Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 My dear husband has hallucinations, but not as bad you describe. He usually has them at night, and he can have as many as 4 or 5 visitors at a time. But, he has seen cats in the house as well as a tiger one time. He is never afraid. One time he " woke up " to find himself fighting one. He was sitting on the end of the bed flailing his arms. He usually tells them to " go home " and they disappear. He had a bad day today. Got very angry with someone on the computer who was terribly ugly, and out of line, then this afternoon I put on a tape of my daddy playing the guitar (he played beautifully) and My husband sat here crying like a baby. It was a hard day all the way around. He said he guessed he needed to cry. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May In a message dated 3/19/2006 11:42:50 PM Central Standard Time, lndedge@... writes: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 My mother started in the very same way, having hallucinations about people camping on the deck or out in the yard. My dad would have to go out and tell them it was time to go home. She would also see visions in the clouds of religious sort. It never seemed to bother her that we didn't see them, but we did finally have to get her on some medication that did away with them > > Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? > > > > --------------------------------- > On Yahoo!7 > Messenger: Make free PC-to-PC calls to your friends overseas. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Hi , The hallucinations you describe are all so familiar to us here. Has your FIL been prescribed Seroquel? It is an atypical anti-psychotic which does help with the hallucinations. The trick is to take a low dose and slowly increase if needed. My mother took this med for nearly two years and it did help though we had to give her a very low dose or else she slept all day and night. The house he is talking about could be one he lived in as a child. Hang in there. Courage Edge wrote: > Can someone please help me? My father in law has been recently > diagnosed with Lewy Body and my mother in law is finding it very > difficult to cope with the hullicinations. She is managing very well > in all other aspects of caring for him but not with the > hullicinations. On some days he has " visitors " all day long sometimes > as many as 6 people at a time. Things have gotten so bad that he > won't allow my mother in law to sit in her nightie and he doesn't like > her getting undressed because there are so many people in the house. > He keeps asking to go to the other house where there are no visitors - > we have no idea what house he is talking about. It isn't a house they > have lived in before. He gets very upset and agitated that the > " visitors " won't go and that we don't see them. Does have anyone else > have a similar experience or any advice to help my mother in law deal > with it? > > > > --------------------------------- > On Yahoo!7 > Messenger: Make free PC-to-PC calls to your friends overseas. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 , One of the first things I didn't learn about was to cover mirrors and windows at night when they glare. They see their reflection and this becomes " others. " Vision is a problem and if there are lots of bigger pictures around the house, they will glare also. We lost lots of visitors that way. My Mom (Died in '02 at 88) couldn't take meds and I just learned to live with them and let her know I couldn't see them. Many people here have all sorts of good ways to get rid of them. Let him know you have asked them to leave and ask him to tell you when they are gone. Or take him for a short drive and come back home and tell him you are at the other house. We just learn to be very creative. I am sure others will also let you know some of the drugs they were successful at getting their LO to take. Hope this helps. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org hullucinations Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Hi : My name is Debi and I care for my mom who is 78 and diagnosed with VAD and more than likely LBD. She has hallucinations all the time. At the beginning they were just sound and smell but the past 6 months she's had visitors in the house and people moving her from room to room, etc. It didn't bother her until the past couple of months when a regular, her mirror lady (my mom doesn't recognize herself in the mirror and thinks this is another woman) started arguing with her and telling her that things weren't her's and moving stuff around. We've tried covering all the mirrors but she's past that and sees this person constantly. It agitates her and she gets very angry. I think that she gets more angry with me and the aide because we cannot see this woman. The doctor put her on respirdal but it doesn't seem to be helping. I don't have any advice except to talk to his doctor. I have a hard time dealing with my mom's hallucinations. Hugs, Edge wrote: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? --------------------------------- On Yahoo!7 Messenger: Make free PC-to-PC calls to your friends overseas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Hi Debi Thank you so much for your email, the situation with your mum sounds very similar to my father in law he is on the same medication but it doesn't seem to help much. Also thank you for sharing with me about the mirror he hasn't done that yet but it does give us something to look out for. So once again thank you I will print out your email and pass it on to my mother in law. Hang in there Debra Kofol wrote: Hi : My name is Debi and I care for my mom who is 78 and diagnosed with VAD and more than likely LBD. She has hallucinations all the time. At the beginning they were just sound and smell but the past 6 months she's had visitors in the house and people moving her from room to room, etc. It didn't bother her until the past couple of months when a regular, her mirror lady (my mom doesn't recognize herself in the mirror and thinks this is another woman) started arguing with her and telling her that things weren't her's and moving stuff around. We've tried covering all the mirrors but she's past that and sees this person constantly. It agitates her and she gets very angry. I think that she gets more angry with me and the aide because we cannot see this woman. The doctor put her on respirdal but it doesn't seem to be helping. I don't have any advice except to talk to his doctor. I have a hard time dealing with my mom's hallucinations. Hugs, Edge wrote: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? --------------------------------- On Yahoo!7 Messenger: Make free PC-to-PC calls to your friends overseas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Hi Donna Thanks for your suggestion about the going for a drive and covering the windows and mirrors, we hadn't thought of that. I will suggest to my mother in law that she gives it a try. Donna Mido wrote: , One of the first things I didn't learn about was to cover mirrors and windows at night when they glare. They see their reflection and this becomes " others. " Vision is a problem and if there are lots of bigger pictures around the house, they will glare also. We lost lots of visitors that way. My Mom (Died in '02 at 88) couldn't take meds and I just learned to live with them and let her know I couldn't see them. Many people here have all sorts of good ways to get rid of them. Let him know you have asked them to leave and ask him to tell you when they are gone. Or take him for a short drive and come back home and tell him you are at the other house. We just learn to be very creative. I am sure others will also let you know some of the drugs they were successful at getting their LO to take. Hope this helps. