Posted 4/13/22
In their hearts humans plan their course, but the Lord establishes their steps.– Proverbs 16:9
Hi all! Happy Hump Day to each and every one of you! Another week trotting along. Mom is about the same as she has been the last 5-6 months. I went last night and fed her supper at the nursing home. She ate 100% of her food but wouldn’t drink a drop of her thickened water or choky milk. I would rather it be that way than the inverse. She can get plenty of water from her food. Still running nearly every day getting ready for my 2 day benefit run in June. 68 days until I Run Til I’m Purple. The fundraising in increasing nicely. I set a very lofty stretch goal for the event…I get that. However, as they say, the best fruit is waaaaay out on the limb.
With running in mind, I want to start a little theme here that I plan to hop in and out of over the next few months: An Intro into Dementia. I want this to be a practical look at some of the things that make it very hard as a caregiver, though, so the uninitiated are not caught with the dreadful “Deer in the Headlights” look. Today I want to talk about starts and stops. Note: This thematic idea came to me Monday on a dreadmill at Planet Fitness<spelling mistake intended> I was running along at full speed when I accidentally pulled the emergency cord with my bouncing, pocketed cell phone and slammed on the breaks, nearly running through the console to my doom. My little Garmin watch activity meter spiked downward faster than my checking account balance on April 15th.
Starts and stops are one of the many facets of dementia that make it very hard. Vascular dementia is typically paired with another form of dementia into what is called Mixed Dementia. This is the case in all but 5-10% of the cases according to the Alzheimer’s Association, and is the case with my mom as well who also has Alzheimer’s Disease (the most common type of dementia). This form of dementia, sometimes starting suddenly after a stroke, is especially known for starts and stops in progression. It is hard to grab ahold of how things are going because things tend to level off for a while until they quickly decline, then level off again. My mom has had the disease since at least her diagnosis year of 2009, but it leveled off for the first several years, then took a bad turn about 4-4.5 years ago. Then it sort of leveled off again after she stopped falling and was confined to a wheelchair. Things were level until her grand mal seizure during the pandemic when the “called in the family…that is us. 😉 ” assuming that her end was neigh and spending a few days with her during the pandemic in an isolated room was worth the possible risk. Then, after several days of 24/7 playing music, singing, praying, and holding mom’s hand, thy kicked us out again because of the pandemic. Now, fortunately, we can visit at will again…and she is still level. Along the way, mind you, medicine/science has told us that she has 6 or fewer months to live for 3 years come this May. Those were some long steps. And here we are…on a long step.
Other variations of dementia can also have this facet as well, although perhaps not as marked as mom’s cocktail of brain pathologies. Know this: every case is different. The brain is extremely complex. Every part of the brain is completely functional and most have some form of workaround wired in by the Creator, as evidenced by mom, by those with Traumatic Brain Injury, and by others. But it doesn’t matter if you have a stair step progression or a \ -shaped one, it always ends up in the same place. That is why we fight for a cure. We fight for treatments. We help those who need a break. The caregiver, too, is running on that treadmill that may stop suddenly at any given time…or may not. All parties involved face this challenge and we are here for you along the way.
Stinkin’ disease. 🙁 It needs to go.
#EndALZ
Bonus: I highly recommend Teepa Snow’s video on progression called Gems to you again. Here is the YouTube link: