Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Dear Robin, .... I took her to the hospital and it turned out she broke her wrist, but > the scan didn't show any problems with her head. She was given morphine for > the pain at the hospital and a prescription for Tramadal; she was splinted > and told to follow up with a hand specialist to set her hand. The next day > she began to have conversations with people who were not there and had > strange behaviors. I recalled from my previous visits to this group that a > UTI could cause these types of things, so I told my sister (who thougth I > was crazy) about it. There just happened to be a nurse scheduled to visit > my mother and I asked her to take a sample and have it tested for a UTI. As > it turned out, she did have one and was given zpak (I believe) for the UTI. > > My mother then went to the hand doctor to have her wrist set and was given > a prescription for Vicadin and told to take for the pain. > Those pain medications can cause hallucinations - even in people without LBD, so stopping them is a good idea if the pain is tolerable without them. I hope your mother will be better when she's flushed them out of her system and got the UTI under control. You don't mention any of the medications typically used to control hallucinations and slow the progress of LBD. Is she taking any of them? Have you talked to her neurologist about them? Best wishes, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Dear Robin, .... I took her to the hospital and it turned out she broke her wrist, but > the scan didn't show any problems with her head. She was given morphine for > the pain at the hospital and a prescription for Tramadal; she was splinted > and told to follow up with a hand specialist to set her hand. The next day > she began to have conversations with people who were not there and had > strange behaviors. I recalled from my previous visits to this group that a > UTI could cause these types of things, so I told my sister (who thougth I > was crazy) about it. There just happened to be a nurse scheduled to visit > my mother and I asked her to take a sample and have it tested for a UTI. As > it turned out, she did have one and was given zpak (I believe) for the UTI. > > My mother then went to the hand doctor to have her wrist set and was given > a prescription for Vicadin and told to take for the pain. > Those pain medications can cause hallucinations - even in people without LBD, so stopping them is a good idea if the pain is tolerable without them. I hope your mother will be better when she's flushed them out of her system and got the UTI under control. You don't mention any of the medications typically used to control hallucinations and slow the progress of LBD. Is she taking any of them? Have you talked to her neurologist about them? Best wishes, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Dear Robin, .... I took her to the hospital and it turned out she broke her wrist, but > the scan didn't show any problems with her head. She was given morphine for > the pain at the hospital and a prescription for Tramadal; she was splinted > and told to follow up with a hand specialist to set her hand. The next day > she began to have conversations with people who were not there and had > strange behaviors. I recalled from my previous visits to this group that a > UTI could cause these types of things, so I told my sister (who thougth I > was crazy) about it. There just happened to be a nurse scheduled to visit > my mother and I asked her to take a sample and have it tested for a UTI. As > it turned out, she did have one and was given zpak (I believe) for the UTI. > > My mother then went to the hand doctor to have her wrist set and was given > a prescription for Vicadin and told to take for the pain. > Those pain medications can cause hallucinations - even in people without LBD, so stopping them is a good idea if the pain is tolerable without them. I hope your mother will be better when she's flushed them out of her system and got the UTI under control. You don't mention any of the medications typically used to control hallucinations and slow the progress of LBD. Is she taking any of them? Have you talked to her neurologist about them? Best wishes, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Hello Robin, I just began my fight, and I will say when I first came to this group, just over a week ago and started seeing all the posts, it scared me silly. I couldn't believe things were going to get that much worse, even thought I knew in my heart they would. Hearing your story brings home how quickly things can go from manageable to horrible. I am so sorry. Monroe WA From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Robin Nuthman-green Sent: Friday, March 23, 2012 4:59 AM To: LBDcaregivers Subject: Seeking Help/Advice Hello everyone. It has been a long time since I have been here, but for me now is the time when I need the support and help of others who are, or have, gone through being the caretaker of a loved one with LB. When my mother was told she had LB, I researched it and tried to learn as much as I could. I joined this group and read all the posts and thought to myself how unbelieveable that one day my mother would be experiencing the things everyone was talking about; I really never believed that she would; I was wrong and of course she is. Over the last few weeks so many things that I read on here before became so helpful to me in taking care of my mother and that is why now I am back and feel this group will be a great support for me and a place where I can get helpful information. Thanks for being here! I am seeking some help with a problem that recently came up with my mother and I believe that it may be medication related but I can't put my finger on it. Up to about 8 weeks ago my mom was living alone, but I was coming to her home three times a day doing various things for her. It was at that time we decided that maybe she shouldn't be alone anymore so I basically moved into her home to care for her(she will be moving in with me when the addition is done). So really up to that point she wasn't to bad and managed fairly well with eating, bathroom, etc type things. Then 2 weeks ago, I had returned to her house from being at my house to find her in stuck between her glider and ottoman. She was not hurt so we laughed a little and I helped her up. I stood her up, asked if she was steady or needed help and she said she was fine. I turned and walked away into another room and heard a loud knock. I stood still and yelled for her, with on answer; I yelled again as I walked into the room and she was laying on the floor. I rushed to help her and when I got her up she had a hugh knot on her head and her wrist began to swell. I took her to the hospital and it