Today I was back being crazed again. See, you thought it was all over and I was relaxed...
Actually I'm exaggerating a bit but it was an exhausting day.
I had an appointment this morning and Redjeb's daughter Nicole stayed with him all day. I thought I'd have some time to take care of things and rest a bit when I got back, but a speech therapist called to say he was coming over. He was to come at 3 but ended up coming at 2. See you never can tell what is going to happen when. So when you folks out there ask me what is a good time of day to visit, I can never predict.
The therapist asked all kinds of questions about Redjeb's tests at the hospital and the nursing home. I tried to find info in all my many well-organized files but of course could come up with nothing. So I placed a call to Stony Brook to one of the social workers we knew (Roy) and I happened to get him on the phone. It is nice that one is remembered at least a few weeks later. He was very helpful. But here I am on the phone with him, the speech therapist is shouting out all kinds of sounds for Redjeb to make to strengthen his throat muscles, the other phone rings, it's a friend (I hang up abruptly and have to apologize and explain later), phone rings again (I am still on hold with Roy on my cell), so Redjeb takes it. Is the Aetna insurance company. All this at one time. But Redjeb is getting much better and can even handle some phone calls, such as this Aetna one, particularly if they are not too taxing. (Verizon did not pass the "not to taxing" test last eve, and Redjeb hung up on them.) There are other stressors but I will not bore you with such details.
This eve I took more "time off" since Nici is here, and went to a little family gathering: a birthday party for my nephew Tom (the one who got hit by a car in March while riding his motorcycle). I am happy to report that he is back at work, commuting from Connecticut, and walking without his cane. He had a badly smashed leg, but fingers crossed, it is healing well.
Redjeb and Nici are now outside getting some fresh air. I'm going to start making some efforts towards bed.
Friday, August 30, 2013
Thursday, August 29, 2013
Thursday: First full day back home
Redjeb slept well last eve and is really getting back into life.
Today the nurse from the home care agency came as did the PT for assessment. They both expressed shock when they arrived. They had expected a real 91-year-old accident victim, but instead they got Redjeb: sitting up in a chair, managing to walk around (slowly and with his walker but still....) And he does look great, thinner, but still quite good.
So we have been setting up visits for home care, which I'm sure after a week or so we will be tired of all these people calling and coming to do their things. He'll choose which he likes but in the end it won't go on real long.
We also have decided that he will try to see the same doctor who did the neck surgery for his follow ups. May be hard to find a NYC doctor to follow someone else's surgery. So he will have his neck brace on for at least another 6 weeks. He says it doesn't bother him but does make it difficult to take a shower or wash his hair/head.
So that is it. One of these days soon I shall stop writing these blogs. For my faithful readers, I shall let you know when it is the last one. I don't know what you will then do with all that free time you will have (from not reading my opuses).
Today the nurse from the home care agency came as did the PT for assessment. They both expressed shock when they arrived. They had expected a real 91-year-old accident victim, but instead they got Redjeb: sitting up in a chair, managing to walk around (slowly and with his walker but still....) And he does look great, thinner, but still quite good.
So we have been setting up visits for home care, which I'm sure after a week or so we will be tired of all these people calling and coming to do their things. He'll choose which he likes but in the end it won't go on real long.
We also have decided that he will try to see the same doctor who did the neck surgery for his follow ups. May be hard to find a NYC doctor to follow someone else's surgery. So he will have his neck brace on for at least another 6 weeks. He says it doesn't bother him but does make it difficult to take a shower or wash his hair/head.
So that is it. One of these days soon I shall stop writing these blogs. For my faithful readers, I shall let you know when it is the last one. I don't know what you will then do with all that free time you will have (from not reading my opuses).
Wednesday, August 28, 2013
Wednesday, August 28: D-Day
Free at Last, Free at Last....
Redjeb came home today!!! Accident was Monday, July 1 !!!
We are now in our little NYC apartment. I think Redjeb is happy to be home. He has been making himself food all day. Mostly soup, but he also had some solids, but only a little as he has to see what he can tolerate. But he is up and about, doing things in the kitchen and sitting at his computer. A bit slow and balance not too good, but getting around. Still sleeps a lot but now does so on his favorite pink chair (recliner).
Apartment is now quite cluttered as equipment arrived: a raised toilet commode that is quite good, except when installed the bathroom door won't close. Then there is the fancy seat for the shower that we picked out, which hangs over the tub so much that the shower curtain won't go round it: flooding awaits. And of course with that installed, no room in the tub for me to take a bath....but we shall work this all out.
And so at the moment there is a bedside commode and/or raised toilet seat with grab bars sitting in the living/dining room. Anyone in need of one: unused, right out of the box, just let me know. Otherwise I will figure out how to get it to East Hampton and store it in our basement with everything else I should throw out.
So when in the city give a call and come visit. Some time will be taken up by appointments with physical therapists/occupational therapists/ speech therapists, but they probably won't come till after Labor Day. I imagine in 2 or 3 weeks all that will be done too.
Me? Busy but more relaxed. Sitting around here with Redjeb I am eating up a storm. Uh, Oh. Better watch it. Making up for the lack of appetite from all that angst.
Home at Last, Home at Last....
Redjeb came home today!!! Accident was Monday, July 1 !!!
We are now in our little NYC apartment. I think Redjeb is happy to be home. He has been making himself food all day. Mostly soup, but he also had some solids, but only a little as he has to see what he can tolerate. But he is up and about, doing things in the kitchen and sitting at his computer. A bit slow and balance not too good, but getting around. Still sleeps a lot but now does so on his favorite pink chair (recliner).
Apartment is now quite cluttered as equipment arrived: a raised toilet commode that is quite good, except when installed the bathroom door won't close. Then there is the fancy seat for the shower that we picked out, which hangs over the tub so much that the shower curtain won't go round it: flooding awaits. And of course with that installed, no room in the tub for me to take a bath....but we shall work this all out.
And so at the moment there is a bedside commode and/or raised toilet seat with grab bars sitting in the living/dining room. Anyone in need of one: unused, right out of the box, just let me know. Otherwise I will figure out how to get it to East Hampton and store it in our basement with everything else I should throw out.
So when in the city give a call and come visit. Some time will be taken up by appointments with physical therapists/occupational therapists/ speech therapists, but they probably won't come till after Labor Day. I imagine in 2 or 3 weeks all that will be done too.
Me? Busy but more relaxed. Sitting around here with Redjeb I am eating up a storm. Uh, Oh. Better watch it. Making up for the lack of appetite from all that angst.
Home at Last, Home at Last....
Tuesday, August 27, 2013
Tuesday: The last Full Day
Last full day at the home. Been there 2 1/2 weeks. Seems longer.
Redjeb's food today looked more acceptable, so maybe my foray into the kitchen yesterday paid off.
But still I do not think he is getting enough nutrition. Hopefully when he gets home we''ll be able to get a decent palatable diet underway.
Which reminds me: People often ask what they can bring him. He's tired of sweet things just now. So much of what they had at the home is sweetened including the protein drinks. So for now I'd say stay away from food stuff at least for the next couple weeks. I am hopeful that his swallowing will improve more since it is already quite a bit better, but we still have a ways to go. Perhaps a good book, such as one having something to do with history, spy or detective novels.
Redjeb faced down the staff who have been pressuring him to have another swallowing test. They seemed teed off that he didn't want them to do so, but I must say he may well be right. He said there is just too much over-testing. In this case what they would do after the test would be no different from what they are doing now. So why bother. He's got a point. But they seem to have taken it personally.
The PT and OT have been busy getting Redjeb all ready for going home--including a fancy walker with a seat. I can see him eventually making his way down Third Avenue to Barnes and Noble with this, and even sooner out for morning coffee.
Friends came by again this afternoon and eve, which was a nice break from the routine of the institution. And Redjeb's daughter is still around (but her mother in law left for Georgia today). Nici will be staying with us till Saturday.
Got to get to bed as need to be at the Home early for check out rituals, whatever they may be.
Redjeb's food today looked more acceptable, so maybe my foray into the kitchen yesterday paid off.
But still I do not think he is getting enough nutrition. Hopefully when he gets home we''ll be able to get a decent palatable diet underway.
Which reminds me: People often ask what they can bring him. He's tired of sweet things just now. So much of what they had at the home is sweetened including the protein drinks. So for now I'd say stay away from food stuff at least for the next couple weeks. I am hopeful that his swallowing will improve more since it is already quite a bit better, but we still have a ways to go. Perhaps a good book, such as one having something to do with history, spy or detective novels.
Redjeb faced down the staff who have been pressuring him to have another swallowing test. They seemed teed off that he didn't want them to do so, but I must say he may well be right. He said there is just too much over-testing. In this case what they would do after the test would be no different from what they are doing now. So why bother. He's got a point. But they seem to have taken it personally.
The PT and OT have been busy getting Redjeb all ready for going home--including a fancy walker with a seat. I can see him eventually making his way down Third Avenue to Barnes and Noble with this, and even sooner out for morning coffee.
Friends came by again this afternoon and eve, which was a nice break from the routine of the institution. And Redjeb's daughter is still around (but her mother in law left for Georgia today). Nici will be staying with us till Saturday.
Got to get to bed as need to be at the Home early for check out rituals, whatever they may be.
Monday, August 26, 2013
Monday: The Attack on the Kitchen
Was greeted today by learning that Redjeb's discharge day is now Wednesday. Yes, Wednesday morning!! This is all unreal, but he will be coming home soon. That will present it's own learning curve and frustrations, but he'll be happy to be here and I will have a bed to lie on in the day when I get tired. (Today I went to the family lounge (actually a pretty place) and fell asleep on a soft chair...over stuffed I think they call them).
The discharge date is partly due to everyone's wanting to avoid Labor Day weekend when nothing happens anywhere.
So I stuck my list of what needs to be done on the bulletin board in his room, and the nurse Kelli and I have been trying to make things happen. I'm sure a lot of it will fall on me to do when I get home, but I am pretending that I expect them to do certain things, such as find a doctor to follow his neck surgery. If worse comes to worse he will have to travel an hour and a half each way to see the nice surgeon who did the surgery, but hopefully we can find someone closer. Need someone to tell him when he can get rid of the brace and what else he needs to know about his neck.
Redjeb's daughter Nicole came back from visiting her sister in Virginia and is with her mother in law Maia, who flys back to Georgia tomorrow. They are camped out with me in our apartment. This place really is small but we have made room. We three went out for dinner this eve in Maia's honor and also toasted Redjeb's progress.
