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.
Wednesday, November 30, 2011
Evening, Tuesday, 11/29/11
We dropped in for about half an hour after Laura picked me up at the train station. We dropped off the softest gloves Laura could buy, and had a little visit. Mom's once again having very fluent conversations. When I gave her the cards that had arrived for Thanksgiving, she looked at them as if reading them; I don't think she was (her eyes did not seem to change focus at all, and when I checked for tracking, she did not track my finger moving -- although that may have nothing to do with the ability to focus close-up). Next time I'll check whether she tracks her image in a mirror, which is supposed to be more compelling.
She also stopped her compulsive movements for long enough to hold and look at the cards. So she can override the compulsive behavior for short periods of time if she has another purpose, although for this to be any real permanent cure, she would need a 24-hour misdirector of attention, and I don't think Chris Angel or David Copperfield do pro-bono work at that scale. But it might be a clue. Anyway, after a brief period, she took each card and began to use it to rub her chin once again, so I took the cards from her. She was very kind and pleasant to talk to again last night, as she almost always is when she's conversing fluently, although she showed more signs of deteriorating memory. I told her I'd be in this weekend, and she replied "Oh are you coming back this weekend?" When I said I visited every weekend, she said "Well of course you do." I don't think she remembered exactly who we were this visit.
As I said, a very brief note, as I am late to get in at a decent hour, and work is hopping at the moment. More this weekend.
D
She also stopped her compulsive movements for long enough to hold and look at the cards. So she can override the compulsive behavior for short periods of time if she has another purpose, although for this to be any real permanent cure, she would need a 24-hour misdirector of attention, and I don't think Chris Angel or David Copperfield do pro-bono work at that scale. But it might be a clue. Anyway, after a brief period, she took each card and began to use it to rub her chin once again, so I took the cards from her. She was very kind and pleasant to talk to again last night, as she almost always is when she's conversing fluently, although she showed more signs of deteriorating memory. I told her I'd be in this weekend, and she replied "Oh are you coming back this weekend?" When I said I visited every weekend, she said "Well of course you do." I don't think she remembered exactly who we were this visit.
As I said, a very brief note, as I am late to get in at a decent hour, and work is hopping at the moment. More this weekend.
D
Tuesday, November 29, 2011
Tuesday, November 28, 2011
Got a phone call from Woodbine at the ungodly hour of 6AM this morning. After scaring 8 years off my life it turned out that the night nurse wanted us to know that Estelle had worn a new opening in her chin and that they had applied an antibacterial ointment and a band aid.
I stopped in to visit after taking Dan to the train station and, sure enough, there is a nasty new open sore on her chin as well as an unsightly bruise on her nose. The nursing staff is at their wit's end and we are about to join them.
All the while I was there she continued to either pull at the band aid or rub it against her chin. If I hold her hand she fights it - which leads me to believe that she would absolutely hate having the arm restrained and that's about our only remaining option if we cannot find a drug which works. She was awake but not very communicative and I don't think she knew who I was. She did thank me for adjusting her gown and she did say that her chin hurt her when I asked but other than that there was not much asked or answered. She does appear agitated much more so than usual.
She has an appointment for the new tube to be put in on Thursday morning at 10AM. She has an IV in place for hydration and medication in the meantime. They are keeping her left arm wrapped in the blankets and with a pillow on top so she does not pull the IV out.
I spoke to the doctor yesterday and he ok'd the order for the new type of feeding tube but when I asked about the involuntary arm and hand movements he told me I needed to talk to the psychiatrist so I got that name and number today from the nurse and I am waiting for a call back from him.
Angelica suggested a soft glove - the mesh mitt did not work and an ordinary mitten did not work - the fabric is rough and when she rubs it does as much, if not more, damage to her skin than her hand does. I stopped at the store and picked up two different types of glove. One a soft fleece and one soft leather. I tried rubbing them both against my skin and did not create much friction with either of them so, hopefully, one of them might work until we can find a drug or a dosage which does the trick.
Wish the news was better. Right now it seems everyone is miserable - Estelle most of all.
I stopped in to visit after taking Dan to the train station and, sure enough, there is a nasty new open sore on her chin as well as an unsightly bruise on her nose. The nursing staff is at their wit's end and we are about to join them.
All the while I was there she continued to either pull at the band aid or rub it against her chin. If I hold her hand she fights it - which leads me to believe that she would absolutely hate having the arm restrained and that's about our only remaining option if we cannot find a drug which works. She was awake but not very communicative and I don't think she knew who I was. She did thank me for adjusting her gown and she did say that her chin hurt her when I asked but other than that there was not much asked or answered. She does appear agitated much more so than usual.
She has an appointment for the new tube to be put in on Thursday morning at 10AM. She has an IV in place for hydration and medication in the meantime. They are keeping her left arm wrapped in the blankets and with a pillow on top so she does not pull the IV out.
I spoke to the doctor yesterday and he ok'd the order for the new type of feeding tube but when I asked about the involuntary arm and hand movements he told me I needed to talk to the psychiatrist so I got that name and number today from the nurse and I am waiting for a call back from him.
Angelica suggested a soft glove - the mesh mitt did not work and an ordinary mitten did not work - the fabric is rough and when she rubs it does as much, if not more, damage to her skin than her hand does. I stopped at the store and picked up two different types of glove. One a soft fleece and one soft leather. I tried rubbing them both against my skin and did not create much friction with either of them so, hopefully, one of them might work until we can find a drug or a dosage which does the trick.
Wish the news was better. Right now it seems everyone is miserable - Estelle most of all.
Monday, November 28, 2011
Monday, November 28, 2011
Arghhhh!!! The tube fell out again this morning. It doesn't appear to have been pulled out, this time the balloon failed, but the end result is the same. Estelle needs another IV and another trip to the hospital for replacement.
I am awaiting a call from her doctor. We'd like to have a different sort of tube put in this time but it needs a physician order and we are unsure if this doctor likes the different tube or if there is some medical reason why it would be contraindicated in Estelle's particular case.
Either way, we are waiting for an appointment at the day-surgery department at the hospital.
Otherwise, all else remains the same. She is still alert and she is still suffering repetitive and random arm and hand movements.
I will be discussing that with the doctor, as well.
I am awaiting a call from her doctor. We'd like to have a different sort of tube put in this time but it needs a physician order and we are unsure if this doctor likes the different tube or if there is some medical reason why it would be contraindicated in Estelle's particular case.
Either way, we are waiting for an appointment at the day-surgery department at the hospital.
Otherwise, all else remains the same. She is still alert and she is still suffering repetitive and random arm and hand movements.
I will be discussing that with the doctor, as well.
Sunday, November 27, 2011
Sunday, November 27, 2011
More dispatches from the "I don't know which is worse" front, I'm afraid. Mom was uncommunicative on Thursday. Today she was talking, and mainly making sense, although she abruptly changed the topic of conversation a few times. For instance, she asked again where I work, I told her again, and she said "You must like dogs then." As many of you know, my work has nothing to do with dogs. But no big deal -- we talked about dogs for a few minutes.
The reason I put the talkative spell in the "I don't know which is worse" category, is that when she's talkative, her arm's compulsively moving; when she's not, it isn't. In any event, Zoloft is supposed to be great for these behaviors, and that's what they're trying now.
At the moment, however, she's back to compulsively whacking and rubbing her chin with her hand, which is now stuffed into a sock (several socks actually -- it's quite well-padded.) The nursing home called this morning to mention that she'd bruised the bridge of her nose. She indeed has, so I certainly have no issue with padding her hand. (Last week she had worn a hole in her chin and picked an open sore in her upper lip -- both of which seem to be healing.)
While we talked, I asked her to track my finger movement (she couldn't.) I asked her a few questions about whether she could stop her arm from moving. She said she couldn't, even when I asked if she could stop for just one second.
I didn't think to ask her to squeeze my hand, which she has been able to do most times that she is talking. However, last week, I asked her if I could hold her hand, and she liked that -- yet kept trying to jerk both our hands toward her face.
Today I asked if I held her hand down whether it bothered her (still trying to figure out if there was any volitional component to the compulsive movements.) She said "They try to do that all the time." I started out with a next thought: "If I did..." -- but she interrupted me: "Don't." Well, her hand is pretty well padded at the moment; me holding it down for an hour or two would at best be a stopgap measure, so I let it go. But it's interesting that she doesn't want the involuntary, compulsive behavior interfered with.
Today, she expressed things she had not for a long time: she wanted an apple. Her back hurt. When I explained she was getting her food through the tube, she opined "yes, but I don't like the tube." I bring it up because most days she has absolutely no complaints of any kind. Maybe in a way it's a good sign -- just not one we can do a damn thing about. More "I don't know which is worse."
Of course the back pain is a much simpler matter. I requested something for breakthrough pain from the charge nurse. Before that arrived, I moved around her pillows in her chair, which seemed helpful. The pain was probably from being slumped in the chair all afternoon. In any event, before any drug arrived, her aide came in and asked Mom when she would like to get in bed. Mom said "as soon as possible," so I left the room while the aide went to get the winch they use to transfer her from bed to chair and back again.
She was much more comfortable once in bed. Since I stepped outside for a few minutes, I don't know whether her nurse had also come around with something for breakthrough pain, or whether it was just a result of getting out of the chair and back in bed, but she was just drowsy when I returned, not complaining of any pain.
When the nurse's aide got her into bed, she also arranged her arm beneath a pillow tucked under the sheet, which effectively arrested her arm's motion.
Here's hoping that the Zoloft works, or some other drug that works on compulsive behaviors.
D
The reason I put the talkative spell in the "I don't know which is worse" category, is that when she's talkative, her arm's compulsively moving; when she's not, it isn't. In any event, Zoloft is supposed to be great for these behaviors, and that's what they're trying now.
At the moment, however, she's back to compulsively whacking and rubbing her chin with her hand, which is now stuffed into a sock (several socks actually -- it's quite well-padded.) The nursing home called this morning to mention that she'd bruised the bridge of her nose. She indeed has, so I certainly have no issue with padding her hand. (Last week she had worn a hole in her chin and picked an open sore in her upper lip -- both of which seem to be healing.)
While we talked, I asked her to track my finger movement (she couldn't.) I asked her a few questions about whether she could stop her arm from moving. She said she couldn't, even when I asked if she could stop for just one second.
I didn't think to ask her to squeeze my hand, which she has been able to do most times that she is talking. However, last week, I asked her if I could hold her hand, and she liked that -- yet kept trying to jerk both our hands toward her face.
Today I asked if I held her hand down whether it bothered her (still trying to figure out if there was any volitional component to the compulsive movements.) She said "They try to do that all the time." I started out with a next thought: "If I did..." -- but she interrupted me: "Don't." Well, her hand is pretty well padded at the moment; me holding it down for an hour or two would at best be a stopgap measure, so I let it go. But it's interesting that she doesn't want the involuntary, compulsive behavior interfered with.
Today, she expressed things she had not for a long time: she wanted an apple. Her back hurt. When I explained she was getting her food through the tube, she opined "yes, but I don't like the tube." I bring it up because most days she has absolutely no complaints of any kind. Maybe in a way it's a good sign -- just not one we can do a damn thing about. More "I don't know which is worse."
Of course the back pain is a much simpler matter. I requested something for breakthrough pain from the charge nurse. Before that arrived, I moved around her pillows in her chair, which seemed helpful. The pain was probably from being slumped in the chair all afternoon. In any event, before any drug arrived, her aide came in and asked Mom when she would like to get in bed. Mom said "as soon as possible," so I left the room while the aide went to get the winch they use to transfer her from bed to chair and back again.
She was much more comfortable once in bed. Since I stepped outside for a few minutes, I don't know whether her nurse had also come around with something for breakthrough pain, or whether it was just a result of getting out of the chair and back in bed, but she was just drowsy when I returned, not complaining of any pain.
When the nurse's aide got her into bed, she also arranged her arm beneath a pillow tucked under the sheet, which effectively arrested her arm's motion.
Here's hoping that the Zoloft works, or some other drug that works on compulsive behaviors.
D
Saturday, November 26, 2011
Nov. 24, 2011 Thanksgiving Late
Sorry for the delay. Dan thought I was writing it, I thought Dan was writing it - and it didn't get written. I blame tryptophan overload.
Anyhow......hope all who celebrate Thanksgiving had a happy one. We overstuffed ourselves and there's no end of turkey leftovers and stale dressing still in sight.
The new medication seems to be working - as of Thursday's visit Estelle seems to have quit fixating on her face and chin and she is no longer picking and rubbing at it. The raw spots are healing up nicely already. That's all to the good, of course.
