Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Susie, Sorry, I am not one to ask about drugs. But if you go to the bottom of these messages and go to the Yahoo site, itself, you will find the files and links. You can go in and look up meds or drugs and I am sure has a lot of things in there for you to use. I have never heard of the pain med you are giving your Dad. NORCO? But here is a site you can go and look up any drug you want. http://www.drugs.com/ You will at least be able to see what you need about this pain drug. I am not sure where everyone is tonight but maybe it is a night out. Or you still might hear. I know Imogene is busy with Don and has him in the Hospital. Jan was having some problems with Jim but I think she got his bowels going and all is better now. Lin won't be on until she is at work. She doesn't have a computer at home. And I just couldn't give Mom anything for drugs she just reacted so badly. The MDs and NH didn't like me, but Mom was far less problems on no drugs than she was with some she took. Hope someone can help. I did give Mom drugs during her last week and I am drawing a blank. It was to keep her comfortable until she passed. Morphine! (The more I typed then it came to me.) But while your Dad sounds sick, it doesn't sound like he is dying? Hope things get better. Hugs., Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Caring for my pops,,, Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 Susie, Has someone told you your father is in the last stage? You mention that you are thinking of having your father weaned off of the sinemet. I think technically my husband may have Parkinson's with dementia (related to LBD). I do give him quite a lot of sinemet because he would be a BEAR if he was immobile. He also can get a bad tremor especially if he ate protein and it blocks the absorption of the sinemet. He had a bowl of cereal in milk this morning and had his tremor that eventually his whole body shook for a couple of hours. I can actually see when the sinemet kicks in. I am only sharing because I do not have any advice since so many LBDers do not tolerate sinemet. As for the seroquel, I think that is one of the few anti-psychotics that LBDers can handle at a low dose. My husband takes 25 mgs at night. Lately I have given him 1/2 pill during the day if he is agitated -seems he may beginning to sundown. Does your father take Aricept? My husband's neuropsychiatrist said aricept can make the tremor worse and told us to cut the 10 mg pill in half. Just some thoughts Lorraine > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 Lorraine, and Susie, Can't figure out where everyone is. The messages are few and in-between. Maybe everyone is on face book. Or else out doing a BBQ. LOL! I do know we have about 3 new members and I haven't seen them either. Hi Newcomers if you are out there. Just jump in. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Caring for my pops,,, Susie, Has someone told you your father is in the last stage? You mention that you are thinking of having your father weaned off of the sinemet. I think technically my husband may have Parkinson's with dementia (related to LBD). I do give him quite a lot of sinemet because he would be a BEAR if he was immobile. He also can get a bad tremor especially if he ate protein and it blocks the absorption of the sinemet. He had a bowl of cereal in milk this morning and had his tremor that eventually his whole body shook for a couple of hours. I can actually see when the sinemet kicks in. I am only sharing because I do not have any advice since so many LBDers do not tolerate sinemet. As for the seroquel, I think that is one of the few anti-psychotics that LBDers can handle at a low dose. My husband takes 25 mgs at night. Lately I have given him 1/2 pill during the day if he is agitated -seems he may beginning to sundown. Does your father take Aricept? My husband's neuropsychiatrist said aricept can make the tremor worse and told us to cut the 10 mg pill in half. Just some thoughts Lorraine > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 Dear lorraine,,, Thanks for the thoughts and feedback,,, my Dad is immobile and has been for the past 5 months,,, his body is trying to curl up in a ball??? and yes the doctors agree he is in the later stages,,, he has never been on simenet,, he takes mirapex and stelavo for his parkinsonisms,,, but as I said before,,, they do absolutly nothing to help anymore,,,, they used to, but no longer.   I am however happy to report that the seroquel is helping!!! his tremors, his speach, his sleep and was alot more lucid today! PRAISE GOD!  Thanks for your feedback! and goodluck with your Daddy! Susie Subject: Re: Caring for my pops,,, To: LBDcaregivers Date: Saturday, June 27, 2009, 3:34 PM Susie, Has someone told you your father is in the last stage? You mention that you are thinking of having your father weaned off of the sinemet. I think technically my husband may have Parkinson's with dementia (related to LBD). I do give him quite a lot of sinemet because he would be a BEAR if he was immobile. He also can get a bad tremor especially if he ate protein and it blocks the absorption of the sinemet. He had a bowl of cereal in milk this morning and had his tremor that eventually his whole body shook for a couple of hours. I can actually see when the sinemet kicks in. I am only sharing because I do not have any advice since so many LBDers do not tolerate sinemet. As for the seroquel, I think that is one of the few anti-psychotics that LBDers can handle at a low dose. My husband takes 25 mgs at night. Lately I have given him 1/2 pill during the day if he is agitated -seems he may beginning to sundown. Does your father take Aricept? My husband's neuropsychiatrist said aricept can make the tremor worse and told us to cut the 10 mg pill in half. Just some thoughts Lorraine > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 Hi Donna,,, I noticed that too???? wonder whats up? The seroquel helped Dad greatly! PRAISE GOD! ( as much as I love reading everones posts,,, a BBQ don't sound half bad!!!! IM HUNGRY! LOL! HUGS... SUSIE Susie Subject: Re: Re: Caring for my pops,,, To: LBDcaregivers Date: Saturday, June 27, 2009, 7:50 PM Lorraine, and Susie, Can't figure out where everyone is. The messages are few and in-between. Maybe everyone is on face book. Or else out doing a BBQ. LOL! I do know we have about 3 new members and I haven't seen them either. Hi Newcomers if you are out there. Just jump in. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Caring for my pops,,, Susie, Has someone told you your father is in the last stage? You mention that you are thinking of having your father weaned off of the sinemet. I think technically my husband may have Parkinson's with dementia (related to LBD). I do give him quite a lot of sinemet because he would be a BEAR if he was immobile. He also can get a bad tremor especially if he ate protein and it blocks the absorption of the sinemet. He had a bowl of cereal in milk this morning and had his tremor that eventually his whole body shook for a couple of hours. I can actually see when the sinemet kicks in. I am only sharing because I do not have any advice since so many LBDers do not tolerate sinemet. As for the seroquel, I think that is one of the few anti-psychotics that LBDers can handle at a low dose. My husband takes 25 mgs at night. Lately I have given him 1/2 pill during the day if he is agitated -seems he may beginning to sundown. Does your father take Aricept? My husband's neuropsychiatrist said aricept can make the tremor worse and told us to cut the 10 mg pill in half. Just some thoughts Lorraine > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 FYI...thre are only two posts on the Facebook site, one from and on from Imogene and they have both been there for a while. I wish that I knew enough about the subjects discussed here in the last couple of days to respond. Love and prayers to all, Joan > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Thanks Joan, I can't get into face book and it is good to know this may just be a problem no matter where anyone is at or what site they are on. Someone suggest the might be slowing stuff down. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Caring for my pops,,, FYI...thre are only two posts on the Facebook site, one from and on from Imogene and they have both been there for a while. I wish that I knew enough about the subjects discussed here in the last couple of days to respond. Love and prayers to all, Joan > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Haven't checked the messages for a couple days as I have been busy with work and my husband. My job is very stressful and now Pete is going down hill on the roller coaster. He has been doing so well for the past few months and all of a sudden he can hardly stand to transfer, drowling more, and leaning alot. No new meds or any health issues that are noticable. LDB is so frustrating. I guess today all I needed was a personal pity party.  ________________________________ To: LBDcaregivers Sent: Sunday, June 28, 2009 3:35:26 PM Subject: Re: Re: Caring for my pops,,, Thanks Joan, I can't get into face book and it is good to know this may just be a problem no matter where anyone is at or what site they are on. Someone suggest the might be slowing stuff down. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Caring for my pops,,, FYI...thre are only two posts on the Facebook site, one from and on from Imogene and they have both been there for a while. I wish that I knew enough about the subjects discussed here in the last couple of days to respond. Love and prayers to all, Joan > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain.... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Dear , I'm sorry to hear the news... but as you say, LBD is so frustrating. Go ahead - you are entitled to your pity party big time! I came home a while ago from my Mom's, and while she was pretty lucid, she's physically more frail, more leaned, and the hands do curl a bit when they aren't being used. It's sad, scary, awful...... I was at Mom's for a long while today, so my aunt (the caregiver) could go to a party... I am thankful for the time we have together, and when I can make her laugh and smile... and I hide in the bathroom when I feel the tears coming, and then I have to wash my face with cold water, so she won't notice - funny thing, she doesn't notice so many things, yet my teary, red, or swollen eyes she notices. Hugs and good thoughts, Helene > > > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > > > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > > > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > > > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain.... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Hello, I am one of your new members but I am not sure what it is I am supposed to do. Do I reply to each email or go on a site? I am not even sure if I am in the right site. My husband was diagnosed with dementia, he is only 63. I just wanted to talk with people about this that are going through the same thing as me. I really need a friend with knowledge. Let me know if I am on the right track or not. Thanks  Carolyn Subject: Re: Re: Caring for my pops,,, To: LBDcaregivers Date: Saturday, June 27, 2009, 4:50 PM Lorraine, and Susie, Can't figure out where everyone is. The messages are few and in-between. Maybe everyone is on face book. Or else out doing a BBQ. LOL! I do know we have about 3 new members and I haven't seen them either. Hi Newcomers if you are out there. Just jump in. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Caring for my pops,,, Susie, Has someone told you your father is in the last stage? You mention that you are thinking of having your father weaned off of the sinemet. I think technically my husband may have Parkinson's with dementia (related to LBD). I do give him quite a lot of sinemet because he would be a BEAR if he was immobile. He also can get a bad tremor especially if he ate protein and it blocks the absorption of the sinemet. He had a bowl of cereal in milk this morning and had his tremor that eventually his whole body shook for a couple of hours. I can actually see when the sinemet kicks in. I am only sharing because I do not have any advice since so many LBDers do not tolerate sinemet. As for the seroquel, I think that is one of the few anti-psychotics that LBDers can handle at a low dose. My husband takes 25 mgs at night. Lately I have given him 1/2 pill during the day if he is agitated -seems he may beginning to sundown. Does your father take Aricept? My husband's neuropsychiatrist said aricept can make the tremor worse and told us to cut the 10 mg pill in half. Just some thoughts Lorraine > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Hello, I am one of your new members but I am not sure what it is I am supposed to do. Do I reply to each email or go on a site? I am not even sure if I am in the right site. My husband was diagnosed with dementia, he is only 63. I just wanted to talk with people about this that are going through the same thing as me. I really need a friend with knowledge. Let me know if I am on the right track or not. Thanks > > > > > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > > > > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > > > > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > > > > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain.... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 , Whenever Mom did a nose dive, her doctor always check for a UTI. (Uran. trac. infection.) I would always forget but he never did and always said " bring her in and we will check for a UTI. " Just a thought. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Caring for my pops,,, FYI...thre are only two posts on the Facebook site, one from and on from Imogene and they have both been there for a while. I wish that I knew enough about the subjects discussed here in the last couple of days to respond. Love and prayers to all, Joan > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain.... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Hi Carolyn, You are doing just fine. You are at the right place, or we usually say a place you would rather not want to be but glad you are here. You can either answer from your home email or go to Yahoo if you would rather. You can send your own message or answer one that is here. If you find you are getting to many email, you can chose to get them in a digest and they will come up to 25 per email. You can also shut the email off at Yahoo if you would like. Usually if you go to the bottom of an email you should be able to go to Yahoo and edit your membership however you would like. That way you can stay a member and go in and read when you want. We can't do attachments here, but you can forward to the group if you want. Just jump in and ask questions as you go. You can search old messages about anything you would like too. I will send our welcome message and you will find lots to read in the links and files at Yahoo. Hope this helps. Hugs, Donna R (Co-owner of this group) Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Caring for my pops,,, Hello, I am one of your new members but I am not sure what it is I am supposed to do. Do I reply to each email or go on a site? I am not even sure if I am in the right site. My husband was diagnosed with dementia, he is only 63. I just wanted to talk with people about this that are going through the same thing as me. I really need a friend with knowledge. Let me know if I am on the right track or not. Thanks > > > > > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > > > > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > > > > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > > > > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain.... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Susie and Lorraine, I am guessing you may have both heard this before but the PD meds and the aricept will fight and you need to find a balance that will with work with your LOs. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Caring for my pops,,, Susie, Has someone told you your father is in the last stage? You mention that you are thinking of having your father weaned off of the sinemet. I think technically my husband may have Parkinson's with dementia (related to LBD). I do give him quite a lot of sinemet because he would be a BEAR if he was immobile. He also can get a bad tremor especially if he ate protein and it blocks the absorption of the sinemet. He had a bowl of cereal in milk this morning and had his tremor that eventually his whole body shook for a couple of hours. I can actually see when the sinemet kicks in. I am only sharing because I do not have any advice since so many LBDers do not tolerate sinemet. As for the seroquel, I think that is one of the few anti-psychotics that LBDers can handle at a low dose. My husband takes 25 mgs at night. Lately I have given him 1/2 pill during the day if he is agitated -seems he may beginning to sundown. Does your father take Aricept? My husband's neuropsychiatrist said aricept can make the tremor worse and told us to cut the 10 mg pill in half. Just some thoughts Lorraine > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for awhile, but had to call in state board to get the problem with dads care fixed,,, been there twice a day sinse.... Mom and I made an appt with his doctor to discuss his care,,, ( as we hadn't seen him at the NH for the past 3 months! > altho I've not posted I continue to read all your heartfelt stories and advice,,,, I went out on a limb and discussed the use of seraquil for dad with his doctor,,, I made them discontinue the Iron, (causing bowel empaction), he was getting 3 times a day and all the useless vitamins they was shoving down him,,, I told them to discontinue his prozac ( giving originally for figiting) and told them under no circemstances was they to give him any Ativan! > He is still on his parkinsons med's , but we have an appt with a new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, and plan to have him weaned off his parkinsons meds,,, at this stage they arent doin anything for him,,, ( he is in the last stages)... the day after fathers day he suffered another TIA and has one eyelid drooping, cannot squeeze with his