Speaking of dinner, I really lost it this eve. Redjeb was hungry as his lunch was pretty sparse and awful, and then when dinner came it was shocking. Just two overly pureed vegetables on a plate and a side of apple sauce. Not wonder he is losing weight. I had been told under no circumstances go to the KITCHEN. But this did it. The nurse who was on duty (someone I had never seen) looked depressed and didn't seem to know or care much what to do. I brow beat her to call the kitchen, which she finally tried but the line was busy. So I went down stairs, got someone to tell me where the kitchen is and barged right in. It is the huge place, totally chaotic looking, and since this was the end of the day, in disarray as they were getting things put away etc. I said in the loudest voice I could muster: I want to speak to the person in charge. Someone pointed to a woman. End of story is that the woman was a nice person (as are most of the people I've dealt with) and of course the mistakes were someone else's responsibility and of course that person had already gone home. But I told her I was not leaving till I had some meat and a decent meal for him, even if it was pureed. Before I left she asked me what problems I had had with the kitchen and I rattled off my list. For what purpose I know not. But I did learn from someone that the kitchen is an outside company that does this on contract. What a racket. When I got back up on the floor the aids were all looking at me wide eyed. They seemed quite amazed that I had actually gone to the kitchen and arrived back with plate in hand, unscathed. I'm probably known as tiger lady there.
I also talked with the nurse about the inefficiency of the other systems and she said it is because they work in "teams" and no one is really in charge. I saw the same thing at Stony Brook. I guess this idea of teams is the new thing. I remember how I always hated group projects at school. Most people did nothing and a couple people (me usually one of them) did all the work. I avoid teams whenever possible, and these health care teams show that without a leader or coordinator the concept just doesn't work in real life.
Got to get up early and get up to the home to be sure all the last minute things get done, or at least some of them do. I have no illusions but keep hoping and pushing. Called Redjeb this eve to say good night and he was down on another floor in their little library, reading. So he is wandering around there. Not sure he's supposed to do so but that's Redjeb. He is ready to come home. Going out for breakfast coffee and making the 4 blocks to Barnes and Noble's I'm sure will be his immediate goals.
The discharge date is partly due to everyone's wanting to avoid Labor Day weekend when nothing happens anywhere.
So I stuck my list of what needs to be done on the bulletin board in his room, and the nurse Kelli and I have been trying to make things happen. I'm sure a lot of it will fall on me to do when I get home, but I am pretending that I expect them to do certain things, such as find a doctor to follow his neck surgery. If worse comes to worse he will have to travel an hour and a half each way to see the nice surgeon who did the surgery, but hopefully we can find someone closer. Need someone to tell him when he can get rid of the brace and what else he needs to know about his neck.
Redjeb's daughter Nicole came back from visiting her sister in Virginia and is with her mother in law Maia, who flys back to Georgia tomorrow. They are camped out with me in our apartment. This place really is small but we have made room. We three went out for dinner this eve in Maia's honor and also toasted Redjeb's progress.
Speaking of dinner, I really lost it this eve. Redjeb was hungry as his lunch was pretty sparse and awful, and then when dinner came it was shocking. Just two overly pureed vegetables on a plate and a side of apple sauce. Not wonder he is losing weight. I had been told under no circumstances go to the KITCHEN. But this did it. The nurse who was on duty (someone I had never seen) looked depressed and didn't seem to know or care much what to do. I brow beat her to call the kitchen, which she finally tried but the line was busy. So I went down stairs, got someone to tell me where the kitchen is and barged right in. It is the huge place, totally chaotic looking, and since this was the end of the day, in disarray as they were getting things put away etc. I said in the loudest voice I could muster: I want to speak to the person in charge. Someone pointed to a woman. End of story is that the woman was a nice person (as are most of the people I've dealt with) and of course the mistakes were someone else's responsibility and of course that person had already gone home. But I told her I was not leaving till I had some meat and a decent meal for him, even if it was pureed. Before I left she asked me what problems I had had with the kitchen and I rattled off my list. For what purpose I know not. But I did learn from someone that the kitchen is an outside company that does this on contract. What a racket. When I got back up on the floor the aids were all looking at me wide eyed. They seemed quite amazed that I had actually gone to the kitchen and arrived back with plate in hand, unscathed. I'm probably known as tiger lady there.
I also talked with the nurse about the inefficiency of the other systems and she said it is because they work in "teams" and no one is really in charge. I saw the same thing at Stony Brook. I guess this idea of teams is the new thing. I remember how I always hated group projects at school. Most people did nothing and a couple people (me usually one of them) did all the work. I avoid teams whenever possible, and these health care teams show that without a leader or coordinator the concept just doesn't work in real life.
Got to get up early and get up to the home to be sure all the last minute things get done, or at least some of them do. I have no illusions but keep hoping and pushing. Called Redjeb this eve to say good night and he was down on another floor in their little library, reading. So he is wandering around there. Not sure he's supposed to do so but that's Redjeb. He is ready to come home. Going out for breakfast coffee and making the 4 blocks to Barnes and Noble's I'm sure will be his immediate goals.
Sunday, August 25, 2013
Sunday: Count down
Tomorrow we may know exactly which day is discharge day. We are hoping for Thursday but we may have been too late in saying our wishes. There are some administrative things that need to be taken care of before one departs.
I think that Redjeb is getting bored with being there. On the other hand he seems to really enjoy sitting in the pretty garden. Also he's been going into the little library and getting books and using the computer there a bit. Funny how a desktop is more usable than the gadgets. He has his laptop there as well as his new Kindle, but seems to like the big screen of the "real" computer.
As usual the food situation was not good today. I don't know who staffs the kitchen on weekends but I am thinking of making a formal protest at some point. He got diet vegetarian for lunch and dinner. We kind of accepted the lunch but with dinner I complained. Then when they got the replacement dinner it had chicken, which is listed as a no (he doesn't like it) on his standing order. Once the weekdays start the kitchen does a little better. This place has such potential to be a really nice nursing/rehab home. It would not even take much to do.
I do wish they'd fire the chief administrator and the kitchen manager. No questions asked. Just get rid of them and get replacements with good track records. But that probably costs money and we know how all that plays out.
Didn't mention that I sneaked out again last night, actually stopped on my way home and saw the new Woody Allen movie: Blue Jasmine. Good acting. Needed some editing and moral of the story nothing new. But some good laughs. Take this from someone who is NOT a Woody Allen fan; used to be in his earlier life. Since Redjeb can't go to the movies I tell him the stories of the movies later.
If you want to send cards, I suggest you send them to our apartment since don't know when he'll be coming home. If you don't have the address email me, as I don't want to put it online. I can take them to him.
And don't forget us when he gets home, as he'll be housebound for quite a while I'm sure. He gets around fine in there, using a walker. But long distances aren't his thing yet and he tires easily. But what a remarkable progress he has made. And the many of you out there with your fingers crossed: Sorry for the inconvenience but could you keep them crossed a little longer?
I think that Redjeb is getting bored with being there. On the other hand he seems to really enjoy sitting in the pretty garden. Also he's been going into the little library and getting books and using the computer there a bit. Funny how a desktop is more usable than the gadgets. He has his laptop there as well as his new Kindle, but seems to like the big screen of the "real" computer.
As usual the food situation was not good today. I don't know who staffs the kitchen on weekends but I am thinking of making a formal protest at some point. He got diet vegetarian for lunch and dinner. We kind of accepted the lunch but with dinner I complained. Then when they got the replacement dinner it had chicken, which is listed as a no (he doesn't like it) on his standing order. Once the weekdays start the kitchen does a little better. This place has such potential to be a really nice nursing/rehab home. It would not even take much to do.
I do wish they'd fire the chief administrator and the kitchen manager. No questions asked. Just get rid of them and get replacements with good track records. But that probably costs money and we know how all that plays out.
Didn't mention that I sneaked out again last night, actually stopped on my way home and saw the new Woody Allen movie: Blue Jasmine. Good acting. Needed some editing and moral of the story nothing new. But some good laughs. Take this from someone who is NOT a Woody Allen fan; used to be in his earlier life. Since Redjeb can't go to the movies I tell him the stories of the movies later.
If you want to send cards, I suggest you send them to our apartment since don't know when he'll be coming home. If you don't have the address email me, as I don't want to put it online. I can take them to him.
And don't forget us when he gets home, as he'll be housebound for quite a while I'm sure. He gets around fine in there, using a walker. But long distances aren't his thing yet and he tires easily. But what a remarkable progress he has made. And the many of you out there with your fingers crossed: Sorry for the inconvenience but could you keep them crossed a little longer?
Saturday, August 24, 2013
Saturday: A Quiet Day
My computer is acting up a bit. Hope it is not getting ready for a crash and I can't remember where I stored my blank CDs when I reorganized. Never good to clean up or reorganize. That is all I would need to deal with right now.
Nothing much new today. Same ol' same ol'. Was a beautiful day though, so spent a good bit of the time in the garden and visited with friends who stopped by. Redjeb looks really great. I'm not sure he feels as great as he looks, but it is wonderful to see the old Redjeb resurfacing. I do hope they will be able to do all the administrative stuff that needs to be done for a Thursday discharge. We made up our minds at the end of the day on Friday, so may have been too late. The head nurse had told me to email her, which I did, so she could get things started over the weekend. I had asked her to confirm, but have not heard back from her. Maybe I was too late in getting my email to her. Who knows. Monday will tell.
I'm still messing with forms at home: printing, copying, getting signed, mailing etc. My auto insurance company told me back in the beginning of July that I had no no-fault insurance coverage for Redjeb on our car policy. So that is the way we have acted and filed things etc. Now it appears that they LIED. Imagine an insurance company lying!! Yeah, right.
So now I have forms to fill out regarding that and various institutional financial offices to notify, etc etc. Then it also now appears that Stony Brook Hospital will not accept the Power of Attorney form that I gave them. I suspect it is because it is an older version of what is now used. The attorney who helped Redjeb with the POA forms years ago told me that this old form is still legal. But that doesn't stop an institution from not accepting it. Guess if one was Mrs Astor or whoever one would sue. In this case it so happens that Redjeb had made a more recent POA which may be acceptable. Who knows. I found it in his drawer the other week but that was after I had given the older one to the hospital.
So my advice again to you all (and to myself) is asap get your forms in order and make sure you have a recent POA. And put them in your refrigerator or somewhere safe and handy.
I had another New York, tired, transportation incident this eve. Was coming back home on the 86th Street Crosstown bus. I had with me my purse (which I had slung across my shoulder/back and a tote which contained my orange hat (those of you may remember my "lost" orange hat from one of the hospital blogs) and some papers. As I stepped off the back door onto the street I heard someone say, "Is that your black bag?" I looked around and a couple young men were holding the bus door open and gesturing toward my former seat. And of course there was the tote happily sitting there. I leaped back onto the bus when the last person exited and was prepared to just ride to the next stop with my bag, when I glanced around to see one of the young men still hanging onto the door, keeping it open so I could again leap out. I thought that was all very nice and thoughtful. See again New Yorkers are wonderful people. And again I did not lose my orange hat.
Nothing much new today. Same ol' same ol'. Was a beautiful day though, so spent a good bit of the time in the garden and visited with friends who stopped by. Redjeb looks really great. I'm not sure he feels as great as he looks, but it is wonderful to see the old Redjeb resurfacing. I do hope they will be able to do all the administrative stuff that needs to be done for a Thursday discharge. We made up our minds at the end of the day on Friday, so may have been too late. The head nurse had told me to email her, which I did, so she could get things started over the weekend. I had asked her to confirm, but have not heard back from her. Maybe I was too late in getting my email to her. Who knows. Monday will tell.
