Posted 11-4-19
Happy Monday, fellow digital cornbread consumers. 🙂
I had a wonderful Anniversary trip with my bride of 29 years this weekend just outside of Branson, Missouri. It was a welcome unplugging from the digital world we live in, replaced with a crackling fireplace and squirrels gathering nuts outside of our dreamy cabin. (Note: I highly recommend Cody’s Cabins near Branson, Missouri! Great little area and the owners truly thought of everything to make our time special!) Add to that the good part of “falling back” when we get to relive an hour of our early morning hours artificially as we fiddle with our clocks, and things were awesome. I approve of this fall back thing, but don’t talk to me at all about the whole spring forward fiasco when we are robbed an hour of sleep. Personally I like the idea of dropping the spring forward completely while keeping the fall back part!
“Mark, could you mow the yard today??? It looks like the Amazon rain forest!!” -Suz
“I would love to sweetheart, but it is midnight and I might wake the neighbors!” -Me
“But it looks more like high noon out there!” -Slightly indignant, but still beautiful Suz
“Sorry…clocks are science” -Me, sitting down to watch a Sham Wow infomercial.
This got me thinking, as most things do, about dementia. I quickly jotted down 10 ways the two seem to me to be married…
- It really doesn’t matter what the clock says for a patient with dementia. By late-early to mid-stage at the latest they lose all sense of time and place. Regular sleep schedules are replaced by Sundowners/Sundowning. Mom paced up and down the memory unit, searched for an escape route, gathered in a pillow case anything that wasn’t Gorilla-glued down… and did it all quite anxiously. Look at the previous link or turn back the clocks and look to the beginning 30-50 posts to see a lot of discussion of those terrible days. Think jet lag from going back and forth to Australia…but every day, twice.
- The disorientation we feel fiddling with our clocks is nothing compared to the disorientation of this disease. Can you imaging forgetting most things that you hold dear, such as names and playing the piano for mom? Me either. Add to that the lack of being able to express what is wrong in a meaningful way and it is easy to see the rationale for my zero star social media rating for this stinkin’ disease.
- Routine is super important, especially for early- to -mid-stage patients. Throwing off the schedule even a little sure messes things up. While I look forward to mom’s Thanksgiving meal November 21st, I know (and pray against) the mess that will be caused by this break in schedule/routine. Many more visitors (a good thing), moved furniture (a bad thing), anxious staff (a bad thing) and feeding off each other’s angst (a very bad thing). Come on, blog boy, an hour won’t make THAT much of a difference! It is worth the problems just for the more visitors part, but not by much.
- Mid- to late-stage patients lose fine motor skills with this stinkin’ disease. Mom could still play the piano quite well, all things considered, in the early stages, but has lost nearly all control of her fingers. It may take her a full minute to scratch her nose now in late-stage. And I complained that it is hard to turn the little grooved wheel to change back the time in my clocks. 🙁
- My car clock is finally right again instead of being an hour off!!! (…until spring) It is better to not argue about details with a patient with early stage memory loss. Agree to disagree in your mind. Making them upset while not changing their ability to remember details about something isn’t worth the fight.
- Have you changed your smoke detector batteries? Always change them when we change the clocks! This is a good memory aid! Similarly, refresh your emergency kit on 9/11 every year. We all need and use memory aids. However, when simple, day-to-day tasks such as bathing, how to cook breakfast, or things you have always known how to do require a written list or memory aid, it is time to talk to the doctor.
- Did you know some whole states do not participate in daylight savings time. In 2015, North Korea’s dictator rolled back clocks 30 minutes and established “Pyongyang time“, and they opted out of DST as a bonus. This is a reminder that nothing is universal in dementia. We break things into stages and want neat categories, but the disease is simply NOT that easy. There are general stages that can be observed, but sometimes patients “improve” and have setbacks that move them around. As you travel around memory units and observe, you will learn that trends are possible, but being dogmatic is not possible.
- Reasons/causes are all over the map. There have been several reasons why we must fiddle with our clocks ranging from energy conservation, wartime unity, wartime energy conservation, because someone else did it, for the farmers, or because Ben Franklin liked it. Similarly, there are all sorts of “causes” of dementia ranging from genetic to environmental to sleep deprivation to Parkinson’s to nutritional to others… There are as many causes as there are types and ranges of symptoms.
- Time keeps on ticking without regard to what the clocks say. Mom seems to be doing better now than 3-6 months ago and much more than a year ago, but the clock…her clock…is still ticking. We need better treatment options and a cure before her battery stops for good. It doesn’t matter if the VCR blinks 12:00 over and over all day, it is only right two minutes daily at that rate.
- Most people hate daylight savings time. Seven in Ten. All people who have dementia or have been touched by it hate it quite quickly. I would say it is safe to say 10 out of 10.
For now all we can do is complain to our congressmen about daylight savings time. However, in the world of dementia, we can advocate, we can love our family members who have it, we can raise money, we can help make it easier to stay home, we can serve them and their family, we can visit them in the nursing home, and a million other things. Complaining, while it feels good at the moment, isn’t very helpful. We have to beat this thing! And, maybe once we do, we will feel enough emboldened to get the government to stop messing with the clocks! 🙂
#EndALZ
Update: Mom had a good weekend. I look forward to swinging by to see her this afternoon.
Happy Anniversary to a beautiful couple. God bless you🌹
Thank you very much! It was a great time 🙂