
Not only has she shared her story on paper, but she’s also spoken on CNN and the Oprah show. For the past six years, she and her two kids have also gone to Washington D.C., with other Alzheimer’s advocates to meet with legislators and lobby for more funding.
And for Karen, the fight to find a cure for Alzheimer’s takes on even a more urgent call as the disease runs in her husband’s family. Her husband’s brother and mother both passed away from Young Onset Alzheimer’s and her two children, Courtney and Brandon, have a 50 percent chance of inheriting the gene.
“I’ll tell this story to anyone who will listen,” Karen says. “People need to know it’s not an old people’s disease, young people get it too and it’s destroying families.”
Courtney was nine-years-old when her dad was diagnosed, and spent much of her childhood taking care of her dad.
“It wasn’t easy, but it was the only option. He would have done anything for anybody, so we felt it was only right we did what he needed us to do for him,” Courtney says.
Growing up surrounded by the disease resulted in her and her brother being involved with advocacy at a young age. The two often accompany their mom to D.C. to help raise awareness and have organized fundraisers for the past several years. Courtney hopes to one day make a film telling the story of her dad and spread the word that Alzheimer’s isn’t just a disease that affects the elderly.
And though there is a chance Courtney may inherit the disease that has devastated her family, she says she doesn’t dwell on it, and never takes her time for granted.
“There’s nothing that can be done to prevent it, so I try to make decisions I would have made regardless. You learn very quickly that you should live life to the fullest,” Courtney says. “I try to do what I can, while I can and what I want to do while I still have the opportunity, because I don’t know what the future will hold. If nothing happens, great, but if it does, at least I can say I lived without regrets.”
Find out more about the Henley’s story at www.henleysheroes.blogspot.com
By Betsy Abraham