Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Hi Alyssa...Welcome to the group. I'm so sorry you have to join us though. I am a fledgling member myself and am so impressed by the information that the " professional " members can provide. I am sure they will be much more helpful since many have their loved ones living with them as well. I could not handle having my father (age 58) living with me. Like you, I have young children at home (4 to be exact) and I am only (can I say " only? " ) 37. If it makes you feel better to know you are not alone, then I am here for you. My dad went through almost exactly your dad's situation last summer. I can entirely relate to your frustration and anger. I lost my sister three years ago to breast cancer and my dad was divorced, so I am also the main person responsible for my dad. For months he went from emergency rooms to a mental hospital where they drugged him up so badly he almost died. Luckily he came out of it but it took weeks for the medications to wear off. Currently he is on Seroquel 3x a day and has had good luck with it. His hallucinations and delusions have seemed to have gone away. He's still confused and often " child like " but he is not terrified as he was before of " the strangers in his house trying to take him to the dark side. " While I tried to keep him near me in CA, he simply couldn't afford it. My uncle (his brother) was kind enough to take him into his Washington home. I warned my uncle that my dad is high maintenance and can be tiring. It's been 4 months and my uncle is seeing how hard it is...and my uncle is 55 and has NO children in the house! He and my aunt are contemplating putting my dad in assisted living in Oregon. It's just so hard. To make your situation worse, you are mad at your dad for your childhood. You are thinking " Why should I bother taking care of you? " but all the knowing you should do it. I totally understand. My dad wasn't a bad dad, but he was a very selfish and materialistic man. He left my mom when I was 12 and I didn't see him very often for years after that. When I was running all over CA trying to take care of my dad's belongings, dogs, finances, health, dr. appointments, insurance, medications, etc...I got a little resentful. Then it would be when he was having tender moments (very common, I think) that he would cry and tell me how much he loved me and how he was scared...and I would forgot about it all. I am not sure if your dad is there yet, but he may get to that point. But it will change again and he will ask me where all his money is (implying that I'm taking it..a joke, considering there is so little to take) and why I won't let him drive...etc..The emotions roller coaster. It is very tiring. You definitely need to get your dad into a nursing home or assisted living facility. I would not recommend having him live with you with two small kids at home. It's already too stressful just with the kids. Is there anything even an hour from you? Since you said local places had huge waiting lists? How far is Florida from your home in Virginia? Could you stay where you are but move him there? Or is that too far? Is there anyone else around to help? Could you place him farther away and still put him on all the waiting lists of the closer facilities? Then you could move him once a room is available? I know this is the most challenging part of it all. I had a horrible time trying to place my dad...not only was he aggressive but he was too young. No facility wanted him. Luckily it has worked out so far and he's not aggressive anymore. From what I've learned from this wonderful group is that LBD is rather unpredictable. It has no definite stages and often patients can become worse then better then worse, etc..I've been told to look at stage of Alzheimer's for general expectations, but that again, LBD, is often not as predictable. While my dad is probably mid-way through it...He's still got full body control, walks with no assistance, but is rather confused and emotional. I believe he will get worse. First his body will start to break down...possible tripping and falling. Then more confused. Then large body functions slow to no walking, unable to dress and little speech. Then no speaking or ability to feed self and eventually death. Again, I'm no expert as many on this group are. Just an idea as to what you may expect. I would ask another doctor about the seroquel. It has worked for my dad. And get another doctor if you can. Maybe another neurologist, general physician and a psychiatrist?? It was a psychiatrist in one of the nursing homes that really helped me understand the disease better...plus, this group helps a lot too. I am not sure if I helped at all. Like I said, I'm new to the group. My dad was just diagnosed in July of 2005 (although I think he's had it for at least 3 years). I don't often post emails because I am not sure how much I know compare to others, but I can clearly relate to everyone's frustrations, yet love for their family. Take Care, in CA Alyssa Greek wrote: Hello everyone, I just joined this group a couple of days ago and I am so glad to have finally found some other people who are dealing with this craziness too...My name is Alyssa, I'm 33 years old and I have been taking care of my dad for the last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex and Amantadine, was able to continue working and lived by himself until last April. Then he started seeing aliens. I mean he really went off the deep end. He even concocted this brilliant story to go along with the hallucinations about how there was