Guest guest Posted December 22, 2011 Report Share Posted December 22, 2011 I am so sorry to hear about this treatment of your mother. Many of those medications you mention are not supposed to be used in treating LBD. You need to get your Mom out of that hospital and to Mayo Clinic or some really good medical center that KNOWS how to treat LBD, or you may soon lose her I fear. This is just terrible! May I ask where and what hospital she is in? Please get your mother to a better place. Haldol and methadone especially are very bad and can do harm that can be irreversible. You say you talked with someone from Mayo Clinic. Can you take your Mother there right away? Prayers are with you and your Mom, Pat M. > ** > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > and she has remained in the Hospital. It has been 20 days now and she is > still declining. She walked into the hospital and was talking and had been > taking care of her self. She was hospitalized for hallusenations. She was > put on many psych meds and ativan, tylenol and methadone. She is now in > Hospice and they have dc'd everything except pain meds. I have asked for a > second opinion and want her transfered before they kill her. I'm at whits > end not knowing what to do. any suggestions. The doctors say that she has > declined fast for some reason but they do not know. I talked to someone > from Mayo and they had never head of anyone being diagnosed and dying in 20 > days. A list of meds that she has been on and some at the same time: > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > morphine methadone tylenol She may have been given more. Freda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2011 Report Share Posted December 22, 2011 Hello and welcome Freda, I am shocked by this list of meds. Why on earth are they giving her all these meds? I am not surprised at all that your mom is doing so poorly. Respirdol and ativan are two meds in particular that people with LBD are very sensitive too. I can’t understand why they are giving her so many different anti-psychotics??? Seroquel should be more than enough and many of our loved ones do well on it on a low dose. Why are they giving her a muscle relaxant? We have to be careful with these meds too. If I were you, I would insist that they take her off all meds pronto and after she has stabilized to re-introduce a very low dose (my mom used to take only half a starter dose) of the seroquel. In fact, I would get them to print me out a list of all the meds they have given her and get her the heck out of there and into another hospital that will not drug her up and will watch over her while she is weaned off these meds. Sending you and your much much strength. Courage From: Freda Sent: Thursday, December 22, 2011 8:21 PM To: LBDcaregivers Subject: drugs used to treat Hi I need more information on my mother who was diagnosed Dec. 2 with lbd and she has remained in the Hospital. It has been 20 days now and she is still declining. She walked into the hospital and was talking and had been taking care of her self. She was hospitalized for hallusenations. She was put on many psych meds and ativan, tylenol and methadone. She is now in Hospice and they have dc'd everything except pain meds. I have asked for a second opinion and want her transfered before they kill her. I'm at whits end not knowing what to do. any suggestions. The doctors say that she has declined fast for some reason but they do not know. I talked to someone from Mayo and they had never head of anyone being diagnosed and dying in 20 days. A list of meds that she has been on and some at the same time: Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope morphine methadone tylenol She may have been given more. Freda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 She is at Community Hospital East in Indianapolis. She walked in and now she is bed-ridden, can't feed herself, in continent, in Hospice dieing. How can I make them listen to me about the drugs ________________________________ To: LBDcaregivers Sent: Friday, December 23, 2011 12:40 AM Subject: Re: drugs used to treat I am so sorry to hear about this treatment of your mother. Many of those medications you mention are not supposed to be used in treating LBD. You need to get your Mom out of that hospital and to Mayo Clinic or some really good medical center that KNOWS how to treat LBD, or you may soon lose her I fear. This is just terrible! May I ask where and what hospital she is in? Please get your mother to a better place. Haldol and methadone especially are very bad and can do harm that can be irreversible. You say you talked with someone from Mayo Clinic. Can you take your Mother there right away? Prayers are with you and your Mom, Pat M. > ** > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > and she has remained in the Hospital. It has been 20 days now and she is > still declining. She walked into the hospital and was talking and had been > taking care of her self. She was hospitalized for hallusenations. She was > put on many psych meds and ativan, tylenol and methadone. She is now in > Hospice and they have dc'd everything except pain meds. I have asked for a > second opinion and want her transfered before they kill her. I'm at whits > end not knowing what to do. any suggestions. The doctors say that she has > declined fast for some reason but they do not know. I talked to someone > from Mayo and they had never head of anyone being diagnosed and dying in 20 > days. A list of meds that she has been on and some at