Guest guest Posted June 2, 2007 Report Share Posted June 2, 2007 Welcome Bonnie! This is a great group. I've been doing IE for a little less than a month, and my relationship with food has changed a lot. Hope you stick around! Lily > > Hello everyone, > My name is Bonnie and I am new to intuitive eating. I am half way through the book and already it have changed my life. When my therapist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I started tearing up when I read your post. It was definitely an " ah-ha " moment for me. Because I am so focused on my weight and already see myself as a failure in because of it, I don't have to put myself out there as much -- it is a security blanket -- I can think to myself, " I'm not happy because I'm heavy " rather than actually look at my life, really assess it, and take action to be the person I want to be. The weight gives me a great excuse to put everything in my life off until " later, " including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I started tearing up when I read your post. It was definitely an " ah-ha " moment for me. Because I am so focused on my weight and already see myself as a failure in because of it, I don't have to put myself out there as much -- it is a security blanket -- I can think to myself, " I'm not happy because I'm heavy " rather than actually look at my life, really assess it, and take action to be the person I want to be. The weight gives me a great excuse to put everything in my life off until " later, " including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I started tearing up when I read your post. It was definitely an " ah-ha " moment for me. Because I am so focused on my weight and already see myself as a failure in because of it, I don't have to put myself out there as much -- it is a security blanket -- I can think to myself, " I'm not happy because I'm heavy " rather than actually look at my life, really assess it, and take action to be the person I want to be. The weight gives me a great excuse to put everything in my life off until " later, " including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Thank you! I think a big thing I have to get over (which you mentioned too) is comparing myself to other people. Because ultimately who I am really isn't defined by being better or worse than someone else. It's hard -- I know this is true, but I don't feel it to be true. That is one of my biggest obstacles with IE -- rationally I agree and it makes sense, but on a gut level it terrifies me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Thank you! I think a big thing I have to get over (which you mentioned too) is comparing myself to other people. Because ultimately who I am really isn't defined by being better or worse than someone else. It's hard -- I know this is true, but I don't feel it to be true. That is one of my biggest obstacles with IE -- rationally I agree and it makes sense, but on a gut level it terrifies me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Thank you! I think a big thing I have to get over (which you mentioned too) is comparing myself to other people. Because ultimately who I am really isn't defined by being better or worse than someone else. It's hard -- I know this is true, but I don't feel it to be true. That is one of my biggest obstacles with IE -- rationally I agree and it makes sense, but on a gut level it terrifies me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Eva_bee, I know how you feel and when you realize it, it can be quite a wake up call. I would encourage you to just do some thinking on it for a while, and if you are ready (only if) to take some action, find a small step you can take. It's easier to take a series of small steps than to try to change everything all at once. If I can be of any help, just let me know. Thanks! Gillian Gillian Hood-son, MS, ACSM Healthier Outcomes It's not just about losing weight! Want to eat your favorite foods without gaining weight? Get your copy of our fr*e special report, " 6 Simple Steps to Guilt Free Eating " by visiting http://www.healthieroutcomes.com At 09:09 AM 6/20/2007, you wrote: I started tearing up when I read your post. It was definitely an " ah-ha " moment for me. Because I am so focused on my weight and already see myself as a failure in because of it, I don't have to put myself out there as much -- it is a security blanket -- I can think to myself, " I'm not happy because I'm heavy " rather than actually look at my life, really assess it, and take action to be the person I want to be. The weight gives me a great excuse to put everything in my life off until " later, " including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Eva_bee, I know how you feel and when you realize it, it can be quite a wake up call. I would encourage you to just do some thinking on it for a while, and if you are ready (only if) to take some action, find a small step you can take. It's easier to take a series of small steps than to try to change everything all at once. If I can be of any help, just let me know. Thanks! Gillian Gillian Hood-son, MS, ACSM Healthier Outcomes It's not just about losing weight! Want to eat your favorite foods without gaining weight? Get your copy of our fr*e special report, " 6 Simple Steps to Guilt Free Eating " by visiting http://www.healthieroutcomes.com At 09:09 AM 6/20/2007, you wrote: I started tearing up when I read your post. It was definitely an " ah-ha " moment for me. Because I am so focused on my weight and already see myself as a failure in because of it, I don't have to put myself out there as much -- it is a security blanket -- I can think to myself, " I'm not happy because I'm heavy " rather than actually look at my life, really assess it, and take action to be the person I want to be. The weight gives me a great excuse to put everything in my life off until " later, " including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I hope that you will stay here and let these ladies love you and pray for you and help you to see yourself as a truly wonderful person. Kathyeva_bee17 wrote: I started tearing up when I read your post. It was definitely an"ah-ha" moment for me. Because I am so focused on my weight andalready see myself as a failure in because of it, I don't have to putmyself out there as much -- it is a security blanket -- I can think tomyself, "I'm not happy because I'm heavy" rather than actually look atmy life, really assess it, and take action to be the person I want tobe. The weight gives me a great excuse to put everything in my lifeoff until "later," including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I hope that you will stay here and let these ladies love you and pray for you and help you to see yourself as a truly wonderful person. Kathyeva_bee17 wrote: I started tearing up when I read your post. It was definitely an"ah-ha" moment for me. Because I am so focused on my weight andalready see myself as a failure in because of it, I don't have to putmyself out there as much -- it is a security blanket -- I can think tomyself, "I'm not happy because I'm heavy" rather than actually look atmy life, really assess it, and take action to be the person I want tobe. The weight gives me a great excuse to put everything in my lifeoff until "later," including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 I hope that you will stay here and let these ladies love you and pray for you and help you to see yourself as a truly wonderful person. Kathyeva_bee17 wrote: I started tearing up when I read your post. It was definitely an"ah-ha" moment for me. Because I am so focused on my weight andalready see myself as a failure in because of it, I don't have to putmyself out there as much -- it is a security blanket -- I can think tomyself, "I'm not happy because I'm heavy" rather than actually look atmy life, really assess it, and take action to be the person I want tobe. The weight gives me a great excuse to put everything in my lifeoff until "later," including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Not sure if that is my problem with being truly happy or not but it gives me something to think about. I keep saying that I will be happy when......and that happens and then I am still not happy...something is going on here. I think deep down I know what it is but it has to do with others changing and that can't be what makes me happy. I can't wait for others to change to be happy. If someone has not changed for 86 years I don't think they will now. Kathyeva_bee17 wrote: I started tearing up when I read your post. It was definitely an"ah-ha" moment for me. Because I am so focused on my weight andalready see myself as a failure in because of it, I don't have to putmyself out there as much -- it is a security blanket -- I can think tomyself, "I'm not happy because I'm heavy" rather than actually look atmy life, really assess it, and take action to be the person I want tobe. The weight gives me a great excuse to put everything in my lifeoff until "later," including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Not sure if that is my problem with being truly happy or not but it gives me something to think about. I keep saying that I will be happy when......and that happens and then I am still not happy...something is going on here. I think deep down I know what it is but it has to do with others changing and that can't be what makes me happy. I can't wait for others to change to be happy. If someone has not changed for 86 years I don't think they will now. Kathyeva_bee17 wrote: I started tearing up when I read your post. It was definitely an"ah-ha" moment for me. Because I am so focused on my weight andalready see myself as a failure in because of it, I don't have to putmyself out there as much -- it is a security blanket -- I can think tomyself, "I'm not happy because I'm heavy" rather than actually