May 10, 2006
Mail call: Thanks to the Schlagels and to the Toronto Set Theory Seminar.
I know I am way behind in responding to emails. Let me assure everyone that the next visit after getting your email, I tell Gary you wrote. He always says “Be sure to thank them for the nice email and for the nice offers they make.”
Oh, about the bathing. I thought that might need further explanation. Gary hates it because it’s tiring. They do it at weird hours – like 4 am – and it’s a rigamarole. They have to remove the boots he wears to prevent foot drop and his electronically pressured socks, which help return the blood from his legs to his trunk. Then at some point comes the rolling over, requiring two nurses, and the changing of the dressing on his bedsore, and at the finish the socks and boots have to be put on again.
Last evening I went to a class offered by the chiropractor here. I wasn’t sure it’d be worth it. When I had asked her at my appointment what it would cover when she brought it up, she was rather vague but mentioned that she would talk about posture and other things that would help or hinder the adjustments I was getting. It turned out not to be too useful. The only thing I learned was that in standing so much I should shift my weight completely off one leg and onto the other every short while (like every ten seconds). This was not worth sitting in rush hour traffic, particularly given that sitting aggravates my symptoms more than anything (it took forty-five minutes to go the fifteen minute distance), nor having to drive back in pouring rain – at one point a car went by and threw up a sheet of water so thick I couldn’t make out anything, which scared me half to death as I couldn’t see the car ahead of me. The class was very basic, talking about how we need to deal with the various stresses in our lives – physical, emotional, chemical – by getting exercise and keeping our posture correct, by not overindulging in alcohol or smoking and by eating properly, and by keeping a positive attitude. Hardly news to me. And when someone starts enthusiastically lecturing about how we can keep improving our health just by making these changes, I feel like standing up and saying, “honey, I know firsthand a person can be very conscientious about all those things for many years and then get hit with something that takes a lot of those things out of their control.” But I didn’t because that probably wouldn’t have been in keeping with the spirit of the evening. ;-)
So I’m afraid her words of inspiration fell flat with me. I did take note there was a beautiful sky when I got out of my car – pinks and purples on the horizon – so I suppose I should find some symbology in that ;-) . Back in the hospital Gary told me the BC/BS social worker had come and said it looked like there would be a time when he wouldn’t need be in the hospital but also wouldn’t be ready for therapy, so he’d have to go home and then come back again. This certainly wasn’t good news to me. She said she’d come by in the morning to talk to us again. We finished the night by watching more of “Walking the Line” until the salt in Gary’s tears got to bothering his eyes too much ;-)
In the morning I was surprised to come into his room and see him sitting up in a chair while the physical therapist exercised his legs. He was still somewhat inclined – maybe about 75 degrees. He looked really grim and didn’t really respond when the therapist directed conversation to him – not even with one of his smiles to either her or me, so I knew he wasn’t feeling that great. When the therapist left for a moment to bring in a hoist like we would probably have to use at home at first, he spelled out that he felt weird but knew it was to be expected after lying flat for a week. The therapist showed us the hoist, saying to me, well, first you’ll help him roll over, and after he is lifted up by the hoist, you’ll swing the hoist around to his chair, and I’m thinking, I’m not sure about helping him roll and I wouldn’t dare swing that hoist even without him in it. So I guess we’ll be hiring some help, at least at first. The goal is for him to get strong enough that he can eventually scootch himself over in the bed to a board so that he will get to the chair himself. But for now his exercise is to sit in that chair for thirty minutes twice a day. Also, when he is in the bed now, he is supposed to practice rolling himself over as best he can, though he is hampered by the hand in the cast. We may need to get a nurse to help with this, as I am supposed to lift and bend his knee up for him to get him in position, and I’m not sure I can even do that. The wound care person came and changed his dressing. She measured the wound and said it is about half the size of last week. The breathing person came in and gave him his treatment. The social worker came and said that one of the doctors thought Gary might be able to put weight on his right hand in two weeks, so that he could just be moved to Spain (the rehab center, not the country) without having to go home first. The social worker said she needed to talk more to the doctor about this, as otherwise we would have to explore our other options. She is supposed to return this afternoon with the news. I sure hope it works out that he can stay.
Everyone that came in commented that Gary needed a shave, his morning nurse being the final entrant, saying that she was going to shave him this morning. To them all, Gary kept shaking his head and pointing at me. The nurse told him that’s what he’d been saying for days. I protested that I had been wanting to shave him, telling him he looked like a bum and that everyone was going to think I was neglectful, but that he wouldn’t let me, saying the scruffy look was in.
When they’d all left I wielded the shaver at him and asked if I could shave him now. He spelled out, “Oh, all right” and made a face. Afterwards, he was feeling tired out from all the activity and so wanted to rest. It took me ten minutes to track down someone to suction him, as his nurse had disappeared, and then I left.
