July 7, 2006 (another minimally edited entry)

If you read the current version of the reportage in the blog of the happenings of July 6th, you may note that one paragraph – the one that summarizes why I think I sometimes overextend in caregiving – has undergone more-than-grammatical changes since it was originally posted on the morning of July 8th. I think the changes I made give a more accurate reflection of reality. If you get these updates by email and not by going to the blog, you would have to go to the blog and find the entry to see the differences. If you really, really want to ;-)


Well, it had seemed a good idea to make my third chiropractor appointment of the week on Friday, so it would be a MWF schedule, but as the chiropractor only works in the morning on Friday’s, and Gary’s first class was at 9, I had to take the 8:30 appt. Given my problem with having appointments scheduled for first thing in the morning, this added to my stress, not subtracted from it. From now on I will take late afternoon appts on MWTh, even if that’s not the ideal schedule.

I got to Gary’s and the first thing he said to me was, “Good news, my 9 o’clock class was cancelled”; I told him that would have been better news had I known of that beforehand so I could have slept in – not that he knew beforehand. He dozed a bit, and then we called a nurse to watch us do the bed transfer. Thinking I would find it easier to do it from behind him, as I did on the exercise mat, I tried that, but because of the difference in surfaces, I somehow torqued my back. So my chiropractic adjustment lasted less than an hour.

The nurse wasn’t impressed with our transfer, saying it was “scratchy,” that Gary came down too hard and that I should have been in front (which I agreed with, but not for the reason she gave). Gary commented when she left that he knew that the goal was for him to come down more controlled, but the important thing for now was to make sure he landed in the chair, not to concentrate on the finesse of the landing at the expense of missing his target. The greater control will come with practice and with getting stronger so that he can use his arm muscles to let himself down more slowly.

We toodled off to our first family training session of the day, this one with the rec therapist. She asked him how he’d enjoyed the various classes in rec therapy – gardening, weight room, golf equipment. She encouraged him to keep up with the various activities. She gave him lots of brochures. The first was on the Adventure Skills Outing, which takes place yearly in Jackson Gap, Al., near Lake Martin. We’d seen a video on that in one of the rec classes (one of the interesting parts of it ;-)), and it looked kind of like an “Outward Bound” for those with SCIs. Gary indicated some interest in doing that.

She next gave him a calender of the rec clinics held throughout the year here at Shepherd. Then came a brochure on the ADA, mainly contact information. Gary said that reminded him, he wanted to know how to find out about accessibility in Europe and Asia. I’m not sure if she exactly answered his question, but she said she would sign him up for the airport mobility class and the travel class – maybe they cover the pertinent information in this latter class. (He also then asked about the driving class, but she said she didn’t handle that and he needed to talk to his case manager.)

Another brochure was on Accessibility in the Community, and seemed to mostly be a list of what to complain about if a place wasn’t accessible. There was also a brochure on the National Spinal Cord Injury Association, and one geared toward me, on the National Family Caregivers Association, which I don’t believe is specific for SCIs. This reminded Gary that Tony had told him that in our town there is a support group for those with SCIs and brain injuries, which Gary thinks he will check out.

Other brochures were on how to protect the skin during different activities (swimming, barbecuing, etc.); how to deal with hot/cold issues, which had been covered in a class we’d attended; useful information for water activities; what to ask about accessibility when calling ahead before going to a hotel or out to a restaurant; what to know about one’s chair in order to ask the proper questions about whether a place is going to be accessible or not (height, width, etc.); problem solving techniques; common problems encountered in the community; how to be assertive in dealing with accessibility issues and how to be an advocate of the ADA; a community resource list for recreation information (including the phone numbers of the rec specialists at Shepherd – just in case Gary wants to call the gardening therapist and ask her where he can get that mower ;-)); a list of magazines and catalogs concerning Therapeutic Recreation resources and equipment (ponchos, backpacks, adaptive weight training equipment and machines, all-terrain wheelchairs, adaptive equipment for various sports).

That over, we headed toward our case manager’s office, and Gary asked her about the driving class. Turned out she needed to consult with the OT about it, and, conveniently, the OT happened to walk by just then. It was decided to sign Gary up for the van evaluation class, at which time he would need to let them know that while he would first be only a passenger in the van, next December he would be returning here for the drivers evaluation, and if all went well, he would then want to be a driver of the van. I think I mentioned that during the driver evaluation they would make sure he was medically fit to be a driver. They also wait that long so that he will have time to build up his strength and to get his balance down pat (or at least far better than it is).

