Mom was up in the geri chair when we came in, and we had a couple of hours of time with her. First, the medical - her cough isn't gone, but hasn't gotten any worse. She's on a 7-day course of antibiotics, so I guess this is to be expected. She's still compulsively moving her right hand. No big changes at present. On to the personal.
Once we got past the "how are you" sorts of questions, I was recounting what people have told us over the phone, and the basics of their lives as we know them. Mom answered a lot, but it is harder and harder to understand her. She also still gives half an answer and stops, so I play multiple choice with suggested ends of sentences. This is a very time-consuming way to hold a conversation, but we manage. This time, after she'd contributed perhaps a dozen lines of conversation in an hour, she flattered me with one very complete thought: "You've done a lot of research."
It became clear that throughout the exchange she did not know I was her son. So I spent the next half hour convincing her that I'm Dan.
Then we called around to friends/family again... after she talked to Vivien and Meryl, we connected with the English relatives. At that point Mom seemed to lose steam in mid-call.
So, I went back to the old standby - I hauled the guitar in.
She seemed both agitated and tired, so I played soft songs, with the hope she'd get some sleep. She did, and we left once she was soundly snoozing.
It's hard to measure her mental decline, because she'd been nearly incommunicado by the time she left New Jersey. Now she's willing to converse but less and less able. Perhaps back in NJ she wasn't able, because she had undiagnosed infections. Perhaps it was her response to "sometimes-visitors." I don't know.
I do know that she's still absent and present day-by-day. What is hard to measure is the degree to which her presence is an illusion of my own making. She's familiar with the idea that "Dan is a musician," so the music goes a much longer way to establishing my identity than talking for an hour.
All of us who've seen her since the stroke know she's not the Estelle we knew, and hasn't been since the day she went to the hospital. The various stages of decline seem to me like markers on a path away from us. On her better days, it's as if sometimes she turns around toward us and waves, but each time from a little bit greater distance. Sometimes she surprises us and comes back toward us a step or two. So what are we to do? I suppose follow he as far as we can, and continue to wave back at her, from whatever distance.
Please pardon my morose woolgathering this time, gentle reader. May the last hours of Hannukah, or "boxing day" for our Christian friends, treat you well.
Love,
Dan/Laura
Monday, December 26, 2011
Thursday, December 22, 2011
Thursday, December 22., 2011
I guess there is a price for every small enjoyment.
Estelle's cough is worse and she is having a problem with phlegm - so the doctor has been called and he's ordered 7 days worth of antibiotics and breathing treatments for her.
Hopefully the infection and/or virus been caught in time and she will not suffer any additional setbacks.
Estelle's cough is worse and she is having a problem with phlegm - so the doctor has been called and he's ordered 7 days worth of antibiotics and breathing treatments for her.
Hopefully the infection and/or virus been caught in time and she will not suffer any additional setbacks.
Wednesday, December 21, 2011
12/21/11 Hanukkah Party At Woodbine
We took Estelle to the Hanukkah party at Woodbine after all. We arrived at Woodbine around 12:45 and Estelle was already all dressed up and waiting in her chair. She was quite alert and so we decided that we'd at least take her down and check out the party. She talked with Meryl and Viv for a bit on the phone and then it was time to go.
I have to tell you - it was an experience!! One I think we all enjoyed. The nursing home is non-denominational and the party was being held by the people in the Activities Department - none of whom are Jewish. But they had worked so much and tried so hard that it was the sweetest, purest, most good-hearted "party" I've attended in a long time. There were approximately 20 people attending, most of them non-Jewish - all of them up to participating as best they could. (And, because it's a nursing home, some were unable to participate at all and others could only do so in a limited manner, but it didn't stop anyone from being there and enjoying themselves.) They had a Menorah, they had a Christmas tree, they had a Santa on the wall. They were, in other words, ready for anything and everything.
The party began with the Activities Director giving a talk on what Hanukkah meant and how it began. He had totally done his research - but unfortunately, it was detailed research which depended on a working knowledge of Judaism which many attendees did not possess. His pronunciation was also horrendous - but he tried, oh how he tried. At one point Dan and one of Estelle's fellow Jewish residents began helping him out and he pleadingly asked if either one of them would please take over.