turned out she broke her wrist, but the scan didn't show any problems with her head. She was given moraphine for the pain at the hospital and a prescription for Tramadal; she was splinted and told to follow up with a hand specialist to set her hand. The next day she began to have conversations with people who were not there and had strange behaviors. I recalled from my previous visits to this group that a UTI could cause these types of things, so I told my sister (who thougth I was crazy) about it. There just happened to be a nurse scheduled to visit my mother and I asked her to take a sample and have it tested for a UTI. As it turned out, she did have one and was given zpak (I believe) for the UTI. My mother then went to the hand doctor to have her wrist set and was given a prescription for Vicadin and told to take for the pain. Over the last week my mother has gotten so much worse. She can no longer walk or eat on her own; there are many visions of people everywhere; which seems to be enhanced when the television is on. She has always been a very loving person who showed great appreciation for everything I do for her, but last evening, she was rude and mean and refused to let me help her eat. Last night she hardly slept at all, neither did I, because of the vision and she really believed there were many people in the house. I pretended to see them also, walked them to the door and told them to leave. This helped to settle her down for awhile (a trick I also learned from this group). This is when I learned that she was looking/listening to the television and believed the people on the TV was in the room. I turned it off and she became quite and is now resting. First I will say I'm sorry for such a long message, and for some you may feel there is a lot of useless information, but there is a point. As I went through the last couple weeks I realized that not all doctors have a clue as to what LB is, nor do they know how different medications affect LB patients. That is why we need to ask the knowledgable people, such as the nuro and experienced people, such as those in this group. As I said before, I believe that my mother's decline is medication related and I have stopped giving her the pain meds (she is not indicating that she is in a lot of pain for now) her family doctor told us to give her Tylonol, but I believe I saw that we shouldn't give LB patients that either. Also, she was given Citalopram for depression several months ago. Again, sorry for the lengthly story, and my question is does it seem to others that it is medication related, and if so, what do you feel may be reacting with each other. Thank you for being here to help people like me to work through a very difficult time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Dear Robin, I hope your mom can rebound from the trauma of breaking her wrist, bumping her head and uti all at the same time as well as the plethora of meds she all of a sudden has been introduced to. My goodness, no wonder she's gone down so much so quickly. If she doesn't need the pain meds, great, but if she is in pain and not able to properly tell you she could be acting out because of that too. Regular Tylenol is recommended as safe for those with LBD. My mom was on 3 a day for years for comfort. Tramadol/Ultram I believe is OK for many. A very knowledgeable gentleman who used to post much useful information here found it worked well for his lo and we have had other positive reports on its use. Once the crisis is over, uti cleared and she is off the pain meds I hope her new baseline is near where it was. All the best through this stressful time. > > Hello everyone. It has been a long time since I have been here, but for me now is the time when I need the support and help of others who are, or have, gone through being the caretaker of a loved one with LB. > > When my mother was told she had LB, I researched it and tried to learn as much as I could. I joined this group and read all the posts and thought to myself how unbelieveable that one day my mother would be experiencing the things everyone was talking about; I really never believed that she would; I was wrong and of course she is. Over the last few weeks so many things that I read on here before became so helpful to me in taking care of my mother and that is why now I am back and feel this group will be a great support for me and a place where I can get helpful information. Thanks for being here! > > I am seeking some help with a problem that recently came up with my mother and I believe that it may be medication related but I can't put my finger on it. > > Up to about 8 weeks ago my mom was living alone, but I was coming to her home three times a day doing various things for her. It was at that time we decided that maybe she shouldn't be alone anymore so I basically moved into her home to care for her(she will be moving in with me when the addition is done). So really up to that point she wasn't to bad and managed fairly well with eating, bathroom, etc type things. > > Then 2 weeks ago, I had returned to her house from being at my house to find her in stuck between her glider and ottoman. She was not hurt so we laughed a little and I helped her up. I stood her up, asked if she was steady or needed help and she said she was fine. I turned and walked away into another room and heard a loud knock. I stood still and yelled for her, with on answer; I yelled again as I walked into the room and she was laying on the floor. I rushed to help her and when I got her up she had a hugh knot on her head and her wrist began to swell. I took her to the hospital and it turned out she broke her wrist, but the scan didn't show any problems with her head. She was given moraphine for the pain at the hospital and a prescription for Tramadal; she was splinted and told to follow up with a hand specialist to set her hand. The next day she began to have conversations with people who were not there and had strange behaviors. I recalled from my previous visits to this group that a UTI could cause these types of things, so I told my sister (who thougth I was crazy) about it. There just happened to be a nurse scheduled to visit my mother and I asked her to take a sample and have it tested for a UTI. As it turned out, she did have one and was given zpak (I believe) for the UTI. > > My mother then went to the hand doctor to have her wrist set and was given a prescription for Vicadin and told to take for the pain. > > Over the last week my mother has gotten so much worse. She can no longer walk or eat on her own; there are many visions of people everywhere; which seems to be enhanced when the television is on. She has always been a very loving person who showed great appreciation for everything I do for her, but last evening, she was rude and mean and refused