look atmy life, really assess it, and take action to be the person I want tobe. The weight gives me a great excuse to put everything in my lifeoff until "later," including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Not sure if that is my problem with being truly happy or not but it gives me something to think about. I keep saying that I will be happy when......and that happens and then I am still not happy...something is going on here. I think deep down I know what it is but it has to do with others changing and that can't be what makes me happy. I can't wait for others to change to be happy. If someone has not changed for 86 years I don't think they will now. Kathyeva_bee17 wrote: I started tearing up when I read your post. It was definitely an"ah-ha" moment for me. Because I am so focused on my weight andalready see myself as a failure in because of it, I don't have to putmyself out there as much -- it is a security blanket -- I can think tomyself, "I'm not happy because I'm heavy" rather than actually look atmy life, really assess it, and take action to be the person I want tobe. The weight gives me a great excuse to put everything in my lifeoff until "later," including being truely happy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Welcome , I can feel the emotions in your words and I understand many of your feelings. It just seems so unfair that we must go through this terrible ordeal. The diagnosis of Lewy Body is positive on one hand in that you have a name to put on all these seemingly unrelated problems, but the horrible part is that there is no cure. But having the diagnosis is the key to making the best choices in treating this disease. Hopefully you will get that appointment soon at the Booth Gardner Center with the neurologist who will be able to better treat your husband's symptoms of paranoia and hallucinations. It made a huge difference in my mom's life, although it wasn't til her diagnosis that the right medication was prescribed. Can your husband be left alone during the day? Everyone is different in their acceptance of having caregivers or help coming into their home. But that would give you some peace of mind while at work. But just as important is for you to take care of yourself. One of the wisest things a social worker told me was that I am not responsible for my mother's behavior and symptoms, anymore than I was responsible when she was an independent self-sufficient woman before her disease. It took me a while to fully grasp those words, but they are so true. Mom had just been admitted to an elder behavioral unit and I kept thinking I should have done something to avoid this, if only I had tried harder I could have prevented this. But trying to deal with two dozen different symptoms can make you go crazy yourself - visiting so many specialists and trying so many different things. You can only do so much. Take one day at a time and know that you are in the right place. And the hardest thing I think is having the person you're doing everything for treat you so unkindly. There's a saying I hear in Lewy Groups all the time. " It's the Lewy talking, not your loved one. " Your husband doesn't know what he's saying (although he'll fight on you on that too), it's the " Lewy " . There are so many knowledgeable people on this website. Any problem you have someone else has dealt with. You are definitely in the right place. Hang in there. Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Plouff Sent: Thursday, March 01, 2012 8:51 AM To: LBDcaregivers Subject: Re: Welcome New Members Let me introduce myself to the group. My name is and I live in the Seattle area of the Pacific Northwest. I am 57 and my husband is 63. I suppose my story is like many of yours. It started about 5 years ago with the strange accusations of cheating and accusing friends of theft. To me he was almost obsessed with the ideas. I felt as though my marriage was crumbling and came to believe that if I was being accused of infidelity, he must be cheating on me. Then about 3 years ago he started to fall frequently and his employer was giving him trouble about his handwriting. Although his orthopedist told him he thought it was Parkinson's, he went to another orthopedist who performed shoulder surgery hoping to release some trapped nerves. Post surgery we noted nothing had changed with his writing even though other things (stiff neck) did seem better. His depression deepened. Since he worked for a correctional facility, the ability to walk, run and write are essential parts of the job. They finally sent him for a psych eval, and due to potential side effects from his PD meds, he was medically retired last year. That devastated him and applying for social security made him feel older than he was. He was getting difficult to understand and his decline was rapid and sad to watch. I blamed his employer. We made many trips back to his neurologist because the medications had appeared to stop working. She repeatedly told us that was all there was and sent us home. In January of this year, I found another neurologist. I did not get to attend the appointment with him since he had forgotten what day it was on and after taking an afternoon off for no appointment, I could not also get the next day off. Just as well, I was so frustrated at his inability to find a hospital he had been too many times and driving in circles was making me nuts. After visiting with the new neurologist he brought home some paperwork and told me he could not understand why he needed a second opinion. He thought she was the second opinion. She adjusted his medications and he seemed happy with that, but not any better. His accusations of me taking his things and throwing them away was tearing us up. He had " proof " he said, that I was trying to destroy any proof that he ever existed. I was accused of taking photos of him as a child and newspaper clippings of family members obits. He verbally attacked me one day wanting to know why I was lip-locked with this woman downtown. He SAW me and what did I see in her. I sat down and noticed the paper he had gotten and it was sitting with some bills. I looked at it for the first time roughly 2 weeks after he brought it home. It was there I saw the words " Lewy Body " and referral to a specialist. I googled it, read about it. reading many of the blogs this site references. I was broken and sobbed. What he was going through with the forgetting things and accusations/delusions/paranoia all seemed to fit in with what I read about the disease. Unfortunately, the Booth Gardner Center has not been able to get him in for an appointment yet. It is getting unbearable at home. He is hording and not letting the dogs our and then not cleaning it up. And then he blames me. He wants to help, but frequently will ruin a pleasant evening going back to accusations driven by paranoia. He has stared have visual hallucinations as well, seeing corn in his 7-bean soup that had nothing even yellow it in. The most difficult part for me has been that he doesn't want to believe that he is wrong in his beliefs. I have no one who understands to talk to. I hope this group helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Welcome , I can feel the emotions in your words and I understand many of your feelings. It just seems so unfair that we must go through this terrible ordeal. The diagnosis of Lewy Body is positive on one hand in that you have a name to put on all these seemingly unrelated problems, but the horrible part is that there is no cure. But having the diagnosis is the key to making the best choices in treating this disease. Hopefully you will get that appointment soon at the Booth Gardner Center with the neurologist who will be able to better treat your husband's symptoms of paranoia and hallucinations. It made a huge difference in my mom's life, although it wasn't til her diagnosis that the right medication was prescribed. Can your husband be left alone during the day? Everyone is different in their acceptance of having caregivers or help coming into their home. But that would give you some peace of mind while at work. But just as important is for you to take care of yourself. One of the wisest things a social worker told me was that I am not responsible for my mother's behavior and symptoms, anymore than I was responsible when she was an independent self-sufficient woman before her disease. It took me a while to fully grasp those words, but they are so true. Mom had just been admitted to an elder behavioral unit and I kept thinking I should have done something to avoid this, if only I had tried harder I could have prevented this. But trying to deal with two dozen different symptoms can make you go crazy yourself - visiting so many specialists and trying so many different things. You can only do so much. Take one day at a time and know that you are in the right place. And the hardest thing I think is having the person you're doing everything for treat you so unkindly. There's a saying I hear in Lewy Groups all the time. " It's the Lewy talking, not your loved one. " Your husband doesn't know what he's saying (although he'll fight on you on that too), it's the " Lewy " . There are so many knowledgeable people on this website. Any problem you have someone else has dealt with. You are definitely in the right place. Hang in there. Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Plouff Sent: Thursday, March 01, 2012 8:51 AM To: LBDcaregivers Subject: Re: Welcome New Members Let me introduce myself to the group. My name is and I live in the Seattle area of the Pacific Northwest. I am 57 and my husband is 63. I suppose my story is like many of yours. It started about 5 years ago with the strange accusations of cheating and accusing friends of theft. To me he was almost obsessed with the ideas. I felt as though my marriage was crumbling and came to believe that if I was being accused of infidelity, he must be cheating on me. Then about 3 years ago he started to fall frequently and his employer was giving him trouble about his handwriting. Although his orthopedist told him he thought it was Parkinson's, he went to another orthopedist who performed shoulder surgery hoping to release some trapped nerves. Post surgery we noted nothing had changed with his writing even though other things (stiff neck) did seem better. His depression deepened. Since he worked for a correctional facility, the ability to walk, run and write are essential parts of the job. They finally sent him for a psych eval, and due to potential side effects from his PD meds, he was medically retired last year. That devastated him and applying for social security made him feel older than he was. He was getting difficult to understand and his decline was rapid and sad to watch. I blamed his employer. We made many trips back to his neurologist because the medications had appeared to stop working. She repeatedly told us that was all there was and sent us home. In January of this year, I found another neurologist. I did not get to attend the appointment with him since he had forgotten what day it was on and after taking an afternoon off for no appointment, I could not also get the next day off. Just as well, I was so frustrated at his inability to find a hospital he had been too many times and driving in circles was making me nuts. After visiting with the new neurologist he brought home some paperwork and told me he could not understand why he needed a second opinion. He thought she was the second opinion. She adjusted his medications and he seemed happy with that, but not any better. His accusations of me taking his things and throwing them away was tearing us up. He had " proof " he said, that I was trying to destroy any proof that he ever existed. I was accused of taking photos of him as a child and newspaper clippings of family members obits. He verbally attacked me one day wanting to know why I was lip-locked with this woman downtown. He SAW me and what did I see in her. I sat down and noticed the paper he had gotten and it was sitting with some bills. I looked at it for the first time roughly 2 weeks after he brought it home. It was there I saw the words " Lewy Body " and referral to a specialist. I googled it, read about it. reading many of the blogs this site references. I was broken and sobbed. What he was going through with the forgetting things and accusations/delusions/paranoia all seemed to fit in with what I read about the disease. Unfortunately, the Booth Gardner Center has not been able to get him in for an appointment yet. It is getting unbearable at home. He is hording and not letting the dogs our and then not cleaning it up. And then he blames me. He wants to help, but frequently will ruin a pleasant evening going back to accusations driven by paranoia. He has stared have visual hallucinations as well, seeing corn in his 7-bean soup that had nothing even yellow it in. The most difficult part for me has been that he doesn't want to believe that he is wrong in his beliefs. I have no one who understands to talk to. I hope this group helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Welcome , I can feel the emotions in your words and I understand many of your feelings. It just seems so unfair that we must go through this terrible ordeal. The diagnosis of Lewy Body is positive on one hand in that you have a name to put on all these seemingly unrelated problems, but the horrible part is that there is no cure. But having the diagnosis is the key to making the best choices in treating this disease. Hopefully you will get that appointment soon at the Booth Gardner Center with the neurologist who will be able to better treat your husband's symptoms of paranoia and hallucinations. It made a huge difference in my mom's life, although it wasn't til her diagnosis that the right medication was prescribed. Can your husband be left alone during the day? Everyone is different in their acceptance of having caregivers or help coming into their home. But that would give you some peace of mind while at work. But just as important is for you to take care of yourself. One of the wisest things a social worker told me was that I am not responsible for my mother's behavior and symptoms, anymore than I was responsible when she was an independent self-sufficient woman before her disease. It took me a while to fully grasp those words, but they are so true. Mom had just been admitted to an elder behavioral unit and I kept thinking I should have done something to avoid this, if only I had tried harder I could have prevented this. But trying to deal with two dozen different symptoms can make you go crazy yourself - visiting so many specialists and trying so many different things. You can only do so much. Take one day at a time and know that you are in the right place. And the hardest thing I think is having the person you're doing everything for treat you so unkindly. There's a saying I hear in Lewy Groups all the time. " It's the Lewy talking, not your loved one. " Your husband doesn't know what he's saying (although he'll fight on you on that too), it's the " Lewy " . There are so many knowledgeable people on this website. Any problem you have someone else has dealt with. You are definitely in the right place. Hang in there. Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Plouff Sent: Thursday, March 01, 2012 8:51 AM To: LBDcaregivers Subject: Re: Welcome New Members Let me introduce myself to the group. My name is and I live in the Seattle area of the Pacific Northwest. I am 57 and my husband is 63. I suppose my story is like many of yours. It started about 5 years ago with the strange accusations of cheating and accusing friends of theft. To me he was almost obsessed with the ideas. I felt as though my marriage was crumbling and came to believe that if I was being accused of infidelity, he must be cheating on me. Then about 3 years ago he started to fall frequently and his employer was giving him trouble about his handwriting. Although his orthopedist told him he thought it was Parkinson's, he went to another orthopedist who performed shoulder surgery hoping to release some trapped nerves. Post surgery we noted nothing had changed with his writing even though other things (stiff neck) did seem better. His depression deepened. Since he worked for a correctional facility, the ability to walk, run and write are essential parts of the job. They finally sent him for a psych eval, and due to potential side effects from his PD meds, he was medically retired last year. That devastated him and applying for social security made him feel older than he was. He was getting difficult to understand and his decline was rapid and sad to watch. I blamed his employer. We made many trips back to his neurologist because the medications had appeared to stop working. She repeatedly told us that was all there was and sent us home. In January of this year, I found another neurologist. I did not get to attend the appointment with him since he had forgotten what day it was on and after taking an afternoon off for no appointment, I could not also get the next day off. Just as well, I was so frustrated at his inability to find a hospital he had been too many times and driving in circles was making me nuts. After visiting with the new neurologist he brought home some paperwork and told me he could not understand why he needed a second opinion. He thought she was the second opinion. She adjusted his medications and he seemed happy with that, but not any better. His accusations of me taking his things and throwing them away was tearing us up. He had " proof " he said, that I was trying to destroy any proof that he ever existed. I was accused of taking photos of him as a child and newspaper clippings of family members obits. He verbally attacked me one day wanting to know why I was lip-locked with this woman downtown. He SAW me and what did I see in her. I sat down and noticed the paper he had gotten and it was sitting with some bills. I looked at it for the first time roughly 2 weeks after he brought it home. It was there I saw the words " Lewy Body " and referral to a specialist. I googled it, read about it. reading many of the blogs this site references. I was broken and sobbed. What he was going through with the forgetting things and accusations/delusions/paranoia all seemed to fit in with what I read about the disease. Unfortunately, the Booth Gardner Center has not been able to get him in for an appointment yet. It is getting unbearable at home. He is hording and not letting the dogs our and then not cleaning it up. And then he blames me. He wants to help, but frequently will ruin a pleasant evening going back to accusations driven by paranoia. He has stared have visual hallucinations as well, seeing corn in his 7-bean soup that had nothing even yellow it in. The most difficult part for me has been that he doesn't want to believe that he is wrong in his beliefs. I have no one who understands to talk to. I hope this group helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 hello all, I'm . My dad was diagnosed with LBD after becoming increasingly paranoid & hallucinating. He was on every drug LBD patients aren't supposed to take until we found a wonderful neurologist at UNC that diagnosed his LBD. He has recently (earlier this week) slipped back into the extreme paranoia/hallucinations and we're not sure if it's him not taking his pills (my mother doesn't always watch him) or if the meds just aren't holding him. He was just started on heavy doses of seraquil (10 pills a day!) to combat the paranoia & hallucinations but it's not helping yet. I think one of my parent's main issues is their age gap, my mom is 7 years younger & still working full time while my dad has been retired for 5 years. My