So today, Bob's toes were curling up and causing him a lot of pain. This is weird, as they are the toes on his unaffected left foot. Sort of curling inwards, like hammertoe. I have asked the neuro doc about this, but he says there is nothing he can do about it. This toe curling causes Bob a lot of pain, not to mention greatly interferes with his walking practice.
So I thought maybe soaking his foot in water with epsom salt would help. So I went into the laundry room where I keep some epsom salt and noticed that my dryer had stopped. Mid-cycle. I turned it back on and it made a whining, humming noise and then shut down. Tried it again. Same results. And again. Same result.
Now, I do laundry every single day. Believe me, Bob goes through enough towels, hand towels, sheets, bed pads etc. I have a full load every single day. Sometimes twice a day, if he has an accident. So the dryer bombing out is not a good thing. I dig out the invoice from the place I bought the washer/dryer and call them for a service call. The guy on the phone tells me it sounds like the motor died. Tells me a new motor will cost $150.00. Plus labor, plus service call. And it would be cheaper to buy a used dryer, which he could sell me for about $160.00.
So I go back into Bob's room and tell him all of this and he says, (I think), "Save it."
And I say, "Save it? I should repair the dryer?"
He says, "No! Save it!"
"I don't understand. It sounds like you're saying 'save it'."
"No! Save it!"
Ok, this is aphasia. It sounds like "save it" but he must be trying to say something else. I ask him to repeat it. Still sounds like "save it". I ask him to repeat it slower.
He says (I think), "David."
"David?" Now, I have a nephew named David, but what's that got to do with anything?
He says, "NO!"
I say, "Say it again."
He says (I think), "Maggots."
I say, "Maggots? Did you say maggots?"
"NO! Ga--gits!"
Me: "Huh?"
Well, we go around like this for about 15 minutes, me asking him to speak slower, speak louder, him responding with "maggots", "ga-gits" and other stuff I can't understand, but finally, finally, I realize what he is saying. Which is:
"GOD DAMN IT!"
Well. You don't say.
Anyway, I ended up running out to the appliance place and buying a used dryer for $159.75. They were able to deliver it this afternoon. Which was good. As I really need it.
But, I tell you, money is flying out the door. This on top all Bob's medical co-pays this month and then the vacuum cleaner broke down. And the house insurance went up. And Bob's state EBT benefits went down. This month, I decided to do something nice for me, I hired a guy to take care of our lawn--everything, including weeding the garden. It's going to cost $50.00/month but I am tired of trying to do it all. Trying to be SuperWoman. And, now, I wonder if we will be able to afford to keep that service. As Bob says, GOD DAMN IT!
Friday, June 29, 2012
Wednesday, June 27, 2012
Weathering The Storm
These past few days, we've been deluged by Tropical Storm Debby.
Our street was flooded, but the Pink House sits on higher ground so we were dry. Many people lost power, some are still in the dark, but our lights are still on. Tornadoes struck to the west and north of us, but the only damage here was the lamp that sits on my nightstand, which the wind knocked to the floor and shattered...
This was the first big storm since the stroke, so it was a bit unsettling. I often wonder what I'd do here, alone with Bob, if a truly big hurricane hit. We are located in a "white zone" which is a non-evacuation zone and pretty much, this is where people are evacuated too and shelters are located. Earlier this year, I checked into registering Bob for the Special Needs Shelter but was informed that he did not qualify for it because he is "too medically risky" with his swallowing difficulty and feeding tube---which I think is bizarre as I take care of him alone and they have medical personnel at this shelter. Anyway, I was told, in event of a hurricane, I should either keep him at home or admit him to a hospital.
The summer after Bob and I bought the Pink House, we had four separate hurricanes. All four times, we boarded up the house with plywood, all nineteen windows, and hunkered down. The first storm veered off at the last minute and missed us completely. Two others were drastically downgraded by the time they reached our shore. The fourth, Hurricane Jeanne, blew through as a CAT 1. I had never seen it rain sideways before. And the wind. I never heard a wind that sounded alive, like a thousand howling creatures in the sky. That night, sheets of rain pummeled the house. You could feel the house shudder and hear the window weights banging inside the walls. But I wasn't scared, because I was in Bob's strong arms.
This morning, Debby was downgraded to a Tropical Depression. The wind has quieted down completely, though the sky is still gray. It would be nice to see the sunshine again, but the Home Draw lab tech was here this morning and told me that there's another tropical disturbance in the Gulf and that's predicted to reach us by Saturday...
Our street was flooded, but the Pink House sits on higher ground so we were dry. Many people lost power, some are still in the dark, but our lights are still on. Tornadoes struck to the west and north of us, but the only damage here was the lamp that sits on my nightstand, which the wind knocked to the floor and shattered...
This was the first big storm since the stroke, so it was a bit unsettling. I often wonder what I'd do here, alone with Bob, if a truly big hurricane hit. We are located in a "white zone" which is a non-evacuation zone and pretty much, this is where people are evacuated too and shelters are located. Earlier this year, I checked into registering Bob for the Special Needs Shelter but was informed that he did not qualify for it because he is "too medically risky" with his swallowing difficulty and feeding tube---which I think is bizarre as I take care of him alone and they have medical personnel at this shelter. Anyway, I was told, in event of a hurricane, I should either keep him at home or admit him to a hospital.
The summer after Bob and I bought the Pink House, we had four separate hurricanes. All four times, we boarded up the house with plywood, all nineteen windows, and hunkered down. The first storm veered off at the last minute and missed us completely. Two others were drastically downgraded by the time they reached our shore. The fourth, Hurricane Jeanne, blew through as a CAT 1. I had never seen it rain sideways before. And the wind. I never heard a wind that sounded alive, like a thousand howling creatures in the sky. That night, sheets of rain pummeled the house. You could feel the house shudder and hear the window weights banging inside the walls. But I wasn't scared, because I was in Bob's strong arms.
This morning, Debby was downgraded to a Tropical Depression. The wind has quieted down completely, though the sky is still gray. It would be nice to see the sunshine again, but the Home Draw lab tech was here this morning and told me that there's another tropical disturbance in the Gulf and that's predicted to reach us by Saturday...