I'm still messing with forms at home: printing, copying, getting signed, mailing etc. My auto insurance company told me back in the beginning of July that I had no no-fault insurance coverage for Redjeb on our car policy. So that is the way we have acted and filed things etc. Now it appears that they LIED. Imagine an insurance company lying!! Yeah, right.
So now I have forms to fill out regarding that and various institutional financial offices to notify, etc etc. Then it also now appears that Stony Brook Hospital will not accept the Power of Attorney form that I gave them. I suspect it is because it is an older version of what is now used. The attorney who helped Redjeb with the POA forms years ago told me that this old form is still legal. But that doesn't stop an institution from not accepting it. Guess if one was Mrs Astor or whoever one would sue. In this case it so happens that Redjeb had made a more recent POA which may be acceptable. Who knows. I found it in his drawer the other week but that was after I had given the older one to the hospital.
So my advice again to you all (and to myself) is asap get your forms in order and make sure you have a recent POA. And put them in your refrigerator or somewhere safe and handy.
I had another New York, tired, transportation incident this eve. Was coming back home on the 86th Street Crosstown bus. I had with me my purse (which I had slung across my shoulder/back and a tote which contained my orange hat (those of you may remember my "lost" orange hat from one of the hospital blogs) and some papers. As I stepped off the back door onto the street I heard someone say, "Is that your black bag?" I looked around and a couple young men were holding the bus door open and gesturing toward my former seat. And of course there was the tote happily sitting there. I leaped back onto the bus when the last person exited and was prepared to just ride to the next stop with my bag, when I glanced around to see one of the young men still hanging onto the door, keeping it open so I could again leap out. I thought that was all very nice and thoughtful. See again New Yorkers are wonderful people. And again I did not lose my orange hat.
Friday, August 23, 2013
Friday: Finally the day of "the meeting"
Redjeb seemed upbeat this morn when I arrived. He'd had his OT and swallowing exercises and PT had been moved to the afternoon. So he wasn't wiped out with 2 hours of exercise, like yesterday.
The "meeting" that we've all been waiting for was attended by us and the social worker, the OT (Nina) and the woman in charge of Speech therapy whose name I never quite get. The end result was that we agreed on Sept 4 as the discharge date. There are many things to be put in place before then, like aids they will send to the home (bath bench, handle for the tub). Probably none of that will fit and will just clutter the apartment, but we shall see. Also followup medical appointments and therapies and visiting nurse need to be set up etc. And I rationalized that Redjeb would get all this extra rehab staying there longer.
But by afternoon Redjeb told me that he had been thinking and really wanted to get out of there. I could understand his being tired of the routine there and wanting out of institutions (even though he doesn't remember much at all of the hospital stay). The head nurse Kelli (who is really sharp and efficient) came into our room and said we looked like we were concerned about something. For those of you who have not seen R's room it is directly off the nurses/doctor's station. Should probably have been a nice big office for one of them. So I'm sure they hear much of what we say and we are always sticking our heads around the corner and interrupting them on the computers. Medicine today is a lot of entering stuff into computers.
So we talked to Kelli about R's wanting to leave earlier than what the BIG MEETING had come up with. We were not yet done obsessing about it, at least I wasn't. Redjeb had probably made up his mind this morning. In any case Kelli gave me her email address and asked me to email her if we wanted to leave earlier than planned. She said she thought we could get everything in order on Monday if they knew in time. She wants me to send her a list of what needs to be done and my concerns. You would think they would have a list. I swear I am running some of the unit. Anyway I'm working on my list. And tonight I did email her confirming Redjeb's decision for Thursday Aug 29. That is nice that they are willing to do this after hours and on their weekend time (maybe). At least Kelli is. We shall learn on Monday if this can actually happen last notice like this.
So maybe Redjeb will be coming home SOON.
Stephen Jones wrote in the comment of yesterday's blog that he expects Redjeb to dispose of the walker before coming home. How prescient. In fact two days ago the PT had him using a cane and wanted just that. But she resigned and the new person doesn't come till Monday. So hopefully she'll follow suit. Today there was a substitute PT for the day, and she reprimanded Redjeb for running too fast with the walker. He got mad and they had words. I had to intervene (not something I am usually good at, usually I get into the fray too, but this time my interference got things back on track). In a way she was right in that she fears that he'll fall and hurt himself the way he goes. I told him if he runs and falls down and breaks his hip, I'm not coming to the hospital. Enough already!
One of the nurses told Redjeb in the garden today that he couldn't understand why he hadn't left the place a week ago. He said in places he worked previously Redjeb would have been sent out of there already. But here they had to wait for the xrays to be read by the Ortho guy, Dr . Nachamie.
I'm sure there is more to say, but I'm beat. Took time off this eve and went to a late movie with a friend. First one in months. Saw The Butler. Liked it, very historical about the civil rights movement. Good acting and interesting editing. Only negative was a bit Hollywoody preachy. But that was mainly toward the end.
I've decided that once discharged this blog shall end as well. He'll have a longish road ahead yet, but not worth a daily rant.
Nite.
The "meeting" that we've all been waiting for was attended by us and the social worker, the OT (Nina) and the woman in charge of Speech therapy whose name I never quite get. The end result was that we agreed on Sept 4 as the discharge date. There are many things to be put in place before then, like aids they will send to the home (bath bench, handle for the tub). Probably none of that will fit and will just clutter the apartment, but we shall see. Also followup medical appointments and therapies and visiting nurse need to be set up etc. And I rationalized that Redjeb would get all this extra rehab staying there longer.
But by afternoon Redjeb told me that he had been thinking and really wanted to get out of there. I could understand his being tired of the routine there and wanting out of institutions (even though he doesn't remember much at all of the hospital stay). The head nurse Kelli (who is really sharp and efficient) came into our room and said we looked like we were concerned about something. For those of you who have not seen R's room it is directly off the nurses/doctor's station. Should probably have been a nice big office for one of them. So I'm sure they hear much of what we say and we are always sticking our heads around the corner and interrupting them on the computers. Medicine today is a lot of entering stuff into computers.
So we talked to Kelli about R's wanting to leave earlier than what the BIG MEETING had come up with. We were not yet done obsessing about it, at least I wasn't. Redjeb had probably made up his mind this morning. In any case Kelli gave me her email address and asked me to email her if we wanted to leave earlier than planned. She said she thought we could get everything in order on Monday if they knew in time. She wants me to send her a list of what needs to be done and my concerns. You would think they would have a list. I swear I am running some of the unit. Anyway I'm working on my list. And tonight I did email her confirming Redjeb's decision for Thursday Aug 29. That is nice that they are willing to do this after hours and on their weekend time (maybe). At least Kelli is. We shall learn on Monday if this can actually happen last notice like this.
So maybe Redjeb will be coming home SOON.
Stephen Jones wrote in the comment of yesterday's blog that he expects Redjeb to dispose of the walker before coming home. How prescient. In fact two days ago the PT had him using a cane and wanted just that. But she resigned and the new person doesn't come till Monday. So hopefully she'll follow suit. Today there was a substitute PT for the day, and she reprimanded Redjeb for running too fast with the walker. He got mad and they had words. I had to intervene (not something I am usually good at, usually I get into the fray too, but this time my interference got things back on track). In a way she was right in that she fears that he'll fall and hurt himself the way he goes. I told him if he runs and falls down and breaks his hip, I'm not coming to the hospital. Enough already!
One of the nurses told Redjeb in the garden today that he couldn't understand why he hadn't left the place a week ago. He said in places he worked previously Redjeb would have been sent out of there already. But here they had to wait for the xrays to be read by the Ortho guy, Dr . Nachamie.
I'm sure there is more to say, but I'm beat. Took time off this eve and went to a late movie with a friend. First one in months. Saw The Butler. Liked it, very historical about the civil rights movement. Good acting and interesting editing. Only negative was a bit Hollywoody preachy. But that was mainly toward the end.
I've decided that once discharged this blog shall end as well. He'll have a longish road ahead yet, but not worth a daily rant.
Nite.
Thursday, August 22, 2013
Thursday: Up and Down Day
Redjeb doesn't have much stamina and today PT and OT came one right after the other in the morning and wiped him out for most of the day. Even though we had an order in for one hour in the morn and one in the eve, a new PT person came today and just came right after OT: 2 hours of exercise in a row! Too much!! Hope this gets straightened out tomorrow..and you can be sure I did what I could to not let it happen again...but one never knows..
Despite being wiped out from the above Redjeb brightened each time friends stopped by today. Do come if you can but keep your eye on him, and if he looks like he's fading, perhaps is time to just say enough for today. Though sometimes he dozes off when visitors there but then reawakens. Play by ear but be attentive. I was telling him the other day about people who had called, emailed etc, and he said to me: I didn't know I had so many friends. I guess we don't really count on our fingers (and toes) how many people we "accumulate" in our life and lifetime, especially if we live many decades.
They are starting to make noises about discharge. I think it will be within 2 weeks. The meeting that got cancelled earlier in the week is to happen tomorrow. See what that brings.
On one hand I like that he stays there and gets the exercise as well as the swallowing speech therapy. On the other hand I think he might do well just to be home again. He can get some of those services at home though not as intensive.
Also, related to discharge, Redjeb lost 4 lbs this week on top of the 20 he already lost. I think it is that awful pureed stuff they refer to as food, but also I think he can't eat a lot at one time. Am working on that (though thought had already worked on that).
If he stays till Sept 4, which is a date that keeps being floated as discharge day, the Labor Day weekend will be right before and I wonder if the therapy services will be there then. Saturday is the day of rest there with no therapies, but on the holiday weekend I wonder who will be around to do what. Wondering if he should leave before the weekend or not???
My advice is don't have an accident or get sick in July or August. You run into vacations, and on top of that new residents start July 1 (so they don't know what they are doing). Another group of interns etc don't come till Sept. So extra help is few and far between.
Despite being wiped out from the above Redjeb brightened each time friends stopped by today. Do come if you can but keep your eye on him, and if he looks like he's fading, perhaps is time to just say enough for today. Though sometimes he dozes off when visitors there but then reawakens. Play by ear but be attentive. I was telling him the other day about people who had called, emailed etc, and he said to me: I didn't know I had so many friends. I guess we don't really count on our fingers (and toes) how many people we "accumulate" in our life and lifetime, especially if we live many decades.
They are starting to make noises about discharge. I think it will be within 2 weeks. The meeting that got cancelled earlier in the week is to happen tomorrow. See what that brings.
On one hand I like that he stays there and gets the exercise as well as the swallowing speech therapy. On the other hand I think he might do well just to be home again. He can get some of those services at home though not as intensive.
Also, related to discharge, Redjeb lost 4 lbs this week on top of the 20 he already lost. I think it is that awful pureed stuff they refer to as food, but also I think he can't eat a lot at one time. Am working on that (though thought had already worked on that).
If he stays till Sept 4, which is a date that keeps being floated as discharge day, the Labor Day weekend will be right before and I wonder if the therapy services will be there then. Saturday is the day of rest there with no therapies, but on the holiday weekend I wonder who will be around to do what. Wondering if he should leave before the weekend or not???
