When I started this blog, I made myself a promise which was to tell the truth, to write an honest blog. I mean, that's what writers do, tell the truth and the truth will set you free--right? Well, some things I am not so proud of, and the other night was no exception. But here it is, the whole truth.
It had been one of those nights and I snapped. Had a regular melt down. I think because it had been such a rough week and I am stressed and worried that Rehab won't let Bob continue and the fact that he seems to be getting worse instead of better and why the hell isn't that bladder medication "kicking in"???
Anyway, it was the second time I was up that night with Bob, changing the sheets, and this time it was a mess: a bigger mess than usual. And I'm up to my elbows in urine and diarrhea, it's so bad that I start to gag. Have to run out of the room because I think I'm going to throw up. That's when I snapped. And I screamed at him. You know how it is, when you're mad and frustrated and you scream, I mean really scream, at-the-top-of-your-lungs, at the one you love. And you say just awful things. Well, that's what I did. I screamed: I wish I never married you! I wish we never met!
Oh lord. The minute, no--the instant it was out of my mouth, I regretted it. And poor Bob cannot defend himself. I mean, normally he would have lashed back out at me. You know how it is, we've been married 16 years and we've had a few battles. Normally, he would tossed some equally terrible insult back at me. But he can't do that, anymore. Poor guy can hardly talk, let alone fight back. My only hope was that maybe, just maybe, he didn't understand what I said. Because sometimes it's hard to tell just how much he understands. One doctor had told me his aphasia was both "expressive" and "receptive", so who knows how much he understands? So that was my hope, that maybe he didn't understand what I screamed. Maybe, just maybe, it went right over his head. So, I calmed down, got him cleaned up and put back to bed and the next morning, after I got him bathed and dressed and up in the wheelchair, he looked at me with these sad, sad eyes and said two words, "You? Marry?"
Damn. He understood.
I tell you, it about broke my heart. I felt like such a heel. Such a total shit. Of course, I apologized. Told him I didn't mean it, was just stressed out, etc. etc. Because you know, I love that guy. I love him so much.
So that's it. The whole truth. The ugly truth. I know, sometimes I get pretty nitty-gritty in this blog. But I started this blog because people kept telling me to "do something for yourself" and I kept thinking, like what? It's not like we have the money to go shopping or whatever. Or the time. And who would take care of Bob if I went out??? So here it is. Ugly as it is. That's how it is, taking care of a stroke survivor. Sometimes, it's not pretty. Sometimes, the only thing that keeps me sane is this blog...
But then, there are nights, after I hook up his nightly feeding pump, I pull a comfortable chair beside his bed and we watch a movie together, and sometimes he grabs my hand with his left hand. Really squeezes tight. He lifts our hands in the air and does sort of a swishing hand dance, back and forth. When he does that, I just melt. And I am so happy, so very happy that he is alive and with me and we can hand-dance in the air together. I love him so much. God, I'm such a shithead.
Tuesday, May 31, 2011
Sunday, May 29, 2011
It's Been a Rough Week...
And I'm glad it's over. After that awful Wednesday (see previous post), the next day at Rehab went a bit better in that Bob was feeling better, but when he got on the parallel bars--it was a catastrophe. Suddenly, both knees began to buckle (even his "good" leg, the "unaffected" side) so it was as if he was stuck in a position that looked like he was perpetually about to sit down. And he couldn't stand up any straighter. That was combined with wobbling back and forth and complaints of pain in both legs. PT had to be cut short. I don't know why he had this sudden set back.
The other two therapies weren't much better, mostly because both his OT and ST were off for the day, so he had substitutes. Bob just doesn't work well with people he doesn't know. He gave the OT a particularly hard time, I think on purpose. For example, she showed him a picture of her pet cat and asked Bob what it was, and Bob replied that it was "a snake". When she told him that it was not a "snake" but a "cat" whose name was (I think) "Tracker", Bob still insisted that Tracker was "a snake". So, she asked him what kind of snake Tracker was, to which he shrugged, and she asked if Tracker was a "python" and Bob said, "yes, python." Then she asked him if we had pets and he told her that we had "snakes" and began to laugh. Oh dear.