Sunday, June 24, 2012
My Life as a Novel
Lately, I cannot help but feel as if I've become a character in a novel. Having written novels myself, I know the basics of plot construction and, darn it all, if it doesn't seem as our life has turned into the typical plot found in the typical novel.
For those of you who don't know what I'm talking about, pretty much every movie you watch, or novel you read, follows this basic plot outline:
A. Start with a change and introduce the hero/heroine. Start with the minute, the day, the month that everything changes for our plucky, though slightly flawed, hero/heroine and propels him/her on a journey.
B. Give our hero/heroine a goal to accomplish.
C. Throw obstacles in the pathway.
D. Let our plucky, though slightly flawed, hero/heroine triumph over obstacles, then, after a brief respite, throw new obstacles in his/her path.
E. Keep our hero/heroine struggling, make it look as if he/she will reach their goal, let him/her triumph again and then, finally, throw one last seemingly insurmountable obstacle at them which brings our hero/heroine to their knees---and us to the climax where the audience will grip their seats...
F. Then let the hero/heroine triumph. Or not. It's the author's call here. But be sure our hero/heroine is somehow changed from the experience.
So that's it, the basic bones of a plot. And once you know that, it's kind of irksome because you begin to see it in every form of entertainment out there--be it a love story or a murder mystery.
One of my favorite movies is Stranger Than Fiction which stars Will Ferrell and Dustin Hoffman. In the movie, Ferrell plays a plucky, though slightly flawed, hero who discovers that he is a character in a novel with an unseen author narrating his every move. Then he realizes (through foreshadowing) that the author is planning kill him, so he must find her before she does. One of the best scenes is when he asks a professor of literature (Dustin Hoffman) for help, and the professor tells him that before they can find the author, they must figure out if the novel is a comedy or a tragedy.
I find that scene quite funny because really there is such a fine line between comedy and tragedy. People often ask me how I can keep my sense of humor through all Bob and I have been through. But really, it's all about perspective, i.e.:
Now, of course, you know our story. The novel plot which I feel rather trapped in. Which starts with a "change" -- a stroke. And propels us on a journey with a goal to accomplish (recovery) and to continually confront many obstacles along the way.
Lately, it seems, I have reached E. in the above outline. Where a seemingly insurmountable obstacle has been thrown in the path. This being the "brachial plexus injury" causing Bob's head to drop and his whole body to sort of lean to the left. And I tell you, it has pretty much brought me to my knees...
Today, it's raining for the third day in a row. The rain is slow, steady, unceasing. The sky is dark with every imaginable shade of gray. The palm tree outside my window bows its head in the wind. A tropical storm is whirling out there, somewhere on the Gulf of Mexico, threatening to turn toward land. This is what Edgar Allan Poe called "the single effect theory": which is to make the environment match the mood of the hero/heroine. It's a nice touch.
The other night, when Bob was asleep, I went to the back porch to watch the rain. Then I stepped outside. Let the rain beat down on me. Literally, beat down on me. Until I was drenched. I don't know why I did this, I do know: it felt good.
A bit melodramatic all of that. But that would certainly make a good scene in a novel.
So the question comes down to this:
Stay tuned...
For those of you who don't know what I'm talking about, pretty much every movie you watch, or novel you read, follows this basic plot outline:
A. Start with a change and introduce the hero/heroine. Start with the minute, the day, the month that everything changes for our plucky, though slightly flawed, hero/heroine and propels him/her on a journey.
B. Give our hero/heroine a goal to accomplish.
C. Throw obstacles in the pathway.
D. Let our plucky, though slightly flawed, hero/heroine triumph over obstacles, then, after a brief respite, throw new obstacles in his/her path.
E. Keep our hero/heroine struggling, make it look as if he/she will reach their goal, let him/her triumph again and then, finally, throw one last seemingly insurmountable obstacle at them which brings our hero/heroine to their knees---and us to the climax where the audience will grip their seats...
F. Then let the hero/heroine triumph. Or not. It's the author's call here. But be sure our hero/heroine is somehow changed from the experience.
So that's it, the basic bones of a plot. And once you know that, it's kind of irksome because you begin to see it in every form of entertainment out there--be it a love story or a murder mystery.
One of my favorite movies is Stranger Than Fiction which stars Will Ferrell and Dustin Hoffman. In the movie, Ferrell plays a plucky, though slightly flawed, hero who discovers that he is a character in a novel with an unseen author narrating his every move. Then he realizes (through foreshadowing) that the author is planning kill him, so he must find her before she does. One of the best scenes is when he asks a professor of literature (Dustin Hoffman) for help, and the professor tells him that before they can find the author, they must figure out if the novel is a comedy or a tragedy.
I find that scene quite funny because really there is such a fine line between comedy and tragedy. People often ask me how I can keep my sense of humor through all Bob and I have been through. But really, it's all about perspective, i.e.:
Comedy: Someone slips on a banana peel.
Tragedy: YOU slip on a banana peel.*
(*Though in a week/month/year you will tell this story and be laughing your head off...)
(*Though in a week/month/year you will tell this story and be laughing your head off...)
Now, of course, you know our story. The novel plot which I feel rather trapped in. Which starts with a "change" -- a stroke. And propels us on a journey with a goal to accomplish (recovery) and to continually confront many obstacles along the way.
Lately, it seems, I have reached E. in the above outline. Where a seemingly insurmountable obstacle has been thrown in the path. This being the "brachial plexus injury" causing Bob's head to drop and his whole body to sort of lean to the left. And I tell you, it has pretty much brought me to my knees...
Today, it's raining for the third day in a row. The rain is slow, steady, unceasing. The sky is dark with every imaginable shade of gray. The palm tree outside my window bows its head in the wind. A tropical storm is whirling out there, somewhere on the Gulf of Mexico, threatening to turn toward land. This is what Edgar Allan Poe called "the single effect theory": which is to make the environment match the mood of the hero/heroine. It's a nice touch.
The other night, when Bob was asleep, I went to the back porch to watch the rain. Then I stepped outside. Let the rain beat down on me. Literally, beat down on me. Until I was drenched. I don't know why I did this, I do know: it felt good.
A bit melodramatic all of that. But that would certainly make a good scene in a novel.
So the question comes down to this:
Is this a comedy or a tragedy?
and
Will our plucky, though slightly flawed, heroine triumph? Or not?
