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.
Monday, October 31, 2011
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
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