Never one to shrink from a challenge, Dan did so. Hence, the picture above. Menorah in hand, Dan gave a beautiful rendition of the Hanukkah story while Estelle smiled and nodded her head and occasionally added a few comments which were, unfortunately, unintelligible, but she seemed to be enjoying herself fully, anyhow.
There was a question and answer period afterwards which Dan handled beautifully - the only thing he could not remember was the name of the type of cookie which is often served at Hanukkah time. (Something with fruit rolled up inside a pastry shell. I could only think of Kolachki's - which is a Polish cookie.) For some reason most of the questions concerned food items - what foods are served, when, how often, etc..
At the end of the question/answer session the director once again took over and read off a list of famous Jewish people - one of the residents insisted he was personally acquainted with Einstein.
There had been a singer scheduled to provide the entertainment but unfortunately his mother died this morning and he was, of course, unable to be present. No worries, the staff found a Pandora radio station which played nothing but Hanukkah music and, with the appropriate music playing in the background, small sandwiches, chicken wings, cookies and Pink Lemonade were served to all who were capable of eating them.
After the food was served the residents were given their choice of games;
Wheel of Fortune, Smarter Than a Fifth Grader, The Price is Right, etc.. At this point we'd been there for almost 2 hours and Estelle was rapidly tiring. She is still hitting her chin repeatedly and the music seemed to aggravate the motion and so we went and got the nurse and the aide to help us get her back to her room.
Once we were back in her room she asked when we were going to the next party and seemed somewhat disappointed when we told her there were no more parties today. She did then agree that it was time to go to bed and told us that her feet hurt, anyhow.
It might not have been a traditional Hanukkah party and I'm sure it was not what Estelle would have been used to - but she once told me she had danced at a Bedouin wedding and, knowing that, and knowing her tolerance for my own ignorance and her patience in explaining traditions to me, I am confident that, in so far as she understood what was going on, she took this in stride and enjoyed it - if for nothing more than the good intentions which spawned it, the wonderful people who put it together and the enthusiasm and spirit with which they presented it.
Happy Hanukkah to all!!!
Tuesday, December 20, 2011
Tuesday, December 20, 2011
Back home again - finally.
What a messed up morning.
We were told that Estelle's surgery was scheduled for 7AM so Dan decided he'd go with me since he didn't have to be at work until 9AM. We arrived at 6:45 and sat there with Estelle until 8:20AM when we asked what the hold-up was. We were then told that the surgery was actually scheduled for 8AM - they just tell people to get there an hour early. (This is the 4th or 5th time we've been here - they've never told us that before.) Then they told us that the doctor's hadn't even been around yet - so no telling when they'd get to Estelle.
I took Dan to the train station and came back in 20 minutes and she was just leaving for surgery when I returned.
They could not put in the different type of tube. Again, the infection and rawness is just too great. They did put in a bigger tube this time, so maybe that will cut down on some of the leakage. The leakage is the main reason her skin cannot heal. It doesn't matter how scrupulously they keep it clean and dry, if it continuely leaks, it stays wet. If it stays wet, it stays unhealed. When we went back to Woodbine I discussed it with Teena, the head nurse. She's about at her wit's end with it, too. She says it leaks terrible. Always has since the day she arrived. She had the same problem at the Manor. We do not know if the actual insertion site was cut too big or if there is something internal going on but there's really nothing anyone cna do to make it stop leaking. The only other option is to undergo another huge surgery to move the site to a different area but, because Estelle had a large hiatal hernia repair done at the time of the original insertion, that may be impossible. Besides which, mentally and physically, I doubt she's up to another large surgery at this time.
Estelle was quite agitated this time. She spoke alot, but most of it was unintelligable, unfortunately. She wanted to know where she was and why she was there but I don't think she understood the repeated explanation. She recognized Dan but did not recognize or acknowledge me at all. She was hitting and rubbing her face almost constantly. Dan says that she stops if you distract her, but he and I disagree on that one. She stops if you hold her arm but she fights the arm-holding and seems to be hugely disturbed by it. However, it may become necessary to restrain the arm, anyhow. Her entire chin is bright red from where she rubs it and her right eye is also reddened and swollen.
