Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Hi All, Just a thought...is it possible that any of your LO's are on SELEGILINE? My husband used it successfully for a couple of years, and, then, suddenly began to experience great hallucinations....seeing people and animals all over. In the beginning he " saw " federal agents surrounding our house....but this type of hallucination declined, and friendly ones began to appear all over. I would ask him if they were around, and he would always be seeing them. When we went to his neurologist, he took selegiline off the medicine list, and the hallucinations subsided. He no longer has them.....I THINK ....never can tell for sure. This disease is so frustrating!!! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 I am so sorry that you didn't find us 6 months ago. What a terrible time this has been for you. I am sure there will be people that you can help with a support group. In the LBD caregivers files there are lots of helpful lists and articles to help caregivers. I encourage you to search them out and refer to them. There are several on board here who can help you. Just post your questions to the list. One thing I will tell you is that a lot of people (including my husband) are diagnosed with Parkinson's Disease before the diagnosis of LBD is made. They are not the same. Many people are also diagnosed with Alzheimers first. The big difference is the way medications affect them. There are a lot of drugs that LBD patients just cannot tolerate and if they are out of control, it is the first thing most docs will prescribe. That is why an early diagnosis of the LBD is so important. There is a list of " lewy savy " doctors in the LBD Caregivers files that is a big help to people. Lists of meds that are hazardous. Lots of helpful things to learn. Good luck. Keep posting so we can see how things go for you. God Bless You for wanting to help spare others what we all have dealt with. Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. 'Love is not finding someone to live with; it's finding someone you don't want to live without.' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Kelli, my heart aches for you and your family. You've been through severe trauma dealing with your dad's condition and doctors who obviously do not know how to treat LBD. You sound like a strong lady to be starting a support group so quickly. I wish you well with that and hope it helps your healing. Mother aged 91 died Aug 12 2006 after a 13 year decline from PDD > > Hi, > I'm new to the group and joined a week after by father died from LBD > three weeks ago. I didn't realize this group existed and I'm finding out > that I was in the dark about a lot of things regarding LBD and the > terrible journey our family went through, even though I read everything > I could on the internet. My father was able to hide his dementia pretty > well until 2 years ago when we started noticing the " signs. " After being > in and out of numerous doctor's offices, he was diagnosed with > Parkinson's dementia which I understand is LBD. > One day, last July, he just had a meltdown and was severely > hallucinating, knocking over furniture and screaming about dogs having > their heads cut off. He went to the hospital and never came back home. > > He was in and out of psychiatric wards and hospitals for a > month...strapped down with restraints. The meds they gave him made him > worse. Of course, we didn't know what was going on. He finally went to a > lock down facility while they tried to figure out what medication might > work. During that time it was horrific...my father naked on the ground > crawling on all fours. He wouldn't keep his clothes on, would NOT STOP > WALKING or crawling. He didn't not sleep for days...would just > walk...and fall...and walk...and fall. It just got worse and I'm not > going to get into it. > > He had to be moved to 2 more facilities due to his behavior and one > nursing home made it mandatory that we hire a sitter for 24hours because > they couldn't keep an eye on him. We already had a sitter everyday for > 12 hours due to his falling. He looked like he had been in a bad car > wreck, he was so bloody and bruised. A 24hr sitter would be an extra > $12,000 a month on top of the facility rate. > > We couldn't afford that so we opted for heavy sedation after the doctors > highly suggested that it was the best way. It seemed at the time like > the most compassionate thing to do since he was so miserable. I couldn't > stand seeing him like that so I went looking for another dementia > facility further out from Austin. We got lucky and found a wonderful > home for my dad that just happened to have a bed open due to a death. In > retrospect, I think the intake nurse knew my father wasn't going to live > long and could see the pain we were in by having him wilt away under the > influence of heavy drugs. She accepted him and he moved once again. When > he came out of the drug coma, he was worse and never did walk again. > Thirty days last he died from pneumonia. All this happened in 6 months. > During that 6 months, hospice called twice preparing us for death and he > would pull out of it...once he came out eating like a horse and for 3 > beautiful weeks I had my father back. He was lucid, so much so we had > decided to take him home and hospice was not going to reinstate him. He > danced, laughed, called me (sitter dialed) everyday. It was just > unbelievable. Then he went down...came back up worse...went down and > died. > > I'm just now coming out of a 6 month blur trying to understand what the > hell happened and trying my best to connect the dots. I found this book > called The Caregivers Guide to Lewy Body Dementia which has helped > tremendously. > > http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps & field-keyw\ > ords=cargivers+guide+to+lewy+body & x=0 & y=0 > > I wish I would have had a LBD support group but there isn't one in > Austin. Well, I'm starting one. I'm waiting for the meeting space to > approve my proposal, I've taken the training through LBDA.org and I'm > hoping to have it up and running by the last week in March. > > If you live in the area and want more info. Please call me at > or shoot me an email at K > > Take care of each other and much peace to all. > > Kelli > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Hi Kelli, I am sorry for the loss of your father. Like you, I have started a Lewy Body Dementia Caregiver Support Group (in Las Vegas). I want to wish you luck with your group. God bless you, Joan > > Hi, > I'm new to the group and joined a week after by father died from LBD > three weeks ago. I didn't realize this group existed and I'm finding out > that I was in the dark about a lot of things regarding LBD and the > terrible journey our family went through, even though I read everything > I could on the internet. My father was able to hide his dementia pretty > well until 2 years ago when we started noticing the " signs. " After being > in and out of numerous doctor's offices, he was diagnosed with > Parkinson's dementia which I understand is LBD. > One day, last July, he just had a meltdown and was severely > hallucinating, knocking over furniture and screaming about dogs having > their heads cut off. He went to the hospital and never came back home. > > He was in and out of psychiatric wards and hospitals for a > month...strapped down with restraints. The meds they gave him made him > worse. Of course, we didn't know what was going on. He finally went to a > lock down facility while they tried to figure out what medication might > work. During that time it was horrific...my father naked on the ground > crawling on all fours. He wouldn't keep his clothes on, would NOT STOP > WALKING or crawling. He didn't not sleep for days...would just > walk...and fall...and walk...and fall. It just got worse and I'm not > going to get into it. > > He had to be moved to 2 more facilities due to his behavior and one > nursing home made it mandatory that we hire a sitter for 24hours because > they couldn't keep an eye on him. We already had a sitter everyday for > 12 hours due to his falling. He looked like he had been in a bad car > wreck, he was so bloody and bruised. A 24hr sitter would be an extra > $12,000 a month on top of the facility rate. > > We couldn't afford that so we opted for heavy sedation after the doctors > highly suggested that it was the best way. It seemed at the time like > the most compassionate thing to do since he was so miserable. I couldn't > stand seeing him like that so I went looking for another dementia > facility further out from Austin. We got lucky and found a wonderful > home for my dad that just happened to have a bed open due to a death. In > retrospect, I think the intake nurse knew my father wasn't going to live > long and could see the pain we were in by having him wilt away under the > influence of heavy drugs. She accepted him and he moved once again. When > he came out of the drug coma, he was worse and never did walk again. > Thirty days last he died from pneumonia. All this happened in 6 months. > During that 6 months, hospice called twice preparing us for death and he > would pull out of it...once he came out eating like a horse and for 3 > beautiful weeks I had my father back. He was lucid, so much so we had > decided to take him home and hospice was not going to reinstate him. He > danced, laughed, called me (sitter dialed) everyday. It was just > unbelievable. Then he went down...came back up worse...went down and > died. > > I'm just now coming out of a 6 month blur trying to understand what the > hell happened and trying my best to connect the dots. I found