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org hullucinations Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 So sorry to hear that your husband had had a bad day today. Does he have many bad days? It seems that my father in law now has more bad ones than good ones, mainly due to the " visitors " . In re to the tape of your dad playing the guitar do you think it was the fact that your dad was playing that touched your husband or the music? I'm wondering if music may help to calm my father in law when he becomes agitated Iward27663@... wrote: My dear husband has hallucinations, but not as bad you describe. He usually has them at night, and he can have as many as 4 or 5 visitors at a time. But, he has seen cats in the house as well as a tiger one time. He is never afraid. One time he " woke up " to find himself fighting one. He was sitting on the end of the bed flailing his arms. He usually tells them to " go home " and they disappear. He had a bad day today. Got very angry with someone on the computer who was terribly ugly, and out of line, then this afternoon I put on a tape of my daddy playing the guitar (he played beautifully) and My husband sat here crying like a baby. It was a hard day all the way around. He said he guessed he needed to cry. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May In a message dated 3/19/2006 11:42:50 PM Central Standard Time, lndedge@... writes: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 he is currently on resperdol ( I think that's how it's spelt) he was on another med prior to that one not sure which one I will check and also pass your email on to my mother in law so that she can investigate the drug your refer to with her GP Thanks gaat wrote: Hi , The hallucinations you describe are all so familiar to us here. Has your FIL been prescribed Seroquel? It is an atypical anti-psychotic which does help with the hallucinations. The trick is to take a low dose and slowly increase if needed. My mother took this med for nearly two years and it did help though we had to give her a very low dose or else she slept all day and night. The house he is talking about could be one he lived in as a child. Hang in there. Courage Edge wrote: > Can someone please help me? My father in law has been recently > diagnosed with Lewy Body and my mother in law is finding it very > difficult to cope with the hullicinations. She is managing very well > in all other aspects of caring for him but not with the > hullicinations. On some days he has " visitors " all day long sometimes > as many as 6 people at a time. Things have gotten so bad that he > won't allow my mother in law to sit in her nightie and he doesn't like > her getting undressed because there are so many people in the house. > He keeps asking to go to the other house where there are no visitors - > we have no idea what house he is talking about. It isn't a house they > have lived in before. He gets very upset and agitated that the > " visitors " won't go and that we don't see them. Does have anyone else > have a similar experience or any advice to help my mother in law deal > with it? > > > > --------------------------------- > On Yahoo!7 > Messenger: Make free PC-to-PC calls to your friends overseas. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 What was the medication? My father in law becomes very agitated by the hullicinations he has even upturned armchairs to get them to leave, he has also asked my mother in law to put away several items in the house so that the visitors don't steal them, he has also said that they have stolen or hidden things such as keys etc then gets very annoyed and spends ages looking for the " lost " or " stolen " items. He has even considered calling the police to get rid of them and wants to know his legal rights in regards to getting them out of the house. Nothing we do or say seems to help. julie_maxey wrote: My mother started in the very same way, having hallucinations about people camping on the deck or out in the yard. My dad would have to go out and tell them it was time to go home. She would also see visions in the clouds of religious sort. It never seemed to bother her that we didn't see them, but we did finally have to get her on some medication that did away with them > > Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? > > > > --------------------------------- > On Yahoo!7 > Messenger: Make free PC-to-PC calls to your friends overseas. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 : We found that taking Mum off sinemet (she was taking this for parkinson's symptoms) made Mum's hallucunations pretty much disappear. Is your FIL on sinemet by chance? My Mum is also on a low dose of seroquel for aggitation. She was originally on resperidol but her geriatrician told us that resperadol can aggrivate the parkinson's symptoms (stiffness etc.). Mum still had delusions about wanting to move back to the other place that looks exactly the same but somehow it is better. She thinks the seniors resisdence keeps moving her. The rooms always look the same and she says she wants the better room. (BTW they have nver moved her) We take it to mean she wants to go where she doesn't have LBD. from Cresswell ON Long distance CG to Margaret (Mum) aged 76 Lives at The Briton House, Memory Floor, Toronto DX Early Onset AD & PD approx 2002 DX LBD 01/2005 Current Meds: Seroquel, Aricept, LD ASA, Levothyroxin, Calcium Suppl. Was on: Sinemet, Excelon Was given Resperidol in NH for a few weeks (Feb '05) Haldol several times in Hospital Jan 05 Edge wrote: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? --------------------------------- On Yahoo!7 Messenger: Make free PC-to-PC calls to your friends overseas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 My father's music toughed a nerve in my husband, because everyone loved my father, and his music. I think he played better than Chet Atkins. He could make some of his tunes sound like two people playing at once. So beautiful! Anyway. We were on vacation, when daddy HAD to go fishing (commercial with nets) one night. I had fished with him for several years, and grew to love the fine man that he was. Well, --- The next day, he called and asked Don to pick him up at the fishhouse. He barely got up the stairs at the house, and came in and threw his hat on the freezer like he always did. But, Daddy was white as a sheet. He was shaky, and obviously very sick. When no one else was there, he said, " Imogene it feels as if a truck has hit my chest. " I said, " Daddy you are having a heart attack, please lets get you to the hospital. " He refused. He took a bath, and when he came out I helped him pull down his undershirt. He said he would be fine when Don and his wife got some Nitro, as they were off doing. I begged, Daddy please let us get you to a hospital. " He still wouldn't go. He