a parallel earth that was older than this one that we are on, and it took 7 days to get there but the aliens wouldn't let him go there for whatever reason...Then he insisted that they were taking my car apart in the driveway and were installing a rocket launcher in my trunk, he even picked up a floor lamp and held it like it was a gun and told me to " stand back! This thing's got a hell of a recoil! " The day before, he actually held one of his best friends at gunpoint! (Yes, he had guns all around at this time, he had been an avid hunter, and no, there are no weapons around him now) but still, all this came out of the blue. We ended up having to commit him, and he stayed in a psych ward for 21 days. We were told that it was just an adverse reaction to the PD meds he had been on, and when he got out, he seemed better, mentally at least- he could barely walk from the myriad of drugs they had tried out on him. I took him to live with me in Florida and subsequently lost my job and had to quit school because of this. Will somebody please write to me and tell me if this is the norm? Dad's neurologist doesn't give a flip about him, never returns my calls, he's apparently one of those Dr.s who are in it for the $$. He just recently re-diagnosed dad with LBD about a month ago, and when I asked him what that meant (ie.- how is it treated, what can we expect?) he just looked at me and shook his head and said that it would be ugly. I feel like I'm losing my mind too, I have two children, 4 and 10, and taking dad on in the first place was hard because he was very abusive to my sister and I when we were young. He was a real cad, cheated on my mother for the last 10 years of their marriage, and my family thinks I'm nuts for taking him in, they really don't want anything much to do with him, they feel like he is reaping what he sowed, or that it's Karma or something of the like but there is nobody else to do it and he is my father.... Right now, I'm about to go pick him up from a mental hospital because his insurance won't pay for him to stay any longer (he's been there a week today). And get this- the people there didn't even know what Lewy Body Dementia is...I had to write it down for the nurse and tell her to Google it and to make sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly says on their website, NOT to give it to elderly patients who are sufferring from dementia related psychosis, and every other DLB website that I have seen has had some sort of precautionary statement warning that DLB patients are especially at risk of severe adverse reactions to neuroleptics. I tell this to the Dr.at the hospital and he says that Seroquel is the drug that they are authorized to use to treat hallucinations and that his psychiatrist can monitor how the drug will affect him from here on out. Do any of you know anything about the effectiveness (or lack thereof) of Seroquel? Any suggestions would be appreciated. I also found out today that to get him into a nursing home or asst living facility around here, I would need to get on a waiting list and right now the wait is more than a year. (I live in very very rural Courtland, VA) I'm thinking of moving back to FL where there are a lot more nursing homes and such... You are all in my prayers. Alyssa Greek --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Dear Alyssa, I think it is very important for you to take into account how your father's illness will affect your young children. While it is admirable of you to want to be of some help, you might be wise to listen to your family members about this. You can be an advocate without becoming a caregiver, and often you can be much more effective in this role. One thing most of us caregivers don't have is perspective. We are often too close to the problem to handle it well. Your father will be eligible for programs more immediately if he has no assets, and no one to jump in and take responsibility for him. You are wise to find information through the website on drugs and ask advice here, but to try to take him on yourself, is going to take you down a road of no return. You can still have a merciful heart and love him because he is your father, without sacrificing your family in the process. Those kids need you. New to Lewyville Hello everyone, I just joined this group a couple of days ago and I am so glad to have finally found some other people who are dealing with this craziness too...My name is Alyssa, I'm 33 years old and I have been taking care of my dad for the last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex and Amantadine, was able to continue working and lived by himself until last April. Then he started seeing aliens. I mean he really went off the deep end. He even concocted this brilliant story to go along with the hallucinations about how there was a parallel earth that was older than this one that we are on, and it took 7 days to get there but the aliens wouldn't let him go there for whatever reason...Then he insisted that they were taking my car apart in the driveway and were installing a rocket launcher in my trunk, he even picked up a floor lamp and held it like it was a gun and told me to " stand back! This thing's got a hell of a recoil! " The day before, he actually held one of his best friends at gunpoint! (Yes, he had guns all around at this time, he had been an avid hunter, and no, there are no weapons around him now) but still, all this came out of the blue. We ended up having to commit him, and he stayed in a psych ward for 21 days. We were told that it was just an adverse reaction to the PD meds he had been on, and when he got out, he seemed better, mentally at least- he could barely walk from the myriad of drugs they had tried out on him. I took him to live with me in Florida and subsequently lost my job and had to quit school because of this. Will somebody please write to me and tell me if this is the norm? Dad's neurologist doesn't give a flip about him, never returns my calls, he's apparently one of those Dr.s who are in it for the $$. He just recently re-diagnosed dad with LBD about a month ago, and when I asked him what that meant (ie.