dad has gotten to the point where he needs constant supervision & cannot ride in a car without outbursts & grabbing the steering wheel so he's home alone for 8-12 hours at a time on a farm. His cognitive abilities are still very much there but he is hallucinating 90% of the time, he can pull it together enough to have a 2 minute conversation with someone on the phone & sound normal, but that's about it. I'm the closest child, I live 2 hours away but I'm also the youngest (I'm 29) and I'm having a hard time convincing my mother to work from home & help take care of my dad, he's calmer when she stays with him. She would rather him go into a geriatric psych ward. It's extremely frustrating for my sister & I that my mom is not willing to help my father in any way, claiming she's not a caregiver. I also have two step siblings who are 20 years older than me who live 10-12 hours away & it's hard to handle half siblings & my mother together. His 2 sisters live 2 hours away but they don't really understand what's going on even though they've seen him at his worst. My parents have a horse farm & my mom's best friend lives above their garage & helps take care of the farm and most of his paranoia & hallucinations are directed towards her (she's opening back accounts in their name, sneaking into the house at night trying to stab my dad with needles, stealing their new truck, etc) and every time she comes & goes (she refuses to come into the main house anymore) it sets him off. We do our best to not talk about anything that will trigger his paranoia but sometimes it's out of our control (a week ago neighborhood kids took my parent's canoe into their pond on their day off school, which set him off) I am hoping that the new higher levels of seraquil & the possibility of adding clonipan will help level him out again, he did have about 8 months of being almost back to normal after his initial diagnosis. There is no LBD support group in Charlotte (where I live) but there is one in Greensboro, where my parents live. Any advice on spousal caregiving for my mom? My boyfriend & I sat her down & went over the suggestions on interacting on the LBD website & she said she's trying to remain calm & not yell at him or get to aggravated with him after talking to us. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 Hi, . In your mom's defense, I can attest that it is very hard to work full time and be a primary caregiver, whether you are with your loved one 24/7 or not. Working may be your mom's only socially acceptable reason for having time away from your dad's dementia. And caregivers desperately need some time away from Lewy. Until your dad's outbursts and hallucinations are brought under control, it is not safe for your mom to be alone with him as much as it sounds like she is, even with a friend living on the property. Hospitalization, at least until your dad can be medicated properly, might be the only sensible option. Living on a farm, distant from neighbors and other resources, intensifies the risks of his being at home. Living on a farm also offers a lot of dangers for your father and those around him that are not necessarily found in a city or suburb. Are you sure you know everything that is happening when you aren't there? Is your mom holding back information to protect you or your view of your dad? It sounds like this is a working farm. Are there farm hands around during the day? Is there anyone other than the friend living there? Who manages the farm? If it is the friend, he/she already has a lot to do. How close is the farm to a city or even a town with resources that would help? If your mom or the friend had to call for police/sheriff assistance, how quickly would it get there? It's been more than 40 years since, but my grandparents lived on a farm when my grandfather had his first violent outburst and hit my grandmother. He was immediately committed to a psychiatric hospital for evaluation and care. His diagnosis (in the 1960s) was Alzheimer's. Mom's neuropsych says it was probably LBD, based on the information we gave him - especially Grandpa's reaction to medications. Not only could he no longer farm, but he could no longer protect the property or Grandma as such a rural setting called for. Grandma, being very pragmatic, sold the farm and moved into town where there were close neighbors who watched out for each other. It was a very smart move. Even when Grandma couldn't be in the house with him, someone was always watching Grandpa and the house - the way people in small towns watch out for their own. Where I'm going with this is that it may be time for a change for your parents. If not selling the farm, maybe renting it out. But understand that, especially until your dad has better control, he is a liability on a farm to anyone renting it or working it. A new living situation, whether it is him living in a facility that can properly care for him, or both of them living in a safer environment, may be the only option. Before judging your mom too harshly, spend a week living with them. Get to know what happens during both the day and night. Learn what it is like for your mom, as the default primary caregiver. Then understand that your relationship with your dad is different from your mom's relationship with him and even if you do experience the worst during that time, you and your mom may still have different perceptions of the situation. And, unless you are in a position to put your own life on hold (most people aren't, so don't think you have to), your mom has to find what works for her and how she can best care for your dad in this situation. It may not be by being with him 24/7. As it is a rural setting, I am guessing that resources like day programs aren't tremendously available. But if there is such a thing, your parents might want to consider it. Such a program is likely to require that the outbursts and hallucinations need to be under control before he can attend. I wish I could give you more encouragement. Try to think of hospitalization as an opportunity to get things under control and make your dad's life better than it is right now. Hospitalization isn't always permanent. It may not even be long-term. From what you have said, it is pretty clear that some action needs to be taken for both your dad's and your mom's safety and quality of life. While it hurts to actually take these kinds of action, the results often make them very worthwhile. What would your parents have advised if you were in your mom's situation? Best wishes. Kate > ** > > > hello all, I'm . My dad was diagnosed with LBD after becoming > increasingly paranoid & hallucinating. > > He was on every drug LBD patients aren't supposed to take until we found a > wonderful neurologist at UNC that diagnosed his LBD. He has recently > (earlier this week) slipped back into the extreme paranoia/hallucinations > and we're not sure if it's him not taking his pills (my mother doesn't > always watch him) or if the meds just aren't holding him. He was just > started on heavy doses of seraquil (10 pills a day!) to combat the paranoia > & hallucinations but it's not helping yet. > > I think one of my parent's main issues is their age gap, my mom is 7 years > younger & still working full time while my dad has been retired for 5 > years. My dad has gotten to the point where he needs constant supervision & > cannot ride in a car without outbursts & grabbing the steering wheel so > he's home alone for 8-12 hours at a time on a farm. His cognitive abilities > are still very much there but he is hallucinating 90% of the time, he can > pull it together enough to have a 2 minute conversation with someone on the > phone & sound normal, but that's about it. > > I'm the closest child, I live 2 hours away but I'm also the youngest (I'm > 29) and I'm having a hard time convincing my mother to work from home & > help take care of my dad, he's calmer when she stays with him. She would > rather him go into a geriatric psych ward. It's extremely frustrating for > my sister & I that my mom is not willing to help my father in any way, > claiming she's not a caregiver. I also have two step siblings who are 20 > years older than me who live 10-12 hours away & it's hard to handle half > siblings & my mother together. His 2 sisters live 2 hours away but they > don't really understand what's going on even though they've seen him at his > worst. > > My parents have a horse farm & my mom's best friend lives above their > garage & helps take care of the farm and most of his paranoia & > hallucinations are directed towards her (she's opening back accounts in > their name, sneaking into the house at night trying to stab my dad with > needles, stealing their new truck, etc) and every time she comes & goes > (she refuses to come into the main house anymore) it sets him off. We do > our best to not talk about anything that will trigger his paranoia but > sometimes it's out of our control (a week ago neighborhood kids took my > parent's canoe into their pond on their day off school, which set him off) > > I am hoping that the new higher levels of seraquil & the possibility of > adding clonipan will help level him out again, he did have about 8 months > of being almost back to normal after his initial diagnosis. There is no LBD > support group in Charlotte (where I live) but there is one in Greensboro, > where my parents live. > > Any advice on spousal caregiving for my mom? My boyfriend & I sat her down > & went over the suggestions on interacting on the LBD website & she said > she's trying to remain calm & not yell at him or get to aggravated with him > after talking to us. > > Thanks! > > > > > -- Kate Knapp, OIT University of Minnesota You were born with certain gifts and talents. In kindergarten you were taught to share. The world needs all of the gifts it can get. Don’t be shy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 