Stay tuned...
Thursday, June 21, 2012
Doctors, Doctors, Doctors! GAA!
I tell you, I am so sick of doctors right now, I could just scream! We have two doctors' appointments this week, one last week, two next week and... I am just bone tired.
Bob has a neurologist, a urologist, an endocrinologist. He has a pain management doctor, a primary care doctor and an ear nose throat guy. Oh, and a gastrointestinal doctor. And they all want to see him every two months or three months or once a month (that's the pain doc). My Bob's a popular guy!
Do these doctors know how difficult it is to get to places in a wheelchair?? Do they know what a hassle it is? Do they know how expensive it is? Of course, they know the latter-- these are the guys with the brand new BMWs, waterfront condos and the european vacations. They wear shoes that cost more than my car.
On Tuesday, we saw the neurologist for about 2 seconds flat. Well, maybe I'm exaggerating a bit. But not much, because the whole visit took as long as it takes to say this:
That insightful appointment cost a $40.00 co-pay plus $8.00 for the wheelchair transport service. Not to mention it took all afternoon because--
To get there I had to schedule the wheelchair transport 45 minutes prior to the appointment time, 30 minutes for a "window" for the transport to arrive, plus 10 minutes of loading time and 5 minutes of drive time. The transport came on time, so we got there 30 minutes early. Then the doctor was running 55 minutes behind schedule, so I had to cancel our return trip and be put on "stand by" which means, basically, you call when you're ready then wait another 45 minutes for a van to show up. Not to mention another 30 minutes in the bathroom with Bob trying to pee and me, squished between the toilet and the paper towel dispenser, staring at the ceiling.
And do these doctors know how un-handicap accessible their handicap accessible bathrooms are???
Today, we are off to see the Ear Nose Throat doctor. yippee!
Well, that's my rant for the day. Bye!
Bob has a neurologist, a urologist, an endocrinologist. He has a pain management doctor, a primary care doctor and an ear nose throat guy. Oh, and a gastrointestinal doctor. And they all want to see him every two months or three months or once a month (that's the pain doc). My Bob's a popular guy!
Do these doctors know how difficult it is to get to places in a wheelchair?? Do they know what a hassle it is? Do they know how expensive it is? Of course, they know the latter-- these are the guys with the brand new BMWs, waterfront condos and the european vacations. They wear shoes that cost more than my car.
On Tuesday, we saw the neurologist for about 2 seconds flat. Well, maybe I'm exaggerating a bit. But not much, because the whole visit took as long as it takes to say this:
Dr: Did the Botox help Robert's arm?
Me: No.
Dr.: Hmm. Well, give it another week. Sometimes it's slow to respond.
Me: OK
Dr: See you in three months!
That insightful appointment cost a $40.00 co-pay plus $8.00 for the wheelchair transport service. Not to mention it took all afternoon because--
To get there I had to schedule the wheelchair transport 45 minutes prior to the appointment time, 30 minutes for a "window" for the transport to arrive, plus 10 minutes of loading time and 5 minutes of drive time. The transport came on time, so we got there 30 minutes early. Then the doctor was running 55 minutes behind schedule, so I had to cancel our return trip and be put on "stand by" which means, basically, you call when you're ready then wait another 45 minutes for a van to show up. Not to mention another 30 minutes in the bathroom with Bob trying to pee and me, squished between the toilet and the paper towel dispenser, staring at the ceiling.
And do these doctors know how un-handicap accessible their handicap accessible bathrooms are???
Today, we are off to see the Ear Nose Throat doctor. yippee!
Well, that's my rant for the day. Bye!
Saturday, June 16, 2012
A Conversation With Bob
Me: Today, we go to Pain Management. The transport will be here at 12:30.
Bob (looks at his watch): OK
Me: Last time, Stephanie said she would ask the doctor if he would increase your medication. Or if not, if there was a different medication you could try.
Bob: Right.
Me: But I need to know, would you want to change your medication?
Bob (touches his shoulder): The problem is here. (Touches his forearm) Not here.
Me: The doctor said the Botox shots in your arm were supposed to help your shoulder. I know it isn't working. We'll talk about that, too.
Bob: OK
Me: But I need to know, do you want to change your medication or just stay with the one you got?
Bob: I don't know.
Me: I don't know either. I'd hate to switch to something less effective. Though, maybe something else would work better.
Bob: You decide.
Me: OK. I guess I'll just see what she says. Play it by ear.
Bob: Exactly.
Me: Do you need to shave before we go?
Bob (feels his chin): Yes, shave.
Me: OK... Do you know what?
Bob: What?
Me: We just had a conversation. A real conversation!
Bob: I know.
Me: Wow. That was nice. And I understood everything you said!
Bob: Yes, that was nice.
Me: You know what? I sure do like talking to you!
Bob: I like talking to you, too!
I know, this rather dull conversation might not seem a big deal to some people, but that was the first real conversation we have had since the stroke. By that, I mean, that Bob responded to everything I said and I could understand him perfectly. He did not hesitate nor did he fumble for words and every response was appropriate. I tell you, I am just thrilled! He's come a long way, baby!
Bob (looks at his watch): OK
Me: Last time, Stephanie said she would ask the doctor if he would increase your medication. Or if not, if there was a different medication you could try.
Bob: Right.
Me: But I need to know, would you want to change your medication?
Bob (touches his shoulder): The problem is here. (Touches his forearm) Not here.
Me: The doctor said the Botox shots in your arm were supposed to help your shoulder. I know it isn't working. We'll talk about that, too.
Bob: OK
Me: But I need to know, do you want to change your medication or just stay with the one you got?
Bob: I don't know.
Me: I don't know either. I'd hate to switch to something less effective. Though, maybe something else would work better.
Bob: You decide.
Me: OK. I guess I'll just see what she says. Play it by ear.
Bob: Exactly.
Me: Do you need to shave before we go?
Bob (feels his chin): Yes, shave.
Me: OK... Do you know what?
Bob: What?
Me: We just had a conversation. A real conversation!
Bob: I know.
Me: Wow. That was nice. And I understood everything you said!
Bob: Yes, that was nice.
Me: You know what? I sure do like talking to you!
Bob: I like talking to you, too!
