The atmosphere here on the Planet Aphasia is warping my waffles. Don't ask me what that means. If your waffles are warped too, you'll understand. If not, trust me when I say that it's not a good thing here in the city of Caregiverville.
Every year there are eighty thousand new cases of the language disorder, aphasia, and I get a singer. Headline: Giddy Husband Tools Around In his Wheelchair Greeting his Day Like he's Been Over-Dosing On his Celexia Again.
"Happy birthday to you, happy birthday to you," my husband, Don, belted out like he was determined to be heard on the moon.
The problem is no one was having a birthday. The song is one of two that Don's aphasic brain can sing using actual lyrics. Well, sort of---the words often come out like they went through a blender first.
I should be happy for lyrics. Any lyrics. After all, Don has so few words in his vocabulary since his stroke. But these two songs are different. They're ones my husband learned when he was still using a highchair and they're stored in a relatively undamaged part of his brain. Even so, hearing "happy birthday" was a pleasure this morning---for the first hour. In the second hour, sweet little wifey poo that I am, I politely requested that he switch to his other song.
"Jesus likes me. Yo, you know," he complied. Okay, so he's got work to do on that childhood favorite before he's ready for American Idol.
"Yo," I interrupted Don, "Jesus likes me? I think he loved you when you were a kid."
This afternoon we were coming back from running errands and no one had yet found the switch on the back of Don's head to turn him off and he was getting annoying. Back up here---I'll admit that I was more than annoyed. I'd reached my quota of being a Nice Nancy about the never ending, loop of songs.
I pulled over to the side of the road and told him to get out if he couldn't behave himself. Hey, it worked on my brother and me when we were kids so I figured why not give it a try. And for a split second I thought that I really could do that, shove Don and his songs out the door and drive off. How much trouble could a person get into for leaving a wheelchair bound guy sitting at the side of a country road, singing "Yo, Jesus?"
When I shifted the car into park, Don looked at me as if---well, as if I'd warped my waffles for good this time, permanently indenting brain matter that isn't suppose to be marked with such a precise pattern of man-made deformities.
"I mean it," I practically shouted, trying to sound mean and bitchy. "Get out or get quiet!" If I were inclined to be honest here I'd admit that it wasn't much of a stretch for me to be the perfect bitch. Four hours of "Jesus has a birthday" or whatever it was that Don was singing at the top of his happy little lungs was doing a number on my head.
My husband took in my angry words and gave me an angelic smile, his blue eyes smoldering with mischievousness and after a very---and I do mean very---long pregnant, aphasia driven pause he said, "Change lanes."
I stared at Don for a full minute. I couldn't have been more astonished if he'd just used ruby red fingernail polish for eye liner and I wanted to bang my head on the steering wheel. (Now you know how waffles get warped in Caregiverville.) It's been five years, ten months and seven days that I've been trying to teach Don to say "change lanes" and "turn here" when we're in the car and he's frantically trying to get me to do one or the other. And the gods of Aphasia, bless their wicked asses, picked that time to let the words come down the pike and out his mouth.
"Okay, buddy-boy," I said with recessing gruffness as my bitch persona made her exit and I shifted the Blazer back in gear. "I'll change lanes and we'll go home. Together. But don't you forget that you're in the dog house now!" ©
Oh, that's so sad, but also so sweet. I'm sorry you both had to suffer through that.
ReplyDeleteYou know know who you really are until you've been challenged, Don's stroke challenged us in ways I never could have predicted.
DeleteWhat a great story, Jean! I wasn't following you back when this post was first written. No one knows what it means to be a caregiver until you are there! It sounds like you and Don kept your sense of humor through it all. I wonder if Don is singing "Yo Jesus Loves Me" in heaven now? Hope so! Thanks for sharing this post from your past. Thinking of you during these crazy busy days you're facing.
ReplyDeleteI spent lot of time learning to write back in those days.
DeleteVery funny! Unpredictable emergence of language but seems definitely associated with a highly emotional situation which can be known to occur.