To the bad, since there is always a bad to accompany the good, she is also fairly unresponsive. She said a few words and spoke briefly on the phone to Viv but mostly she is very lethargic once again. Hopefully it is a side effect of the medication which will wear off as her system gets used to it. If it does not resolve we will speak to the doctors about lowering the dosage if at all possible. From what I understand, however, she is already on the lowest customary dosage.
Some days it feels like walking a tightrope. Too much and this happens, too little and that happens. We try to keep her as alert as possible but it always has to be weighed against pain, discomfort and the possibility of hurting herself. There are always trade-offs and most of them are hard ones to decide upon.
For now, we are glad she is no longer agitated and causing herself injury - but we are sad that she is, once again, lethargic and non-communicative. Brains and bodies take awhile to adjust to medications, however, so hopefully this, too, shall pass and we will get back an Estelle who is able to enjoy small things, to understand bits of conversation and who does not suffer from uncontrollable and repetitive arm and hand movements.
We'll be visiting again this afternoon and one of us will be back to offer an update.
Anyhow......hope all who celebrate Thanksgiving had a happy one. We overstuffed ourselves and there's no end of turkey leftovers and stale dressing still in sight.
The new medication seems to be working - as of Thursday's visit Estelle seems to have quit fixating on her face and chin and she is no longer picking and rubbing at it. The raw spots are healing up nicely already. That's all to the good, of course.
To the bad, since there is always a bad to accompany the good, she is also fairly unresponsive. She said a few words and spoke briefly on the phone to Viv but mostly she is very lethargic once again. Hopefully it is a side effect of the medication which will wear off as her system gets used to it. If it does not resolve we will speak to the doctors about lowering the dosage if at all possible. From what I understand, however, she is already on the lowest customary dosage.
Some days it feels like walking a tightrope. Too much and this happens, too little and that happens. We try to keep her as alert as possible but it always has to be weighed against pain, discomfort and the possibility of hurting herself. There are always trade-offs and most of them are hard ones to decide upon.
For now, we are glad she is no longer agitated and causing herself injury - but we are sad that she is, once again, lethargic and non-communicative. Brains and bodies take awhile to adjust to medications, however, so hopefully this, too, shall pass and we will get back an Estelle who is able to enjoy small things, to understand bits of conversation and who does not suffer from uncontrollable and repetitive arm and hand movements.
We'll be visiting again this afternoon and one of us will be back to offer an update.
Monday, November 21, 2011
Sunday, November 20, 2011
Exciting day! Mark and Lea were in for a surprise visit with Estelle.
Unfortunately, Estelle was not having one of her better days and while she was somewhat responsivem recognized them and was very glad to see them, she wasn't really in a conversational mood.
Dan and I visited with them in Estelle's room for an hour or two in the early afternoon and, when Mom tired out, we all left. Mark and Lea returned later in the day and visited with her on their own for awhile.
It's really nice to have family around and it was great to see Mark and Lea again. Lea just gets prettier and prettier and more and more grown-up looking.
Estelle did talk to Viv a bit before they arrived, too, so she got to talk to her entire family.
On a more routine note, she had a consult with a specialist today (Monday) to try to find out why she keeps rubbing her face so much. It's become really noticable lately and she's worn the skin off of her chin and opened a cut on her upper lip. The "mitten" didn't work because she simply rubbed with the mesh and it made it even worse.
The doctor seems to think it's totally involuntary and has become simply a compulsive behaviour and he's ordered a small dose of Zoloft daily. Zoloft has shown good results in the lessening of obsessive-compulsive motor movements so, hopefully, it will take hold quickly and this latest problem will resolve soon.
Unfortunately, Estelle was not having one of her better days and while she was somewhat responsivem recognized them and was very glad to see them, she wasn't really in a conversational mood.
Dan and I visited with them in Estelle's room for an hour or two in the early afternoon and, when Mom tired out, we all left. Mark and Lea returned later in the day and visited with her on their own for awhile.
It's really nice to have family around and it was great to see Mark and Lea again. Lea just gets prettier and prettier and more and more grown-up looking.
Estelle did talk to Viv a bit before they arrived, too, so she got to talk to her entire family.
On a more routine note, she had a consult with a specialist today (Monday) to try to find out why she keeps rubbing her face so much. It's become really noticable lately and she's worn the skin off of her chin and opened a cut on her upper lip. The "mitten" didn't work because she simply rubbed with the mesh and it made it even worse.
The doctor seems to think it's totally involuntary and has become simply a compulsive behaviour and he's ordered a small dose of Zoloft daily. Zoloft has shown good results in the lessening of obsessive-compulsive motor movements so, hopefully, it will take hold quickly and this latest problem will resolve soon.
Saturday, November 19, 2011
Saturday, 11/19/11
Laura and I stopped in yesterday very briefly. Mom is still speaking clearly, and without as many momentary delays in her speech. Her right hand constantly moves around her chin and mouth, a problem I think I've mentioned before. The motion is certainly not completely voluntary. Mom says it is a "nervous habit." If you ask her if her chin hurts or itches she says "it doesn't really hurt," but she picks at it, and at her upper lip, constantly.
We had a mitten restraint on her for a while, but the back of the mitten is a plastic mesh, and she was using that to rub at her face as well, so it's removed. Laura filed down her nails yesterday during our visit.
Today I visited with her again today, and at first, I let her use her wandering right hand to hold the phone. She tried for a little while, but was waving it about rather than holding it still, and eventually inadvertently turned off the speaker function. She was also trying to use it, as she tries to use any object, to whack herself in the chin. So this experiment was short-lived. We've requested a psych consult, hoping that they have some insights on such repetitive motions.
She wasn't very talkative today, not like yesterday. I read her a couple of letters that had come in, and we made a few phone calls, but our conversation was a little on the scant side. I played some for her, and when I stopped (thinking I'd put the guitar away,) she asked why I stopped. So I just played today more than anything, between instinctive and foolish attempts to explain to her that she really should stop picking at her face. It's silly to try to explain, but on the other hand, it's hard not to. You give her the old stern voice, you give her the cajoling tone, it doesn't matter. She's not completely aware she's doing it at all.
In any event, she didn't seem to be in bad spirits, just... what should I say? Fidgety.
Mark called tonight, and he and Lea will be visiting with us tomorrow -- it should be a pleasant surprise for Mom.
D
We had a mitten restraint on her for a while, but the back of the mitten is a plastic mesh, and she was using that to rub at her face as well, so it's removed. Laura filed down her nails yesterday during our visit.
Today I visited with her again today, and at first, I let her use her wandering right hand to hold the phone. She tried for a little while, but was waving it about rather than holding it still, and eventually inadvertently turned off the speaker function. She was also trying to use it, as she tries to use any object, to whack herself in the chin. So this experiment was short-lived. We've requested a psych consult, hoping that they have some insights on such repetitive motions.
She wasn't very talkative today, not like yesterday. I read her a couple of letters that had come in, and we made a few phone calls, but our conversation was a little on the scant side. I played some for her, and when I stopped (thinking I'd put the guitar away,) she asked why I stopped. So I just played today more than anything, between instinctive and foolish attempts to explain to her that she really should stop picking at her face. It's silly to try to explain, but on the other hand, it's hard not to. You give her the old stern voice, you give her the cajoling tone, it doesn't matter. She's not completely aware she's doing it at all.
In any event, she didn't seem to be in bad spirits, just... what should I say? Fidgety.
Mark called tonight, and he and Lea will be visiting with us tomorrow -- it should be a pleasant surprise for Mom.
D
Monday, November 14, 2011
Sunday, 11-13-11
Well, WOW!! Just plain WOW!!
Dan and I went to visit Estelle yesterday around 10:30AM - when we got there the nurses were getting her dressed and in the chair so we cooled our heels in the waiting room for a bit and then finally got to see her.
We walked into the room and Dan said, "Hi, Mom, it's Dan," and she looked right at him, smiled and said, "I know that." I think it's the first time since she had the stroke that I've seen real animation on her face and it was wonderful to see. Dan motioned to me and said, "Laura's with me. You remember Laura, don't you? She's my wife." (She's not recognized me for months now) She turned her head to look at me (again, not something she's been doing) and she said, "Of course I know her. You've been married a long time now and you're my family. She's looking very beautiful today."
Her face was clear, her eyes were clear and her voice was as strong and as clear as I've ever heard it be. It was absolutely astounding. She told us about the nurses getting her dressed and in the chair and said she wasn't quite sure who they were but that they were very helpful. She asked about my grandchildren and spent at least 10 minutes telling us about the importance of family and how she liked being a part of her own family and she wanted to know who was "around" her. She spoke of Meryl and told us how she was her greatest friend in "the world" and about Meryl's family and, especially, her grandson, Rafi. She knew where he went to school and how often he'd seen her own grandchildren and shared a whole plethora of past and current information.
Dan called Viv and she got to talk to Viv for a while. I'm hoping Viv understood most of what she was saying because it was such a treat to hear her speak so positively and so clearheadedly. Her voice is still sometimes difficult to hear - she speaks very low and I'm afraid that on a phone it becomes lost sometimes. She was asked about Thanksgiving and talking about cupcakes and birthdays and families to Viv as well as to Dan and I.
Once off the phone she continued to speak of family. She told Dan how glad she was tht he was part of her family and that she was happy where she was living and glad that he came to see her frequently. She looked at me (sounds like a small thing, but Dan and I were sitting on opposite sides of her and, in the past, she has never deliberately moved her head from one side to the other in order to look at the person speaking or being spoken to) and said, "You're here all the time, aren't you," and she laughed.
She then pointedly asked Dan when he was going to start playing his guitar. He explained that he had not brought it in with him because I was there and she said, "Well, I'm sure she can listen, too." He asked me if I'd like him to take me home and he'd come back later and she interrupted and said, "She'll stay. There's no reason anyone has to leave right now."
Needless to say, he went to the car and got the guitar. As he was tuning it she started talking about the piano they used to have and how she liked music in the house and, once again, talked about how much she loved her family and how nice it was to talk to them and see them. We tried calling Mark for her, but he was not home.
Usually when Dan plays guitar she is silent but this time she was full of questions as to the name of the song and who sang it and why wasn't Danny singing the words. He sang for her and she then questioned what on earth the song was about, anyhow. It was a Bob Dylan song, so who the heck really knows???
We stayed about 3 hours and she was visibly tiring towards the end but that's ok, too. It's good to be tired from something instead of being tired of nothing.
Anyhow, it was a great visit. We're not sure what's going on or why the sudden radical change in mental status, but we'll take it, humbly gratefully and modestly hopeful.
Dan and I went to visit Estelle yesterday around 10:30AM - when we got there the nurses were getting her dressed and in the chair so we cooled our heels in the waiting room for a bit and then finally got to see her.
We walked into the room and Dan said, "Hi, Mom, it's Dan," and she looked right at him, smiled and said, "I know that." I think it's the first time since she had the stroke that I've seen real animation on her face and it was wonderful to see. Dan motioned to me and said, "Laura's with me. You remember Laura, don't you? She's my wife." (She's not recognized me for months now) She turned her head to look at me (again, not something she's been doing) and she said, "Of course I know her. You've been married a long time now and you're my family. She's looking very beautiful today."
Her face was clear, her eyes were clear and her voice was as strong and as clear as I've ever heard it be. It was absolutely astounding. She told us about the nurses getting her dressed and in the chair and said she wasn't quite sure who they were but that they were very helpful. She asked about my grandchildren and spent at least 10 minutes telling us about the importance of family and how she liked being a part of her own family and she wanted to know who was "around" her. She spoke of Meryl and told us how she was her greatest friend in "the world" and about Meryl's family and, especially, her grandson, Rafi. She knew where he went to school and how often he'd seen her own grandchildren and shared a whole plethora of past and current information.
Dan called Viv and she got to talk to Viv for a while. I'm hoping Viv understood most of what she was saying because it was such a treat to hear her speak so positively and so clearheadedly. Her voice is still sometimes difficult to hear - she speaks very low and I'm afraid that on a phone it becomes lost sometimes. She was asked about Thanksgiving and talking about cupcakes and birthdays and families to Viv as well as to Dan and I.
Once off the phone she continued to speak of family. She told Dan how glad she was tht he was part of her family and that she was happy where she was living and glad that he came to see her frequently. She looked at me (sounds like a small thing, but Dan and I were sitting on opposite sides of her and, in the past, she has never deliberately moved her head from one side to the other in order to look at the person speaking or being spoken to) and said, "You're here all the time, aren't you," and she laughed.
