Woke up angry at the universe today. Well, technically, I didn't wake up that way, as I went to sleep that way. Apologies for the grouchiness, but I need to let it out.
Angry at our ex-employers. Those who promised us "You're going to be able to build five houses by the time we're done" and spoke of large payouts at the end to make it all worthwhile... what they really meant was "Oh, actually you'll just be unemployed." Angry that they managed to build their mini-mansions, while Charlie spent the last ten years not even really able to enjoy his own unfinished home, because he was on the road making sure their business ran as smoothly as could be, that they could enjoy their Go Big lifestyles.
Angry that I don't understand completely what the future holds for us. I see one place that about 40% of stroke survivors have another stroke within 5 years... and then that the average lifespan for a stroke survivor is 7.5 years... but I don't get how such factors as age play into it (I would suppose that since most stroke victims are older, that would effect the outcomes/probabilities... what about for younger folk?) How does the fact that the clot/blockage is still there in Charlie's head play into it?
Angry that we were supposed to be starting our lives right now... focusing on getting things going for *US* again. That two-three weeks ago I was supposed to be leaving my employment, so that my new "job" could be seeing to it that our home was finished, so that he could come home and stay off the road for good next year... to actually enjoy the place he wanted to be, to call home.
Angry that there are days like yesterday, when he's hurting, having headaches, and we were unsure if it's simply due to muscle tension and ongoing eye strain, or more significant.... or this morning, when he seems more confused/lethargic.
Angry that he is the person I have chosen to spend my life with, to grow old with... that we were going to look out for one another. Which is what we're doing now, but it's years earlier than we thought. I understand that many people face these same things, for many different reasons, but that doesn't make it any easier.
Angry that we're a day away from our 16th anniversary, and I have to remind him on a daily basis what my name is.
Charlie's Spot
Monday, September 30, 2013
Monday, September 23, 2013
Sessions
Charlie's been home exactly a week now. I have to confess to having some rather extreme anxiety about is return, while at the same time being exceptionally happy about it.
Yes... finally sleeping in the same bed together... YAY!
But... what if something happens, and there aren't any nurses right there? We live an hour & a half from the hospital...
Yes... he can be outside, at his own home... YAY!
But... what if he falls??
That kind of shit.
He pushes himself hard, some days. Which is good... sometimes. Other times, not-so-much. Like the other day, when we went out to our place for an afternoon visit --we're still staying at his mom's home down the road for the next 3 to 5 months-- I went to put the dogs in the yard, turn around, and he's coming down the stairs on the deck. Backwards. Without his walker (it was standing at the top of the stairs). Leading with the wrong leg (As the saying goes "Good goes to heaven, bad goes to hell" meaning, when going up the stairs, you lead with your good leg, going down the stairs, you lead with your bad leg)...while he DID make it down safely (despite a chastising from me) the doctors tell you to do these things for a reason... they didn't just make it all up.
Speaking of pushing one's self, today he starts back to therapy. Three days a week in Nashvegas. Up this morning at 5am, helping him put his pants on, tie his shoes. Normally, he can do these things himself, but he's stiffer in the morning (heads out of the gutters, people), a bit more uncoordinated, and has a difficult time moving/doing the things that require more intricate movements. Like putting on pants.
Helping him with that was a bittersweet moment. I felt both the full extent of my love for this wonderful man, and anger at the universe for...well, for all of it. For using this event to remind me of how deep our love goes.
There are beautiful moments when that "couple's telepathy" thing comes into play, when I can guess what he's trying to say. When our friends are over, and there's a lot of conversation happening, and I see the look on his face as he starts to get overwhelmed, and I have to quietly say/remind them "too much right now" and he calms down, the look on his face relaxes back into a smile.
I have to remind myself of "too much" as well, mind you. Yesterday, he asked for his pen and paper (we use drawing a lot to get things across, since he doesn't recall the alphabet yet)... we've been doing word prompts, where I point to an object, and have him repeat its name with me... so, anyways, he "asked" for is pen and paper, and as I passed him the pen, I tried to have him say "pen." He said "no" a couple of times, and I pushed him.... and then I saw that saying the word "pen" had driven from his mind what it was that *he* had wanted to get across. That it was now gone, the space occupied by the word "pen."
And for a moment, I hated myself.
Then I remembered that none of us was given a guide book for this, that we're all figuring it out together, and hating myself was stupid.
Yes... finally sleeping in the same bed together... YAY!
But... what if something happens, and there aren't any nurses right there? We live an hour & a half from the hospital...
Yes... he can be outside, at his own home... YAY!
But... what if he falls??
That kind of shit.