to let me help her eat. > > Last night she hardly slept at all, neither did I, because of the vision and she really believed there were many people in the house. I pretended to see them also, walked them to the door and told them to leave. This helped to settle her down for awhile (a trick I also learned from this group). This is when I learned that she was looking/listening to the television and believed the people on the TV was in the room. I turned it off and she became quite and is now resting. > > First I will say I'm sorry for such a long message, and for some you may feel there is a lot of useless information, but there is a point. As I went through the last couple weeks I realized that not all doctors have a clue as to what LB is, nor do they know how different medications affect LB patients. That is why we need to ask the knowledgable people, such as the nuro and experienced people, such as those in this group. > > As I said before, I believe that my mother's decline is medication related and I have stopped giving her the pain meds (she is not indicating that she is in a lot of pain for now) her family doctor told us to give her Tylonol, but I believe I saw that we shouldn't give LB patients that either. Also, she was given Citalopram for depression several months ago. > > Again, sorry for the lengthly story, and my question is does it seem to others that it is medication related, and if so, what do you feel may be reacting with each other. Thank you for being here to help people like me to work through a very difficult time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Dear Robin, I hope your mom can rebound from the trauma of breaking her wrist, bumping her head and uti all at the same time as well as the plethora of meds she all of a sudden has been introduced to. My goodness, no wonder she's gone down so much so quickly. If she doesn't need the pain meds, great, but if she is in pain and not able to properly tell you she could be acting out because of that too. Regular Tylenol is recommended as safe for those with LBD. My mom was on 3 a day for years for comfort. Tramadol/Ultram I believe is OK for many. A very knowledgeable gentleman who used to post much useful information here found it worked well for his lo and we have had other positive reports on its use. Once the crisis is over, uti cleared and she is off the pain meds I hope her new baseline is near where it was. All the best through this stressful time. > > Hello everyone. It has been a long time since I have been here, but for me now is the time when I need the support and help of others who are, or have, gone through being the caretaker of a loved one with LB. > > When my mother was told she had LB, I researched it and tried to learn as much as I could. I joined this group and read all the posts and thought to myself how unbelieveable that one day my mother would be experiencing the things everyone was talking about; I really never believed that she would; I was wrong and of course she is. Over the last few weeks so many things that I read on here before became so helpful to me in taking care of my mother and that is why now I am back and feel this group will be a great support for me and a place where I can get helpful information. Thanks for being here! > > I am seeking some help with a problem that recently came up with my mother and I believe that it may be medication related but I can't put my finger on it. > > Up to about 8 weeks ago my mom was living alone, but I was coming to her home three times a day doing various things for her. It was at that time we decided that maybe she shouldn't be alone anymore so I basically moved into her home to care for her(she will be moving in with me when the addition is done). So really up to that point she wasn't to bad and managed fairly well with eating, bathroom, etc type things. > > Then 2 weeks ago, I had returned to her house from being at my house to find her in stuck between her glider and ottoman. She was not hurt so we laughed a little and I helped her up. I stood her up, asked if she was steady or needed help and she said she was fine. I turned and walked away into another room and heard a loud knock. I stood still and yelled for her, with on answer; I yelled again as I walked into the room and she was laying on the floor. I rushed to help her and when I got her up she had a hugh knot on her head and her wrist began to swell. I took her to the hospital and it turned out she broke her wrist, but the scan didn't show any problems with her head. She was given moraphine for the pain at the hospital and a prescription for Tramadal; she was splinted and told to follow up with a hand specialist to set her hand. The next day she began to have conversations with people who were not there and had strange behaviors. I recalled from my previous visits to this group that a UTI could cause these types of things, so I told my sister (who thougth I was crazy) about it. There just happened to be a nurse scheduled to visit my mother and I asked her to take a sample and have it tested for a UTI. As it turned out, she did have one and was given zpak (I believe) for the UTI. > > My mother then went to the hand doctor to have her wrist set and was given a prescription for Vicadin and told to take for the pain. > > Over the last week my mother has gotten so much worse. She can no longer walk or eat on her own; there are many visions of people everywhere; which seems to be enhanced when the television is on. She has always been a very loving person who showed great appreciation for everything I do for her, but last evening, she was rude and mean and refused to let me help her eat. > > Last night she hardly slept at all, neither did I, because of the vision and she really believed there were many people in the house. I pretended to see them also, walked them to the door and told them to leave. This helped to settle her down for awhile (a trick I also learned from this group). This is when I learned that she was looking/listening to the television and believed the people on the TV was in the room. I turned it off and she became quite and is now resting. > > First I will say I'm sorry for such a long message, and for some you may feel there is a lot of useless information, but there is a point. As I went through the last couple weeks I realized that not all doctors have a clue as to what LB is, nor do they know how different medications affect LB patients. That is why we need to ask the knowledgable people, such as the nuro and experienced people, such as those in this group. > > As I said before, I believe that my mother's decline is medication related and I have stopped giving her the pain meds (she is not indicating that she is in a lot of pain for now) her family doctor told us to give her Tylonol, but I believe I saw that we shouldn't give LB patients that either. Also, she was given Citalopram for depression several months ago. > > Again, sorry for the lengthly story, and my question is does it seem to others that it is medication related, and if so, what do you feel may be reacting with each other. Thank you for being here to help people like me to work through a very difficult time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Ann, I'm not sure which medications you are talking about that slows the progression, but she is on Nemenda and Areicept (spelling wrong ;-) )and has been for awhile. I don't know how long it takes for it to be out of her system, but I hope soon.  