She then pointedly asked Dan when he was going to start playing his guitar. He explained that he had not brought it in with him because I was there and she said, "Well, I'm sure she can listen, too." He asked me if I'd like him to take me home and he'd come back later and she interrupted and said, "She'll stay. There's no reason anyone has to leave right now."
Needless to say, he went to the car and got the guitar. As he was tuning it she started talking about the piano they used to have and how she liked music in the house and, once again, talked about how much she loved her family and how nice it was to talk to them and see them. We tried calling Mark for her, but he was not home.
Usually when Dan plays guitar she is silent but this time she was full of questions as to the name of the song and who sang it and why wasn't Danny singing the words. He sang for her and she then questioned what on earth the song was about, anyhow. It was a Bob Dylan song, so who the heck really knows???
We stayed about 3 hours and she was visibly tiring towards the end but that's ok, too. It's good to be tired from something instead of being tired of nothing.
Anyhow, it was a great visit. We're not sure what's going on or why the sudden radical change in mental status, but we'll take it, humbly gratefully and modestly hopeful.
Saturday, November 12, 2011
Saturday 11/12/11
Once again, another course of antibiotics, and another infection down. Mom's clear-minded and talking again. "Back to her old self," as one of her nurses promised last weekend. Well, maybe not quite back to her old self -- but back to her old self before this particular infection.
Mom spoke to some friends and relatives today on the phone. With me, she talked about being lonely in the home, and wanting to live "in a normal house." I explained a few times that the level of care she needed made that impossible, but she's not having any of it. In any event she was very clear-minded, and she is also appreciative of our visits, and everyone's calls. She just hates where she ended up, in a very general way: she doesn't want to live in a nursing home. Of course she does not place much stock in the many details of her care. She wants what she wants, and there's nothing for that, but she's also glad that I'll be coming back in the morning. She's clear-minded enough that she pressed me for a time, and I told her mid-morning.
I encouraged her to talk with the staff and with her roommate as much as she could. I don't think she can keep pace with other residents. It's a pity nobody knows her from before the stroke. We all have so little patience with one another, that I know instinctively that it's a long shot that she'll be able to form relationships with other residents. I've tried to introduce her to her roommate, but not successfully. People want the next line in a conversation in what they consider a reasonable timeframe, whether or not they understand one another or see eye-to-eye. I think her roommate is just plain afraid of her.
But the staff at Woodbine did make note that she's been talking much more again, and are quite patient. I saw her interact with one nurse - but it's not like having friends there and being a real part of the community. I hope she does get some relief from the tedium of the days with the staff. I tell her that her nurses are happy to turn on her television for her, in which she showed absolutely no interest. She only wants to live in a normal house.
So would I.
I tell her "You live here now." Insofar as she stays lucid, I think it's the best way to approach it, rather than tell her tall tales about a miraculous recovery. My miracle is she talks, asks me to play songs, jokes and laughs when she is in a good mood, and is "there" once again, for whatever length of time she stays lucid before the next infection.
We'll get together again tomorrow morning, and with luck, she'll be in a more accepting state of mind.
Mom spoke to some friends and relatives today on the phone. With me, she talked about being lonely in the home, and wanting to live "in a normal house." I explained a few times that the level of care she needed made that impossible, but she's not having any of it. In any event she was very clear-minded, and she is also appreciative of our visits, and everyone's calls. She just hates where she ended up, in a very general way: she doesn't want to live in a nursing home. Of course she does not place much stock in the many details of her care. She wants what she wants, and there's nothing for that, but she's also glad that I'll be coming back in the morning. She's clear-minded enough that she pressed me for a time, and I told her mid-morning.
I encouraged her to talk with the staff and with her roommate as much as she could. I don't think she can keep pace with other residents. It's a pity nobody knows her from before the stroke. We all have so little patience with one another, that I know instinctively that it's a long shot that she'll be able to form relationships with other residents. I've tried to introduce her to her roommate, but not successfully. People want the next line in a conversation in what they consider a reasonable timeframe, whether or not they understand one another or see eye-to-eye. I think her roommate is just plain afraid of her.
But the staff at Woodbine did make note that she's been talking much more again, and are quite patient. I saw her interact with one nurse - but it's not like having friends there and being a real part of the community. I hope she does get some relief from the tedium of the days with the staff. I tell her that her nurses are happy to turn on her television for her, in which she showed absolutely no interest. She only wants to live in a normal house.
So would I.
I tell her "You live here now." Insofar as she stays lucid, I think it's the best way to approach it, rather than tell her tall tales about a miraculous recovery. My miracle is she talks, asks me to play songs, jokes and laughs when she is in a good mood, and is "there" once again, for whatever length of time she stays lucid before the next infection.
We'll get together again tomorrow morning, and with luck, she'll be in a more accepting state of mind.
Tuesday, November 8, 2011
Tuesday, November 8, 2011
Well that went quickly!
Too quickly, in a way.
I had spent a good deal of time talking to Teena yesteday about Estelle's tube. She is as frustrated as we are with the current situation. I had mentioned to her that the surgeon at the hospital had brought up a "button" tube which he felt might work better because it does not stick out and there is no tube attached. He did not want to put one in Estelle at that time, however, for two reasons: !)The site needed to be clean, i.e. not infected, and 2) he was unsure the nursing home would be familiar with them.
Teena assured me that they are familiar with them and that she thought it would be a great idea to try. She feels that the tube is simply in a "wrong" place (it is in the folds of her skin and, because of that, it is never exposed to air and gets caught whenever she is moved.) She said if Estelle was stronger she'd even go so far as to recommend a new total surgery to change the site but she thinks Mom is too fragile to withstand such an ordeal at this time.
I called Dan and talked it over with him and the three of us decided that we'd ask the doctor to put in a button tube this time around if at all possible. Because I cannot sign for that kind of change, Dan arranged to take a few hours off this morning to go with me to the hospital.
We got there at 8:45 (procedure was scheduled for between 9 and 9:30) only to find that she was already in the OR room. The nurse ran in to try to make our wishes known but, as it turned out, they could not do it today as they did not have the right size internal tubing on hand. They did say they would order it, however, and that, if the tube falls out again, they will have everything they need to make the switch.
The insertion went well and by the time they called us out of the waiting room Estelle was already on the ambulance stretcher and ready to go home.
Good news, however, she was awake and alert again. She seemed to recognize us and said,"Hello, Good Morning," and answered a few questions.
Because Dan is so under-the-gun at work we did not go back to the nursing home with her and I took Dan to the train station instead.
So, once again, the antibiotics seem to be working their magic and Estelle is no longer agitated, restless or lethargic.
All in all, a good day. I wish we could have changed the tube type but at least we know that if it falls out again we can take care of it.
Too quickly, in a way.
I had spent a good deal of time talking to Teena yesteday about Estelle's tube. She is as frustrated as we are with the current situation. I had mentioned to her that the surgeon at the hospital had brought up a "button" tube which he felt might work better because it does not stick out and there is no tube attached. He did not want to put one in Estelle at that time, however, for two reasons: !)The site needed to be clean, i.e. not infected, and 2) he was unsure the nursing home would be familiar with them.
Teena assured me that they are familiar with them and that she thought it would be a great idea to try. She feels that the tube is simply in a "wrong" place (it is in the folds of her skin and, because of that, it is never exposed to air and gets caught whenever she is moved.) She said if Estelle was stronger she'd even go so far as to recommend a new total surgery to change the site but she thinks Mom is too fragile to withstand such an ordeal at this time.
I called Dan and talked it over with him and the three of us decided that we'd ask the doctor to put in a button tube this time around if at all possible. Because I cannot sign for that kind of change, Dan arranged to take a few hours off this morning to go with me to the hospital.
We got there at 8:45 (procedure was scheduled for between 9 and 9:30) only to find that she was already in the OR room. The nurse ran in to try to make our wishes known but, as it turned out, they could not do it today as they did not have the right size internal tubing on hand. They did say they would order it, however, and that, if the tube falls out again, they will have everything they need to make the switch.
The insertion went well and by the time they called us out of the waiting room Estelle was already on the ambulance stretcher and ready to go home.
Good news, however, she was awake and alert again. She seemed to recognize us and said,"Hello, Good Morning," and answered a few questions.
Because Dan is so under-the-gun at work we did not go back to the nursing home with her and I took Dan to the train station instead.
So, once again, the antibiotics seem to be working their magic and Estelle is no longer agitated, restless or lethargic.
All in all, a good day. I wish we could have changed the tube type but at least we know that if it falls out again we can take care of it.
Monday, November 7, 2011
Monday, November 7, 2011
Just a quick update. Talked to Teena, the nursing supervisor, just now. The surgery to replace the tube will take place tomorrow morning at 9AM. Estelle is currently getting her fluids and medication through an IV and is doing as well as can be expected.
Sunday, November 6, 2011
Sunday, November 6. 2011
Laura here, again. Dan's still snowed under at work so I'm trying to pick up the slack.
We visited Estelle together yesterday and found her to be still quite agitated. She barely acknowledged us and did nothing but mover her right arm around and pick at whatever got in the way. She was not talking and looked to be uncomfortable and unhappy. The antibiotic was started yesterday so it's still too soon to tell if it's going to make a difference.
I visited on my own early this morning. She was much quieter - when I arrived she had her eyes open but when I spoke to her and told her who I was and that Dan was working she simply turned her head, closed her eyes and fell asleep. I tried waking her a few times but without success so I tidied up her mail and pictures and simply sat at her bedside for an hour or so. The nurse came in with the new mitten and put that on her and she did not wake up during the process. They were going to wash her up and get her in a chair but I asked that they did not get her out of bed today because yesterday had been so rough for her and she was finally looking somewhat peacable just lying in bed. Angelica agreed with me and they were going to allow her to remain in bed for the day.
Unfortunately, after having been home for less than 2 hours, Angelica called to inform us that her feeding tube has, once again, fallen completely out. Angelica was not sure when, exactly, this happened. It's been infected and it's been loose (as always) and she has been incessantly picking at it and, apparently, when Angelica went to give her a dose of her antibiotic it was totally out. The balloon was still full so, unless a nurse accidently pulled it out and is not saying so, she probably pulled it out sometimes before the mitten was put on.
The doctor has been notified and an order given for an IV to be started for hydration and medication and they will call the surgery department at the hospital tomorrow morning and make an appointment to have it reinserted.
Once again, we wish the news were better.
We visited Estelle together yesterday and found her to be still quite agitated. She barely acknowledged us and did nothing but mover her right arm around and pick at whatever got in the way. She was not talking and looked to be uncomfortable and unhappy. The antibiotic was started yesterday so it's still too soon to tell if it's going to make a difference.
I visited on my own early this morning. She was much quieter - when I arrived she had her eyes open but when I spoke to her and told her who I was and that Dan was working she simply turned her head, closed her eyes and fell asleep. I tried waking her a few times but without success so I tidied up her mail and pictures and simply sat at her bedside for an hour or so. The nurse came in with the new mitten and put that on her and she did not wake up during the process. They were going to wash her up and get her in a chair but I asked that they did not get her out of bed today because yesterday had been so rough for her and she was finally looking somewhat peacable just lying in bed. Angelica agreed with me and they were going to allow her to remain in bed for the day.
Unfortunately, after having been home for less than 2 hours, Angelica called to inform us that her feeding tube has, once again, fallen completely out. Angelica was not sure when, exactly, this happened. It's been infected and it's been loose (as always) and she has been incessantly picking at it and, apparently, when Angelica went to give her a dose of her antibiotic it was totally out. The balloon was still full so, unless a nurse accidently pulled it out and is not saying so, she probably pulled it out sometimes before the mitten was put on.
The doctor has been notified and an order given for an IV to be started for hydration and medication and they will call the surgery department at the hospital tomorrow morning and make an appointment to have it reinserted.
Once again, we wish the news were better.
Friday, November 4, 2011
Friday, November 4. 2011
The doctor was in to see Estelle this morning and the results from the urine culture were back. She is being started on Ceftin as that is the drug this particular bacteria is most susceptible to.
Her agitation seems to have decreased some but she is still trying to scratch herself almost constantly.
Hopefully a few doses of antibiotics and that will subside and her lethergy will decrease as well.
It would be good to get her outside one more time before the winter sets in. It has warmed back up here and the fall colors are still beautiful in spite of our recent snowfall.
Her agitation seems to have decreased some but she is still trying to scratch herself almost constantly.
Hopefully a few doses of antibiotics and that will subside and her lethergy will decrease as well.
