Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Im so very sorry sherry.thank goodness shes doing better now.when are these places gonna acknowledge lbd?and see how different it is?youall are in my thoughts....ron Update on my mom I've been on the phone much of the morning but will spare you all the details (I took up enough of your time last night!) and just share what I've learned so far. First, talked to ; she describes my mother's behavior as " psychotic " . I asked her which specific behaviors concerned her, and everything she said was consistent with an LBDer with a UTI (or other infection, pain, whatever), or with my mother's personality (taking notes and writing everything down which she's done her whole life). NOTHING was what I would consider psychotic. also said that LBDers have a quick and steady decline which they haven't seen in my mother (yet!), and their periods of higher functioning don't last, as my mother's has - it's only been 16 months! I told her that was incorrect, that my mother's cognition fluctuates (which she acknowledged) which is totally typical of LBD, and that people can live for a decade even with LBD. As long as her meds and environment are correct, she will have a better chance of enjoying higher functioning for longer (although it's really up to the disease process of course) than if her treatment and environment were inappropriate. I was left very dissatisfied but said she'd call the hospital in the U.P. and try to get more information, as well as their fax # so that I could send my guardianship paper up there. I want to keep the lines of communication open with as a source of information right now, as well as a good relationship with my mother later, so I didn't let her hear my frustration and yes, even anger, on the phone. Then I called the ombudsman, Sharon, who was WONDERFUL! She took lots of notes, she " got it " - understood exactly what I was saying, and spent 40 minutes on the phone with me. She gave me steps to follow (#1 - get the guardianship paper to the hospital so they'll talk to me; #2 - try to talk to my mother directly to glean any information about inappropriate drugs or whatever; #3 - King's HAS to accept her back, and I have the right to bring her back if I feel she's getting inappropriate treatment...etc.) She also told me that, if I want/need her to, she will get involved in my mother's care planning at King's to ensure that my wishes are followed, and will attend the meetings with me, then follow up to make sure things are going well. That was such a HUGE relief! We discussed other things as well and we'll talk again next week after the holiday. (Michigan state offices are closed tomorrow because the state is broke, but she gave me her cell phone # in case of an emergency where I felt I absolutely had to talk to her.) The main point I brought up was that none of this should have happened, if the UTI had been diagnosed and treated, and her environment wasn't changed - simultaneously yet! Then I called the hospital in the UP to talk to my mom. My mom sounds fine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Sherry, thank you for relieving our minds. You have done all you can so far to resolve this hideous experience. Hopefully any meds they gave your mother to transport her will not affect her long term. I do hope Kings has learned something from all this. What a godsend your ombudsman sounds. What a relief to have support. All the best in what lies ahead. > > I've been on the phone much of the morning but will spare you all the > details (I took up enough of your time last night!) and just share what I've > learned so far. > > First, talked to ; she describes my mother's behavior as > " psychotic " . I asked her which specific behaviors concerned her, and > everything she said was consistent with an LBDer with a UTI (or other > infection, pain, whatever), or with my mother's personality (taking notes > and writing everything down which she's done her whole life). NOTHING was > what I would consider psychotic. > > also said that LBDers have a quick and steady decline which they > haven't seen in my mother (yet!), and their periods of higher functioning > don't last, as my mother's has - it's only been 16 months! I told her that > was incorrect, that my mother's cognition fluctuates (which she > acknowledged) which is totally typical of LBD, and that people can live for > a decade even with LBD. As long as her meds and environment are correct, > she will have a better chance of enjoying higher functioning for longer > (although it's really up to the disease process of course) than if her > treatment and environment were inappropriate. > > I was left very dissatisfied but said she'd call the hospital in > the U.P. and try to get more information, as well as their fax # so that I > could send my