Blog Post
One Family’s Story of
Early-Onset Alzheimer’s
and Resilience
By Kristie Medley via Well Beings Share Your Caregiving Story
Roy, Kristie, Jayden and Braxton Medley. 
Braxton and Roy Medley
I wanted to share with you our story of Early Onset Alzheimer’s and how families like ours are falling through the cracks with no resources available.
My husband was diagnosed in 2021 after working at Toyota in Georgetown for 17 years. At that time, our son was 10 and our daughter was 13. He had switched from 2nd shift to 1st shift and began having difficulty learning the new processes. During the visit with our doctor to share our concerns, he failed the memory test and was immediately taken off duty from work. He went through a multitude of tests including a sleep study, CT scan, neuropsychological testing, and a lumbar puncture. I received the call in August of that year that the lumbar puncture showed the definitive diagnosis of Early Onset Alzheimer’s disease.
He was referred to Indiana University’s LEADS (Longitudinal Early-Onset Alzheimer’s Disease Study) study to track progression. Once per year, we have gone to Indianapolis for three days of rigorous testing to track progression to address gaps in current Alzheimer’s research. Our story was documented for an Alzheimer’s series on Medscape:
The first two years were manageable, and he was still able to drive until May 2023 and to be home alone when I needed to work or be out of the house. However, in the last 12 months, and especially the last 6 months, things have taken a drastic turn. In January, he had a major seizure, which is common in advanced Alzheimer’s, and was hospitalized for nine days. I have conducted extensive research and reached out to various organizations to learn about available resources. He was given a small grant through the Bluegrass Area Development District that covered respite care for a few months and supplies, which I used to help him attend adult day.
Then, on the morning of Friday, April 11th, he woke up and was unable to walk or even stand. He had to be carried downstairs by the local fire department to a hospital bed. He slowly started regaining mobility after about 3 days, but due to his significant care needs, I had to find a place for him in memory care. I had back surgery just two years ago, and this level of care is extremely physically demanding. I have been told for some time now, even by the case manager at the hospital that our only option is private pay facility care that ranges from $6,500 – $12,000 per month.
I have been trying my best for four years to be a wife, mother, caregiver, and employee and there are no Medicaid beds available in our city or surrounding areas. Roy and I have been together for 35 years and our children are now 15 and almost 17. Our lives have been turned upside down. My children are struggling with isolation and the impending death of their dad. I am still working, trying to emotionally and physically care for the man I have been with since I was 16 years old, and there are no resources to help us.
Thankfully, a grade school friend started a GoFundMe to help cover the cost of memory care. The fundraiser has generated enough for care in a memory care unit very close to our home; then I will be forced to re-evaluate my options.
Other middle-class families like ours are falling through the cracks and desperately need help. I recently met with one of our Kentucky senators to discuss our situation. I wish our government representatives would address this issue because for middle class families with young children, it’s just not sustainable.
Thank you,
Kristie Medley
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