It would be good to get her outside one more time before the winter sets in. It has warmed back up here and the fall colors are still beautiful in spite of our recent snowfall.
Monday, October 31, 2011
Monday, October 31, 2011
Laura here. Dan's super-busy at work this month so I told him I would fill everyone in on the weekend past.
We visited early on Saturday morning and found Estelle to be quite agitated. She's been picking at her arm for awhile but on Saturday she'd moved to her facial area and was continuely rubbing and striking herself in the chin and mouth area. She'd managed to rub her chin almost raw with the center portion of her hand splint. We talked to the nurse immediately and she called the doctor while we were there to see if there was anything we could do to prevent this. Dan and I tried applying lotion and neosporin to her chin and arm because she had replied "yes" when Dan asked her if something was itching her but it was to no avail. She replied "yes," to anything we asked her....did it hurt, did it itch, did it sting? It was impossible to tell what was going on - if anything. The movements seem randomless - her arm goes places and whereever it lands that's what gets picked at.
We again asked that a urinalysis be done because she's not normally this agitated unless she's got an infection and the nurse was getting permission from the doctor to run one. (UPDATE) I just spoke to Angelica, Estelle's weekday nurse, and she got the result back today - and yes, she does have an infection - Strep B, this time, and they are running a culture and sensitivity as I type this to find out what antibiotic is needed. Medication will start as soon as they have the results.)
Dan visited alone on Sunday and said she was a bit more talkative than she was on Saturday but still agitated. I believe she talked to Viv for a bit on the phone. Dan said Estelle was answering some of his questions but that she wasn't as alert as she has been before last Thursday when I was there for her care plan meeting and first noticed that she'd become lethargic again. Again, now that we know she's got another UTI that probably explains both the mental lethargy and the increased physical agitation.
Angelica also said that the had cultured her feeding tube site due to increased leakage and it, too, is infected but seemingly only on the surface. They are currently treating that with a topical antibiotic and a sterile dressing.
We discussed various means of preventing her from hurting herself (the arm scratches, the chin bruising and reddening - and Angelica also said that she's trying to prevent them from taking care of the tube site and hooking up the feedings.) The hand splints are becoming more of a hinderance than a help at this point, they have a solid core which fits in the palm of her hand and she is using that solid part to rub and hit with. I remembered there were mittens that we sometimes used in the ER and mentioned them to the nurse and she said that they do occasionally use them and that would be a good solution. It would not restrain her arm (we don't want to restrict her movement if we can avoid it - it's good to know she's using the arm at all - we just don't want her to injure herself in the process) and yet it would do away with the ability to scratch herself raw or to hit herself with the splint. She could still rub, which may be a problem, but it won't be as bad of a problem. Hopefully once she gets a few doses of antibiotics the agitation will disappear and it will be a moot point.
Anyhow - a setback and disappointing but we're glad they've quickly diagnosed the problem and are hopeful that it will not take long to clear up the infections and Estelle will be back to where she was 2 weeks ago.
We visited early on Saturday morning and found Estelle to be quite agitated. She's been picking at her arm for awhile but on Saturday she'd moved to her facial area and was continuely rubbing and striking herself in the chin and mouth area. She'd managed to rub her chin almost raw with the center portion of her hand splint. We talked to the nurse immediately and she called the doctor while we were there to see if there was anything we could do to prevent this. Dan and I tried applying lotion and neosporin to her chin and arm because she had replied "yes" when Dan asked her if something was itching her but it was to no avail. She replied "yes," to anything we asked her....did it hurt, did it itch, did it sting? It was impossible to tell what was going on - if anything. The movements seem randomless - her arm goes places and whereever it lands that's what gets picked at.
We again asked that a urinalysis be done because she's not normally this agitated unless she's got an infection and the nurse was getting permission from the doctor to run one. (UPDATE) I just spoke to Angelica, Estelle's weekday nurse, and she got the result back today - and yes, she does have an infection - Strep B, this time, and they are running a culture and sensitivity as I type this to find out what antibiotic is needed. Medication will start as soon as they have the results.)
Dan visited alone on Sunday and said she was a bit more talkative than she was on Saturday but still agitated. I believe she talked to Viv for a bit on the phone. Dan said Estelle was answering some of his questions but that she wasn't as alert as she has been before last Thursday when I was there for her care plan meeting and first noticed that she'd become lethargic again. Again, now that we know she's got another UTI that probably explains both the mental lethargy and the increased physical agitation.
Angelica also said that the had cultured her feeding tube site due to increased leakage and it, too, is infected but seemingly only on the surface. They are currently treating that with a topical antibiotic and a sterile dressing.
We discussed various means of preventing her from hurting herself (the arm scratches, the chin bruising and reddening - and Angelica also said that she's trying to prevent them from taking care of the tube site and hooking up the feedings.) The hand splints are becoming more of a hinderance than a help at this point, they have a solid core which fits in the palm of her hand and she is using that solid part to rub and hit with. I remembered there were mittens that we sometimes used in the ER and mentioned them to the nurse and she said that they do occasionally use them and that would be a good solution. It would not restrain her arm (we don't want to restrict her movement if we can avoid it - it's good to know she's using the arm at all - we just don't want her to injure herself in the process) and yet it would do away with the ability to scratch herself raw or to hit herself with the splint. She could still rub, which may be a problem, but it won't be as bad of a problem. Hopefully once she gets a few doses of antibiotics the agitation will disappear and it will be a moot point.
Anyhow - a setback and disappointing but we're glad they've quickly diagnosed the problem and are hopeful that it will not take long to clear up the infections and Estelle will be back to where she was 2 weeks ago.
Thursday, October 27, 2011
Thursday, October 27, 2011
Today was Estelle's semi-annual "care plan" meeting with the social worker, the head nurse, the nutritionist and the occupational therapist.
There really wasn't much discussed, to be honest. The same things that are good, are good and the same things that are bad, are bad. Nursing staff says she remains more alert than when she first arrived with some really good communicative days and fewer days without any communication at all. Because she had several very good weeks lately and now has quit talking again I did ask that they get permission from the doctor to do another urine culture just to make sure she is not suffering from an undiagnosed UTI which often leads her to become lethargic and non-verbal.
She is still scratching herself and they are trying to keep her nails short so she cannot break the skin but her skin is very fragile and it's not always possible. They cannot, by law, restrain her with any sort of hand split not ordered for PT so they are trying to get new splints from Physical Therapy and an order from the doctor to leave them on for a portion of the day. They had been doing this before but apparently it can no longer be done without a more current order.
Her oral care remains problematic. She does not cooperate with tooth cleaning or mouth swabbing at all. They do the best they can but they cannot risk having her break a tooth or bite herself (or anyone else) in the process.
The new feeding tube is not working any better than the old feeding tube, unfortunately. It is still leaking and the site remains open and inflamed. Some weeks it looks better than others but it never heals entirely. The nutritionist is becoming concerned that she is leaking more of her feeding than being reported since her weight is fluctuating without any other apparent cause. Personally, I'm not too concerned. She weighed 142 in March when she arrived here from The Manor. In June, she weighed 154 and they talked about cutting back on the amount of calories being given. (Unfortunately no one seems to know if they did or did not do so and the nutrition chart was not available. I seem to remember that they did - but that nutritionist no longer works here so I'm on my own.) She went down to 140 in September and is currently back up to 143 - which is a decent weight for a woman of her height and age. They did do a blood work up in Sept. to make sure the weight loss didn't have a physical cause and found nothing. That was when the last feeding tube was leaking really badly, so it's possible that she was not getting enough calories before the tube was replaced on the 13th.
The Activity Director said that once or twice a week Gary, the guitar player, either went to her room and played for her personally or they took her out to the commmon room when he entertained the entire floor. She seems to enjoy it although Gary reports that she does not speak to him or acknowledge his presence.
I visited with Estelle both before and after the meeting but she spoke to me neither time. She did open her eyes and look at me but she shut them again and that was that. There were letters and cards there to be read to her but she did not seem at all interested and so I tucked them in the drawer for next time.
She looks very good. There is color in her face and her hair was fixed attractively. It's getting quite long and we're trying to arrange for hair cut but until then the nurses have figured out how to pull it up into a high pony-tail and it really looks very good on her.
There really wasn't much discussed, to be honest. The same things that are good, are good and the same things that are bad, are bad. Nursing staff says she remains more alert than when she first arrived with some really good communicative days and fewer days without any communication at all. Because she had several very good weeks lately and now has quit talking again I did ask that they get permission from the doctor to do another urine culture just to make sure she is not suffering from an undiagnosed UTI which often leads her to become lethargic and non-verbal.
She is still scratching herself and they are trying to keep her nails short so she cannot break the skin but her skin is very fragile and it's not always possible. They cannot, by law, restrain her with any sort of hand split not ordered for PT so they are trying to get new splints from Physical Therapy and an order from the doctor to leave them on for a portion of the day. They had been doing this before but apparently it can no longer be done without a more current order.
Her oral care remains problematic. She does not cooperate with tooth cleaning or mouth swabbing at all. They do the best they can but they cannot risk having her break a tooth or bite herself (or anyone else) in the process.
The new feeding tube is not working any better than the old feeding tube, unfortunately. It is still leaking and the site remains open and inflamed. Some weeks it looks better than others but it never heals entirely. The nutritionist is becoming concerned that she is leaking more of her feeding than being reported since her weight is fluctuating without any other apparent cause. Personally, I'm not too concerned. She weighed 142 in March when she arrived here from The Manor. In June, she weighed 154 and they talked about cutting back on the amount of calories being given. (Unfortunately no one seems to know if they did or did not do so and the nutrition chart was not available. I seem to remember that they did - but that nutritionist no longer works here so I'm on my own.) She went down to 140 in September and is currently back up to 143 - which is a decent weight for a woman of her height and age. They did do a blood work up in Sept. to make sure the weight loss didn't have a physical cause and found nothing. That was when the last feeding tube was leaking really badly, so it's possible that she was not getting enough calories before the tube was replaced on the 13th.
The Activity Director said that once or twice a week Gary, the guitar player, either went to her room and played for her personally or they took her out to the commmon room when he entertained the entire floor. She seems to enjoy it although Gary reports that she does not speak to him or acknowledge his presence.
I visited with Estelle both before and after the meeting but she spoke to me neither time. She did open her eyes and look at me but she shut them again and that was that. There were letters and cards there to be read to her but she did not seem at all interested and so I tucked them in the drawer for next time.
She looks very good. There is color in her face and her hair was fixed attractively. It's getting quite long and we're trying to arrange for hair cut but until then the nurses have figured out how to pull it up into a high pony-tail and it really looks very good on her.
Tuesday, October 25, 2011
Sunday 10/23
Saturday I was under the weather myself, so didn't get to stop in on Mom. Sunday was disappointing. Mom did not speak a word to me; she just stared. I stayed about 45 minutes, played a few songs, and periodically attempted to get a few words out of her. I don't know if she can't talk or won't. It's not alarming, necessarily -- she did this for weeks back in New Jersey before she moved, and then it reversed itself. We'll see if it persists.
D
D
Tuesday, October 18, 2011
10/15-10/16, 2011
I wanted to drop in and leave a quick note, since I've been fairly remiss with the blog the last couple of weeks.
This Saturday, Mom was in the common room watching the big television when I arrived, and we did not talk that much. It was hard to have a conversation, because to make sure mom hears you, sometimes you find yourself talking more loudly than is really polite to other residents in a common area.
So, we talked a little, we watched a little TV, as Mom preferred. I think it's disorienting when she's anywhere other than her room, and I don't think she focuses on the TV -- it's like someone who has it on as background noise. I am not sure she can pick out various sounds as well as you and I might -- that faculty that allows you to home in on one voice you know out of a crowd seems damaged. Maybe I'm overgeneralizing. In any event, she hasn't shown much interest at all in television.
When she was confused, however, she told me all about her son Dan before she understood I was Dan (again.) At least one gets an honest assessment that way. She definitely likes the guitar, it turns out... she even tells "strangers" about it.
On Sunday the weather was beautiful, so we went downstairs and outside on the patio, and I sat next to Mom, and talked with her. Really, this weekend I talked more to her. She is still talking more, but her lucidity was just not at all sharp this weekend. I took a long time assuring her that they weren't expecting her at the local school to help the first graders read, and that she did not have an operation scheduled. I think she patches together narrative from things remembered and things overheard. We probably all would.
I won't go into the physical side of things, but there is no major change. Her right arm is suddenly very active with a variety of nervous habits in the last month or so, but she does not have control over it. For brief amounts of time I can ask her to do things like try to hold onto something, but nothing more complex than that. She mainly seems interested in repeatedly rubbing the top of her left arm with her right hand, but denies that the arm hurts or itches.