the same time: > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > morphine methadone tylenol She may have been given more. Freda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 Dear Freda, Most of these are on the list of medications that people with LBD should NOT be given - ever, and it seems like they gave her many of them! You need to make sure she is taken off all these meds immediately, and try to take her somewhere with a neurologist or neurospychologist that knows about LBD. What area are you in? Good luck, Helene in NY > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd and she has remained in the Hospital. It has been 20 days now and she is still declining. She walked into the hospital and was talking and had been taking care of her self. She was hospitalized for hallusenations. She was put on many psych meds and ativan, tylenol and methadone. She is now in Hospice and they have dc'd everything except pain meds. I have asked for a second opinion and want her transfered before they kill her. I'm at whits end not knowing what to do. any suggestions. The doctors say that she has declined fast for some reason but they do not know. I talked to someone from Mayo and they had never head of anyone being diagnosed and dying in 20 days. A list of meds that she has been on and some at the same time: Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope morphine methadone tylenol She may have been given more. Freda > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 Do you have the Power of attorney for healthcare for your Mom? Or are you the only relative caring for her? That should give you the standing to say NO to all of these medications on her behalf. Have a meeting with the doctors immediately and tell them to stop giving her these bad meds. If you are the power of attorney you have the right to sign her out of there and take her to Mayo or another hospital. If you are the only relative speaking on her behalf they have to listen to you. If you have siblings or other relatives involved in her care decisions you have to meet with them and come to an agreement about what to do. Best wishes. You are in my thoughts and prayers, Pat M. > ** > > > She is at Community Hospital East in Indianapolis. She walked in and now > she is bed-ridden, can't feed herself, in continent, in Hospice dieing. How > can I make them listen to me about the drugs > > ________________________________ > > To: LBDcaregivers > Sent: Friday, December 23, 2011 12:40 AM > Subject: Re: drugs used to treat > > > I am so sorry to hear about this treatment of your mother. Many of those > medications you mention are not supposed to be used in treating LBD. You > need to get your Mom out of that hospital and to Mayo Clinic or some really > good medical center that KNOWS how to treat LBD, or you may soon lose her I > fear. This is just terrible! May I ask where and what hospital she is > in? Please get your mother to a better place. Haldol and methadone > especially are very bad and can do harm that can be irreversible. You say > you talked with someone from Mayo Clinic. Can you take your Mother there > right away? > Prayers are with you and your Mom, > Pat M. > > > > > ** > > > > > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > > and she has remained in the Hospital. It has been 20 days now and she is > > still declining. She walked into the hospital and was talking and had > been > > taking care of her self. She was hospitalized for hallusenations. She was > > put on many psych meds and ativan, tylenol and methadone. She is now in > > Hospice and they have dc'd everything except pain meds. I have asked for > a > > second opinion and want her transfered before they kill her. I'm at whits > > end not knowing what to do. any suggestions. The doctors say that she has > > declined fast for some reason but they do not know. I talked to someone > > from Mayo and they had never head of anyone being diagnosed and dying in > 20 > > days. A list of meds that she has been on and some at the same time: > > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > > morphine methadone tylenol She may have been given more. Freda > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 Can you print the bad meds list and give it to them? You will need to advocate for you mom and insist that they stop all meds now. Even with the right meds our loved ones continue to have hallucinations. I see no reason to drug her like this. Best of luck to you and your mom. Courage From: Freda Hodson Sent: Friday, December 23, 2011 7:02 AM To: LBDcaregivers Subject: Re: drugs used to treat She is at Community Hospital East in Indianapolis. She walked in and now she is bed-ridden, can't feed herself, in continent, in Hospice dieing. How can I make them listen to me about the drugs ________________________________ From: Mayhew <mailto:pmayhew53%40gmail.com> To: mailto:LBDcaregivers%40yahoogroups.com Sent: Friday, December 23, 2011 12:40 AM Subject: Re: drugs used to treat I am so sorry to hear about this treatment of your mother. Many of those medications you mention are not supposed to be used in treating LBD. You need to get your Mom out of that hospital and to Mayo Clinic or some really good medical center that KNOWS how to treat LBD, or you may soon lose her I fear. This is just terrible! May I ask where and what hospital she is in? Please get your mother to a better place. Haldol and methadone especially are very bad and can do harm that can be irreversible. You say you talked with someone from Mayo Clinic. Can