Posted 11/22/21
“By faith Joseph, when his end was near, spoke about the exodus of the Israelites from Egypt and gave instructions concerning the burial of his bones.” -Hebrews 11:22
Hi all! Happy Monday to ya! (Aren’t they all???) Just dropping a quick post today, knowing that if I had more time it would be shorter.
I guess the point I want to make today is not to give up, but I am going to meander all over the map to make this plea. As most who care for loved ones hear early and often, I am asked constantly, especially at family gatherings in which it has been a while since you visited with those around you, is first “How is she doing?” and then the diagnostic question “Does she know you?”. I have never been great at answering the first question, so I tend to say “About the same”. The second, though, is a challenge. I certainly get it. That is the crux of their condition, in many ways. Most folks don’t understand the “stages” of dementia and most, like even me, struggle to even quantify the number of stages anyway as if there is a tidy separation between stages. I mean, are there three stages as the Alzheimer’s Association‘s model presupposes, or are there 5 or even 7? Teepa Snow, whom I love to watch videos and read literature from, subscribes to a 6ish-stage Gems model, depending on how you count them. If you haven’t seen her video outlining this, please watch it now HERE. It is an outstanding and positive way to look at the disease’s progression. But, like the failures of a leader or a nation, there aren’t often neat transitions in the failure of a brain….more like reversed building blocks that bob and weave, wax and wane.
After discussing these stages with family for a bit at our wonderful and delicious Thanksgiving meal Sunday, I zipped over to see mom.
She slept the entire visit.
There was a time or two that I got a peep and/or a sound or two from her, but genuinely not a whole lot. However, I talked to her quite a bit. I also talked to her sweet roommate, who thinks a lot of mom. Is it worth it to me to talk to a snoozing mom? I hear all the time about others’ decisions to not visit: “Why bother? She sleeps/doesn’t know who I am/isn’t really there”. I fully understand and respect the opinion…and still love you just the same…but I do disagree. We simply don’t know what is understood and what isn’t. Maybe just hearing the cadence and tone of my voice is recognizable to mom? I really feel like it is. When I hold her hand, her grip is less tight than the normal, clinched Parkinsonism (rigid) bind. Couldn’t that be a sign of her, through body language, feeling more at ease? Non-verbal cues are all around us…who’s to say they stop being effective when you lose the ability to speak? I know that we feel better in our conscience to accept that they don’t hear/understand…but what if this isn’t the case?
I realize the “What if” world is a tough one to live in and that we love and hate absolutes all at once, but this one applies. (BTW…it is a similar dilemma we face in deciding our view on abortion. What is the “thing” being aborted? If it is merely a bundle of cells, it points to a completely different response than if it is a baby. Location or size or the ability of the baby to take care of itself becomes a secondary concern if we establish that it is a living baby that is made to die in this procedure.) So, with mom, is her ability to respond to me in a way I understand the only reason to visit and talk to her? What if we are wrong? Therefore I visit expecting that she can benefit from the visit and knowing that I do benefit at the same time. I don’t want to guilt-trip you into visiting, but at least give it some thought with this in mind.
We seem to value seniors, especially sick ones, less and less in our culture. With the typically good emphasis in 2021 on replacing hurtful words with helpful ones, can’t we work on some helpful ones for those with dementia? Although there are clinical elements to these two terms, “Invalid and Demented” are two words that get tossed around often.