He pushes himself hard, some days. Which is good... sometimes. Other times, not-so-much. Like the other day, when we went out to our place for an afternoon visit --we're still staying at his mom's home down the road for the next 3 to 5 months-- I went to put the dogs in the yard, turn around, and he's coming down the stairs on the deck. Backwards. Without his walker (it was standing at the top of the stairs). Leading with the wrong leg (As the saying goes "Good goes to heaven, bad goes to hell" meaning, when going up the stairs, you lead with your good leg, going down the stairs, you lead with your bad leg)...while he DID make it down safely (despite a chastising from me) the doctors tell you to do these things for a reason... they didn't just make it all up.
Speaking of pushing one's self, today he starts back to therapy. Three days a week in Nashvegas. Up this morning at 5am, helping him put his pants on, tie his shoes. Normally, he can do these things himself, but he's stiffer in the morning (heads out of the gutters, people), a bit more uncoordinated, and has a difficult time moving/doing the things that require more intricate movements. Like putting on pants.
Helping him with that was a bittersweet moment. I felt both the full extent of my love for this wonderful man, and anger at the universe for...well, for all of it. For using this event to remind me of how deep our love goes.
There are beautiful moments when that "couple's telepathy" thing comes into play, when I can guess what he's trying to say. When our friends are over, and there's a lot of conversation happening, and I see the look on his face as he starts to get overwhelmed, and I have to quietly say/remind them "too much right now" and he calms down, the look on his face relaxes back into a smile.
I have to remind myself of "too much" as well, mind you. Yesterday, he asked for his pen and paper (we use drawing a lot to get things across, since he doesn't recall the alphabet yet)... we've been doing word prompts, where I point to an object, and have him repeat its name with me... so, anyways, he "asked" for is pen and paper, and as I passed him the pen, I tried to have him say "pen." He said "no" a couple of times, and I pushed him.... and then I saw that saying the word "pen" had driven from his mind what it was that *he* had wanted to get across. That it was now gone, the space occupied by the word "pen."
And for a moment, I hated myself.
Then I remembered that none of us was given a guide book for this, that we're all figuring it out together, and hating myself was stupid.
Tuesday, September 17, 2013
A Sampling of Goodies from Charlie's Spot!
Just a smattering of the WIDE variety of artwork you can find in Charlie's Spot! Stop on by and spread the word to your friends!
Also, at a friend's suggestion, I've added a link over on the sidebar, just below the About Me space, where monetary donations can be made. I have to say, I suddenly understand why folks dislike the American medical system so much... getting a $2,000 bill for a short ambulance ride makes one cringe. And that's just for the ambulance!
Also, at a friend's suggestion, I've added a link over on the sidebar, just below the About Me space, where monetary donations can be made. I have to say, I suddenly understand why folks dislike the American medical system so much... getting a $2,000 bill for a short ambulance ride makes one cringe. And that's just for the ambulance!
Friday, September 13, 2013
Charlie's Spot and Assorted Ramblings
I keep meaning to post here... but, to be honest, days are long right now and nights are early. By the time I'm thinking I'm ready to sit down and type, I find myself fading out and ready for sleep.
It's been a long month, 3 hours a day spent in a car, driving back and forth to Nashville, and that's not even counting the time actually spent IN Nashville. That's all coming to an end on Wednesday, when Charlie returns home. Well, home *kinda*... technically, he's returning to his mom's house down the road from us, because it'll be best for him for the next few months/year while we get our living situation at OUR home to where it's easier for him to be out there. I want him home with me, obviously, but... c'est la and all that shit.
So many things going through my head, still.
It's painful to work with him on (re)learning basic things, like the ABC's, or counting past 10. Words like "water" or "bed." Shopping in the preschool section of Barnes & Noble for my 48-yr-old partner was heartbreaking. He understands concepts completely (trust me when I say he's fully capable of following a conversation, and understands all that goes on around him) but the words aren't there for him... Charlie... probably one of the most eloquent and intelligent people I know of. We look at flash cards designed for 3-5 year olds, he studies them... and shakes his head. If I say "A" he repeats it, sounds it out... but five minutes later, if I show him the same card, it's already gone, that file tucked away, but the path to it is lost. I know this one takes time, the re-aquisition of vocabulary, but it's also one of the more challenging aspects for both of us. The physical is the easy part, muscles "learn well." They're simple beasts. The brain...
The brain is kooky thing. We sat there one day, and he sang along to the ENTIRE Joan Osbourne album "Relish"... the entire thing he got right (except for the mumbled parts where he never knew what she was saying to begin with). But then, when asked if he wanted to go outside, he couldn't say "outside." Kooky, I tell you... kooky! That whole right brain vs left brain thing. We tried singing answers to questions, to see if that would allow the files that are hidden to be accessed, but it was a no go. So far.