you take your Mother there right away? Prayers are with you and your Mom, Pat M. On Thu, Dec 22, 2011 at 7:21 PM, Freda <mailto:fredahodson%40yahoo.com> wrote: > ** > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > and she has remained in the Hospital. It has been 20 days now and she is > still declining. She walked into the hospital and was talking and had been > taking care of her self. She was hospitalized for hallusenations. She was > put on many psych meds and ativan, tylenol and methadone. She is now in > Hospice and they have dc'd everything except pain meds. I have asked for a > second opinion and want her transfered before they kill her. I'm at whits > end not knowing what to do. any suggestions. The doctors say that she has > declined fast for some reason but they do not know. I talked to someone > from Mayo and they had never head of anyone being diagnosed and dying in 20 > days. A list of meds that she has been on and some at the same time: > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > morphine methadone tylenol She may have been given more. Freda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 I did give them the list and he said are they doctors? I " m having her transfered to IU when a doctor will take her and a bed is ready. I know that all my mom's problems started when she was given so many psychotic drugs while trying to manage her hallucinations. ________________________________ To: LBDcaregivers Sent: Friday, December 23, 2011 10:07 AM Subject: Re: drugs used to treat  Can you print the bad meds list and give it to them? You will need to advocate for you mom and insist that they stop all meds now. Even with the right meds our loved ones continue to have hallucinations. I see no reason to drug her like this. Best of luck to you and your mom. Courage From: Freda Hodson Sent: Friday, December 23, 2011 7:02 AM To: LBDcaregivers Subject: Re: drugs used to treat She is at Community Hospital East in Indianapolis. She walked in and now she is bed-ridden, can't feed herself, in continent, in Hospice dieing. How can I make them listen to me about the drugs ________________________________ From: Mayhew <mailto:pmayhew53%40gmail.com> To: mailto:LBDcaregivers%40yahoogroups.com Sent: Friday, December 23, 2011 12:40 AM Subject: Re: drugs used to treat I am so sorry to hear about this treatment of your mother. Many of those medications you mention are not supposed to be used in treating LBD. You need to get your Mom out of that hospital and to Mayo Clinic or some really good medical center that KNOWS how to treat LBD, or you may soon lose her I fear. This is just terrible! May I ask where and what hospital she is in? Please get your mother to a better place. Haldol and methadone especially are very bad and can do harm that can be irreversible. You say you talked with someone from Mayo Clinic. Can you take your Mother there right away? Prayers are with you and your Mom, Pat M. On Thu, Dec 22, 2011 at 7:21 PM, Freda <mailto:fredahodson%40yahoo.com> wrote: > ** > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > and she has remained in the Hospital. It has been 20 days now and she is > still declining. She walked into the hospital and was talking and had been > taking care of her self. She was hospitalized for hallusenations. She was > put on many psych meds and ativan, tylenol and methadone. She is now in > Hospice and they have dc'd everything except pain meds. I have asked for a > second opinion and want her transfered before they kill her. I'm at whits > end not knowing what to do. any suggestions. The doctors say that she has > declined fast for some reason but they do not know. I talked to someone > from Mayo and they had never head of anyone being diagnosed and dying in 20 > days. A list of meds that she has been on and some at the same time: > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > morphine methadone tylenol She may have been given more. Freda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 when my mom was put into hospice on wed. it was because we asked them to dc all drugs to get her system clear. Now all they will do is keep her comfortable with ativan and methone 2 mg contant. They took out all iv's and ports. She is not eating much or drinking. I have 7 brothers and sisters and my brother has power of attorney. I have finally convinced him that she needs to go somewhere else. I'm waiting on IU to respond with bed. ________________________________ To: LBDcaregivers Sent: Friday, December 23, 2011 10:06 AM Subject: Re: drugs used to treat Do you have the Power of attorney for healthcare for your Mom? Or are you the only relative caring for her? That should give you the standing to say NO to all of these medications on her behalf. Have a meeting with the doctors immediately and tell them to stop giving her these bad meds. If you are the power of attorney you have the right to sign her out of there and take her to Mayo or another hospital. If you are the only relative speaking on her behalf they have to listen to you. If you have siblings or other relatives involved in her care decisions you have to meet with them and come to an agreement about what to do. Best wishes. You are in my thoughts and prayers, Pat M. > ** > > > She is at Community Hospital East in Indianapolis. She walked in and now > she is bed-ridden, can't feed herself, in continent, in Hospice dieing. How > can I make them listen to me about the drugs > > ________________________________ > > To: LBDcaregivers > Sent: Friday, December 23, 