Hi, . In your mom's defense, I can attest that it is very hard to work full time and be a primary caregiver, whether you are with your loved one 24/7 or not. Working may be your mom's only socially acceptable reason for having time away from your dad's dementia. And caregivers desperately need some time away from Lewy. Until your dad's outbursts and hallucinations are brought under control, it is not safe for your mom to be alone with him as much as it sounds like she is, even with a friend living on the property. Hospitalization, at least until your dad can be medicated properly, might be the only sensible option. Living on a farm, distant from neighbors and other resources, intensifies the risks of his being at home. Living on a farm also offers a lot of dangers for your father and those around him that are not necessarily found in a city or suburb. Are you sure you know everything that is happening when you aren't there? Is your mom holding back information to protect you or your view of your dad? It sounds like this is a working farm. Are there farm hands around during the day? Is there anyone other than the friend living there? Who manages the farm? If it is the friend, he/she already has a lot to do. How close is the farm to a city or even a town with resources that would help? If your mom or the friend had to call for police/sheriff assistance, how quickly would it get there? It's been more than 40 years since, but my grandparents lived on a farm when my grandfather had his first violent outburst and hit my grandmother. He was immediately committed to a psychiatric hospital for evaluation and care. His diagnosis (in the 1960s) was Alzheimer's. Mom's neuropsych says it was probably LBD, based on the information we gave him - especially Grandpa's reaction to medications. Not only could he no longer farm, but he could no longer protect the property or Grandma as such a rural setting called for. Grandma, being very pragmatic, sold the farm and moved into town where there were close neighbors who watched out for each other. It was a very smart move. Even when Grandma couldn't be in the house with him, someone was always watching Grandpa and the house - the way people in small towns watch out for their own. Where I'm going with this is that it may be time for a change for your parents. If not selling the farm, maybe renting it out. But understand that, especially until your dad has better control, he is a liability on a farm to anyone renting it or working it. A new living situation, whether it is him living in a facility that can properly care for him, or both of them living in a safer environment, may be the only option. Before judging your mom too harshly, spend a week living with them. Get to know what happens during both the day and night. Learn what it is like for your mom, as the default primary caregiver. Then understand that your relationship with your dad is different from your mom's relationship with him and even if you do experience the worst during that time, you and your mom may still have different perceptions of the situation. And, unless you are in a position to put your own life on hold (most people aren't, so don't think you have to), your mom has to find what works for her and how she can best care for your dad in this situation. It may not be by being with him 24/7. As it is a rural setting, I am guessing that resources like day programs aren't tremendously available. But if there is such a thing, your parents might want to consider it. Such a program is likely to require that the outbursts and hallucinations need to be under control before he can attend. I wish I could give you more encouragement. Try to think of hospitalization as an opportunity to get things under control and make your dad's life better than it is right now. Hospitalization isn't always permanent. It may not even be long-term. From what you have said, it is pretty clear that some action needs to be taken for both your dad's and your mom's safety and quality of life. While it hurts to actually take these kinds of action, the results often make them very worthwhile. What would your parents have advised if you were in your mom's situation? Best wishes. Kate > ** > > > hello all, I'm . My dad was diagnosed with LBD after becoming > increasingly paranoid & hallucinating. > > He was on every drug LBD patients aren't supposed to take until we found a > wonderful neurologist at UNC that diagnosed his LBD. He has recently > (earlier this week) slipped back into the extreme paranoia/hallucinations > and we're not sure if it's him not taking his pills (my mother doesn't > always watch him) or if the meds just aren't holding him. He was just > started on heavy doses of seraquil (10 pills a day!) to combat the paranoia > & hallucinations but it's not helping yet. > > I think one of my parent's main issues is their age gap, my mom is 7 years > younger & still working full time while my dad has been retired for 5 > years. My dad has gotten to the point where he needs constant supervision & > cannot ride in a car without outbursts & grabbing the steering wheel so > he's home alone for 8-12 hours at a time on a farm. His cognitive abilities > are still very much there but he is hallucinating 90% of the time, he can > pull it together enough to have a 2 minute conversation with someone on the > phone & sound normal, but that's about it. > > I'm the closest child, I live 2 hours away but I'm also the youngest (I'm > 29) and I'm having a hard time convincing my mother to work from home & > help take care of my dad, he's calmer when she stays with him. She would > rather him go into a geriatric psych ward. It's extremely frustrating for > my sister & I that my mom is not willing to help my father in any way, > claiming she's not a caregiver. I also have two step siblings who are 20 > years older than me who live 10-12 hours away & it's hard to handle half > siblings & my mother together. His 2 sisters live 2 hours away but they > don't really understand what's going on even though they've seen him at his > worst. > > My parents have a horse farm & my mom's best friend lives above their > garage & helps take care of the farm and most of his paranoia & > hallucinations are directed towards her (she's opening back accounts in > their name, sneaking into the house at night trying to stab my dad with > needles, stealing their new truck, etc) and every time she comes & goes > (she refuses to come into the main house anymore) it sets him off. We do > our best to not talk about anything that will trigger his paranoia but > sometimes it's out of our control (a week ago neighborhood kids took my > parent's canoe into their pond on their day off school, which set him off) > > I am hoping that the new higher levels of seraquil & the possibility of > adding clonipan will help level him out again, he did have about 8 months > of being almost back to normal after his initial diagnosis. There is no LBD > support group in Charlotte (where I live) but there is one in Greensboro, > where my parents live. > > Any advice on spousal caregiving for my mom? My boyfriend & I sat her down > & went over the suggestions on interacting on the LBD website & she said > she's trying to remain calm & not yell at him or get to aggravated with him > after talking to us. > > Thanks! > > > > > -- Kate Knapp, OIT University of Minnesota You were born with certain gifts and talents. In kindergarten you were taught to share. The world needs all of the gifts it can get. Don’t be shy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 Apparently overnight he seems to have gotten even worse, he was in the middle of feeding the horses & someone slowed down at the turn near there house & he ran out into the street yelling at them & left the gate open & a horse got out. luckily the farrier was there & caught the horse. She talked to the Dr again today & he upped him to 12 pills a day & added thorazadone. if he was refusing to take 4 pills 2x a day i'm not sure how he's going to take 13 pills a day but the Dr said he'd call my dad & explain that he prescribed the pills & my mom isn't trying to poison him. We're supposed to wait until Sunday & see how he is. My boyfriend & I are headed up there for the weekend to help take care of him. From what I gather they aren't sure there will be a bed for him at the geriatric psych ward which is why they're trying to hold off. Their farm is a hobby farm, so not huge but they do have tractors, tools & 2 horses that make me concerned for his safety alone for 8-12 hours a day & he lives at a bend in a road in a busy neighborhood so people are always driving by & they have to slow at the bend in the road. It's a shame that my mom's best friend who is living on the farm that all his paranoia is directed towards is a nurse who worked in a dementia/alzheimers wing of a nursing home for 10 years & is the best person to help care for him & he won't let her near him. He even chased her off the lawnmower yesterday. As for my mom's caregiving, she's the first to admit she isn't one, when I was born I was barely 2 lbs & she couldn't handle caring for me so her best friend (the one that still lives with them) raised me as her own. She doesn't do well with emotions or not being in control. My boyfriend & I come on the weekends when we can & when dad had his last bad string of episodes last year I spent 2 months on the farm caring for him & I'll be there for most of March doing the same thing. I'm lucky that I work for myself (I'm a photographer) so I have the luxury of working from a different city for a month at a time if I need to. I own a house in Greensboro that's now a rental & I would LOVE for them to move into it, he could walk to the grocery store (it's 1000 feet away) & there wouldn't be farm upkeep for them to handle. Unfortunately they built an expensive hobby farm worth 1+ million dollars at the