said, " I can lay here and rest as well as I can at the hospital. " He talked about the biggest flounder he had ever caught, and acted like nothing was really wrong. He told me privately he didn't want to worry his wife. He obviously thought he would pull through. He laid down on a bed in the next room. Don heard a gurgle, and we rushed into the room to see daddy was purple and unconscious. We did mouth to mouth resuscitation, and the whole nine yards. We had taken CPR lessons, because of my Don's heart. We could not save him. It was a horrible traumatic experience. It took me more that three years to get over it. On the other hand, my mother was so much older, and had Dementia, so it wasn't as hard to take. We all had long enough time to adjust to the outcome. By then, I had come to accept death as an eventual thing. Daddy was only 70. It took us totally by surprise, when we were on vacation to see him. It was a horrible thing to go through. Daddy was full of fun and music, yet a very spiritual minded person. Don loved him dearly. The music reminded Don of the terrible trauma we experienced when Daddy died. It shook him up no end. Don had to make all the funeral arrangements. My siblings were out of town. That is why Don cried uncontrollably for a few minutes. I had to turn off the music, and soothe my wonderful loving, and tender, husband, who loved my daddy dearly, and went through a terrible trauma with me. The music was a reminder. Imogene In a message dated 3/20/2006 6:58:42 AM Central Standard Time, lndedge@... writes: So sorry to hear that your husband had had a bad day today. Does he have many bad days? It seems that my father in law now has more bad ones than good ones, mainly due to the " visitors " . In re to the tape of your dad playing the guitar do you think it was the fact that your dad was playing that touched your husband or the music? I'm wondering if music may help to calm my father in law when he becomes agitated Iward27663@... wrote: My dear husband has hallucinations, but not as bad you describe. He usually has them at night, and he can have as many as 4 or 5 visitors at a time. But, he has seen cats in the house as well as a tiger one time. He is never afraid. One time he " woke up " to find himself fighting one. He was sitting on the end of the bed flailing his arms. He usually tells them to " go home " and they disappear. He had a bad day today. Got very angry with someone on the computer who was terribly ugly, and out of line, then this afternoon I put on a tape of my daddy playing the guitar (he played beautifully) and My husband sat here crying like a baby. It was a hard day all the way around. He said he guessed he needed to cry. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May In a message dated 3/19/2006 11:42:50 PM Central Standard Time, lndedge@... writes: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Dear : My mom starting taking respirdal for the hallucinations. It's almost one month since sh's been started on a 1/2 tablet am and 1/2 tablet pm - 1mg total. It doesn't seem to have helped any. The hallucinations are still there and so is the paranoia. She constantly hids things saying that the woman that she sees will take it if she doesn't. She has misplaced her housekeys to the point that I cannot find them. Her wallet diseappeared for a day and she almost threw out her documents because she hid them in a garbage bag. She gets agitated and angry. She's going back to the neurologist to check-up on the change in her meds on Wednesday. I have no idea what he'll want to do. Edge wrote: What was the medication? My father in law becomes very agitated by the hullicinations he has even upturned armchairs to get them to leave, he has also asked my mother in law to put away several items in the house so that the visitors don't steal them, he has also said that they have stolen or hidden things such as keys etc then gets very annoyed and spends ages looking for the " lost " or " stolen " items. He has even considered calling the police to get rid of them and wants to know his legal rights in regards to getting them out of the house. Nothing we do or say seems to help. julie_maxey wrote: My mother started in the very same way, having hallucinations about people camping on the deck or out in the yard. My dad would have to go out and tell them it was time to go home. She would also see visions in the clouds of religious sort. It never seemed to bother her that we didn't see them, but we did finally have to get her on some medication that did away with them > > Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? > > > > --------------------------------- > On Yahoo!7 > Messenger: Make free PC-to-PC calls to your friends overseas. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 I understand you very well...my dad had these hallucinations for a longtime...he used to see people coming to our home, especially at evening times...Since he looked to the window and probably saw the reflex of his own figure, I tried to make him sit at table in such a place that he had a wall in front of him and not the window...Also trying to distract him for example making him watch tv, instead of looking out of the window... Some times it worked, some times not...Anyway we had to put him on Seroquel, since his hallucinations became very frequent, and I must say that this med was never really successful....Good luck.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 , I went to, " whatever works. " Hope any suggestion helps. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Re: hullucinations Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Sharon M, Thank you for your kind letter. My husband loves to listen to music. When he heard daddy's music he was just reminded of the heart wrenching experience we went through when we lost daddy. That is why he cried. He loved daddy dearly. I had a talk with Don's doctor today, and he was a very curt, and rude. I only talked with him for a couple of minutes. I had a list made up of questions that I read off to his assistant, and she in turn had given the list to the doctor. He didn't answer any of my questions, even though I tried to get answers. The doctor said my husband should see his Primary care physician for his problems. I said these problems only started after he started taking Risperdal. The doctor still wanted my husband to double his dose, and I told him that we were afraid to do that. So he said take 1/2 in the morning and a whole pill at night. I told him that I had been conversing with a doctor on an Alzheimer's list, and was told from all my husband's symptoms that they strongly suggested my husband had Lewey Body disease. The Doctor said, " Didn't we have this conversation before? " I said, " Yes, but you didn't tell us what you think. " He said, " Your husband Might have LBD. " Then he hung up on me. We are going to find another doctor for sure. My phone is loud because of my poor hearing, and so of course my husband heard all of our conversation. Sure made him angry the way the Doctor acted. He hasn't liked him from the beginning, but now he said we won't be staying with that doctor. My husband's new symptoms are; Short of breath (he already has severe heart trouble) Bad spells when he squats or bends over Dizzy Staggering walk Nasal drip Drooling More hallucinations. Now he has squirrels and cats and always has visitors at night Becoming incontinent These symptoms came up after the medication was started about three weeks ago. But, it is obvious that we will not get any help from that doctor. Don is seeing his Cardiologist soon, and we have an apt to see our primary care doctor next week. I am glad I have a place to discuss my concerns to others that understand. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. In a message dated 3/27/2006 11:33:51 PM Central Standard Time, LadySmilingAtU2@... writes: imogene, what a heart wrenching story of such love, forgive me for not responding sooner as i am usually a very talkative former caregiver, my daddy passed away in sept after we were here almost 3 years taking care of him 24/7 if music isnt good to calm your husband, how about some old cartoons, felix the cat, old mickey mouse, disneys fantasia, where the stories are short and comical and dont require alot of thought that each frame or 2 is a story in itslef. you can find ceollections of cartoons in some stores, like walmart *sorry i dont recall where you are from * they ahve something like 50 hours of cartoons on a dvd /vhs set. or even some silent movies or even collectoins of animal programs like wild kingdom, something just to keep his attention for a few minutes and if he looks away or wwanders like our lbd loved ones tend to do just a thought hugs sharon m From: Iward27663@... Date: 2006/03/20 Mon PM 08:18:39 EST To: LBDcaregivers Subject: Re: hullucinations My father's music toughed a nerve in my husband, because everyone loved my father, and his music. I think he played better than Chet Atkins. He could make some of his tunes sound like two people playing at once. So beautiful! Anyway. We were on vacation, when daddy HAD to go fishing (commercial with nets) one night. I had fished with him for several years, and grew to love the fine man that he was. Well, --- The next day, he called and asked Don to pick him up at the fishhouse. He barely got up the stairs at the house, and came in and threw his hat on the freezer like he always did. But, Daddy was white as a sheet. He was shaky, and obviously very sick. When no one else was there, he said, " Imogene it feels as if a truck has hit my chest. " I said, " Daddy you are having a heart attack, please lets get you to the hospital. " He refused. He took a bath, and when he came out I helped him pull down his undershirt. He said he would be fine when Don and his wife got some Nitro, as they were off doing. I begged, Daddy please let us get you to a hospital. " He still wouldn't go. He said, " I can lay here and rest as well as I can at the hospital. " He talked about the biggest flounder he had ever caught, and acted like nothing was really wrong. He told me privately he didn't want to worry his wife. He obviously thought he would pull through. He laid down on a bed in the next room. Don heard a gurgle, and we rushed into the room to see daddy was purple and unconscious. We did mouth to mouth resuscitation, and the whole nine yards. We had taken CPR lessons, because of my Don's heart. We could not save him. It was a horrible traumatic experience. It took me more that three years to get over it. On the other hand, my mother was so much older, and had Dementia, so it wasn't as hard to take. We all had long enough time to adjust to the outcome. By then, I had come to accept death as an eventual thing. Daddy was only 70. It took us totally by surprise, when we were on vacation to see him. It was a horrible thing to go through. Daddy was full of fun and music, yet a very spiritual minded person. Don loved him dearly. The music reminded Don of the terrible trauma we experienced when Daddy died. It shook him up no end. Don had to make all the funeral arrangements. My siblings were out of town. That is why Don cried uncontrollably for a few minutes. I had to turn off the music, and soothe my wonderful loving, and tender, husband, who loved my daddy dearly, and went through a terrible trauma with me. The music was a reminder. Imogene In a message dated 3/20/2006 6:58:42 AM Central Standard Time, lndedge@... writes: So sorry to hear that your husband had had a bad day today. Does he have many bad days? It seems that my father in law now has more bad ones than good ones, mainly due to the " visitors " . In re to the tape of your dad playing the guitar do you think it was the fact that your dad was playing that touched your husband or the music? I'm wondering if music may help to calm my father in law when he becomes agitated Iward27663@... wrote: My dear husband has hallucinations, but not as bad you describe. He usually has them at night, and he can have as many as 4 or 5 visitors at a time. But, he has seen cats in the house as well as a tiger one time. He is never afraid. One time he " woke up " to find himself fighting one. He was sitting on the end of the bed flailing his arms. He usually tells them to " go home " and they disappear. He had a bad day today. Got very angry with someone on the computer who was terribly ugly, and out of line, then this afternoon I put on a tape of my daddy playing the guitar (he played beautifully) and My husband sat here crying like a baby. It was a hard day all the way around. He said he guessed he needed to cry. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May In a message dated 3/19/2006 11:42:50 PM Central Standard Time, lndedge@... writes: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 imogene, what a heart wrenching story of such love, forgive me for not responding sooner as i am usually a very talkative former caregiver, my daddy passed away in sept after we were here almost 3 years taking care of him 24/7 if music isnt good to calm your husband, how about some old cartoons, felix the cat, old mickey mouse, disneys fantasia, where the stories are short and comical and dont require alot of thought that each frame or 2 is a story in itslef. you can find ceollections of cartoons in some stores, like walmart *sorry i dont recall where you are from * they ahve something like 50 hours of cartoons on a dvd /vhs set. or even some silent movies or even collectoins of animal programs like wild kingdom, something just to keep his attention for a few minutes and if he looks away or wwanders like our lbd loved ones tend to do just a thought hugs sharon m From: Iward27663@... Date: 2006/03/20 Mon PM 08:18:39 EST To: LBDcaregivers Subject: Re: hullucinations My father's music toughed a nerve in my husband, because everyone loved my father, and his music. I think he played better than Chet Atkins. He could make some of his tunes sound like two people playing at once. So beautiful! Anyway. We were on vacation, when daddy HAD to go fishing (commercial with nets) one night. I had fished with him for several years, and grew to love the fine man that he was. Well, --- The next day, he called and asked Don to pick him up at the fishhouse. He barely got up the stairs at the house, and came in and threw his hat on the freezer like he always did. But, Daddy was white as a sheet. He was shaky, and obviously very sick. When no one else was there, he said, " Imogene it feels as if a truck has hit my chest. " I said, " Daddy you are having a heart attack, please lets get you to the hospital. " He refused. He took a bath, and