2011 12:40 AM > Subject: Re: drugs used to treat > > > I am so sorry to hear about this treatment of your mother. Many of those > medications you mention are not supposed to be used in treating LBD. You > need to get your Mom out of that hospital and to Mayo Clinic or some really > good medical center that KNOWS how to treat LBD, or you may soon lose her I > fear. This is just terrible! May I ask where and what hospital she is > in? Please get your mother to a better place. Haldol and methadone > especially are very bad and can do harm that can be irreversible. You say > you talked with someone from Mayo Clinic. Can you take your Mother there > right away? > Prayers are with you and your Mom, > Pat M. > > > > > ** > > > > > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > > and she has remained in the Hospital. It has been 20 days now and she is > > still declining. She walked into the hospital and was talking and had > been > > taking care of her self. She was hospitalized for hallusenations. She was > > put on many psych meds and ativan, tylenol and methadone. She is now in > > Hospice and they have dc'd everything except pain meds. I have asked for > a > > second opinion and want her transfered before they kill her. I'm at whits > > end not knowing what to do. any suggestions. The doctors say that she has > > declined fast for some reason but they do not know. I talked to someone > > from Mayo and they had never head of anyone being diagnosed and dying in > 20 > > days. A list of meds that she has been on and some at the same time: > > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > > morphine methadone tylenol She may have been given more. Freda > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 One of the two lists I circulate of no-no meds for LBDers is that written in 2007 by Dr. Jay Van Gerpen, a neurologist. You can find the list here: http://community.lbda.org/forum/viewtopic.php?p=926#p926 The other one is the LBDA Wallet Card but that's not written as a no-no list. It's written as a " better not to give unless nothing else is available " list. You can find the wallet card on lbda.org. > > I did give them the list and he said are they doctors? I " m having her transfered to IUÂ when a doctor will take her and a bed is ready. I know that all my mom's problems started when she was given so many psychotic drugs while trying to manage her hallucinations. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 Hi Freda Is your brother now up on the drugs to avoid list too? I would suggest that you both make an appt with the hospital administrator and bring the list and other medical info and a written instruction that the methadone and ativan be decreased as rapidly as possible. That physical therapy should be started also. My mil's neuro had her taking a gram of tylenol every 6 hours to manage pain. Later we added ibuprofen which helped a lot. She may need something for anxiety or agitation but there are other drugs that can be tried as well that may be much better. Look up " neuroleptic syndrome " and show the connection with this, LBD, and these drugs this incompetent doctor has been experimenting on your mother with. If I were in your shoes I would insist this doctor not have anything further to do with her care and that the hospital locate someone knowledgeable before she suffers any further. I would ask that a plan for her recovery from this drug induced minimally functioning state be made and Implementing in the meantime while she waits a bed at IU. I think if you and you brother can present a united stand on this you will see some immediate improvement. I sure hope do. My mother in law has two appointed medical POAs - myself and my husband. This way there has always.been someone to keep an eye on her and anything they might try giving her. Things when she had to go to a hospital for something. I have had some heated arguments over drugs with doctors that think they know it all. I hope at IU she can be properly evaluated. Hang in there and your brother too. -Dorothy from cell phone > when my mom was put into hospice on wed. it was because we asked them to dc all drugs to get her system clear. Now all they will do is keep her comfortable with ativan and methone 2 mg contant. They took out all iv's and ports. She is not eating much or drinking. I have 7 brothers and sisters and my brother has power of attorney. I have finally convinced him that she needs to go somewhere else. I'm waiting on IU to respond with bed. > > ________________________________ > > To: LBDcaregivers > Sent: Friday, December 23, 2011 10:06 AM > Subject: Re: drugs used to treat > > Do you have the Power of attorney for healthcare for your Mom? Or are you > the only relative caring for her? That should give you the standing to say > NO to all of these medications on her behalf. Have a meeting with the > doctors immediately and tell them to stop giving her these bad meds. If > you are the power of attorney you have the right to sign her out of there > and take her to Mayo or another hospital. If you are the only relative > speaking on her behalf they have to listen to you. If you have siblings or > other relatives involved in her care decisions you have to meet with them > and come to an agreement about what to do. Best wishes. > You are in my thoughts and prayers, > Pat M. > > > > > ** > > > > > > She is at Community Hospital East in Indianapolis. She walked in and now > > she is bed-ridden, can't feed herself, in continent, in Hospice dieing. How > > can I make them