Speech therapy didn't go much better. This therapist was a bit too "perky" for my taste. I mean, after everything that Bob did or said, she would reply "Good Job!". Well, actually, it was more like "Goooood! Jaaaahb!" And this said in a very high pitched, overly enthusiastic voice. And she did this even when he screwed up. Part of the therapy was for Bob to complete a sentence, and it went like this:
Therapist: I want to go....
Bob: to the bathroom. (probably the truth, here, with all the bladder problems)
Therapist: Goooood! Jaaahb! Turn on the...
Bob: the radio.
Therapist: Gooooood! Jaaaahb! It's time to eat...
Bob: the radio.
Therapist: Goooood! Jaaahb! My wife's name is...
Bob, in a high pitched, overly enthusiastic voice: Diiiiie! Aaaaaannnne!
Therapist: Gooood! Jaaahb!
All righty. I was certainly glad to go home. Next week, Bob has another evaluation at Rehab and I do hope this past week is not going screw everything up. It's frustrating because he was doing so well (except for all the bathroom breaks) prior to this week.
The other two therapies weren't much better, mostly because both his OT and ST were off for the day, so he had substitutes. Bob just doesn't work well with people he doesn't know. He gave the OT a particularly hard time, I think on purpose. For example, she showed him a picture of her pet cat and asked Bob what it was, and Bob replied that it was "a snake". When she told him that it was not a "snake" but a "cat" whose name was (I think) "Tracker", Bob still insisted that Tracker was "a snake". So, she asked him what kind of snake Tracker was, to which he shrugged, and she asked if Tracker was a "python" and Bob said, "yes, python." Then she asked him if we had pets and he told her that we had "snakes" and began to laugh. Oh dear.
Speech therapy didn't go much better. This therapist was a bit too "perky" for my taste. I mean, after everything that Bob did or said, she would reply "Good Job!". Well, actually, it was more like "Goooood! Jaaaahb!" And this said in a very high pitched, overly enthusiastic voice. And she did this even when he screwed up. Part of the therapy was for Bob to complete a sentence, and it went like this:
Therapist: I want to go....
Bob: to the bathroom. (probably the truth, here, with all the bladder problems)
Therapist: Goooood! Jaaahb! Turn on the...
Bob: the radio.
Therapist: Gooooood! Jaaaahb! It's time to eat...
Bob: the radio.
Therapist: Goooood! Jaaahb! My wife's name is...
Bob, in a high pitched, overly enthusiastic voice: Diiiiie! Aaaaaannnne!
Therapist: Gooood! Jaaahb!
All righty. I was certainly glad to go home. Next week, Bob has another evaluation at Rehab and I do hope this past week is not going screw everything up. It's frustrating because he was doing so well (except for all the bathroom breaks) prior to this week.
Thursday, May 26, 2011
Nightmare at Rehab
Yesterday was horrible. It started out okay, but when we got to Rehab, Bob had to immediately go to the bathroom. This is not unusual dealing with the neurogenic bladder problems that he has had, but once crammed inside the public restroom, while he was trying to urinate, he began to have a bowel movement.
This has been my worse fear, that he would have a bowel movement while we are "out and about", and I would have to change that kind of diaper while he's sitting in the wheelchair. I thought I was prepared, but honestly, I was not prepared for this. When he indicated he was done, I ripped the diaper down the sides thinking this would be the easiest way to remove a mess, and had him lift his seat up off the chair as high as he could, but lo and behold, there was nothing there. Which was odd. Because it certainly looked as if he had accomplished something. I could tell he was terribly uncomfortable and growing more so, by the second. On closer inspection, I found that a rock hard stool was stuck--half in and half out, as it were. And Lord almighty, if I didn't have to go in there myself and free him up. (Memo to myself: bring latex gloves!) When I finally got him clear, he still couldn't urinate. And he still seemed to have do the other, too. So, we're in the bathroom, clock ticking away, and it's closer and closer to his appointment time, and he is upset and growing more agitated by the minute, until he's finally crying. And I'm worried because I've ripped one good diaper and now have the other on him and he may soil that one too (Second memo to myself: bring more diapers!), but I finally get him settled down and dressed again, and we arrive for his appointment five minutes late.