My advice is don't have an accident or get sick in July or August. You run into vacations, and on top of that new residents start July 1 (so they don't know what they are doing). Another group of interns etc don't come till Sept. So extra help is few and far between.
Wednesday, August 21, 2013
Wednesday: Feeling Stronger
Today Redjeb said that he can feel himself getting stronger. He walked a lot today using the walker. He is still quite weak and has to watch is balance. The physical therapist wants him to start using a cane, but today was her last day so another PT will be there tomorrow for her input. Cross fingers his eating/swallowing is gradually improving. Maybe the muscles just needed some exercise, since he was fed by a tube for so long. Also they are doing therapy to help him.
He can't remember most of what he has gone through, which is just as well. Amazing what the mind does. But he asks me to tell him things. It must be hard for him to process that all this has happened to him. His one complaint is that this should have happened in the Fall or Winter, so he could have enjoyed the summer with his boats and all.
Friends visited Redjeb this morning and afternoon, which was nice. I was particularly glad someone came this morning and took him to the garden, as I had an appointment and didn't get there till after noon. I think the visits cheer him up, as it can get boring there. He has trouble focusing, so doesn't do much on the computer or Kindle and even reading is a struggle. But each day he tries new things.
Tonight he wanted to go the the little library where they have 2 computers. So we spent some time there. One of the computers was not working and try as I might I couldn't get it to work. A woman patient came down and she wanted to use it. She seemed pretty comfortable with computers but nada. Since it was not too late I phone my nephew Will in Maine. He makes his living re computers and walked me through step by step troubleshooting. Voila! A loose connection re the cable going into the back of the monitor.
Today I had a minor victory with the powers that be. In the afternoon as Redjeb was taken off to PT some workers arrived to glue a guard on the lower wall of his room to protect against scuff marks from wheelchairs. As I've mentioned before this unit is to become soon a cardiovascular unit under NYU auspices. They are decorating and do some crazy things. They wanted to glue this protector pad all along one wall in RJ's room. When I heard this I said no. (You can tell I am probably quite popular there.) The nurse said they were doing it in all the rooms and he said "they" said it had to be done. He said in an hour or two the smell would be gone. I made the argument that adhesives give off toxic irritating fumes, and an hour or two would not be enough for them to be gone-- and I did not think Redjeb should be exposed to this given his recent lung infection etc. I told the nurse I would like to talk to "they." Long story shorter, "they" and I came to a compromise: Redjeb for the night would move to another room, but unfortunately in this one he'd have to share with a new patient who was arriving in the late afternoon.
We moved some of R's stuff to that room and hung out there. Was not too bad till the new guy arrived. We felt our space violated. Redjeb had slept well last night; didn't even take the melatonin, but now I wondered how he'd do with the stranger behind the curtain. Finally Redjeb implored that he'd like to go back to his own room. He has become spoiled; it's like when you finally get to fly first class it is very difficult to go back to economy. So what we did was to air out his own room (for some dumb reason they had closed the door to that room) and hung out in the garden, the library, even the little dining room. Then about 9 o'clock I moved all R's stuff back to his room and hopefully most of the toxic stuff will leave with the ventilation. (He is lucky in that most of the rooms have sealed windows and patients have to use AC. However, his bathroom has a window that can open and creates cross ventilation.) So he was comfy in bed when I left.
One becomes a survivor in these situations. I have learned to hide things just in case (tea/coffee cups, spoons and knives, tea, food, etc.) I think of those in concentration camps who somehow managed to hide things so they could trade. Never felt I could have survived such a place, but maybe I have some of that needed entrepreneurial chutzpah.
He can't remember most of what he has gone through, which is just as well. Amazing what the mind does. But he asks me to tell him things. It must be hard for him to process that all this has happened to him. His one complaint is that this should have happened in the Fall or Winter, so he could have enjoyed the summer with his boats and all.
Friends visited Redjeb this morning and afternoon, which was nice. I was particularly glad someone came this morning and took him to the garden, as I had an appointment and didn't get there till after noon. I think the visits cheer him up, as it can get boring there. He has trouble focusing, so doesn't do much on the computer or Kindle and even reading is a struggle. But each day he tries new things.
Tonight he wanted to go the the little library where they have 2 computers. So we spent some time there. One of the computers was not working and try as I might I couldn't get it to work. A woman patient came down and she wanted to use it. She seemed pretty comfortable with computers but nada. Since it was not too late I phone my nephew Will in Maine. He makes his living re computers and walked me through step by step troubleshooting. Voila! A loose connection re the cable going into the back of the monitor.
Today I had a minor victory with the powers that be. In the afternoon as Redjeb was taken off to PT some workers arrived to glue a guard on the lower wall of his room to protect against scuff marks from wheelchairs. As I've mentioned before this unit is to become soon a cardiovascular unit under NYU auspices. They are decorating and do some crazy things. They wanted to glue this protector pad all along one wall in RJ's room. When I heard this I said no. (You can tell I am probably quite popular there.) The nurse said they were doing it in all the rooms and he said "they" said it had to be done. He said in an hour or two the smell would be gone. I made the argument that adhesives give off toxic irritating fumes, and an hour or two would not be enough for them to be gone-- and I did not think Redjeb should be exposed to this given his recent lung infection etc. I told the nurse I would like to talk to "they." Long story shorter, "they" and I came to a compromise: Redjeb for the night would move to another room, but unfortunately in this one he'd have to share with a new patient who was arriving in the late afternoon.
We moved some of R's stuff to that room and hung out there. Was not too bad till the new guy arrived. We felt our space violated. Redjeb had slept well last night; didn't even take the melatonin, but now I wondered how he'd do with the stranger behind the curtain. Finally Redjeb implored that he'd like to go back to his own room. He has become spoiled; it's like when you finally get to fly first class it is very difficult to go back to economy. So what we did was to air out his own room (for some dumb reason they had closed the door to that room) and hung out in the garden, the library, even the little dining room. Then about 9 o'clock I moved all R's stuff back to his room and hopefully most of the toxic stuff will leave with the ventilation. (He is lucky in that most of the rooms have sealed windows and patients have to use AC. However, his bathroom has a window that can open and creates cross ventilation.) So he was comfy in bed when I left.
One becomes a survivor in these situations. I have learned to hide things just in case (tea/coffee cups, spoons and knives, tea, food, etc.) I think of those in concentration camps who somehow managed to hide things so they could trade. Never felt I could have survived such a place, but maybe I have some of that needed entrepreneurial chutzpah.
Tuesday, August 20, 2013
Tuesdays: A day of Progresses
How do you like that word I think I invented: Progresses.
Finally the orthopedic consult. I got to the home late morning and Redjeb was nowhere to be found. Our friend Dee had gotten there before me and she too had been looking all over for him. Finally I found him on the Ground Floor in the orthopedic clinic waiting room. I didn't get there much too early as before long they whisked him into see the physician consultant. I had heard he was an elderly (my age?) retired specialist from Mt. Sinai. He looked the part and I thought negative thoughts: but now I apologize. He was indeed an experienced doctor, you could tell by the questions he asked and the way he responded. He was a man of few words, yet kindly and listened when you had something to say. No one seemed to know his name: he was "the ortho consult."
The good news is that the good doctor said all had healed. Redjeb has been telling people that for some time. After all we are on the 8th week since the accident. So now the PT people can stop being sooo protective and really push him. They even wanted him to wear a sling on one arm, which he kept taking off cause he said it was worse having it on: kept him off balance and would also weaken the arm. So patients do know their bodies and physicians of today depend too much on their tests....I'm sure I'll get some flack for such a statement, but I did read somewhere that some medical schools are trying to teach the new doctors to listen more to their patients. What a splendid new idea...!!
The other good news related to this is that Redjeb can now walker further than before. Part of this is that they have now given him a walker instead of a cane. With the cane they were trying to have him walk a certain unnatural way, and Redjeb just couldn't get himself to do that. But now with the walker he can walk all the way to the garden. I follow him with the wheelchair just in case he gets tired. He does get out of wind. For those of you who don't know the distances, the garden is on a lower floor so one takes the elevator. For those of us who walk it can take 5-10 minutes. That may not sound like much to you, but when Redjeb arrived at the home a week and a half ago, he could barely make it from the bed to the wheelchair that was a step or two away.
He was very sleepy again today. He took a small dose of sleeping medicine last eve but it left him with a hangover. Not good cause such tiredness can lead to falls, particularly in the elderly (present company included). Doctor suggested melatonin, so I got some today. Not sure if he'll take it this eve. He seems to have night and day mixed up. The exercise wipes him out during the day so he naps deeply but then is wide awake and bored at night. Yet he doesn't have the focus to read much or do his email. I am happily (but slowly) leaning to use the new Kindle. I hope he will get to be comfortable with it soon.
P.S. If you don't see your comments at the end of the post, then whatever you are doing isn't working. Several of you have told me that you have been writing comments, but if they don't appear then.... You do have to have a Google account and long in with your secret words to write comments. Whatever else you may not be doing I cannot say.
Finally the orthopedic consult. I got to the home late morning and Redjeb was nowhere to be found. Our friend Dee had gotten there before me and she too had been looking all over for him. Finally I found him on the Ground Floor in the orthopedic clinic waiting room. I didn't get there much too early as before long they whisked him into see the physician consultant. I had heard he was an elderly (my age?) retired specialist from Mt. Sinai. He looked the part and I thought negative thoughts: but now I apologize. He was indeed an experienced doctor, you could tell by the questions he asked and the way he responded. He was a man of few words, yet kindly and listened when you had something to say. No one seemed to know his name: he was "the ortho consult."
The good news is that the good doctor said all had healed. Redjeb has been telling people that for some time. After all we are on the 8th week since the accident. So now the PT people can stop being sooo protective and really push him. They even wanted him to wear a sling on one arm, which he kept taking off cause he said it was worse having it on: kept him off balance and would also weaken the arm. So patients do know their bodies and physicians of today depend too much on their tests....I'm sure I'll get some flack for such a statement, but I did read somewhere that some medical schools are trying to teach the new doctors to listen more to their patients. What a splendid new idea...!!
The other good news related to this is that Redjeb can now walker further than before. Part of this is that they have now given him a walker instead of a cane. With the cane they were trying to have him walk a certain unnatural way, and Redjeb just couldn't get himself to do that. But now with the walker he can walk all the way to the garden. I follow him with the wheelchair just in case he gets tired. He does get out of wind. For those of you who don't know the distances, the garden is on a lower floor so one takes the elevator. For those of us who walk it can take 5-10 minutes. That may not sound like much to you, but when Redjeb arrived at the home a week and a half ago, he could barely make it from the bed to the wheelchair that was a step or two away.
He was very sleepy again today. He took a small dose of sleeping medicine last eve but it left him with a hangover. Not good cause such tiredness can lead to falls, particularly in the elderly (present company included). Doctor suggested melatonin, so I got some today. Not sure if he'll take it this eve. He seems to have night and day mixed up. The exercise wipes him out during the day so he naps deeply but then is wide awake and bored at night. Yet he doesn't have the focus to read much or do his email. I am happily (but slowly) leaning to use the new Kindle. I hope he will get to be comfortable with it soon.
