Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Hi everyone, I'm Kathy, the 60 year old wife of 83 year old who has advanced Parkinsonism (PD) with LBD. has had PD since at least 1991 and his dementia has increased markedly in the last several months. His PD symptoms are principally akenesia, which makes it difficult for him to walk and causes frequent falls, but he has little tremor. His LBD symptoms seem to wax and wain according to how well his PD medications are working. When they don't work well he has more confusion. They also get worse if he has a bad reaction to his PD meds. that means that if he has a good day he can change from reasonably oriented to confused 5 or 6 times during the day. If he has a bad day, he can be confused all day long. He takes 1.5 tablets of 100/25 Carbidopa Levodopa every 3 hours from 6 AM to 9 PM, He gets Comtan every other dose (9 AM, 12 AM and 9 PM), and he gets 50 MG of Seroquel at 6 AM, 3 PM and 9 PM. He takes 10 mg of Amytriptyline and Rozerem at bedtime. His dementia manifests as confusion about time and place, sometimes thinking there are multiple versions of me. It seems I get blamed for so called bad behavior, and another version often gets any compliments. He also sometimes believes there are multiple versions of our home, and that we are at the wrong one. Occasionally he hallucinates " wooden " or " zombie " people who are stiff and unresponsive. At one point he was able to understand these zombies did no exist; but not any more. I would be interested in knowing how typical these manifestations of dementia are of LBD, and if they come and go in patients that do not also suffer from PD. Regarding our situation: About 6 months ago my company allowed me to give up a full time management position as head of our customer services department to work as a half time manager of the order entry module of our enterprise business system. They have been kind enough to let me work to some degree from home, but do expect me to attend most meetings in person. This has provided great flexibility and I consider the organization has behaved generously toward me. However, the position really requires more than half-time, and I feel my authority and credibility have suffered, similar to a mommy-tracked individual. has had a number of falls and injuries lately. His condition worsened this fall when he failed to pass his drivers license test at renewal time (thank goodness) and his license was revoked. Our state allows 3 attempts to appeal the revocation, but requires passing an oral exam as the first step. He failed the first attempt, and although he would not admit it, found it too hard to study for future tests. After canceling the second attempt 3 times, I convinced him to postpone further attempts until he felt ready. His dementia worsened at that time, and his condition has not recovered to pre-testing levels. In February, both his internist and his neurologist tell us that he should no longer be home alone if I am at work. He is ready to fire both doctors and will probably try to quit seeing the neurologist. He quit one in 2002, after being hospitalized for a PD vacation (taken off meds and gradually returned to them to reduce toxicity). He is right that it nearly killed him, but it didn't and I think he would have mentally decompensated completely at that time without the treatment. He is unwilling to consider my quitting work entirely, or to hire HHAs to care for him and do light housekeeping while I go into work. Showing up for regular office hours would probably restore some credibility for me at work. I have been calling in to meetings since receiving the doctors' instructions, which my husband accepts, but I cannot do that much longer. I have a meeting with an Elder Services caregiver's counselor next Thursday to see if she can help me manage a solution. I think I would prefer to leave work to care for him, and have HHA provide 1 afternoon of respite/housecleaning per week. I will appreciate any insight or suggestions from the experience of group members. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Hi Kathy: Welcome to the place where no one wants to be, but will be a good place for you to get questions answered and vent if you feel the need. Although my husband is now deceased after having both AD and LBD, perhaps I can answer a couple of questions. The symptoms you are describing when he see two of you or two identical places or objects, is called Capgras Syndrome. It is common to LBD, as many caregivers have had this. My husband thought there were two of me and couldn't be conviced otherwise. I would show him a picture of us, and he would look at me, very curiously, and say " Well, it looks like you, but it's not. " He thought one was good and one was bad, too. I don't recall that he saw two identical objects, but sometimes they don't tell you everything. I am surprised from your list of medicines that he has not been placed on Aricept, Excelon, or Razadyne as well as Namenda with one of the three. These are commonly used with both AD and LBD and can stabilize for awhile although some report