Whattaya gonna do. I don't want to ask that her arm be restrained - it's the only thing she moves. But we'll see how much trouble it makes.
Mom continues to have the sweetest year she can, under the circumstances. For any of us who wonder whether a given year is sweet enough, she makes a persuasive and eloquent argument for the wonder of a good meal, a drive, a book, or a conversation. So if you pray, she's a catalog of things for which to give thanks, and if you don't, she's a catalog of things to be happy about. And in the midst of all she doesn't have, she still shows an appreciation of those little things still left for her to enjoy.
All's not rosy, as you might expect. I think she's beginning to be lonely a lot more, because she's more conscious of time passing, and I think she's frustrated with her circumstances, when she focuses on them. But she does stay attached to those good things she finds scattered about the passing hours.
When I left Sunday, I said "I'm going now, but I'll be back on Saturday." There was a long pause, as there often is, and she replied, "No choice."
But she laughed this weekend too, and enjoyed the breeze on a sunny day, and opined that I play lovely guitar. And she also made me laugh Sunday, when I was just playing a blues progression in the background (relax, nothing maudlin, just a little funky,) while we talked.
"You just play the same thing over and over," she said... but she laughed while she was saying it. It was a glimmer of her old sense of humor, not a purely innocent observation. That was my cue to pick one of the half dozen or so songs that she likes, and to get on with it already -- as Zappa put it, "Shut up and play yer guitar."
She surprised me a little Saturday too. An old guy who was also propped up in a geri chair in the common room groaned loudly. She said "is that me?" I said no, it was someone else, who must be uncomfortable -- but since we're in public, we should probably not discuss him. "That would be judicious," she said.
I mean, who retains "judicious" sometimes, and can't find the direct object in sentences other times? Her vocabulary is still in there... But hanging on to a thought until the end of a sentence is hard.
In any event, it's the busy season where I work, and I'm hoping I can get in a little early. Thanks to everyone who's writing to/talking with/thinking of her, and I'll try to reach folks this weekend when I'm there.
Everybody be well, be healthy, and have a sweet new year.
Dan
This Saturday, Mom was in the common room watching the big television when I arrived, and we did not talk that much. It was hard to have a conversation, because to make sure mom hears you, sometimes you find yourself talking more loudly than is really polite to other residents in a common area.
So, we talked a little, we watched a little TV, as Mom preferred. I think it's disorienting when she's anywhere other than her room, and I don't think she focuses on the TV -- it's like someone who has it on as background noise. I am not sure she can pick out various sounds as well as you and I might -- that faculty that allows you to home in on one voice you know out of a crowd seems damaged. Maybe I'm overgeneralizing. In any event, she hasn't shown much interest at all in television.
When she was confused, however, she told me all about her son Dan before she understood I was Dan (again.) At least one gets an honest assessment that way. She definitely likes the guitar, it turns out... she even tells "strangers" about it.
On Sunday the weather was beautiful, so we went downstairs and outside on the patio, and I sat next to Mom, and talked with her. Really, this weekend I talked more to her. She is still talking more, but her lucidity was just not at all sharp this weekend. I took a long time assuring her that they weren't expecting her at the local school to help the first graders read, and that she did not have an operation scheduled. I think she patches together narrative from things remembered and things overheard. We probably all would.
I won't go into the physical side of things, but there is no major change. Her right arm is suddenly very active with a variety of nervous habits in the last month or so, but she does not have control over it. For brief amounts of time I can ask her to do things like try to hold onto something, but nothing more complex than that. She mainly seems interested in repeatedly rubbing the top of her left arm with her right hand, but denies that the arm hurts or itches.
Whattaya gonna do. I don't want to ask that her arm be restrained - it's the only thing she moves. But we'll see how much trouble it makes.
Mom continues to have the sweetest year she can, under the circumstances. For any of us who wonder whether a given year is sweet enough, she makes a persuasive and eloquent argument for the wonder of a good meal, a drive, a book, or a conversation. So if you pray, she's a catalog of things for which to give thanks, and if you don't, she's a catalog of things to be happy about. And in the midst of all she doesn't have, she still shows an appreciation of those little things still left for her to enjoy.
All's not rosy, as you might expect. I think she's beginning to be lonely a lot more, because she's more conscious of time passing, and I think she's frustrated with her circumstances, when she focuses on them. But she does stay attached to those good things she finds scattered about the passing hours.
When I left Sunday, I said "I'm going now, but I'll be back on Saturday." There was a long pause, as there often is, and she replied, "No choice."
But she laughed this weekend too, and enjoyed the breeze on a sunny day, and opined that I play lovely guitar. And she also made me laugh Sunday, when I was just playing a blues progression in the background (relax, nothing maudlin, just a little funky,) while we talked.
"You just play the same thing over and over," she said... but she laughed while she was saying it. It was a glimmer of her old sense of humor, not a purely innocent observation. That was my cue to pick one of the half dozen or so songs that she likes, and to get on with it already -- as Zappa put it, "Shut up and play yer guitar."
She surprised me a little Saturday too. An old guy who was also propped up in a geri chair in the common room groaned loudly. She said "is that me?" I said no, it was someone else, who must be uncomfortable -- but since we're in public, we should probably not discuss him. "That would be judicious," she said.
I mean, who retains "judicious" sometimes, and can't find the direct object in sentences other times? Her vocabulary is still in there... But hanging on to a thought until the end of a sentence is hard.
In any event, it's the busy season where I work, and I'm hoping I can get in a little early. Thanks to everyone who's writing to/talking with/thinking of her, and I'll try to reach folks this weekend when I'm there.
Everybody be well, be healthy, and have a sweet new year.
Dan
Monday, October 3, 2011
Sat. 10/1 - Sun. 10/2
Dan here again. Mom's day Saturday was simply wonderful. Those of you who've talked to her lately know that her ability to hold conversations has improved. It's a relative thing of course; she's still slower in conversation than most people, and her speech is still slurred.
Sometimes, especially at first, it was very hard to understand her. But other times, if you disregard the slurring, she held up her end of the conversation quite well. The beginning of the visit took on a light tone as a result. When I arrived, she did not quite realize who I was, and generally seemed to be in and out of clarity. At some point early in the visit I was clarifying, "I'm your son, Dan."
This happens often enough, at first -- not always, but it's never a surprise. This time she replied with "Do you know my son Dan?" I answered "I am your son Dan." She opened her eyes wider, focused on me, and started laughing. "It's a bit of an absurd conversation," she said. We actually both laughed together at that.
This may seem ordinary or in fact somewhat sad, but to me it was wonderful to see. She was recognizing the absurdity of the situation, and employing her lifelong ally against the slings and arrows, that is, her sense of humor. I have not heard her laugh for months, not like that. Maybe an occasional "Hah!" in an editorial way... but not laughter from the heart.
Then she asked "Do you know my daughter Vivien?" and before I could answer she laughed some more and said "Well of course you do, you're my son!"
The remainder of Saturday she was more and more clear, and in a good mood throughout. I showed her a card that had arrived for the holiday, and she held it, and looked at it, and started to worry about getting her holiday cards out. I told her people understood if she didn't send them out this year, because she's been ill. She seemed satisfied with this out, and took it. (We continue to thank you for your cards and letters.)
As to Sunday, in the morning she wasn't awake so I returned in the evening. Things were a little more muddled, but again, she continues to be easier to understand than during those periods of "decline." I'm still mindful that her abilities come and go. We're still hopeful that her present level of lucidity is more normal, and due to more vigilance about urinary tract infections (monitoring and prompt treatment for same.) They're very common in her condition, and can cause confusion.
Since becoming more lucid, she'd developed a nervous habit with her right hand. She does not so often pick at her arm or the site of her feeding tube, but now she constantly touches her teeth and her lips with her right forefinger. I asked her why she does it -- then, realizing she may not be conscious of it, whether she knows she's doing it. She said people tell her she is, but then followed up with "I know I'm doing it, it's a nervous habit."
That worries me a little. I worry she might bite herself, or that she might return to scratching, which could cause infection. I brought this to her nurse's attention, along with another red area on one of her arms on Saturday. She's got more antibiotic ointment on that area now, but none of us quite know what to do about the wandering forefinger.
Ah well, that's a hazard of an active nervous system, I suppose... you may develop nervous habits.
Love to you all, and l'shana tovah to our Jewish friends and relatives,
Dan
Sometimes, especially at first, it was very hard to understand her. But other times, if you disregard the slurring, she held up her end of the conversation quite well. The beginning of the visit took on a light tone as a result. When I arrived, she did not quite realize who I was, and generally seemed to be in and out of clarity. At some point early in the visit I was clarifying, "I'm your son, Dan."
This happens often enough, at first -- not always, but it's never a surprise. This time she replied with "Do you know my son Dan?" I answered "I am your son Dan." She opened her eyes wider, focused on me, and started laughing. "It's a bit of an absurd conversation," she said. We actually both laughed together at that.
This may seem ordinary or in fact somewhat sad, but to me it was wonderful to see. She was recognizing the absurdity of the situation, and employing her lifelong ally against the slings and arrows, that is, her sense of humor. I have not heard her laugh for months, not like that. Maybe an occasional "Hah!" in an editorial way... but not laughter from the heart.
Then she asked "Do you know my daughter Vivien?" and before I could answer she laughed some more and said "Well of course you do, you're my son!"
The remainder of Saturday she was more and more clear, and in a good mood throughout. I showed her a card that had arrived for the holiday, and she held it, and looked at it, and started to worry about getting her holiday cards out. I told her people understood if she didn't send them out this year, because she's been ill. She seemed satisfied with this out, and took it. (We continue to thank you for your cards and letters.)
As to Sunday, in the morning she wasn't awake so I returned in the evening. Things were a little more muddled, but again, she continues to be easier to understand than during those periods of "decline." I'm still mindful that her abilities come and go. We're still hopeful that her present level of lucidity is more normal, and due to more vigilance about urinary tract infections (monitoring and prompt treatment for same.) They're very common in her condition, and can cause confusion.
Since becoming more lucid, she'd developed a nervous habit with her right hand. She does not so often pick at her arm or the site of her feeding tube, but now she constantly touches her teeth and her lips with her right forefinger. I asked her why she does it -- then, realizing she may not be conscious of it, whether she knows she's doing it. She said people tell her she is, but then followed up with "I know I'm doing it, it's a nervous habit."
That worries me a little. I worry she might bite herself, or that she might return to scratching, which could cause infection. I brought this to her nurse's attention, along with another red area on one of her arms on Saturday. She's got more antibiotic ointment on that area now, but none of us quite know what to do about the wandering forefinger.
Ah well, that's a hazard of an active nervous system, I suppose... you may develop nervous habits.
Love to you all, and l'shana tovah to our Jewish friends and relatives,
Dan
Sunday, September 25, 2011
Sat. 9/24 - Sun. 9/25
Mom is much more talkative now, and much clearer-minded. Although some of what she talks about is still not tracking with events, her personality is much stronger, and her speech is easier to understand, although her voice is very weak. Conversation is not as much of a chore for her, and there's less searching for the right word. She still is slower to respond than the average person. There's a slight delay between one statement and the next or between a question and an answer, but nothing like she has been the past few months. I really do think that the effects of the stroke were intensified by the presence of UTIs, which we have requested they check for regularly.
We talked a lot today, and she chatted with Meryl and with Vivien for a long time. The one downside of what seems like greater focus is that she's now much more lonely than before, something she expressed a couple of times this weekend. I stayed until she dropped off into one of her frequent naps, and talked to her nurse for a bit after that (mom was saying she had a tummy ache, which I passed on -- though evidently it was not so severe that it kept her from drifting off.)
We are all hoping that the improvement persists through next weekend, and continues.
We talked a lot today, and she chatted with Meryl and with Vivien for a long time. The one downside of what seems like greater focus is that she's now much more lonely than before, something she expressed a couple of times this weekend. I stayed until she dropped off into one of her frequent naps, and talked to her nurse for a bit after that (mom was saying she had a tummy ache, which I passed on -- though evidently it was not so severe that it kept her from drifting off.)
We are all hoping that the improvement persists through next weekend, and continues.
Monday, September 19, 2011
Sunday, September 18, 2011
We visited with Estelle twice yesterday. Dan and I went together in the late morning.early afternoon and Dan returned by himself later in the day.