Or, like last week... he'd been working on saying Ajakx (who has been in to visit him several times, thankfully they allow pet visitation at the place he's in). He'd been getting pretty good at it... but was having difficulty with "Ripley" (the new pooch). A few days later, he popped out with "Ripley" with no problem... but couldn't get "Ajakx" again. Or reading cards from friends... most, he looks at, shakes his head, and I read it to him. But on Wednesday, he gets one from our friend from Barbro in Sweden... he looks at it, and goes "Barbara." Close enough for me... but it's odd since he only knew her from when we worked in Phoenix (she was this very shy woman who was staying in the same hotel as us whom we befriended)... he gets her name, but ones from his aunts, longtime friends... ME he doesn't.
He does no know how to say "I love you" when it comes time for me to leave at night. I may have uber-pressured him into learning that one, though!
Then the financial aspects... basically both of us losing our job in essence, the ever-increasing pile of bills, yadda yadda yadda. Those weigh heavily, even when I remind myself that we existed w/out our current (well-paying) job... but then I also remind myself that we didn't have a giant pile of bills at that time, either, and were able to travel and both able to work. It'll work itself out one way or another, that I know. It's just going to mean some major lifestyle changes.
Many of our friends have been generous with donations, but it still leaves a lot to be covered. Honestly, it sends me into a bit of a panic. I recall how when I was young, my father's health issues... bitten by a rattlesnake one year (two weeks in ICU)... followed by heart surgery... followed by back surgery... broke our family in the most literal of senses. I don't think I ever realized how that scarred me in its own way until now.
Not so much a fear of being poor -I was "poor" the majority of my life- but just how fragile financial standings can be. How much impact it can have in other ways. I mean, if we were going about our "regular" lives, being poor would be no big deal... but heading into trying to finish our home, and having to reconsider/replan what the end result will be? Trying to work in those things we thought we had another 20 years or so to plan for? Or just those "normal" day-to-day expenses we now have... ongoing therapy, mainly. And making it so that he's physically able to be in his own home.
Blurgh.
It's not all Doom and Gloom, mind you. There are many, many bright things out there, we still laugh at stupid shit (his warped sense of humor is completely intact) and give the cute nurses The Eye... it's just... different, now. I try and maintain a positive face in the more public eye (like FaceGook) but sometimes I need to let a bit out, so my apologies if the posts here get dark every now and then.
Anyways, one of the positive things: As I mentioned, many of our friends have been generous with the dollars... but many live on a budget as well but still wanted to help, so we came up with the idea of a "benefit store" on Etsy. Enter Charlie's Spot. A place filled with the art of many different folks, 100% of the proceeds of which will go towards his medical costs, as well as the renovation/reconfiguring/etc of our home to make it so that he can BE at home eventually.
I know not a lot of people read this blog any more -the dangers of getting lax with it for a while there- but if you DO read it, please share the link above, and encourage your readers to do the same! (and if you or they happen to be an artist, and are interested in donating to the shop, shoot me an email at judahsleep@gmail.com and we can chat!)
It's been a long month, 3 hours a day spent in a car, driving back and forth to Nashville, and that's not even counting the time actually spent IN Nashville. That's all coming to an end on Wednesday, when Charlie returns home. Well, home *kinda*... technically, he's returning to his mom's house down the road from us, because it'll be best for him for the next few months/year while we get our living situation at OUR home to where it's easier for him to be out there. I want him home with me, obviously, but... c'est la and all that shit.
So many things going through my head, still.
It's painful to work with him on (re)learning basic things, like the ABC's, or counting past 10. Words like "water" or "bed." Shopping in the preschool section of Barnes & Noble for my 48-yr-old partner was heartbreaking. He understands concepts completely (trust me when I say he's fully capable of following a conversation, and understands all that goes on around him) but the words aren't there for him... Charlie... probably one of the most eloquent and intelligent people I know of. We look at flash cards designed for 3-5 year olds, he studies them... and shakes his head. If I say "A" he repeats it, sounds it out... but five minutes later, if I show him the same card, it's already gone, that file tucked away, but the path to it is lost. I know this one takes time, the re-aquisition of vocabulary, but it's also one of the more challenging aspects for both of us. The physical is the easy part, muscles "learn well." They're simple beasts. The brain...
