Navigating the Uncharted Waters: My Journey Through My Mom’s Dual Dementia Diagnosis
My mom had both vascular dementia and Alzheimer’s. I wish that had come from a formal diagnosis earlier in her disease progression. Instead, it was a slow awareness on my part, following a series of unfortunate events.
In 2015, mom was rushed to the hospital with trouble breathing and taken directly into surgery. Trouble breathing wasn’t new, she had COPD from a lifetime of smoking. And a progressive “crankiness” with the world accompanied it. But in this case, she couldn’t walk more than a few steps. Turned out she had pneumonia and empyema of her right lung (“orange peel” around it that made it impossible to fill with air). Following a successful surgery she rebounded and was full joy. I wish I had known to lean in and spend more time with her during this time. She had moments of forgetfulness (remembering doctor’s appointments, keeping track of checks that she had written), but she laughed those off. And I thought those were “normal parts of aging”.
A year later, mom joined us on a trip to Scotland over the holidays, at the end of our daughter’s semester abroad. This was the first time that I had “lived” with my mom in years. And it was on this trip that I slammed into the 10 Warning Signs of Dementia – without even knowing those existed.
Each “symptom” could be explained away on its own. But it was in this travel adventure that they all collided. She had challenges with her vision (stepping off of curbs) and not remembering where the hotel was. Her grumpiness returned, connected to moments of confusion. This disorientation was likely tied to being in an unfamiliar place, something that had never bothered her before. She misplaced her room key (a few times). And the number of times that she had trouble finding the right words to express herself became much more noticeable.
Mom was a master at coping – until she wasn’t. We spent the whole trip making sure that someone had an eye on her at all times, while ensuring she had no idea that we were watching. Mom was fiercely independent and she wasn’t going to give that up without a fight.
The next year brought a stroke, which accelerated her dementia. A “formal” diagnosis came a few years later, and only became known to me because I happened to read her medical chart. No physician ever uttered the words. And by that time she was moderate to severe and had lost the opportunity to get treatment, participate in clinical research to slow or reverse her decline, and to make decisions for her own care.
Despite that, I think she knew and prepared the best she could, legally and financially. After she passed away, I needed to get proof of when I had been added to her bank account as a signatory as part of the estate probate process. In reading the documents provided by her banks, I realized we had done that on Valentine’s Day 2017, just weeks after the trip to Scotland.
There isn’t a manual to guide us in this journey and each of us (nearly 12 million Alzheimer’s family caregivers in the U.S. alone) are left to figure it out for ourselves. That is why I’m excited to co-found AllzWell, to provide a personal companion to other caregivers and make their journey smoother than mine.