Estelle was alert and talkative both times. She was being brought out into the common area when we arrived in the morning and the nurses made a place for the three of us in the hallway since the dining/meeting area was pretty full already. It is hard to talk with Estelle when there is alot of extraneous noise or activity going on around her. Her voice is weak and she does not always seem to hear us well unless we talk at a louder than normal voice - both of which make communication difficult even under the best of circumstances. The more alert she becomes the more she notices and is distracted by any activity which would not normally concern her. She also seems fearful of it, to be honest. She asked several times if we would stay until she left and would we "see her off." While there was some confusion as to what she might have meant, I think she simply felt that she was not in her room, which has become her home, and she did not quite know how or when she would be returned to the safety of that room/home and did not want to be left alone until such a move took place. I know when we were in the hospital on Tuesday that she kept asking me to be sure I did not leave without her.
Anyhow - we had a nice visit. Estelle took phone calls from Marlene and Viv and seemed to enjoy both of them very much. Dan also read her a New Year's card from Viv and a letter from Meryl which she pronounced, "Lovely."
She wanted Dan to play guitar for her and, since he did not have it with him, he promised he would return later in the day to do so....which he did.
The feeding tube seems to be remaining in place. I did not get a chance to check the site because she was in the hallway but they do have her hand splints back on and she was not picking at it this time so I am hoping it remains firmly attached and working well.
Estelle was alert and talkative both times. She was being brought out into the common area when we arrived in the morning and the nurses made a place for the three of us in the hallway since the dining/meeting area was pretty full already. It is hard to talk with Estelle when there is alot of extraneous noise or activity going on around her. Her voice is weak and she does not always seem to hear us well unless we talk at a louder than normal voice - both of which make communication difficult even under the best of circumstances. The more alert she becomes the more she notices and is distracted by any activity which would not normally concern her. She also seems fearful of it, to be honest. She asked several times if we would stay until she left and would we "see her off." While there was some confusion as to what she might have meant, I think she simply felt that she was not in her room, which has become her home, and she did not quite know how or when she would be returned to the safety of that room/home and did not want to be left alone until such a move took place. I know when we were in the hospital on Tuesday that she kept asking me to be sure I did not leave without her.
Anyhow - we had a nice visit. Estelle took phone calls from Marlene and Viv and seemed to enjoy both of them very much. Dan also read her a New Year's card from Viv and a letter from Meryl which she pronounced, "Lovely."
She wanted Dan to play guitar for her and, since he did not have it with him, he promised he would return later in the day to do so....which he did.
The feeding tube seems to be remaining in place. I did not get a chance to check the site because she was in the hallway but they do have her hand splints back on and she was not picking at it this time so I am hoping it remains firmly attached and working well.
Tuesday, September 13, 2011
Tuesday, September 13, 2011
Sorry for the delay.
The hospital was unable to schedule a tube replacement yesterday and so it was done at 8AM this morning....well, the appointment was scheduled for 8AM but the actual procedure did not happen until nearly 9:30.
All went well - it took less than an hour and this time it was done in an actual surgical suite under flueroscopy instead of at the bedside as they've done in the past. I was not allowed to watch this time but they assured me that everything was fine and that Estelle did not require sedation or anything else during the procedure.
It took another hour for the ambulance to return to bring her back to Woodbine and so it was nearly noon by the time she was settled back in her room. I stayed another hour to make sure she was not having any ill effects before leaving. I got a chance to open her cards and letters and read them to her while I was there and she seemed to enjoy them. She particularly liked a picture that Viv sent of her children and husband.
Estelle was very awake and talkative today. The most talkative I've seen her in a long time - but she was confused. She was quite convinced that her sister, Marlene, had driven her to the hospital and was upset that I would not go and find her and bring her back. She was also insistant that I hurry up and have "the baby" pretty soon because it was time and she'd been waiting forever. On the other hand, she knew who I was today (which is unusual) and she answered all questions appropriately, even being quite cooperative and conversant with the nurses and doctors.
She is moving her right arm and hand much more - which is both good and bad. It is good for the obvious reason - but the downside is that she keeps pulling at her feeding tube and that may have been why it fell out this time. She is also inadvertently and randomly scratching her left arm quite badly. Her nurse wants to get an order from the doctor to place an abdominal binder on her midsection so she cannot get to the feeding tube but that contradicts the hospital order to leave the site open to air because it is infected again so I asked her to hold off on that until Dan and I can discuss other options. So far we have come up with two possible suggestions. I thought that perhaps the tube can be anchored in several places with tape - making it flush against her skin and harder to grasp at random and pull on. Dan thought that perhaps they can start putting the hand/finger splints back on and then she cannot easily grab at the things. A combination of both might work out best.
We'll talk it over with the nurses and see if either of those things will be possible or even advisable to do. Any other ideas would be appreciated if anyone has a suggestion.
Other than that - that's about all I know. Estelle seemed pretty content today. Not at all agitated and quite interested in her surroundings and the people and things in it.
The hospital was unable to schedule a tube replacement yesterday and so it was done at 8AM this morning....well, the appointment was scheduled for 8AM but the actual procedure did not happen until nearly 9:30.
All went well - it took less than an hour and this time it was done in an actual surgical suite under flueroscopy instead of at the bedside as they've done in the past. I was not allowed to watch this time but they assured me that everything was fine and that Estelle did not require sedation or anything else during the procedure.
It took another hour for the ambulance to return to bring her back to Woodbine and so it was nearly noon by the time she was settled back in her room. I stayed another hour to make sure she was not having any ill effects before leaving. I got a chance to open her cards and letters and read them to her while I was there and she seemed to enjoy them. She particularly liked a picture that Viv sent of her children and husband.
Estelle was very awake and talkative today. The most talkative I've seen her in a long time - but she was confused. She was quite convinced that her sister, Marlene, had driven her to the hospital and was upset that I would not go and find her and bring her back. She was also insistant that I hurry up and have "the baby" pretty soon because it was time and she'd been waiting forever. On the other hand, she knew who I was today (which is unusual) and she answered all questions appropriately, even being quite cooperative and conversant with the nurses and doctors.
She is moving her right arm and hand much more - which is both good and bad. It is good for the obvious reason - but the downside is that she keeps pulling at her feeding tube and that may have been why it fell out this time. She is also inadvertently and randomly scratching her left arm quite badly. Her nurse wants to get an order from the doctor to place an abdominal binder on her midsection so she cannot get to the feeding tube but that contradicts the hospital order to leave the site open to air because it is infected again so I asked her to hold off on that until Dan and I can discuss other options. So far we have come up with two possible suggestions. I thought that perhaps the tube can be anchored in several places with tape - making it flush against her skin and harder to grasp at random and pull on. Dan thought that perhaps they can start putting the hand/finger splints back on and then she cannot easily grab at the things. A combination of both might work out best.
We'll talk it over with the nurses and see if either of those things will be possible or even advisable to do. Any other ideas would be appreciated if anyone has a suggestion.
Other than that - that's about all I know. Estelle seemed pretty content today. Not at all agitated and quite interested in her surroundings and the people and things in it.
Monday, September 12, 2011
Monday, September 12, 2011
We're back!! Got in late last night and so we did not get a chance to visit Estelle. We had kept in touch by phone, however, and regretfully I must report that her feeding tube fell out some time yesterday morning. They could not replace it at the home and so we are waiting for an appointment time at the hospital again today. Meanwhile, they have started an IV to assure that she remains well hydrated.
We had a few phone calls from the nurses while we were away cncerning minor things....a slight rash, a small blister, a redness on her coxxyx area, and a regular update on her weight. She has lost 15 pounds since her admission - which they were looking for her to do. Now that she's done so they are going to recheck her thyroid, however, just to make sure it was the change in calories and not a medical reason that the weight loss has occured.
Other that those few things the staff reports that she's been doing well.
We had a few phone calls from the nurses while we were away cncerning minor things....a slight rash, a small blister, a redness on her coxxyx area, and a regular update on her weight. She has lost 15 pounds since her admission - which they were looking for her to do. Now that she's done so they are going to recheck her thyroid, however, just to make sure it was the change in calories and not a medical reason that the weight loss has occured.
Other that those few things the staff reports that she's been doing well.
Sunday, August 28, 2011
Saturday, August 27
I stopped in on Mom in the morning, before the weather moved in, but she was not to be roused. As of late morning Sunday, we're still waiting for them to open our beach back up, and for the owner to report on the condition of our rental. We're optimistic that we can get into the rental today or tomorrow.
Here in Alexandria, the storm was mainly just a lot of wind and water, but very little damage. Even at the water's edge in old town there was no flooding, because we were on the "back end" (western side) of the core of the storm. I spoke to Woodbine this morning, and they lost incoming calls, but not outgoing (they called me to let me know.) The technicians are working on the incoming call problem, but they did not lose power or have to evacuate.
I hope all of you on the U.S. East Coast will have or had a similarly easy time with Irene, and wanted to let everyone know that here in Alexandria she was only an inconvenience.
Here in Alexandria, the storm was mainly just a lot of wind and water, but very little damage. Even at the water's edge in old town there was no flooding, because we were on the "back end" (western side) of the core of the storm. I spoke to Woodbine this morning, and they lost incoming calls, but not outgoing (they called me to let me know.) The technicians are working on the incoming call problem, but they did not lose power or have to evacuate.
I hope all of you on the U.S. East Coast will have or had a similarly easy time with Irene, and wanted to let everyone know that here in Alexandria she was only an inconvenience.
Tuesday, August 23, 2011
Tuesday, August 23, 2011
Well that was an interesting experience we all could have lived without!!
Quick earthquake report - everyone's fine. I called Woodbine as soon as I could get a line out and Estelle is fine. They felt the quake and had some shaking but no damage and they did not have to evacuate or move any of their patients or staff.
Dan and I lost a few pictures - everything fell off of the walls, dressers and end tables. Some of the books got shaken out of the bookcase. We had to evacuate our condo building for about 3 hours because they feared structural damage. There are some ceiling and wall cracks but apparently we've been pronounced sound enough to return.
And so I am back inside now cleaning up. Dan's building was also evacuated in DC. I still cannot talk to him by cell phone or land line but we can text and he will be leaving work shortly. Trains are not running well, however, so I don't know exactly when or how he'll be getting home.
Who ever heard of earthquakes in DC????
Quick earthquake report - everyone's fine. I called Woodbine as soon as I could get a line out and Estelle is fine. They felt the quake and had some shaking but no damage and they did not have to evacuate or move any of their patients or staff.
Dan and I lost a few pictures - everything fell off of the walls, dressers and end tables. Some of the books got shaken out of the bookcase. We had to evacuate our condo building for about 3 hours because they feared structural damage. There are some ceiling and wall cracks but apparently we've been pronounced sound enough to return.
And so I am back inside now cleaning up. Dan's building was also evacuated in DC. I still cannot talk to him by cell phone or land line but we can text and he will be leaving work shortly. Trains are not running well, however, so I don't know exactly when or how he'll be getting home.
Who ever heard of earthquakes in DC????
Saturday, August 20, 2011
Sat. 8/20/2011
I dropped in on Mom mid-afternoon, and she was wide awake when I got there. We talked for a while. I read her her mail, and told her what I knew of how everyone was getting on, which she punctuated now and then with "that's good." I told her about our upcoming vacation, and she asked how long we'd be gone. I told her two weeks, and she said it sounded lovely. Then she asked if I had any children, and we talked through the grown kids and my grandkids with Laura. She wanted to know their birthdays, which was a stumper, so I called Laura and got the inside, then passed it along (no birthdays until November!) But that reminded me that both our birthdays (mine and Laura's) are next week - so I reminded Mom of that. She asked me what she should get Laura, and I told her a sun dress would be nice. I told her I'd get Laura a sundress from her, and she said that would be good. I talked to her more about Nag's Head and some of the other Outer Banks towns like Manteo, Salvo, Cape Hatteras, etc. I've been back enough since we were kids that I don't remember the places that we did and did not stay the few times we went there as kids -- we were probably in and around Nag's Head most of the time. I told her now they have to pump sand onto the beach, and she said something about a bottle. I could not quite grasp the context - maybe finding a message in a bottle, maybe I should bring her some sand in a bottle, maybe she meant the big glass jar of shells she had back at her condo. So I asked whether I should bring back some of the nicer shells we find, for her to look over, feel, etc. She did not seem particularly sentimental about the prospect of such treasures, but I'll give it a shot anyway. Worst thing that can happen is she won't care, and that will be that.