this book > called The Caregivers Guide to Lewy Body Dementia which has helped > tremendously. > > http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps & field-keyw\ > ords=cargivers+guide+to+lewy+body & x=0 & y=0 > > I wish I would have had a LBD support group but there isn't one in > Austin. Well, I'm starting one. I'm waiting for the meeting space to > approve my proposal, I've taken the training through LBDA.org and I'm > hoping to have it up and running by the last week in March. > > If you live in the area and want more info. Please call me at > or shoot me an email at K > > Take care of each other and much peace to all. > > Kelli > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Kelli, Hi I am new to the group and I am from Austin, Tx. My father has LBD and my mother is primary caregiver. I have 2 other siblings, one in austin, one in Dallas and I am in Colorado. My mother needs a support group and has a hard time opening up. I am going to be in austin on the 20th thru 23rd I would love to get info about your group to help my mom through this process. I know we will all need help but she puts all the care giving on herself. I am sad a very scared about this process, I can only imagine how she feels. He has had LBD for years, but was treated as Parkinsons and is now deep into hallucinations and delusions, he is now on meds that are geared towards LBD. I will be in Austin every 4-6 weeks as I believe his time is short. Thanks for any help or advice. ________________________________ To: LBDcaregivers Sent: Tue, February 15, 2011 10:10:48 AM Subject: New LBD Caregivers Support Group in Austin Tx! Hi, I'm new to the group and joined a week after by father died from LBD three weeks ago. I didn't realize this group existed and I'm finding out that I was in the dark about a lot of things regarding LBD and the terrible journey our family went through, even though I read everything I could on the internet. My father was able to hide his dementia pretty well until 2 years ago when we started noticing the " signs. " After being in and out of numerous doctor's offices, he was diagnosed with Parkinson's dementia which I understand is LBD. One day, last July, he just had a meltdown and was severely hallucinating, knocking over furniture and screaming about dogs having their heads cut off. He went to the hospital and never came back home. He was in and out of psychiatric wards and hospitals for a month...strapped down with restraints. The meds they gave him made him worse. Of course, we didn't know what was going on. He finally went to a lock down facility while they tried to figure out what medication might work. During that time it was horrific...my father naked on the ground crawling on all fours. He wouldn't keep his clothes on, would NOT STOP WALKING or crawling. He didn't not sleep for days...would just walk...and fall...and walk...and fall. It just got worse and I'm not going to get into it. He had to be moved to 2 more facilities due to his behavior and one nursing home made it mandatory that we hire a sitter for 24hours because they couldn't keep an eye on him. We already had a sitter everyday for 12 hours due to his falling. He looked like he had been in a bad car wreck, he was so bloody and bruised. A 24hr sitter would be an extra $12,000 a month on top of the facility rate. We couldn't afford that so we opted for heavy sedation after the doctors highly suggested that it was the best way. It seemed at the time like the most compassionate thing to do since he was so miserable. I couldn't stand seeing him like that so I went looking for another dementia facility further out from Austin. We got lucky and found a wonderful home for my dad that just happened to have a bed open due to a death. In retrospect, I think the intake nurse knew my father wasn't going to live long and could see the pain we were in by having him wilt away under the influence of heavy drugs. She accepted him and he moved once again. When he came out of the drug coma, he was worse and never did walk again. Thirty days last he died from pneumonia. All this happened in 6 months. During that 6 months, hospice called twice preparing us for death and he would pull out of it...once he came out eating like a horse and for 3 beautiful weeks I had my father back. He was lucid, so much so we had decided to take him home and hospice was not going to reinstate him. He danced, laughed, called me (sitter dialed) everyday. It was just unbelievable. Then he went down...came back up worse...went down and died. I'm just now coming out of a 6 month blur trying to understand what the hell happened and trying my best to connect the dots. I found this book called The Caregivers Guide to Lewy Body Dementia which has helped tremendously. http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps & field-keywords=car\ givers+guide+to+lewy+body & x=0 & y=0 I wish I would have had a LBD support group but there isn't one in Austin. Well, I'm starting one. I'm waiting for the meeting space to approve my proposal, I've taken the training through LBDA.org and I'm hoping to have it up and running by the last week in March. If you live in the area and want more info. Please call me at or shoot me an email at K Take care of each other and much peace to all. Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi Ladies, You made my day. I would love to join. I am in Austin and my mom was dx'd recently (or so i just learned). I am in the process of trying to have her move to Austin. I will send both an you an email with my info. Kelli, I am sorry for the terrible experience you had and consider it a blessing that you are willing to get this group going. Sherrie > > Kelli, > Hi I am new to the group and I am from Austin, Tx. My father has LBD and my > mother is primary caregiver. I have 2 other siblings, one in austin, one in > Dallas and I am in Colorado. My mother needs a support group and has a hard time > opening up. I am going to be in austin on the 20th thru 23rd I would love to get > info about your group to help my mom through this process. I know we will all > need help but she puts all the care giving on herself. I am sad a very scared > about this process, I can only imagine how she feels. He has had LBD for years, > but was treated as Parkinsons and is now deep into hallucinations and delusions, > he is now on meds that are geared towards LBD. I will be in Austin every 4-6 > weeks as I believe his time is short. Thanks for any help or advice. > > > > > > ________________________________ > > To: LBDcaregivers > Sent: Tue, February 15, 2011 10:10:48 AM > Subject: New LBD Caregivers Support Group in Austin Tx! > > > Hi, > I'm new to the group and joined a week after by father died from LBD > three weeks ago. I didn't realize this group existed and I'm finding out > that I was in the dark about a lot of things regarding LBD and the > terrible journey our family went through, even though I read everything > I could on the internet. My father was able to hide his dementia pretty > well until 2 years ago when we started noticing the " signs. " After being > in and out of numerous doctor's offices, he was diagnosed with > Parkinson's dementia which I understand is LBD. > One day, last July, he just had a meltdown and was severely > hallucinating, knocking over furniture and screaming about dogs having > their heads cut off. He went to the hospital and never came back home. > > He was in and out of psychiatric wards and hospitals for a > month...strapped down with restraints. The meds they gave him made him > worse. Of course, we didn't know what was going on. He finally went to a > lock down facility while they tried to figure out what medication might > work. During that time it was horrific...my father naked on the ground > crawling on all fours. He wouldn't keep his clothes on, would NOT STOP > WALKING or crawling. He didn't not sleep for days...would just > walk...and fall...and walk...and fall. It just got worse and I'm not > going to get into it. > > He had to be moved to 2 more facilities due to his behavior and one > nursing home made it mandatory that we hire a sitter for 24hours because > they couldn't keep an eye on him. We already had a sitter everyday for > 12 hours due to his falling. He looked like he had been in a bad car > wreck, he was so bloody and bruised. A 24hr sitter would be an extra > $12,000 a month on top of the facility rate. > > We couldn't afford that so we opted for heavy sedation after the doctors > highly suggested that it was the best way. It seemed at the time like > the most compassionate thing to do since he was so miserable. I couldn't > stand seeing him like that so I went looking for another dementia > facility further out from Austin. We got lucky and found a wonderful > home for my dad that just happened to have a bed open due to a death. In > retrospect, I think the intake nurse knew my father wasn't going to live > long and could see the pain we were in by having him wilt away under the > influence of heavy drugs. She accepted him and he moved once again. When > he came out of the drug coma, he was worse and never did walk again. > Thirty days last he died from pneumonia. All this happened in 6 months. > During that 6 months, hospice called twice preparing us for death and he > would pull out of it...once he came out eating like a horse and for 3 > beautiful weeks I had my father back. He was lucid, so much so we had > decided to take him home and hospice was not going to reinstate him. He > danced, laughed, called me (sitter dialed) everyday. It was just > unbelievable. Then he went down...came back up worse...went down and > died. > > I'm just now coming out of a 6 month