good improvement. I didn't notice improvement, but he was stable for 2-3 years before worsening. I would certainly ask the neurologist about these meds and get them started asap, as the earlier it is done in the illness, the better. I assume he had Parkinson's before the dementia. If dementia presents first, then the rigidity symptoms are generally referred to as Parkinsonism, which is what my husband had. He never had a tremor, either, but was very rigid with legs and arms practically unbendable when trying to help him dress, etc. It is good that your company is allowing you to do some of your work at home. Not many would be that helpful. I had to quit my part-time job to take care of my husband when he could no longer be left alone. If you can print off some of the materials about LBD from the LBDA site and the references on this one and take it to your employers (and doctors), they will have a better understanding of what you are going through. Lot of luck. Be ready for the roller coaster ride. June --- p108nky wrote: > Hi everyone, > > I'm Kathy, the 60 year old wife of 83 year old > who has > advanced Parkinsonism (PD) with LBD. has had > PD since at least > 1991 and his dementia has increased markedly in the > last several months. > > His PD symptoms are principally akenesia, which > makes it difficult for > him to walk and causes frequent falls, but he has > little tremor. > > His LBD symptoms seem to wax and wain according to > how well his PD > medications are working. When they don't work well > he has more > confusion. They also get worse if he has a bad > reaction to his PD > meds. that means that if he has a good day he can > change from > reasonably oriented to confused 5 or 6 times during > the day. If he has > a bad day, he can be confused all day long. > > He takes 1.5 tablets of 100/25 Carbidopa Levodopa > every 3 hours from 6 > AM to 9 PM, He gets Comtan every other dose (9 AM, > 12 AM and 9 PM), > and he gets 50 MG of Seroquel at 6 AM, 3 PM and 9 > PM. He takes 10 mg > of Amytriptyline and Rozerem at bedtime. > > His dementia manifests as confusion about time and > place, sometimes > thinking there are multiple versions of me. It seems > I get blamed for > so called bad behavior, and another version often > gets any > compliments. He also sometimes believes there are > multiple versions of > our home, and that we are at the wrong one. > Occasionally he > hallucinates " wooden " or " zombie " people who are > stiff and > unresponsive. At one point he was able to understand > these zombies did > no exist; but not any more. > > I would be interested in knowing how typical these > manifestations of > dementia are of LBD, and if they come and go in > patients that do not > also suffer from PD. > > Regarding our situation: > > About 6 months ago my company allowed me to give up > a full time > management position as head of our customer services > department to > work as a half time manager of the order entry > module of our > enterprise business system. They have been kind > enough to let me work > to some degree from home, but do expect me to attend > most meetings in > person. This has provided great flexibility and I > consider the > organization has behaved generously toward me. > However, the position > really requires more than half-time, and I feel my > authority and > credibility have suffered, similar to a > mommy-tracked individual. > > has had a number of falls and injuries > lately. His condition > worsened this fall when he failed to pass his > drivers license test at > renewal time (thank goodness) and his license was > revoked. Our state > allows 3 attempts to appeal the revocation, but > requires passing an > oral exam as the first step. He failed the first > attempt, and although > he would not admit it, found it too hard to study > for future tests. > After canceling the second attempt 3 times, I > convinced him to > postpone further attempts until he felt ready. His > dementia worsened > at that time, and his condition has not recovered to > pre-testing levels. > > In February, both his internist and his neurologist > tell us that he > should no longer be home alone if I am at work. He > is ready to fire > both doctors and will probably try to quit seeing > the neurologist. He > quit one in 2002, after being hospitalized for a PD > vacation (taken > off meds and gradually returned to them to reduce > toxicity). He is > right that it nearly killed him, but it didn't and I > think he would > have mentally decompensated completely at that time > without the treatment. > > He is unwilling to consider my quitting work > entirely, or to hire HHAs > to care for him and do light housekeeping while I go > into work. > Showing up for regular office hours would probably > restore some > credibility for me at work. I have been calling in > to meetings since > receiving the doctors' instructions, which my > husband accepts, but I > cannot do that much longer. I have a meeting with an > Elder Services > caregiver's counselor next Thursday to see if she > can help me manage a > solution. > > I think I would prefer to leave work to care for > him, and have HHA > provide 1 afternoon of respite/housecleaning per > week. > > I will appreciate any insight or suggestions from > the experience of > group members. > > Kathy > > > > > > June Wife of Darrell, dx'd Alzheimer's in 1999, Aricept started, added Celexa 2003 for depression; probable dx of LBD 2006; died at age 75 in November 2006. Autopsy confirmed LBD and AD. ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 Imogene, So sorry Don fell and glad he didn't do major damage. The mattress on the floor will help a whole lot. Hope he makes it through the night with no other falls! Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Self Introduction Hi Kathy, welcome! Great introduction. You have described my husband a great deal. LBD acts the way you described. My Don has a very slow walk, but he doesn't have true Parkinson's. What Don has is called Parkinsonism. That has come on for him after getting LBD. I understand that Parkinson's medications can interfere very much so with LBD. Don also had hallucinations right up front. Today he said, " You can't see those animals can you? " I asked, " What animals, the cats and squirrels? " He told me, " They are playing up a storm. " I laughed with him, and told him, " I am glad you can see things that were playful and fun. At least they are happy and not bad. Enjoy " Oh my goodness! My Don just came in here and I asked him what was wrong. He fell out of bed! Tomorrow the mattress goes on the floor. I have never seen a bed as high as his. I put a heavy quilted bedspread by his bed in case he falls again tonight. He wouldn't let me make changes tonight. He is all bruised and scraped, but it didn't break a hip. I am just about beside my self. I just bought him the extra long bed because he is tall, and when they set it up it is just about as high as it is long. I have been worried about it in the back of my mind, but just didn't realize he could fall out so soon. I will talk with you another time, its' getting late, and I am hanging in here to get through the mail. But, we will continue as we do here with everyone. Others will have loads of help for you. Love a bunch, Imogene Caregiver for my true Texas Gentleman Husband of 37 years. First diagnosed with Alzheimer's by a Neurologist OCT, 2005. But, on May 2, 2006 Dr. Schillerstrom, Geriatric/Psychiatrist diagnosed LBD with Parkinsonism. My precious husband, Don, is taking Zoloft and Razadyne. A happy personality is contagious. Infect someone today. In a message dated 3/2/2008 8:20:44 PM Central Standard Time, kathymjacobs@... writes: Hi everyone, I'm Kathy, the 60 year old wife of 83 year old who has advanced Parkinsonism (PD) with LBD. has had PD since at least 1991 and his dementia has increased markedly in the last several months. His PD symptoms are principally akenesia, which makes it difficult for him to walk and causes frequent falls, but he has little tremor. His LBD symptoms seem to wax and wain according to how well his PD medications are working. When they don't work well he has more confusion. They also get worse if he has a bad reaction to his PD meds. that means that if he has a good day he can change from reasonably oriented to confused 5 or 6 times during the day. If he has a bad day, he can be confused all day long. He takes 1.5 tablets of 100/25 Carbidopa Levodopa every 3 hours from 6 AM to 9 PM, He gets Comtan every other dose (9 AM, 12 AM and 9 PM), and he gets 50 MG of Seroquel at 6 AM, 3 PM and 9 PM. He takes 10 mg of Amytriptyline and Rozerem at bedtime. His dementia manifests as confusion about time and place, sometimes thinking there are multiple versions of me. It seems I get blamed for so called bad behavior, and another version often gets any compliments. He also sometimes believes there are multiple versions of our home, and that we are at the wrong one. Occasionally he hallucinates " wooden " or " zombie " people who are stiff and unresponsive. At one point he was able to understand these zombies did no exist; but not any more. I would be interested in knowing how typical these manifestations of dementia are of LBD, and if they come and go in patients that do not also suffer from PD. Regarding our situation: About 6 months ago my company allowed me to give up a full time management position as head of our customer services department to work as a half time manager of the order entry module of our enterprise business system. They have been kind enough to let me work to some degree from home, but do expect me to attend most meetings in person. This has provided great flexibility and I consider the organization has behaved generously toward me. However, the position really requires more than half-time, and I feel my authority and credibility have suffered, similar to a mommy-tracked individual. has had a number of falls and injuries lately. His condition worsened this fall when he failed to pass his drivers license test at renewal time (thank goodness) and his license was revoked. Our state allows 3 attempts to appeal the revocation, but requires passing an oral exam as the first step. He failed