I know, this rather dull conversation might not seem a big deal to some people, but that was the first real conversation we have had since the stroke. By that, I mean, that Bob responded to everything I said and I could understand him perfectly. He did not hesitate nor did he fumble for words and every response was appropriate. I tell you, I am just thrilled! He's come a long way, baby!
Thursday, June 14, 2012
Engine
Here is the latest drawing by my left-handed (formerly right-handed) artist. He calls this one "Engine".
 |
| Engine by Bob (click to enlarge) |
Monday, June 11, 2012
The Man Without A Nose
This morning, I woke up in the middle of a bad dream. Which is not so much a "waking up" as being jolted, rocketed out of your sleep and, heart pounding, lurched into consciousness.
In the dream, I had just gotten married and was quite happy. I was following my newly betrothed down a pathway near the seaside, when he turned, grabbed my hand and began to tell me how very much he loved me. When I looked up at this man, this dream stranger, I was horrified to see that he didn't have a nose!
As I finished typing that last sentence, honestly, I laughed out loud, because it seems quite absurd. But I wasn't laughing in the dream. I was horrified and panicked. I couldn't believe that my new husband did not have a nose and that I, somehow, had never noticed this flaw before! In fact, not only did he not have a nose, in the place where a nose should be--was a gaping pink hole. The edges of this nose hole were jagged skin flaps, that undulated like octopus tentacles with each word he spoke.
And that's when I woke up in a heart pounding panic.
Now, I often wonder what a dream "means" not in any supernatural sense, but in the sense of what message my subconscious mind may be trying to send me. But early this morning, I could not make sense of it and chalked it up as one of those strange anxiety dreams.
Later, while walking the dog, I still could not shake this image of the man without a nose, and then it occurred to me that my dream was telling me that I had missed something "as plain as the nose on your face". And I sort of chuckled at that cliche. And immediately thought of that wheelchair. That tilt-in-space IRIS wheelchair which OT and the sales rep think would be so wonderful for Bob. Which looks not so much like a wheelchair but like a super-sized baby stroller.
Yesterday, I took out the IRIS wheelchair picture again and showed it to Bob hoping to glean an understandable response from him. But he only kept pointing to the footrests and saying "ankles". Now the footrests on this new wheelchair are of the same design as the footrests on his current wheelchair and I explained that to him. But he kept pointing at those footrests on the picture, then he pointing at his wheelchair footrests and saying, "better."
Bob's current wheelchair is a Quickie 2 Lite which is made by the same company that makes this IRIS wheelchair. And, I tell you, the footrests look exactly the same. I told Bob that, but he kept insisting his footrests were better. And we sort of went round for round and I was left just sort of frustrated and confused.
This morning, while walking the dog and thinking about that man without a nose and the wheelchair dilemma---it suddenly occurred to me what Bob meant. It's not the footrests themselves, but the position of the footrests in the photo (which is the same photo I posted here) and shows the chair tilted back. Bob was trying to tell me that he did not want to travel around in a wheelchair with his feet or "ankles" tilted up in the air.
When Boomer and I came home, I asked Bob if that was what he had meant, if he did not like the tilting feature of the new wheelchair and he said, "Exactly."
You know, it's Bob's wheelchair, so it's his decision, not mine--and certainly not the OT's or the wheelchair sales rep's decision.
So I've already called the sales rep this morning and left a message on his machine to cancel that order. I'm sure he won't be happy, but he's not the one who has to sit in the chair. I also asked him to call me back and set up a time he can come over, put Bob in his wheelchair and we can figure out how to make it more comfortable.
And I should've known that's what Bob had meant. I mean, it was right there, in the picture, plain as the nose on your face.
In the dream, I had just gotten married and was quite happy. I was following my newly betrothed down a pathway near the seaside, when he turned, grabbed my hand and began to tell me how very much he loved me. When I looked up at this man, this dream stranger, I was horrified to see that he didn't have a nose!
As I finished typing that last sentence, honestly, I laughed out loud, because it seems quite absurd. But I wasn't laughing in the dream. I was horrified and panicked. I couldn't believe that my new husband did not have a nose and that I, somehow, had never noticed this flaw before! In fact, not only did he not have a nose, in the place where a nose should be--was a gaping pink hole. The edges of this nose hole were jagged skin flaps, that undulated like octopus tentacles with each word he spoke.
And that's when I woke up in a heart pounding panic.
Now, I often wonder what a dream "means" not in any supernatural sense, but in the sense of what message my subconscious mind may be trying to send me. But early this morning, I could not make sense of it and chalked it up as one of those strange anxiety dreams.
Later, while walking the dog, I still could not shake this image of the man without a nose, and then it occurred to me that my dream was telling me that I had missed something "as plain as the nose on your face". And I sort of chuckled at that cliche. And immediately thought of that wheelchair. That tilt-in-space IRIS wheelchair which OT and the sales rep think would be so wonderful for Bob. Which looks not so much like a wheelchair but like a super-sized baby stroller.
Yesterday, I took out the IRIS wheelchair picture again and showed it to Bob hoping to glean an understandable response from him. But he only kept pointing to the footrests and saying "ankles". Now the footrests on this new wheelchair are of the same design as the footrests on his current wheelchair and I explained that to him. But he kept pointing at those footrests on the picture, then he pointing at his wheelchair footrests and saying, "better."
Bob's current wheelchair is a Quickie 2 Lite which is made by the same company that makes this IRIS wheelchair. And, I tell you, the footrests look exactly the same. I told Bob that, but he kept insisting his footrests were better. And we sort of went round for round and I was left just sort of frustrated and confused.
This morning, while walking the dog and thinking about that man without a nose and the wheelchair dilemma---it suddenly occurred to me what Bob meant. It's not the footrests themselves, but the position of the footrests in the photo (which is the same photo I posted here) and shows the chair tilted back. Bob was trying to tell me that he did not want to travel around in a wheelchair with his feet or "ankles" tilted up in the air.
When Boomer and I came home, I asked Bob if that was what he had meant, if he did not like the tilting feature of the new wheelchair and he said, "Exactly."
You know, it's Bob's wheelchair, so it's his decision, not mine--and certainly not the OT's or the wheelchair sales rep's decision.
So I've already called the sales rep this morning and left a message on his machine to cancel that order. I'm sure he won't be happy, but he's not the one who has to sit in the chair. I also asked him to call me back and set up a time he can come over, put Bob in his wheelchair and we can figure out how to make it more comfortable.
