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.
Thursday, May 19, 2011
Trouble With That Right Arm
Yesterday at Rehab, we had a case management meeting to go over Bob's progress, etc. I had been doing some reading/researching and had learned about a technique of using electrical stimulation on the hand to sort of "jump start" movement in not only the hand but the arm, as well. So far, everything that's been tried with his right arm/hand has been a dismal failure, and so, I asked if they could try the e-stim on his hand. I was happy when they agreed to give it a go and quite excited to find that they had a Bioness machine. This machine (which costs about 6 grand) is a "electrical stimulation orthotic", it fits around the forearm and produces electrical stimulation to the muscles that move the hand. I had actually seen a video of this on the internet and the device is pretty cool, and basically the patient's hand will begin to open and close on its own accord. So you can imagine my anticipation when we went in for Bob's occupational therapy session.
The therapist connected Bob's forearm to the device and turned it on and ta da! ---- nothing happened. So, she took it off thinking the electrodes were not connecting with his skin and refastened it and tried again. Again -- nothing. So, off came the machine and different electrodes put on it and it was refastened a third time. Another therapist was brought in to help troubleshoot. This time, they jacked it up all the way to the highest setting, played around with the different "exercise modes" and there was a barely noticeable flinch in his thumb. A flinch. And that was it.
Damn.
This was just such a crushing blow. The therapist think that he might have some kind of nerve damage in his arm. Nerve damage. And now I am worried, has the CIDP kicked back in? Or what?
It seems I was more crushed even than Bob, who gave me a look which could only be interpreted as Well, what did you expect?
Perhaps, I do expect too much. Right now, it seems as if his arm is stuck forever in "Stage 2" of Brunnstrom's Recovery Stages. He has spasticity in his hand (it clenches into a fist, sometimes fiercely) but the rest of his arm is just sort of hanging there, limp.
We do have a follow-up appointment with his neurologist in a couple of weeks and of course I will ask him about this, but it feels as if we've exhausted every known therapy for that arm without any results. And I am feeling pretty much helpless as to what to do or try next....
The therapist connected Bob's forearm to the device and turned it on and ta da! ---- nothing happened. So, she took it off thinking the electrodes were not connecting with his skin and refastened it and tried again. Again -- nothing. So, off came the machine and different electrodes put on it and it was refastened a third time. Another therapist was brought in to help troubleshoot. This time, they jacked it up all the way to the highest setting, played around with the different "exercise modes" and there was a barely noticeable flinch in his thumb. A flinch. And that was it.
Damn.
This was just such a crushing blow. The therapist think that he might have some kind of nerve damage in his arm. Nerve damage. And now I am worried, has the CIDP kicked back in? Or what?
It seems I was more crushed even than Bob, who gave me a look which could only be interpreted as Well, what did you expect?
Perhaps, I do expect too much. Right now, it seems as if his arm is stuck forever in "Stage 2" of Brunnstrom's Recovery Stages. He has spasticity in his hand (it clenches into a fist, sometimes fiercely) but the rest of his arm is just sort of hanging there, limp.
We do have a follow-up appointment with his neurologist in a couple of weeks and of course I will ask him about this, but it feels as if we've exhausted every known therapy for that arm without any results. And I am feeling pretty much helpless as to what to do or try next....
Monday, May 16, 2011
Post-Stroke Depression & Anxiety: Meds & Mashed Potatoes
This morning, Bob woke up crying. I was disconnecting his nightly feeding pump and heard him say,"trapped, trapped." I asked him what was wrong, but all he kept saying is that one word: "trapped".
Those of you who know Bob know that he's always been a "happy-go-lucky" sort. Always, he looks at the bright side. He's the optimist in the family, a good balance for me: the chronic pessimist. I think that the one of the things that attracted me to him in the first place was his attitude and his sense of humor. He never fails to make me laugh. He's picked me up off the ground, so many times I cannot count them, especially when dealing with rejections from my writing. Even when he was in the hospital after the stroke, after the he "woke up", he would charm the nurses by making funny expressions and gestures, or by singing, loud: one arm flung in the air. He could always carry a tune well, even though, with the aphasia, the words no longer made sense. So many of the nurses would tell me, "Bob just cracks me up."