listen to me about the drugs > > > > ________________________________ > > > > To: LBDcaregivers > > Sent: Friday, December 23, 2011 12:40 AM > > Subject: Re: drugs used to treat > > > > > > I am so sorry to hear about this treatment of your mother. Many of those > > medications you mention are not supposed to be used in treating LBD. You > > need to get your Mom out of that hospital and to Mayo Clinic or some really > > good medical center that KNOWS how to treat LBD, or you may soon lose her I > > fear. This is just terrible! May I ask where and what hospital she is > > in? Please get your mother to a better place. Haldol and methadone > > especially are very bad and can do harm that can be irreversible. You say > > you talked with someone from Mayo Clinic. Can you take your Mother there > > right away? > > Prayers are with you and your Mom, > > Pat M. > > > > > > > > > ** > > > > > > > > > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > > > and she has remained in the Hospital. It has been 20 days now and she is > > > still declining. She walked into the hospital and was talking and had > > been > > > taking care of her self. She was hospitalized for hallusenations. She was > > > put on many psych meds and ativan, tylenol and methadone. She is now in > > > Hospice and they have dc'd everything except pain meds. I have asked for > > a > > > second opinion and want her transfered before they kill her. I'm at whits > > > end not knowing what to do. any suggestions. The doctors say that she has > > > declined fast for some reason but they do not know. I talked to someone > > > from Mayo and they had never head of anyone being diagnosed and dying in > > 20 > > > days. A list of meds that she has been on and some at the same time: > > > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > > > morphine methadone tylenol She may have been given more. Freda > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2011 Report Share Posted December 24, 2011 my brother is a yes man to all the doctors. my mom's condition took a turn for the worst night Hospice was called in and I asked for an IV and they refused. They said that they are going to let nature take its course. My mom developed a sore throat, possible uti and dehydrated and possible shingles. She had been up all day with me eating and drinking and laughing. her mind is in tact. She just kept telling me that she didn't feel right and her throat hurt My mom is fully aware of everything that is going on she just cannot feed herself or walk anymore since the bad drugs. She was supposed to get transfered out yesterday and we were told that we were waiting on a bed. They lied they were not looking for a bed just waiting for her to die and to pacify me. They treatened me that if I took off hospice and moved her that i would owe the bill for the hospital. They said IU would not take my mom if we showed up at the emergency with her without a doctor. Her hospice neuro said he would not help with a doctor replacement because of being accused of a monoply. Is there any one in inpls that will help me before they kill her ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Friday, December 23, 2011 10:58 PM Subject: Re: drugs used to treat  Hi Freda Is your brother now up on the drugs to avoid list too? I would suggest that you both make an appt with the hospital administrator and bring the list and other medical info and a written instruction that the methadone and ativan be decreased as rapidly as possible. That physical therapy should be started also. My mil's neuro had her taking a gram of tylenol every 6 hours to manage pain. Later we added ibuprofen which helped a lot. She may need something for anxiety or agitation but there are other drugs that can be tried as well that may be much better. Look up " neuroleptic syndrome " and show the connection with this, LBD, and these drugs this incompetent doctor has been experimenting on your mother with. If I were in your shoes I would insist this doctor not have anything further to do with her care and that the hospital locate someone knowledgeable before she suffers any further. I would ask that a plan for her recovery from this drug induced minimally functioning state be made and Implementing in the meantime while she waits a bed at IU. I think if you and you brother can present a united stand on this you will see some immediate improvement. I sure hope do. My mother in law has two appointed medical POAs - myself and my husband. This way there has always.been someone to keep an eye on her and anything they might try giving her. Things when she had to go to a hospital for something. I have had some heated arguments over drugs with doctors that think they know it all. I hope at IU she can be properly evaluated. Hang in there and your brother too. -Dorothy from cell phone > when my mom was put into hospice on wed. it was because we asked them to dc all drugs to get her system clear. Now all they will do is keep her comfortable with ativan and methone 2 mg contant. They took out all iv's and ports. She is not eating much or drinking. I have 7 brothers and sisters and my brother has power of attorney. I have finally convinced him that she needs to go somewhere else. I'm waiting on IU to respond with bed. > > ________________________________ > > To: LBDcaregivers > Sent: Friday, December 23, 2011 10:06 AM > Subject: Re: drugs used to treat > > Do you have the Power of attorney for healthcare for your Mom? Or are you > the only relative caring for her? That should give you the