And I should've known that's what Bob had meant. I mean, it was right there, in the picture, plain as the nose on your face.
Saturday, June 9, 2012
Wheelchair Dilemma
Recently, Bob's neurologist ordered a "wheelchair evaluation". The idea was to find a way to make Bob's wheelchair more comfortable now that he has developed these neck and shoulder issues. I had sort of thought we'd be looking at something to add onto his wheelchair, like a head rest or a different kind of back support but...
The wheechair guy came over yesterday, along with Bob's OT, and together they decided the best option would be to order an entirely different wheelchair for Bob. It's called a "tilt in space" manual wheelchair that can be reclined all the way back to ease the pressure off his neck and shoulders and it looks like this:
The wheelchair sales rep told me that if the insurance would approve this chair, we could "trade" Bob's old wheelchair in to cover the co-pay.
Now I can see the benefits a wheelchair like this may have, especially for Bob's neck issues, and it might very well be more comfortable than his current chair but the more I look at this thing, the more depressed I get.
Because really, doesn't that look like a wheelchair for a severely handicapped person?
I know, I know, Bob is severely disabled. But truthfully, I do not like to think of him that way.
And it feels like such a big step backward for Bob, who is still working hard at his walking and standing practice.
This chair also has a few drawbacks. One is that you cannot break it down to throw it in the car if I needed or wanted to take Bob somewhere quickly. So we would be rather stuck always taking the wheelchair transport service which requires a 24 hour notice. And lose our independence.
And because of the small wheels, Bob could not propel it himself (which he is getting better at with his current chair). So I would be stuck always pushing him around.
And it's rather ugly.
The OT and the wheelchair rep really pressured me into making a decision and I told them to go ahead and start the process for the insurance approval.
But now, I'm having second thoughts. I don't know if getting this new chair is the right thing to do... When I try to talk to Bob about it, aphasia is getting the way as usual and I'm not sure what his opinion on the matter is. I guess I have the weekend to think this through.
I would certainly appreciate anyone's thoughts on this.
The wheechair guy came over yesterday, along with Bob's OT, and together they decided the best option would be to order an entirely different wheelchair for Bob. It's called a "tilt in space" manual wheelchair that can be reclined all the way back to ease the pressure off his neck and shoulders and it looks like this:
Now I can see the benefits a wheelchair like this may have, especially for Bob's neck issues, and it might very well be more comfortable than his current chair but the more I look at this thing, the more depressed I get.
Because really, doesn't that look like a wheelchair for a severely handicapped person?
I know, I know, Bob is severely disabled. But truthfully, I do not like to think of him that way.
And it feels like such a big step backward for Bob, who is still working hard at his walking and standing practice.
This chair also has a few drawbacks. One is that you cannot break it down to throw it in the car if I needed or wanted to take Bob somewhere quickly. So we would be rather stuck always taking the wheelchair transport service which requires a 24 hour notice. And lose our independence.
And because of the small wheels, Bob could not propel it himself (which he is getting better at with his current chair). So I would be stuck always pushing him around.
And it's rather ugly.
The OT and the wheelchair rep really pressured me into making a decision and I told them to go ahead and start the process for the insurance approval.
But now, I'm having second thoughts. I don't know if getting this new chair is the right thing to do... When I try to talk to Bob about it, aphasia is getting the way as usual and I'm not sure what his opinion on the matter is. I guess I have the weekend to think this through.
I would certainly appreciate anyone's thoughts on this.
Wednesday, June 6, 2012
Unmechanical Me
Yesterday, I nearly chopped my hand off, at the wrist, with Bob's hospital bed. Now to understand how exactly someone could do such a thing, how a hospital bed can turn into a deadly weapon or how anyone could manage to get into this precarious situation, one must understand this one thing about me. Which is this: I am totally unmechanical.
Pre-stroke, Bob was Mr. Fix-It and he was great at it. The guy could build anything, fix anything. And he used to love tinkering with things like vintage 1930's radios and such. Me, on the other hand, cannot drive a nail into a board without bending the nail and smashing my thumb with the hammer, to boot. And don't even ask me about mechanical things, like the car or the toilet or a vintage radio. In my perfect world, those things are just supposed to work when you turn the key, or flip the switch, or flush the handle.
I remember the time when I killed The Green Machine's battery. It was when Bob first came home from the hospital, in that chaotic first month, when my dryer broke and our laundry room was filled with piles of urine-soaked bedding and me, I was a total basketcase trying to learn how to take care of him. That day, I had gotten a call from his doctor's office telling me they had just called in a prescription to the pharmacy. That day it was also raining.
Now I hate driving The Green Machine in the rain for two reasons. 1) only one windshield wiper works and 2) the headlights don't always come on... These things of course would have been fixed, if Bob was still in charge, but alas, I have lost my Mr. Fix-It and The Green Machine suffers dearly for it. But I jumped in the car that day, figuring Bob needed this prescription and the pharmacy is only seven blocks away and I drove off in a light rain with one wiper squeaking against the windshield and not sure if the headlights were on or off even though I had flipped the switch.
I got the prescription and I got back home. The minute I pulled into the driveway that light rain turned into a fierce downpour. So I hurriedly parked the car and dashed into the house. And in the process, you guessed it, I left the headlights on and the keys in the ignition.
I didn't realize what I had done until the next morning when I was looking for my car keys and couldn't find them. And, of course, I went outside and found The Green Machine with the keys in the ignition and the battery completely dead.
This rather freaked me out. Because I had never jumped a car battery in my entire life. I, of course, had seen in done and I knew Bob had this thing called a "jump box" which is used for this purpose. So I opened the trunk and dug out the jump box and looked at it. Now Bob's jump box is not just a jump box but also an air compressor and it has an emergency light on it, I guess, so you can jump things at night. It has various strange gauges and a ton of complicated looking buttons and switches on it. But, like the trooper I am, I went and opened up the hood of the car and looked inside at the battery. Then, I looked at the jump box. Then, tentatively, very tentatively, I tried to attach the cables of that jump box to the battery. Nothing happened. I didn't know what to do next, or even if I had hooked the darn thing up right. Then, I had a vision of me turning the key in the ignition and blowing the whole engine up. So I took the cables off. I believe that's when I started to cry.
