Day Program preparation and start:

Gary got a nice card from his therapist yesterday (Friday the 8th ) – it was the last day he goes to her (because insurance will no longer pay). In the card she told him she is proud of how far he’s come since his start of seeing her and hopes he’ll let her continue to know how he is doing. She also wrote that he should call her if he ever needed anything. Gary told me she asked him if he thought he could get along on his own if I had to go into the hospital for a week. Gary said he gave a hesitant “maybe,” as a reply, saying he’d be scared. I told him he should tell her I don’t want to go into the hospital for a week, so we don’t have to worry about that ;-)

Today, Saturday the 9th, I suggested we raised the shower bench a few notches higher, so we tried that, and it turned out the transfer was easier that way :-) (and he didn’t hit his head on the wall, either ;-)). I still have to give him the “maximum help” on that one by giving a little lift under his the sitting bones.

I also suggested to him that with his other “most difficult transfer,” the one from futon to wheelchair, that he start in a position farther back than he’s been. That also turned out to make that transfer easier. So although Gary is so much more independent of me these days, I still make a contribution now and then ;-). Speaking of which, I had a dream the other night that related to that. In the dream he was the honored guest at an awards ceremony. He started to roll his wheelchair to where he was supposed to go, and I noticed his tip bars were off and I yelled out to him. (For some reason, this ceremony was taking place next to a pool. I was in a racing suit, sitting with kids teen-aged and younger, with whom I was going to start training again (before I got CFS, I worked out with the local kids team for about ten years). The kids were talking about saints, for some reason, only they called them some name in some language I never heard of before – I think that may have been a stray thought from the novel I’m working on. Also in the dream, there was a choir of kids, who I think were going to sing for the awards ceremony. Anyway, back to Gary ;-)) I was on the other side of the pool so couldn’t get to him, but he didn’t need my help. He got right out of his wheelchair, like he’s going to learn to do in day program, and started doing these amazing things that in reality he will not be learning to do – like being on his hands and knees – in order to fix his chair himself. Some people were going to try to help him, but someone yelled out, “Don’t help him, don’t help him.” Now, I bet you’re thinking I was the one yelling that ;-), but it wasn’t – but it was the wife of one of the local university’s math professors, with first name Yvonne, for those who can guess who I’m talking about. At this point in the dream I found a screw that went to the tip bars, and that was the only contribution I could make, to return this tiny part to him (I guess he had a screw loose, heh, heh).

When Gary first started doing more and more for himself, needing me for less and less – going off to therapy and to the university on his own, etc. – I admit I felt a bit of a pang: he didn’t need me anymore. I don’t mean this to sound degrading to him, but I felt like a mother whose child was going off to school and she wasn’t needed anymore in quite the same way. I got over these pangs pretty quickly, however ;-). I am happy to have him do more and more for himself so I can go back and do more and more of my own thing.

These days my main “jobs” concerning him consist of the following.

I take pillows off his bed after he’s finished with his IC and bowel program in the morning; this is so he can maneuver easier in the bed (I suppose he could just throw them off the bed and take care of them later, but I have to be in there anyway for other things so they’d get in my way). I grease his flap in the morning and evening (I used to put prescription xenaderm on it, but the flap doc said I could just use vaseline now; the reason for putting the thick lubricant on the flap is that it would be dangerous for the skin on and around the scar to dry out – it might cause the flap to open if that tender skin got too irritated) – while I am doing his flap he is doing “the terrible threes” with three-pound dumbbells I bring over to the bed. Then I put on the bed his trousers, his t.e.d. hose, regular socks, his short tube for the condom catheter, the straps for the catheter leg bag, his binder, his mirror so he can do his own skin checks now (except for his back and butt, which I check), and some skin cream – again, in general, he needs to guard against dry skin because his skin doesn’t get the circulation it once did and so it can break down easier; keeping it lubricated helps prevent problems.

After he gets himself dressed and so forth, I come back into the room and take the bed rail down so he can get his legs over the side of the bed for the transfer. I put his shoes on for him, though since his flap restrictions have been removed he can bend forward and do that for himself now – I just always forget to put the shoes on the bed so he can! Then I leave the room and keep an ear out while he transfers (he still calls out “One, two, three!” so I know when he is doing the transfer).