I remember at that last hospital, the acute rehab hospital, a doctor came into his room one day and introduced himself as a "neuro psychiatrist" and I remember thinking that was a pretty weird speciality. The doctor asked Bob if he was depressed, to which Bob answered "no". This doctor looked at me and said, "Well, if I were him, I'd be depressed. I'll prescribe him something, anyway." And so, Bob came home with a prescription for the anti-depressant Cymbalta.
That first month, I was learning how to manage his feeding tube. All his medications have to be crushed in a pill crusher, then dissolved in water and syringed into his tube. But Cymbalta is a capsule and when you open it, it's filled with hard little pellets that defy the pill crusher. And if you pour it in water, the pellets just float around, then get sticky and stick to the side of the syringe. I was having a heck of a time trying to get this stuff in him and I remembered what Bob had told that doctor, that he wasn't depressed, so I asked his primary care doc if it was OK to discontinue the Cymbalta and he said it was. And things were all right for a while.
A month ago, Bob started showing signs of depression and anxiety. He would burst into tears for seemingly no reason and often wake up crying. So I asked his primary care doctor what to do last month and he put him back on the Cymbalta. So, once again, here I am trying to get this damnable stuff down his tube. And the tube keeps clogging and I have to squirt Coca Cola into his tube to unclog it. Half the time, the stuff doesn't even get into the tube, just sticks to the side of the syringe. And one time, it clogged the tube so bad that it backed up and I ended up with Coca Cola and Cymbalta pellets sprayed onto the ceiling. So, I go on the internet thinking there must be some trick to this and maybe I'll find out what it is, and when I google "cymbalta+feeding tube" the first site that comes up is the NIH with a FDA warning to not administer Cymbalta through a feeding tube that doing so can cause adverse reactions. So, of course, I freak out and call his doctor's office and explain everything to the nurse, who leaves me on hold forever, then comes back on the line and tells me that she talked with the doctor who said not to worry about it, but to continue giving it to him. And I'm thinking, what?! I express my concerns to her but she tells me that if the hospital prescribed it, they certainly know that it's safe. Well....
I'm then in the situation where I'm afraid to give him this stuff and afraid not to. Because his depression/anxiety attacks are getting worse. The next week, he had an appointment to see his endrocrinologist, Dr. P., who is a very good doctor and he's been seeing Bob for over eight years and knows us both well. So, I ask Dr. P. about the Cymbalta and show him a print out from the FDA and Dr. P. tells me to immediately discontinue this drug and prescribes, instead, Ativan. The Ativan does mellow Bob out, but the effects are not long lasting. It's more of an anti-anxiety drug than an anti-depressant. And often, in the mornings, when he wakes up, before his first medication dose, he is crying.
This morning it was "trapped, trapped". I cannot imagine what it must feel like, to feel trapped. In your own body. Or maybe I can. I gave him his morning meds and he is resting comfortably right now. But some days, it's just hard. For the both of us.
Now I find that I have to be optimist in the family. No small feat for me! So, I'll try to look on the bright side. We have rehab today. He's been doing well with that. And last night, he ate a whole scoop of mashed potatoes with gravy without a single problem! So, the word of the day is "mashed potatoes" (I guess, technically, that's two words, but as Bob would say: "whatever") and I leave you all with that thought.
Those of you who know Bob know that he's always been a "happy-go-lucky" sort. Always, he looks at the bright side. He's the optimist in the family, a good balance for me: the chronic pessimist. I think that the one of the things that attracted me to him in the first place was his attitude and his sense of humor. He never fails to make me laugh. He's picked me up off the ground, so many times I cannot count them, especially when dealing with rejections from my writing. Even when he was in the hospital after the stroke, after the he "woke up", he would charm the nurses by making funny expressions and gestures, or by singing, loud: one arm flung in the air. He could always carry a tune well, even though, with the aphasia, the words no longer made sense. So many of the nurses would tell me, "Bob just cracks me up."
I remember at that last hospital, the acute rehab hospital, a doctor came into his room one day and introduced himself as a "neuro psychiatrist" and I remember thinking that was a pretty weird speciality. The doctor asked Bob if he was depressed, to which Bob answered "no". This doctor looked at me and said, "Well, if I were him, I'd be depressed. I'll prescribe him something, anyway." And so, Bob came home with a prescription for the anti-depressant Cymbalta.
