How Alzheimer's Changed My Family's Future in Unfathomable Ways

As National Family Caregivers Month comes to a close, it is just the right time to spread awareness of Alzheimer's Disease and how it impacted my family. At this time of year, closing out the Thanksgiving season and entering Christmas festivities, I am unconsciously taken to reflect on memories from those days.

Those days were painful yet also splattered with humorous moments. In the early stages, Mom couldn't recall that "we just had this conversation." Alarm bells quickly rang for me as her brother had early-onset dementia, taking him to an untimely death at the age of 59. But Dad and my siblings were not as convinced as I was. Sadly, Mom's neurologist did not give her the diagnosis earned by her symptoms. However, he had no problem prescribing medications to help mask the signs of dementia. As a family unit, we flailed with different perspectives, different approaches and different plans. What we all agreed on was that something was wrong with Mom.

Over the years of Mom's 13+ year battle with Alzheimer's, as Mom began to deteriorate more and more, and as her hidden sweet tooth came out to play, at a certain point, there was no denying that Mom had Alzheimer's (aka dementia). Had the National Alzheimer's Project Act (NAPA) been passed by this time, perhaps Mom's neurologist would have been more inclined to make a proper diagnosis. And perhaps my family would have been directed to an appropriate care plan versus our three different directions that did not allow us to move far.

Over the past decade, Congress has helped us secure robust increases for Alzheimer's and dementia research funding and advance critical legislation. This work wouldn't have been possible without the bipartisan support of NAPA and the Alzheimer's Accountability Act (AAA), both of which will expire if not reauthorized by Congress before 2025. That's why we need Representative Bill Foster to cosponsor the NAPA Reauthorization Act and the Alzheimer's Accountability & Investment Act.

Unfortunately, my story does not have a happy ending. Dad died 5.5 years before Mom as a result of the wear and tear of the caregiver lifestyle. (Dad was a brilliant man who, with all the mergers & acquisitions he contracted representing a major telecommunications company, likely figured he could conquer a neurological disease. He thought he didn't need any help, so he went at it alone. His body broke down as he stopped caring for himself while he worried about Mom.) Alzheimer's isn't stopping, and neither are we. I'm thankful for my fellow advocates and Members of Congress, especially Congressman Bill Foster, for his support of those living with dementia and their caregivers.