right hand and has dysphazia,,, ( trouble swallowing and choking.... he is loosing an average of a pound a day in weight,,, he can no longer speak with ANY volume... that night he asperated some vomit into his lungs and currently has fluid on his lungs that they are treating with lasix?? He has no interest in eating,,, but tries very hard to drink.... My poor beautiful Daddy... > He is shaking and tremoring so hard he cant stand it! Tonight they gave him seroquil 25 mg... for this, ( for the first time) and to help him relax and sleep as well as NORCO for pain... am waiting to see if this will help,,,, am I doing the right thing??? are these the right meds for him??? I soooo just want to keep him comfortable and ease his suffering??? Thanks for listning and would sure appreciate some feedback... Hugs and heartfelt appreciation to all! Susie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Welcome Carolyn, Your husband is young to have dementia. Is it specifially Lewy Body, because LBD is unique in many ways? You will learn lots here to help him and yourself through the journey if his dementia is with Lewy Bodies. Reply to any emails you wish to, or start your own topic. We have other spouses here and there is also a group specifically for spouses of someone with LBD. Lurk when you want, reply when you wish to, initiate a topic to share something or ask about anything. We'd be interested to hear more about your husband if you wish to share. Gibsons BC Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > > > > > > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for > awhile, but had to call in state board to get the problem with dads care > fixed,,, been there twice a day sinse.... Mom and I made an appt with > his doctor to discuss his care,,, ( as we hadn't seen him at the NH for > the past 3 months! > > > > > altho I've not posted I continue to read all your heartfelt > stories and advice,,,, I went out on a limb and discussed the use of > seraquil for dad with his doctor,,, I made them discontinue the Iron, > (causing bowel empaction), he was getting 3 times a day and all the > useless vitamins they was shoving down him,,, I told them to discontinue > his prozac ( giving originally for figiting) and told them under no > circemstances was they to give him any Ativan! > > > > > He is still on his parkinsons med's , but we have an appt with a > new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, > and plan to have him weaned off his parkinsons meds,,, at this stage > they arent doin anything for him,,, ( he is in the last stages)... the > day after fathers day he suffered another TIA and has one eyelid > drooping, cannot squeeze with his right hand and has dysphazia,,, ( > trouble swallowing and choking.... he is loosing an average of a pound a > day in weight,,, he can no longer speak with ANY volume... that night he > asperated some vomit into his lungs and currently has fluid on his lungs > that they are treating with lasix?? He has no interest in eating,,, but > tries very hard to drink.... My poor beautiful Daddy... > > > > > He is shaking and tremoring so hard he cant stand it! Tonight > they gave him seroquil 25 mg... for this, ( for the first time) and to > help him relax and sleep as well as NORCO for pain.... am waiting to see > if this will help,,,, am I doing the right thing??? are these the right > meds for him??? I soooo just want to keep him comfortable and ease his > suffering??? Thanks for listning and would sure appreciate some > feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Yes that is one of my concerns, his age. He is also a diabetic. He first noticed he was forgetting things and I noticed a change in his behavior and he was having what I thought were mini strokes so I made him go to his Dr and get a brain scan. I also went with him to get his read out. His Dr said he did not have Alzheimer there was no shrikage of the brain but he was having some brain strokes and it was the beginning of dementia so they gave him a pill to help slow this down. That was it. One I do not get alone with his Doctor and the Dr is not helpful at all. I asked what we could do and he said well if this continues he the Dr could send my husband to a neurologist but he does not see what another Dr could do that he could not do. Anyway Phil (my husband) started taking what we call the brain pill and he seemed to be doing better. But last night I think he had another small strok. There is a lot more to this story but this is just to give you a little insite. Subject: Re: Caring for my pops,,, To: LBDcaregivers Date: Monday, June 29, 2009, 10:15 AM Welcome Carolyn, Your husband is young to have dementia. Is it specifially Lewy Body, because LBD is unique in many ways? You will learn lots here to help him and yourself through the journey if his dementia is with Lewy Bodies. Reply to any emails you wish to, or start your own topic. We have other spouses here and there is also a group specifically for spouses of someone with LBD. Lurk when you want, reply when you wish to, initiate a topic to share something or ask about anything. We'd be interested to hear more about your husband if you wish to share. Gibsons BC Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > > > > > > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for > awhile, but had to call in state board to get the problem with dads care > fixed,,, been there twice a day sinse.... Mom and I made an appt with > his doctor to discuss his care,,, ( as we hadn't seen him at the NH for > the past 3 months! > > > > > altho I've not posted I continue to read all your heartfelt > stories and advice,,,, I went out on a limb and discussed the use of > seraquil for dad with his doctor,,, I made them discontinue the Iron, > (causing bowel empaction), he was getting 3 times a day and all the > useless vitamins they was shoving down him,,, I told them to discontinue > his prozac ( giving originally for figiting) and told them under no > circemstances was they to give him any Ativan! > > > > > He is still on his parkinsons med's , but we have an appt with a > new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, > and