height of the market & my mom refuses to sell it or rent it. There is also the issue that whatever money they make from the sale a nursing or skilled care facility can take. My mom is one of those " keeping up appearances " people. she drives a brand new lexus hybrid & can't afford it & built a million dollar home she can't afford so she's now having to work 12 hours a day/7 days a week to keep up with her lifestyle & doesn't have any money left over to care for dad. We tried before they built the farm to move into my house but it wasn't big enough for my mom & the neighborhood wasn't nice enough. sorry, i know I sound harsh on my mom but my sister & i feel like we're dealing with a LBD patient & a child instead of our parents. They've been living outside their means for so long that now when they need the extra money they're spending on a 4400 sf house & 3 expensive cars they don't have money to spare. > > > ** > > > > > > hello all, I'm . My dad was diagnosed with LBD after becoming > > increasingly paranoid & hallucinating. > > > > He was on every drug LBD patients aren't supposed to take until we found a > > wonderful neurologist at UNC that diagnosed his LBD. He has recently > > (earlier this week) slipped back into the extreme paranoia/hallucinations > > and we're not sure if it's him not taking his pills (my mother doesn't > > always watch him) or if the meds just aren't holding him. He was just > > started on heavy doses of seraquil (10 pills a day!) to combat the paranoia > > & hallucinations but it's not helping yet. > > > > I think one of my parent's main issues is their age gap, my mom is 7 years > > younger & still working full time while my dad has been retired for 5 > > years. My dad has gotten to the point where he needs constant supervision & > > cannot ride in a car without outbursts & grabbing the steering wheel so > > he's home alone for 8-12 hours at a time on a farm. His cognitive abilities > > are still very much there but he is hallucinating 90% of the time, he can > > pull it together enough to have a 2 minute conversation with someone on the > > phone & sound normal, but that's about it. > > > > I'm the closest child, I live 2 hours away but I'm also the youngest (I'm > > 29) and I'm having a hard time convincing my mother to work from home & > > help take care of my dad, he's calmer when she stays with him. She would > > rather him go into a geriatric psych ward. It's extremely frustrating for > > my sister & I that my mom is not willing to help my father in any way, > > claiming she's not a caregiver. I also have two step siblings who are 20 > > years older than me who live 10-12 hours away & it's hard to handle half > > siblings & my mother together. His 2 sisters live 2 hours away but they > > don't really understand what's going on even though they've seen him at his > > worst. > > > > My parents have a horse farm & my mom's best friend lives above their > > garage & helps take care of the farm and most of his paranoia & > > hallucinations are directed towards her (she's opening back accounts in > > their name, sneaking into the house at night trying to stab my dad with > > needles, stealing their new truck, etc) and every time she comes & goes > > (she refuses to come into the main house anymore) it sets him off. We do > > our best to not talk about anything that will trigger his paranoia but > > sometimes it's out of our control (a week ago neighborhood kids took my > > parent's canoe into their pond on their day off school, which set him off) > > > > I am hoping that the new higher levels of seraquil & the possibility of > > adding clonipan will help level him out again, he did have about 8 months > > of being almost back to normal after his initial diagnosis. There is no LBD > > support group in Charlotte (where I live) but there is one in Greensboro, > > where my parents live. > > > > Any advice on spousal caregiving for my mom? My boyfriend & I sat her down > > & went over the suggestions on interacting on the LBD website & she said > > she's trying to remain calm & not yell at him or get to aggravated with him > > after talking to us. > > > > Thanks! > > > > > > > > > > > > > > -- > Kate Knapp, OIT > University of Minnesota > > > You were born with certain gifts and talents. > In kindergarten you were taught to share. > The world needs all of the gifts it can get. > Don�t be shy. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 Apparently overnight he seems to have gotten even worse, he was in the middle of feeding the horses & someone slowed down at the turn near there house & he ran out into the street yelling at them & left the gate open & a horse got out. luckily the farrier was there & caught the horse. She talked to the Dr again today & he upped him to 12 pills a day & added thorazadone. if he was refusing to take 4 pills 2x a day i'm not sure how he's going to take 13 pills a day but the Dr said he'd call my dad & explain that he prescribed the pills & my mom isn't trying to poison him. We're supposed to wait until Sunday & see how he is. My boyfriend & I are headed up there for the weekend to help take care of him. From what I gather they aren't sure there will be a bed for him at the geriatric psych ward which is why they're trying to hold off. Their farm is a hobby farm, so not huge but they do have tractors, tools & 2 horses that make me concerned for his safety alone for 8-12 hours a day & he lives at a bend in a road in a busy neighborhood so people are always driving by & they have to slow at the bend in the road. It's a shame that my mom's best friend who is living on the farm that all his paranoia is directed towards is a nurse who worked in a dementia/alzheimers wing of a nursing home for 10 years & is the best person to help care for him & he won't let her near him. He even chased her off the lawnmower yesterday. As for my mom's caregiving, she's the first to admit she isn't one, when I was born I was barely 2 lbs & she couldn't handle caring for me so her best friend (the one that still lives with them) raised me as her own. She doesn't do well with emotions or not being in control. My boyfriend & I come on the weekends when we can & when dad had his last bad string of episodes last year I spent 2 months on the farm caring for him & I'll be there for most of March doing the same thing. I'm lucky that I work for myself (I'm a photographer) so I have the luxury of working from a different city for a month at a time if I need to. I own a house in Greensboro that's now a rental & I would LOVE for them to move into it, he could walk to the grocery store (it's 1000 feet away) & there wouldn't be farm upkeep for them to handle. Unfortunately they built an expensive hobby farm worth 1+ million dollars at the height of the market & my mom refuses to sell it or rent it. There is also the issue that whatever money they make from the sale a nursing or skilled care facility can take. My mom is one of those " keeping up appearances " people. she drives a brand new lexus hybrid & can't afford it & built a million dollar home she can't afford so she's now having to work 12 hours a day/7 days a week to keep up with her lifestyle & doesn't have any money left over to care for dad. We tried before they built the farm to move into my house but it wasn't big enough for my mom & the neighborhood wasn't nice enough. sorry, i know I sound harsh on my mom but my sister & i feel like we're dealing with a LBD patient & a child instead of our parents. They've been living outside their means for so long that now when they need the extra money they're spending on a 4400 sf house & 3 expensive cars they don't have money to spare. > > > ** > > > > > > hello all, I'm . My dad was diagnosed with LBD after becoming > > increasingly paranoid & hallucinating. > > > > He was on every drug LBD patients aren't supposed to take until we found a > > wonderful neurologist at UNC that diagnosed his LBD. He has recently > > (earlier this week) slipped back into the extreme paranoia/hallucinations > > and we're not sure if it's him not taking his pills (my mother doesn't > > always watch him) or if the meds just aren't holding him. He was just > > started on heavy doses of seraquil (10 pills a day!) to combat the paranoia > > & hallucinations but it's not helping yet. > > > > I think one of my parent's main issues is their age gap, my mom is 7 years > > younger & still working full time while my dad has been retired for 5 > > years. My dad has gotten to the point where he needs constant supervision & > > cannot ride in a car without outbursts & grabbing the steering wheel so > > he's home alone for 8-12 hours at a time on a farm. His cognitive abilities > > are still very much there but he is hallucinating 90% of the time, he can > > pull it together enough to have a 2 minute conversation with someone on the > > phone & sound normal, but that's about it. > > > > I'm the closest child, I live 2 hours away but I'm also the youngest (I'm > > 29) and I'm having a hard time convincing my mother to work from home & > > help take care of my dad, he's calmer when she stays with him. She would > > rather him go into a geriatric psych ward. It's extremely frustrating for > > my sister & I that my mom is not willing to help my father in any way, > > claiming she's not a caregiver. I also have two step siblings who are 20 > > years older than me who live 10-12 hours away & it's hard to handle half > > siblings & my mother together. His 2 sisters live 2 hours away but they > > don't really understand what's going on even though they've seen him at his > > worst. > > > > My parents have a horse farm & my mom's best friend lives above their > > garage & helps take care of the farm and most of his paranoia & > > hallucinations are directed towards her (she's opening back accounts in > > their name, sneaking into the house at night trying to stab my dad with > > needles, stealing their new truck, etc) and every time she comes & goes > > (she refuses to come into the main house anymore) it sets him off. We do > > our best to not talk about anything that will trigger his paranoia but > > sometimes it's out of our control (a week ago neighborhood kids took my > > parent's canoe into their pond on their day off school, which set him off) > > > > I am hoping that the new higher levels of seraquil & the possibility of > > adding clonipan will help level him out again, he did have about 8 months > > of being almost back to normal after his initial diagnosis. There is no LBD > > support group in Charlotte (where I live) but there is one in Greensboro, > > where my parents live. > > > > Any advice on spousal caregiving for my mom? My boyfriend & I sat her down > > & went over the suggestions on interacting on the LBD website & she said > > she's trying to remain calm & not yell at him or get to aggravated with him > > after talking to us. > > > > Thanks! > > > > > > > > > > > > > > -- > Kate Knapp, OIT > University of Minnesota > > > You were born with certain gifts and talents. > In kindergarten you were taught to share. > The world needs all of the gifts it can get. > Don�t be shy. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 Apparently overnight he seems to have gotten even worse, he was in the middle of feeding the horses & someone slowed down at the turn near there house & he ran out into the street yelling at them & left the gate open & a horse got out. luckily the farrier was there & caught the horse. She talked to the Dr again today & he upped him to 12 pills a day & added thorazadone. if he was refusing to take 4 pills 2x a day i'm not sure how he's going to take 13 pills a day but the Dr said he'd call my dad & explain that he prescribed the pills & my mom isn't trying to poison him. We're supposed to wait until Sunday & see how he is. My boyfriend & I are headed up there for the weekend to help take care of him. From what I gather they aren't sure there will be a bed for him at the geriatric psych ward which is why they're trying to hold off. Their farm is a hobby farm, so not huge but they do have tractors, tools & 2 horses that make me concerned for his safety alone for 8-12 hours a day & he lives at a bend in a road in a busy neighborhood so people are always driving by & they have to slow at the bend in the road. It's a shame that my mom's best friend who is living on the farm that all his paranoia is directed towards is a nurse who worked in a dementia/alzheimers wing of a nursing home for 10 years & is the best person to help care for him & he won't let her near him. He even chased her off the lawnmower yesterday. As for my mom's caregiving, she's the first to admit she isn't one, when I was born I was barely 2 lbs & she couldn't handle caring for me so her best friend (the one that still lives with them) raised me as her own. She doesn't do well with emotions or not being in control. My boyfriend & I come on the weekends when we can & when dad had his last bad string of episodes last year I spent 2 months on the farm caring for him & I'll be there for most of March doing the same thing. I'm lucky that I work for myself (I'm a photographer) so I have the luxury of working from a different city for a month at a time if I need to. I own a house in Greensboro that's now a rental & I would LOVE for them to move into it, he could walk to the grocery store (it's 1000 feet away) & there wouldn't be farm upkeep for them to handle. Unfortunately they built an expensive hobby farm worth 1+ million dollars at the height of the market & my mom refuses to sell it or rent it. There is also the issue that whatever money they make from the sale a nursing or skilled care facility can take. My mom is one of those " keeping up appearances " people. she drives a brand new lexus hybrid & can't afford it & built a million dollar home she can't afford so she's now having to work 12 hours a day/7 days a week to keep up with her lifestyle & doesn't have any money left over to care for dad. We tried before they built the farm to move into my house but it wasn't big enough for my mom & the neighborhood wasn't nice enough. sorry, i know I sound harsh on my mom but my sister & i feel like we're dealing with a LBD patient & a child instead of our parents. They've been living outside their means for so long that now when they need the extra money they're spending on a 4400 sf house & 3 expensive cars they don't have money to spare. > > > ** > > > > > > hello all, I'm . My dad was diagnosed with LBD after becoming > > increasingly paranoid & hallucinating. > > > > He was on every drug LBD patients aren't supposed to take until we found a > > wonderful neurologist at UNC that diagnosed his LBD. He has recently > > (earlier this week) slipped back into the extreme paranoia/hallucinations > > and we're not sure if it's him not taking his pills (my mother doesn't > > always watch him) or if the meds just aren't holding him. He was just > > started on heavy doses of seraquil (10 pills a day!) to combat the paranoia > > & hallucinations but it's not helping yet. > > > > I think one of my parent's main issues is their age gap, my mom is 7 years > > younger & still working full time while my dad has been retired for 5 > > years. My dad has gotten to the point where he needs constant supervision & > > cannot ride in a car without outbursts & grabbing the steering wheel so > > he's home alone for 8-12 hours at a time on a farm. His cognitive abilities > > are still very much there but he is hallucinating 90% of the time, he can > > pull it together enough to have a 2 minute conversation with someone on the > > phone & sound normal, but that's about it. > > > > I'm the closest child, I live 2 hours away but I'm also the youngest (I'm > > 29) and I'm having a hard time convincing my mother to work from home & > > help take care of my dad, he's calmer when she stays with him. She would > > rather him go into a geriatric psych ward. It's extremely frustrating for > > my sister & I that my mom is not willing to help my father in any way, > > claiming she's not a caregiver. I also have two step siblings who are 20 > > years older than me who live 10-12 hours away & it's hard to handle half > > siblings & my mother together. His 2 sisters live 2 hours away but they > > don't really understand what's going on even though they've seen him at his > > worst. > > > > My parents have a horse farm & my mom's best friend lives above their > > garage & helps take care of the farm and most of his paranoia & > > hallucinations are directed towards her (she's opening back accounts in > > their name, sneaking into the house at night trying to stab my dad with > > needles, stealing their new truck, etc) and every time she comes & goes > > (she refuses to come into the main house anymore) it sets him off. We do > > our best to not talk about anything that will trigger his paranoia but > > sometimes it's out of our control (a week ago neighborhood kids took my > > parent's canoe into their pond on their day off school, which set him off) > > > > I am hoping that the new higher levels of seraquil & the possibility of > > adding clonipan will help level him out again, he did have about 8 months > > of being almost back to normal after his initial diagnosis. There is no LBD > > support group in Charlotte (where I live) but there is one in Greensboro, > > where my parents live. > > > > Any advice on spousal caregiving for my mom? My boyfriend & I sat her down > > & went over the suggestions on interacting on the LBD website & she said > > she's trying to remain calm & not yell at him or get to aggravated with him > > after talking to us. > > > > Thanks! > > > > > > > > > > > > > > -- > Kate Knapp, OIT > University of Minnesota > > > You were born with certain gifts and talents. > In kindergarten you were taught to share. > The world needs all of the gifts it can get. > Don�t be shy. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 , I'm so glad you have your sister to lean on. I have 3 sisters and I wouldn't have made it through if my youngest sister weren't so close by. An important thing to do with siblings is figure out who is better at each of the needed duties and then let each other handle what you are good at. I have to admit that I haven't got much experience with someone like your mother. It puzzles me how someone so career oriented ends up with a family - and a loving one at that. Don't get me wrong. My career is extremely important to me, too. It sounds like your mom's friend is more like a sister to her and a beloved aunt to you. Or what my niece called me as she was growing up (in a house with me, her grandma and her mom) - her parental unit. It would be nice if your dad accepted her help. She might, though, have some contacts that could help you find a hospital space for your dad. Yes, this would be a time to pull strings, drop names, whatever you need to do. Your mom's difficulties in the nurturing department just might have something to do with your dad's actions. With you in Greensboro, would there be some place in the city that could take him? How comfortable are you with your dad's doctor? Is he a specialist or a family doc? If a family doctor, maybe you could convince him and your mom that your dad should see a specialist in Greensboro, preferably a neuropsychiatrist. It would just be a short step from there to finding hospital or dementia care for your dad. If you do this, tell the specialist's office everything. This honestly does sound like an emergency and worthy of their making time in their schedule for him. Worst case, call an ambulance or take your dad to the ER (something I never advise but in your case I think probably all you have left to you). Once in an ER, they are unlikely to send your dad home if there is any doubt as