When I returned Gary had been put on a six (the units are “dci,” so I don’t know what that is). He said it was work, as it was harder to breathe and for some reason it made him cough more. I could see it really was demanding of him; he wasn’t up to watching any more of the DVD as we had planned, or even to being read to, as he said he wouldn’t be able to enjoy it. So I just stood there and stroked him. The social worker came in and told us she had no definite news, but that one of two things would happen. Either she would get word that the docs thought it likely Gary would soon be able to bear weight on his right hand, in which case tomorrow he would be moved to Spain Rehab Center. If they don’t think he is ready, then we will have to look into some live-in nursing facility – she didn’t recommend I try to take over his care at this point, and she got no argument from me – no way could I do it at this stage. But I then told her we had heard about the Shepherd center in Atlanta and were considering going there. She has given me the deadline of tomorrow morning to let her know of our decision of where to go for rehab, Spain or Shepherd. Gee, it’s nice they gave us such advance warning. I would be in a tizzy if not for the fact that we had some information about Shepherd already – thanks to Debra Talley for first putting the bug in my ear about the place, to my sister Janet for running off related info from the web, and Krystina Kuperberg for sending an email about some recent mentions of Shepherd. I’m pretty sure we’ll say we’re interested in Shepherd, and then the social worker will get that ball rolling. My understanding is that Shepherd will send someone out here to evaluate Gary to see if he is suitable for their program, and when. So it’s still not clear if we’ll need to find temporary nursing, or will be going directly into a rehab program. I’m afraid the thought that we will soon be moving to a new phase has worn me out today. And Gary is worn out from the breathing adjustment. Soon after the social worker left, he said he wanted to rest, so I left him and looked up some stuff about Shepherd on the web. I notice I’ll get to see him much less when he starts rehab, as the visiting hours are just 4pm to 9pm. I’ll also have to get used to staying at a new place, and the places Shepherd lists looks like they’re at least 2 miles away. They have some condos available, but looks like a waiting list thing as it was here with the UAB Towers. So I must say Birmingham has spoiled me by having the convenient accommodations.
Poor Gary. He’s so miserable today. When I went back at five, there hadn’t been much improvement in his ability to breathe. He said the new tube tickles and makes him want to cough all the time. He doesn’t feel like doing anything. I talked a short time about Shepherd and stroked him, but then he said maybe he should rest, so that was my cue to leave. I hate seeing him like this.
Mail call: Thanks to the Schlagels and to the Toronto Set Theory Seminar.
I know I am way behind in responding to emails. Let me assure everyone that the next visit after getting your email, I tell Gary you wrote. He always says “Be sure to thank them for the nice email and for the nice offers they make.”
Oh, about the bathing. I thought that might need further explanation. Gary hates it because it’s tiring. They do it at weird hours – like 4 am – and it’s a rigamarole. They have to remove the boots he wears to prevent foot drop and his electronically pressured socks, which help return the blood from his legs to his trunk. Then at some point comes the rolling over, requiring two nurses, and the changing of the dressing on his bedsore, and at the finish the socks and boots have to be put on again.
Last evening I went to a class offered by the chiropractor here. I wasn’t sure it’d be worth it. When I had asked her at my appointment what it would cover when she brought it up, she was rather vague but mentioned that she would talk about posture and other things that would help or hinder the adjustments I was getting. It turned out not to be too useful. The only thing I learned was that in standing so much I should shift my weight completely off one leg and onto the other every short while (like every ten seconds). This was not worth sitting in rush hour traffic, particularly given that sitting aggravates my symptoms more than anything (it took forty-five minutes to go the fifteen minute distance), nor having to drive back in pouring rain – at one point a car went by and threw up a sheet of water so thick I couldn’t make out anything, which scared me half to death as I couldn’t see the car ahead of me. The class was very basic, talking about how we need to deal with the various stresses in our lives – physical, emotional, chemical – by getting exercise and keeping our posture correct, by not overindulging in alcohol or smoking and by eating properly, and by keeping a positive attitude. Hardly news to me. And when someone starts enthusiastically lecturing about how we can keep improving our health just by making these changes, I feel like standing up and saying, “honey, I know firsthand a person can be very conscientious about all those things for many years and then get hit with something that takes a lot of those things out of their control.” But I didn’t because that probably wouldn’t have been in keeping with the spirit of the evening. ;-)
So I’m afraid her words of inspiration fell flat with me. I did take note there was a beautiful sky when I got out of my car – pinks and purples on the horizon – so I suppose I should find some symbology in that ;-) . Back in the hospital Gary told me the BC/BS social worker had come and said it looked like there would be a time when he wouldn’t need be in the hospital but also wouldn’t be ready for therapy, so he’d have to go home and then come back again. This certainly wasn’t good news to me. She said she’d come by in the morning to talk to us again. We finished the night by watching more of “Walking the Line” until the salt in Gary’s tears got to bothering his eyes too much ;-)
