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
Wednesday, November 30, 2011
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.
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