It's all very sad, actually, and neither of us quite knows what to do about any of it. I've arranged for the wound care nurses to come see her at Woodbine. Teena says that the psychiatrist was in to see her yesterday because they called him about the repeated hand movements but he left no notes or new orders. Teena is following up on that one for us since that particular doctor does not accept phone calls from families at all.
Tomorrow is the Hanukkah party - I've asked them to have her dressed and in a reclining wheel chair so we can take her down to it if it seems like a good idea. We're still undecided due to her agitation and a productive cough but we'll wait until the time comes to make a final decision.
I wish the news was better.
What a messed up morning.
We were told that Estelle's surgery was scheduled for 7AM so Dan decided he'd go with me since he didn't have to be at work until 9AM. We arrived at 6:45 and sat there with Estelle until 8:20AM when we asked what the hold-up was. We were then told that the surgery was actually scheduled for 8AM - they just tell people to get there an hour early. (This is the 4th or 5th time we've been here - they've never told us that before.) Then they told us that the doctor's hadn't even been around yet - so no telling when they'd get to Estelle.
I took Dan to the train station and came back in 20 minutes and she was just leaving for surgery when I returned.
They could not put in the different type of tube. Again, the infection and rawness is just too great. They did put in a bigger tube this time, so maybe that will cut down on some of the leakage. The leakage is the main reason her skin cannot heal. It doesn't matter how scrupulously they keep it clean and dry, if it continuely leaks, it stays wet. If it stays wet, it stays unhealed. When we went back to Woodbine I discussed it with Teena, the head nurse. She's about at her wit's end with it, too. She says it leaks terrible. Always has since the day she arrived. She had the same problem at the Manor. We do not know if the actual insertion site was cut too big or if there is something internal going on but there's really nothing anyone cna do to make it stop leaking. The only other option is to undergo another huge surgery to move the site to a different area but, because Estelle had a large hiatal hernia repair done at the time of the original insertion, that may be impossible. Besides which, mentally and physically, I doubt she's up to another large surgery at this time.
Estelle was quite agitated this time. She spoke alot, but most of it was unintelligable, unfortunately. She wanted to know where she was and why she was there but I don't think she understood the repeated explanation. She recognized Dan but did not recognize or acknowledge me at all. She was hitting and rubbing her face almost constantly. Dan says that she stops if you distract her, but he and I disagree on that one. She stops if you hold her arm but she fights the arm-holding and seems to be hugely disturbed by it. However, it may become necessary to restrain the arm, anyhow. Her entire chin is bright red from where she rubs it and her right eye is also reddened and swollen.
It's all very sad, actually, and neither of us quite knows what to do about any of it. I've arranged for the wound care nurses to come see her at Woodbine. Teena says that the psychiatrist was in to see her yesterday because they called him about the repeated hand movements but he left no notes or new orders. Teena is following up on that one for us since that particular doctor does not accept phone calls from families at all.
Tomorrow is the Hanukkah party - I've asked them to have her dressed and in a reclining wheel chair so we can take her down to it if it seems like a good idea. We're still undecided due to her agitation and a productive cough but we'll wait until the time comes to make a final decision.
I wish the news was better.
Monday, December 19, 2011
Georgia
Sorry. This was supposed to have gone on my own personal blog. Yikes! First time I've mixed the two of them up. Hope it's the last!
Anyhow - for anyone who's wondering - this is Georgia, my grand-puppy. She's a constantly smiling 10 month old Pit Bull that's got better facial expression than most people I know.
She also weighs more than I do.
Anyhow - for anyone who's wondering - this is Georgia, my grand-puppy. She's a constantly smiling 10 month old Pit Bull that's got better facial expression than most people I know.
She also weighs more than I do.
Monday, December 19, 2011
Estelle's hospital appointment for tube replacement is 7AM tomorrow, Tuesday, December 20th.