P.S. If you don't see your comments at the end of the post, then whatever you are doing isn't working. Several of you have told me that you have been writing comments, but if they don't appear then.... You do have to have a Google account and long in with your secret words to write comments. Whatever else you may not be doing I cannot say.
Monday, August 19, 2013
Monday: Nothing predictable in this alternate universe
Today was to be the big day with the ortho consult and the family meeting: Except the ortho consult really isn't until tomorrow (the doctor made a mistake) and so the family meeting has been scheduled for Wednesday, well no, again rescheduled till Friday. I do hope this ortho doctor is on top of things. Thinking of getting Redjeb some kind of consult for an NYU specialist at some point, but not sure he is up to a cab ride and waiting in a doctor's office.
I kept encouraging Redjeb to eat today, despite the fact that this pureed food is nothing any of us would want. We discovered that one of the problems is that by the time the food reached him and he felt like eating, the food was luke warm. So now we nuke it or have one of the aids do so. Makes a difference.
Redjeb is frustrating the physical therapists as he does things his way. That shows he is getting better. That is the Redjeb I know (and sometimes get frustrated with myself, but am now happy to see that characteristic reasserting itself).
As usual spent time in the garden.
He still sleeps a lot during the day and what annoys him is that he then is full awake all night. They may let him take a sleeping pill if that continues, so he shall see. Despite it all, Redjeb mentioned to me that he was feeling a little better this eve.
I kept encouraging Redjeb to eat today, despite the fact that this pureed food is nothing any of us would want. We discovered that one of the problems is that by the time the food reached him and he felt like eating, the food was luke warm. So now we nuke it or have one of the aids do so. Makes a difference.
Redjeb is frustrating the physical therapists as he does things his way. That shows he is getting better. That is the Redjeb I know (and sometimes get frustrated with myself, but am now happy to see that characteristic reasserting itself).
As usual spent time in the garden.
He still sleeps a lot during the day and what annoys him is that he then is full awake all night. They may let him take a sleeping pill if that continues, so he shall see. Despite it all, Redjeb mentioned to me that he was feeling a little better this eve.
Sunday, August 18, 2013
Sunday: Lots of exercise
Redjeb gets physical therapy 6 days a week (skips Saturday). So today he had a really good PT who only works weekends, and she really had him do all kinds of interesting exercises. On top of that he had occupational therapy in the morning. And on top of that, forgetting that he was to have PT today, he (with my encouragement) walked almost the entire way to the garden using his wheelchair as a walker). He got really tired though so had to sit on the chair the last few yards. But it is good to see that he is getting stronger and more able physically.
Everyone says Redjeb looks great and the physical therapist who saw him today was shocked to learn his age. She thought he was in his early 70s. Others have said the same. Me? I look like the one who has been hit by a truck (car I mean). But I am a lot more rested than before. There is still underlying stress re RJs health, the insurance crap, etc. But much is more under control, and I am in my little apartment with my "things."
Redjeb was telling friends who stopped by today (Marilyn and Fred at whose house I stayed in Port Jeff) that while in the hospital he had these feelings that he was in a Control Room and could not get out cause all the names, including his, were misspelled and had to be spelled right to get out. The other names that were misspelled were names from Kafka. It was this same "dream" that caused him to call me that day a couple weeks ago when I had gone to NYC and begged me not to abandon him. And it was Fred and friend Philip who answered my call to go see him ASAP. And very soon thereafter Doug and Carol who also live on LI rushed to the rescue too. By the time I got there that eve he seemed quite content. I do believe the reassuring familiar faces came at the very right time. But in many ways this was not a dream nor hallucination, as he was really like a prisoner in the hospital, unable to exercise his will, not understanding what was going on, being drugged and not able to escape.
Tomorrow is supposed to be a big day. Some consultant is supposed to look at the tons of xrays they took last week and say what has healed and what has not so far. Since RJ doesn't have pain, I suspect much has healed.
There is to be a "family meeting" in the afternoon to discuss the results, what plans they will have based on them, such as what kinds of PT they can do, and when they estimate he will be discharged. I know he really wants out of there, though he does admit it is a nice place. There are lots of things that don't work right there, starting with the kitchen, but basically it is not like the kind of nursing home that we usually picture. It is clean, (doesn't smell, as someone pointed out today), is basically quiet (except for the damn buzzer/ringers that go off all the time), and is tastefully done (even the old part of the place).
People keep asking how I am doing and saying they are worried about me. Even though I am fine, I tell you, you almost lost me this evening. I got on the downtown #1 subway, dragging a small suitcase with me (filled with stuff taking home from his room that he doesn't need). The car that I got on was very hot, as the AC was not working. I planned to jump off at the next stop and run on the platform into the adjoining car. But just then several people started through the doors inside that connect the subway cars to each other. I never go through those doors as is dangerous to jump from one car to the next, but when I saw the others moving that way to the next cooler car, I decided to join them. However, I was at the end of the pack, and just as I got to the part where you step from one car to the next--with just a partial grate on the side connecting the cars--the guy ahead of me let the door slam into my face. At the very same time the train gave a jerk as it started up. I lost my balance and began to fall backwards (cause of the suitcase I was dragging). As I was trying to steady myself, well aware of the moving train and the tracks which I could see off to the side, the door behind me started to close, almost trapping me between the cars. I say almost, cause superman flew to the rescue in the form of a nice young man (Oh, if I were 23 again) who opened the door behind me and held me upright.
I thanked him profusely, rather embarrassed at my stupidity. Then he and I both moved to the cooler car at the next stop, running from door to door on the platform. Five minutes later believing that I had survived that ordeal quite well, I did manage to fall up the steps exiting the station. Another young man came to my rescue and even offered to take the bag. I refused, insisted all was well, and actually made it home unscathed. Maybe I am a bit tired or whatever. But I tell you, New Yorkers are great.
Everyone says Redjeb looks great and the physical therapist who saw him today was shocked to learn his age. She thought he was in his early 70s. Others have said the same. Me? I look like the one who has been hit by a truck (car I mean). But I am a lot more rested than before. There is still underlying stress re RJs health, the insurance crap, etc. But much is more under control, and I am in my little apartment with my "things."
Redjeb was telling friends who stopped by today (Marilyn and Fred at whose house I stayed in Port Jeff) that while in the hospital he had these feelings that he was in a Control Room and could not get out cause all the names, including his, were misspelled and had to be spelled right to get out. The other names that were misspelled were names from Kafka. It was this same "dream" that caused him to call me that day a couple weeks ago when I had gone to NYC and begged me not to abandon him. And it was Fred and friend Philip who answered my call to go see him ASAP. And very soon thereafter Doug and Carol who also live on LI rushed to the rescue too. By the time I got there that eve he seemed quite content. I do believe the reassuring familiar faces came at the very right time. But in many ways this was not a dream nor hallucination, as he was really like a prisoner in the hospital, unable to exercise his will, not understanding what was going on, being drugged and not able to escape.
Tomorrow is supposed to be a big day. Some consultant is supposed to look at the tons of xrays they took last week and say what has healed and what has not so far. Since RJ doesn't have pain, I suspect much has healed.
There is to be a "family meeting" in the afternoon to discuss the results, what plans they will have based on them, such as what kinds of PT they can do, and when they estimate he will be discharged. I know he really wants out of there, though he does admit it is a nice place. There are lots of things that don't work right there, starting with the kitchen, but basically it is not like the kind of nursing home that we usually picture. It is clean, (doesn't smell, as someone pointed out today), is basically quiet (except for the damn buzzer/ringers that go off all the time), and is tastefully done (even the old part of the place).
People keep asking how I am doing and saying they are worried about me. Even though I am fine, I tell you, you almost lost me this evening. I got on the downtown #1 subway, dragging a small suitcase with me (filled with stuff taking home from his room that he doesn't need). The car that I got on was very hot, as the AC was not working. I planned to jump off at the next stop and run on the platform into the adjoining car. But just then several people started through the doors inside that connect the subway cars to each other. I never go through those doors as is dangerous to jump from one car to the next, but when I saw the others moving that way to the next cooler car, I decided to join them. However, I was at the end of the pack, and just as I got to the part where you step from one car to the next--with just a partial grate on the side connecting the cars--the guy ahead of me let the door slam into my face. At the very same time the train gave a jerk as it started up. I lost my balance and began to fall backwards (cause of the suitcase I was dragging). As I was trying to steady myself, well aware of the moving train and the tracks which I could see off to the side, the door behind me started to close, almost trapping me between the cars. I say almost, cause superman flew to the rescue in the form of a nice young man (Oh, if I were 23 again) who opened the door behind me and held me upright.
I thanked him profusely, rather embarrassed at my stupidity. Then he and I both moved to the cooler car at the next stop, running from door to door on the platform. Five minutes later believing that I had survived that ordeal quite well, I did manage to fall up the steps exiting the station. Another young man came to my rescue and even offered to take the bag. I refused, insisted all was well, and actually made it home unscathed. Maybe I am a bit tired or whatever. But I tell you, New Yorkers are great.
Saturday, August 17, 2013
Saturday: In the sun
Redjeb really likes to get out of his room and sit in the garden, so we do it as often as possible. This morning, Sam, a friend's son we've know since childhood stopped by and spent time with Redjeb and then I joined them. He's a heavy metal band singer and has hair (or no hair) just like Redjeb's. All Redjeb was missing were his tattoos.
In the afternoon a few friends came by and we hung out in the garden again. Redjeb gets tired sitting but he hung out as long as he could. I do hope the nice weather holds up as this is a good diversion.
At the same time we were down there, there was some musical entertainment in the auditorium. Some guy was really letting go on the xylophone. Shades of Lionel Hampton.
Everyone commented that Redjeb looked great. The funny thing is that he has looked great throughout this, except now he is thinner. I think that is what made the doctors keep trying. He always had good color (years of sailing painting his skin) and good bones. He just has low energy and can't eat much cause of that stupid swallowing difficulty. Hopefully in time as he gets stronger that will straighten out too.
Redjeb naps a lot during the day, so if you visit and he's asleep just wake him up gently. He's happy to see people. Problem is he's awake during the night cause he sleeps in the day. Any of you folks wandering around at 2 in the morning can drop by (just kidding). But he does have more energy in the AM and mid day. Now they have rescheduled M-F his physical therapy to about 2 I think. Although one never knows. So when you ask the best times I'm never sure what to say. Just be prepared to wait around. If you have limited amount of time, you may have to just hit it lucky. Weekends are slow and Saturdays particularly so, as it is the Jewish sabbath. Not even much staff around.
Some of you have asked what to bring. I'm not sure what to say as he's on a restricted soft diet and is getting tired of sweet things. Best not to bring much as room is already cluttered. If you get a good idea of something you want to bring, maybe you should check with me before buying it, just in case.
In the afternoon a few friends came by and we hung out in the garden again. Redjeb gets tired sitting but he hung out as long as he could. I do hope the nice weather holds up as this is a good diversion.