The brain is kooky thing. We sat there one day, and he sang along to the ENTIRE Joan Osbourne album "Relish"... the entire thing he got right (except for the mumbled parts where he never knew what she was saying to begin with). But then, when asked if he wanted to go outside, he couldn't say "outside." Kooky, I tell you... kooky! That whole right brain vs left brain thing. We tried singing answers to questions, to see if that would allow the files that are hidden to be accessed, but it was a no go. So far.
Or, like last week... he'd been working on saying Ajakx (who has been in to visit him several times, thankfully they allow pet visitation at the place he's in). He'd been getting pretty good at it... but was having difficulty with "Ripley" (the new pooch). A few days later, he popped out with "Ripley" with no problem... but couldn't get "Ajakx" again. Or reading cards from friends... most, he looks at, shakes his head, and I read it to him. But on Wednesday, he gets one from our friend from Barbro in Sweden... he looks at it, and goes "Barbara." Close enough for me... but it's odd since he only knew her from when we worked in Phoenix (she was this very shy woman who was staying in the same hotel as us whom we befriended)... he gets her name, but ones from his aunts, longtime friends... ME he doesn't.
He does no know how to say "I love you" when it comes time for me to leave at night. I may have uber-pressured him into learning that one, though!
Then the financial aspects... basically both of us losing our job in essence, the ever-increasing pile of bills, yadda yadda yadda. Those weigh heavily, even when I remind myself that we existed w/out our current (well-paying) job... but then I also remind myself that we didn't have a giant pile of bills at that time, either, and were able to travel and both able to work. It'll work itself out one way or another, that I know. It's just going to mean some major lifestyle changes.
Many of our friends have been generous with donations, but it still leaves a lot to be covered. Honestly, it sends me into a bit of a panic. I recall how when I was young, my father's health issues... bitten by a rattlesnake one year (two weeks in ICU)... followed by heart surgery... followed by back surgery... broke our family in the most literal of senses. I don't think I ever realized how that scarred me in its own way until now.
Not so much a fear of being poor -I was "poor" the majority of my life- but just how fragile financial standings can be. How much impact it can have in other ways. I mean, if we were going about our "regular" lives, being poor would be no big deal... but heading into trying to finish our home, and having to reconsider/replan what the end result will be? Trying to work in those things we thought we had another 20 years or so to plan for? Or just those "normal" day-to-day expenses we now have... ongoing therapy, mainly. And making it so that he's physically able to be in his own home.
Blurgh.
It's not all Doom and Gloom, mind you. There are many, many bright things out there, we still laugh at stupid shit (his warped sense of humor is completely intact) and give the cute nurses The Eye... it's just... different, now. I try and maintain a positive face in the more public eye (like FaceGook) but sometimes I need to let a bit out, so my apologies if the posts here get dark every now and then.
Anyways, one of the positive things: As I mentioned, many of our friends have been generous with the dollars... but many live on a budget as well but still wanted to help, so we came up with the idea of a "benefit store" on Etsy. Enter Charlie's Spot. A place filled with the art of many different folks, 100% of the proceeds of which will go towards his medical costs, as well as the renovation/reconfiguring/etc of our home to make it so that he can BE at home eventually.
I know not a lot of people read this blog any more -the dangers of getting lax with it for a while there- but if you DO read it, please share the link above, and encourage your readers to do the same! (and if you or they happen to be an artist, and are interested in donating to the shop, shoot me an email at judahsleep@gmail.com and we can chat!)
Monday, September 2, 2013
Curveballs: Therapy
I went in this morning so I could sit in on his therapy sessions. Normally, I've been doing afternoons/evenings with him, so he's pooped out and it's hard to judge.
I was impressed with the jump I saw yesterday... I was triply impressed with what I saw today... as were his therapists.
Three laps around the entire upstairs with a platform walker, w/only a bit of stabilization from the PT. (and a break or three mixed in) Using the hemiwalker for trips to the bathroom.
The rt leg is definitely improving exponentially, the rt arm not so much. Which is to be expected at this point. Wherever he ends up with that one will most likely be the last to come, but the OT seemed happy. Well, she was definitely happy. They're working on rt upper extremity weight bearing, active range of motion facilitation, rt-side awareness (visual and otherwise, standing balance (fairly good), and transferring.