Dan and I will accompany her and, hopefully, she will be able to get the "button tube" this time around. The fact that the tube keeps getting dislodged so frequently is disturbing. We don't know if it's just falling out or if she's actively pulling it out. Every time we're there they've got it covered with her clothing, a pillow and the blankets on top of all of it - but she does try to get at it and it could be that she's succeeding.
Anyhow, it can't be good for her to keep needing to go back and forth to the hospital and have it reinserted.
We were hoping to take her to a Hanukkah party on Wednesday afternoon but now we're unsure if we should. Dan took the day off to be available, we bought her a pretty new outfit to wear and we were looking forward to it, but now we're unsure. The trip and the surgery take alot out of her - and it'll be just 24 hours later. The nurses have also warned us that there's an upper respiratory infection going around. We surely don't want her to catch anything and she was coughing some this weekend as it was.
We'll see how she does with the replacement, how her cough is and we'll play it by ear, I guess.
Dan and I will accompany her and, hopefully, she will be able to get the "button tube" this time around. The fact that the tube keeps getting dislodged so frequently is disturbing. We don't know if it's just falling out or if she's actively pulling it out. Every time we're there they've got it covered with her clothing, a pillow and the blankets on top of all of it - but she does try to get at it and it could be that she's succeeding.
Anyhow, it can't be good for her to keep needing to go back and forth to the hospital and have it reinserted.
We were hoping to take her to a Hanukkah party on Wednesday afternoon but now we're unsure if we should. Dan took the day off to be available, we bought her a pretty new outfit to wear and we were looking forward to it, but now we're unsure. The trip and the surgery take alot out of her - and it'll be just 24 hours later. The nurses have also warned us that there's an upper respiratory infection going around. We surely don't want her to catch anything and she was coughing some this weekend as it was.
We'll see how she does with the replacement, how her cough is and we'll play it by ear, I guess.
Sunday, December 18, 2011
Saturday, 12/17 - Sun. a.m., 12/18
Dan here.
Yesterday we visited briefly. At first Mom was unresponsive, but after a little while, she began to speak and acknowledge my presence. I treated Saturday as her birthday, and showed her all the beautiful flowers (thanks to all who sent them, once again.) She looked at them as I showed them without much interest. I told her about each of the people in her life who loved her, and how well loved she was in general, which got her interest. She responded by asking whether I had the address to Woodbine. I told her the address, and she said I had to find the cards. I told her we had bought beautiful Hannukah cards for you all, and we sent them all out for her, giving her love to you all. On that note, please accept a Happy Hannukah, Merry Christmas, or Happy Holidays from us and from her, blog-style.
In general she was agitated yesterday, with the right arm moving compulsively to her face as we spoke. She's got a very soft velvety glove, so she can't pick at herself, and it provides some padding, so she can't whack herself too hard.
This morning, however, we just received a call to the effect that her feeding tube is out again. My guess is she pulled it out. In any event, they prescribed Zoloft for the compulsive arm movements, and Zoloft can take weeks to build up in one's system. If there's no change soon, however, we'll be lobbying for another drug, at the very least, and if all else fails, for a physical restraint.
Sorry not to be cheerier, but that's the news from Alexandria this morning.
Happy Hannukah to you all,
Dan and Laura
Yesterday we visited briefly. At first Mom was unresponsive, but after a little while, she began to speak and acknowledge my presence. I treated Saturday as her birthday, and showed her all the beautiful flowers (thanks to all who sent them, once again.) She looked at them as I showed them without much interest. I told her about each of the people in her life who loved her, and how well loved she was in general, which got her interest. She responded by asking whether I had the address to Woodbine. I told her the address, and she said I had to find the cards. I told her we had bought beautiful Hannukah cards for you all, and we sent them all out for her, giving her love to you all. On that note, please accept a Happy Hannukah, Merry Christmas, or Happy Holidays from us and from her, blog-style.
In general she was agitated yesterday, with the right arm moving compulsively to her face as we spoke. She's got a very soft velvety glove, so she can't pick at herself, and it provides some padding, so she can't whack herself too hard.