At the same time we were down there, there was some musical entertainment in the auditorium. Some guy was really letting go on the xylophone. Shades of Lionel Hampton.
Everyone commented that Redjeb looked great. The funny thing is that he has looked great throughout this, except now he is thinner. I think that is what made the doctors keep trying. He always had good color (years of sailing painting his skin) and good bones. He just has low energy and can't eat much cause of that stupid swallowing difficulty. Hopefully in time as he gets stronger that will straighten out too.
Redjeb naps a lot during the day, so if you visit and he's asleep just wake him up gently. He's happy to see people. Problem is he's awake during the night cause he sleeps in the day. Any of you folks wandering around at 2 in the morning can drop by (just kidding). But he does have more energy in the AM and mid day. Now they have rescheduled M-F his physical therapy to about 2 I think. Although one never knows. So when you ask the best times I'm never sure what to say. Just be prepared to wait around. If you have limited amount of time, you may have to just hit it lucky. Weekends are slow and Saturdays particularly so, as it is the Jewish sabbath. Not even much staff around.
Some of you have asked what to bring. I'm not sure what to say as he's on a restricted soft diet and is getting tired of sweet things. Best not to bring much as room is already cluttered. If you get a good idea of something you want to bring, maybe you should check with me before buying it, just in case.
Friday, August 16, 2013
Friday: A week since we arrived
This marks a week since we arrived at the nursing home. Seems like Redjeb has been there a long time.
Morning started with his having the swallowing test with extra special machinery that could see what's what. He wasn't going to do it, but guess they convinced him. I too thought it wouldn't show much, but unfortunately did show swallowing problems etc. That interferes with his eating anything interesting. Only soft foods. But Redjeb although not liking this does what he has to.
Now the speech therapists have to give him exercises to help him. By the way this is not the same condition that he has had before; now a different problem. Drats.
We spent a good bit of the mid day out in the garden. Friends dropped by, and it was quite pleasant.
The nurse finally managed to get an "extender" for the bed. Even though Redjeb is not as tall as he used to be his feet didn't quite fit. Now he can really stretch out.
Bit by bit things are falling into place.
I went with Redjeb to the "gym" on his floor and watched PT this afternoon. He managed to walk quite far with a walker, but the therapists were right with him. They consider it walking but it is walking with escorts breathing down your neck. He did get tired a few times and had to sit, but then got up and continued. No way could he do this when we arrived last week.
I ran downtown to the dentist in the late afternoon and then came back up for an hour, as he desperately wanted to go back to the garden again. Although he has a big room I think he is getting claustrophobic. So we sat outside and then I went home, back to my apartment. I took Tom, my nephew out for dinner, as tonight he marks the end of his convalesce: It was the end of March when he had an accident with his motorcycle (and a car) and got a badly injured leg. But he is walking quite well now and tomorrow will head back up to Connecticut where he lives, and commute from there. So we will make room again, this time for Redjeb to start his convalescence.
Morning started with his having the swallowing test with extra special machinery that could see what's what. He wasn't going to do it, but guess they convinced him. I too thought it wouldn't show much, but unfortunately did show swallowing problems etc. That interferes with his eating anything interesting. Only soft foods. But Redjeb although not liking this does what he has to.
Now the speech therapists have to give him exercises to help him. By the way this is not the same condition that he has had before; now a different problem. Drats.
We spent a good bit of the mid day out in the garden. Friends dropped by, and it was quite pleasant.
The nurse finally managed to get an "extender" for the bed. Even though Redjeb is not as tall as he used to be his feet didn't quite fit. Now he can really stretch out.
Bit by bit things are falling into place.
I went with Redjeb to the "gym" on his floor and watched PT this afternoon. He managed to walk quite far with a walker, but the therapists were right with him. They consider it walking but it is walking with escorts breathing down your neck. He did get tired a few times and had to sit, but then got up and continued. No way could he do this when we arrived last week.
I ran downtown to the dentist in the late afternoon and then came back up for an hour, as he desperately wanted to go back to the garden again. Although he has a big room I think he is getting claustrophobic. So we sat outside and then I went home, back to my apartment. I took Tom, my nephew out for dinner, as tonight he marks the end of his convalesce: It was the end of March when he had an accident with his motorcycle (and a car) and got a badly injured leg. But he is walking quite well now and tomorrow will head back up to Connecticut where he lives, and commute from there. So we will make room again, this time for Redjeb to start his convalescence.
Thursday, August 15, 2013
Thursday: Mixed
Redjeb got a hair cut today, and boy did he get one! A buzz cut. He had been talking about doing this for months and finally got his chance. They have a beauty/barber shop on the top floor with a view that looks toward St John The Divine Cathedral up near Columbia U. He was taken up there and zzzzz hair gone. Now all he needs are some tattoos and maybe a gem in his ear. When he puts on some more weight he will look really cool. And all this for only $12. No tipping allowed.
This place and the hospital have these separate specialties that look at you and make decisions. There seems to be no one who pulls the whole thing together. The very nice competent doctor in charge Mon-Friday is often by-passed by teams who just decide something. When I tell him something, he looks surprised. But he does get things done when he can, and there is also a very competent nurse who does her best too.
But my sense is that this nursing home is a lot of cosmetics. It looks very nice and there are very nice attributes. But systems just don't work; requests need to be made over and over, and not just by me but by the staff. Please make sure you have an advocate, preferably someone who can be there a good bit of the time and who is not afraid to speak up--should you or someone you know go into a hospital or nursing home. There is a lot of slippage.
But to go to nicer things. They have parties frequently for various units and this evening was for our floor/unit. Redjeb was too tired to go, so Maia (Nicole's mother-in-law) and myself went down to the garden to partake. Wow! They had an absolutely beautiful buffet that included delicious spanakopita, little hot dogs in dough (I forget what people call them), lovely cheeses including brie, melons, berries, and a variety of petit fours. Free wine. White linen table clothes. And live music in the background. Maia and I enjoyed ourselves but felt bad that Redjeb was not up to being there and partaking.
Despite the fact that he was exhausted today, I noticed that for getting around his room (on the rare occasions that he does) that he walks rather than taking the chair. When we arrived last week, he could barely walk the couple steps from bed to chair. Now when he goes to the bathroom he walks by holding onto chairs, etc. Not very safe, but you know Redjeb, he just does it. But it does mean that he is a little stronger. Unfortunately he is still very weak, gets very tired and sleeps a lot.
This place and the hospital have these separate specialties that look at you and make decisions. There seems to be no one who pulls the whole thing together. The very nice competent doctor in charge Mon-Friday is often by-passed by teams who just decide something. When I tell him something, he looks surprised. But he does get things done when he can, and there is also a very competent nurse who does her best too.
But my sense is that this nursing home is a lot of cosmetics. It looks very nice and there are very nice attributes. But systems just don't work; requests need to be made over and over, and not just by me but by the staff. Please make sure you have an advocate, preferably someone who can be there a good bit of the time and who is not afraid to speak up--should you or someone you know go into a hospital or nursing home. There is a lot of slippage.
But to go to nicer things. They have parties frequently for various units and this evening was for our floor/unit. Redjeb was too tired to go, so Maia (Nicole's mother-in-law) and myself went down to the garden to partake. Wow! They had an absolutely beautiful buffet that included delicious spanakopita, little hot dogs in dough (I forget what people call them), lovely cheeses including brie, melons, berries, and a variety of petit fours. Free wine. White linen table clothes. And live music in the background. Maia and I enjoyed ourselves but felt bad that Redjeb was not up to being there and partaking.
Despite the fact that he was exhausted today, I noticed that for getting around his room (on the rare occasions that he does) that he walks rather than taking the chair. When we arrived last week, he could barely walk the couple steps from bed to chair. Now when he goes to the bathroom he walks by holding onto chairs, etc. Not very safe, but you know Redjeb, he just does it. But it does mean that he is a little stronger. Unfortunately he is still very weak, gets very tired and sleeps a lot.
Wednesday, August 14, 2013
Wednesday: Not a bad day
Redjeb is getting a bit frustrated by being incapacitated for so long, and the further journey seems daunting to him I do believe. But we who follow his progress are hopeful. Each day he seems a tiny bit better.
Redjeb's mind is much clearer now and he is less confused about morning and night. There was no clock in his current room, as it has only recently been painted and they are still "decorating." But I ran into the woman from plant operations today, and inquired about a clock. She said she wasn't yet allowed to put a nail in the wall!! but she'd give me a clock in the meantime to just lean somewhere. So now there is a clock. It still can confuse cause it doesn't tell you when you wake up from a nap if it is 5 o'clock in the morning or evening. But at least we have a clock.
Redjeb's mind is much clearer now and he is less confused about morning and night. There was no clock in his current room, as it has only recently been painted and they are still "decorating." But I ran into the woman from plant operations today, and inquired about a clock. She said she wasn't yet allowed to put a nail in the wall!! but she'd give me a clock in the meantime to just lean somewhere. So now there is a clock. It still can confuse cause it doesn't tell you when you wake up from a nap if it is 5 o'clock in the morning or evening. But at least we have a clock.
Redjeb was concerned about his eating as he has had some dental problems. But this morning two young men from the dental clinic arrived and voila solved whatever the problems were. Pretty impressive. This is a load off, cause he really needs to eat and put some weight and muscle back on.
Today they also did skillions of x-rays to find out what's mended and what has not. They are perplexed by his lack of pain (and it is not, as I've been told, that his broken neck has affected this, as he can move and has sensation.) But R reminds me that when he had his heart surgery he took no pain killers when he got home and had no particular discomfort. So it may just be how he is wired. But we shall see what the xrays show.
Redjeb even tried to work a bit on his computer, which I brought over, but did not have the stamina or focus to do much. But tomorrow I shall bring him his new Kindle, which my nephew Tom got for him/us. I'm trying to figure it out this eve. Kind of scary when you get these new technological things. A friend reminded me that when I first had my iPhone I started a blog where I aired my frustrations and complaints etc. And now my iPhone is my little friend, who goes with me everywhere, keeps me company, and when possible provides support. OK, OK, so I'm getting carried away here....
Some friends stopped by to see Redjeb today and found us in the garden. There was some entertainment for a while with a guy with guitar singing pop music such as Margaritaville. Actually he was pretty good and I liked the music. Not Redjeb's kind of music, but he didn't complain. Redjeb was happy to see people though by the end of the afternoon he does get a bit tired, so the visits were not too long and he/we went upstairs. So if you stop by in the afternoon, you could call me or just stop by the garden on the first floor (not to be confused with the ground floor where you enter.) We may be there.
Nici and her mother-in-law came by in the evening to stay with Redjeb, so I came back home to learn about the Kindle.
Tomorrow...
Tuesday, August 13, 2013
Tuesday: Hanging out
Redjeb was really tired today. In the morning they had him doing a little walking (with much support). That can wipe him out for the day. But it still is progress in its own right. He gets PT in the am, and I think some kind of occupational therapy in the afternoon....though he loves to be wheeled down to the garden. They have this beautiful garden where he can get sun. Remember, all that time 6 weeks plus, I think, he was inside!