- how is it treated, what can we expect?) he just looked at me and shook his head and said that it would be ugly. I feel like I'm losing my mind too, I have two children, 4 and 10, and taking dad on in the first place was hard because he was very abusive to my sister and I when we were young. He was a real cad, cheated on my mother for the last 10 years of their marriage, and my family thinks I'm nuts for taking him in, they really don't want anything much to do with him, they feel like he is reaping what he sowed, or that it's Karma or something of the like but there is nobody else to do it and he is my father.... Right now, I'm about to go pick him up from a mental hospital because his insurance won't pay for him to stay any longer (he's been there a week today). And get this- the people there didn't even know what Lewy Body Dementia is...I had to write it down for the nurse and tell her to Google it and to make sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly says on their website, NOT to give it to elderly patients who are sufferring from dementia related psychosis, and every other DLB website that I have seen has had some sort of precautionary statement warning that DLB patients are especially at risk of severe adverse reactions to neuroleptics. I tell this to the Dr.at the hospital and he says that Seroquel is the drug that they are authorized to use to treat hallucinations and that his psychiatrist can monitor how the drug will affect him from here on out. Do any of you know anything about the effectiveness (or lack thereof) of Seroquel? Any suggestions would be appreciated. I also found out today that to get him into a nursing home or asst living facility around here, I would need to get on a waiting list and right now the wait is more than a year. (I live in very very rural Courtland, VA) I'm thinking of moving back to FL where there are a lot more nursing homes and such... You are all in my prayers. Alyssa Greek --------------------------------- How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 , You wrote an excellent letter to, Alyssa. You told your story, and that is what we are all looking for. We are learning from each other's experiences. I am fairly new to the List and I do welcome both of you. I appreciated your input very much. 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 4/11/2006 1:49:25 AM Central Daylight Time, cmarzocco@... writes: Hi Alyssa...Welcome to the group. I'm so sorry you have to join us though. I am a fledgling member myself and am so impressed by the information that the " professional " members can provide. I am sure they will be much more helpful since many have their loved ones living with them as well. I could not handle having my father (age 58) living with me. Like you, I have young children at home (4 to be exact) and I am only (can I say " only? " ) 37. If it makes you feel better to know you are not alone, then I am here for you. My dad went through almost exactly your dad's situation last summer. I can entirely relate to your frustration and anger. I lost my sister three years ago to breast cancer and my dad was divorced, so I am also the main person responsible for my dad. For months he went from emergency rooms to a mental hospital where they drugged him up so badly he almost died. Luckily he came out of it but it took weeks for the medications to wear off. Currently he is on Seroquel 3x a day and has had good luck with it. His hallucinations and delusions have seemed to have gone away. He's still confused and often " child like " but he is not terrified as he was before of " the strangers in his house trying to take him to the dark side. " While I tried to keep him near me in CA, he simply couldn't afford it. My uncle (his brother) was kind enough to take him into his Washington home. I warned my uncle that my dad is high maintenance and can be tiring. It's been 4 months and my uncle is seeing how hard it is...and my uncle is 55 and has NO children in the house! He and my aunt are contemplating putting my dad in assisted living in Oregon. It's just so hard. To make your situation worse, you are mad at your dad for your childhood. You are thinking " Why should I bother taking care of you? " but all the knowing you should do it. I totally understand. My dad wasn't a bad dad, but he was a very selfish and materialistic man. He left my mom when I was 12 and I didn't see him very often for years after that. When I was running all over CA trying to take care of my dad's belongings, dogs, finances, health, dr. appointments, insurance, medications, etc...I got a little resentful. Then it would be when he was having tender moments (very common, I think) that he would cry and tell me how much he loved me and how he was scared...and I would forgot about it all. I am not sure if your dad is there yet, but he may get to that point. But it will change again and he will ask me where all his money is (implying that I'm taking it..a joke, considering there is so little to take) and why I won't let him