ReplyDeleteThe fact that Don would initiate the words "change lanes" without parroting me was proof that he was as emotional in the situation as I was. I/we were fortunate that he never lost his sense of humor.
DeleteI only had a very short time of scrambled brain signals but I do understand the occasional crossness well. That you, however, managed to laugh in the teeth of huge irritations is to be admired no end.
ReplyDeleteI am sure it was very hard at times but you made life bearable for the two of you. Poor Don, poor you, poor me as was. I still wish mine were with me half the time but maybe mine as was before the end.
I have been away from the internet but I hope the move is progressing easily.
I set out to teach myself to write back in those days and keeping a gratitude diary was the beginning of me looking for and writing about the humorous parts of caregiving.
DeleteThe mind is a marvelous thing, and this is a great story. I wonder from time to time why this or that word pops into my mind. About a week ago, I woke up thinking "tetrazzini." I don't make chicken tetrazzini, I don't think I'd come across the word anywhere -- it just was there. It stayed with me for about three days, and then was gone. It was like an earworm, but linguistic. So odd.
ReplyDeleteI get those linguistical earworms too.
DeleteI spent over five years, twice a week watching Don get speech therapy at a college where students worked with him and I sat behind a one way mirror with a professor and other students. I learned SO much about language and the brain during those years. Even though he never got more than a 25 word working vocabulary they loved having him because he worked hard and the professors thought he taught the students valuable lessons. He had a way of getting his personality across without language and taught them that there are real people are beneath the textbook condition. It took the therapy serious but he was also the class clown.
Oh Jean. Sad, sweet. And the story of our futures. Yo, Jesus likes me. Yes, I think he did.
ReplyDeleteThe funny part is that neither Don or I were/are religious.
DeleteThis slice of life story has it all - the frustration, the humour, the love. Thank you for reposting, Jean!
ReplyDeleteDeb
Got one more oldie scheduled but after that I hope to go back to all live.
DeleteHave never had to do it but am convinced there is no harder job than caregiving but if you can throw in humor like you did, it is worth it.
ReplyDeleteIn the beginning I had to look for the humor but once I was able to do that, the caregiver role got easier. Blogging helped me a lot back in those days.
DeleteSounds like you and Don were a good team! I love seeing these old posts. Thanks for sharing them again!
ReplyDeleteI haven't read your older blogs. I was a caregiver for just a few months ... don't know how you kept your sense of humor! Glad that you did. He was one lucky guy!
ReplyDeleteI also really iked this post, my and Tasha love a lot if we didn't we would cry
ReplyDeleteYou have to bring humor into phases of your life like this. I know I did when Ken got sick too.
ReplyDeleteThe Flashback Post made me Smile Jean because The Man's repetitiveness with TBI can grate on my nerves sometimes and The Son has the Autism so he incessantly repeated things that sometimes made absolutely no sense, especially when he was Younger. I remember once he ran around a Bush at the Corner Bus Stop while we waited for the School Bus to pick him up for Grade School, merrily singing, "Peaches in a Can... Flush it again..." incessantly. To this day I have no idea what he meant and how long he might have continued singing it on the Bus until some other Kid might have yelled at him to Shut Up... I was just glad not to have to hear it all day long. With the Man, he mostly forgets what you just told him and asks the same Questions over and over again until you just make him stop. Or, he'll insist we JUST did something when it was Days, even Weeks ago. Other times he makes stuff up, Stories that never happened, but he fully Believes did, which isn't so bad if it's just me he's saying it to and not somebody else, to where I then get embarrassed for him... some of it can be pretty Outrageous stuff he's saying.
ReplyDeleteOur husbands' TBI were from different causes but we experienced a lot of similar situations and emotions dealing with the long term effects. It's why I've always been drawn to your blog. It's strange/weird to think I'm moving where no one has ever seen me in action as a caregiver, like the period in my life where I experienced the most personal growth didn't exist. When we start swapping background information I've always felt I was lacking even before Don's stroke because while other women talked about their kids and their accomplishments, I had a dog that could do circus tricks. I don't know who I'll be in my next chapter but I guess I'll figure it out.
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