His daughter Nicole came later in the day with her little son and her mother in law from Georgia. They are all here for a while and have been coming to spend time with Redjeb. Nicole is a more positive person than I am, I have discovered. She sees all the progress and I see all the scary things. They say pessimists are usually right, but optimists are happier.
I am glad we are splurging for the private room, as we really take up a lot of space, wheelchair and all.
Staff come in with their clipboards and ask lots of questions. Rehab, PT, administrative, building operations, nursing, general medical, dental, ortho. They are very attentive Monday-Friday. Weekends, sick people are supposed to get better for 2 days I guess, as services drop noticeably and so does the number of attentive staff.
No one can figure out why he has no pain or discomfort. Was the same at the hospital after a couple weeks. So they are going to x-ray him a lot to see what looks broken and what doesn't. For all we know he may have healed from a lot of his breaks; he does have strong bones (unlike osteoporosis me).
The scary part for me, as I've said before, is the breathing (lungs) and swallowing, which I still wonder about and which they are going to re-evaluate.
I get nothing done at home and mounds of paper are starting to form, as I need to organize stuff. But each morning I try to make a dent before going over there.
Nite folks.
His daughter Nicole came later in the day with her little son and her mother in law from Georgia. They are all here for a while and have been coming to spend time with Redjeb. Nicole is a more positive person than I am, I have discovered. She sees all the progress and I see all the scary things. They say pessimists are usually right, but optimists are happier.
I am glad we are splurging for the private room, as we really take up a lot of space, wheelchair and all.
Staff come in with their clipboards and ask lots of questions. Rehab, PT, administrative, building operations, nursing, general medical, dental, ortho. They are very attentive Monday-Friday. Weekends, sick people are supposed to get better for 2 days I guess, as services drop noticeably and so does the number of attentive staff.
No one can figure out why he has no pain or discomfort. Was the same at the hospital after a couple weeks. So they are going to x-ray him a lot to see what looks broken and what doesn't. For all we know he may have healed from a lot of his breaks; he does have strong bones (unlike osteoporosis me).
The scary part for me, as I've said before, is the breathing (lungs) and swallowing, which I still wonder about and which they are going to re-evaluate.
I get nothing done at home and mounds of paper are starting to form, as I need to organize stuff. But each morning I try to make a dent before going over there.
Nite folks.
Monday, August 12, 2013
Sunday/Monday: A lot accomplished
No post last night as went out to EH with Dee yesterday. Stopped by to see Redjeb before I left, but did not see him today, Monday, as when I got back to the city, it was evening and Redjeb was tired from a busy day. This is the first day since the accident that I have not seen him. His daughter Nicole was with him during the afternoon and evening. She said that he did really well today and that they had him practicing walking in the hallway. She said his appetite was the best she'd seen. So that is all really good.
My day in East Hampton was very productive. Neighbors kept popping up to help out, which was really nice. We got the kayaks off the beach (I was concerned about a big storm happening before I get out there again); "my handyman" was able to come at a moment's notice to repair rotting boards on our ramp to the porch; furniture got moved indoors, stuff got unpacked and put away--and I managed to get my hair cut by the woman down the street who has a shop. She was taking a couple weeks off for vacation but kindly worked me in. A neighbor even delivered us to the Jitney. Everyone was so kind and helpful that I felt high and invigorated by it all.
I might add that I was not really polite to my helpful neighbors (and I know you are reading this), as my initial greeting was that I was busy and had no time to talk. But they were all understanding (or pretended) to be, and got right into my mode. I thank you all for your help. You may think that what you did was little, but it was big...and much appreciated. I didn't know I needed (or could use) help.
Although I'm tired this eve, I am much less stressed than I have been. I still don't have a routine and there is still paperwork etc to be dealt with. But it's nice to be home, and even nicer that Redjeb seems to be being taken care of at the "home."
My day in East Hampton was very productive. Neighbors kept popping up to help out, which was really nice. We got the kayaks off the beach (I was concerned about a big storm happening before I get out there again); "my handyman" was able to come at a moment's notice to repair rotting boards on our ramp to the porch; furniture got moved indoors, stuff got unpacked and put away--and I managed to get my hair cut by the woman down the street who has a shop. She was taking a couple weeks off for vacation but kindly worked me in. A neighbor even delivered us to the Jitney. Everyone was so kind and helpful that I felt high and invigorated by it all.
I might add that I was not really polite to my helpful neighbors (and I know you are reading this), as my initial greeting was that I was busy and had no time to talk. But they were all understanding (or pretended) to be, and got right into my mode. I thank you all for your help. You may think that what you did was little, but it was big...and much appreciated. I didn't know I needed (or could use) help.
Although I'm tired this eve, I am much less stressed than I have been. I still don't have a routine and there is still paperwork etc to be dealt with. But it's nice to be home, and even nicer that Redjeb seems to be being taken care of at the "home."
Friday, August 9, 2013
Friday: Back to NYC !!
You folks must be tired of me telling you that I am exhausted, but here I am again. Today started off with me feeling relieved and exhilarated. D-Day, i.e. discharge day for Redjeb. It took the social worker, Roy, mounds of paper work to get us off: insurance papers, hospital papers, nursing home papers. Redjeb was looking forward to getting out of there. And I was signing us off...god knows what I signed.
The ambulance came about 3 and off we went. To my surprise the ride was very bumpy. NY roads are not well maintained. Also trip was long. RJ arrived exhausted and remained so throughout the evening. He has a nice room and everyone is very nice to him. Since he is new, all kinds of people came to ask him questions, but all he wanted to do was sleep.
Redjeb's daughter turned up at 9 pm, so I was able to leave. Going to get some shut-eye.
He is at the
Jewish Home Lifecare
120 West 106 St (between Amsterdam and Columbus)
3rd floor,
I forget the room #
I know folks want to visit and I'm sure he'll be happy to see you. But don't be disappointed: he sleeps a lot, but does wake up. You can always try to rouse him or just wait till he awakes (awakens?). Remember he doesn't hear well and may not have his hearing aids in. So speak normally but distinctly close to his ear if he doesn't understand. Your visit may be short or long, who knows, but I know he'll appreciate seeing friends.
He'll be there a few weeks, I'm sure, so no rush for everyone to visit right away. His daughter Nicole is in the city from Tbilisi and will be there the next few days.
I'm thinking of taking off Sunday and Monday and going to Stony Brook to pick up my car which I left at the hospital garage. My friend Dee (who just moved East from Calif, yeah!!) has offered to drive with me. We will take the car to EH and then come right back, so I can continue being compulsive.
I have been living in AC these past weeks, so missed the hot weather, and now I am appalled at the air (or lack of) in NYC and the humidity. Wish there had been a good rehab center near East Hampton, but such would have required my driving a good piece and with the summer traffic just wasn't in the cards for me. And here in the city, he has friends who can visit.
Enough rambling on. We are at another chapter in this saga.
Take care and thanks for all your emails, etc. Sorry for not answering but I know you are out there, and as yesterday showed I even call upon people, last minute I'm afraid, but that seems to be how the cookies are crumbling right now. Things just seem to pop up.
To sleep, perchance to dream...in my own bed.
The ambulance came about 3 and off we went. To my surprise the ride was very bumpy. NY roads are not well maintained. Also trip was long. RJ arrived exhausted and remained so throughout the evening. He has a nice room and everyone is very nice to him. Since he is new, all kinds of people came to ask him questions, but all he wanted to do was sleep.
Redjeb's daughter turned up at 9 pm, so I was able to leave. Going to get some shut-eye.
He is at the
Jewish Home Lifecare
120 West 106 St (between Amsterdam and Columbus)
3rd floor,
I forget the room #
I know folks want to visit and I'm sure he'll be happy to see you. But don't be disappointed: he sleeps a lot, but does wake up. You can always try to rouse him or just wait till he awakes (awakens?). Remember he doesn't hear well and may not have his hearing aids in. So speak normally but distinctly close to his ear if he doesn't understand. Your visit may be short or long, who knows, but I know he'll appreciate seeing friends.
He'll be there a few weeks, I'm sure, so no rush for everyone to visit right away. His daughter Nicole is in the city from Tbilisi and will be there the next few days.
I'm thinking of taking off Sunday and Monday and going to Stony Brook to pick up my car which I left at the hospital garage. My friend Dee (who just moved East from Calif, yeah!!) has offered to drive with me. We will take the car to EH and then come right back, so I can continue being compulsive.
I have been living in AC these past weeks, so missed the hot weather, and now I am appalled at the air (or lack of) in NYC and the humidity. Wish there had been a good rehab center near East Hampton, but such would have required my driving a good piece and with the summer traffic just wasn't in the cards for me. And here in the city, he has friends who can visit.
Enough rambling on. We are at another chapter in this saga.
Take care and thanks for all your emails, etc. Sorry for not answering but I know you are out there, and as yesterday showed I even call upon people, last minute I'm afraid, but that seems to be how the cookies are crumbling right now. Things just seem to pop up.
To sleep, perchance to dream...in my own bed.
Wednesday, August 7, 2013
Wednesday: Home?
Tonight is the first night since the end of June that I will sleep in my own bed...so to speak. I will be sleeping on the couch, as my nephew Tom has been living here in the NYC apartment for a few months recovering from being hit by a car while riding his new motorcycle. The couch is fine though, as I recently bought a new nifty mattress for it. Just hate having to open and close the dang thing.
I came into the city as I have to see an elder attorney tomorrow to help me with the mammoth medicaid application that we will need to fill out to help pay for the humongous bills that are being run up. Had to dig through Redjeb's papers hoping to find things that she may ask for.
So tired as did not sleep well last eve. Now this eve I get an upsetting phone call from the social worker that they may move him to a nursing home in the city (NYC) tomorrow (Thurs) and the ones that I liked either don't have an available bed, or won't take him cause he's a non-fault accident case. That no-fault insurance is a real pain. If I ever get my feisty self back I will speak to some State representative and see about doing something major about that insurance. Is probably one of those compromise bills that sounds good but just makes everything more difficult in the end.
Anyway I am nervous this eve about which home he will get into and will it be OK. The social worker is still trying to see what he can do but unfortunately he's taking the day off tomorrow and someone who doesn't know us will be making these last minute decisions. I hope that Redjeb understands what is going on. Sometimes he is lucid and other times not. I think his poor hearing plays a role in this, but I am afraid to leave his hearing aids there, as I understand it is a good way to lose them.
I had planned to go back to Stony Brook tomorrow, but now if Redjeb is to be moved makes sense to stay here. Also, I'm supposed to be visiting nursing homes, not that it makes any difference as we don't have a lot of choice given bed availability etc. I will have to get out there soon though, as I left my car in the hospital parking garage and it can only be there a week or you get fined. Will drive it one of these days soon to East Hampton and leave it there.
You can see my life is not dull...just me is dull right now.
I came into the city as I have to see an elder attorney tomorrow to help me with the mammoth medicaid application that we will need to fill out to help pay for the humongous bills that are being run up. Had to dig through Redjeb's papers hoping to find things that she may ask for.