standing to say > NO to all of these medications on her behalf. Have a meeting with the > doctors immediately and tell them to stop giving her these bad meds. If > you are the power of attorney you have the right to sign her out of there > and take her to Mayo or another hospital. If you are the only relative > speaking on her behalf they have to listen to you. If you have siblings or > other relatives involved in her care decisions you have to meet with them > and come to an agreement about what to do. Best wishes. > You are in my thoughts and prayers, > Pat M. > > > > > ** > > > > > > She is at Community Hospital East in Indianapolis. She walked in and now > > she is bed-ridden, can't feed herself, in continent, in Hospice dieing. How > > can I make them listen to me about the drugs > > > > ________________________________ > > > > To: LBDcaregivers > > Sent: Friday, December 23, 2011 12:40 AM > > Subject: Re: drugs used to treat > > > > > > I am so sorry to hear about this treatment of your mother. Many of those > > medications you mention are not supposed to be used in treating LBD. You > > need to get your Mom out of that hospital and to Mayo Clinic or some really > > good medical center that KNOWS how to treat LBD, or you may soon lose her I > > fear. This is just terrible! May I ask where and what hospital she is > > in? Please get your mother to a better place. Haldol and methadone > > especially are very bad and can do harm that can be irreversible. You say > > you talked with someone from Mayo Clinic. Can you take your Mother there > > right away? > > Prayers are with you and your Mom, > > Pat M. > > > > > > > > > ** > > > > > > > > > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > > > and she has remained in the Hospital. It has been 20 days now and she is > > > still declining. She walked into the hospital and was talking and had > > been > > > taking care of her self. She was hospitalized for hallusenations. She was > > > put on many psych meds and ativan, tylenol and methadone. She is now in > > > Hospice and they have dc'd everything except pain meds. I have asked for > > a > > > second opinion and want her transfered before they kill her. I'm at whits > > > end not knowing what to do. any suggestions. The doctors say that she has > > > declined fast for some reason but they do not know. I talked to someone > > > from Mayo and they had never head of anyone being diagnosed and dying in > > 20 > > > days. A list of meds that she has been on and some at the same time: > > > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > > > morphine methadone tylenol She may have been given more. Freda > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2011 Report Share Posted December 24, 2011 How awful for you. If you truly want to do anything about this situation you must convince your brother. Or you will have to get an elder law attorney and fight your brother to get legal control of the power of attorney. This is just terrible. It will take time and in the interim you Mom may die. Praying for you, Pat M. > ** > > > my brother is a yes man to all the doctors. my mom's condition took a turn > for the worst night Hospice was called in and I asked for an IV and they > refused. They said that they are going to let nature take its course. My > mom developed a sore throat, possible uti and dehydrated and possible > shingles. She had been up all day with me eating and drinking and > laughing. her mind is in tact. She just kept telling me that she didn't > feel right and her throat hurt My mom is fully aware of everything that is > going on she just cannot feed herself or walk anymore since the bad drugs. > She was supposed to get transfered out yesterday and we were told that we > were waiting on a bed. They lied they were not looking for a bed just > waiting for her to die and to pacify me. They treatened me that if I took > off hospice and moved her that i would owe the bill for the hospital. They > said IU would not take my mom if we showed up at the emergency with her > without a > doctor. Her hospice neuro said he would not help with a doctor replacement > because of being accused of a monoply. Is there any one in inpls that will > help me before they kill her > > ________________________________ > > To: " LBDcaregivers " <LBDcaregivers > > Sent: Friday, December 23, 2011 10:58 PM > > Subject: Re: drugs used to treat > > > > Hi Freda > Is your brother now up on the drugs to avoid list too? I would suggest > that you both make an appt with the hospital administrator and bring the > list and other medical info and a written instruction that the methadone > and ativan be decreased as rapidly as possible. That physical therapy > should be started also. My mil's neuro had her taking a gram of tylenol > every 6 hours to manage pain. Later we added ibuprofen which helped a lot. > > She may need something for anxiety or agitation but there are other drugs > that can be tried as well that may be much better. > > Look up " neuroleptic syndrome " and show the connection with this, LBD, and > these drugs this incompetent doctor has been experimenting on your mother > with. If I were in your shoes I would insist this doctor not have anything > further to do with her care and that the hospital locate someone > knowledgeable before she suffers any further. I would ask that a plan for > her recovery from this drug induced minimally functioning state be made and > Implementing in the meantime while she waits a bed at IU. I think if you > and you brother can present a