In the evening I stand pretty close while he does the futon to wheelchair transfer after he’s done stretching on the futon – that one he is still iffy on and I’ve had to render assistance. Or maybe I didn’t HAVE to, but I felt it too chancy to see if he would fall out of the chair, and he agreed with me. Except for the one time when Janet and John were there – I was probably a little too overprotective that one time, but for some reason I would have felt worse if I was standing right there with witnesses to see I’d let Gary fall on his face.

At bedtime if he is really tired I will help him get his legs onto the bed. After he gets himself undressed, I bring in hot wash cloths so he can give himself a bed bath (except I wash his back for him, and later I wash his butt right before greasing the flap). He could prepare the wash cloths himself and bring them to the bed in a basin, but they’d be cold by the time he got himself undressed! While he is washing I bring over to the bed his long tube for the condom catheter and his ankle pillows. After he’s done washing I do his back. He then puts on his bed socks and ankle pillows while I bring over the various pillows he needs for padding himself for lying on his side. Then I leave until after he does his IC. When he is finished with that, I empty and wash out his urine bag and catheter. Then I bring over pillows and help him prone – he can’t pad himself below and above the knees or put the pillows under his chest and one under his head because he doesn’t have enough room to maneuver in the small bed.

So that’s all I have to help him with in his daily maintenance routine these days. He does the stretching himself on the futon, and he washes most of himself and dresses himself. And since he’s upped his fiber, I haven’t had to help out with his bowel program. So whereas at the beginning I was probably spending most of the time from 8-10 am and 8-10 pm helping him, now in those same hours I only spend about thirty minutes helping him – the most drastic reduction in time occurred recently after he got his flap restrictions lifted and was allowed to do more than he could before.

I know he finds it a bit frustrating that he has so little “productive time,” and, in particular, has to spend two-and-a-half to three hours going to the bathroom. Each of his five ICs takes about twenty-five minutes, most of that time used in preparation and clean-up. It’s possible he may be able to go down to just four ICs per day, but that is the minimum. Then his bowel program takes thirty to fifty minutes. When he learns how to use the commode chair for this, it’s possible that may take less time, but we’re not sure how much less.

I still help out with his laundry a bit – it would take him forever to empty the washer stuff into the dryer. A big thing I help him with are transfers into the car – he can’t do those on his own, but these days since he takes the bus to school (also did so to rehab) I haven’t had to do that nearly as much as at first.

He is very bad at packing the car ;-), which was again noticeable in packing to go to Shepherd, but of course there are just some things he is never going to be able to do, at least not without a totally unreasonable amount of effort on his part.

So, on the ninth we spent much of the day figuring out what we should bring to Shepherd, and I packed into the car as much as could go in ahead of time. Gary pointed out that while we’re on the day program at Shepherd we’ll have to start the morning routine an hour earlier to make it to Shepherd by 9. Only, since on account of the time difference we lose an hour going to Atlanta, that means we’ll have to be getting up two hours earlier. Ychh! I told him we should tell them we want to do the Half-Day Program, starting in the afternoon, and he agreed. We were kidding around, however, because unfortunately, there is no Half-Day Program.

On Sunday morning I finished packing up the car, and we left for Atlanta at about 11:30. I did a little unpacking once we got there – we are in exactly the same apartment we were in last time – and then we went to Fresh Market to do some grocery shopping. Coincidentally, as we were leaving we ran into the chiropractor I’d been going to here!

Gary decided to test his progress by trying to see if he could wheel up the driveway of the market. You might remember, he couldn’t do it the last time he tried. Well, he made it, and with no rests! Of course, we knew he was stronger, but it was nice to see this proof.

On the drive up, we had gone over his day, noting the places where I was still helping him, among other things. From this he drew up a list of goals for day program, since we knew they’d be asking him for such a list.