the first attempt, and although he would not admit it, found it too hard to study for future tests. After canceling the second attempt 3 times, I convinced him to postpone further attempts until he felt ready. His dementia worsened at that time, and his condition has not recovered to pre-testing levels. In February, both his internist and his neurologist tell us that he should no longer be home alone if I am at work. He is ready to fire both doctors and will probably try to quit seeing the neurologist. He quit one in 2002, after being hospitalized for a PD vacation (taken off meds and gradually returned to them to reduce toxicity). He is right that it nearly killed him, but it didn't and I think he would have mentally decompensated completely at that time without the treatment. He is unwilling to consider my quitting work entirely, or to hire HHAs to care for him and do light housekeeping while I go into work. Showing up for regular office hours would probably restore some credibility for me at work. I have been calling in to meetings since receiving the doctors' instructions, which my husband accepts, but I cannot do that much longer. I have a meeting with an Elder Services caregiver's counselor next Thursday to see if she can help me manage a solution. I think I would prefer to leave work to care for him, and have HHA provide 1 afternoon of respite/housecleaning per week. I will appreciate any insight or suggestions from the experience of group members. Kathy Welcome to LBDcaregivers. **************Ideas to please picky eaters. Watch video on AOL Living. (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/ 2050827?NCID=aolcmp00300000002598) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 > " snip ... LBD acts the way you described. > > My Don has a very slow walk, but he doesn't have true Parkinson's. What Don > has is called Parkinsonism. That has come on for him after getting LBD. > > I understand that Parkinson's medications can interfere very much so with > LBD. > snip ... > Oh my goodness! My Don just came in here and I asked him what was wrong. He > fell out of bed! Tomorrow the mattress goes on the floor. snip ... " Imogene, Thank you for your reply. some of my husband's doctors say Parkinson's disease, others Parkinsonism. I think the latter is more likely. Your posting is so characteristic of our lives. I can't tell you how many times I've had to finish an email to family with 'Oops, got to go & take care, has just ... " . I hope having a mattress on the floor will help without tripping him up. Does he get up at night when you are asleep? Lately I've been so tired I haven't always waked when he gets up. I put a chain on the door because I have been finding the front door wide open when I get up. Fortunately the chain (at the bottom of the door) has thwarted him so far. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 <snip> This to me would be a start, but then, I am not the doctor! You need an LBD aware doctor to put the right cocktail in place for your husband. <snip> Kathy - what state are you in? Maybe there's already a Lewy-savvy doctor in my database that I'm working on... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 Yes, Kathy, Don gets up at night. The other night he " saw " two cowboys come down from our attic through the attic hatch door. He was up with them, and must have been for a while because he came to my bed half frozen. He shook very hard for a while and I snuggled to him to help him get warm. Our Temp. had gone up into the high 80's but that night it dropped to 30. We had no heat on. I thought I would turn it on when I got up during the night, but it didn't happen. And, when Don is confused he doesn't turn it on, nor ring my chime to beckon me, nor even turn on his electric blanket. I will be getting something to automatically summon me when he gets up, pretty soon. I have put Don's box springs and mattress on the floor. It is not too low, yet low enough to keep him from hurting himself too much, I hope. We installed a door with burglar bars, so that I can keep Don in when he gets up, and keep burglars out. He has a key right now, but he doesn't try to get out. I also have the gate locked for the back yard. I watch for signs of wandering. When the tile floor was being laid, we had to stay in a motel. He was very confused while we were there, and did wander off. It scared him. He finally found his way back. I was just heading out to look for him. Sometimes he can't use a key at all. It won't be long before I put a fake key on his chain. He can't use the micro wave, the telephone, nor operate the TV remote. He has accidents in his underwear, but so far he still cleans himself up, Sort of. He won't wear protective underwear yet. I wash his clothes. I have given him a bath a number of times already. He doesn't remember to wash certain areas, and will come out as dirty as he was when he went in. Have you seen the Five Phases of LBD that are listed in the File section on our home page? It is not a scientific study, but was put together by caregivers. It does give us a general idea of where our Love ones