My wife is an avid reader and as many avid readers are won’t to do, she loves to give me vivid, detailed synopsis of the stories or tales she has been reading. As I’m not a great recreational reader, (ive always enjoyed a good book, their are just many things I enjoy more) I’ve always enjoyed taking these great adventures and traveling the world with her in this manner. And it has always been fun to try to unravel her somewhat disjointed but spirited recitation.
But as I slip further and further into the darkness, keeping up with who the main characters are, little lone how their storylines interact is becoming nigh impossible. And lesser characters, such as Sally’s daughter’s boyfriend, well she might well as never mention him as to hope I will be able to recount anything even remotely close to his details. By the second or third line in, I’m lost.
These familiar little acts have always provided us an opportunity for unexpected closeness. An opportunity that I am loathe to give up just yet. So far, I have been able to fake my way through most of these situations so as to maintain the moment and spare my wife this next loss in our lives that my walk (our walk) is so incessantly, mindlessly causing. But the kicker is, she’s one smart cookie. She understands what’s going on. But she doesn’t relish losing these moments any more than I do. So, as I fake my way through her tales, she pretends I completely understand all she’s saying. All the while, each of knowing, at least subconsciously, that the other is only pretending, that this connection is all but gone except in the comfort of the execution which we seem to still treasure.
To carry this further, I have the same problems with any recounting of more than a little complexity. In two or three sentences I most often am just sitting with a blank stare, long lost in the forest of details. If the observer didn’t know better, they would be justified in believing me to be uninterested or apathetic. Nothing could be further from the truth. I’m trying with every fiber in my being to keep up, I just can’t, the words turn into a jumbled alphabet soup to which their is no meaning.
Much of my point in relaying all this is to say that if your patient/LO looks at you with mouth agape and a wide stare when you’re recounting how Aunt Jean’s daughter’s baby has the measles, give them the benefit of a doubt. They’re most likely trying their level best. And while you’re at it, give yourself a break. This caregiving thing is tough and an ever moving target.
Take care
Randy
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Hey Randy; there are so many things wrapped up in this I wish "normals" understood. I have always been the book-reader but the missus does the same thing with the news every morning in an effort to help me understand the world around me. I talked in the story I did about conversing with dementia people about if stories get too complex or the speaker uses too many "hims, her, they it, etc" words and even if you are told who him/her/they/it was at the beginning, two sentences later its gone.
One problem I have a hard time with is what I think of as lazy speakers; and yes I probably would include myself in that category in years past. The problem is when the speaker doesn't finish a sentence or thought before jumping or digressing to something new and seemingly unrelated...I know its the speakers attempt to explain things but, well, you stated the problem exactly when you said it can't be long or complicated....so when long and complicated meets lazy speakers, scenarios like this happen (to me, about 10x daily):
Speaker: Hey did you hear about that guy in Arizona that robbed a bank? The cops said...well the guy was born in another country and he didn't have a family but it was dangerous to live in <some far away place> because of political persecution but then his wife got deported so he....
Do you see how this meanders all over hells half-acre and for you or me trying to keep up, well to me thats a definition of insanity itself.
I guess the upshot is I wish people talking to me understood to finish their sentences and that any digressions are almost a guarantee I will have no clue what you are talking about no matter how long you talk....believe it or not, there is a computer programming rule for this about complexity but that would make little sense to anyone but hard-core geeks, and I am not talking to too many of them anymore.
Hi Randy. I would like to say that the way you describe your life inside and then how that appears to onlookers does, indeed, help. People believe what they see is the truth. Meanwhile you’re living a much more complex ‘play,’ within. How very isolating and solitary that is.
i don't know if this plays into it but I have always been a loner my whole life, even though I have been surrounded by people (once I escaped the clutches of rural Michigan)...not that I don't or didn't trust other people, just that my own decisions make sense to me in a way that decisions of others do not.
In any event, yes in a big way it is very isolating and places like this forum prevent the loneliness from become total and complete. However at that same time, I have always found humor in things that others don't and no I don't mean sadistic cat videos filmed in my basement. Just weird things in life have amused me and I have noticed they don't other people, so I keep my amusement to myself.
By way of example, my wife and I were at KMart a year ago near Christmas and at one point she found me staring at a display of childrens toys laughing like a loon and due to my aphasia I coudn't explain myself so I just had to leave. Before I left though I took a photo of what was making me laugh so hard...it almost felt like someone told me the worlds funniest joke and did it in a single breath. So I marked up that photo to explain the layers of things I found (stupidly) insanely funny. Whoa, gotta watch how I use that word.
For the uninitiated: the meds I take for my LBD are a form of concentrated cannabis that is colloquially known as "wax" for the waxy texture resulting from earlier methods of extraction. A single straight dose is known as a "dab". The benefit of wax is it takes far less for total efficacy, basically like an inhaler helps asthma folks. This wax may be suspended in polypropylene glycerol (sp, its been a long day already) and taken with a standard e-cigarette vaporizer discreetly (then, now it doesn't matter) in public. Its basically how I survived being in public when the executive function went to hell.
Dang, sorry I digressed. I guess what I wanted to say is I am treating this as my own personal magic show I get to attend for the rest of my conscious life. If I am the only one who gets to see it, well, thats dementia for ya.
As the great sage Buckaroo Bonsai said, no matter where you go, there you are.
Not in a morose manner but I do tend to make light of my situation for my own amusement and the shock value to others. This is what so often gets me in trouble. Sounds like you might have your own doghouse addition.
Yep and because no one jokes about this there is SO much low-hanging fruit, comedy-wise. A vastly-overlooked field IMO. Like the night the wife nearly took a bat to my head when I suggested putting "Well, that was pretty cool" on my headstone.
Comedy can be dangerous I know but as Jeff Spicoli said, danger is my business.
Sorry Jeff - got Randy’s note in your box. However, I love your contributions as well!
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