Posted 4/30/24
Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. James 4:13-4
We are all terminal. No U-Haul behind the hearse. Or, perhaps as the movies might say, “none of us are gettin’ out of here alive”. There, I said it. You heard me. We will live, say, 60, 70, 80, 90, 100, or even 110ish, but someday there will be an end to every one us. We are finite. We will always be finite while spinning on this blue green planet. (Heaven is another topic)
With this DUHHHH information in mind…and we all get it…why do we get so worked up in the stage our loved one is in while in this dementia journey. Just because they have a terminal disease, all that truly changes is the extent to which they are terminal. They are terminaler than we are. 😉 (Sounds of groans from every English teacher I have ever had).
I understand that we hate change just as they hate change. We pre-grieve their loss in multiple ways, first grieving the lost opportunities, then the lost person version 1, then the actual person. Nefarious indeed this disease is. But we have to come to grips with our precarious nature and make the very most of every single day!
Googling the word Precarious taught me a few things. The ole Webster online said the following:
“English speakers are used to thinking of words that begin with certain letter combinations as being made up of a prefix and a root word. Misinformation is the prefix mis- plus information; impossible is the mutated prefix in- plus possible. So you can be forgiven for looking at precarious and wondering what the root word carious must mean. Related to caries that means “cavities”? Some transmogrification of the word care? Not all that begins with pre- is a prefix + root combo. Precarious actually comes from the Latin word precarius, which has a number of meanings. The earliest was “obtained by entreaty or prayer,” which is not part of the current meaning in English at all; and the Latin word also does mean “doubtful” or “uncertain,” like the Modern English precarious. When precarious first appeared in English in the early 1600s, its earliest meaning was “liable to be changed or lost at the pleasure of another.” This use generally referred to specific rights, such as tenancy, but was quickly broadened to refer to other things, like the charitable impressions of another person.”
While it is helpful, it left my grasp of the word a little precarious, so I turned to another recognized expert in language: Veggie Tales.
King Darius was presented by his advisors that Daniel was a threat that made the King precarious (vulnerable) and that he must fight to avoid this vulnerability up to and including turning those who don’t do everything he says into lion nuggies. You can read the actual story in the Book of Daniel Chapter 6. Make special note of the piece at the end of the chapter after the lions were rendered speechless:
“For he is the living God
and he endures forever;
his kingdom will not be destroyed,
his dominion will never end.
27 He rescues and he saves;
he performs signs and wonders
in the heavens and on the earth.
He has rescued Daniel
from the power of the lions.”
oh, and then the last verse of this chapter:
“So Daniel prospered during the reign of Darius and the reign of Cyrus[b] the Persian.”
Ok…this is the practical part for dementia caregiving…
We are all precarious. If COVID taught us nothing more than that isolation stinks and we read too much news (the murder hornets are coming…really???), we should know that for even the mightiest of us a microscopic bug can drop us like a sack of taters. We are sort of strong…but also ultimately weak.
So what do we need to do?
We need to care for our loved ones with reckless abandon rather than sitting in our chair looking t them with one eye on the Alzheimer’s Association website stages overview and the other eye looking at the 50 other progression stage models trying to predict the unpredictable future.
Why does this matter? Every case is different! Sure there are models that tell basically how things tend to work, but it is soooo easy to dwell instead of educate. The Pre-Care’y-Us us wants to start caring about things that aren’t even happening yet and, in the process we likely miss out on many opportunities to bring them joy and bring ourselves joy in the process. The Pre-Carry-Us us may tend to shout Jesus Take the Wheel and turn them over to God and do less…or nothing. I believe wholeheartedly that God CAN do things FOR us, but His M.O. is much more so to do things THROUGH us. We get to grow through the process and He still gets the deserved glory for what we do. 🙂 The “Prec-Arias” version Merriam Webster gave us is closest to the right answer…we need to trustingly pray and expect God to change the circumstance…but in a “Not my will but Your’s be done” kind of way. Oh, and all the while do this knowing that time and our lives are all precarious, so we press on…hard. We need to seek out this joy with them as if time is very short, because it is. The last 15 years with mom since diagnosis have been very fast. 🙁
Are you with me? I know it was an odd journey to get here. Will you recklessly seek joy with them and try hard to not dwell on what is missing to the exclusion of what is left? It is hard, but trust me, it is worth it.
ChatGPT/Cliff’s Notes version of my above rants: Love them hard and with no preconditions based on “how they are doing” stage-wise. You will be happier at the end and along the way knowing you did all you could.
#EndALZ
Update:
Mom has sounded terrible the last few days. She has sounded so bad that it makes me worry about going to Atlanta for the guinea pig project I am signed up for. However, her Ox is still in the 93-94 range and she is still eating well… Should I worry? Should I bring tomorrow’s worries to today? BOY do I want to! But I won’t. My plan instead is to focus on today’s joy with her and let the rest work out how it will. See, in this instance I will practice what I preach. (I am working on the weight loss, getting hearing aids, and a few other risk factors, but it is a work in progress. Get off me. 😉 )
A hat tip to “Beavis_Sinatra” on Twitter (X) for these precarious cups. I add them because it makes my wife angst. 🙂
I add this because it is my Longest Day Shirt and I love it. My Venmo and Pay pal options are ready if you want to order one for $20. 🙂 All profit goes to my Longest Day event in June. Speakin’ of precarious. 😉