drive...etc..The emotions roller coaster. It is very tiring. You definitely need to get your dad into a nursing home or assisted living facility. I would not recommend having him live with you with two small kids at home. It's already too stressful just with the kids. Is there anything even an hour from you? Since you said local places had huge waiting lists? How far is Florida from your home in Virginia? Could you stay where you are but move him there? Or is that too far? Is there anyone else around to help? Could you place him farther away and still put him on all the waiting lists of the closer facilities? Then you could move him once a room is available? I know this is the most challenging part of it all. I had a horrible time trying to place my dad...not only was he aggressive but he was too young. No facility wanted him. Luckily it has worked out so far and he's not aggressive anymore. From what I've learned from this wonderful group is that LBD is rather unpredictable. It has no definite stages and often patients can become worse then better then worse, etc..I've been told to look at stage of Alzheimer's for general expectations, but that again, LBD, is often not as predictable. While my dad is probably mid-way through it...He's still got full body control, walks with no assistance, but is rather confused and emotional. I believe he will get worse. First his body will start to break down...possible tripping and falling. Then more confused. Then large body functions slow to no walking, unable to dress and little speech. Then no speaking or ability to feed self and eventually death. Again, I'm no expert as many on this group are. Just an idea as to what you may expect. I would ask another doctor about the seroquel. It has worked for my dad. And get another doctor if you can. Maybe another neurologist, general physician and a psychiatrist?? It was a psychiatrist in one of the nursing homes that really helped me understand the disease better...plus, this group helps a lot too. I am not sure if I helped at all. Like I said, I'm new to the group. My dad was just diagnosed in July of 2005 (although I think he's had it for at least 3 years). I don't often post emails because I am not sure how much I know compare to others, but I can clearly relate to everyone's frustrations, yet love for their family. Take Care, in CA Alyssa Greek wrote: Hello everyone, I just joined this group a couple of days ago and I am so glad to have finally found some other people who are dealing with this craziness too...My name is Alyssa, I'm 33 years old and I have been taking care of my dad for the last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex and Amantadine, was able to continue working and lived by himself until last April. Then he started seeing aliens. I mean he really went off the deep end. He even concocted this brilliant story to go along with the hallucinations about how there was a parallel earth that was older than this one that we are on, and it took 7 days to get there but the aliens wouldn't let him go there for whatever reason...Then he insisted that they were taking my car apart in the driveway and were installing a rocket launcher in my trunk, he even picked up a floor lamp and held it like it was a gun and told me to " stand back! This thing's got a hell of a recoil! " The day before, he actually held one of his best friends at gunpoint! (Yes, he had guns all around at this time, he had been an avid hunter, and no, there are no weapons around him now) but still, all this came out of the blue. We ended up having to commit him, and he stayed in a psych ward for 21 days. We were told that it was just an adverse reaction to the PD meds he had been on, and when he got out, he seemed better, mentally at least- he could barely walk from the myriad of drugs they had tried out on him. I took him to live with me in Florida and subsequently lost my job and had to quit school because of this. Will somebody please write to me and tell me if this is the norm? Dad's neurologist doesn't give a flip about him, never returns my calls, he's apparently one of those Dr.s who are in it for the $$. He just recently re-diagnosed dad with LBD about a month ago, and when I asked him what that meant (ie.- how is it treated, what can we expect?) he just looked at me and shook his head and said that it would be ugly. I feel like I'm losing my mind too, I have two children, 4 and 10, and taking dad on in the first place was hard because he was very abusive to my sister and I when we were young. He was a real cad, cheated on my mother for the last 10 years of their marriage, and my family thinks I'm nuts for taking him in, they really don't want anything much to do with him, they feel like he is reaping what he sowed, or that it's Karma or something of the like but there is nobody else to do it and he is my father.... Right now, I'm about to go pick him up from a mental hospital because his insurance won't pay for him to stay any longer (he's been there a week today). And get this- the people there didn't even know what Lewy Body Dementia is...I had to write it down for the nurse and tell her to Google it and to make sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly says on their website, NOT to give it to elderly patients who are sufferring from dementia related psychosis, and every other DLB website that I have seen has had some sort of precautionary statement warning that DLB patients are especially at risk of severe adverse reactions to neuroleptics. I tell this to the Dr.at the hospital and he says that Seroquel is the