Next came a family training session with the OT. She had two issues to go over with us: the stretching routine and Gary’s padding and positioning while in bed. The padding and positioning, as you probably know by now, involve keeping his bony parts off the surface of the bed so he doesn’t develop bed sores. I’ve been having lots of practice when putting him back to bed of getting him into the side positions and placing the pillows where they belong, so I knew that routine pretty well (but would always take advantage of having the information gone over with me again). I’d helped get him padded off in a prone position for his exercises on the mat, but hadn’t really done it enough to have the procedure down by heart. So we went over that. She had pictures of all of this for me to take home with me, which I am thankful for.

She also had pictures of the stretching routine she wants him to do at home, which adds in a few to the ones we’ve been doing every night (and she commented that she could tell we’d been working on his flexibility because it had definitely improved, though for some reason his legs still simply do not want to adduct – tight IT band; the therapist joked that we should tie his legs together at night – or maybe it wasn’t a joke!).

We finished up the session with a transfer back into his chair – Gary did one of his best! – and the OT said we had successfully finished our family training with her. Next was a lunch break, and then a long family training session with the PT. New power-assist wheels of the first kind Gary had tried (“E-Motion” wheels) had arrived, and so we started with Gary and I transferring him from the chair he’s been using into the chair with those wheels. First he did some traveling around the hallways to get a feel of the wheels, but despite his doctor’s recommendation, he doesn’t like them as well as the other kind (“Extender” wheels). While the Extenders have only one gear (which seems halfway between the two gears the E-Motion offers), the chair having these wheels was easy for Gary to operate, unlike the chairs having the E-Motions. The problem with the E-Motion wheels is that when he puts them in second gear, they respond too easily and he ends up spending most of his energy trying to correct his “steering.” Another problem, a significant one for him, is that he can’t hear the beeps that the wheels make when he pushes the gear buttons on them, so he doesn’t know ahead of time if the wheels are turned on or what gear they’re in (and since the wheels operate independently, whether both wheels are in the same gear). And although the doctor had said that the E-Motion wheels become significantly lighter when the battery packs are removed, this was not the case – they dropped a few pounds but were still at least twenty pounds apiece. Because the chair did not become significantly lighter, Gary would want to change the wheels out to turn the chair into a manual one, just has he would have to do with the Extender wheels. So either the doctor has his facts wrong about those wheels, or we are misunderstanding him. Gary says he’ll talk to his doctor again about it on Monday, but as of now is still leaning toward the Extender wheels.

We next went to the parking garage, the purpose being for me to practice the car transfers with Gary. Not only were they really hard on my back, but we weren’t anywhere close to being successful at them. So this is still a task for us. I just hope Gary gets stronger and a lot better at this by the time we leave (I think he will), because otherwise I think we’re going to need help with this until we get a van – my back is not going to be able to take it.

The PT next went over the maintenance of Gary’s chair with us – he will be getting one similar to the one he’s been using at the hospital, so it was less confusing to hear her go over its specific maintenance than to listen to that person yesterday give a general lecture covering different kinds of chairs. The PT also covered maintenance of his seat cushion and how to test if it was properly inflated (important to prevent skin sores). She showed me how to inflate it, and I did that, then Gary sat on it and I did the test (get my hand between his sitting bones and the seat cushion and wiggle my fingers to make sure I could get a half inch to an inch of wiggle). It seemed on the low side of acceptable, and she agreed with me but said we could reinflate it tomorrow instead of taking the time to do so now.

She then gave us sheets of paper with information about the various pieces of equipment Gary will be getting – wheelchair, special bed mattress, hospital bed (these latter two for six months), shower bench. Fortunately, we have one person who coordinates all Gary’s equipment and he will be the person we contact should we have any problems

Next the PT illustrated a two-man lift of Gary from where he lay on the exercise mat. Fortunately she didn’t make me be one of the person’s lifting him. But she wanted to show it to me in case I ever needed to direct anyone else how to do it. She and another PT did the lift, she reaching her arms around Gary’s chest from behind and locking her arms, the other person reaching under Gary’s legs above the knees and locking her arms as well, and then the two of them lifting him from the exercise mat onto his chair.

Next I had to do curbs with her. First she let me watch how Gary was practicing doing them on his own (flip the tip bars out of the way, approach the curb at good speed, pull hard on the wheel to do a wheelie to get the small front wheels up over the curb, then without a break get those front wheels down, lean forward and use good strength to get the back wheels up the curb). He can do two inch curbs with no problem but hasn’t consistently done the four-inchers (and even on the more successful attempts at the four-inchers, he didn’t do those without the PT’s help).

So now I had to do four-inch curbs with Gary. I have described the procedure to you earlier, on the blog entry about our excursion to Fresh Market. But at that time I’d had to do it on a smaller curb, maybe a two-inch one. I looked at the four-inch one warily. Sure enough, even though the PT said I did it correctly and Gary had helped by pulling on his wheels, my body did not appreciate that at all and my right leg let me know it. The chiropractor is definitely going to find I’ve gone backwards when I see him on Monday.