So, here are his goals that he wants to work on while he’s here:

Commode chair – how to transfer onto it and how to use it for the bowel program

Work on Transfers from wheelchair to the following and from the following back to the wheelchair:

commode chair
floor
our car (by himself and possibly without use of transfer board)
an SUV like Michel’s, which has a seat so much higher than our chair
shower bench
low to high transfers in general

Dressing while in the wheelchair, trousers especially (so he doesn’t have to get back into bed to dress himself)

Decreasing the number of ICs to four (though that may be a problem because at this point it would mean he would have to get himself out of the prone position at midnight and lay on his side to do the IC, and he would then have to wake up an extra time during the night because he’s not allowed to stay on his side for more than six hours and he isn’t comfortable staying on his side for even that long – and he doesn’t want to wake up an extra time!)

Curbs and wheelies

“Regular bed techniques” – in other words, now he does everything in a hospital bed, which has those nice electronic controls and rails to aid him. Since he eventually wants to travel, he wants to be able to do his maintenance tasks in a regular bed, so he needs to “re-learn” how to pad and position himself, and turn from side to side, and do his bowel and bladder stuff, etc., in a regular bed. Also, he wants to learn how to prone himself, because he is definitely dependent on me for that.

Find out if there’s anything else he should be doing for the “leaking problem,” see what the possible solutions to it are and what their long-range effects would be

Grease his flap himself

Do his own skin checks of his butt and back

Get another wheelchair evaluation – it’s possible the wheels on this could be brought in to make the chair narrower; also, we want to see if his tip bars could be raised and if the footplate is in the proper position (I had to fool around with it from what it was when his new chair came, because he couldn’t roll under the kitchen sink – the position of the footplate made his knees to high – only now, in the position the plate is in his heels don’t rest on the plate). A minor goal is to learn to breakdown and assemble the chair himself, but he doesn’t really see himself doing that, like to get it in a car – it’s too heavy for him. He won’t need to do that when he gets his van, cuz he’ll be able to roll the chair right in; and if he’s a passenger in someone else’s car he’ll depend on them to get the chair in and out for him.

He also hoped to persuade the recreational therapist that a good goal to have would be for he and I to go to the Atlanta symphony Christmas concert next week. The catch is that we’d want permission to not have anything scheduled until 10 am the next day, as it would be a later night for us than usual – otherwise we wouldn’t need to mention this to them as a goal!

Other rec therapy goals: they may get him in the pool; they are putting him in the standing frame; they may go over a weight training program with him that he would be able to use at our university gym.

***

So, on Monday 9am we were back at Shepherd. They had him scheduled for an hour orientation with his case manager, but that took less than half that time. So we went down to the library where I hooked up to the internet to find out how to get a replacement adaptor for my computer – mine died Sunday night, and I’m really not supposed to be running my computer on Gary’s adaptor (different wattage), though Dell said it shouldn’t hurt if I didn’t do it too long. They didn’t define “too long.” We were also supposed to have internet access at our apartment, but when Gary tried to connect us he got a message saying the Shepherd account had been cancelled, so we don’t know what is up with that. I left a message for the housing guy who was supposed to take care of that. Right now I am suffering from internet withdrawal.

Anyway, at 10 am Gary had a PT evaluation. He told the woman what he’s been up to these last four months, and she said she was impressed with how much he can already do at this point, that many people even without having the extra complication of the flap wouldn’t be as far along as he is. In the evening I asked him if that had made him feel good, and he said yeah, but that progress seemed slow to him. I said I realized that, and gave him a kiss. Then I told him to cut himself some slack – that he’d had an accident that had broken his spine, for Pete’s sake! He laughed and said I was right.

He went over some of his goals with the PT, and she did part of the ASIA test with him again – the one they always do where they test his ability to feel touch at different points in the body and to distinguish sharp and dull pricks of a safety pin. She didn’t finish, but neither I nor Gary noticed anything different this time in his responses – he has no more function or feeling than he had before.