blur trying to understand what the > hell happened and trying my best to connect the dots. I found this book > called The Caregivers Guide to Lewy Body Dementia which has helped > tremendously. > > http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps & field-keywords=car\ givers+guide+to+lewy+body & x=0 & y=0 > > > I wish I would have had a LBD support group but there isn't one in > Austin. Well, I'm starting one. I'm waiting for the meeting space to > approve my proposal, I've taken the training through LBDA.org and I'm > hoping to have it up and running by the last week in March. > > If you live in the area and want more info. Please call me at > begin_of_the_skype_highlighting                    end_of_the_skype_\ highlighting or shoot me an email at K > > Take care of each other and much peace to all. > > Kelli > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Kelli - Thank you for starting a support group in your area. I started the one in my area after my mom passed away too. We have all this Lewy knowledge now, it would be a shame to not share it with people new to the disease. You & I both know how difficult it was to acquire it in the first place.... so THANK YOU for starting the group... Have you check the Links section here? a ton of useful info that you can use for your group meetings too... > > Hi, > I'm new to the group and joined a week after by father died from LBD > three weeks ago. I didn't realize this group existed and I'm finding out > that I was in the dark about a lot of things regarding LBD and the > terrible journey our family went through, even though I read everything > I could on the internet. My father was able to hide his dementia pretty > well until 2 years ago when we started noticing the " signs. " After being > in and out of numerous doctor's offices, he was diagnosed with > Parkinson's dementia which I understand is LBD. > One day, last July, he just had a meltdown and was severely > hallucinating, knocking over furniture and screaming about dogs having > their heads cut off. He went to the hospital and never came back home. > > He was in and out of psychiatric wards and hospitals for a > month...strapped down with restraints. The meds they gave him made him > worse. Of course, we didn't know what was going on. He finally went to a > lock down facility while they tried to figure out what medication might > work. During that time it was horrific...my father naked on the ground > crawling on all fours. He wouldn't keep his clothes on, would NOT STOP > WALKING or crawling. He didn't not sleep for days...would just > walk...and fall...and walk...and fall. It just got worse and I'm not > going to get into it. > > He had to be moved to 2 more facilities due to his behavior and one > nursing home made it mandatory that we hire a sitter for 24hours because > they couldn't keep an eye on him. We already had a sitter everyday for > 12 hours due to his falling. He looked like he had been in a bad car > wreck, he was so bloody and bruised. A 24hr sitter would be an extra > $12,000 a month on top of the facility rate. > > We couldn't afford that so we opted for heavy sedation after the doctors > highly suggested that it was the best way. It seemed at the time like > the most compassionate thing to do since he was so miserable. I couldn't > stand seeing him like that so I went looking for another dementia > facility further out from Austin. We got lucky and found a wonderful > home for my dad that just happened to have a bed open due to a death. In > retrospect, I think the intake nurse knew my father wasn't going to live > long and could see the pain we were in by having him wilt away under the > influence of heavy drugs. She accepted him and he moved once again. When > he came out of the drug coma, he was worse and never did walk again. > Thirty days last he died from pneumonia. All this happened in 6 months. > During that 6 months, hospice called twice preparing us for death and he > would pull out of it...once he came out eating like a horse and for 3 > beautiful weeks I had my father back. He was lucid, so much so we had > decided to take him home and hospice was not going to reinstate him. He > danced, laughed, called me (sitter dialed) everyday. It was just > unbelievable. Then he went down...came back up worse...went down and > died. > > I'm just now coming out of a 6 month blur trying to understand what the > hell happened and trying my best to connect the dots. I found this book > called The Caregivers Guide to Lewy Body Dementia which has helped > tremendously. > > http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps & field-keyw\ > ords=cargivers+guide+to+lewy+body & x=0 & y=0 > > I wish I would have had a LBD support group but there isn't one in > Austin. Well, I'm starting one. I'm waiting for the meeting space to > approve my