Posted 2/27/23
“According to all that I am going to show you, as the pattern of the tabernacle and the pattern of all its furniture, just so you shall construct it.” -Ex 25:9
God is big into order and patterns and structure. He isn’t imprecise, nor Willy Nilly. I suspect He wired me and you to reflect this attribute and we tend to do so, in our fallen state, without even noticing. Take my miles on my car today:
Here is a piece I wrote one other time when I noticed a pattern in my speedometer in Tempo One…my old car that was recycles last month and I hope will be turned into a nice toaster some sweet day…
Patterns are everywhere if we look for them and they have some potential to help. Here are some thoughts:
- Dementia Whisperer- As Aphasia (difficulty speaking) takes hold in many of our folks, we have to learn to speak their language. It seems like to me that the non-verbal cues are still there even after the words get jumbled. Focus on those. The stay the same longer and this pattern can help us read between the lines. For example, when mom used to string together what is sadly referred to as word salad (there were a lot of words that seemed to be thrown into a salad shooter and shot out there), I would look into her eyes instead. Did she grimace? Did she show the signs of a smile? Was it light or heavy? If you offer an unsatisfactory answer, did she grown and attempt a follow-up? Sometimes, even later in the challenge, it really helped. 🙂 Is it perfect? Nope. Sometimes I would say something cute that was in response to something that didn’t warrant cute…. But it was better than ignoring or being condescending like some people do. She is not and has never been my child and I shouldn’t treat her as such.
- Eating- Mom is struggling these days with eating. No, thankfully she hasn’t stopped yet, but just remembering HOW to eat is a challenge for my mom. She tends to breathe in her food (see Aspiration Pneumonia), like many in the end stage do, and it causes everything from choking to pneumonia. Last week she had a “spell” caused while eating where she threw up and choked quite a bit. The nurses got her straightened out, but her blood oxygen was at 70. It took some breathing treatments to get her back right again…but she made it. This is one of the hardest parts of last directives. What life-preserving measures honor her wishes. This one stopped the pain and discomfort, so I feel good about it.
- Tables- One of the stinky things about the current medical system/employee crisis is mom gets new nurses every day. It is a revolving door. They do a great job, but do so with their brain tied behind their back. They never know the things a longer term nurse would know. Take, for instance, table placement. Mom has set next to the same people for 2 years or more. While the ship of mom caring about who she sits next to has likely sailed, 20+ other people in the dining hall are also comfortable sitting next to the same people too. It is a pattern in an unpatterned brainosphere….and it makes some sad and others mad. I suggested we draw a map and list everyone, but we don’t want this to be the hill we die on in a helping sense… So every day now, if the roulette wheel of care falls on one of the longer term nurses, they set where they belong. If not, chaos.
- Sleep- Mom has to be flipped, turned and propped to avoid bed sores. No magic here, but just something you should know when you get to this stage.
- Visits- I recommend a mix of patterns and non-patters as far as WHEN you visit. Get in a pattern, like we have, where you come every day to feed your loved one if possible. However, reserve the right and plant in the mind of staff that you MIGHT just come by at 4am for a mom-hug. Talk about scrambling like a grenade was thrown…when they see an early visitor it jolts folks back into work mode toot sweet. 🙂 Not trying to have a Gotcha!!! -moment where I tattle on them. Just a head’s up that it is good that Mrs. Alexander gets care. I am never anything but nice. My stepdad sometimes plays bad cop a little too much, but with the right heart.
- Don’t let the pattern get you down- It is easy to get in a funk. I have struggled with it for certain. Talk to friends. Read the Psalms. Get help. Pray. Play some music. Hit nature for some recharging. Find your place and do it. Self care is critical. 🙂
- No typical pattern to the disease at all– The longer I am around this disease, the more I realize it is a disjointed mess. As we talk in support groups and/or in WalMart or when someone calls my cell on the topic, every time I get asked “Is behavior/symptom X normal?” Often it is, but sometimes…often enough to not seem odd… it isn’t. Oh, and sometimes the timing is waaay out of whack. I have heard of folks still quite cogent after years and years and others with a completely different story. The only sure things we know of are: Memory will decline, what was normal will not be, and they will die minus a cure.
My run in June hopes to honor this pattern concept by running back and forth, up and down the bleachers for 9 hours per day, for 4 straight days. I hope to turn off my brain a little and just do….just like the last 2 years of longer runs than a dad-bod like me should attempt. At the end of that fourth day I just might scream Yahtzee! 🙂
#EndALZ
#4C4
#RunninTilImPurple
Update- Mom is about the same after the beforementioned spell. 🙂 Coming up on 14 years since diagnosis…