when he came out I helped him pull down his undershirt. He said he would be fine when Don and his wife got some Nitro, as they were off doing. I begged, Daddy please let us get you to a hospital. " He still wouldn't go. He said, " I can lay here and rest as well as I can at the hospital. " He talked about the biggest flounder he had ever caught, and acted like nothing was really wrong. He told me privately he didn't want to worry his wife. He obviously thought he would pull through. He laid down on a bed in the next room. Don heard a gurgle, and we rushed into the room to see daddy was purple and unconscious. We did mouth to mouth resuscitation, and the whole nine yards. We had taken CPR lessons, because of my Don's heart. We could not save him. It was a horrible traumatic experience. It took me more that three years to get over it. On the other hand, my mother was so much older, and had Dementia, so it wasn't as hard to take. We all had long enough time to adjust to the outcome. By then, I had come to accept death as an eventual thing. Daddy was only 70. It took us totally by surprise, when we were on vacation to see him. It was a horrible thing to go through. Daddy was full of fun and music, yet a very spiritual minded person. Don loved him dearly. The music reminded Don of the terrible trauma we experienced when Daddy died. It shook him up no end. Don had to make all the funeral arrangements. My siblings were out of town. That is why Don cried uncontrollably for a few minutes. I had to turn off the music, and soothe my wonderful loving, and tender, husband, who loved my daddy dearly, and went through a terrible trauma with me. The music was a reminder. Imogene In a message dated 3/20/2006 6:58:42 AM Central Standard Time, lndedge@... writes: So sorry to hear that your husband had had a bad day today. Does he have many bad days? It seems that my father in law now has more bad ones than good ones, mainly due to the " visitors " . In re to the tape of your dad playing the guitar do you think it was the fact that your dad was playing that touched your husband or the music? I'm wondering if music may help to calm my father in law when he becomes agitated Iward27663@... wrote: My dear husband has hallucinations, but not as bad you describe. He usually has them at night, and he can have as many as 4 or 5 visitors at a time. But, he has seen cats in the house as well as a tiger one time. He is never afraid. One time he " woke up " to find himself fighting one. He was sitting on the end of the bed flailing his arms. He usually tells them to " go home " and they disappear. He had a bad day today. Got very angry with someone on the computer who was terribly ugly, and out of line, then this afternoon I put on a tape of my daddy playing the guitar (he played beautifully) and My husband sat here crying like a baby. It was a hard day all the way around. He said he guessed he needed to cry. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May In a message dated 3/19/2006 11:42:50 PM Central Standard Time, lndedge@... writes: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 imogene, some of the listed symptoms could be drug reaction or even a combination of things as well as lbd, absolutely change doctors, that doctors is a horses' rear end if you ask me, and i am sure your husband which would be horrified and put the doctor in his place, keep lookig for the right doctor, we are lucky we have a wonderful md who is from hungary and has had doctor professors that taughthim caring and tenderness. he is a remarkable man and i still go ot him. keep a journal of all the changes, keep it daily note good and bad if possible make copies of it several days before don's appt (by the way my wonderful husband is donnie - and he is my gift from God) keep plugging along and i am sending you strength to help you in your search to find a doctor worthy of caring for you and Don hugs sharon m From: Iward27663@... Date: 2006/03/28 Tue AM 03:12:01 EST To: LBDcaregivers Subject: Re: hullucinations Sharon M, Thank you for your kind letter. My husband loves to listen to music. When he heard daddy's music he was just reminded of the heart wrenching experience we went through when we lost daddy. That is why he cried. He loved daddy dearly. I had a talk with Don's doctor today, and he was a very curt, and rude. I only talked with him for a couple of minutes. I had a list made up of questions that I read off to his assistant, and she in turn had given the list to the doctor. He didn't answer any of my questions, even though I tried to get answers. The doctor said my husband should see his Primary care physician for his problems. I said these problems only started after he started taking Risperdal. The doctor still wanted my husband to double his dose, and I told him that we were afraid to do that. So he said take 1/2 in the morning and a whole pill at night. I told him that I had been conversing with a doctor on an Alzheimer's list, and was told from all my husband's symptoms that they strongly suggested my husband had Lewey Body disease. The Doctor said, " Didn't we have this conversation before? " I said, " Yes, but you didn't tell us what you think. " He said, " Your husband Might have LBD. " Then he hung up on me. We are going to find another doctor for sure. My phone is loud because of my poor hearing, and so of course my husband heard all of our conversation. Sure made him angry the way the Doctor acted. He hasn't liked him from the beginning, but now he said we won't be staying with that doctor. My husband's new symptoms are; Short of breath (he already has severe heart trouble) Bad spells when he squats or bends over Dizzy Staggering walk Nasal drip Drooling More hallucinations. Now he has squirrels and cats and always has visitors at night Becoming incontinent These symptoms came up after the medication was started about three weeks ago. But, it is obvious that we will not get any help from that doctor. Don is seeing his Cardiologist soon, and we have an apt to see our primary care doctor next week. I am glad I have a place to discuss my concerns to others that understand. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. In a message dated 3/27/2006 11:33:51 PM Central Standard Time, LadySmilingAtU2@... writes: imogene, what a heart wrenching story of such love, forgive me for not responding sooner as i am usually a very talkative former caregiver, my daddy passed away in sept after we were here almost 3 years taking care of him 24/7 if music isnt good to calm your husband, how about some old cartoons, felix the cat, old mickey mouse, disneys fantasia, where the stories are short and comical and dont require alot of thought that each frame or 2 is a story in itslef. you can find ceollections of cartoons in some stores, like walmart *sorry i dont recall where you are from * they ahve something like 50 hours of cartoons on a dvd /vhs set. or even some silent movies or even collectoins of animal programs like wild kingdom, something just to keep his attention for a few minutes and if he looks away or wwanders like our lbd loved ones tend to do just a thought hugs sharon m From: Iward27663@... Date: 2006/03/20 Mon PM 08:18:39 EST To: LBDcaregivers Subject: Re: hullucinations My father's music toughed a nerve in my husband, because everyone loved my father, and his