I wheel him into the therapy room and we are greeted by his PT, but immediately Bob begins to cry and wants to return the bathroom. So, I take him into the bathroom, where he tries to urinate again with no luck and after ten minutes, we give up and go back to the therapist who is waiting for us. I am still worried about running out of diapers, so I decide to go across the street to the hospital where there is a small pharmacy, hoping they might have some there. So, I leave Bob with the therapist and head to the pharmacy only to find that they only stock women's Depends (weird) and only size "small" (even more weird), so I return empty-handed to find that Bob and Therapist are--gone.
I look all over but can't find them. Then, it hits. Oh no. I go to the restroom and there they are, the poor therapist trying to help Bob while he tries to urinate once again and Bob is (once again) in tears. The therapist takes me aside and tells me that he tried to get Bob to do some therapy, but Bob was too agitated and kept pointing at his crotch, so that's how they ended up in the bathroom. Then, the therapist says that if Bob is "medically unstable" they will have to discharge him from therapy. That they cannot work with a patient who is "medically unstable" and maybe I should think of having him sent to a hospital or nursing home where they can do inpatient therapy?
Lord, lord, lord. So, now I am freaking out. You know that Bob has been to the urologist who has prescribed a medication called Vesicare, which I am told takes 2 weeks to a month "kick in" and today it will have been three weeks, but the stuff does not seem to be working, or more correctly, I thought it was working at least somewhat, Bob did seem a little better, until all this happened.
So, to make a long story (somewhat) shorter, we spent the first full 45 minutes of therapy in the bathroom. He still could not go. And he was terribly upset, so I asked him if he just wanted to cancel the rest of the therapy sessions and go home, but he insisted on staying. And somehow we got through the day, with several unproductive trips to the bathroom. And finally, we got home. And I'm remembering the last time he had a spell like this, he couldn't urinate at all and at the same time was constipated, and I was almost ready to take him to the emergency ward to have him cathed, but then, he had a bowel movement and it was like an explosion on both ends. So, we got home and I dosed him with some milk of magnesia and about midnight, he had his "explosion" and finally went, all over, from both ends, which was quite a relief. In the middle of the night, he called me and presented me with an urinal that nearly overflowed to the top. So, I think he got it all out. We see his urologist again, in about two weeks, and I wish it were sooner, but I suppose the medication does take time to take effect....
Lord. If ain't one thing, it's another. We have Rehab again today and I am praying that things will go better.
This has been my worse fear, that he would have a bowel movement while we are "out and about", and I would have to change that kind of diaper while he's sitting in the wheelchair. I thought I was prepared, but honestly, I was not prepared for this. When he indicated he was done, I ripped the diaper down the sides thinking this would be the easiest way to remove a mess, and had him lift his seat up off the chair as high as he could, but lo and behold, there was nothing there. Which was odd. Because it certainly looked as if he had accomplished something. I could tell he was terribly uncomfortable and growing more so, by the second. On closer inspection, I found that a rock hard stool was stuck--half in and half out, as it were. And Lord almighty, if I didn't have to go in there myself and free him up. (Memo to myself: bring latex gloves!) When I finally got him clear, he still couldn't urinate. And he still seemed to have do the other, too. So, we're in the bathroom, clock ticking away, and it's closer and closer to his appointment time, and he is upset and growing more agitated by the minute, until he's finally crying. And I'm worried because I've ripped one good diaper and now have the other on him and he may soil that one too (Second memo to myself: bring more diapers!), but I finally get him settled down and dressed again, and we arrive for his appointment five minutes late.
I wheel him into the therapy room and we are greeted by his PT, but immediately Bob begins to cry and wants to return the bathroom. So, I take him into the bathroom, where he tries to urinate again with no luck and after ten minutes, we give up and go back to the therapist who is waiting for us. I am still worried about running out of diapers, so I decide to go across the street to the hospital where there is a small pharmacy, hoping they might have some there. So, I leave Bob with the therapist and head to the pharmacy only to find that they only stock women's Depends (weird) and only size "small" (even more weird), so I return empty-handed to find that Bob and Therapist are--gone.
