He says to the snow, ‘Fall on the earth,’ and to the rain shower, ‘Be a mighty downpour.’ –Job 37:6
(LINK) Man…The Carpenters. Amazing vocals. Lost too quickly.
Hi all! Hope you had a nice, long weekend as we (sort of) did with the snow days. I will admit, though, a bit of sadness for the kids who no longer have snow days because of the pandemic’s forcing Zooms on society. Alternate Means of Instruction means that school is sooooo important that having a bit of reprieve from it is so disruptive that the world comes to an end. I, for one. was refreshed with a break now and then…and still am.
Anywhooo, this weekend is still part of my training for my foolhardy windmill tilting shark jump in June. The exercise doesn’t just happen despite the ole Netflix time albatross calling me. But a funny thing happened as I was jogging through the slush all weekend:
10 Things You Can Learn About Dementia From a Snowmageddon Run
- 10. Blank Canvasses Seem So Innocent– I almost felt bad running through the edge of the cemetery as the snow breaker. It is so pretty. It is uncluttered with the junk of everyday life. In fact, many of the tombstones were completely covered. No trash. No dog poop (yet). No flower bouquets strewn about like broken dreams. Just white and beautiful. Tranquil. Peace. A weak Earthly representation of heaven, with its lack of the spottedness of sin. In dementia, this can, for some fortunate folks, be a reprieve. Mom is at the end of her snowy road although, like this picture below, the actual end is nowhere to be seen. However, she is at peace. Memories erased like the wind-driven snow erased the sadness of the stones and the strewn cemetery flowers. No more pain of loss. No more obstacles. Just peace. I am hoping to keep mom bundled up as best I can, protecting her from the elements of pain until she is gone.
- 9. Running in the snow is very hard (for me at least…). There are hidden pitfalls everywhere. Every step makes me nervous. My shoes, my beloved Brooks Adrenaline models, are finally wearing out. I roll my ankle over a bit as I run and the spot where I do so is slick like the tires on my cars (two of which who probably need front end work.). Traction is weakened. Add to that the very resistance of the snow. That makes me think of this scene from Rocky 4……..although I look much more like Paulie than either fighter! Never a comfortable step. No sure footing. In dementia, this reality is ever-present, especially in early- to mid-stages. Trip hazards everywhere. Unsure footing. Not knowing where to step, and not cognitively tracking well enough to decide correctly. Falls happen… a lot. Isolation ensures. It is safer to just gaze out at the hazards of getting lost, getting hurt, or perhaps the worst, getting embarrassed than to brave them. It must be dang hard. 🙁
- 8. Ruts can help until they hurt– One of the interesting parts of running in the snow is following the ruts. (Note: I am pretty new to this running in the snow and all conditions stuff. I am kind of a wuss, mind you.) I run in the ruts because I can see what’s underneath. Someone has already treaded this path and has shown the way (WAIT…uhhh…err….trod? prodded? trode? English is also hard, even for a non-demented brain). Sure their way may now be packed snow turned to ice…but it worked or you would see a corresponding accidental (fallen) snow (fallen?) angel off to the side where the poor sap fell. (Note: I use fallen twice because the angel fell and, had he swore he would have proven to be a fallen angel.) Ruts help. They are prematurely familiar like deja vu. Folks struggling with our disease can relate. They cling to the paths of the familiar and tend to thrive there. They can eliminate the need for decision-making so they can reserve their cognitive reserve for things they NEED to know. Thus, their brain can rest. AND, it badly needs the rest. Please try to give them rest by finding a routine and protecting ti like the precious jewel it is. Otherwise all you are doing is clearing the top of the ruts and making it harder to find footing.