proposal, I've taken the training through LBDA.org and I'm > hoping to have it up and running by the last week in March. > > If you live in the area and want more info. Please call me at > or shoot me an email at K > > Take care of each other and much peace to all. > > Kelli > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Kelli, There is a second book written by Amy and Gerald Throop. They are from MI and her Mom is still alive. The Book is called Living with Lewy's It is very practical and has lots of good tips. I think there is a new web site but it use to be, www.candobooks@... I fixed the addie so it should get you there. You can find a blog Gerald has now too. There is some new sort of info that most people will be interested in about Gov money that someone was talking about a few days ago. Gerald has a discription of it. Before I send this out I will check and see if there is a new website. It is correct. Hugs,, Donna R Cared for Mom 3 years in my home and the last year at a nh. She passed away from LBD in 2002. New LBD Caregivers Support Group in Austin Tx! Hi, I'm new to the group and joined a week after by father died from LBD three weeks ago. I didn't realize this group existed and I'm finding out that I was in the dark about a lot of things regarding LBD and the terrible journey our family went through, even though I read everything I could on the internet. My father was able to hide his dementia pretty well until 2 years ago when we started noticing the " signs. " After being in and out of numerous doctor's offices, he was diagnosed with Parkinson's dementia which I understand is LBD. One day, last July, he just had a meltdown and was severely hallucinating, knocking over furniture and screaming about dogs having their heads cut off. He went to the hospital and never came back home. He was in and out of psychiatric wards and hospitals for a month...strapped down with restraints. The meds they gave him made him worse. Of course, we didn't know what was going on. He finally went to a lock down facility while they tried to figure out what medication might work. During that time it was horrific...my father naked on the ground crawling on all fours. He wouldn't keep his clothes on, would NOT STOP WALKING or crawling. He didn't not sleep for days...would just walk...and fall...and walk...and fall. It just got worse and I'm not going to get into it. He had to be moved to 2 more facilities due to his behavior and one nursing home made it mandatory that we hire a sitter for 24hours because they couldn't keep an eye on him. We already had a sitter everyday for 12 hours due to his falling. He looked like he had been in a bad car wreck, he was so bloody and bruised. A 24hr sitter would be an extra $12,000 a month on top of the facility rate. We couldn't afford that so we opted for heavy sedation after the doctors highly suggested that it was the best way. It seemed at the time like the most compassionate thing to do since he was so miserable. I couldn't stand seeing him like that so I went looking for another dementia facility further out from Austin. We got lucky and found a wonderful home for my dad that just happened to have a bed open due to a death. In retrospect, I think the intake nurse knew my father wasn't going to live long and could see the pain we were in by having him wilt away under the influence of heavy drugs. She accepted him and he moved once again. When he came out of the drug coma, he was worse and never did walk again. Thirty days last he died from pneumonia. All this happened in 6 months. During that 6 months, hospice called twice preparing us for death and he would pull out of it...once he came out eating like a horse and for 3 beautiful weeks I had my father back. He was lucid, so much so we had decided to take him home and hospice was not going to reinstate him. He danced, laughed, called me (sitter dialed) everyday. It was just unbelievable. Then he went down...came back up worse...went down and died. I'm just now coming out of a 6 month blur trying to understand what the hell happened and trying my best to connect the dots. I found this book called The Caregivers Guide to Lewy Body Dementia which has helped tremendously. http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps & field-keyw\ ords=cargivers+guide+to+lewy+body & x=0 & y=0 I wish I would have had a LBD support group but there isn't one in Austin. Well, I'm starting one. I'm waiting for the meeting space to approve my proposal, I've taken the training through LBDA.org and I'm hoping to have it up and running by the last week in March. If you live in the area and want more info. Please call me at or shoot me an email at K Take care of each other and much peace to all. Kelli Quote Link to comment Share on other sites More sharing options...
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