In the morning I was surprised to come into his room and see him sitting up in a chair while the physical therapist exercised his legs. He was still somewhat inclined – maybe about 75 degrees. He looked really grim and didn’t really respond when the therapist directed conversation to him – not even with one of his smiles to either her or me, so I knew he wasn’t feeling that great. When the therapist left for a moment to bring in a hoist like we would probably have to use at home at first, he spelled out that he felt weird but knew it was to be expected after lying flat for a week. The therapist showed us the hoist, saying to me, well, first you’ll help him roll over, and after he is lifted up by the hoist, you’ll swing the hoist around to his chair, and I’m thinking, I’m not sure about helping him roll and I wouldn’t dare swing that hoist even without him in it. So I guess we’ll be hiring some help, at least at first. The goal is for him to get strong enough that he can eventually scootch himself over in the bed to a board so that he will get to the chair himself. But for now his exercise is to sit in that chair for thirty minutes twice a day. Also, when he is in the bed now, he is supposed to practice rolling himself over as best he can, though he is hampered by the hand in the cast. We may need to get a nurse to help with this, as I am supposed to lift and bend his knee up for him to get him in position, and I’m not sure I can even do that. The wound care person came and changed his dressing. She measured the wound and said it is about half the size of last week. The breathing person came in and gave him his treatment. The social worker came and said that one of the doctors thought Gary might be able to put weight on his right hand in two weeks, so that he could just be moved to Spain (the rehab center, not the country) without having to go home first. The social worker said she needed to talk more to the doctor about this, as otherwise we would have to explore our other options. She is supposed to return this afternoon with the news. I sure hope it works out that he can stay.
Everyone that came in commented that Gary needed a shave, his morning nurse being the final entrant, saying that she was going to shave him this morning. To them all, Gary kept shaking his head and pointing at me. The nurse told him that’s what he’d been saying for days. I protested that I had been wanting to shave him, telling him he looked like a bum and that everyone was going to think I was neglectful, but that he wouldn’t let me, saying the scruffy look was in.
When they’d all left I wielded the shaver at him and asked if I could shave him now. He spelled out, “Oh, all right” and made a face. Afterwards, he was feeling tired out from all the activity and so wanted to rest. It took me ten minutes to track down someone to suction him, as his nurse had disappeared, and then I left.
When I returned Gary had been put on a six (the units are “dci,” so I don’t know what that is). He said it was work, as it was harder to breathe and for some reason it made him cough more. I could see it really was demanding of him; he wasn’t up to watching any more of the DVD as we had planned, or even to being read to, as he said he wouldn’t be able to enjoy it. So I just stood there and stroked him. The social worker came in and told us she had no definite news, but that one of two things would happen. Either she would get word that the docs thought it likely Gary would soon be able to bear weight on his right hand, in which case tomorrow he would be moved to Spain Rehab Center. If they don’t think he is ready, then we will have to look into some live-in nursing facility – she didn’t recommend I try to take over his care at this point, and she got no argument from me – no way could I do it at this stage. But I then told her we had heard about the Shepherd center in Atlanta and were considering going there. She has given me the deadline of tomorrow morning to let her know of our decision of where to go for rehab, Spain or Shepherd. Gee, it’s nice they gave us such advance warning. I would be in a tizzy if not for the fact that we had some information about Shepherd already – thanks to Debra Talley for first putting the bug in my ear about the place, to my sister Janet for running off related info from the web, and Krystina Kuperberg for sending an email about some recent mentions of Shepherd. I’m pretty sure we’ll say we’re interested in Shepherd, and then the social worker will get that ball rolling. My understanding is that Shepherd will send someone out here to evaluate Gary to see if he is suitable for their program, and when. So it’s still not clear if we’ll need to find temporary nursing, or will be going directly into a rehab program. I’m afraid the thought that we will soon be moving to a new phase has worn me out today. And Gary is worn out from the breathing adjustment. Soon after the social worker left, he said he wanted to rest, so I left him and looked up some stuff about Shepherd on the web. I notice I’ll get to see him much less when he starts rehab, as the visiting hours are just 4pm to 9pm. I’ll also have to get used to staying at a new place, and the places Shepherd lists looks like they’re at least 2 miles away. They have some condos available, but looks like a waiting list thing as it was here with the UAB Towers. So I must say Birmingham has spoiled me by having the convenient accommodations.
Poor Gary. He’s so miserable today. When I went back at five, there hadn’t been much improvement in his ability to breathe. He said the new tube tickles and makes him want to cough all the time. He doesn’t feel like doing anything. I talked a short time about Shepherd and stroked him, but then he said maybe he should rest, so that was my cue to leave. I hate seeing him like this.
posted by Peg Daniels at 5:51 PM
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