Invalid, according to ETYM Online, means “not strong, infirm,” also “infirm from sickness, disease, or injury”, 1640s, from Latin invalidus “not strong, infirm, impotent, feeble, inadequate,” from in- “not” (see in- (1)) + validus “strong” (from PIE root *wal- “to be strong”). With pronunciation from French invalide (16c.).” —-This word has the same spelling and some rubbed off meaning, in my book, in the one that means “Not valid”. Your argument is invalid. Grammarist.com pokes me and reminds me that these two words are Heteronyms. Why is it that heteronyms often leave us either dismayed or sad or confused? Does one gain baggage from the other? In this case it does. An invalid argument is a weak one…but much worse than a weak person. It is a non-argument…foolish to consider. Is an invalid person still a person? This is, in yet another way, why we need an overarching framework to make sense of life. If we are of value only based on what we can do for society, there are many, many invalid reasons why to keep an invalid alive. However, if the weak and fragile are valuable because they are image-bearers to their Creator, the rules change. What if they are? You and I have to consider this…
Demented– Here is one with a whole luggage cart of baggage. Check out these two definitions from Merriam Webster:
Definition of demented
1: MAD, INSANE The advertising campaign for the movie version is trying to sell it as a prankish comedy, with the eccentric aunt who appears from nowhere as a demented Mary Poppins.— Pauline Kael
…the violence was instigated directly by Serbian nationalists in Bosnia and in Belgrade as part of their demented project to separate the two intermixed ethnic communities once and for all,— Charles Simic
2: affected by or exhibiting cognitive dementia: At least one-third of people serving as caregivers for a demented husband or wife become chronically depressed.— Bennett D. Gurian
I am not sure if this is a spectrum somehow or a heteronym, but it sure feels icky. It reminds me of when my doctor wrote on my chart that I was “morbidly obese” some time ago…It is hard to sanitize that combo of words. Yes…mom is demented. She is dementia-ed. (I am sort of sorry, fellow grammar nerds. I am only in your club when it serves me. 😉 ). But surely there is a clinical and loving word we can use instead of demented? Sigh…and you wonder why they won’t visit. Connotations right and left. Maybe if we changed “demented invalid” to “Brain Bandit Battler” or perhaps “Still-the-same-person-except-without-the-ability-to-remember-much-friend” or something nice? Help me out…post some thoughts in the comments. Can’t we call them something nice as a category…or should we just stick with the good ole title they had before they were visited by this disease? I do like hearing the nurses at my mom’s nursing home’s memory unit call the ladies “Mom” and the men “Dad” because those terms are positive in most cases and denote something familiar. They seem to respond positively as best I can tell. Hmmm…what think you?
Regardless, I will keep on visiting as often as I can now that the Shawshank restrictions have been removed. I will keep talking to her all I can and will assume that she gets it and feels good about hearing me. Please consider doing that too unless you have a compelling reason why I am wrong. 😉
Update: I had a nice, if one-sided visit yesterday. I am going to shoot for several days a week to make a drive to see her, as close to what I used to do as possible, while I can. My sister got a smile from mom the day before:
She is doing about the same as she has for the last 2 years. She is happy…she sleeps 22-23 hours a day…and she is in little or no pain on a day-to-day basis. Does she know me? One might say, looking from a distance, “no”…but I say “What if?” (and throw in a dash of “who cares” to boot.)
#EndALZ
Runnin’ Til I’m Purple II Update: I missed a month of running and gained a baker’s dozen of pounds to boot, but I am officially back on the trail. I ran an hour this morning before coming in to work and plan on hitting it a few more times this week…and getting in one long run this weekend. Despite being treated exceptionally well by the folks at my clinical study, I had some small issues that precluded me from running, then I got boosted and got my flu shot which slowed me down for a few days. Now I am ready to hit the ground runnin’. We have a huge goal this year and a mere 8 months to get there. I have lots and lots of ideas of how we can reach the fundraising goal. 🙂 If you don’t mind dropping some coin in the little electronic bucket at this link, know that you are super appreciated. 🙂 Reminder: My shark jump this year will be to try to run the Frisco Highline Trail again on day one…then run home the next day…back the same distance. For skinny, athletic types 74 miles probably wouldn’t kick their butt. For me…sigh. It will be a lot. 🙂 But the cause is well worth it. We need to end this stuff so we can eradicate the above words from the language…or at least return them to their other meanings…
Last thought: I am thinking of adding a travel fund donation option here and on my new blog/website. I would like to visit the other ADRCs and, in the same visit, arrange to help in a clinical study. I already have one penciled in my plans that is hundreds and hundreds of miles away…but it looks outstanding! I will fund that one with joy if I have to camp my way there. Heck…I have lots of Cerebrospinal Fluid and endure MRIs and PET scans like a big dog, and they need folks that can help. However, I never want to appear to be benefiting personally from any donations. That has never been and will never be the point of this work. If it would seem too much like that, I will just save up my pennies and travel on my own. What do you think? If I do, maybe request Expedia GCs or similar? I would always post receipts… It just creeps me out to think of someone thinking I hope to benefit financially from mom’s pain. I will quit writing and just panhandle for donations first. 😉 I just want a cure and will do what it takes to help. (Want to look up one in your area: Here is your link.)