What I did next was probably grounds for insanity. Because I took that jump box into the house. I took it right to Bob, lying in his hospital bed, because I didn't know what else to do. Now, back then, Bob could barely speak two words. Mostly he just babbled undecipherable things. But I was desperate and I showed him that jump box and tearfully told him what had happened. And I asked him if he could tell me how the jump box worked.
Bob pointed at the jump box and said, "Car!"
Well, a lot of darn help that was.
But I was, like I said, desperate. So, I got Bob out of bed and into his wheelchair. I rolled him out the backdoor and down the wheelchair ramp to the driveway to where The Green Machine sat, with its hood still up. I went back into the house to fetch the jump box. When I came back out, tears still streaming down my cheeks, I asked Bob if he could possibly, possibly show me what to do.
And you know what? He did!
He pointed at the cables then at the battery, indicating which cable went where. He even reached in with his good hand and adjusted one of the cables. He pointed to the button which would turn on the battery charger part of the jump box. I asked him, "what next?" because I wasn't sure if we had to wait for it to charge or if I should start the car...
He made a noise like a car starting, i.e.: "VROOOM! VROOM!"
I tell you, that was the day I gained the courage and strength, the faith and hope, I needed to continue on this long journey of stroke recovery. Because that was the day I knew, I mean I really knew, that Bob was still in there. Bob had not left the building, so to speak. He was there, in there! And he could think! Which really I had wondered about before that moment.
Anyway, I have totally digressed off the topic of my plight with the hospital bed. And you're wondering about that. This is what happened:
Yesterday, I had just washed Bob's hair and left him in the kitchen with a towel to dry off while I went to change the sheets on his bed. Bob has a "semi-electric" hospital bed, meaning the head of the bed and the foot of the bed can be elevated by pushing a button. I was lowering the head of the bed when it jammed. Just sort of got stuck. At first, I thought maybe it was an electrical problem, but I could raise the head of the bed, just not lower it. So something must be jamming it. A long while back, the service guy from the bed company had me put two plywood boards, under the mattress, on the springs to keep the bed from sagging, and I figured one of the boards must have shifted and was in the way. So I pulled all the sheets etc. off and then pulled the heavy mattress and gel overlay to the side and looked at the boards, and sure enough, one was askew. I straightened it and put the mattress back, but when I attempted to lower the head of the bed, it was still stuck. hmmmm.
So I got down on my hands and knees and peered under the bed to see what might have gotten in the way. That's when I noticed that the head of the bed was caught on the edge of the sofa. Aha! So I pulled the bed toward me, away from the sofa, and that's when the head of the bed came crashing down.
Right on top of my wrist.
Sort of trapping my right arm between the steel bed rails.
And man, did that hurt!
With my left hand, I fumbled to find the remote thingy that raises and lowers the bed. I found it and managed to raise the head of the bed off my arm.
Then I collapsed to the floor, screaming in pain. Honest to God, I thought I had shattered my wrist. It hurt so bad. And there was poor Bob, two rooms away in the kitchen, hearing all this commotion.
But I realized, as I lay on the floor, that I could, in fact, move my fingers. I could move my hand, even bend the wrist. So nothing was broken. And after I recovered my wits, I went into the kitchen to get a cold compress for my wrist. Bob was still sitting there, staring at me wide-eyed. I told him what had happened. Then I said, "Man, I was scared."
Bob said, "I was scared, too."
Which, by the way, is a very good sentence.
I tell you, someone is watching over me. Because today, my wrist is only a little sore. And it could have been a lot worse.
Pre-stroke, Bob was Mr. Fix-It and he was great at it. The guy could build anything, fix anything. And he used to love tinkering with things like vintage 1930's radios and such. Me, on the other hand, cannot drive a nail into a board without bending the nail and smashing my thumb with the hammer, to boot. And don't even ask me about mechanical things, like the car or the toilet or a vintage radio. In my perfect world, those things are just supposed to work when you turn the key, or flip the switch, or flush the handle.
I remember the time when I killed The Green Machine's battery. It was when Bob first came home from the hospital, in that chaotic first month, when my dryer broke and our laundry room was filled with piles of urine-soaked bedding and me, I was a total basketcase trying to learn how to take care of him. That day, I had gotten a call from his doctor's office telling me they had just called in a prescription to the pharmacy. That day it was also raining.
Now I hate driving The Green Machine in the rain for two reasons. 1) only one windshield wiper works and 2) the headlights don't always come on... These things of course would have been fixed, if Bob was still in charge, but alas, I have lost my Mr. Fix-It and The Green Machine suffers dearly for it. But I jumped in the car that day, figuring Bob needed this prescription and the pharmacy is only seven blocks away and I drove off in a light rain with one wiper squeaking against the windshield and not sure if the headlights were on or off even though I had flipped the switch.
I got the prescription and I got back home. The minute I pulled into the driveway that light rain turned into a fierce downpour. So I hurriedly parked the car and dashed into the house. And in the process, you guessed it, I left the headlights on and the keys in the ignition.
I didn't realize what I had done until the next morning when I was looking for my car keys and couldn't find them. And, of course, I went outside and found The Green Machine with the keys in the ignition and the battery completely dead.
This rather freaked me out. Because I had never jumped a car battery in my entire life. I, of course, had seen in done and I knew Bob had this thing called a "jump box" which is used for this purpose. So I opened the trunk and dug out the jump box and looked at it. Now Bob's jump box is not just a jump box but also an air compressor and it has an emergency light on it, I guess, so you can jump things at night. It has various strange gauges and a ton of complicated looking buttons and switches on it. But, like the trooper I am, I went and opened up the hood of the car and looked inside at the battery. Then, I looked at the jump box. Then, tentatively, very tentatively, I tried to attach the cables of that jump box to the battery. Nothing happened. I didn't know what to do next, or even if I had hooked the darn thing up right. Then, I had a vision of me turning the key in the ignition and blowing the whole engine up. So I took the cables off. I believe that's when I started to cry.
What I did next was probably grounds for insanity. Because I took that jump box into the house. I took it right to Bob, lying in his hospital bed, because I didn't know what else to do. Now, back then, Bob could barely speak two words. Mostly he just babbled undecipherable things. But I was desperate and I showed him that jump box and tearfully told him what had happened. And I asked him if he could tell me how the jump box worked.