We talked a little with friends on the phone, and Mom got drowsy - so I told her I'd come back tomorrow. She left with a hearty "I'll talk to you tonight" -- so I countered with "how about if I come by tomorrow?" And she said "Yes, even better." Sunday we'll call around to whoever's home, maybe read the paper (well, I may read it, and she may or may not listen), talk if she feels like it, and generally have as much fun as possible under the circumstances. I hope to talk to some of you then!
Dan
We talked a little with friends on the phone, and Mom got drowsy - so I told her I'd come back tomorrow. She left with a hearty "I'll talk to you tonight" -- so I countered with "how about if I come by tomorrow?" And she said "Yes, even better." Sunday we'll call around to whoever's home, maybe read the paper (well, I may read it, and she may or may not listen), talk if she feels like it, and generally have as much fun as possible under the circumstances. I hope to talk to some of you then!
Dan
Sunday, August 7, 2011
Sunday, 8/7/11
Yesterday (Saturday) was a non-responsive day. Mom was in her room, but wouldn't wake up for the bloody apocalypse, and that was that. Her nurse said she'd been sleeping much more and waking much less that week, which was worrying. Today I found her in a common area, where she was again sleeping comfortably (and unresponsively.) So I was not very hopeful.
I asked a nurse to wheel her back to her room, and the movement did the trick. At first she couldn't get the ol' speech centers engaged, or just had too much gunk in the way. At the moment, regrettably, that's a possibility, although they use a suction machine on her often to keep her mouth as clear as possible. On that front, at least the nurse said the lung secretions were not as copious, and her last x-rays came back clean for anything an x-ray would see. There was a fair amount of amateur clean-up today, but I don't think we need to discuss those details.
In any event, her eyes opened and she recognized me when we got into her room, and after a time-out while the nurse hooked up the g-tube to the feeding pump, we had a nice conversation. She was much more with it again today, and we were able to talk to the English relatives (Herschel was there, and she'd been asking about him, so it was wonderful to hear his voice.) We also spoke to Meryl up in Jersey again, but couldn't reach Viv.
We talked about everyone's vacation plans, and I reminded her about the Outer Banks, where we'd also gone as kids. It seemed to be an engaging topic, and I talked to her about our upcoming beach trip -- which she followed much better than topics like "what's going on in the world right now." I told her I had pretty happy memories of the Outer Banks, except the time when my shoulders got sunburned so badly I had shoulder-pad size blisters on both sides. She remembered that and said, "oh, that was terrible. Be careful this time."
I also mentioned that the place was my favorite beach - you can keep your sugar-white sand and clear blue caribbean waters. I'll take the murky chilly atlantic and the threat of a Noreaster, as long as I know the ghost crabs and the dolphin pods personally. I asked her if she liked it there, and she said yes... I said "but then, you were always breaking up the fights and making the sandwiches," and she actually laughed. "It might be different," was her way of putting it.
After talking to some friends on the phone, I switched on the TV, to see how Mom feels about TV. Evidently, about the same. It didn't matter whether it was crocodiles, volcanos, or mobsters, she zoned out pretty quickly and pretty thoroughly... I woke her enough to let her know that I'd leave it on the news channel (CNN, I'll be damned if I'll leave it on Fox for her to be propagandized,) and that I'd have to go to get our shopping done.
I do worry a bit. The last time we left it on, she became convinced one of us was dead in a terrible accident. But that could well have been a UTI talking, so we'll see whether any more confusion results. She really doesn't seem to be riveted by it, but who knows.
Best until next week,
D
I asked a nurse to wheel her back to her room, and the movement did the trick. At first she couldn't get the ol' speech centers engaged, or just had too much gunk in the way. At the moment, regrettably, that's a possibility, although they use a suction machine on her often to keep her mouth as clear as possible. On that front, at least the nurse said the lung secretions were not as copious, and her last x-rays came back clean for anything an x-ray would see. There was a fair amount of amateur clean-up today, but I don't think we need to discuss those details.
In any event, her eyes opened and she recognized me when we got into her room, and after a time-out while the nurse hooked up the g-tube to the feeding pump, we had a nice conversation. She was much more with it again today, and we were able to talk to the English relatives (Herschel was there, and she'd been asking about him, so it was wonderful to hear his voice.) We also spoke to Meryl up in Jersey again, but couldn't reach Viv.
We talked about everyone's vacation plans, and I reminded her about the Outer Banks, where we'd also gone as kids. It seemed to be an engaging topic, and I talked to her about our upcoming beach trip -- which she followed much better than topics like "what's going on in the world right now." I told her I had pretty happy memories of the Outer Banks, except the time when my shoulders got sunburned so badly I had shoulder-pad size blisters on both sides. She remembered that and said, "oh, that was terrible. Be careful this time."
I also mentioned that the place was my favorite beach - you can keep your sugar-white sand and clear blue caribbean waters. I'll take the murky chilly atlantic and the threat of a Noreaster, as long as I know the ghost crabs and the dolphin pods personally. I asked her if she liked it there, and she said yes... I said "but then, you were always breaking up the fights and making the sandwiches," and she actually laughed. "It might be different," was her way of putting it.
After talking to some friends on the phone, I switched on the TV, to see how Mom feels about TV. Evidently, about the same. It didn't matter whether it was crocodiles, volcanos, or mobsters, she zoned out pretty quickly and pretty thoroughly... I woke her enough to let her know that I'd leave it on the news channel (CNN, I'll be damned if I'll leave it on Fox for her to be propagandized,) and that I'd have to go to get our shopping done.
I do worry a bit. The last time we left it on, she became convinced one of us was dead in a terrible accident. But that could well have been a UTI talking, so we'll see whether any more confusion results. She really doesn't seem to be riveted by it, but who knows.
Best until next week,
D
Thursday, August 4, 2011
Thursday, August 4. 2011
Briefly, Estelle continues to have trouble with a cough and the resulting secretions. Because the cough continues unabated the doctor is starting her on another course of antibiotics. This time she will be getting a 7 day course of Leviquin along with her breathing treatments and numerous attempts at suctioning. Another chest x-ray will be taken this afternoon and they will call us with the results.
She is also having some trouble with intermittent blistering on various areas of her body. It is hard to tell what is causing this. They come and go and never seem to occur in the same place twice. It could be a simple heat rash - the temperatures here have been record breaking or it could be some sort of infectious process. They are scrupulous in searching her for them and as soon as one is found they treat it topically and aggressively and it seems to keep them from spreading or becoming worse. It is a bit worrisome that they keep cropping up, however, and I'm considering asking the doctor to culture one the next time it happens just to rule out infection or more MRSA.
All-in-all, things remain unchanged.
She is also having some trouble with intermittent blistering on various areas of her body. It is hard to tell what is causing this. They come and go and never seem to occur in the same place twice. It could be a simple heat rash - the temperatures here have been record breaking or it could be some sort of infectious process. They are scrupulous in searching her for them and as soon as one is found they treat it topically and aggressively and it seems to keep them from spreading or becoming worse. It is a bit worrisome that they keep cropping up, however, and I'm considering asking the doctor to culture one the next time it happens just to rule out infection or more MRSA.
All-in-all, things remain unchanged.
Sunday, July 31, 2011
Sat. 7/30-Sun. 7/31
Well, yesterday (Saturday) Mom was fairly chatty, at least at first. She kept mentioning family in England, and we were able to call through. But between how soft her voice is, and I suppose a little difficulty once we called, she didn't manage much over the phone. Her confusion seemed a little cleared up, and she's finished her last course of antibiotics for the last UTI. She also wanted very much to get a glass of water, which of course, she still can't have. Usually, when she is more out of it, it does not bother her. I can only imagine what that must be like, and I usually try not to imagine it (ever her fluids all have to come through the G-tube.) She still has the upper respiratory infection/cough, which does not sound so terrible, but produces a lot of secretions, and we all worry about aspiration (the nurses use a suction pump to try to clear that out, but Mom tends to bite down on the hose - so they have mixed success.) Today, I stopped in and she was adamantly asleep the whole time. Despite a few attempts involving loud "hellos" and a jostle or two, she barely opened her eyes to acknowledge me. So, after a pretty short stay I departed again. Sometimes, I suppose, she'd rather rest.
Sunday, July 24, 2011
Sat. 7/23 - Sun. 7/24
A very brief note today. Saturday I spent a good deal of time with Mom again, and she is back to talking more. I think Laura's recent thought about the UTI connection to her silent periods is spot on. Of course her conversation is never fluid, but Mom was able to talk with me. We called over the pond to Marlene, and also talked to Merryl, and then Mom had had enough of the phone calls for the day. I played guitar for her for a long time, punctuated occasionally by rearrangements of chairs so her roommate could squeeze by. I left a little after five, and told her I'd bring a newspaper and read from it to her, and we could call Viv and Jenny, and she replied "the usual." Well, unfortunately the usual didn't work out so well. She was in the common dining hall when I came in, asleep in front of the television. I tried a bit to wake her, then waited for a little while just watching some inane movie about King Solomon's mines. She never did wake up today while I was there... but seemed to be having quite the satisfying nap.
Well, that's all for this week. I hope all are well, happy, and rested.
Dan
Well, that's all for this week. I hope all are well, happy, and rested.
Dan
Thursday, July 21, 2011
Thursday, July 21. 2011
Finally - we have semi-computer access. Not great, not even good, but better!! Blogging from an IPhone isn't all it's cracked up to be.
Anyhow - a brief update.
Estelle is hanging in there. She's done with her 5 day course of antibiotic for the Upper Respiratory Infection and starting another course for a UTI which was diagnosed yesterday. I think we had mentioned that we had noticed a connection between an decrease in her lethargy whenver she was on an antibiotic and were concerned that she may be suffering from undiagnosed Urinary Tract Infections which got better incidental to antibiotics which were administered for other infections. I mentioned it to her doctor on Monday and he agreed it was a possibility and ordered a urine culture which came back positive for infection yesterday.
I am patting myself on the back here today because I am two for two this week. My own mother has similar problems only she tends to get very weepy and confused when she has a UTI. She called me crying twice this weekend and so I asked her nurse on Monday to check her urine, also, and she, too, was positive.
It is common in older people for the only sign of a UTI to be mental status changes and it's hard to pick up on - especially when, as in Estelle's case, the patient is fairly non-verbal to begin with.
I'm going to try to get the doctor to agree to check her regularily from now on. It's not optimal because it involves getting a urine sample with a catheter each time but an undiagnosed UTI can quickly turn into a full blown kidney infection so, weighing one outcome against the other, I think the regularily scheduled cath is the lesser of the two evils. Plus, she is more alert when she is infection free and I'm sure she probably feels better, too.
Her breathing has eased somewhat and she is coughing frequently now. The nurses are trying to suction her as often as needed but it's an uphill battle because she really fights the suction and proper suctioning requires a good deal of cooperation to succeed 100%. They are doing the best they can under the circumstances and she seems to be able to clear some of it herself so we are hoping it continues to clear up with a combination of the two.
It is desperately hot here in Virginia - as it seems to be everywhere. Everyone please take care in this heat wave - I could never figure out why women in the South were always pictured with umbrellas when it wasn't even raining but now I understand.
My son is coming for a visit from Oregon next week - the temperature there seldom reaches 80 degrees - I am afraid he is not going to like it here very much. He claims to love the heat but I don't think he quite "gets it" and I'm positive he doesn't understand the word "humidity." His wife grew up in Florida so maybe she can prepare him before they arrive.
I certainly hope so.
Anyhow - a brief update.
Estelle is hanging in there. She's done with her 5 day course of antibiotic for the Upper Respiratory Infection and starting another course for a UTI which was diagnosed yesterday. I think we had mentioned that we had noticed a connection between an decrease in her lethargy whenver she was on an antibiotic and were concerned that she may be suffering from undiagnosed Urinary Tract Infections which got better incidental to antibiotics which were administered for other infections. I mentioned it to her doctor on Monday and he agreed it was a possibility and ordered a urine culture which came back positive for infection yesterday.
I am patting myself on the back here today because I am two for two this week. My own mother has similar problems only she tends to get very weepy and confused when she has a UTI. She called me crying twice this weekend and so I asked her nurse on Monday to check her urine, also, and she, too, was positive.
It is common in older people for the only sign of a UTI to be mental status changes and it's hard to pick up on - especially when, as in Estelle's case, the patient is fairly non-verbal to begin with.
I'm going to try to get the doctor to agree to check her regularily from now on. It's not optimal because it involves getting a urine sample with a catheter each time but an undiagnosed UTI can quickly turn into a full blown kidney infection so, weighing one outcome against the other, I think the regularily scheduled cath is the lesser of the two evils. Plus, she is more alert when she is infection free and I'm sure she probably feels better, too.