Next came a “group planning.” We weren’t sure what that was about, but it turns out there is a Holiday party this Friday. “Our” group of four patients (plus me) was assigned “Christmas around the world.” The PT asked us what we knew of Christmas traditions around the world. I thought this was strange to be asking us – I certainly couldn’t remember anything off-hand! One guy remembered hearing that in Germany the children put out their shoes for gifts from St. Nicholas (I then thought that might be the case for Holland). Fortunately the PT had gone on the ’net and looked up some facts. Then we were asked what supplies were needed to decorate the sugar cookies our group is assigned to overseeing. Gary suggested “something chocolate,” of course. Sprinkles and icing were decided on. Finally, our group was assigned the task to lead everyone in singing “Felice Navidad,” so we sang that a couple of times. I am a grinch – I think Gary should be spending his time Friday on therapy goals, not partying ;-)

Next we had a meeting with the rec therapist. She asked the usual stuff everyone is starting out with – how has he been doing and what are his goals, in particular related to their area. For rec therapy, Gary put forth the idea of going to the symphony. She said she’d see if she could accommodate us by giving us that first hour off the next morning, possibly by assigning that hour to herself. We are not supposed to tell anyone she is doing this, so keep it a secret ;-). Gary will go online and see if there is accessible seating assignments, or if not, call and see what they have. The few times we have gone, we haven’t noticed accessible seating, but then, we weren’t looking for it. The therapist said that if they didn’t, Gary could transfer to a regular seat and then we’d have to do something with the wheelchair. I said that in that case he’d better make sure he got an aisle seat, as it might be problematic if he had to go hopping down from the aisle seat to a center seat. We all laughed at the thought of that.

Next we met with the OT. He told her how slowly he is doing more and more for himself and how at the beginning I was helping him with maintenance tasks for three to four hours a day and now it was probably more like thirty minutes. She assigned him some exercises to do “in his free time” – five sets of twenty wheelchair pushups spread out through the day, and three sets of twenty on the rickshaw, to be done consecutively with one to two minutes rest in between. She didn’t think he’d been getting enough tricep work in his therapy at home. She had him do a set on the rickshaw to see how much weight he needed. She put on seventy pounds and was going to add another twenty, and I said that when he was here last he only had twenty pounds on the machine. So she stopped at seventy. Gary then tried the exercise, and that seemed to be about the right amount of weight. Pretty good from when he left here!

Next came the hour “lunch break.” Gary did an IC and I ran off to the library to check email. Then Gary came to the library and we went up to the third-floor gym and ate our packed lunches – he would not get his fiber in if he ate at the cafeteria here, not to mention the food wouldn’t be as healthy.

Next was a nursing evaluation. The only thing new Gary had to report was that he has been having increased discomfort in that “demarcation line” in his back, the area between feel and no-feel. He has always been aware of that area, but now by late afternoon it sometimes aches and he has to take a couple Tylenol for it. It is possible this is related to his new chair – the back is lower on it. He also brought this up to the OT, saying maybe he’ll get used to it when he gets more used to the chair. But they may also try raising the back of his chair.

After the nursing evaluation we had about twenty minutes before his goal-setting meeting with his team. That was not enough time for him to get on the mat and stretch, but he thought he could do some in his chair. Just then the housing person came up to us and we asked him a couple things. About a second after he left, I told Gary he could get back to his stretching. “I see you’re back in pushing mode,” he teased. He then said he was surprised I suggested the therapist was putting too much weight on the rickshaw, that I don’t usually go in that direction. I said I had just been worried about him blowing out his shoulders the first day – that if he needed more weight, it could have been put on.

At the goal-setting meeting, Gary again re-iterated all his goals, reading from his list. They noted there was a month’s worth of work there, but he couldn’t be persuaded to stay longer. The OT then said that what he and I’d have to do is practice the new techniques and tips we learn in the apartment after each day’s sessions are over – I guess we’re supposed to do this in all that free time we have ;-). So, this could be pretty intense for us both. I have to say though, that after all this talk of how they were going to really be working him, I look at his schedule and see lots of time that could be put to better use. Just one example – on Thursday they have an hour slotted for him to “prone on his own,” and then another hour where he is supposed to “stretch on his own.” Well, he doesn’t need to prone – he prones six hours each night. And his stretching takes him a half hour. So we are going to discuss with his therapists – or on our own – figure out ways to put such times to better use – either practicing techniques, or getting him down to the gym, or whatever. As you can see, I am back to being a taskmaster. I want him to make maximum use of this time. I suppose that the reason they don’t pack his schedule is because the therapists have other people to work with, but hopefully they won’t object if we come up with things to do on our own.

One thing they brought up based on our meetings was that they’d really like to get him better at taking showers so that they don’t add an extra hour to his morning routine. They want to wean him away from his bed baths.