That first month, I was learning how to manage his feeding tube. All his medications have to be crushed in a pill crusher, then dissolved in water and syringed into his tube. But Cymbalta is a capsule and when you open it, it's filled with hard little pellets that defy the pill crusher. And if you pour it in water, the pellets just float around, then get sticky and stick to the side of the syringe. I was having a heck of a time trying to get this stuff in him and I remembered what Bob had told that doctor, that he wasn't depressed, so I asked his primary care doc if it was OK to discontinue the Cymbalta and he said it was. And things were all right for a while.
A month ago, Bob started showing signs of depression and anxiety. He would burst into tears for seemingly no reason and often wake up crying. So I asked his primary care doctor what to do last month and he put him back on the Cymbalta. So, once again, here I am trying to get this damnable stuff down his tube. And the tube keeps clogging and I have to squirt Coca Cola into his tube to unclog it. Half the time, the stuff doesn't even get into the tube, just sticks to the side of the syringe. And one time, it clogged the tube so bad that it backed up and I ended up with Coca Cola and Cymbalta pellets sprayed onto the ceiling. So, I go on the internet thinking there must be some trick to this and maybe I'll find out what it is, and when I google "cymbalta+feeding tube" the first site that comes up is the NIH with a FDA warning to not administer Cymbalta through a feeding tube that doing so can cause adverse reactions. So, of course, I freak out and call his doctor's office and explain everything to the nurse, who leaves me on hold forever, then comes back on the line and tells me that she talked with the doctor who said not to worry about it, but to continue giving it to him. And I'm thinking, what?! I express my concerns to her but she tells me that if the hospital prescribed it, they certainly know that it's safe. Well....
I'm then in the situation where I'm afraid to give him this stuff and afraid not to. Because his depression/anxiety attacks are getting worse. The next week, he had an appointment to see his endrocrinologist, Dr. P., who is a very good doctor and he's been seeing Bob for over eight years and knows us both well. So, I ask Dr. P. about the Cymbalta and show him a print out from the FDA and Dr. P. tells me to immediately discontinue this drug and prescribes, instead, Ativan. The Ativan does mellow Bob out, but the effects are not long lasting. It's more of an anti-anxiety drug than an anti-depressant. And often, in the mornings, when he wakes up, before his first medication dose, he is crying.
This morning it was "trapped, trapped". I cannot imagine what it must feel like, to feel trapped. In your own body. Or maybe I can. I gave him his morning meds and he is resting comfortably right now. But some days, it's just hard. For the both of us.
Now I find that I have to be optimist in the family. No small feat for me! So, I'll try to look on the bright side. We have rehab today. He's been doing well with that. And last night, he ate a whole scoop of mashed potatoes with gravy without a single problem! So, the word of the day is "mashed potatoes" (I guess, technically, that's two words, but as Bob would say: "whatever") and I leave you all with that thought.
Saturday, May 14, 2011
Mirror Therapy
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| Bob & Mirror Therapy |
Bob's Occupational Therapist made him this "mirror box" although it isn't a box, it's a spiral notebook with a mirror pasted on it.
The idea here is to create an illusion that his right hand is moving and this will trick his brain into thinking the hand/arm is moving, and (hopefully) the hand/arm will begin to move.
He's supposed to do this ten minutes a day.
Friday, May 13, 2011
Friday the 13th Woes
Blogger (the host site for my blog) had some major problems today. All blogs were down this the morning and some posts disappeared (including my last one! aargh). They are up and running now, but my lost post hasn't reappeared even though they promised to "restore" any lost posts. Other than that, it's been a crappy day. Chris, my neighbor, was going to sit with Bob so I could run some errands this morning, but she overslept, and after I finally woke her up, after two promises to be right over, she got sick. A whole morning's plan wasted. So, everything got behind schedule and when I finally got Bob up, bathed and in the wheelchair it was already 1:30. I was behind on tube feedings, meds, everything. Then, he wanted to go immediately back to bed (had to pee) (yes, we are still dealing with this), so back in bed he went, then he spent the entire afternoon trying to urinate. The urologist gave him a new medication, but the stuff takes two weeks or more to "kick in", and he's only been on it a week now. At 2:00, I attempted to do another tube feeding but when I was checking for residuals (you have to put the syringe in the tube and pull back to see if the last feeding has been digested) the syringe popped out and sprayed Bob and the bed and me with half-digested Jevity and stomach acid. This just after I had bathed him, changed the sheets, etc. aaaargh. Finally, he peed at 4:00, but then he was cranky and not wanting to do any therapy.