plan to have him weaned off his parkinsons meds,,, at this stage > they arent doin anything for him,,, ( he is in the last stages)... the > day after fathers day he suffered another TIA and has one eyelid > drooping, cannot squeeze with his right hand and has dysphazia,,, ( > trouble swallowing and choking.... he is loosing an average of a pound a > day in weight,,, he can no longer speak with ANY volume... that night he > asperated some vomit into his lungs and currently has fluid on his lungs > that they are treating with lasix?? He has no interest in eating,,, but > tries very hard to drink.... My poor beautiful Daddy... > > > > > He is shaking and tremoring so hard he cant stand it! Tonight > they gave him seroquil 25 mg... for this, ( for the first time) and to > help him relax and sleep as well as NORCO for pain.... am waiting to see > if this will help,,,, am I doing the right thing??? are these the right > meds for him??? I soooo just want to keep him comfortable and ease his > suffering??? Thanks for listning and would sure appreciate some > feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Thanks for the information Carolyn. Do you think there is dementia along with stroke effects? What diagnosing features does your husband have to determine LBD, and what " brain pill " is he taking? Fluctuation in cognitive ability, " show time " when needed for family, friends, doctors, as in putting on a good cognitive display for a short time, and hallucinations are some common LBD symptoms. You'll find much information in our links section to help you understand Lewy Body better. Looking forward to hearing the story unfold more. > > > > > > > > > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for > > awhile, but had to call in state board to get the problem with dads care > > fixed,,, been there twice a day sinse.... Mom and I made an appt with > > his doctor to discuss his care,,, ( as we hadn't seen him at the NH for > > the past 3 months! > > > > > > altho I've not posted I continue to read all your heartfelt > > stories and advice,,,, I went out on a limb and discussed the use of > > seraquil for dad with his doctor,,, I made them discontinue the Iron, > > (causing bowel empaction), he was getting 3 times a day and all the > > useless vitamins they was shoving down him,,, I told them to discontinue > > his prozac ( giving originally for figiting) and told them under no > > circemstances was they to give him any Ativan! > > > > > > He is still on his parkinsons med's , but we have an appt with a > > new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, > > and plan to have him weaned off his parkinsons meds,,, at this stage > > they arent doin anything for him,,, ( he is in the last stages)... the > > day after fathers day he suffered another TIA and has one eyelid > > drooping, cannot squeeze with his right hand and has dysphazia,,, ( > > trouble swallowing and choking.... he is loosing an average of a pound a > > day in weight,,, he can no longer speak with ANY volume... that night he > > asperated some vomit into his lungs and currently has fluid on his lungs > > that they are treating with lasix?? He has no interest in eating,,, but > > tries very hard to drink.... My poor beautiful Daddy... > > > > > > He is shaking and tremoring so hard he cant stand it! Tonight > > they gave him seroquil 25 mg... for this, ( for the first time) and to > > help him relax and sleep as well as NORCO for pain.... am waiting to see > > if this will help,,,, am I doing the right thing??? are these the right > > meds for him??? I soooo just want to keep him comfortable and ease his > > suffering??? Thanks for listning and would sure appreciate some > > feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 I am not real clear on what you are asking me? His Dr is the one who said he has the start of dementia. That is one of the reasons I said I was not sure I was on the right site as you all keep talking about LBD. The pill he is on is called Namenda. Subject: Re: Caring for my pops,,, To: LBDcaregivers Date: Monday, June 29, 2009, 5:34 PM Thanks for the information Carolyn. Do you think there is dementia along with stroke effects? What diagnosing features does your husband have to determine LBD, and what " brain pill " is he taking? Fluctuation in cognitive ability, " show time " when needed for family, friends, doctors, as in putting on a good cognitive display for a short time, and hallucinations are some common LBD symptoms. You'll find much information in our links section to help you understand Lewy Body better. Looking forward to hearing the story unfold more. --- In Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 carolyn,,,, Get a neaurologist,,, one thats skilled in Lewy body,,, just in case,,, as it is the worst,,, and just any doctor could do more harm than good as LBD sufferers are very sensitive to most meds!!!  One sign is they sleep alot during the day,,, confusion gets alot worse at night and visual hallucinations... Your in the right place for help,,,! God Bless you and your LO!!! were always here for you! Susie Susie Subject: Re: Caring for my pops,,, To: LBDcaregivers Date: Monday, June 29, 2009, 8:34 PM Thanks for the information Carolyn. Do you think there is dementia along with stroke effects? What diagnosing features does your husband have to determine LBD, and what " brain pill " is he taking? Fluctuation in cognitive ability, " show time " when needed for family, friends, doctors, as in putting on a good cognitive display for a short time, and hallucinations are some common LBD symptoms. You'll find much information in our links section to help you understand Lewy Body better. Looking forward to hearing the story unfold more. > > > > > > > > > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for > > awhile, but had to call in state board to get the problem with dads care > > fixed,,, been there twice a day sinse.... Mom and I made an appt with > > his doctor to discuss his care,,, ( as we hadn't seen him at the NH for > > the past 3 months! > > > > > > altho I've not posted I continue to read all