Thanks, Robin ________________________________ To: LBDcaregivers Sent: Friday, March 23, 2012 11:10 AM Subject: Re: Seeking Help/Advice  Dear Robin, .... I took her to the hospital and it turned out she broke her wrist, but > the scan didn't show any problems with her head. She was given morphine for > the pain at the hospital and a prescription for Tramadal; she was splinted > and told to follow up with a hand specialist to set her hand. The next day > she began to have conversations with people who were not there and had > strange behaviors. I recalled from my previous visits to this group that a > UTI could cause these types of things, so I told my sister (who thougth I > was crazy) about it. There just happened to be a nurse scheduled to visit > my mother and I asked her to take a sample and have it tested for a UTI. As > it turned out, she did have one and was given zpak (I believe) for the UTI. > > My mother then went to the hand doctor to have her wrist set and was given > a prescription for Vicadin and told to take for the pain. > Those pain medications can cause hallucinations - even in people without LBD, so stopping them is a good idea if the pain is tolerable without them. I hope your mother will be better when she's flushed them out of her system and got the UTI under control. You don't mention any of the medications typically used to control hallucinations and slow the progress of LBD. Is she taking any of them? Have you talked to her neurologist about them? Best wishes, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 There's no problem with Tylenol and LBD. There is a problem with Tylenol PM and LBD. You may need to consider an atypical antipsychotic such as Seroquel for the hallucinations, if they are frightening to your mother. Speak with the neurologist or primary care physician about it. (The PCP sounds good.) > ..... > As I said before, I believe that my mother's decline is medication related and I have stopped giving her the pain meds (she is not indicating that she is in a lot of pain for now) her family doctor told us to give her Tylonol, but I believe I saw that we shouldn't give LB patients that either. Also, she was given Citalopram for depression several months ago. > > Again, sorry for the lengthly story, and my question is does it seem to others that it is medication related, and if so, what do you feel may be reacting with each other. Thank you for being here to help people like me to work through a very difficult time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 There's no problem with Tylenol and LBD. There is a problem with Tylenol PM and LBD. You may need to consider an atypical antipsychotic such as Seroquel for the hallucinations, if they are frightening to your mother. Speak with the neurologist or primary care physician about it. (The PCP sounds good.) > ..... > As I said before, I believe that my mother's decline is medication related and I have stopped giving her the pain meds (she is not indicating that she is in a lot of pain for now) her family doctor told us to give her Tylonol, but I believe I saw that we shouldn't give LB patients that either. Also, she was given Citalopram for depression several months ago. > > Again, sorry for the lengthly story, and my question is does it seem to others that it is medication related, and if so, what do you feel may be reacting with each other. Thank you for being here to help people like me to work through a very difficult time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Hi, Robin NG. Mom was on Namenda and Aricept for quite some time with no adverse effects that could be attributed to them. But I know from personal experience, dementia or not, that Vicadin can be very entertaining. Vicadin is usually a " right now " medication for pain. It isn't something to take if you don't absolutely have to. Tylenol is what Mom's nursing home used. And before the nursing home, Mom (we) were told to use Tylenol instead of Advil. I don't know anything about the other drug you mentioned. But one would hope that each doctor prescribing a medication check for possible interaction with the medications already being taken. But, it wouldn't hurt to go over the list of medications and make sure they are all OK together. BTW Vicadin can be a bit addicting. I also know this from experience. Sometimes you even feel like your pain is bad enough for the Vicadin, when Tylenol will do the job. After prolonged use, you can even become afraid to stop. Be very careful with it. The things you mentioned are so similar to what my mom went through, except she was alone and broke both shoulders. She couldn't remember anything about the fall - just lying there waiting for her aide to arrive. Kate On Fri, Mar 23, 2012 at 11:41 AM, Robin Nuthman-green < bobbiesdaughter@...> wrote: > ** > > > Ann, I'm not sure which medications you are talking about that slows the > progression, but she is on Nemenda and Areicept (spelling wrong ;-) )and > has been for awhile. I don't know how long it takes for it to be out of her > system, but I hope soon. > > Thanks, Robin > > ________________________________ > > To: LBDcaregivers > Sent: Friday, March 23, 2012 11:10 AM > Subject: Re: Seeking Help/Advice > > > > Dear Robin, > > ... I took her to the hospital and it turned out she broke her wrist, but > > the scan didn't show any problems with her head. She was given morphine > for > > the pain at the hospital and a prescription for Tramadal; she was > splinted > > and told to follow up with a hand specialist to set her hand. The next > day > > she began to have conversations with people who were not there and had > > strange behaviors. I recalled from my previous visits to this group that > a > > UTI could cause these types of things, so I told my sister (who thougth I > > was crazy) about it. There just happened to be a nurse scheduled to visit > > my mother and I asked her to take a sample and have it tested for a UTI. > As > > it turned out, she did have one and was given zpak (I believe) for the > UTI. > > > > My mother then went to the hand doctor to have her wrist set and was > given > > a prescription for Vicadin and told to take for the pain. > > > > Those pain medications can cause hallucinations - even in people without > LBD, so stopping them is a good idea if the pain is tolerable without them. > I hope your mother will be better when she's flushed them out of her > system and got the UTI under control. You don't mention any of the > medications typically used to control hallucinations and slow the progress > of LBD. Is she taking any of them? Have you talked to her neurologist > about them? > > Best wishes, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Hi, Robin NG. Mom was on Namenda and Aricept for quite some time with no adverse effects that could be attributed to them. But I know from personal experience, dementia or not, that Vicadin can be very entertaining. Vicadin is usually a " right now " medication for pain. It isn't something to take if you don't absolutely have to. Tylenol is what Mom's nursing home used. And before the nursing home, Mom (we) were told to use Tylenol instead of Advil. I don't know anything about the other drug you mentioned. But one would hope that each doctor prescribing a medication check for possible interaction with the medications already being taken. But, it wouldn't hurt to go over the list of medications and make sure they are all OK together. BTW Vicadin can be a bit addicting. I also know this from experience. Sometimes you even feel like your pain is bad enough for the Vicadin, when Tylenol will do the job. After prolonged use, you can even become afraid to stop. Be very careful with it. The things you mentioned are so similar to what my mom went through, except she was alone and broke both shoulders. She couldn't remember anything about the fall - just lying there waiting for her aide to arrive. Kate On Fri, Mar 23, 2012 at 11:41 AM, Robin Nuthman-green < bobbiesdaughter@...> wrote: > ** > > > Ann, I'm not sure which medications you are talking about that slows the > progression, but she is on Nemenda and Areicept (spelling wrong ;-) )and > has been for awhile. I don't know how long it takes for it to be out of her > system, but I hope soon. > > Thanks, Robin > > ________________________________ > > To: LBDcaregivers > Sent: Friday, March 23, 2012 11:10 AM > Subject: Re: Seeking Help/Advice > > > > Dear Robin, > > ... I took her to the hospital and it turned out she broke her wrist, but > > the scan didn't show any problems with her head. She was given morphine > for > > the pain at the hospital and a prescription for Tramadal; she was > splinted > > and told to follow up with a hand specialist to set her hand. The next > day > > she began to have conversations with people who were not there and had > > strange behaviors. I recalled from my previous visits to this group that > a > > UTI could cause these types of things, so I told my sister (who thougth I > > was crazy) about it. There just happened to be a nurse scheduled to visit > > my mother and I asked her to take a sample and have it tested for a UTI. > As > > it turned out, she did have one and was given zpak (I believe) for the > UTI. > > > > My mother then went to the hand doctor to have her wrist set and was > given > > a prescription for Vicadin and told to take for the pain. > > > > Those pain medications can cause hallucinations - even in people without > LBD, so stopping them is a good idea if the pain is tolerable without them. > I hope your mother will be better when she's flushed them out of her > system and got the UTI under control. You don't mention any of the > medications typically used to control hallucinations and slow the progress > of LBD. Is she taking any of them? Have you talked to her neurologist > about them? > > Best wishes, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Hi, Robin NG. Mom was on Namenda and Aricept for quite some time with no adverse effects that could be attributed to them. But I know from personal experience, dementia or not, that Vicadin can be very entertaining. Vicadin is usually a " right now " medication for pain. It isn't something to take if you don't absolutely have to. Tylenol is what Mom's nursing home used. And before the nursing home, Mom (we) were told to use Tylenol instead of Advil. I don't know anything about the other drug you mentioned. But one would hope that each doctor prescribing a medication check for possible interaction with the medications already being taken. But, it wouldn't hurt to go over the list of medications and make sure they are all OK together. BTW Vicadin can be a bit addicting. I also know this from experience. Sometimes you even feel like your pain is bad enough for the Vicadin, when Tylenol will do the job. After prolonged use, you can even become afraid to stop. Be very careful with it. The things you mentioned are so similar to what my mom went through, except she was alone and broke both shoulders. She couldn't remember anything about the fall - just lying there waiting for her aide to arrive. Kate On Fri, Mar 23, 2012 at 11:41 AM, Robin Nuthman-green < bobbiesdaughter@...> wrote: > ** > > > Ann, I'm not sure which medications you are talking about that slows the > progression, but she is on Nemenda and Areicept (spelling wrong ;-) )and > has been for awhile. I don't know how long it takes for it to be out of her > system, but I hope soon. > > Thanks, Robin > > ________________________________ > > To: LBDcaregivers > Sent: Friday, March 23, 2012 11:10 AM > Subject: Re: Seeking Help/Advice > > > > Dear Robin, > > ... I took her to the hospital and it turned out she broke her wrist, but > > the scan didn't show any problems with her head. She was given morphine > for > > the pain at the hospital and a prescription for Tramadal; she was > splinted > > and told to follow up with a hand specialist to set her hand. The next > day > > she began to have conversations with people who were not there and had > > strange behaviors. I recalled from my previous visits to this group that > a > > UTI could cause these types of things, so I told my sister (who thougth I > > was crazy) about it. There just happened to be a nurse scheduled to visit > > my mother and I asked her to take a sample and have it tested for a UTI. > As > > it turned out, she did have one and was given zpak (I believe) for the > UTI. > > > > My mother then went to the hand doctor to have her wrist set and was > given > > a prescription for Vicadin and told to take for the pain. > > > > Those pain medications can cause hallucinations - even in people without > LBD, so stopping them is a good idea if the pain is tolerable without them. > I hope your mother will be better when she's flushed them out of her > system and got the UTI under control. You don't mention any of the > medications typically used to control hallucinations and slow