So, all in all, not a good day. I am typing this fast, just wanting to put a post up to see if it's working!! Also, to let you know there were problems on this site today. Hopefully, my last post will reappear. It was about perseverance, apraxia and aphasia....... If it does, it should be below this one.
Tomorrow's another day.....
So, all in all, not a good day. I am typing this fast, just wanting to put a post up to see if it's working!! Also, to let you know there were problems on this site today. Hopefully, my last post will reappear. It was about perseverance, apraxia and aphasia....... If it does, it should be below this one.
Tomorrow's another day.....
Thursday, May 12, 2011
Aphasia: Perseveration & Apraxia
Big words, those. And something that we've been dealing with a lot in Speech Therapy. A year ago, I would not have known their meanings, so here's a brief definition for those who don't:
Although, I certainly see the "perseveration". He tends to get stuck on a word or phrase and keeps repeating it. Especially when we use flash cards. He'll identify a picture correctly as a "monkey", then when he's shown the next flash card, a picture of a fish, he'll tell you it too is a "monkey". And three cards later, he is still saying "monkey". It's almost as if he's stuck in loop.
As far as "apraxia" is concerned, the therapists seem sure that Bob suffers from this, but I'm not so sure. By demonstration, they will ask him to "put your finger on your chin" or "point to the floor", to which Bob will just stare at them blankly. "Motor planning" is the ability to follow commands. The therapists tell me that although Bob "knows" what they mean, he cannot make his hand move to his chin or his finger point the floor. But then, if they demonstrate the action to him, i.e. the therapist puts her finger on her chin, he can mimic her.... so what's with that? I wonder if it's that he doesn't understand what the words "finger", "chin", "point" and "floor" mean. I point this out to the therapist, and I'm told that it's probably a combination of both not understanding the words and the inability to motor plan.
He can count to ten. He can sing the ABC's. However, if you show him ABCD etc. written down, he cannot identify the letters. He is anomic, meaning he has difficulty naming objects. He can't seem to remember the days of the week, except for Monday & Friday. He can't remember his own birthday, or the address of our house, however, lately, he's become a backseat driver in the wheelchair transport, shouting out directions to the driver: i.e. "Left! Left!" Which is a very good thing!
I think, in a way, the Speech therapy is the hardest of all three therapies. I asked the therapist if the goal here was to "relearn" everything, i.e. reading, writing, speaking or are we looking for a "magic key" that will somehow unlock his brain and things will come back to him? She told me we're searching for that "magic key"....
Where, oh where, is that magic key?
- Aphasia: inability to communicate due to brain injury or disease.
- Perseveration: continued repetition of a word or phrase
- Apraxia: loss of motor planning
Although, I certainly see the "perseveration". He tends to get stuck on a word or phrase and keeps repeating it. Especially when we use flash cards. He'll identify a picture correctly as a "monkey", then when he's shown the next flash card, a picture of a fish, he'll tell you it too is a "monkey". And three cards later, he is still saying "monkey". It's almost as if he's stuck in loop.
As far as "apraxia" is concerned, the therapists seem sure that Bob suffers from this, but I'm not so sure. By demonstration, they will ask him to "put your finger on your chin" or "point to the floor", to which Bob will just stare at them blankly. "Motor planning" is the ability to follow commands. The therapists tell me that although Bob "knows" what they mean, he cannot make his hand move to his chin or his finger point the floor. But then, if they demonstrate the action to him, i.e. the therapist puts her finger on her chin, he can mimic her.... so what's with that? I wonder if it's that he doesn't understand what the words "finger", "chin", "point" and "floor" mean. I point this out to the therapist, and I'm told that it's probably a combination of both not understanding the words and the inability to motor plan.