drug that they are authorized to use to treat hallucinations and that his psychiatrist can monitor how the drug will affect him from here on out. Do any of you know anything about the effectiveness (or lack thereof) of Seroquel? Any suggestions would be appreciated. I also found out today that to get him into a nursing home or asst living facility around here, I would need to get on a waiting list and right now the wait is more than a year. (I live in very very rural Courtland, VA) I'm thinking of moving back to FL where there are a lot more nursing homes and such... You are all in my prayers. Alyssa Greek --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Alyssa - Welcome to the board. You're on the right track, since you found this board. Congrats! You sure sound like you have your hands full. I hope this board will help lead you in the direction that is best for you & your dad. To relieve some of your fears - Seroquil is the OK drug for those with LBD. You're correct with what you read of the warnings about neuroleptics - but Seroquil is the weakest of them all and most of us here will agree that's it's OK for our LO and to help with hallucinations. With that said, some of our LOs are super sensitive to drugs - my mother included - Risperidone was a big no-no for my mother, and I actually saw improvement when the small amount of Seroquil was removed. It seems all of our LOs are different in regards to what drugs they take - which makes this disease difficult to handle... I just posted my mom's story on the Files section of the board - under Members Profiles... Maybe the information can help you... Maybe the following sites can help you find placement: http://www.aplaceformom.com/default.htm http://www.carepathways.com/?home=yes ; loving daughter of Maureen of Boston, MA; finally diagnosed with LBD on 2/06 after also being diagnosed with everything from AD to Vascular Dementia caused by mini strokes to Binswengers...; was victim to rapid decline from Risperidone (or combination of Risperidone with other drugs OR possibly received another " bad drug " when she was observed/tested in a hospital in 10/05); in a NH since 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not as weepy) > > Hello everyone, > > I just joined this group a couple of days ago and I am so glad to have finally found some other people who are dealing with this craziness too...My name is Alyssa, I'm 33 years old and I have been taking care of my dad for the last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex and Amantadine, was able to continue working and lived by himself until last April. Then he started seeing aliens. I mean he really went off the deep end. He even concocted this brilliant story to go along with the hallucinations about how there was a parallel earth that was older than this one that we are on, and it took 7 days to get there but the aliens wouldn't let him go there for whatever reason...Then he insisted that they were taking my car apart in the driveway and were installing a rocket launcher in my trunk, he even picked up a floor lamp and held it like it was a gun and told me to " stand back! This thing's got a hell of a recoil! " The day before, he > actually held one of his best friends at gunpoint! (Yes, he had guns all around at this time, he had been an avid hunter, and no, there are no weapons around him now) but still, all this came out of the blue. We ended up having to commit him, and he stayed in a psych ward for 21 days. We were told that it was just an adverse reaction to the PD meds he had been on, and when he got out, he seemed better, mentally at least- he could barely walk from the myriad of drugs they had tried out on him. I took him to live with me in Florida and subsequently lost my job and had to quit school because of this. > Will somebody please write to me and tell me if this is the norm? Dad's neurologist doesn't give a flip about him, never returns my calls, he's apparently one of those Dr.s who are in it for the $$. He just recently re-diagnosed dad with LBD about a month ago, and when I asked him what that meant (ie.- how is it treated, what can we expect?) he just looked at me and shook his head and said that it would be ugly. > I feel like I'm losing my mind too, I have two children, 4 and 10, and taking dad on in the first place was hard because he was very abusive to my sister and I when we were young. He was a real cad, cheated on my mother for the last 10 years of their marriage, and my family thinks I'm nuts for taking him in, they really don't want anything much to do with him, they feel like he is reaping what he sowed, or that it's Karma or something of the like but there is nobody else to do it and he is my father.... > Right now, I'm about to go pick him up from a mental hospital because his insurance won't pay for him to stay any longer (he's been there a week today). And get this- the people there didn't even know what Lewy Body Dementia is...I had to write it down for the nurse and tell her to Google it and to make sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly says on their website, NOT to give it to elderly patients who are sufferring from dementia related psychosis, and every other DLB website that I have seen has had some sort of precautionary statement warning that DLB patients are especially at risk of severe adverse reactions to neuroleptics. I tell this to the Dr.at the hospital and he says that Seroquel is the drug that they are authorized to use to treat hallucinations and that his psychiatrist can monitor how the drug will affect him from