the progress > of LBD. Is she taking any of them? Have you talked to her neurologist > about them? > > Best wishes, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Oh, and Robin. You will still smile occasionally. There are some very beautiful, special moments ahead and even some humor. And a good number of LBDers pass away from some other cause before things are at their very worst. True, Mom couldn't talk, but she still made sure you got her meaning. And yes, she had lost her ability to walk. But we were still able to take her on outings, usually weekly. And the personal stuff was sometimes unpleasant. But Mom never lost her sense of humor. She was just beginning to lose her ability to lift food to her mouth when she was blessed with pneumonia. She passed away within 3 days and I am still in awe of the beauty of that very personal moment. Don't let LBD claim your spirit as its victim, too. Find the blessings along the way and share them. And find things that you can both chuckle about. We even laughed over some profoundly challenging bathroom visits. I think it makes it easier for your LO to get through this, too. In the really bad moments, saying to myself " it is what it is " helped. This is your new normal and anything that seems good probably is good and something to cling to. I know how bad dementia can be at its worst. Three of my grandparents had some form of it and the fourth didn't live past 63. But I also know there are things and experiences to remember - things to smile about. It is often a matter of adjusting expectations. Kate > ** > > > Hello Robin, > > I just began my fight, and I will say when I first came to this group, just > over a week ago and started seeing all the posts, it scared me silly. I > couldn't believe things were going to get that much worse, even thought I > knew in my heart they would. Hearing your story brings home how quickly > things can go from manageable to horrible. > > I am so sorry. > > > > Monroe WA > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of Robin Nuthman-green > Sent: Friday, March 23, 2012 4:59 AM > To: LBDcaregivers > Subject: Seeking Help/Advice > > > Hello everyone. It has been a long time since I have been here, but for me > now is the time when I need the support and help of others who are, or > have, > gone through being the caretaker of a loved one with LB. > > When my mother was told she had LB, I researched it and tried to learn as > much as I could. I joined this group and read all the posts and thought to > myself how unbelieveable that one day my mother would be experiencing the > things everyone was talking about; I really never believed that she would; > I > was wrong and of course she is. Over the last few weeks so many things that > I read on here before became so helpful to me in taking care of my mother > and that is why now I am back and feel this group will be a great support > for me and a place where I can get helpful information. Thanks for being > here! > > I am seeking some help with a problem that recently came up with my mother > and I believe that it may be medication related but I can't put my finger > on > it. > > Up to about 8 weeks ago my mom was living alone, but I was coming to her > home three times a day doing various things for her. It was at that time we > decided that maybe she shouldn't be alone anymore so I basically moved into > her home to care for her(she will be moving in with me when the addition is > done). So really up to that point she wasn't to bad and managed fairly well > with eating, bathroom, etc type things. > > Then 2 weeks ago, I had returned to her house from being at my house to > find > her in stuck between her glider and ottoman. She was not hurt so we laughed > a little and I helped her up. I stood her up, asked if she was steady or > needed help and she said she was fine. I turned and walked away into > another > room and heard a loud knock. I stood still and yelled for her, with on > answer; I yelled again as I walked into the room and she was laying on the > floor. I rushed to help her and when I got her up she had a hugh knot on > her > head and her wrist began to swell. I took her to the hospital and it turned > out she broke her wrist, but the scan didn't show any problems with her > head. She was given moraphine for the pain at the hospital and a > prescription for Tramadal; she was splinted and told to follow up with a > hand specialist to set her hand. The next day she began to have > conversations with people who were not there and had strange behaviors. I > recalled from my previous visits to this group that a UTI could cause these > types of things, so I told my sister (who thougth I was crazy) about it. > There just happened to be a nurse scheduled to visit my mother and I asked > her to take a sample and have it tested for a UTI. As it turned out, she > did > have one and was given zpak (I believe) for the UTI. > > My mother then went to the hand doctor to have her wrist set and was given > a > prescription for Vicadin and told to take for the pain. > > Over the last week my mother has gotten so much worse. She can no longer > walk or eat on her own; there are many visions of people everywhere; which > seems to be enhanced when the television is on. She has always been a very > loving person who showed great appreciation for everything I do for her, > but > last evening, she was rude and mean and refused to let me help her eat. > > Last night she hardly slept at all, neither did I, because of the vision > and > she really believed there were many people in the house. I pretended to see > them also, walked them to the door and told them to leave. This helped to > settle her down for awhile (a trick I also learned from this group). This > is > when I learned that she was looking/listening to the television and > believed > the people on the TV was in the room. I turned it off and she became quite > and is now resting. > > First I will say I'm sorry for such a long message, and for some you may > feel there is a lot of useless information, but there is a point. As I went > through the last couple weeks I realized that not all doctors have a clue > as > to what LB is, nor do they know how different medications affect LB > patients. That is why we need to ask the knowledgable people, such as the > nuro and experienced people, such as those in this group. > > As I said before, I believe that my mother's decline is medication related > and I have stopped giving her the pain meds (she is not indicating that she > is in a lot of pain for now) her family doctor told us to give her Tylonol, > but I believe I saw that we shouldn't give LB patients that either. Also, > she was given Citalopram for depression several months ago. > > Again, sorry for the lengthly story, and my question is