music. I think he played better than Chet Atkins. He could make some of his tunes sound like two people playing at once. So beautiful! Anyway. We were on vacation, when daddy HAD to go fishing (commercial with nets) one night. I had fished with him for several years, and grew to love the fine man that he was. Well, --- The next day, he called and asked Don to pick him up at the fishhouse. He barely got up the stairs at the house, and came in and threw his hat on the freezer like he always did. But, Daddy was white as a sheet. He was shaky, and obviously very sick. When no one else was there, he said, " Imogene it feels as if a truck has hit my chest. " I said, " Daddy you are having a heart attack, please lets get you to the hospital. " He refused. He took a bath, and when he came out I helped him pull down his undershirt. He said he would be fine when Don and his wife got some Nitro, as they were off doing. I begged, Daddy please let us get you to a hospital. " He still wouldn't go. He said, " I can lay here and rest as well as I can at the hospital. " He talked about the biggest flounder he had ever caught, and acted like nothing was really wrong. He told me privately he didn't want to worry his wife. He obviously thought he would pull through. He laid down on a bed in the next room. Don heard a gurgle, and we rushed into the room to see daddy was purple and unconscious. We did mouth to mouth resuscitation, and the whole nine yards. We had taken CPR lessons, because of my Don's heart. We could not save him. It was a horrible traumatic experience. It took me more that three years to get over it. On the other hand, my mother was so much older, and had Dementia, so it wasn't as hard to take. We all had long enough time to adjust to the outcome. By then, I had come to accept death as an eventual thing. Daddy was only 70. It took us totally by surprise, when we were on vacation to see him. It was a horrible thing to go through. Daddy was full of fun and music, yet a very spiritual minded person. Don loved him dearly. The music reminded Don of the terrible trauma we experienced when Daddy died. It shook him up no end. Don had to make all the funeral arrangements. My siblings were out of town. That is why Don cried uncontrollably for a few minutes. I had to turn off the music, and soothe my wonderful loving, and tender, husband, who loved my daddy dearly, and went through a terrible trauma with me. The music was a reminder. Imogene In a message dated 3/20/2006 6:58:42 AM Central Standard Time, lndedge@... writes: So sorry to hear that your husband had had a bad day today. Does he have many bad days? It seems that my father in law now has more bad ones than good ones, mainly due to the " visitors " . In re to the tape of your dad playing the guitar do you think it was the fact that your dad was playing that touched your husband or the music? I'm wondering if music may help to calm my father in law when he becomes agitated Iward27663@... wrote: My dear husband has hallucinations, but not as bad you describe. He usually has them at night, and he can have as many as 4 or 5 visitors at a time. But, he has seen cats in the house as well as a tiger one time. He is never afraid. One time he " woke up " to find himself fighting one. He was sitting on the end of the bed flailing his arms. He usually tells them to " go home " and they disappear. He had a bad day today. Got very angry with someone on the computer who was terribly ugly, and out of line, then this afternoon I put on a tape of my daddy playing the guitar (he played beautifully) and My husband sat here crying like a baby. It was a hard day all the way around. He said he guessed he needed to cry. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May In a message dated 3/19/2006 11:42:50 PM Central Standard Time, lndedge@... writes: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 That is frustrating dealing with doctors who don't seem to want to help... I went through the same thing and found new doctors for my mother. I hope that you find a new doctor real soon to get a 2nd opinion - especially if these new symptoms are actually caused by the medication, you'd want to know so you can stop them... > > > My dear husband has hallucinations, but not as bad you describe. He > usually > has them at night, and he can have as many as 4 or 5 visitors at a time. > But, > he has seen cats in the house as well as a tiger one time. He is never > afraid. One time he " woke up " to find himself fighting one. He was sitting > on the > end of the bed flailing his arms. He usually tells them to " go home " and > they > disappear. > > He had a bad day today. Got very angry with someone on the computer who > was > terribly ugly, and out of line, then this afternoon I put on a tape of my > daddy playing the guitar (he played beautifully) and My husband sat here > crying > like a baby. It was a hard day all the way around. He said he guessed he > needed to cry. > Imogene > > Caregiver for my True Texas Gentleman husband of 35 years. He has AD and > possibly LBD, is Taking Aricept and Risperdal. Age 72 in May > > > In a message dated 3/19/2006 11:42:50 PM Central Standard Time, > lndedge@... writes: > > Can someone please help me? My father in law has been recently diagnosed > with Lewy Body and my mother in law is finding it very difficult to cope > with > the hullicinations. She is managing very well in all other aspects of > caring > for him but not with the hullicinations. On some days he has " visitors " > all > day long sometimes as many as 6 people at a time. Things have gotten so > bad > that he won't allow my mother in law to sit in her nightie and he doesn't > like her getting undressed because there are so many people in the house. > He > keeps asking to go to the other house where there are no visitors - we > have > no > idea what house he is talking about. It isn't a house they have lived in > before. He gets very upset and agitated that the " visitors " won't go and > that > we don't see them. Does have anyone else have a similar experience or any > advice to help my mother in law deal with it? > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > Welcome to LBDcaregivers. > > > > > > > > Caregiver for my True Texas Gentleman husband of 35 years. He has AD and > possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. > > > [Non-text portions of this message have been removed] > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Sharon M. We are not giving up on finding a good Doctor. We will see our Primary Care Doctor (who is helpful and kind) on April 5th, and he can tell us who to see, or actually refer us. But, in the mean time we are doing some research on our own. Imogene In a message dated 3/28/2006 9:22:44 PM Central Standard Time, LadySmilingAtU2@... writes: imogene, some of the listed symptoms could be drug reaction or even a combination of things as well as lbd, absolutely change doctors, that doctors is a horses' rear end if you ask me, and i am sure your husband which would be horrified and put the doctor in his place, keep lookig for the right doctor, we are lucky we have a wonderful md who is from hungary and has had doctor professors that taughthim caring and tenderness. he is a remarkable man and i still go ot him. keep a journal of all the changes, keep it daily note good