Guest guest Posted March 4, 2012 Report Share Posted March 4, 2012 ,  Has your mom accepted that your dad has LBD? I wonder if you can get her to read literature/information about the disease. There's a lot of information out there. I go to the Lewy Body Dementia Association and Mayo Clinic on the web for the information. Do you have a support group in your area for LBD?  Unfortunately, I do not for my area.  I hate that your family is going through this horrific disease that robs those that have it of a peaceful future.  My dad has it--mom is the caregiver. I am called in to assist at times when I can. My dad is older than yours and is not able to roam around outside the house. You're family are in my thoughts and prayers. Keep us updated on your situation. God bless. Pamela Hutchins ________________________________ To: LBDcaregivers Sent: Thursday, March 1, 2012 3:19 PM Subject: new member  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 4, 2012 Report Share Posted March 4, 2012 ,  Has your mom accepted that your dad has LBD? I wonder if you can get her to read literature/information about the disease. There's a lot of information out there. I go to the Lewy Body Dementia Association and Mayo Clinic on the web for the information. Do you have a support group in your area for LBD?  Unfortunately, I do not for my area.  I hate that your family is going through this horrific disease that robs those that have it of a peaceful future.  My dad has it--mom is the caregiver. I am called in to assist at times when I can. My dad is older than yours and is not able to roam around outside the house. You're family are in my thoughts and prayers. Keep us updated on your situation. God bless. Pamela Hutchins ________________________________ To: LBDcaregivers Sent: Thursday, March 1, 2012 3:19 PM Subject: new member  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 4, 2012 Report Share Posted March 4, 2012 Lindsey, We have a wealth of info in our files too. If you go to the bottom of this message, and enter your password, you can go to Feb 3 and find 's welcome message that has tons of info. Once you are into Yahoo, there is even more in the files and other sections. W e have pictures of many caregivers on here. You are welcome to summit your pictures too. You will find a message at the bottom of this message  that says " Visit your group' and if you click on it, it will take you to Yahoo and you even do a search on messages to find many answers. Hope this helps. This also helps you edit any info you want to edit for yourself. Donna R new member  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 4, 2012 Report Share Posted March 4, 2012 Lindsey, We have a wealth of info in our files too. If you go to the bottom of this message, and enter your password, you can go to Feb 3 and find 's welcome message that has tons of info. Once you are into Yahoo, there is even more in the files and other sections. W e have pictures of many caregivers on here. You are welcome to summit your pictures too. You will find a message at the bottom of this message  that says " Visit your group' and if you click on it, it will take you to Yahoo and you even do a search on messages to find many answers. Hope this helps. This also helps you edit any info you want to edit for yourself. Donna R new member  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 4, 2012 Report Share Posted March 4, 2012 Lindsey, We have a wealth of info in our files too. If you go to the bottom of this message, and enter your password, you can go to Feb 3 and find 's welcome message that has tons of info. Once you are into Yahoo, there is even more in the files and other sections. W e have pictures of many caregivers on here. You are welcome to summit your pictures too. You will find a message at the bottom of this message  that says " Visit your group' and if you click on it, it will take you to Yahoo and you even do a search on messages to find many answers. Hope this helps. This also helps you edit any info you want to edit for yourself. Donna R new member  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...
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