guardianship paper up there. I want to keep the lines of > communication open with as a source of information right now, as > well as a good relationship with my mother later, so I didn't let her hear > my frustration and yes, even anger, on the phone. > > Then I called the ombudsman, Sharon, who was WONDERFUL! She took lots of > notes, she " got it " - understood exactly what I was saying, and spent 40 > minutes on the phone with me. She gave me steps to follow (#1 - get the > guardianship paper to the hospital so they'll talk to me; #2 - try to talk > to my mother directly to glean any information about inappropriate drugs or > whatever; #3 - King's HAS to accept her back, and I have the right to bring > her back if I feel she's getting inappropriate treatment...etc.) She also > told me that, if I want/need her to, she will get involved in my mother's > care planning at King's to ensure that my wishes are followed, and will > attend the meetings with me, then follow up to make sure things are going > well. That was such a HUGE relief! We discussed other things as well and > we'll talk again next week after the holiday. (Michigan state offices are > closed tomorrow because the state is broke, but she gave me her cell phone # > in case of an emergency where I felt I absolutely had to talk to her.) The > main point I brought up was that none of this should have happened, if the > UTI had been diagnosed and treated, and her environment wasn't changed - > simultaneously yet! > > Then I called the hospital in the UP to talk to my mom. My mom sounds fine. > 3 days on antibiotics so far and she's back to herself - as always happens > when she has a UTI. None of this was necessary. My mom was happy to hear > from me, the 2 staff that I talked to both told me that she's adorable and a > lot of fun...DUH! That's my mom when she doesn't have a flaring UTI - > definitely NOT " psychotic " . > > After 5 minutes on the phone with her, the nurse talked to me to go over her > meds. No changes in her existing meds but they added ambien and trazodone. > I told her NO AMBIEN and they won't give her anymore. I had to look up > trazodone, after reading several websites I got some general information > about it, and then I saw that Dr. takes 50 mg. at bedtime > without a problem. Of course that doesn't mean that my mother won't have a > problem...but they have her on 100 mg. at bedtime and I'm going to tell them > to cut that back to the minimum dose, even 25 mg (which is almost > ridiculously low) if possible. That's to help her sleep - even though I've > told King's over and over that she's always been a night person, she naps on > and off during the day, and is up reading or doing puzzles or housework or > whatever all night. She's been that way since I was child. So basically > they're drugging her to make her schedule coincide with their preferences. > I need to address that as well, later. > > One thing that nurse told me is that they have her diagnosis down as > Alzheimer's. I corrected them REAL fast, and will be willing to fax copies > of her diagnosis from the neurologists to them, happily. (Good thing my > sister had the foresight to have me get my own copies of all of her > records!) > > So that's what is going on. Like I said, all of this could have been > avoided if the UTI had been treated, and they handled her room change > differently. She still would have been upset and had difficulty adjusting, > but she wouldn't have been, as said, " Psychotic " > > Thanks for listening last night, I was a basket case. I will decide whether > or not to contact an attorney after I see how all of this is resolved. > Everything that happened to her this week was WRONG, totally, and in so many > ways. But with the ombudsman's help I am hoping that we can return to the > status quo that she (and I!) have been enjoying since last winter. > > His, > Sherry s > www.owly.net > daughter of , (mis?)diagnosed with AD in 2005, diagnosed with LBD March > 2008; in a NH, taking Aricept/Namenda, Seroquel, and Effexor for depression. > http://www.facebook.com/SherrysMI - also tweet with the #lewybody > hashtag . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Hey Ron, you all are sounding like a southerner now! That didn't take long. > > Im so very sorry sherry.thank goodness shes doing better now.when are these places gonna acknowledge lbd?and see how different it is?youall are in my thoughts....ron > > Update on my mom > > > I've been on the phone much of the morning but will spare you all the > details (I took up enough of your time last night!) and just share what I've > learned so far. > > First, talked to ; she describes my mother's behavior as > " psychotic " . I asked her which specific behaviors concerned her, and > everything she said was consistent with an LBDer with a UTI (or other > infection, pain, whatever), or with my mother's personality (taking notes > and writing everything down which she's done her whole life). NOTHING was > what I would consider psychotic. > > also said that LBDers have a quick and steady decline which they > haven't seen in my mother (yet!), and their periods of higher functioning > don't last, as my mother's has - it's only been 16 months! I told her that > was incorrect, that my mother's cognition fluctuates (which she > acknowledged) which is totally typical of LBD, and that people can live for > a decade even with LBD. As long as her meds and environment are correct, > she will have a better chance of enjoying higher functioning for longer > (although it's really up to the disease process of course) than if her > treatment and environment were inappropriate. > > I was left very dissatisfied but said she'd call the hospital in > the U.P. and try to get more information, as well as their fax # so that I > could send my guardianship paper up there. I want to keep the lines of > communication open with as a source of information right now, as > well as a good relationship with my mother later, so I didn't let her hear > my frustration and yes, even anger, on the phone. > > Then I called the ombudsman, Sharon, who was WONDERFUL! She took lots of > notes, she " got it " - understood exactly what I was saying, and spent 40 > minutes on the phone with me. She gave me steps to follow (#1 - get the > guardianship paper to the hospital so they'll talk to me; #2 - try to talk > to my mother directly to glean any information about inappropriate drugs or > whatever; #3 - King's HAS to accept her back, and I have the right to bring > her back if I feel she's getting inappropriate treatment...etc.) She also > told me that, if I want/need her to, she will get involved in my mother's > care planning at King's to ensure that my wishes are followed, and will > attend the meetings with me, then follow up to make sure things are going > well. That was such a HUGE relief! We discussed other things as well and > we'll talk again next week after the holiday. (Michigan state offices are > closed tomorrow because the state is broke, but she gave me her cell phone # > in case of an emergency where I felt I absolutely had to talk to her.) The > main point I brought up was that none of this should have happened, if the > UTI had been diagnosed and treated, and her environment wasn't changed - > simultaneously yet! > > Then I called the hospital in the UP to talk to my mom. My mom sounds fine > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Sherry, Those nurses overreacted to a stressful situation, instead of acting. They should have called you, and you would have reminded them the hundredth time to check for the UTI. It is amazing how little they know about their patients, or their diseases. I am so happy to hear that your Mom was normal. And, that the NH has to take her back. I didn't know that one either. Yes, money talks. That is sad. People are not treated equally. Hope you get better soon. Love with a smile, Imogene Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005. And then, with LBD 2006. A happy personality is contagious. Infect someone today. Yours Truly In a message dated 9/3/2009 12:34:27 P.M. Central Daylight Time, upnorth@... writes: I've been on the phone much of the morning but will spare you all the details (I took up enough of your time last night!) and just share what I've learned so far. First, talked to ; she describes my mother's behavior as " psychotic " . I asked her which specific behaviors concerned her, and everything she said was consistent with an LBDer with a UTI (or other infection, pain, whatever), or with my mother's personality (taking notes and writing everything down which she's done her whole life). NOTHING was what I would consider psychotic. also said that LBDers have a quick and steady decline which they haven't seen in my mother (yet!), and their periods of higher functioning don't last, as my mother's has - it's only been 16 months! I told her that was incorrect, that my mother's cognition fluctuates (which she acknowledged) which is totally typical of LBD, and that people can live for a decade even with LBD. As long as her meds and environment are correct, she will have a better chance of enjoying higher functioning for longer (although it's really up to the disease process of course) than if her treatment and environment were inappropriate. I was left very dissatisfied but said she'd call the hospital in the U.P. and try to get more information, as well as their fax # so that I could send my guardianship paper up there. I want to keep the lines of communication open with as a source of information right now, as well as a good relationship with my mother later, so I didn't let