united stand on this you will see some > immediate improvement. I sure hope do. My mother in law has two appointed > medical POAs - myself and my husband. This way there has always.been > someone to keep an eye on her and anything they might try giving her. > Things when she had to go to a hospital for something. I have had some > heated arguments over drugs with doctors that think they know it all. I > hope at IU she can be properly evaluated. Hang in there and your brother > too. > > -Dorothy > from cell phone > > > > > when my mom was put into hospice on wed. it was because we asked them to > dc all drugs to get her system clear. Now all they will do is keep her > comfortable with ativan and methone 2 mg contant. They took out all iv's > and ports. She is not eating much or drinking. I have 7 brothers and > sisters and my brother has power of attorney. I have finally convinced him > that she needs to go somewhere else. I'm waiting on IU to respond with bed. > > > > ________________________________ > > > > To: LBDcaregivers > > Sent: Friday, December 23, 2011 10:06 AM > > Subject: Re: drugs used to treat > > > > Do you have the Power of attorney for healthcare for your Mom? Or are you > > the only relative caring for her? That should give you the standing to > say > > NO to all of these medications on her behalf. Have a meeting with the > > doctors immediately and tell them to stop giving her these bad meds. If > > you are the power of attorney you have the right to sign her out of there > > and take her to Mayo or another hospital. If you are the only relative > > speaking on her behalf they have to listen to you. If you have siblings > or > > other relatives involved in her care decisions you have to meet with them > > and come to an agreement about what to do. Best wishes. > > You are in my thoughts and prayers, > > Pat M. > > > > On Fri, Dec 23, 2011 at 6:02 AM, Freda Hodson > wrote: > > > > > ** > > > > > > > > > She is at Community Hospital East in Indianapolis. She walked in and > now > > > she is bed-ridden, can't feed herself, in continent, in Hospice > dieing. How > > > can I make them listen to me about the drugs > > > > > > ________________________________ > > > > > > To: LBDcaregivers > > > Sent: Friday, December 23, 2011 12:40 AM > > > Subject: Re: drugs used to treat > > > > > > > > > I am so sorry to hear about this treatment of your mother. Many of > those > > > medications you mention are not supposed to be used in treating LBD. > You > > > need to get your Mom out of that hospital and to Mayo Clinic or some > really > > > good medical center that KNOWS how to treat LBD, or you may soon lose > her I > > > fear. This is just terrible! May I ask where and what hospital she is > > > in? Please get your mother to a better place. Haldol and methadone > > > especially are very bad and can do harm that can be irreversible. You > say > > > you talked with someone from Mayo Clinic. Can you take your Mother > there > > > right away? > > > Prayers are with you and your Mom, > > > Pat M. > > > > > > > > > > > > > ** > > > > > > > > > > > > > > > Hi I need more information on my mother who was diagnosed Dec. 2 > with lbd > > > > and she has remained in the Hospital. It has been 20 days now and > she is > > > > still declining. She walked into the hospital and was talking and had > > > been > > > > taking care of her self. She was hospitalized for hallusenations. > She was > > > > put on many psych meds and ativan, tylenol and methadone. She is now > in > > > > Hospice and they have dc'd everything except pain meds. I have asked > for > > > a > > > > second opinion and want her transfered before they kill her. I'm at > whits > > > > end not knowing what to do. any suggestions. The doctors say that > she has > > > > declined fast for some reason but they do not know. I talked to > someone > > > > from Mayo and they had never head of anyone being diagnosed and > dying in > > > 20 > > > > days. A list of meds that she has been on and some at the same time: > > > > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > > > > morphine methadone tylenol She may have been given more. Freda > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2011 Report Share Posted December 24, 2011 I have been in contact with hospital administrators from community and IU they say if we fire Hospice no one will take my mom and they would not refer her to another neurologist. All this has to be done through physician to physician Hospice said if we took her from the hospital we would owe the entire bill of 21 days since her diagnosis and admittance into the hospital. ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Saturday, December 24, 2011 7:22 AM Subject: Re: drugs used to treat  my brother is a yes man to all the doctors. my mom's condition took a turn for the worst night Hospice was called in and I asked for an IV and they refused. They said that they are going to let nature take its course. My mom developed a sore throat, possible uti and dehydrated and possible shingles. She had been up all day with me eating and drinking and laughing. her mind is in tact. She just kept telling me that she didn't feel right and her throat hurt My mom is fully aware of everything that is going on she just cannot feed herself or walk anymore since the bad drugs. She was supposed to get transfered out yesterday and we were told that we were waiting on a bed. They lied they were not looking for a bed just waiting for her to die and to pacify me. They treatened me that if I took off hospice