here on out. Do any of you know anything about the effectiveness (or lack thereof) of Seroquel? Any > suggestions would be appreciated. I also found out today that to get him into a nursing home or asst living facility around here, I would need to get on a waiting list and right now the wait is more than a year. (I live in very very rural Courtland, VA) I'm thinking of moving back to FL where there are a lot more nursing homes and such... > You are all in my prayers. > Alyssa Greek > > > --------------------------------- > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 alyssa, welcome to our family although it saddens me that you had to find us. feel free to ask any question, complain, yell scream or whatever you need to do to bake live easier for him or for you. i shocked my family also by taking care of my dad, my dad was teh typical miltary person with a woman in every port. life was ery bad when lewyville was cting out. he treated me like i was his whore to pimp out. it iwas awful, but being an only child it was hard to just turn my back to him. life brings us all different sorts of things or obstacles in our paths. i respect you for what you are trying to do, i know it is horrible to care for someone you do not respect. we took care of my dad for 2 and 1/2 years before he died and looking back i have no regrets, we had to put dad in the nh after he broke his hip and then kept popping it out of the socket i was unable to care for him at home anymore, it was very difficult decision but the right one nevertheless. good luck and hugs, sharon m Date: 2006/04/10 Mon PM 06:53:42 EDT To: LBDcaregivers Subject: New to Lewyville Hello everyone, I just joined this group a couple of days ago and I am so glad to have finally found some other people who are dealing with this craziness too...My name is Alyssa, I'm 33 years old and I have been taking care of my dad for the last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex and Amantadine, was able to continue working and lived by himself until last April. Then he started seeing aliens. I mean he really went off the deep end. He even concocted this brilliant story to go along with the hallucinations about how there was a parallel earth that was older than this one that we are on, and it took 7 days to get there but the aliens wouldn't let him go there for whatever reason...Then he insisted that they were taking my car apart in the driveway and were installing a rocket launcher in my trunk, he even picked up a floor lamp and held it like it was a gun and told me to " stand back! This thing's got a hell of a recoil! " The day before, he actually held one of his best friends at gunpoint! (Yes, he had guns all around at this time, he had been an avid hunter, and no, there are no weapons around him now) but still, all this came out of the blue. We ended up having to commit him, and he stayed in a psych ward for 21 days. We were told that it was just an adverse reaction to the PD meds he had been on, and when he got out, he seemed better, mentally at least- he could barely walk from the myriad of drugs they had tried out on him. I took him to live with me in Florida and subsequently lost my job and had to quit school because of this. Will somebody please write to me and tell me if this is the norm? Dad's neurologist doesn't give a flip about him, never returns my calls, he's apparently one of those Dr.s who are in it for the $$. He just recently re-diagnosed dad with LBD about a month ago, and when I asked him what that meant (ie.- how is it treated, what can we expect?) he just looked at me and shook his head and said that it would be ugly. I feel like I'm losing my mind too, I have two children, 4 and 10, and taking dad on in the first place was hard because he was very abusive to my sister and I when we were young. He was a real cad, cheated on my mother for the last 10 years of their marriage, and my family thinks I'm nuts for taking him in, they really don't want anything much to do with him, they feel like he is reaping what he sowed, or that it's Karma or something of the like but there is nobody else to do it and he is my father.... Right now, I'm about to go pick him up from a mental hospital because his insurance won't pay for him to stay any longer (he's been there a week today). And get this- the people there didn't even know what Lewy Body Dementia is...I had to write it down for the nurse and tell her to Google it and to make sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly says on their website, NOT to give it to elderly patients who are sufferring from dementia related psychosis, and every other DLB website that I have seen has had some sort of precautionary statement warning that DLB patients are especially at risk of severe adverse reactions to neuroleptics. I tell this to the Dr.at the hospital and he says that Seroquel is the drug that they are authorized to use to treat hallucinations and that his psychiatrist can monitor how the drug will affect him from here on out. Do any of you know anything about the effectiveness (or lack thereof) of Seroquel? Any suggestions would be appreciated. I also found out today that to get him into a nursing home or asst living facility around here, I would need to get on a waiting list and right now the wait is more than a year. (I live in very very rural Courtland, VA) I'm thinking of moving back to FL where there are a lot more nursing homes and such... You are all in my prayers. Alyssa Greek --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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