to his condition. It doesn't have to be the local ER. If you have to drive a few hours to get to one that is in a better position to help, and you can do so safely, do it. Whatever you need to do. One of the things about this disease is that you have to fight for proper care almost every step of the way. It sounds like your dad is taking (or supposed to be taking) some pretty heavy medications. Can you get a second opinion, again from a specialist, about his treatment? How difficult would it be to get your dad to see someone at UNC? If your mom is concerned about finances, it is time to talk to an eldercare attorney if they haven't done so already. Her portion of their assets does need to be protected. Regardless of what they own now or how comfortable their assets are, Lewy can eat it up fast. Your mom is allowed to keep a defined portion of their assets if and when it comes to applying for Medicaid. You need a lawyer and properly drawn up documents for this. Your mom won't be able to keep wealth, but she will be allowed to keep enough to be comfortable. Also, medical directives and power of attorney need to be decided. If your mom is not in a good position to handle these roles, suggest that you or your sister take them on. But know that they are very demanding, even without a spouse to be concerned with. Things are going to be tough for you and your sister for a while. Lean on each other and your partners. Lean on your " parental unit. " Realize that you can only do what you are allowed to do. If your dad won't take his meds or your mom has no ability to be a caregiver, you can't fix that. They both have to accept whatever alternatives are available to them. You sound young. Too young to have to deal with this. But there you are. Do not take on more than you can handle. If that means a change in your parents' living situation, so be it. There may be a few painful weeks or months for them before they figure it out, but they will figure it out. Do not spend your own money on their care. If they do get financially desperate, there are resources available. You can not ruin your own security, your own future, to protect your mom's pride. Believe me. I learned this the hard way. Do not let your parents' crisis threaten your own relationships. You need your friends. Your boyfriend. Lewy is hard on relationships. Lewy can break up families. Lewy can cause devoted couples to split up. Or Lewy can bring you all closer together and help even your mother find talents she never knew she had. Pay attention to how Lewy affects all of you. And, , wow. A 2-pound baby. You survived that. You can survive this, too. Do not hesitate to ask for help. Most people want to help, they just don't know what to do. Best wishes. Kate > ** > > > > Apparently overnight he seems to have gotten even worse, he was in the > middle of feeding the horses & someone slowed down at the turn near there > house & he ran out into the street yelling at them & left the gate open & a > horse got out. luckily the farrier was there & caught the horse. She talked > to the Dr again today & he upped him to 12 pills a day & added thorazadone. > if he was refusing to take 4 pills 2x a day i'm not sure how he's going to > take 13 pills a day but the Dr said he'd call my dad & explain that he > prescribed the pills & my mom isn't trying to poison him. We're supposed to > wait until Sunday & see how he is. My boyfriend & I are headed up there for > the weekend to help take care of him. > > From what I gather they aren't sure there will be a bed for him at the > geriatric psych ward which is why they're trying to hold off. > > Their farm is a hobby farm, so not huge but they do have tractors, tools & > 2 horses that make me concerned for his safety alone for 8-12 hours a day & > he lives at a bend in a road in a busy neighborhood so people are always > driving by & they have to slow at the bend in the road. > > It's a shame that my mom's best friend who is living on the farm that all > his paranoia is directed towards is a nurse who worked in a > dementia/alzheimers wing of a nursing home for 10 years & is the best > person to help care for him & he won't let her near him. He even chased her > off the lawnmower yesterday. > > As for my mom's caregiving, she's the first to admit she isn't one, when I > was born I was barely 2 lbs & she couldn't handle caring for me so her best > friend (the one that still lives with them) raised me as her own. She > doesn't do well with emotions or not being in control. > > My boyfriend & I come on the weekends when we can & when dad had his last > bad string of episodes last year I spent 2 months on the farm caring for > him & I'll be there for most of March doing the same thing. I'm lucky that > I work for myself (I'm a photographer) so I have the luxury of working from > a different city for a month at a time if I need to. > > I own a house in Greensboro that's now a rental & I would LOVE for them to > move into it, he could walk to the grocery store (it's 1000 feet away) & > there wouldn't be farm upkeep for them to handle. Unfortunately they built > an expensive hobby farm worth 1+ million dollars at the height of the > market & my mom refuses to sell it or rent it. There is also the issue that > whatever money they make from the sale a nursing or skilled care facility > can take. > > My mom is one of those " keeping up appearances " people. she drives a brand > new lexus hybrid & can't afford it & built a million dollar home she can't > afford so she's now having to work 12 hours a day/7 days a week to keep up > with her lifestyle & doesn't have any money left over to care for dad. We > tried before they built the farm to move into my house but it wasn't big > enough for my mom & the neighborhood wasn't nice enough. > > sorry, i know I sound harsh on my mom but my sister & i feel like we're > dealing with a LBD patient & a child instead of our parents. They've been > living outside their means for so long that now when they need the extra > money they're spending on a 4400 sf house & 3 expensive cars they don't > have money to spare. > > > > > > > ** > > > > > > > > > > hello all, I'm . My dad was diagnosed with LBD after becoming > > > increasingly paranoid & hallucinating. > > > > > > He was on every drug LBD patients aren't supposed to take until we > found a > > > wonderful neurologist at UNC that diagnosed his LBD. He has recently > > > (earlier this week) slipped back into the extreme > paranoia/hallucinations > > > and we're not sure if it's him not taking his pills (my mother doesn't > > > always watch him) or if the meds just aren't holding him. He was just > > > started on heavy doses of seraquil (10 pills a day!) to combat the > paranoia > > > & hallucinations but it's not helping yet. > > > > > > I think one of my parent's main issues is their age gap, my mom is 7 > years > > > younger & still working full time while my dad has been retired for 5 > > > years. My dad has gotten to the point where he needs constant > supervision & > > > cannot ride in a car without outbursts & grabbing the steering wheel so > > > he's home alone for 8-12 hours at a time on a farm. His cognitive > abilities > > > are still very much there but he is hallucinating 90% of the time, he > can > > > pull it together enough to have a 2 minute conversation with someone > on the > > > phone & sound normal, but that's about it. > > > > > > I'm the closest child, I live 2 hours away but I'm also the youngest > (I'm > > > 29) and I'm having a hard time convincing my mother to work from home & > > > help take care of my dad, he's calmer when she stays with him. She > would > > > rather him go into a geriatric psych ward. It's extremely frustrating > for > > > my sister & I that my mom is not willing to help my father in any way, > > > claiming she's not a caregiver. I also have two step siblings who are > 20 > > > years older than me who live 10-12 hours away & it's hard to handle > half > > > siblings & my mother together. His 2 sisters live 2 hours away but they > > > don't really understand what's going on even though they've seen him > at his > > > worst. > > > > > > My parents have a horse farm & my mom's best friend lives above their > > > garage & helps take care of the farm and most of his paranoia & > > > hallucinations are directed towards her (she's opening back accounts in > > > their name, sneaking into the house at night trying to stab my dad with > > > needles, stealing their new truck, etc) and every time she comes & goes > > > (she refuses to come into the main house anymore) it sets him off. We > do > > > our best to not talk about anything that will trigger his paranoia but > > > sometimes it's out of our control (a week ago neighborhood kids took my > > > parent's canoe into their pond on their day off school, which set him > off) > > > > > > I am hoping that the new higher levels of seraquil & the possibility of > > > adding clonipan will help level him out again, he did have about 8 > months > > > of being almost back to normal after his initial diagnosis. There is > no LBD > > > support group in Charlotte (where I live) but there is one in > Greensboro, > > > where my parents live. > > > > > > Any advice on spousal caregiving for my mom? My boyfriend & I sat her > down > > > & went over the suggestions on interacting on the LBD website & she > said > > > she's trying to remain calm & not yell at him or get to aggravated > with him > > > after talking to us. > > > > > > Thanks! > > > > > > > > > > > > > > > > > > > > > > > -- > > Kate Knapp, OIT > > University of Minnesota > > > > > > You were born with certain gifts and talents. > > In kindergarten you were taught to share. > > The world needs all of the gifts it can get. > > Don�t be shy. > > > > > > Quote Link to comment Share on other sites More sharing options...
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