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.

Bob & The Bionic Arm

Bob & The Bioness Device

Yesterday at Rehab, Bob worked again with the Bioness stimulator on his arm. Amazing enough, he really seems to enjoy this therapy. I think because he can actually feel the electrical stimulation and prior to this, he has had a lack of sensation in that arm and hand.  He liked it so well, he asked for it to be put on again, after they had completed the first session.

He was also being a real ham. Goofing around and making funny gestures and faces. It was nice to see this "old Bob" back again!

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.

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.

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....

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.