does it seem to > others that it is medication related, and if so, what do you feel may be > reacting with each other. Thank you for being here to help people like me > to > work through a very difficult time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2012 Report Share Posted March 23, 2012 Oh, and Robin. You will still smile occasionally. There are some very beautiful, special moments ahead and even some humor. And a good number of LBDers pass away from some other cause before things are at their very worst. True, Mom couldn't talk, but she still made sure you got her meaning. And yes, she had lost her ability to walk. But we were still able to take her on outings, usually weekly. And the personal stuff was sometimes unpleasant. But Mom never lost her sense of humor. She was just beginning to lose her ability to lift food to her mouth when she was blessed with pneumonia. She passed away within 3 days and I am still in awe of the beauty of that very personal moment. Don't let LBD claim your spirit as its victim, too. Find the blessings along the way and share them. And find things that you can both chuckle about. We even laughed over some profoundly challenging bathroom visits. I think it makes it easier for your LO to get through this, too. In the really bad moments, saying to myself " it is what it is " helped. This is your new normal and anything that seems good probably is good and something to cling to. I know how bad dementia can be at its worst. Three of my grandparents had some form of it and the fourth didn't live past 63. But I also know there are things and experiences to remember - things to smile about. It is often a matter of adjusting expectations. Kate > ** > > > Hello Robin, > > I just began my fight, and I will say when I first came to this group, just > over a week ago and started seeing all the posts, it scared me silly. I > couldn't believe things were going to get that much worse, even thought I > knew in my heart they would. Hearing your story brings home how quickly > things can go from manageable to horrible. > > I am so sorry. > > > > Monroe WA > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of Robin Nuthman-green > Sent: Friday, March 23, 2012 4:59 AM > To: LBDcaregivers > Subject: Seeking Help/Advice > > > Hello everyone. It has been a long time since I have been here, but for me > now is the time when I need the support and help of others who are, or > have, > gone through being the caretaker of a loved one with LB. > > When my mother was told she had LB, I researched it and tried to learn as > much as I could. I joined this group and read all the posts and thought to > myself how unbelieveable that one day my mother would be experiencing the > things everyone was talking about; I really never believed that she would; > I > was wrong and of course she is. Over the last few weeks so many things that > I read on here before became so helpful to me in taking care of my mother > and that is why now I am back and feel this group will be a great support > for me and a place where I can get helpful information. Thanks for being > here! > > I am seeking some help with a problem that recently came up with my mother > and I believe that it may be medication related but I can't put my finger > on > it. > > Up to about 8 weeks ago my mom was living alone, but I was coming to her > home three times a day doing various things for her. It was at that time we > decided that maybe she shouldn't be alone anymore so I basically moved into > her home to care for her(she will be moving in with me when the addition is > done). So really up to that point she wasn't to bad and managed fairly well > with eating, bathroom, etc type things. > > Then 2 weeks ago, I had returned to her house from being at my house to > find > her in stuck between her glider and ottoman. She was not hurt so we laughed > a little and I helped her up. I stood her up, asked if she was steady or > needed help and she said she was fine. I turned and walked away into > another > room and heard a loud knock. I stood still and yelled for her, with on > answer; I yelled again as I walked into the room and she was laying on the > floor. I rushed to help her and when I got her up she had a hugh knot on > her > head and her wrist began to swell. I took her to the hospital and it turned > out she broke her wrist, but the scan didn't show any problems with her > head. She was given moraphine for the pain at the hospital and a > prescription for Tramadal; she was splinted and told to follow up with a > hand specialist to set her hand. The next day she began to have > conversations with people who were not there and had strange behaviors. I > recalled from my previous visits to this group that a UTI could cause these > types of things, so I told my sister (who thougth I was crazy) about it. > There just happened to be a nurse scheduled to visit my mother and I asked > her to take a sample and have it tested for a UTI. As it turned out, she > did > have one and was given zpak (I believe) for the UTI. > > My mother then went to the hand doctor to have her wrist set and was given > a > prescription for Vicadin and told to take for the pain. > > Over the last week my mother has gotten so much worse. She can no longer > walk or eat on her own; there are many visions of people everywhere; which > seems to be enhanced when the television is on. She has always been a very > loving person who showed great appreciation for everything I do for her, > but > last evening, she was rude and mean and refused to let me help her eat. > > Last night she hardly slept at all, neither did I, because of the vision > and > she really believed there were many people in the house. I pretended to see > them also, walked them to the door and told them to leave. This helped to > settle her down for awhile (a trick I also learned from this group). This > is > when I learned that she was looking/listening to the television and > believed > the people on the TV was in the room. I turned it off and she became quite > and is now resting. > > First I will say I'm sorry for such a long message, and for some you may > feel there is a lot of useless information, but there is a point. As I went > through the last couple weeks I realized that not all doctors have a clue > as > to what LB is, nor do they know how different medications affect LB > patients. That is why we need to ask the knowledgable people, such as the > nuro and experienced people, such as those in this group. > > As I said before, I believe that my mother's decline is medication related > and I have stopped giving her the pain meds (she is not indicating that she > is in a lot of pain for now) her family doctor told us to give her Tylonol, > but I believe I saw that we shouldn't give LB patients that either. Also, > she was given Citalopram for depression several months ago. > > Again, sorry for the lengthly story, and my question is does it seem to > others that it is medication related, and if so, what do you feel may be > reacting with each other. Thank you for being here to help people like me > to > work through a very difficult time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 , I'm sorry to hear that. I felt the same in the beginning; that those things would not happen to my mother, but they did. Even knowing it was coming didn't prepare me to see it, but I haved learned great information from reading the groups post. It was because of reading the posts that I learned how to handle the situation better.  