Santa Claus is Coming to Town...Are you Ready? (and a study update)

Posted 12/15/2021

“Rejoice with those who rejoice; mourn with those who mourn.” Romans 12:15

Hi all! Happy Monday. Uhhh…errrr….I guess it is actually Wednesday. Missing my Monday at the Cornbread table always throws me off. I was, as I mention too often, involved Monday in a clinical research project, this time at the University of Kansas Medical Center. While I don’t like KU’s sporting teams, I DO like their research projects, especially as they pertain to dementia/brain and/or aging. Their folks, just like WashU, are very, very nice. I felt at home immediately.

This study I am involved in there is looking at the pros/cons of Statin drugs that tens of millions rely on to fight high cholesterol. As a reminder….and if you remember nothing else, remember this… “What is good for the heart is good for the brain. And I must add, the opposites are also true.” The study particularly looks at muscles and movement and pain and is partially designed to see if these drugs slow people down from exercise, which would be counterproductive. In the last couple of days I have been poked, prodded, sliced and diced a little, but they were outstanding and I believe strongly that their research will help seniors age better and will do some amazing work in heart and brain research in this area. Specifically this visit, I was extensively tested as a baseline in dozens of areas….and now I started today taking a 20 mg dose of either a Statin drug or a placebo of the same size. I took my dose about 2 hours ago and immediately grew a horn from my forehead and developed an intense desire to vote three times for President Biden! OK…maybe not. That is similar, though, to the cockamamie stories you hear from conspiracy theorists about clinical trials (and vacc1nes, for that matter…but I digress, sort of. No, the vacc1ne doesn’t inject trackers in you. Not only is that kind of dumb, but it is also completely implausible. They get batches of vaccines. How would you individually separate the little trackers??? Come on. Replace this energy with more important work, like finding a live Bigfoot! I really want to see one up close!). {Back on track…straightening imaginary tie) Clinical trials are the source of skepticism for many, many folks. I get it. I really do. There are trust issues that go back 50-100 years about how our always benevolent government/science community did terrible things for money/power/even racial genocide. But that was before getting caught multiple times, before the internet’s ability to destroy a company in a second, and before we developed sound oversight. Is the science community perfect? Not hardly. However, they are doing some great research fighting disease…most notably our little topic. There are nearly 3 dozen ADRCs out there (Alzheimer’s Disease Research Centers) that are vetted well and staffed by some of the most amazingly gifted and talented and downright smart folks around. If you set me with my MBA in a lineup next to one of them on one side and an eggplant on the other, my IQ would be much closer to that of the little purple veggie…or…uhhh… is it a fruit? Crud…it IS a fruit! See what I mean…these folks would have already known that. So, trust your gut…but be strong and courageous…we need more folks being tested if we are to ever render obsolete this subject and #EndALZ once and for all.

Bonus note: If you are a person of color or a member of the LGBTQ+ community, know this: You are extremely underrepresented in these studies. We need you! I empathize and sympathize with you here. You have been the target of racist/bigoted/homophobic and every other similar term, even (historically) by this research community, in the recent past. Here is one of several large examples. The problem is, your communities get dementia at a much higher rate than other groups and seek treatment less and/or slower. We need your participation to find out the root causes of these differences, to better tailor a cure that covers all people groups, and…because you matter. Want to look into some studies…dip your toe in the water, if you will? Here are two good places to start: LINK and LINK. Some are invasive, some are a simple questionnaire or a website to visit and review. There is something for everybody! Take a look today.

Well, welcome to the blog. What was going to be a short intro followed by a smorgasbord of wisdom about caring for a loved one during the holidays will have to partially wait until Friday. I have just a quick outline and we can pick up where we left off Friday. Fair enough?

Tips on Dealing With the Christmas Break to Routine (Pithy Version)

Simplify plans- Keep your plans simple. The more complex the holiday plans, the more you will be distracted and the more your loved one with dementia will grow restless and/or anxious.
Break into smaller groups? Consider successive weekends for a visit to celebrate the holiday. That would keep the numbers smaller and reduce the overwhelm of too many inputs/too much to process.
OR, rip off the Band-aid– If it seems appropriate, you could try to have one larger visit and have it be a bit shorter than normal. Perhaps between visits with finger food? The problem with long, large gatherings is it may take days to “recover” and the holidays should be a time of joy and reflection, not a time of recovery.
Music/senses– Few things job the memory, brighten the mood, and make things “easier” than a gentle playing of favorite music and the smells and sights of the holidays. While you may not meet expectations as far as how much can be identified, just having the sights, smells, and sounds of the holidays around can brighten moods. Don’t overdo it…be sensitive to cues.
The Gift of Time-When asked “What would (your loved one) want for Christmas and what would YOU want for Christmas?”, remember that time is great. Visit an extra day and bring some music or a scrapbook (as a matter of fact look at the pictures, not a quiz…no “Do you remember when we X”…instead “Look, this is when we X”)
Reduce clutter, promote safety– Holidays are known for their clutter. Decorate carefully and in such a way that it doesn’t lead to a fall hazard. Keep footpaths clear (for shufflers especially).
Be in the moment, but get some pictures and video– Like always…be in the moment. Enjoy every minute as best you can. Feel free to take some pictures and video, but focus more on the now. The holidays can be a refreshing time….but it may take some work.
Love, serve, and learn– Love your loved one. Serve them all the more even when they don’t seem to need much. Learn from cues and from face gestures and write down what works and what doesn’t. You can use that when there are no parties or visitors.

What tips do you have?

Update: Mom is about the same. We discovered the merits of washing her face before lunch as a way to help her be more aware during meals and in visits. Plus she likes it. 🙂 A win-win. Just keep it at a comfortable temperature. 🙂