Speech is still problematic. I have to say that I'm suddenly regretting not going into ST, as it's one of the more interesting/fascinating aspects to me -how the brain works in to regard to language. Never thought I'd be applying it to Charlie... one of the most eloquent people I know... but hey, Shit happens. He's very good with minimal vocal/visualcuing for most things. Some phonetic jumps... like the earlier mentioned "Fuck vs Phone" and the perseveration is obviously still there, though it really does seem to be making its own jumps as well. Good with written word association w/pictures --write down "fork" and show him two pictures and he'll get 9 out of 10... I want to try writing down three words and showing him ONE picture, and work up from there. Also good w/singing... moderate difficulties with "point at the table/door/window/etc" He still (obviously) has difficulties with relating what it is in the physical world, with what it is in his brain, and with what it is verbally. If that makes sense. Like if you show him a pic of a door, he can match it w/the written word... but if you ask him to point to the door it stops him for a bit, and f you ask him to say it, it also causes pause. Sometimes. The files are still there (to use that terminology) it's just finding the right drawer that they're in and getting them in hand (mouth)
Oh yeah! And two trips up and down the "stairwell" (it's all of five stairs)... while I still understand that there's a strong possibility that he will probably not be running up our stairs any time soon (I'm not ruling anything out, however) it does make me feel good at his future ability to navigate our home. We'll still be doing ramps/poured-concrete sidewalks, and building a downstairs bedroom and bathroom, but... yeah.
Good things.
I was impressed with the jump I saw yesterday... I was triply impressed with what I saw today... as were his therapists.
Three laps around the entire upstairs with a platform walker, w/only a bit of stabilization from the PT. (and a break or three mixed in) Using the hemiwalker for trips to the bathroom.
The rt leg is definitely improving exponentially, the rt arm not so much. Which is to be expected at this point. Wherever he ends up with that one will most likely be the last to come, but the OT seemed happy. Well, she was definitely happy. They're working on rt upper extremity weight bearing, active range of motion facilitation, rt-side awareness (visual and otherwise, standing balance (fairly good), and transferring.
Speech is still problematic. I have to say that I'm suddenly regretting not going into ST, as it's one of the more interesting/fascinating aspects to me -how the brain works in to regard to language. Never thought I'd be applying it to Charlie... one of the most eloquent people I know... but hey, Shit happens. He's very good with minimal vocal/visualcuing for most things. Some phonetic jumps... like the earlier mentioned "Fuck vs Phone" and the perseveration is obviously still there, though it really does seem to be making its own jumps as well. Good with written word association w/pictures --write down "fork" and show him two pictures and he'll get 9 out of 10... I want to try writing down three words and showing him ONE picture, and work up from there. Also good w/singing... moderate difficulties with "point at the table/door/window/etc" He still (obviously) has difficulties with relating what it is in the physical world, with what it is in his brain, and with what it is verbally. If that makes sense. Like if you show him a pic of a door, he can match it w/the written word... but if you ask him to point to the door it stops him for a bit, and f you ask him to say it, it also causes pause. Sometimes. The files are still there (to use that terminology) it's just finding the right drawer that they're in and getting them in hand (mouth)
Oh yeah! And two trips up and down the "stairwell" (it's all of five stairs)... while I still understand that there's a strong possibility that he will probably not be running up our stairs any time soon (I'm not ruling anything out, however) it does make me feel good at his future ability to navigate our home. We'll still be doing ramps/poured-concrete sidewalks, and building a downstairs bedroom and bathroom, but... yeah.
Good things.
Sunday, September 1, 2013
Curveballs: Three Weeks In
Charlie was in good spirits today, it seemed. I was planning on doing a few rounds of ten leg lifts/kicks with him, but he did 3 rounds of ten on his own, and then a round of 20. I think he may have been doing another round of 10 w/bird when I left, even.
Did some flash cards (which is both heartbreaking to be using toddler-age flashcards w/my 48-yr-old partner, but also encouraging when he gets them)... made up a bunch of my own that I think will be more useful in the day-to-day. Stuff like water, thirsty, hungry, in/out, hot/cold, various names, some numbers, me/we/I/you, house, room, bath, etc.
Some he got right off with no prompting at all (hungry and Ajakx)... but then he'd look at "house" and say "hungry" instead. Right start, at least. Funny story along that lines... he wanted something from the table, but I wasn't sure what it was... out of the blue he goes "Fuck." I said I doubt the nurses would approve of that. Eventually came around that he wanted the phone... again, right start phonetically, wrong finish.
Took a ride down to the park for a bit. Or more like I pushed up to the park. Going back...downhill...should be interesting. Anyone know where wheelchair brakes are located?
Did some flash cards (which is both heartbreaking to be using toddler-age flashcards w/my 48-yr-old partner, but also encouraging when he gets them)... made up a bunch of my own that I think will be more useful in the day-to-day. Stuff like water, thirsty, hungry, in/out, hot/cold, various names, some numbers, me/we/I/you, house, room, bath, etc.
Took a ride down to the park for a bit. Or more like I pushed up to the park. Going back...downhill...should be interesting. Anyone know where wheelchair brakes are located?
Subscribe to:
Posts (Atom)