This morning, however, we just received a call to the effect that her feeding tube is out again. My guess is she pulled it out. In any event, they prescribed Zoloft for the compulsive arm movements, and Zoloft can take weeks to build up in one's system. If there's no change soon, however, we'll be lobbying for another drug, at the very least, and if all else fails, for a physical restraint.
Sorry not to be cheerier, but that's the news from Alexandria this morning.
Happy Hannukah to you all,
Dan and Laura
Friday, December 16, 2011
Thursday, December 15, 2011
Well, much to our dismay, and the dismay of everyone who called and/or sent flowers or greetings, Estelle slept through her birthday.
Dan took a few hours off work so that we could get to Woodbine early and spend the late afternoon/evening with her but she was having none of it. We tried to wake her when we arrived around 4:30PM, turned on the lights, moved furniture, shouted, shook her, etc., but she would not budge. We arranged all of her lovely flowers and assembled all of her birthday cards but to no avail. We finally decided we'd go down the street and get some dinner and return but even that did not work. Upon our return an hour later she was still sound asleep and we were unable to wake her. We did, however, succeed in waking her roommate who didn't seem to happy with our efforts.
We will return on Saturday and, hopefully, we can have a belated celebration.
Thanks to everyone who sent flowers and cards. The flowers are all just lovely and the whole room smells delightful. Also a big thank you to everyone who called - Viv, Meryl, Marlene, Michelle and Muriel. We're very sorry that we could not wake her enough to hear your voices.
Monday, December 12, 2011
Sat., Sun., Mon. Dec. 12/10-12/12, 2011
Compressing three days into one post.
Estelle was very much "not with it," this weekend. She did not wake and she did not respond to us at all.
Dan took a few hours off this morning and we stopped in around 10:30AM. To our delight, she was very awake and very much "with it." She initiated small bits of conversation and replied to whatever she heard, although sometimes she was a bit fuzzy on details. She also got a chance to talk to her good friend, Meryl, and to Meryl's grandson, Rafi, on the telephone which she thoroughly enjoyed.
The only down side of today was that she was, once again, striking and rubbing herself in the face. She also seems to spend a good deal of time pulling and pushing at the tube site but the nurses have put a soft sock-mitten on her hand and are keeping the site covered with blankets and a pillow so that she cannot accidentally grasp it and pull it out again.
Hopefully, when we return Thursday to celebrate her birthday she will still be in the same alert mood.
Estelle was very much "not with it," this weekend. She did not wake and she did not respond to us at all.
Dan took a few hours off this morning and we stopped in around 10:30AM. To our delight, she was very awake and very much "with it." She initiated small bits of conversation and replied to whatever she heard, although sometimes she was a bit fuzzy on details. She also got a chance to talk to her good friend, Meryl, and to Meryl's grandson, Rafi, on the telephone which she thoroughly enjoyed.
The only down side of today was that she was, once again, striking and rubbing herself in the face. She also seems to spend a good deal of time pulling and pushing at the tube site but the nurses have put a soft sock-mitten on her hand and are keeping the site covered with blankets and a pillow so that she cannot accidentally grasp it and pull it out again.
Hopefully, when we return Thursday to celebrate her birthday she will still be in the same alert mood.
Monday, December 5, 2011
Sunday, December 4, 2011
Really nothing to say or report. We did not get to Woodbine until around 4PM due to some personal issues which needed to be tended to. Unfortunately, by the time we arrived, both Estelle and her roommate were sound asleep, lights and televisions off.
We tried waking Estelle but she was having none of it. I did check her tube site to make sure it was being taken care of in the specified manner and all looked fine. Her chin and nose are also healing nicely.
We stayed around a little while but she did not stir and rather than keep trying to wake her we decided to let her sleep.
Apologies to anyone who was hoping for a phone call from Estelle. Hopefully we will have better timing next visit.
We tried waking Estelle but she was having none of it. I did check her tube site to make sure it was being taken care of in the specified manner and all looked fine. Her chin and nose are also healing nicely.