He can count to ten. He can sing the ABC's. However, if you show him ABCD etc. written down, he cannot identify the letters. He is anomic, meaning he has difficulty naming objects. He can't seem to remember the days of the week, except for Monday & Friday. He can't remember his own birthday, or the address of our house, however, lately, he's become a backseat driver in the wheelchair transport, shouting out directions to the driver: i.e. "Left! Left!" Which is a very good thing!
I think, in a way, the Speech therapy is the hardest of all three therapies. I asked the therapist if the goal here was to "relearn" everything, i.e. reading, writing, speaking or are we looking for a "magic key" that will somehow unlock his brain and things will come back to him? She told me we're searching for that "magic key"....
Where, oh where, is that magic key?
Sunday, May 8, 2011
Clip Art Notebook: Need Some Advice
Here's my quandary: The Speech Therapist wants us to put together a notebook for Bob. This notebook would contain pictures (mostly clip art) of everyday objects or people and also words like "yes" and "no". The idea here is that Bob could point to a picture of what he wanted, for example, if he wanted a tissue, he could point to a picture of a box of tissues. Or if you asked him a question, instead of saying "yes" or "no," he could point to the word. This is supposed to make life easier for him and she has made these personalized notebooks for a number of her patients and thinks it's a great idea and it will help him communicate better.
All right.
I am not so sure about this. My concern is that if he has such a notebook, he may not try to speak the words because it's easier to point at a picture. I am worried this would be more of a hindrance to his recovery than a help. Am I wrong? Am I just being stubborn? Am I in denial?
I know there are a lot of wise women (and men) out there reading this blog and I would like some advice on this dilemma. I need to hear some other opinions. What do you think?? Would this be a help or a hinderance? What would you do? Let me know by leaving a comment. Thanks.
All right.
I am not so sure about this. My concern is that if he has such a notebook, he may not try to speak the words because it's easier to point at a picture. I am worried this would be more of a hindrance to his recovery than a help. Am I wrong? Am I just being stubborn? Am I in denial?
I know there are a lot of wise women (and men) out there reading this blog and I would like some advice on this dilemma. I need to hear some other opinions. What do you think?? Would this be a help or a hinderance? What would you do? Let me know by leaving a comment. Thanks.
Thursday, May 5, 2011
Rehab Approved For Another Month
Yes! We got the good news yesterday and a new schedule for rehab going through June 3rd (another eval. due then). All three therapists were on-board and all three said they were seeing progress. phew! I was worried, especially about OT.
The Physical Therapists actually think they can get Bob out of the parallel bars and walking around the room in a couple of weeks! Wow. Although, I was warned "it won't be a pretty sight." Believe me, it will be a pretty sight, for me, at least. (I'll have to get my camera ready!) They are going to try either a specialized walker or a shopping cart. Yes, you read that right. A shopping cart. And when I first heard this, I thought it was a joke, but evidently they do have a shopping cart at Rehab and the idea here is that if the patient has balance problems like Bob does and the patient leans too far forward with a walker, the walker can run away from them, so they use a shopping cart loaded down with weights to keep it steady. And he may have to wear a leg brace--still having problems with that right knee buckling, and I know Bob doesn't like that idea.... One of the Physical Therapists told me that "quite frankly" they were ready to give up on Bob and discharge him a few weeks back (after that wilted flower imitation at the standing machine), that they thought he'd never come around and then he asked me what happened? What did I say to Bob to get him motivated? Ha ha! (See earlier posts, "Rehab Says Shape Up or Ship Out" and "Up & Down, Up & Down again")
Unfortunately, the Occupational Therapist is giving up on the E-stim for his right arm. Not seeing any improvement there, and she's going to concentrate now on "life skills" meaning, learning to live one-armed. yikes. Seems a bit of a cop out, but I asked her to work on his reading/writing skills, because he really needs help in that area and she said she would. Also, I think she'll continue the mirror therapy. And I'll just have to do more right arm therapy here at home with him.
Speech/Swallow Therapy told me to start giving Bob "treats" to eat at home for swallow practice. So, I guess I'll be the one pushing a shopping cart--looking for something he likes, but mushy enough for him to get down. She wants to hold off on another Swallow Video for a few weeks. She does think he might be ready for one, but wants to play it safe and is waiting to see more improvement. Right now, he certainly isn't ready to "eat a meal".