I look all over but can't find them. Then, it hits. Oh no. I go to the restroom and there they are, the poor therapist trying to help Bob while he tries to urinate once again and Bob is (once again) in tears. The therapist takes me aside and tells me that he tried to get Bob to do some therapy, but Bob was too agitated and kept pointing at his crotch, so that's how they ended up in the bathroom. Then, the therapist says that if Bob is "medically unstable" they will have to discharge him from therapy. That they cannot work with a patient who is "medically unstable" and maybe I should think of having him sent to a hospital or nursing home where they can do inpatient therapy?
Lord, lord, lord. So, now I am freaking out. You know that Bob has been to the urologist who has prescribed a medication called Vesicare, which I am told takes 2 weeks to a month "kick in" and today it will have been three weeks, but the stuff does not seem to be working, or more correctly, I thought it was working at least somewhat, Bob did seem a little better, until all this happened.
So, to make a long story (somewhat) shorter, we spent the first full 45 minutes of therapy in the bathroom. He still could not go. And he was terribly upset, so I asked him if he just wanted to cancel the rest of the therapy sessions and go home, but he insisted on staying. And somehow we got through the day, with several unproductive trips to the bathroom. And finally, we got home. And I'm remembering the last time he had a spell like this, he couldn't urinate at all and at the same time was constipated, and I was almost ready to take him to the emergency ward to have him cathed, but then, he had a bowel movement and it was like an explosion on both ends. So, we got home and I dosed him with some milk of magnesia and about midnight, he had his "explosion" and finally went, all over, from both ends, which was quite a relief. In the middle of the night, he called me and presented me with an urinal that nearly overflowed to the top. So, I think he got it all out. We see his urologist again, in about two weeks, and I wish it were sooner, but I suppose the medication does take time to take effect....
Lord. If ain't one thing, it's another. We have Rehab again today and I am praying that things will go better.
Tuesday, May 24, 2011
Bob & The Bionic Arm
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| Bob & The Bioness Device |
Sunday, May 22, 2011
Not Enough Time in a Day
Every time we go to Rehab, the therapists always ask if we are doing our "at home exercises", or if we are practicing this or that skill. And of course, I smile and say "yes!" But....
Somedays there's just not enough time to do everything we are expected to do. I mean, he has two sets of leg exercises, one done in bed and the other sitting up in his wheelchair, and we do 30 reps each and this alone can take about two hours. Then, there's the arm exercises with a full range of motion plus stretching and the mirror therapy. And don't forget the tongue exercises for swallowing. And the speech exercises: "Da Da, Ka Ka" and so on, and also practice saying the days of the week, the months of the year and counting to twenty. And, please, do this several times a day. In addition to all of that, he's to practice putting on and taking of a t-shirt, and don't forget to practice reading and writing. And maybe you can get him to draw with his left hand, Diane? And of course we should do the flash cards and practice naming objects. And also name the body parts, you know, fingers, toes, hands. And I'm supposed to get him to play a game or two that directs his attention to the right side: these games involve picking up objects and placing them to the far right. And play some other game, cards or scrabble, it's good for his brain. And add to that a bed bath and three bolus tube feedings and three times a day crush and dissolve his medications and syringe them in the feeding tube. And get him out of bed with the slide board and into the wheelchair and push him outside for a change of air and view. And be sure to massage his right arm and shoulder and put lotion on his legs. And wash his hair, involving a trip to the kitchen sink and a pretty big mess afterwards. Don't forget laundry and changing the sheets. Oh, change those diapers too, several times. And make him something to practice eating with, that involves cooking and dishes. And 7:00 p.m. the nightly 12 hour enteral feeding on the pump needs to be started. Right now, I'm looking out the window and the lawn needs to be mowed, weeds need to be pulled and there are dead palm fronds hanging from the trees, so someone should get out there with a ladder and cut them down, and really, I should water the garden and don't forget to vacuum and dust the house and pay those bills, feed the cats, walk the dog, hassle with the insurance company and call in those prescription refills and then, somehow, get to the pharmacy to pick them up..... Then I'm told, you should really get him out of the house, to the mall or the beach, make him feel "normal" again. And don't forget, to take some time for yourself, Diane, so you don't burn out. Ga!