So tired as did not sleep well last eve. Now this eve I get an upsetting phone call from the social worker that they may move him to a nursing home in the city (NYC) tomorrow (Thurs) and the ones that I liked either don't have an available bed, or won't take him cause he's a non-fault accident case. That no-fault insurance is a real pain. If I ever get my feisty self back I will speak to some State representative and see about doing something major about that insurance. Is probably one of those compromise bills that sounds good but just makes everything more difficult in the end.
Anyway I am nervous this eve about which home he will get into and will it be OK. The social worker is still trying to see what he can do but unfortunately he's taking the day off tomorrow and someone who doesn't know us will be making these last minute decisions. I hope that Redjeb understands what is going on. Sometimes he is lucid and other times not. I think his poor hearing plays a role in this, but I am afraid to leave his hearing aids there, as I understand it is a good way to lose them.
I had planned to go back to Stony Brook tomorrow, but now if Redjeb is to be moved makes sense to stay here. Also, I'm supposed to be visiting nursing homes, not that it makes any difference as we don't have a lot of choice given bed availability etc. I will have to get out there soon though, as I left my car in the hospital parking garage and it can only be there a week or you get fined. Will drive it one of these days soon to East Hampton and leave it there.
You can see my life is not dull...just me is dull right now.
Tuesday, August 6, 2013
Tues: Still here
Another emotionally exhausting day. Redjeb slept most of the day, waking a bit every hour or so, wondering why I am still there, thinking I have spent the night not sleeping, as he thinks it is early morning when it is evening. Even the window nearby does not help him keep track of what day or time of day it is. The days and time drag on. Poor guy. This is all so hard on him.
They took the trach out today. He is sort of eating a little bit of the pureed food now but makes a face. Did eat some of the pretend chocolate mousse.
My brother is still here, and we manage to go out for meals, acting as if life is normal, but our conversations and current life and life style are anything but.
Enough for now. Going to bed.
They took the trach out today. He is sort of eating a little bit of the pureed food now but makes a face. Did eat some of the pretend chocolate mousse.
My brother is still here, and we manage to go out for meals, acting as if life is normal, but our conversations and current life and life style are anything but.
Enough for now. Going to bed.
Monday, August 5, 2013
Monday: Are we starting week 6?
I'm losing track of time. How many weeks has it been since July 1?
Redjeb "passed" the swallowing test today. They did a big study of his swallowing and apparently feel he is not inhaling food into his lungs. So now he can start to eat pureed food instead of being fed by a tube.
Redjeb was up and having conversation in a chair for some time today, but by eve he was out of it. Hopefully the ups will continue to be bigger than the downs.
Nite.
Redjeb "passed" the swallowing test today. They did a big study of his swallowing and apparently feel he is not inhaling food into his lungs. So now he can start to eat pureed food instead of being fed by a tube.
Redjeb was up and having conversation in a chair for some time today, but by eve he was out of it. Hopefully the ups will continue to be bigger than the downs.
Nite.
Saturday, August 3, 2013
Sat: up and down
One of those days: some good, some down. I am getting tired writing these posts and you must be getting tired reading them, Things don't change much and not sure how it will resolve. Didn't expect this to go on like this for so long. Doctors really try to make a difference. Nurses do their jobs quite well.
Nurse told me today to take time off for myself. Since I am not living at home, nothing really for me to do. But tomorrow my brother and I will take some time and go for a drive and look at the Sound. Maybe find a beach or pretty spot to look at the water. Then see Redjeb later in the day.
Nurse told me today to take time off for myself. Since I am not living at home, nothing really for me to do. But tomorrow my brother and I will take some time and go for a drive and look at the Sound. Maybe find a beach or pretty spot to look at the water. Then see Redjeb later in the day.
Friday, August 2, 2013
Friday: Another Day
When I write these blogs I try not to be too pessimistic. But today I am feeling the weight. Redjeb continues to be confused most of the time, not really understanding or remembering why he is in the hospital nor his injuries, nor what they are doing to him. I understand that last eve he tore the feeding tube out of his nose. This is serious as he cannot swallow without aspirating some into his lungs. The doctor tried to put the tube back last eve and today, but today he ripped it out again.
One might say well maybe he is telling us something...I almost wish so, but I do believe it is his confusion and discomfort. In the midst of trying to reinsert the tube today, the nurses were telling him that if he were to go home with me he needed to be strong etc. He heard go home with me and his eyes lit up, and he asked if I had brought him a clean shirt. This touched my heart. I assured him that indeed I had clean clothes for him in the car, but he was not yet ready to go home. He looked incredulous.
He also asked what to give the nurses for a gift, they have been so caring.
He continues to ask for chocolate ice cream, not understanding why he can't have any. He is not allowed ice cream, because when it melts in your mouth it turns to water and he might aspirate that, and aspirate into the lungs is something he has done. I try to explain but to no avail. He is used to eating ice cream and Ensure when having his usual eating problems. But this is different. The doctor decided to think "outside the box" and allowed chocolate milk over ice, that was served on a little sponge on a stick that he could suck on. He seemed satisfied but not overly, as of course it was not Haagen Das.
Although I can understand much of what he says now, he has an enormous amount of congestion from the lung infection that interferes with his breathing, nutrition, and speech...and of course there is the trach. I am touched by these glimpses of Redjeb as he used to be, but it is not clear that he will ever be that person again. I am deeply saddened by this.
On a positive side he is getting somewhat physically stronger. They moved him to sit up in the recliner chair today and when it was time for him to go back to the bed, he fought off the three nurses. At first they didn't understand, but then it became clear that what he wanted was to stand up himself and move himself in that direction (with a little help but not much). A first.
A weekend is coming. The hospital seems to go to sleep. And I need to sleep. Didn't sleep as well last eve as I had expected. I will awake tomorrow to this alternate universe in which I am living....and Redjeb too.
One might say well maybe he is telling us something...I almost wish so, but I do believe it is his confusion and discomfort. In the midst of trying to reinsert the tube today, the nurses were telling him that if he were to go home with me he needed to be strong etc. He heard go home with me and his eyes lit up, and he asked if I had brought him a clean shirt. This touched my heart. I assured him that indeed I had clean clothes for him in the car, but he was not yet ready to go home. He looked incredulous.
He also asked what to give the nurses for a gift, they have been so caring.
He continues to ask for chocolate ice cream, not understanding why he can't have any. He is not allowed ice cream, because when it melts in your mouth it turns to water and he might aspirate that, and aspirate into the lungs is something he has done. I try to explain but to no avail. He is used to eating ice cream and Ensure when having his usual eating problems. But this is different. The doctor decided to think "outside the box" and allowed chocolate milk over ice, that was served on a little sponge on a stick that he could suck on. He seemed satisfied but not overly, as of course it was not Haagen Das.
Although I can understand much of what he says now, he has an enormous amount of congestion from the lung infection that interferes with his breathing, nutrition, and speech...and of course there is the trach. I am touched by these glimpses of Redjeb as he used to be, but it is not clear that he will ever be that person again. I am deeply saddened by this.
On a positive side he is getting somewhat physically stronger. They moved him to sit up in the recliner chair today and when it was time for him to go back to the bed, he fought off the three nurses. At first they didn't understand, but then it became clear that what he wanted was to stand up himself and move himself in that direction (with a little help but not much). A first.
A weekend is coming. The hospital seems to go to sleep. And I need to sleep. Didn't sleep as well last eve as I had expected. I will awake tomorrow to this alternate universe in which I am living....and Redjeb too.
Thursday, August 1, 2013
Thursday: Out of the ICU
Redjeb was moved from the Intensive Care Unit to a new room in the basement in the burn unit of all places. Actually it may sound bad but is a good place for him. He has a room of his own and the nurses station for all patients is right out the door. The nurse is easy to find and it is a small unit. I think they just needed a bed for him to leave the ICU, but the social worker had said maybe they could find him a room to himself if one became available.
I was told when I got to the hospital that the PT guy had Redjeb "standing" with support and even trying to take a few steps. I was so pleased to hear this, as he is so weak but so eager to get moving.
But then this afternoon he was back to being confused and out of it. That is so hard to see. And that lung congestion. He was a bit more lucid when I left this eve.
Some have asked if I have been to either the NYC apartment or EH house since this happened, and the answer is no. Immediately after the accident Dee and I went back to the house and I gathered up some things for Redjeb that I thought he might need at the hospital and some clothes, knowing that in the ambulance after an accident they cut your clothes open. I lost a favorite sweater that way once. Your down jackets are safe as they don't want all that stuffing floating around in the ambulance.
At that point I though that Redjeb just had broken ribs and would be home soon. So I brought nothing for myself. A couple days later, friends did bring me my computer, some toiletries and an extra pair of jeans and T shirt--and one T top and sweater set "for dress." I wore that this eve when went to dinner with friends. No one knows it is my dress outfit but me. What dress outfit means is: rarely worn. Basically at the hospital I alternate the same two T shirts and jeans, and wear a khaki jacket. I do wash all at the hotel's guest laundry when there. First time I ever did laundry at a hotel. But I can say that I am really bored with my outfits, but have not gotten others as I think each week that this will be my last week living out here in the middle of Long Island. Alas....
I also think of taking a day trip to the city or to EH, but there are always important consults with doctors or the social worker that I do not want to miss, and these come up seemingly spontaneously or as you catch them.
Today was a stressful up and down day and sad in many respects. So am going to hide under the covers. Most of the time I sleep well--from exhaustion.
I was told when I got to the hospital that the PT guy had Redjeb "standing" with support and even trying to take a few steps. I was so pleased to hear this, as he is so weak but so eager to get moving.
But then this afternoon he was back to being confused and out of it. That is so hard to see. And that lung congestion. He was a bit more lucid when I left this eve.
Some have asked if I have been to either the NYC apartment or EH house since this happened, and the answer is no. Immediately after the accident Dee and I went back to the house and I gathered up some things for Redjeb that I thought he might need at the hospital and some clothes, knowing that in the ambulance after an accident they cut your clothes open. I lost a favorite sweater that way once. Your down jackets are safe as they don't want all that stuffing floating around in the ambulance.
At that point I though that Redjeb just had broken ribs and would be home soon. So I brought nothing for myself. A couple days later, friends did bring me my computer, some toiletries and an extra pair of jeans and T shirt--and one T top and sweater set "for dress." I wore that this eve when went to dinner with friends. No one knows it is my dress outfit but me. What dress outfit means is: rarely worn. Basically at the hospital I alternate the same two T shirts and jeans, and wear a khaki jacket. I do wash all at the hotel's guest laundry when there. First time I ever did laundry at a hotel. But I can say that I am really bored with my outfits, but have not gotten others as I think each week that this will be my last week living out here in the middle of Long Island. Alas....
I also think of taking a day trip to the city or to EH, but there are always important consults with doctors or the social worker that I do not want to miss, and these come up seemingly spontaneously or as you catch them.
Today was a stressful up and down day and sad in many respects. So am going to hide under the covers. Most of the time I sleep well--from exhaustion.
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