and bad if possible make copies of it several days before don's appt (by the way my wonderful husband is donnie - and he is my gift from God) keep plugging along and i am sending you strength to help you in your search to find a doctor worthy of caring for you and Don hugs sharon m From: Iward27663@... Date: 2006/03/28 Tue AM 03:12:01 EST To: LBDcaregivers Subject: Re: hullucinations Sharon M, Thank you for your kind letter. My husband loves to listen to music. When he heard daddy's music he was just reminded of the heart wrenching experience we went through when we lost daddy. That is why he cried. He loved daddy dearly. I had a talk with Don's doctor today, and he was a very curt, and rude. I only talked with him for a couple of minutes. I had a list made up of questions that I read off to his assistant, and she in turn had given the list to the doctor. He didn't answer any of my questions, even though I tried to get answers. The doctor said my husband should see his Primary care physician for his problems. I said these problems only started after he started taking Risperdal. The doctor still wanted my husband to double his dose, and I told him that we were afraid to do that. So he said take 1/2 in the morning and a whole pill at night. I told him that I had been conversing with a doctor on an Alzheimer's list, and was told from all my husband's symptoms that they strongly suggested my husband had Lewey Body disease. The Doctor said, " Didn't we have this conversation before? " I said, " Yes, but you didn't tell us what you think. " He said, " Your husband Might have LBD. " Then he hung up on me. We are going to find another doctor for sure. My phone is loud because of my poor hearing, and so of course my husband heard all of our conversation. Sure made him angry the way the Doctor acted. He hasn't liked him from the beginning, but now he said we won't be staying with that doctor. My husband's new symptoms are; Short of breath (he already has severe heart trouble) Bad spells when he squats or bends over Dizzy Staggering walk Nasal drip Drooling More hallucinations. Now he has squirrels and cats and always has visitors at night Becoming incontinent These symptoms came up after the medication was started about three weeks ago. But, it is obvious that we will not get any help from that doctor. Don is seeing his Cardiologist soon, and we have an apt to see our primary care doctor next week. I am glad I have a place to discuss my concerns to others that understand. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. In a message dated 3/27/2006 11:33:51 PM Central Standard Time, LadySmilingAtU2@... writes: imogene, what a heart wrenching story of such love, forgive me for not responding sooner as i am usually a very talkative former caregiver, my daddy passed away in sept after we were here almost 3 years taking care of him 24/7 if music isnt good to calm your husband, how about some old cartoons, felix the cat, old mickey mouse, disneys fantasia, where the stories are short and comical and dont require alot of thought that each frame or 2 is a story in itslef. you can find ceollections of cartoons in some stores, like walmart *sorry i dont recall where you are from * they ahve something like 50 hours of cartoons on a dvd /vhs set. or even some silent movies or even collectoins of animal programs like wild kingdom, something just to keep his attention for a few minutes and if he looks away or wwanders like our lbd loved ones tend to do just a thought hugs sharon m From: Iward27663@... Date: 2006/03/20 Mon PM 08:18:39 EST To: LBDcaregivers Subject: Re: hullucinations My father's music toughed a nerve in my husband, because everyone loved my father, and his music. I think he played better than Chet Atkins. He could make some of his tunes sound like two people playing at once. So beautiful! Anyway. We were on vacation, when daddy HAD to go fishing (commercial with nets) one night. I had fished with him for several years, and grew to love the fine man that he was. Well, --- The next day, he called and asked Don to pick him up at the fishhouse. He barely got up the stairs at the house, and came in and threw his hat on the freezer like he always did. But, Daddy was white as a sheet. He was shaky, and obviously very sick. When no one else was there, he said, " Imogene it feels as if a truck has hit my chest. " I said, " Daddy you are having a heart attack, please lets get you to the hospital. " He refused. He took a bath, and when he came out I helped him pull down his undershirt. He said he would be fine when Don and his wife got some Nitro, as they were off doing. I begged, Daddy please let us get you to a hospital. " He still wouldn't go. He said, " I can lay here and rest as well as I can at the hospital. " He talked about the biggest flounder he had ever caught, and acted like nothing was really wrong. He told me privately he didn't want to worry his wife. He obviously thought he would pull through. He laid down on a bed in the next room. Don heard a gurgle, and we rushed into the room to see daddy was purple and unconscious. We did mouth to mouth resuscitation, and the whole nine yards. We had taken CPR lessons, because of my Don's heart. We could not save him. It was a horrible traumatic experience. It took me more that three years to get over it. On the other hand, my mother was so much older, and had Dementia, so it wasn't as hard to take. We all had long enough time to adjust to the outcome. By then, I had come to accept death as an eventual thing. Daddy was only 70. It took us totally by surprise, when we were on vacation to see him. It was a horrible thing to go through. Daddy was full of fun and music, yet a very spiritual minded person. Don loved him dearly. The music reminded Don of the terrible trauma we experienced when Daddy died. It shook him up no end. Don had to make all the funeral arrangements. My siblings were out of town. That is why Don cried uncontrollably for a few minutes. I had to turn off the music, and soothe my wonderful loving, and tender, husband, who loved my daddy dearly, and went through a terrible trauma with me. The music was a reminder. Imogene In a message dated 3/20/2006 6:58:42 AM Central Standard Time, lndedge@... writes: So sorry to hear that your husband had had a bad day today. Does he have many bad days? It seems that my father in law now has more bad ones than good ones, mainly due to the " visitors " . In re to the tape of your dad playing the guitar do you think it was the fact that your dad was playing that touched your husband or the music? I'm wondering if music may help to calm my father in law when he becomes agitated Iward27663@... wrote: My dear husband has hallucinations, but not as bad you describe. He usually has them at night, and he can have as many as 4 or 5 visitors at a time. But, he has seen cats in the house as well as a tiger one time. He is never afraid. One time he " woke up " to find himself fighting one. He was sitting on the end of the bed flailing his arms. He usually tells them to " go home " and they disappear. He had a bad day today. Got very angry with someone on the computer who was terribly ugly, and out of line, then this afternoon I put on a tape of my daddy playing the guitar (he played beautifully) and My husband sat here crying like a baby. It was a hard day all the way around. He said he guessed he needed to cry. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May In a message dated 3/19/2006 11:42:50 PM Central Standard Time, lndedge@... writes: Can someone please help me? My father in law has been recently diagnosed with Lewy Body and my mother in law is finding it very difficult to cope with the hullicinations. She is managing very well in all other aspects of caring for him but not with the hullicinations. On some days he has " visitors " all day long sometimes as many as 6 people at a time. Things have gotten so bad that he won't allow my mother in law to sit in her nightie and he doesn't like her getting undressed because there are so many people in the house. He keeps asking to go to the other house where there are no visitors - we have no idea what house he is talking about. It isn't a house they have lived in before. He gets very upset and agitated that the " visitors " won't go and that we don't see them. Does have anyone else have a similar experience or any advice to help my mother in law deal with it? [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Yahoo! Groups Links a smile a day, keeps the meanies away!!!! Welcome to LBDcaregivers. Yahoo! Groups Links [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Yahoo! Groups Links a smile a day, keeps the meanies away!!!! Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 As of TODAY we have a new Doctor for my husband. We will see him on the 10th of April. In the mean time, I don't know whether to taper off the Medication he is on, or not. We got a whole new $110.00 worth last night, but, right now, my husband is showing signs of heart failure. Bloated belly, swollen ankles, and shortness of breath. This has me concerned. I will be talking to, yet, another doctor soon. At least for some insight into what to do. Imogene In a message dated 3/29/2006 6:28:21 AM Central Standard Time, octoryrose@... writes: That is frustrating dealing with doctors who don't seem to want to help... I went through the same thing and found new doctors for my mother. I hope that you find a new doctor real soon to get a 2nd opinion - especially if these new symptoms are actually caused by the medication, you'd want to know so you can stop them... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 If all these changes seem to have happened when the medication started, I would taper him off it. Without it he has hallucinations, but it sounds like this is worse than the hallucinations. I'm no doctor, but I feel your concern over the posts. And make sure he is not dehydrated... > > > As of TODAY we have a new Doctor for my husband. We will see him on the 10th > of April. > > In the mean time, I don't know whether to taper off the Medication he is on, > or not. We got a whole new $110.00 worth last night, but, right now, my > husband is showing signs of heart failure. Bloated belly, swollen ankles, and > shortness of breath. This has me concerned. > > I will be talking to, yet, another doctor soon. At least for some insight > into what to do. > Imogene > > > In a message dated 3/29/2006 6:28:21 AM Central Standard Time, > octoryrose@... writes: > > That is frustrating dealing with doctors who don't seem to want to > help... I went through the same thing and found new doctors for my > mother. I hope that you find a new doctor real soon to get a 2nd > opinion - especially if these new symptoms are actually caused by the > medication, you'd want to know so you can stop them... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 And CONGRATS on finding a new doctor - hopefully he's one who has heard about LBD... > > > As of TODAY we have a new Doctor for my husband. We will see him on the 10th > of April. > > In the mean time, I don't know whether to taper off the Medication he is on, > or not. We got a whole new $110.00 worth last night, but, right now, my > husband is showing signs of heart failure. Bloated belly, swollen ankles, and > shortness of breath. This has me concerned. > > I will be talking to, yet, another doctor soon. At least for some insight > into what to do. > Imogene > > > In a message dated 3/29/2006 6:28:21 AM Central Standard Time, > octoryrose@... writes: > > That is frustrating dealing with doctors who don't seem to want to > help... I went through the same thing and found new doctors for my > mother. I hope that you find a new doctor real soon to get a 2nd > opinion - especially if these new symptoms are actually caused by the > medication, you'd want to know so you can stop them... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Yeah right on!! We are VERy glad to have a different doctor too. Just because I went to the doctor's office twice yeaterday, my husband's bloating and swelling went away. Imogene--- Liar, liar pants on fire. No! actually he was a bloated sight, (days before). We see the doctor on the fifth, and the Neurologist on the tenth, so that is not too long to wait. If he bloats and swells again, I will take him to ER. Yesterday, I didn't see a crises in the making. It was leaving, not getting worse. Imogene In a message dated 3/31/2006 2:36:47 PM Central Standard Time, LadySmilingAtU2@... writes: hip hip hooray From: Iward27663@... Date: 2006/03/29 Wed PM 04:28:16 EST To: LBDcaregivers Subject: Re: Re: hullucinations As of TODAY we have a new Doctor for my husband. We will see him on the 10th of April. In the mean time, I don't know whether to taper off the Medication he is on, or not. We got a whole new $110.00 worth last night, but, right now, my husband is showing signs of heart failure. Bloated belly, swollen ankles, and shortness of breath. This has me concerned. I will be talking to, yet, another doctor soon. At least for some insight into what to do. Imogene In a message dated 3/29/2006 6:28:21 AM Central Standard Time, octoryrose@... writes: That is frustrating dealing with doctors who don't seem to want to help... I went through the same thing and found new doctors for my mother. I hope that you find a new doctor real soon to get a 2nd opinion - especially if these new symptoms are actually caused by the medication, you'd want to know so you can stop them... [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 hip hip hooray From: Iward27663@... Date: 2006/03/29 Wed PM 04:28:16 EST To: LBDcaregivers Subject: Re: Re: hullucinations As of TODAY we have a new Doctor for my husband. We will see him on the 10th of April. In the mean time, I don't know whether to taper off the Medication he is on, or not. We got a whole new $110.00 worth last night, but, right now, my husband is showing signs of heart failure. Bloated belly, swollen ankles, and shortness of breath. This has me concerned. I will be talking to, yet, another doctor soon. At least for some insight into what to do. Imogene In a message dated 3/29/2006 6:28:21 AM Central Standard Time, octoryrose@... writes: That is frustrating dealing with doctors who don't seem to want to help... I went through the same thing and found new doctors for my mother. I hope that you find a new doctor real soon to get a 2nd opinion - especially if these new symptoms are actually caused by the medication, you'd want to know so you can stop them... Quote Link to comment Share on other sites More sharing options...
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