your heartfelt > > stories and advice,,,, I went out on a limb and discussed the use of > > seraquil for dad with his doctor,,, I made them discontinue the Iron, > > (causing bowel empaction), he was getting 3 times a day and all the > > useless vitamins they was shoving down him,,, I told them to discontinue > > his prozac ( giving originally for figiting) and told them under no > > circemstances was they to give him any Ativan! > > > > > > He is still on his parkinsons med's , but we have an appt with a > > new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, > > and plan to have him weaned off his parkinsons meds,,, at this stage > > they arent doin anything for him,,, ( he is in the last stages)... the > > day after fathers day he suffered another TIA and has one eyelid > > drooping, cannot squeeze with his right hand and has dysphazia,,, ( > > trouble swallowing and choking.... he is loosing an average of a pound a > > day in weight,,, he can no longer speak with ANY volume... that night he > > asperated some vomit into his lungs and currently has fluid on his lungs > > that they are treating with lasix?? He has no interest in eating,,, but > > tries very hard to drink.... My poor beautiful Daddy... > > > > > > He is shaking and tremoring so hard he cant stand it! Tonight > > they gave him seroquil 25 mg... for this, ( for the first time) and to > > help him relax and sleep as well as NORCO for pain.... am waiting to see > > if this will help,,,, am I doing the right thing??? are these the right > > meds for him??? I soooo just want to keep him comfortable and ease his > > suffering??? Thanks for listning and would sure appreciate some > > feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Hi Carolyn, Did your doctor ever mention that he had LBD, or Dementia with Lewy Bodies in particular. There are many types of dementia - Alzheimer's being the most common. Dementia with Lewy Bodies (LBD) is the second most common and it has symptoms of both dementia and Parkinsonism. There is also vascular dementia that is caused from strokes. LBD patients have different reactions to the common dementia medications. Also, with LBD the cognition fluctuates and in the beginning any signs of dementia are very few and very far between. Therefore our loved ones suffer from this disease well before a diagnosis is usually made, and many doctors don't know enough about LBD to know the difference and then to know that they cannot use all of the same medications on LBD patients as they do for Alzheimers patients. Take a look at the www.lbda.org and you will see the symptoms of LBD. If your doctor has not specified LBD and the symptoms don't sound like they match your dad right now, then visit the Alzheimers Assn website. They have many resources there also and they also have people that can talk to you and answer any questions that you might have. Ask very specific questions of your dad's doctor to know what kind of dementia that your dad has and also make sure that your dad gets a neurologist who is knowledgable to make the correct diagnosis so that your dad can get the proper treatment. Hugs and prayers, Joan > > > > Subject: Re: Caring for my pops,,, > To: LBDcaregivers > Date: Monday, June 29, 2009, 5:34 PM > > > > > > > > > Thanks for the information Carolyn. Do you think there is dementia along with stroke effects? What diagnosing features does your husband have to determine LBD, and what " brain pill " is he taking? Fluctuation in cognitive ability, " show time " when needed for family, friends, doctors, as in putting on a good cognitive display for a short time, and hallucinations are some common LBD symptoms. You'll find much information in our links section to help you understand Lewy Body better. > Looking forward to hearing the story unfold more. > > > --- In > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 I will look at those links but I think I remember the Dr saying something about vascular dementia. He said my husband has lost some of his receptor the parts that let the brain talk with itself. This is caused because of the stokes (i think) Subject: Re: Caring for my pops,,, To: LBDcaregivers Date: Monday, June 29, 2009, 10:07 PM Hi Carolyn, Did your doctor ever mention that he had LBD, or Dementia with Lewy Bodies in particular. There are many types of dementia - Alzheimer's being the most common. Dementia with Lewy Bodies (LBD) is the second most common and it has symptoms of both dementia and Parkinsonism. There is also vascular dementia that is caused from strokes. LBD patients have different reactions to the common dementia medications. Also, with LBD the cognition fluctuates and in the beginning any signs of dementia are very few and very far between. Therefore our loved ones suffer from this disease well before a diagnosis is usually made, and many doctors don't know enough about LBD to know the difference and then to know that they cannot use all of the same medications on LBD patients as they do for Alzheimers patients. Take a look at the www.lbda.org and you will see the symptoms of LBD. If your doctor has not specified LBD and the symptoms don't sound like they match your dad right now, then visit the Alzheimers Assn website. They have many resources there also and they also have people that can talk to you and answer any questions that you might have. Ask very specific questions of your dad's doctor to know what kind of dementia that your dad has and also make sure that your dad gets a neurologist who is knowledgable to make the correct diagnosis so that your dad can get the proper treatment. Hugs and prayers, Joan > > > > Subject: Re: Caring for my pops,,, > To: LBDcaregivers@ yahoogroups. com > Date: Monday, June 29, 2009, 5:34 PM > > > > > > > > > Thanks for the information Carolyn. Do you think there is dementia along with stroke effects? What diagnosing features does your husband have to determine LBD, and what " brain pill " is he taking? Fluctuation in cognitive ability, " show time " when needed for family, friends, doctors, as in putting on a good cognitive display for a short time, and hallucinations are some common LBD