Bob pointed at the jump box and said, "Car!"
Well, a lot of darn help that was.
But I was, like I said, desperate. So, I got Bob out of bed and into his wheelchair. I rolled him out the backdoor and down the wheelchair ramp to the driveway to where The Green Machine sat, with its hood still up. I went back into the house to fetch the jump box. When I came back out, tears still streaming down my cheeks, I asked Bob if he could possibly, possibly show me what to do.
And you know what? He did!
He pointed at the cables then at the battery, indicating which cable went where. He even reached in with his good hand and adjusted one of the cables. He pointed to the button which would turn on the battery charger part of the jump box. I asked him, "what next?" because I wasn't sure if we had to wait for it to charge or if I should start the car...
He made a noise like a car starting, i.e.: "VROOOM! VROOM!"
I tell you, that was the day I gained the courage and strength, the faith and hope, I needed to continue on this long journey of stroke recovery. Because that was the day I knew, I mean I really knew, that Bob was still in there. Bob had not left the building, so to speak. He was there, in there! And he could think! Which really I had wondered about before that moment.
Anyway, I have totally digressed off the topic of my plight with the hospital bed. And you're wondering about that. This is what happened:
Yesterday, I had just washed Bob's hair and left him in the kitchen with a towel to dry off while I went to change the sheets on his bed. Bob has a "semi-electric" hospital bed, meaning the head of the bed and the foot of the bed can be elevated by pushing a button. I was lowering the head of the bed when it jammed. Just sort of got stuck. At first, I thought maybe it was an electrical problem, but I could raise the head of the bed, just not lower it. So something must be jamming it. A long while back, the service guy from the bed company had me put two plywood boards, under the mattress, on the springs to keep the bed from sagging, and I figured one of the boards must have shifted and was in the way. So I pulled all the sheets etc. off and then pulled the heavy mattress and gel overlay to the side and looked at the boards, and sure enough, one was askew. I straightened it and put the mattress back, but when I attempted to lower the head of the bed, it was still stuck. hmmmm.
So I got down on my hands and knees and peered under the bed to see what might have gotten in the way. That's when I noticed that the head of the bed was caught on the edge of the sofa. Aha! So I pulled the bed toward me, away from the sofa, and that's when the head of the bed came crashing down.
Right on top of my wrist.
Sort of trapping my right arm between the steel bed rails.
And man, did that hurt!
With my left hand, I fumbled to find the remote thingy that raises and lowers the bed. I found it and managed to raise the head of the bed off my arm.
Then I collapsed to the floor, screaming in pain. Honest to God, I thought I had shattered my wrist. It hurt so bad. And there was poor Bob, two rooms away in the kitchen, hearing all this commotion.
But I realized, as I lay on the floor, that I could, in fact, move my fingers. I could move my hand, even bend the wrist. So nothing was broken. And after I recovered my wits, I went into the kitchen to get a cold compress for my wrist. Bob was still sitting there, staring at me wide-eyed. I told him what had happened. Then I said, "Man, I was scared."
Bob said, "I was scared, too."
Which, by the way, is a very good sentence.
I tell you, someone is watching over me. Because today, my wrist is only a little sore. And it could have been a lot worse.
Friday, June 1, 2012
The Purpose of Speech Therapy
I think the hardest thing for me to deal with post-stroke is aphasia and Bob's inability to speak. That's saying a lot, since most of you know, I have quite a bit to deal with, in fact, you would not have wanted to be at The Pink House yesterday, when there was not one, not two, but three (count them) bowel movements and the last two were complete surprises: one all over the bed and the other landing smack dab into a pair of real underwear. GAA! I tell you, right now, there is a perfectly good pair of real underwear headed to the local landfill because I could just not deal with it. You'd think my gag reflex would be better by now, but alas, it is not. But I have digressed. I was talking about speech therapy.
Since those first post-stroke months, when Bob could not utter a word, only make sounds--sort of garbles and gurgles, I knew he was trying to speak. To get the words out. As a writer, the ability to communicate is far more important to me than, say, the ability to use the bathroom. And so, since those first days, it has been a long and constant struggle to find Bob's speech, to unlock his words.
For a long time, I've been searching for that magic key that would unlock those words. Pretty much I've been trying every type of therapy technique I could get my hands on. Certainly since the "professional" speech therapists have given up on Bob saying that his "prognosis was poor" or he was "functional" enough, I have been trying harder than ever to prove those saps wrong.
This morning, I woke to the sound of rain on the roof. And I thought, well, I won't be taking the dog on a long walk in this weather, so I rolled over figuring I had bought myself a little nap time. When I heard Bob, from the next room, call to me:
That's me he's calling for. I am sometimes known around here as "Hey? um, hey?" But I figured I'd just ignore him, pretend to be sleeping and catch a few more winks. But then he said,
I nearly bolted upright in bed, not because the sun was up and that meant I should have my butt out of bed by now, but because that was a very good, spontaneous sentence. And Bob's main problem area now is saying anything spontaneous, i.e. those type of sentences which just express what's on his mind.
I recently ordered a copy of the book "The Teaching of Talking" by Mark Ittleman, who is a speech pathologist. Though I haven't even finished reading this book, the one thing I gleaned so far (though the author never really states it) is that the whole purpose of speech therapy is this: keep him talking. However you can, just keep him talking.
I think I've always known that. I know I've always done that. But now, it seems totally clear to me that all along this is the "magic key" I've been searching for and it's been right in front of me, heck I've been doing it all along, and it's really quite simple:
One of the techniques to make it "easy" in Ittleman's book is asking the "embedded question". This is basically a question with the answer already embedded in it. For example, instead of asking, "What flavor pudding would you like tonight?", I instead should ask, "Would you like chocolate or vanilla pudding?" That way the answer is already stated, the words are right there hanging in the air, and Bob doesn't have to search his mind for the word "vanilla" because "vanilla" is floating in the air in front of him--he only has to grab onto it and say it.
Bob is very good at repeating things. He can and will repeat something exactly as I say it. Right down to the tone of my voice. And if I, trying to be funny, say something in a silly Chinese accent, he will repeat it back in the same silly Chinese accent. So using "embedded questions" has really helped Bob find the right words.