and moved her that i would owe the bill for the hospital. They said IU would not take my mom if we showed up at the emergency with her without a doctor. Her hospice neuro said he would not help with a doctor replacement because of being accused of a monoply. Is there any one in inpls that will help me before they kill her ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Friday, December 23, 2011 10:58 PM Subject: Re: drugs used to treat  Hi Freda Is your brother now up on the drugs to avoid list too? I would suggest that you both make an appt with the hospital administrator and bring the list and other medical info and a written instruction that the methadone and ativan be decreased as rapidly as possible. That physical therapy should be started also. My mil's neuro had her taking a gram of tylenol every 6 hours to manage pain. Later we added ibuprofen which helped a lot. She may need something for anxiety or agitation but there are other drugs that can be tried as well that may be much better. Look up " neuroleptic syndrome " and show the connection with this, LBD, and these drugs this incompetent doctor has been experimenting on your mother with. If I were in your shoes I would insist this doctor not have anything further to do with her care and that the hospital locate someone knowledgeable before she suffers any further. I would ask that a plan for her recovery from this drug induced minimally functioning state be made and Implementing in the meantime while she waits a bed at IU. I think if you and you brother can present a united stand on this you will see some immediate improvement. I sure hope do. My mother in law has two appointed medical POAs - myself and my husband. This way there has always.been someone to keep an eye on her and anything they might try giving her. Things when she had to go to a hospital for something. I have had some heated arguments over drugs with doctors that think they know it all. I hope at IU she can be properly evaluated. Hang in there and your brother too. -Dorothy from cell phone > when my mom was put into hospice on wed. it was because we asked them to dc all drugs to get her system clear. Now all they will do is keep her comfortable with ativan and methone 2 mg contant. They took out all iv's and ports. She is not eating much or drinking. I have 7 brothers and sisters and my brother has power of attorney. I have finally convinced him that she needs to go somewhere else. I'm waiting on IU to respond with bed. > > ________________________________ > > To: LBDcaregivers > Sent: Friday, December 23, 2011 10:06 AM > Subject: Re: drugs used to treat > > Do you have the Power of attorney for healthcare for your Mom? Or are you > the only relative caring for her? That should give you the standing to say > NO to all of these medications on her behalf. Have a meeting with the > doctors immediately and tell them to stop giving her these bad meds. If > you are the power of attorney you have the right to sign her out of there > and take her to Mayo or another hospital. If you are the only relative > speaking on her behalf they have to listen to you. If you have siblings or > other relatives involved in her care decisions you have to meet with them > and come to an agreement about what to do. Best wishes. > You are in my thoughts and prayers, > Pat M. > > > > > ** > > > > > > She is at Community Hospital East in Indianapolis. She walked in and now > > she is bed-ridden, can't feed herself, in continent, in Hospice dieing. How > > can I make them listen to me about the drugs > > > > ________________________________ > > > > To: LBDcaregivers > > Sent: Friday, December 23, 2011 12:40 AM > > Subject: Re: drugs used to treat > > > > > > I am so sorry to hear about this treatment of your mother. Many of those > > medications you mention are not supposed to be used in treating LBD. You > > need to get your Mom out of that hospital and to Mayo Clinic or some really > > good medical center that KNOWS how to treat LBD, or you may soon lose her I > > fear. This is just terrible! May I ask where and what hospital she is > > in? Please get your mother to a better place. Haldol and methadone > > especially are very bad and can do harm that can be irreversible. You say > > you talked with someone from Mayo Clinic. Can you take your Mother there > > right away? > > Prayers are with you and your Mom, > > Pat M. > > > > > > > > > ** > > > > > > > > > > > Hi I need more information on my mother who was diagnosed Dec. 2 with lbd > > > and she has remained in the Hospital. It has been 20 days now and she is > > > still declining. She walked into the hospital and was talking and had > > been > > > taking care of her self. She was hospitalized for hallusenations. She was > > > put on many psych meds and ativan, tylenol and methadone. She is now in > > > Hospice and they have dc'd everything except pain meds. I have asked for > > a > > > second opinion and want her transfered before they kill her. I'm at whits > > > end not knowing what to do. any suggestions. The doctors say that she has > > > declined fast for some reason but they do not know. I talked to someone > > > from Mayo and they had never head of anyone being diagnosed and dying in > > 20 > > > days. A list of meds that she has been on and some at the same time: > > > Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope > > > morphine methadone tylenol She may have been given more. Freda > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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