symptoms. You'll find much information in our links section to help you understand Lewy Body better. > Looking forward to hearing the story unfold more. > > > --- In > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 I asked him tonight if he ever had hallucinations, he was not sure what that was. I think I made him understand and he said no not that he knows of. I will call a neurologist tomorrow. Have been thinking of doing that. One of my real problems is I do not know if I should talk to him about this illness. I did once and he said he was going to kill himself before he got bad. Yes that sent up a single and I called the people for help the next day, only problem was they sent us to a marriage counselor. Great Hu? Right now this man still works and does most everything like he did before. He just has a bad day here and there. Seems they are on the week ends when he is off or I just don't see it because he is at work. There are a lot of changes in his personality. For one he use to be the most passive person you would ever meet, now at times (not always) he will argue over anything. Plus he has to know where I am at all time. (Never was he like this). He will come in and stand over my computer and try and read what I am doing. Again this is not something he would ever do. Just all these little things. From: stimtimminss <stimdccnet (DOT) com> Subject: Re: Caring for my pops,,, To: LBDcaregivers@ yahoogroups. com Date: Monday, June 29, 2009, 8:34 PM Thanks for the information Carolyn. Do you think there is dementia along with stroke effects? What diagnosing features does your husband have to determine LBD, and what " brain pill " is he taking? Fluctuation in cognitive ability, " show time " when needed for family, friends, doctors, as in putting on a good cognitive display for a short time, and hallucinations are some common LBD symptoms. You'll find much information in our links section to help you understand Lewy Body better. Looking forward to hearing the story unfold more. > > > > > > > > > > > > Dear Imogene, Lynn, or anyone,,,, I'm sorry I haven't posted for > > awhile, but had to call in state board to get the problem with dads care > > fixed,,, been there twice a day sinse.... Mom and I made an appt with > > his doctor to discuss his care,,, ( as we hadn't seen him at the NH for > > the past 3 months! > > > > > > altho I've not posted I continue to read all your heartfelt > > stories and advice,,,, I went out on a limb and discussed the use of > > seraquil for dad with his doctor,,, I made them discontinue the Iron, > > (causing bowel empaction), he was getting 3 times a day and all the > > useless vitamins they was shoving down him,,, I told them to discontinue > > his prozac ( giving originally for figiting) and told them under no > > circemstances was they to give him any Ativan! > > > > > > He is still on his parkinsons med's , but we have an appt with a > > new neaurolist on July 8th that is skilled in the care of LEWY BODY,,,, > > and plan to have him weaned off his parkinsons meds,,, at this stage > > they arent doin anything for him,,, ( he is in the last stages)... the > > day after fathers day he suffered another TIA and has one eyelid > > drooping, cannot squeeze with his right hand and has dysphazia,,, ( > > trouble swallowing and choking.... he is loosing an average of a pound a > > day in weight,,, he can no longer speak with ANY volume... that night he > > asperated some vomit into his lungs and currently has fluid on his lungs > > that they are treating with lasix?? He has no interest in eating,,, but > > tries very hard to drink.... My poor beautiful Daddy... > > > > > > He is shaking and tremoring so hard he cant stand it! Tonight > > they gave him seroquil 25 mg... for this, ( for the first time) and to > > help him relax and sleep as well as NORCO for pain.... am waiting to see > > if this will help,,,, am I doing the right thing??? are these the right > > meds for him??? I soooo just want to keep him comfortable and ease his > > suffering??? Thanks for listning and would sure appreciate some > > feedback... Hugs and heartfelt appreciation to all! Susie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2009 Report Share Posted June 30, 2009 Paranoia and jealousy are very common with LBD. Spouses accusing the other of having an affair, parents accusing children of stealing from them, etc. Been through all of that with my mom as well, esp. when she entered the nursing home - told any and all who would listen that she was there so my sister and I could take her lovely home and all of her money. (Truth was, she was over $100k in debt, had 3 leins on her house, etc.) She also threatened suicide, in fact did so for many months, and continues to do so on bad days. But she doesn't follow through. She has a perpetual open sore on her wrist where she slices at her skin to get attention but when she starts on it, they do a culture and she has a UTI - after her course of antibiotics, she stops and is good - or as good as is possible - again. She looks and acts " normal " and is excellent at show-timing, so much so that visitors of other residents hold the door open for her to follow them out of the building. She thinks she could live a normal independent life, but of course she can't (she'd caught her kitchen on fire just before she went into the NH, and calmly woke up her friend wayyy down the hall to tell him there was a fire - definitely not an urgent or appropriate response!), yet she's physically fine, and feels mentally fine, not remembering at all her periods of rage or inappropriate behavior after the fact. It is a cruel disease, and what you are describing is, sadly, fairly typical... His, Sherry s www.owly.net daughter of , (mis?)diagnosed with AD in 2005, diagnosed with LBD March 2008; in a NH, taking Aricept/Namenda, Seroquel, and Effexor for depression. Find me on Facebook - let's be friends . ----- Original Message ----- I asked him tonight if he ever had hallucinations, he was not sure what that was. I think I made him understand and he said no not that he knows of. I will call a neurologist tomorrow. Have been thinking of doing that. One of my real problems is I do not know if I should talk to him about this illness. I did once and he said he was going to kill himself before he got bad. Yes that sent up a single and I called the people for help the next day, only problem was they sent us to a marriage counselor. Great Hu? Right now this man still works and does most everything like he did before. He just has a bad day here and there. Seems they are on the week ends when he is off or I just don't see it because he is at work. There are a lot of changes in his personality. For one he use to be the most passive person you would ever meet, now at times (not always) he will argue over anything. Plus he has to know where I am at all time. (Never was he like this). He will come in and stand over my computer and try and read what I am doing. Again this is not something he would ever do. Just all these little things. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2009 Report Share Posted June 30, 2009 Carolyn, there are different dementias, from different causes. Lewy Body Dementia is very specific as to cause, and requires some different treatment than other dementias. Our los can be extremely sensitive to certain meds. Our los here have LBD. Vascular dementia would go along with stroke activity. I was wondering if you think there is are signs of LBD as well since you found our support group. Parkinsonism can be another symptom of LBD. Namenda is one of the cognitive enhancers recommended for LBD usually in conjunction with Aricept, Exelon or Razadyne. If you were just given the label dementia without a more specific diagnosis your doctor has done you a disservice. I would ask what kind of dementia to enable me to find out more and get the right support. Stay with us though if you think he has symptoms of LBD or if we can be of support to you. > > > > Subject: Re: Caring for my pops,,, > To: LBDcaregivers > Date: Monday, June 29, 2009, 5:34 PM > > > > > > > > > Thanks for the information Carolyn. Do you think there is dementia along with stroke effects? What diagnosing features does your husband have to determine LBD, and what " brain pill " is he taking? Fluctuation in cognitive ability, " show time " when needed for family, friends, doctors, as in putting on a good cognitive display for a short time, and hallucinations are some common LBD symptoms. You'll find much information in our links section to help you understand Lewy Body better. > Looking forward to hearing the story unfold more. > > > --- In > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2009 Report Share Posted June 30, 2009 Thank you for the in site. As I said the biggest problem here is his age. And most of the time I do not see what is going on. All of you are being very helpful and I thank you. I hope some day I will be in the position to give good advice to others as well. I watched a program on the computer from HBO and there was a man on that one the reminded me of my husband and that was when I figured I had better get with the program and learn all that I could. Subject: Re: Re: Caring for my pops,,, To: LBDcaregivers Date: Tuesday, June 30, 2009, 7:21 AM Paranoia and jealousy are very common with LBD. Spouses accusing the other of having an affair, parents accusing children of stealing from them, etc. Been through all of that with my mom as well, esp. when she entered the nursing home - told any and all who would listen that she was there so my sister and I could take her lovely home and all of her money. (Truth was, she was over $100k in debt, had 3 leins on her house, etc.) She also threatened suicide, in fact did so for many months, and continues to do so on bad days. But she doesn't follow through. She has a perpetual open sore on her wrist where she slices at her skin to get attention but when she starts on it, they do a culture and she has a UTI - after her course of antibiotics, she stops and is good - or as good as is possible - again. She looks and acts " normal " and is excellent at show-timing, so much so that visitors of other residents hold the door open for her to follow them out of the building. She thinks she could live a normal independent life, but of course she can't (she'd caught her kitchen on fire just before she went into the NH, and calmly woke up her friend wayyy down the hall to tell him there was a fire - definitely not an urgent or appropriate response!), yet she's physically fine, and feels mentally fine, not remembering at all her periods of rage or inappropriate behavior after the fact. It is a cruel disease, and what you are describing is, sadly, fairly typical... His, Sherry s www.owly.net daughter of , (mis?)diagnosed with AD in 2005, diagnosed with LBD March 2008; in a NH, taking Aricept/Namenda, Seroquel, and Effexor for depression. Find me on Facebook - let's be friends . ----- Original Message ----- From: " Carolyn La Fleur " <carolyn_lafleur@ yahoo.com> I asked him tonight if he ever had hallucinations, he was not sure what that was. I think I made him understand and he said no not that he knows of. I will call a neurologist tomorrow. Have been thinking of doing that. One of my real problems is I do not know if I should talk to him about this illness. I did once and he said he was going to kill himself before he got bad. Yes that sent up a single and I called the people for help the next day, only problem was they sent us to a marriage counselor. Great Hu? Right now this man still works and does most everything like he did before. He just has a bad day here and there. Seems they are on the week ends when he is off or I just don't see it because he is at work. There are a lot of changes in his personality. For one he use to be the most passive person you would ever meet, now at times (not always) he will argue over anything. Plus he has to know where I am at all time. (Never was he like this). He will come in and stand over my computer and try and read what I am doing. Again this is not something he would ever do. Just all these little things. Quote Link to comment Share on other sites More sharing options...
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