Another of Ittleman's techniques is what the author calls the "Tell me" phrase. This is all about repeating, so Bob is also very good with this technique. The idea here is to get Bob to say more words than he usually does. Here's an example:
Bob: "Up." (which I already know means he wants to be boosted up in bed, but instead of just helping him boost up, I get him to say more words, like this:)
Me: "Do you need a boost?"
Bob: "Yes, boost."
Me: "Tell me, I want a boost, please."
Bob: "I want a boost."
Me: "Please."
Bob: "Please."
I have been working on this technique with Bob daily now for awhile. You can pretty much do this type of thing all day long. I suppose I tend to overdo this, and I'm sure that somedays I am downright irritating to Bob, though I no longer have to give him the "tell me" phrase, I can just ask him for a sentence, as in this example from yesterday while I was giving Bob's morning meds through the feeding tube:
Bob: "Up."
Me: "Do you need a boost?"
Bob: "Yes, boost."
Me: "Give me a sentence."
Bob: "I want a boost, please."
Me: "Good."
Bob: "And, um..." points to his mouth and says "ow."
Me: "You need some pain medication?"
Bob: "Medication."
Me: "Tell me, I want a boost and some medication."
Bob (rolls his eyes), "Oh, puh-leeease."
OK, I tend to push it. But the nice thing about these techniques is I can sort of integrate it all through the day and not feel bad on those days we don't have time to sit down for a proper hour of "speech therapy". As we are now doing neck stretching exercises 3 times daily, and having regular OT visits, time is at a premium.
Recently, both my sister and Bob's mother had an opportunity to speak on the phone with Bob and both said, afterward, that they thought his speech has definitely improved from the last time they spoke to him. Seems he's had a bit of a breakthrough speech-wise.
Even though it's raining here at the Pink House today and things have been mighty hard, as someone said this morning:
Since those first post-stroke months, when Bob could not utter a word, only make sounds--sort of garbles and gurgles, I knew he was trying to speak. To get the words out. As a writer, the ability to communicate is far more important to me than, say, the ability to use the bathroom. And so, since those first days, it has been a long and constant struggle to find Bob's speech, to unlock his words.
For a long time, I've been searching for that magic key that would unlock those words. Pretty much I've been trying every type of therapy technique I could get my hands on. Certainly since the "professional" speech therapists have given up on Bob saying that his "prognosis was poor" or he was "functional" enough, I have been trying harder than ever to prove those saps wrong.
This morning, I woke to the sound of rain on the roof. And I thought, well, I won't be taking the dog on a long walk in this weather, so I rolled over figuring I had bought myself a little nap time. When I heard Bob, from the next room, call to me:
"Hey? um, hey?"
That's me he's calling for. I am sometimes known around here as "Hey? um, hey?" But I figured I'd just ignore him, pretend to be sleeping and catch a few more winks. But then he said,
"Hey! The sun is up!"
I nearly bolted upright in bed, not because the sun was up and that meant I should have my butt out of bed by now, but because that was a very good, spontaneous sentence. And Bob's main problem area now is saying anything spontaneous, i.e. those type of sentences which just express what's on his mind.
I recently ordered a copy of the book "The Teaching of Talking" by Mark Ittleman, who is a speech pathologist. Though I haven't even finished reading this book, the one thing I gleaned so far (though the author never really states it) is that the whole purpose of speech therapy is this: keep him talking. However you can, just keep him talking.
I think I've always known that. I know I've always done that. But now, it seems totally clear to me that all along this is the "magic key" I've been searching for and it's been right in front of me, heck I've been doing it all along, and it's really quite simple:
Just keep him talking.
And make it as easy and fun as possible.
One of the techniques to make it "easy" in Ittleman's book is asking the "embedded question". This is basically a question with the answer already embedded in it. For example, instead of asking, "What flavor pudding would you like tonight?", I instead should ask, "Would you like chocolate or vanilla pudding?" That way the answer is already stated, the words are right there hanging in the air, and Bob doesn't have to search his mind for the word "vanilla" because "vanilla" is floating in the air in front of him--he only has to grab onto it and say it.
Bob is very good at repeating things. He can and will repeat something exactly as I say it. Right down to the tone of my voice. And if I, trying to be funny, say something in a silly Chinese accent, he will repeat it back in the same silly Chinese accent. So using "embedded questions" has really helped Bob find the right words.
Another of Ittleman's techniques is what the author calls the "Tell me" phrase. This is all about repeating, so Bob is also very good with this technique. The idea here is to get Bob to say more words than he usually does. Here's an example:
Bob: "Up." (which I already know means he wants to be boosted up in bed, but instead of just helping him boost up, I get him to say more words, like this:)
Me: "Do you need a boost?"
Bob: "Yes, boost."
Me: "Tell me, I want a boost, please."
Bob: "I want a boost."
Me: "Please."
Bob: "Please."
I have been working on this technique with Bob daily now for awhile. You can pretty much do this type of thing all day long. I suppose I tend to overdo this, and I'm sure that somedays I am downright irritating to Bob, though I no longer have to give him the "tell me" phrase, I can just ask him for a sentence, as in this example from yesterday while I was giving Bob's morning meds through the feeding tube:
Bob: "Up."
Me: "Do you need a boost?"
Bob: "Yes, boost."
Me: "Give me a sentence."
Bob: "I want a boost, please."
Me: "Good."
Bob: "And, um..." points to his mouth and says "ow."
Me: "You need some pain medication?"
Bob: "Medication."
Me: "Tell me, I want a boost and some medication."
Bob (rolls his eyes), "Oh, puh-leeease."
OK, I tend to push it. But the nice thing about these techniques is I can sort of integrate it all through the day and not feel bad on those days we don't have time to sit down for a proper hour of "speech therapy". As we are now doing neck stretching exercises 3 times daily, and having regular OT visits, time is at a premium.
Recently, both my sister and Bob's mother had an opportunity to speak on the phone with Bob and both said, afterward, that they thought his speech has definitely improved from the last time they spoke to him. Seems he's had a bit of a breakthrough speech-wise.
Even though it's raining here at the Pink House today and things have been mighty hard, as someone said this morning:
Hey! The sun is up!
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