We stayed around a little while but she did not stir and rather than keep trying to wake her we decided to let her sleep.
Apologies to anyone who was hoping for a phone call from Estelle. Hopefully we will have better timing next visit.
Thursday, December 1, 2011
Thursday, December 1, 2011
Home from the hospital --- finally. Surgery went as scheduled at 10AM. Unfortunately they could not place the new type of button tube due to inflammation and infection at the tube site. It's a vicious circle - the tube leaks because it does not fit in the folds of Estelle's skin, because it leaks, the skin gets infected, because it gets infected, it does not fit flush against the skin, because it does not fit flush against the skin, it leaks. We need to get something that fits into the fold of skin but we cannot get that until the skin is healed. The skin does not get a chance to heal because of the leakage caused because it does not fit properly and around and around the loop it goes.
The surgeon was very nice. He came out and explained to me why he could not insert the different type of tubing - he explained that he had actually tried but, because the tube will sit flush against her skin instead of having a tube which sticks out, he could not, in good conscience, leave it there due to the rawness of her skin. He said he was afraid that it would cause even more infection and no way to get to it to clear it up because there would be no room underneath the cap as there is now.
They put in a new tube of the old kind for now and spent almost an hour teaching me how to clear up the current infection so that they can insert the newer tube at a later date. It's a 5-step process involving sterile cleaning techniques, a special powder, liquid bandages, skin sealant, protective ointment and a special dressing usually intended for a trach tube but which works just fine for our purposes. I am hoping that the nursing home staff understands it and can keep up with it as it is time-consuming and complicated and needs to be done twice daily. I am going to try to get the wound care people involved thinking that they may be better equipped to deal with it than the regular floor staff. It may take a doctor's order, however, so we'll have to wait and see.
Anyhow, Estelle was unresponsive throughout the entire hospital stay and remained so even back at Woodbine. Her blood pressure was elevated and they were going to give her the tube meds as soon as possible. They said they did not have to sedate her during the procedure at all, either, as she never moved or made a sound or opened her eyes the entire time.
Her chin looks somewhat better and the bruise on her nose is healing. She was not hitting herself today - but then again, she was not awake, either. Angelica said she had a bad day yesterday with the arm movements but not at all so far today.
I am glad the tube is back in place and she can once again receive her nutrition and medications but I wish it could have been the newer version as I fear this one is destined to come out again. Hopefully, by the time it does, we will have cleared up the skin problem and the new one can finally be inserted.
The surgeon was very nice. He came out and explained to me why he could not insert the different type of tubing - he explained that he had actually tried but, because the tube will sit flush against her skin instead of having a tube which sticks out, he could not, in good conscience, leave it there due to the rawness of her skin. He said he was afraid that it would cause even more infection and no way to get to it to clear it up because there would be no room underneath the cap as there is now.
They put in a new tube of the old kind for now and spent almost an hour teaching me how to clear up the current infection so that they can insert the newer tube at a later date. It's a 5-step process involving sterile cleaning techniques, a special powder, liquid bandages, skin sealant, protective ointment and a special dressing usually intended for a trach tube but which works just fine for our purposes. I am hoping that the nursing home staff understands it and can keep up with it as it is time-consuming and complicated and needs to be done twice daily. I am going to try to get the wound care people involved thinking that they may be better equipped to deal with it than the regular floor staff. It may take a doctor's order, however, so we'll have to wait and see.
Anyhow, Estelle was unresponsive throughout the entire hospital stay and remained so even back at Woodbine. Her blood pressure was elevated and they were going to give her the tube meds as soon as possible. They said they did not have to sedate her during the procedure at all, either, as she never moved or made a sound or opened her eyes the entire time.
Her chin looks somewhat better and the bruise on her nose is healing. She was not hitting herself today - but then again, she was not awake, either. Angelica said she had a bad day yesterday with the arm movements but not at all so far today.
I am glad the tube is back in place and she can once again receive her nutrition and medications but I wish it could have been the newer version as I fear this one is destined to come out again. Hopefully, by the time it does, we will have cleared up the skin problem and the new one can finally be inserted.
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