We were then supposed to have family training with the nurse, but the only thing I have left with her was Gary’s bowel program, and we have that scheduled for next Thursday. So I left for a two-hour break after hoyering Gary back into bed – he had to be up again in the evening, so needed to go back to bed now. The reason he would be up was to finish our family training with a group outing to Dick’s sporting good store (oh, yippee, said I; or as Gary’s roommate’s wife said, “Screw Dick’s – we want to go to the Target next door.” Actually, Gary and I would have much preferred the Borders bookstore across the street).

We were late for the departure time of 5:45. Gary is on a 6-hour IC schedule, and according to this schedule he was supposed to do it at 6pm. It is okay to vary that by half an hour (so, it could be done any time between 5:30 and 6:30) but by no more. Now, you and I can take a pee in moments. But each IC can take a half hour or more, and probably at least fifteen minutes, as one makes the needed preparations and then sits there waiting for the urine to drain out of the bladder, through the re-usable (not permanently inserted) catheter, and into the re-usable bag. Nature couldn’t be rushed, and Gary wasn’t ready to leave until 6. We got down to the bus and discovered that at least we weren’t the last ones to make it.

When the last person had arrived, next came the loading into the bus. Each of the five wheelchairs with their occupants was placed on the lift and brought into the bus. Next came the strapping down of each wheelchair into place and the seatbelting of each occupant – this took several minutes per person.

Then we were off. We arrived at Dick’s in the overairconditioned bus in about fifteen minutes and were let out at the curb. We then had to negotiate the long up-sloping sidewalk to the parking garage. The other guys (the wheelchair occupants were all men), all younger than Gary by probably fifteen to forty years, were evidently stronger than Gary (well, except for the one in the power chair, but he had a motor to help) because they left us in the dust. But Gary made it up the slope on his own, the rec therapist coming back to check on our progress. We went through the parking garage, joined the others at the elevators, and took the elevator up to the second floor to the entrance of Dick’s. The rec guy told us we could go through the store on our own, and he would go around and check on us throughout our stay. He said that when we were done looking around, we could go to the entrance, and when everyone was ready we would leave. He said we could stay until eight-thirty but if everyone was ready by eight we could leave then.

It was now 6:40. Gary and I told the guy we’d be through by 7. He was not amused (well, actually, he was).

So everyone wandered off. Gary had the idea of seeing if he could find “cool shoes” with velcro. We didn’t find any, but I did manage to tip over a display of shoes by trying to reach the ones at the top – sheesh, the things weren’t accessible to me, let alone to a guy in a wheelchair. The rec leader found us amongst the shoes and suggested Gary might like these “popular shoes,” “Crocks,” that look something like gardening shoes I have seen – rubberized, slip on easily, these particular ones with holes throughout them. As they came in only the most garish colors, I couldn’t imagine Gary liking them. Gary just said dryly, “I can’t see myself teaching in those.” The only other possibility I spotted for him for shoes were sandals, but Gary doesn’t like sandals.

The rec guy left us to ourselves after telling us we’d all meet at eight, and shortly after that Gary started to feel a little off. He decided it was because his binder wasn’t tight enough. So we tightened it around his middle, right there in the middle of the store because there were no onlookers. Fortunately that did the trick.

After that, Gary did some of the tasks he was supposed to do while there – check out the bathroom to see how accessible it was, and just see how accessible the place was in general. The bathroom he thought was nice and roomy, but the door was on the heavy side. He did like the fact that he could roll under the lowest drinking fountain and get himself a drink.

We decided to wander around some more, so we went up to the third floor. I spotted some backpacks, and Gary checked them out for something to hang on the back of his wheelchair that he can get into easily – the Shepherd bag he was given is completely open and it seems to me that in “real life” things could fall out of it. There was one backpack that interested him – not too many pockets, which would make it hard to keep straight where he’d put what, since he’d be just reaching backwards into the hanging pack and finding things by feel, not sight. But I told him to first check out the pack I had gotten in Birmingham, which was similar and about twenty-five dollars cheaper.

We next went to another floor, and Gary looked at golf stuff. We wandered around a bit more, and I saw some long-sleeved pullover shirts, comfy-looking and a step up from T-shirts, but not fancy. I showed them to him, but then said maybe he didn’t want one because he’d told me he didn’t need any more long-sleeved shirts in the hospital. He liked them, though, and said maybe he would get one because he needed one for the cold bus. I gave him the eye, because I had suggested he bring a long-sleeved shirt with him in case Dick’s was an air-conditioned building, particularly given that since the accident he can suddenly become cool. He had pooh-poohed the idea.