her hear my frustration and yes, even anger, on the phone. Then I called the ombudsman, Sharon, who was WONDERFUL! She took lots of notes, she " got it " - understood exactly what I was saying, and spent 40 minutes on the phone with me. She gave me steps to follow (#1 - get the guardianship paper to the hospital so they'll talk to me; #2 - try to talk to my mother directly to glean any information about inappropriate drugs or whatever; #3 - King's HAS to accept her back, and I have the right to bring her back if I feel she's getting inappropriate treatment...etc.) She also told me that, if I want/need her to, she will get involved in my mother's care planning at King's to ensure that my wishes are followed, and will attend the meetings with me, then follow up to make sure things are going well. That was such a HUGE relief! We discussed other things as well and we'll talk again next week after the holiday. (Michigan state offices are closed tomorrow because the state is broke, but she gave me her cell phone # in case of an emergency where I felt I absolutely had to talk to her.) The main point I brought up was that none of this should have happened, if the UTI had been diagnosed and treated, and her environment wasn't changed - simultaneously yet! Then I called the hospital in the UP to talk to my mom. My mom sounds fine. 3 days on antibiotics so far and she's back to herself - as always happens when she has a UTI. None of this was necessary. My mom was happy to hear from me, the 2 staff that I talked to both told me that she's adorable and a lot of fun...DUH! That's my mom when she doesn't have a flaring UTI - definitely NOT " psychotic " . After 5 minutes on the phone with her, the nurse talked to me to go over her meds. No changes in her existing meds but they added ambien and trazodone. I told her NO AMBIEN and they won't give her anymore. I had to look up trazodone, after reading several websites I got some general information about it, and then I saw that Dr. takes 50 mg. at bedtime without a problem. Of course that doesn't mean that my mother won't have a problem...but they have her on 100 mg. at bedtime and I'm going to tell them to cut that back to the minimum dose, even 25 mg (which is almost ridiculously low) if possible. That's to help her sleep - even though I've told King's over and over that she's always been a night person, she naps on and off during the day, and is up reading or doing puzzles or housework or whatever all night. She's been that way since I was child. So basically they're drugging her to make her schedule coincide with their preferences. I need to address that as well, later. One thing that nurse told me is that they have her diagnosis down as Alzheimer's. I corrected them REAL fast, and will be willing to fax copies of her diagnosis from the neurologists to them, happily. (Good thing my sister had the foresight to have me get my own copies of all of her records!) So that's what is going on. Like I said, all of this could have been avoided if the UTI had been treated, and they handled her room change differently. She still would have been upset and had difficulty adjusting, but she wouldn't have been, as said, " Psychotic " Thanks for listening last night, I was a basket case. I will decide whether or not to contact an attorney after I see how all of this is resolved. Everything that happened to her this week was WRONG, totally, and in so many ways. But with the ombudsman's help I am hoping that we can return to the status quo that she (and I!) have been enjoying since last winter. His, Sherry s www.owly.net daughter of , (mis?)diagnosed with AD in 2005, diagnosed with LBD March 2008; in a NH, taking Aricept/Namenda, Seroquel, and Effexor for depression. http://www.facebook.com/SherrysMI - also tweet with the #lewybody hashtag . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Dear Sherry, Glad to hear that things are calming down,a nd that your MOm is better! It sounds like you had a productive day indeed. And how are YOU feeling? Hugs from NY, Helene > > I've been on the phone much of the morning but will spare you all the > details (I took up enough of your time last night!) and just share what I've > learned so far. > > First, talked to ; she describes my mother's behavior as > " psychotic " . I asked her which specific behaviors concerned her, and > everything she said was consistent with an LBDer with a UTI (or other > infection, pain, whatever), or with my mother's personality (taking notes > and writing everything down which she's done her whole life). NOTHING was > what I would consider psychotic. > > also said that LBDers have a quick and steady decline which they > haven't seen in my mother (yet!), and their periods of higher functioning > don't last, as my mother's has - it's only been 16 months! I told her that > was incorrect, that my mother's cognition fluctuates (which she > acknowledged) which is totally typical of LBD, and that people can live for > a decade even with LBD. As long as her meds and environment are correct, > she will have a better chance of enjoying higher functioning for longer > (although it's really up to the disease process of course) than if her > treatment and environment were inappropriate. > > I was left very dissatisfied but said she'd call the hospital in > the U.P. and try to get more information, as well as their fax # so that I > could send my guardianship paper up there. I want to keep the lines of > communication open with as a source of information right now, as > well as a good relationship with my mother later, so I didn't let her hear > my frustration and yes, even anger, on the phone. > > Then I called the ombudsman, Sharon, who was WONDERFUL! She took lots of > notes, she " got it " - understood exactly what I was saying, and spent 40 > minutes on the phone with me. She gave me steps to follow (#1 - get the > guardianship paper to the hospital so they'll talk to me; #2 - try to talk > to my mother directly to glean any information about inappropriate drugs or > whatever; #3 - King's HAS to accept her back, and I have the right to bring > her back if I feel she's getting inappropriate treatment...etc.) She also > told me that, if I want/need her to, she will get involved in my mother's > care planning at King's to ensure that my wishes are followed, and will > attend the meetings with me, then follow up to make sure things are going > well. That was such a HUGE relief! We discussed other things as well and > we'll talk again next week after the holiday. (Michigan state offices are > closed tomorrow because the state is broke, but she gave me her cell phone # > in case of an emergency where I felt I absolutely had to talk to her.) The > main point I brought up was that none of this should have happened, if the > UTI had been diagnosed and treated, and her environment wasn't changed - > simultaneously yet! > > Then I called the hospital in the UP to talk to my mom. My mom sounds fine. > 3 days on antibiotics so far and she's back to herself - as always happens > when she has a UTI. None of this was necessary. My mom was happy to hear > from me, the 2 staff that I talked to both told me that she's adorable and a > lot of fun...DUH! That's my mom when she doesn't have a flaring UTI - > definitely NOT " psychotic " . > > After 5 minutes on the phone with her, the nurse talked to me to go over her > meds. No changes in her existing meds but they added ambien and trazodone. > I told her NO AMBIEN and they won't give her anymore. I had to look up > trazodone, after reading several websites I got some general information > about it, and then I saw that Dr. takes 50 mg. at bedtime > without a problem. Of course that doesn't mean that my mother won't have a > problem...but they have her on 100 mg. at bedtime and I'm going to tell them > to cut that back to the minimum dose, even 25 mg (which is almost > ridiculously low) if possible. That's to help her sleep - even though I've > told King's over and over that she's always been a night person, she naps on > and off during the day, and is up reading or doing puzzles or housework or > whatever all night. She's been that way since I was child. So basically > they're drugging her to make her schedule coincide with their preferences. > I need to address that as well, later. > > One thing that nurse told me is that they have her diagnosis down as > Alzheimer's. I corrected them REAL fast, and will be willing to fax copies > of her diagnosis from the neurologists to them, happily. (Good thing my > sister had the foresight to have me get my own copies of all of her > records!) > > So that's what is going on. Like I said, all of this could have been > avoided if the UTI had been treated, and they handled her room change > differently. She still would have been upset and had difficulty adjusting, > but she wouldn't have been, as said, " Psychotic " > > Thanks for listening last night, I was a basket case. I will decide whether > or not to contact an attorney after I see how all of this is resolved. > Everything that happened to her this week was WRONG, totally, and in so many > ways. But with the ombudsman's help I am hoping that we can return to the > status quo that she (and I!) have been enjoying since last winter. > > His, > Sherry s > www.owly.net > daughter of , (mis?)diagnosed with AD in 2005, diagnosed with LBD March > 2008; in a NH, taking Aricept/Namenda, Seroquel, and Effexor for depression. > http://www.facebook.com/SherrysMI - also tweet with the #lewybody > hashtag . > Quote Link to comment Share on other sites More sharing options...
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