So! Good news pretty much on all fronts. We are off to see the urologist today and hopefully he'll have some good news too.
The Physical Therapists actually think they can get Bob out of the parallel bars and walking around the room in a couple of weeks! Wow. Although, I was warned "it won't be a pretty sight." Believe me, it will be a pretty sight, for me, at least. (I'll have to get my camera ready!) They are going to try either a specialized walker or a shopping cart. Yes, you read that right. A shopping cart. And when I first heard this, I thought it was a joke, but evidently they do have a shopping cart at Rehab and the idea here is that if the patient has balance problems like Bob does and the patient leans too far forward with a walker, the walker can run away from them, so they use a shopping cart loaded down with weights to keep it steady. And he may have to wear a leg brace--still having problems with that right knee buckling, and I know Bob doesn't like that idea.... One of the Physical Therapists told me that "quite frankly" they were ready to give up on Bob and discharge him a few weeks back (after that wilted flower imitation at the standing machine), that they thought he'd never come around and then he asked me what happened? What did I say to Bob to get him motivated? Ha ha! (See earlier posts, "Rehab Says Shape Up or Ship Out" and "Up & Down, Up & Down again")
Unfortunately, the Occupational Therapist is giving up on the E-stim for his right arm. Not seeing any improvement there, and she's going to concentrate now on "life skills" meaning, learning to live one-armed. yikes. Seems a bit of a cop out, but I asked her to work on his reading/writing skills, because he really needs help in that area and she said she would. Also, I think she'll continue the mirror therapy. And I'll just have to do more right arm therapy here at home with him.
Speech/Swallow Therapy told me to start giving Bob "treats" to eat at home for swallow practice. So, I guess I'll be the one pushing a shopping cart--looking for something he likes, but mushy enough for him to get down. She wants to hold off on another Swallow Video for a few weeks. She does think he might be ready for one, but wants to play it safe and is waiting to see more improvement. Right now, he certainly isn't ready to "eat a meal".
So! Good news pretty much on all fronts. We are off to see the urologist today and hopefully he'll have some good news too.
Tuesday, May 3, 2011
Urodynamic Test Explains A Lot
Yesterday, I took Bob back to the Urologist for a "urodynamic" test. This was not a pleasant ordeal. The examination table for this test looks like a cross between a dental chair and a toilet, on a hydraulic lift. They had to lift Bob onto this contraption because there was no way to slide him onto it with a slide board. Then, they ran a catheter into his bladder and a second one into his rectum and attached several electrodes and everything was hooked to a strange machine which made a terrible squeaking noise. After he was hooked up, they poured water into his bladder and the computer monitored his bladder function. Poor Bob. The test was done by a technician, not the doctor, but she did share some of the results. Seems that he cannot completely empty his bladder, that he is always retaining about 100 cc of fluid (this is about 4 oz) and that is what is causing his constant "urge" to go. Also, his pelvic floor is contracting instead of relaxing as it should. She also found pus, meaning he still has an infection. She was unsure whether these problems were caused from the stroke or the infection. We see the doctor on Thursday. Hopefully, there is something he can do to give Bob some relief (and me, too.)
After that, we hustled home so that I could give Bob a tube feeding and some medicines, then went to Rehab where Bob took some big steps on the bars and even asked to go on "the bicycle"--meaning the Nu Step machine. The phrase "the bicycle" is a big improvement from what he used to call the Nu Step which was "carrots".... I was pleased that Bob did so well at Rehab especially after the ordeal at the Urologist. I had tried to reschedule the rehab appointment because I thought it would be too much for him in one day, but they had no other openings. I tell you, my guy is a trooper.
After that, we hustled home so that I could give Bob a tube feeding and some medicines, then went to Rehab where Bob took some big steps on the bars and even asked to go on "the bicycle"--meaning the Nu Step machine. The phrase "the bicycle" is a big improvement from what he used to call the Nu Step which was "carrots".... I was pleased that Bob did so well at Rehab especially after the ordeal at the Urologist. I had tried to reschedule the rehab appointment because I thought it would be too much for him in one day, but they had no other openings. I tell you, my guy is a trooper.
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