Sometimes (rarely) he can be such a man ;-)

I put the shirts back on the rack so he could see if he could get them off himself. He could. His next task was to negotiate the dressing room. Getting in was fine – there was plenty of room for the two of us – but getting the door closed was a challenge. Given how he was forced to position the chair, the door handle was too far for comfortable reach. Since the door was light, he ended up pushing it near the hinge to swing the door closed. When he had it halfway closed, a helpful salesperson came and opened the door for him, thinking he was trying to get out (and probably wondering what my problem was). We explained that he was practicing. Thanks to the guy’s help, Gary had to start all over again with closing the door (which was all right with him – gave him practice).

Gary then looked at his watch. Twenty to eight, and we were all supposed to meet at eight. “Well, it’ll take twenty minutes for me to get the shirt on and off,” he said with humor. “Yeah,” I said, “and that’s after taking ten minutes to get into the dressing room.” We started to laugh, and he said, “It’s a new life we’ve got.”

I hope we always keep our humor about it.

He got the shirt on about halfway (at least he found putting it on easier in the chair than doing it balanced on the edge of the exercise mat), then he looked in the mirror and declared he liked it and would get it. I asked him if he wanted me to straighten it on him so he could really get a good look at it. He said yeah. We both knew he was supposed to do as much as possible for himself, but we allowed this one cheat. The shirt did look really nice on him – a soft, gray shirt.

Then he said he supposed he had to take it off to buy it, and proceeded to take it off. He can definitely do this sort of thing a bit better than the first time he tried, though there is still wobbling going on.

We went to the checkout counter. I gave him my credit card so he could pay. He could swipe the card through the reader but at first we thought he wouldn’t be able to read the display. BUT, it turned out that the card reader could be tilted downward and he could read it fine. After he made his purchase, we went downstairs to where we were all supposed to meet. The others, minus one, were outside. Gary put his new shirt on again (over his T-shirt) and then we went outside and joined the others. Turned out we had to wait out there a half hour for the remaining guy – I don’t know what he was doing, as he didn’t come out with any packages.

While waiting for this guy, the rec therapist had me do a curb with Gary. This was one of the things he was supposed to check me off on, the other thing being he was supposed to determine whether I was a responsible enough person to take Gary on an outing (though since I’d already been cleared for a push pass, this seemed a little redundant). When I saw the curb he wanted me to do, I nearly cried. It was a six-inch-high curb, and my leg and back were already paying for all the transferring and curb work I’d done with the other therapists today. Had I not been in fear that if I didn’t do this we wouldn’t pass our family training, I would have told him I couldn’t do this curb. So I did it, first up the curb, which I could tell my leg didn’t like, then down the curb. Because of the greater height of the curb and because it actually angled downward to the side, Gary’s chair started tipping to the side. I corrected it reflexively, so he didn’t tip over, but my leg felt like someone had suddenly twisted it around 360 degrees. Something must have shown in my face because the rec guy asked if I was all right. Still fearing that if I admitted I wasn’t ,we would fail, I said I was fine, inwardly hating his guts. He said most curbs weren’t this high, and asked me what I’d do if Gary and I were out and there was a curb like this or even higher that Gary wasn’t able to handle on his own. I said I’d find a big strong person to get Gary up it, telling the person what the procedure was. With this, we passed. I stayed inwardly mad that he had made me do that curb. I was really afraid that by the time I got back to the hotel for the night I was going to be in agony. Miraculously I wasn’t. Maybe I killed off all the nerve cells.

We next returned to the bus. Again, Gary and I were stragglers, because Gary had trouble with a ramp that posed no difficulty to the others. The rec guy came back for us and asked if I’d helped Gary up it. I said no. This met with approval, the guy saying tough love was the best.

When we got back to Gary’s room, I asked him if he wanted to have a nurse help him do a transfer into bed, or if I should hoyer him (we’re not cleared to do the transfers in the harder, uphill direction of chair to bed). He said he didn’t trust any of the nurses to transfer him. He had told me when I’d gotten there at about five-twenty that evening that the nurse who had helped him transfer out of the bed in preparation for the outing had been the same one who had said our own transfer was “scratchy,” and that hers was far worse – in fact, he’d ended up landing on the tire with his butt, which had never happened before and was the main thing the PT and OT had been guarding against because of his flap (I had checked him out before we’d left on the outing but didn’t see any damage – assuming he was right that he’d hit the tire on his sitting bones, the flap had not been in danger).

So I got him hoyered into bed, undressed and positioned, and then left – planning to sleep in to help recover from the past week!