Thank God that my mother woke up this morning nearly the way she was before the fall. She cannot remember the past week at all! I began to cry and told her I loved her and she told me she loved me to and asked me if I thought she didn't love me. I told her a little about the week, not to much because she would be upset of the events. It was wonderful to have my mama back.  I'm not sure if you have LB or one of your LO, but it would be very helpful to stay connected to the group and take notes of things that could be helpful down the line; it has been very helpful for me.  I look forward to keeping in touch.  Robin ________________________________ To: LBDcaregivers Sent: Friday, March 23, 2012 11:31 AM Subject: RE: Seeking Help/Advice  Hello Robin, I just began my fight, and I will say when I first came to this group, just over a week ago and started seeing all the posts, it scared me silly. I couldn't believe things were going to get that much worse, even thought I knew in my heart they would. Hearing your story brings home how quickly things can go from manageable to horrible. I am so sorry. Monroe WA From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Robin Nuthman-green Sent: Friday, March 23, 2012 4:59 AM To: LBDcaregivers Subject: Seeking Help/Advice Hello everyone. It has been a long time since I have been here, but for me now is the time when I need the support and help of others who are, or have, gone through being the caretaker of a loved one with LB. When my mother was told she had LB, I researched it and tried to learn as much as I could. I joined this group and read all the posts and thought to myself how unbelieveable that one day my mother would be experiencing the things everyone was talking about; I really never believed that she would; I was wrong and of course she is. Over the last few weeks so many things that I read on here before became so helpful to me in taking care of my mother and that is why now I am back and feel this group will be a great support for me and a place where I can get helpful information. Thanks for being here! I am seeking some help with a problem that recently came up with my mother and I believe that it may be medication related but I can't put my finger on it. Up to about 8 weeks ago my mom was living alone, but I was coming to her home three times a day doing various things for her. It was at that time we decided that maybe she shouldn't be alone anymore so I basically moved into her home to care for her(she will be moving in with me when the addition is done). So really up to that point she wasn't to bad and managed fairly well with eating, bathroom, etc type things. Then 2 weeks ago, I had returned to her house from being at my house to find her in stuck between her glider and ottoman. She was not hurt so we laughed a little and I helped her up. I stood her up, asked if she was steady or needed help and she said she was fine. I turned and walked away into another room and heard a loud knock. I stood still and yelled for her, with on answer; I yelled again as I walked into the room and she was laying on the floor. I rushed to help her and when I got her up she had a hugh knot on her head and her wrist began to swell. I took her to the hospital and it turned out she broke her wrist, but the scan didn't show any problems with her head. She was given moraphine for the pain at the hospital and a prescription for Tramadal; she was splinted and told to follow up with a hand specialist to set her hand. The next day she began to have conversations with people who were not there and had strange behaviors. I recalled from my previous visits to this group that a UTI could cause these types of things, so I told my sister (who thougth I was crazy) about it. There just happened to be a nurse scheduled to visit my mother and I asked her to take a sample and have it tested for a UTI. As it turned out, she did have one and was given zpak (I believe) for the UTI. My mother then went to the hand doctor to have her wrist set and was given a prescription for Vicadin and told to take for the pain. Over the last week my mother has gotten so much worse. She can no longer walk or eat on her own; there are many visions of people everywhere; which seems to be enhanced when the television is on. She has always been a very loving person who showed great appreciation for everything I do for her, but last evening, she was rude and mean and refused to let me help her eat. Last night she hardly slept at all, neither did I, because of the vision and she really believed there were many people in the house. I pretended to see them also, walked them to the door and told them to leave. This helped to settle her down for awhile (a trick I also learned from this group). This is when I learned that she was looking/listening to the television and believed the people on the TV was in the room. I turned it off and she became quite and is now resting. First I will say I'm sorry for such a long message, and for some you may feel there is a lot of useless information, but there is a point. As I went through the last couple weeks I realized that not all doctors have a clue as to what LB is, nor do they know how different medications affect LB patients. That is why we need to ask the knowledgable people, such as the nuro and experienced people, such as those in this group. As I said before, I believe that my mother's decline is medication related and I have stopped giving her the pain meds (she is not indicating that she is in a lot of pain for now) her family doctor told us to give her Tylonol, but I believe I saw that we shouldn't give LB patients that either. Also, she was given Citalopram for depression several months ago. Again, sorry for the lengthly story, and my question is does it seem to others that it is medication related, and if so, what do you feel may be reacting with each other. Thank you for being here to help people like me to work through a very difficult time. Quote Link to comment Share on other sites More sharing options...
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