Posted on the 4 year anniversary of mom’s placement (October 2022)
“You do not know what will happen tomorrow. For what is your life? It is even a vapor that appears for a little time and then vanishes away” (James 4:14)
Yesterday marked 4 years my mom has been in a nursing home with mixed dementia. She was diagnosed with a “mild case of dementia” in 2009. She got worse, then flattened out, then got worse then flattened out then….ok, you get the point. This is pretty common in the type of dementia mom has (see below), but it makes for some challenging times. Four years ago, the day after this picture was taken, we had no real choice but to place her in full-time nursing care.
She has been there ever since. Until March 2020 when we were pandemicked outside at the window for “window visits”, we visited every day. I blogged at Digitalcornbread.com every day as well. The time we were ushered out by the pandemic, we spent a period of time I referred to in my blog as Shawshank Re:Dementia.
So we sat around in despair, knowing that there is no cure and very few even slightly useful treatments. I googled around and the consensus was that there is no cure and that there may never be…so eat and drink and be merry for tomorrow they shall die. Even many doctors refuse to try to diagnose the disease because there are so few good treatment options that they feel empowered to hide the info so the person can just not think about it. You know…like when hiding under the sheet protected us from the Boogeyman. Yes, like that. It is foolish to tilt these windmills.
Partially out of a need to “do something, anything…”, and partly for my own mental health to manage the stress, I started studying. Knowledge is empowering. I soon discovered that I knew little, but some folks know a whole bunch…and I knew right where to find these folks. I started attending clinical research studies at 3 of the leading Alzheimer’s Disease Research Centers (ADRCs), KU Med, Washington University (St. Louis), and Vanderbilt. While some of these studies have been uncomfortable, I can commend them to you as a viable way to both help and feel better. See, I am a fixer. I fix things for a living. But this problem seems, at times, unfixable…until you rub elbows with a brilliant windmill joust-carrying scientist or two and see the strides that are being made against these Windmills. It is the fastest growing cause of death in the top 10 causes, and tens of millions more will have it over the next decade, BUT things ARE happening in the last few years. They now have biomarker tests that can predict Alzheimer’s through blood work, only discovered in the last 2-3 years at WashU, possibly partially discovered with a squirt of my donated cerebrospinal fluid and/or blood. They now, even this month, released some excellent findings about a drug, tested at WashU as well, called Lecanemab that, the new blood tests and other tests show seems to have potential to slow the early progression and actually extend life, something previous, high-profile drugs couldn’t prove successful in. This is both Earth shattering and a camel’s nose under the tent for more and more findings like it!
But I don’t have a horse in that race, some might say. I don’t know people with the disease and have bigger windmills to tilt/fish to fry. A couple of thoughts:
- If you don’t know anyone yet, you will. Trust me.
- It is widely believed that some of the same pathogenesis/disease origins for dementia also relate strongly to Parkinson’s Disease, ALS, many other big diseases that relate to the brain and the nervous system. Cures and treatments may very well overlap.
So my point here is not to toot my own horn. I prefer not talking about such. Give me some social media memes or Netflix binge conversations any day! My point in posting this is to remind you all that your work in this dementia mess matters….a lot! When we first heard this diagnosis, we had the “Deer in the Headlights”/”Did you see how expensive gas got today???” glazed look. We were clueless, even though our grandma died of the disease a decade before. You can help by educating yourself and your seniors on this topic early and often. Most likely any new drugs that are developed will demand early detection. The longer someone waits to be diagnosed, the more brain mass is lost and the harder/faster the struggles become. Always encourage talking to a doctor if you notice Warning Signs.
Here are three good places to get started:
digitalcornbread.com (not because of my smarts…that ship sailed a long time ago…but for my passing to you reliable sources of info in the many, many links I add to each piece. If it is underlined in my articles, it is a good site and not a sales pitch or a spam thing. 🙂
You can also help by continuing to give grace when I am gone getting something poked and/or prodded, including the one this Thursday. Here is a picture from my last set of studies:
Studies like this probably aren’t for everyone…I get that. A couple of other ideas of ways you can help:
- Donate your organs when you are gone…but donate your brain to a ADRC. They need brains more than the Walking Dead…
- Attend a Alzheimer’s Association class or host one at your location. I can hook you up. 🙂 Learn…and share what you learn
- Be aware and offer help to caregivers.
- Join the advocacy wing of the Alzheimer’s Association and/or talk to your reps about funding. It will take truckloads of cash to find a cure. These smartypants folks studying the brain are expensive!
- If applicable, prayers for a cure are appreciated too. 🙂
If you want to donate money, I will be shilling my Runnin’ Til I’m Purple 3 starting in December. It is called Searching the 4 Corners for a Cure and chubby ole me will be running a whole bunch in each of the 4 corners of the state in 4 consecutive days, then maybe in Jeff City on that Friday in June unless I assume room temperature in the process. (It corresponds with the Alzheimer’s Association’s Longest Day events and is around the summer solstice. Details coming soon…) I need to get to work trainin’ again. 🙂
Until then, we Tilt Windmills, one windmill flapper at a time (I obviously need work on my windmill verbiage…).
Thank you all! 🙂