The case manager then summarized everything, which pretty much just reiterated the goals Gary had come up with. They had him sign a paper to the effect that he was committed to these goals (and that he wouldn’t be holding any wild parties, the case manager said, as a joke), and that was the end of the meeting.

Gary then did his rickshaw exercises, and then we went home. I went for a walk and pondered something that had come up during my critique group last Friday – maybe the last time I’ll be able to think of such stuff for the next two weeks. Then I got my dinner and went to meditate. After that, I helped Gary make his omelet. We ate and pretty much started in on our evening routine. Went to bed earlier than at home, which because of the time change was even earlier than my watch indicated ;-). Naturally my bad karma concerning apartment/motel neighbors continued. It seemed that for hours some elephant was walking the floor above my head. I’d doze off for a second, and then the clumping upstairs would wake me up. I guess I have to resign myself to another two weeks of lousy sleep. On top of it, I had a dream where Blackjack yelled at me to get up and feed him, so I lost an hour’s sleep in the morning because of him, even though he wasn’t even there!

Now it is Tuesday morning, and first on the schedule is an outing to Wal-Mart, again a waste in my opinion, but Gary didn’t want to see if they would let him do something different. Our assignment is to get some things for Friday’s party, including two $5 gifts for a “white elephant gift exchange.” We also have some things we want to pick up for ourselves. I have been writing this while in the bus, and now we are Walmart! Bye for now.

Odds and ends I never posted from previous days:

Gary has been reading the book I got about the quadriplegic Brooke Ellison. He says little mention is made of “maintenance activities.” So far it’s gotten one mention, when the mother says there was one day filled with activities on the Harvard campus that she worried about getting Brooke back to the dorm to do the I.C. Oh, and there is the mention that it takes her four hours to get ready to go anywhere in the morning. A mishap that occurred that wasn’t seen in the movie was that one day something went wrong with her five-hundred pound electric chair, and she couldn’t stop it. It was stopped when it ran into a fountain on the Harvard campus. Brooke had to stay in her room a week until the chair was fixed.

Gary noted that even though he is impressed with Brooke, he is more impressed with her mother. Me too. I sure couldn’t have done what she has done all these years. For one thing, I can’t imagine having to get up every two hours during the night year after year to turn someone in their bed. We definitely would have had to hire someone to do that!

When Janet was at our place she told an anecdote she had read in Readers Digest that she said reminded her of me. It was about a woman who had bought a new car, and she went to a shopping mall. Later when she came out of the mall, she forgot where she’d parked. And she forgot what the car looked like. She called the police, and they came to help. They asked her to describe the car. She couldn’t remember the make or model or color. All she remembered was that, because it was new, it had four white-wall tires on it. The police eventually found the car. It had a sailboat tied to the top of it.

An amusing thing happened (well, amusing in retrospect) when Janet and John and Gary and I were going out to the Mexican restaurant. I was supposed to be leading our little caravan of two. Unfortunately, a car got in between us, of the same color as the one they were in (although later I realized their car was much smaller), and when I made a turn, I thought they turned too, since this other car did. Only, this other car turned off behind me soon after that and I realized it wasn’t Janet and John. We were taking a roadway that goes around a shopping mall, so I pulled into one of the entrances into the mall parking lot, did a U-ey, and pulled into a parking place to see if I could see J and J. I did, and they turned into the same entrance. I was the only car in the vicinity, and I assumed they saw me. They didn’t. Well, John saw me, but Janet didn’t, and she was driving. John didn’t bring up to Janet that she had just gone right past me. I couldn’t believe she kept on going, and I swung around trying to follow her. Only, there were now about four cars behind her, so I had this bright idea to cut across the parking lot and get parallel to her. When she was about halfway across the mall, she turned around – evidently that was when John told her she had gone past me a long time ago. So now I had to swing around and go zooming across the parking lot, still parallel to her – I felt like I was in a car chase in one of those thriller movies. At one point, she for some reason turned down one of the parking aisles and then went parallel to how she had been going. I actually got right behind her and started honking my horn like crazy. She never heard it. Finally she noticed me, and we made it safely to the restaurant.