are in this terrible illness. One thing I have learned is not to ask my precious man to fix or do anything. I had asked him to unplug the phone. It was a nice fixture in the wall that could accommodate two phones. He didn't release the little side switch that holds the plug into the wall. He couldn't unplug it so he tore the whole box out of the wall. He has broken several things like that. My son repaired it. I have a lot of mail to read and it's already getting late. Thanks for writing Kathy, Love a lot, it does me good. Imogene Caregiver for my true Texas Gentleman Husband of 37 years. First diagnosed with Alzheimer's by a Neurologist OCT, 2005. But, on May 2, 2006 Dr. Schillerstrom, Geriatric/Psychiatrist diagnosed LBD with Parkinsonism. My precious husband, Don, is taking Zoloft and Razadyne. A happy personality is contagious. Infect someone today. In a message dated 3/3/2008 9:39:17 AM Central Standard Time, kathymjacobs@... writes: Imogene, Thank you for your reply. some of my husband's doctors say Parkinson's disease, others Parkinsonism. I think the latter is more likely. Your posting is so characteristic of our lives. I can't tell you how many times I've had to finish an email to family with 'Oops, got to go & take care, has just ... " . I hope having a mattress on the floor will help without tripping him up. Does he get up at night when you are asleep? Lately I've been so tired I haven't always waked when he gets up. I put a chain on the door because I have been finding the front door wide open when I get up. Fortunately the chain (at the bottom of the door) has thwarted him so far. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Welcome Pam, Glad you found us and hope we eventually can answer some questions for you. If you go down to the bottom of this message you will will find some words in blue letters. One is " lists " and another is " links " and has put lots of info that is important to all of us there. You may want to peruse as you find time. When this group started, we had no answers and struggled through this as you are doing. It is why many of us stay and try to help those who came after. Many MDs don't have the answers and many just call it Alzheimers, but it isn't. Hugs and welcome. Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Self introduction Hi my name is Pam and I am a caregiver to my mother-in-law. She has Lewy Body Dementia. I came here to see if I can find out what to expect and so far I have learned alot. There is so much to absorb. WOW. I am so happy there is a site like this for us to go to for support and be able to ask questions. Thank you so much!!!! Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Lorraine, You can never talk to much here. If you have something to say, so do 10 others who may never ask. Please join us and say what ever you want. We have many member who never participate and who just read and wait for answers. If you ask your question or write an email, you may be surprised at how helpful it is to someone else. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Self introduction My name is Lorraine and have been lurking and occasionally commenting on this forum for months. I asked the question about VA medical experiences. I have debated within myself about being more vocal - because I think I might just do that - talk too much. I am 57 and my husband is soon to be 57. Married 37 1/2 years. I quit my job in Dec. 2006 to begin 24/7 working as his caregiver. He was diagnosed in 2002 with Parkinson's. He has dementia and I really do not have a LBD diagnosis but he has many symptoms of it. He has Capgras and says that I have 2 or 3 " sisters " . He can get so engrossed in TV to the point that it is part of his life. I am one of those who cannot ask him to fix anything (he used to fix everything - even overhaul our car engines). As mentioned in a previous post I am going to try the VA medical system out so I will not go into saying much about his neurologist. I am in a similar situation as Kathy meds wise. My husband takes a lot of Sinemet and Comtan. I have told him in his lucid moments that the Sinemet may cause some of his confusion and he wants his mobility as much as possible. I do give him generic zanaflex - muscle relaxant, PRN- the one thing that helped with pain in his limbs. Also 25 mg of seroquel at night. I really do not have a question at this time. I do want to say that I feel for Carol and Emma and others at this time in their lives. Lorraine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Thank you so much. I have been going into some of the links and am finding them very helpful. Again Thank you Pam Self introduction Hi my name is Pam and I am a caregiver to my mother-in-law. She has Lewy Body Dementia. I came here to see if I can find out what to expect and so far I have learned alot. There is so much to absorb. WOW. I am so happy there is a site like this for us to go to for support and be able to ask questions. Thank you so much!!!! Pam Quote Link to comment Share on other sites More sharing options...
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