- 7. It is interesting to me to find places with no snow and wonder why. I jogged over the the Southwest Baptist University Bearcats’ football stadium for a portion of my run yesterday and discovered a nearly untouched field except one area as shown below. It wasn’t even damp in may spots. Hmmmm?!?!? Was their a wind-driven snow break? Did someone come by to shovel and say “Forget this” after one section? No tellin’. I did feel like laying on the ground and making a track dirt angel, though. It was nice to be on dry land, even for a minute. I suspect it was warm too. I know the chances of falling were dehanced. (OK English Nazis…if there is an enhanced, there SHOULD be a dehanced…and this is my blog, so dehanced it is. 😉 Wait…maybe unhanced would suffice? I don’t care what the red squiggly line is trying to bully me into.) My mom had some reprieves from the winter too. In early- to mid-stage days, mom would, for no apparent reason or rationale, have days that she was much better. Here are a few of articles in which I mention them in mid- to late-stage: LINK and LINK and LINK. These islands were great until they were actually worse when you reenter the snow-packed tundra of the shivery cold brain snow. One day things were great. We played the piano (I use the term we loosely.) The next day I would arrive and find her topless or missing her teeth or crying. But then I would arrive to the melodious sound of her playing the piano, and the Sweet 17 singing along in harmony. The respites were wonderfully terrible. BUT, I would kill for another…
- 6. Tracks on the Frisco. One of the interesting parts of the day Friday was running on the trail after someone drove on it. I am not sure whether it was a car or some sort of utility machine, but someone did. It left side lines that helped me know where the trail ended on each side and was kind of helpful. It did compact the snow, though, into ice, making that section as slick as snot. Meds can be this way in the dementia world. First, allow me to reiterate this: THERE IS NO CURE FOR DEMENTIA. NONE. ZIPPO. NADA. TAKE ALL THE CURES IN THE WORLD…AND SUBTRACT THEM AND THAT IS HOW MANY ARE LEFT. 0. 0X0 IF THAT HELPS. (Exhaling.) There are some meds that DO help symptoms. Two primarily: Cholinesterase inhibitors and Memantine. Some are tied to specific symptom relief that fall into the anti-anxiety/anti-psychotic classes. Others help with sores and the like. There are meds all over the place. Aducanumab, the newest approved drug, has some potential help in, for the first time, actually addressing a part of the suspected pathology: removing Beta Amyloid plaque…but it remains to be seen if this truly helps more than the potential brain bleeds and guaranteed wallet bleeds ($50-60K…although this seems to be going down.) may hurt. Some drugs help until they stop working or until the patient advances beyond their ability to do so. (We missed mom’s window for these drugs and I still hold in lots of guilt to this moment.) Others Help for a while, then the dose needs to be increased and increased and increased…until the patent is exhausted. Some help and hurt like a ice-covered track that guides you right into the ditch. I am NOT anti-medicine, anti-vaccine, anti-science. Just be aware that they are like flossing spaghetti through your shoes some days and some days there is an Italian stingray in the shoe to boot. (pastinaca is Italian for Stingray.) Be aware and always mindful.
- 5. There’s water under that there snow! (Yelled in my best old prospector dialect)- It is interesting to see and hear water FLOWING under the snow. It looks solid. It feels solid, but looking closer, there is liquid flowing like a little river a foot below the surface. You would think it would thaw from the top down, but the warming of the Earth apparently does more than the sun. Science teachers and experts, help me out here. 🙂 Hmmm. You never quite know what is right under the surface, do ya? Same with your loved one. A couple things come to mind. One- Be careful in the early- to mid-stages. Make eye contact, speak peace, and watch verbal and non-verbal cues. Know triggers. Sometimes the sweetest little damsel in distress turns into Mike Stinkin’ Tyson. Be on the watch. Don’t assume they could swing at you…but don’t assume they won’t either. Now, on a more positive not, don’t talk about your loved one in front of them like they are nothing more than a blender or a desk lamp. Don’t talk like a baby. Don’t yell (if they used to have decent hearing). You really don’t know just how much they comprehend. I would say to err on the side them knowing more…much more…than you can see on the surface. Speech and clear communication go pretty quickly, but who is to say that there isn’t a brook running beneath the snow? Since we don’t know, act accordingly and love fiercely.
- 4. Sometimes the slick is better than the not- I really liked running in the snow. It is certainly different and somewhat easier than running in extreme heat, at least for me. I don’t like my feet wet while I run, so there’s that, but I do like the extra cushion. Find the good in every day with your loved one. Every season of this disease has some still good moments. Search them out. Fight the temptation to give up or to get depressed. It is natural do give in. I get it. I am a “just right” kind of runner. I thrive at about 65 degrees with partly cloudy skies. However, we aren’t given those every day…and we would probably get bored and complain anyway. Just work with what you have and eat the meat and spit out the bones.
- 3. I love seeing dog prints on the snowy trail (see the previous pic again). Pet therapy is great on the trail. I often wish I had man’s best friend with me when I run. I could try to take Silver or Flashlight on a run, but they would be indignant and claw then feed on my face if I tried to remove them from their window perches. I love dogs. 🙁 Pet therapy works wonders for the anxiety and depression of many dementia patients. Here are a few links: LINK and LINK and a sciency LINK. Even real feeling, stuffed pets can do great things. Affiliated LINK. There is something about a pet that jogs the memory and, at the least, brings a smile.
- 2. There is a better day coming. Eventually this snow will all be gone. There will be memories, great and terrible, that you will keep with you forever. Stop and live in the moment. The snow will be gone before you know it. And, minus a cure we are desperately seeking, so will your loved one.
- 1. If life gives you snow, write in it. OK sicko guys, I mean write with your feet. 😉 I left this on the track the the football field for everyone to see. It will be there for a day or two, then be gone, other than for the nearly 10k at our little blog. Find ways to share your story. Help someone. Love someone. Pray for people and a cure. Donate to causes trying to help. (Cough, cough. 😉 ) Join AIM and advocate for folks with dementia. Join Trial Match and see if there are clinical trials you would be comfortable doing. Nobody is going to poke you without you knowing lots and lots first. Some studies are just surveys or websites to review. I am going to Vanderbilt (hopefully next week) to begin one important such study. I am in 3-4 others too. There are many, many things you can do. Join/Start a support group and tell your story. If you can’t find ways to help, holler…I will put you to work. 🙂 These things all help move the needle to what we ultimately, desperately want: a snow white Promise Garden Flower…and a cure.