Lord almighty, how does anyone do it all? I begin to feel guilty because I can't do it all. I begin to feel I'm not really cut out for this caregiver role. And it will be all my fault if he doesn't recover because I just can't seem to find enough time in a day to do everything we are supposed to do in order for him to get better.
I guess I'm feeling a bit overwhelmed this morning.
Somedays there's just not enough time to do everything we are expected to do. I mean, he has two sets of leg exercises, one done in bed and the other sitting up in his wheelchair, and we do 30 reps each and this alone can take about two hours. Then, there's the arm exercises with a full range of motion plus stretching and the mirror therapy. And don't forget the tongue exercises for swallowing. And the speech exercises: "Da Da, Ka Ka" and so on, and also practice saying the days of the week, the months of the year and counting to twenty. And, please, do this several times a day. In addition to all of that, he's to practice putting on and taking of a t-shirt, and don't forget to practice reading and writing. And maybe you can get him to draw with his left hand, Diane? And of course we should do the flash cards and practice naming objects. And also name the body parts, you know, fingers, toes, hands. And I'm supposed to get him to play a game or two that directs his attention to the right side: these games involve picking up objects and placing them to the far right. And play some other game, cards or scrabble, it's good for his brain. And add to that a bed bath and three bolus tube feedings and three times a day crush and dissolve his medications and syringe them in the feeding tube. And get him out of bed with the slide board and into the wheelchair and push him outside for a change of air and view. And be sure to massage his right arm and shoulder and put lotion on his legs. And wash his hair, involving a trip to the kitchen sink and a pretty big mess afterwards. Don't forget laundry and changing the sheets. Oh, change those diapers too, several times. And make him something to practice eating with, that involves cooking and dishes. And 7:00 p.m. the nightly 12 hour enteral feeding on the pump needs to be started. Right now, I'm looking out the window and the lawn needs to be mowed, weeds need to be pulled and there are dead palm fronds hanging from the trees, so someone should get out there with a ladder and cut them down, and really, I should water the garden and don't forget to vacuum and dust the house and pay those bills, feed the cats, walk the dog, hassle with the insurance company and call in those prescription refills and then, somehow, get to the pharmacy to pick them up..... Then I'm told, you should really get him out of the house, to the mall or the beach, make him feel "normal" again. And don't forget, to take some time for yourself, Diane, so you don't burn out. Ga!
Lord almighty, how does anyone do it all? I begin to feel guilty because I can't do it all. I begin to feel I'm not really cut out for this caregiver role. And it will be all my fault if he doesn't recover because I just can't seem to find enough time in a day to do everything we are supposed to do in order for him to get better.
I guess I'm feeling a bit overwhelmed this morning.
Saturday, May 21, 2011
Bioness Machine, Take 2
We went back to Rehab and had another go with a Bioness machine. After my initial freaking out, I had been wondering if it was a problem with the machine and not necessarily with Bob's nerves and I guess the OT had the same idea. She brought out a different Bioness (it turns out they have two of these) and decided to try that one on Bob. This machine also had a different setting. The first machine was set to a pulse-stop-pulse-stop sort of stimulation and the second machine was set for three pulses, i.e. pulse-pulse-pulse-stop-pulse-pulse-pulse.
So, once again, he was hooked up and this time, when she turned it on, wa la!, his fingers did indeed flex! In fact, they flexed so hard that Bob cried out in pain, so she had to turn the machine down. But, that too is good, since it has seemed that Bob has had no sensation at all in that hand and, well, pain is a sensation, after all.
You can imagine how relieved I am.
Unfortunately, shortly after she started the Bioness machine, it ran out of battery charge but she has promised to recharge it this weekend so we can have a go of it again, next week.
So, once again, he was hooked up and this time, when she turned it on, wa la!, his fingers did indeed flex! In fact, they flexed so hard that Bob cried out in pain, so she had to turn the machine down. But, that too is good, since it has seemed that Bob has had no sensation at all in that hand and, well, pain is a sensation, after all.
You can imagine how relieved I am.
Unfortunately, shortly after she started the Bioness machine, it ran out of battery charge but she has promised to recharge it this weekend so we can have a go of it again, next week.
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