Her breathing has eased somewhat and she is coughing frequently now. The nurses are trying to suction her as often as needed but it's an uphill battle because she really fights the suction and proper suctioning requires a good deal of cooperation to succeed 100%. They are doing the best they can under the circumstances and she seems to be able to clear some of it herself so we are hoping it continues to clear up with a combination of the two.
It is desperately hot here in Virginia - as it seems to be everywhere. Everyone please take care in this heat wave - I could never figure out why women in the South were always pictured with umbrellas when it wasn't even raining but now I understand.
My son is coming for a visit from Oregon next week - the temperature there seldom reaches 80 degrees - I am afraid he is not going to like it here very much. He claims to love the heat but I don't think he quite "gets it" and I'm positive he doesn't understand the word "humidity." His wife grew up in Florida so maybe she can prepare him before they arrive.
I certainly hope so.
Monday, July 18, 2011
Monday, July 18, 2011
Still no computer access so this is all one-finger typing on an I-Phone. Please excuse the brevity and typing errors. Estelle is marginally better today and the doctor discontinued her IV fluids. There is no active pneumonia on the chest x-Ray but it did show a slight worsening of her cardiomyopathy (enlarged heart) and a bit more area of plural effusion in her lungs. Both of these are indicitve of congestive heart failure which she was found to have back in (I think somewhere around) October when she was rushed to the hospital from the Manor.
I spoke at length to her doctor today and there's really nothing they can do that is not already being done. He's fine tuning her heart medications and keeping her on oxygen and breathing treatments for now but CHF is not a curable condition although it can be treated and the patient can be kept comfortable - which they are doing. It is, however, most likely going to be progressive. This is also what we were td by the cardiologist at CentraState Hospital last year.
Meanwhile, she seems more comfortable today and the raspy breathing is much better. The doctor also ordered a urine culture and we are going to start doing them whenever Dan or I notice she is getting more non-responsive when we visit. He agreed with us that there is a possible connection and it is worth looking into.
I wish there were better news to give everyone but this is not unexpected or insurmountable. It's just one more "thing" to be aware of and to try to keep on top of for family and staff.
I spoke at length to her doctor today and there's really nothing they can do that is not already being done. He's fine tuning her heart medications and keeping her on oxygen and breathing treatments for now but CHF is not a curable condition although it can be treated and the patient can be kept comfortable - which they are doing. It is, however, most likely going to be progressive. This is also what we were td by the cardiologist at CentraState Hospital last year.
Meanwhile, she seems more comfortable today and the raspy breathing is much better. The doctor also ordered a urine culture and we are going to start doing them whenever Dan or I notice she is getting more non-responsive when we visit. He agreed with us that there is a possible connection and it is worth looking into.
I wish there were better news to give everyone but this is not unexpected or insurmountable. It's just one more "thing" to be aware of and to try to keep on top of for family and staff.
Sunday, July 17, 2011
Sunday. July 17, 2011
So sorry. We have no Internet access and will not have it again for several more days. Estelle has been having some raspy breathing and the doctor has ordered breathing treatments, antibiotics and a chest x-ray which is being done today. She has no fever and her vitals are stable at this time.
Thursday, July 7, 2011
Thursday, July 7, 2011
When I first arrived around 9AM, Estelle seemed to be sleeping very soundly so I first straightened her room a bit and hung all of her new cards on her board and then, when I was attempting to check on her feeding tube site (which she seldom wakes up for when I do) she opened her eyes and loudly said either, "Don't bother me," or "Don't bother with me," thereby scaring the life out of me.
I explained who I was (because she often does not recognize me) and what I was doing and she said, "I know all that." I asked her if I could check it and she said sure and so I continued and it looked unchanged. It's still leaking a bit but not badly and her skin remains with the same amount of reddened area as usual. It does not seem to get any better but it certainly is no worse and I suppose that is a good thing.
I sat down and tried to talk to her but she wasn't very responsive. When I asked her how she was she said, "Oh, not so good," but I could not get her to elaborate at all. I went down the list of things which could be hurting and she either said "no," or did not respond to any of them.
I told her about our new car and the broken window and she was silent for about 10 minutes and then, clearly, said, "What did you say?" I repeated it and she said, "Oh, that's terrible," and she asked me what kind of car we had gotten "this time," which was kind of funny because we have had the same car for almost as long as I have known her.
After that it was all downhill. I asked her if there was anyone she wanted to call and she did not respond. I spoke about the weather, I mentioned names of friends and family, I told her about my son's impending visit but she did not respond to any of it.
I stayed for awhile longer without any successful conversation. She appeared to be sleeping when I left. I told her good bye and that we would be back in a day or two but I am unsure if she was aware I was leaving or if she heard what I had said.
Her speech, what little she did say, was very clear, however, and that was a happy thing for me. I often have trouble understanding her but there was very little difficulty today.
Hopefully the weekend will cool down enough that Dan can take her outside for a bit.
I explained who I was (because she often does not recognize me) and what I was doing and she said, "I know all that." I asked her if I could check it and she said sure and so I continued and it looked unchanged. It's still leaking a bit but not badly and her skin remains with the same amount of reddened area as usual. It does not seem to get any better but it certainly is no worse and I suppose that is a good thing.
I sat down and tried to talk to her but she wasn't very responsive. When I asked her how she was she said, "Oh, not so good," but I could not get her to elaborate at all. I went down the list of things which could be hurting and she either said "no," or did not respond to any of them.
I told her about our new car and the broken window and she was silent for about 10 minutes and then, clearly, said, "What did you say?" I repeated it and she said, "Oh, that's terrible," and she asked me what kind of car we had gotten "this time," which was kind of funny because we have had the same car for almost as long as I have known her.
After that it was all downhill. I asked her if there was anyone she wanted to call and she did not respond. I spoke about the weather, I mentioned names of friends and family, I told her about my son's impending visit but she did not respond to any of it.
I stayed for awhile longer without any successful conversation. She appeared to be sleeping when I left. I told her good bye and that we would be back in a day or two but I am unsure if she was aware I was leaving or if she heard what I had said.
Her speech, what little she did say, was very clear, however, and that was a happy thing for me. I often have trouble understanding her but there was very little difficulty today.
Hopefully the weekend will cool down enough that Dan can take her outside for a bit.
Monday, July 4, 2011
Sunday, 7/3/11
Well, I did not make it back today (Monday.) Yesterday Mom was alert again, and we made a few phone calls. Mom was especially sweet with Vivien, saying she wished she could lend a hand with Viv's housework and kids. She seemed very with it. She also said she should learn to use the phone again herself. I showed her the phone on her bed table, and put it on her lap, and I started out trying to get her to recognize where the numbers were on it. I could not get her to touch the numbers, and she showed no sign of connecting the object -- the phone set -- with what she wanted to do (i.e., learning to use it herself.) When Mom is most with it, I get enthusiastic about ideas like "if only she [i]could,[/i]" but then I hit reality. I realize she wants to [i]be talking on the phone herself,[/i] but that she cannot connect the phone set as it appears in reality with that desire. Of course, the desire itself has to last long enough for any effort to be rewarded. She has a seemingly insurmountable wall between such a desire, and doing the physical things it takes to bring about the thing she wants (in this case, move her hand to the number pad.) In any event, she also opined yesterday that she should have everybody's address... Jenni thought that might be because she has always been so good about sending people cards on birthdays, holidays and the like.
Laura's going to pursue getting a monthly urine culture. She's noticed that antibiotics for infections sometimes result in a much more lucid state, and she's wondering if some of Mom's confusion is linked to UTIs that are coming and going undiagnosed; we'll see. So far she's made no progress on doing even very simple things, and this time a week or two ago I was wondering if she'd spoken with me for the last time (she had one of those days when she did not speak the whole time while I was visiting.) It was like that on my first visit with her Saturday as well, although if you read that entry, you know that she ended the visit with two words (after silence for an hour.)
But it's possible that there are frequent UTIs we don't know about. If so, they can be addressed with yet other antibiotics, and with a catheter to minimize the effects of her current arrangement. We'll see... consistent ability to focus may just be beyond her, or it could be completely within her power, but made that much more difficult because of repeated infections. If she can focus, considering what's important one day to be important the next day, one can take the next step and attempt to teach her to use the call button (that idea went nowhere when I originally seized on it,) and perhaps, eventually, the phone. Even if she could hold it to her own ear for incoming calls, that would be terrific. But one step at a time... if indeed any of it comes to pass.
Dan
Laura's going to pursue getting a monthly urine culture. She's noticed that antibiotics for infections sometimes result in a much more lucid state, and she's wondering if some of Mom's confusion is linked to UTIs that are coming and going undiagnosed; we'll see. So far she's made no progress on doing even very simple things, and this time a week or two ago I was wondering if she'd spoken with me for the last time (she had one of those days when she did not speak the whole time while I was visiting.) It was like that on my first visit with her Saturday as well, although if you read that entry, you know that she ended the visit with two words (after silence for an hour.)
But it's possible that there are frequent UTIs we don't know about. If so, they can be addressed with yet other antibiotics, and with a catheter to minimize the effects of her current arrangement. We'll see... consistent ability to focus may just be beyond her, or it could be completely within her power, but made that much more difficult because of repeated infections. If she can focus, considering what's important one day to be important the next day, one can take the next step and attempt to teach her to use the call button (that idea went nowhere when I originally seized on it,) and perhaps, eventually, the phone. Even if she could hold it to her own ear for incoming calls, that would be terrific. But one step at a time... if indeed any of it comes to pass.
Dan
Saturday, July 2, 2011
Saturday, 7/2/11
Hello again, friends and relatives. Mom was in the dining hall today when I came in this afternoon. There's a big television there, and it's not unusual for her to spend some time there a few times a week. She does not socialize, but she hears the talk around her, and of course the television is always on. I'm not exactly certain that she gets anything out of it, truth be told, but I doubt she'd prefer to be secluded in her room.
I stayed around an hour this afternoon, and tried to talk to her. She looked at me but did not speak to me at all, until I was almost out the door. I said I was going, but that I'd come back later in the day. She surprised me by answering "I'm sorry." I'm thinking it's possible that she's lost a bit of the selective filter most of us have, which allows us to zoom in on a familiar voice that's close by. Or perhaps there was just so much going on there that she was overwhelmed and withdrew. It was truly as if she could not communicate at all. But I also know that she's spent many visits in her room at about the same level of communicativeness. So who knows.
I returned this evening a little before seven, and it was a different story. We traded greetings (a pretty good sign right there,) and I told her a story about our rear passenger side window getting blasted out by a stray rock hurled from a landscaper's weedwacker last week. I told her we'd brought the car in to get the window done, and they'd taken care of it right away. She let me off a hook she may have believed I thought I was on, opining, "Well, you can't do everything."
I asked her if she'd like to call someone, and she answered - I loved this - "I want to call everyone." So, I did try everyone, and reached one friend (Jenni). They had a nice few words together. I asked if she enjoyed the call, and she said "it's a warm gift."
Sometimes I think although she's got far less facility with speaking, some of the things she says are much more poetic. Maybe it's the act of reaching for words that mean the right thing, where most of us simply talk.
In any event, we talked a little more, then I played guitar for her until a little after eight. More tomorrow,
Dan
I stayed around an hour this afternoon, and tried to talk to her. She looked at me but did not speak to me at all, until I was almost out the door. I said I was going, but that I'd come back later in the day. She surprised me by answering "I'm sorry." I'm thinking it's possible that she's lost a bit of the selective filter most of us have, which allows us to zoom in on a familiar voice that's close by. Or perhaps there was just so much going on there that she was overwhelmed and withdrew. It was truly as if she could not communicate at all. But I also know that she's spent many visits in her room at about the same level of communicativeness. So who knows.
I returned this evening a little before seven, and it was a different story. We traded greetings (a pretty good sign right there,) and I told her a story about our rear passenger side window getting blasted out by a stray rock hurled from a landscaper's weedwacker last week. I told her we'd brought the car in to get the window done, and they'd taken care of it right away. She let me off a hook she may have believed I thought I was on, opining, "Well, you can't do everything."
I asked her if she'd like to call someone, and she answered - I loved this - "I want to call everyone." So, I did try everyone, and reached one friend (Jenni). They had a nice few words together. I asked if she enjoyed the call, and she said "it's a warm gift."
Sometimes I think although she's got far less facility with speaking, some of the things she says are much more poetic. Maybe it's the act of reaching for words that mean the right thing, where most of us simply talk.
In any event, we talked a little more, then I played guitar for her until a little after eight. More tomorrow,
Dan
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