Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 Hi Marsha, Trust me, venting is very healthy and we all do it. About stages, stages only help very little As my mothers doctor says, each and every patient responds different to medication, and rate of deterioration and no two people are alike. I was as you wanted to be prepared of what is around the corner, but now that my mother is with me 1 1/2 year and each day is totally different i understand that what the doctor says is correct everyone is different and they can change from stage to stage at a different pace. Looking for stages can drive you crazy and does not help our loveones or us. When i look back, my mother has had LBD for 4 years according to doctors, but when i look back i can see clearly she had this 10 years prior we just did not understand the meaning of many warning signs we saw. first sign, depression, second sign, parkinson, third sign, repeating, forgetting to balance bank book, and also, you would talk to her and she would answer something that had nothing to do with the subject, and looking back, i figured her hearing was bad, but now i see clearly it was dementia taking over. My Mothers doctor says, a person with dementia can live from 20 years to 4. No one can guess and to who lives what amount of time. I am in total SHOCK, when i compare my blood work to my mother's blood work, her blood test come out in flying colors, my blood work comes back as OUT OF RANGE...HIGH...on EVERYTHING. We eat the same food and take vitamins " go figure " . NOW i do not worry about stages any longer I did get her diapers, i got gloves and i got all the supply doctor warned me that one of the first things to go, is ability to go to the bathroom and i am ready for that phase now, but other than that, you have to take one day at a time, and find a way to vent in a healthy way and not forget to take care of your healthy at the same time as your loved one and for me that has been the hardest part i was neglecting my self to focus 100 percent on my mother, but now i see, how important that i have to be healthy to be able to make sure i am there for her. The statistics on caregivers are not good, so please take care of yourself so that u can be around for her. Write us as often as you need, we are very caring people and really want to help as much as we can. Maggie/caregiver to mom 78 years old/California --- stimtimminss wrote: > Hi Marsha, > Everything you have written makes sense to those of > us here. You have come to the right > place for sharing and understanding. I feel so > deeply for the young age of your mother's > onset with LBD and what you describe. You will > evolve into a very informed and wise > caregiver. I wish I had had this forum so much > earlier in my mother's journey. Welcome! > > , Oakville Ont. > > Mother, age 92, died Aug. 12/06 after 13 year > decline from PDD > > > > > > Hello > > My name is Marsha, my mother has LBD. She > was miss diagnosed about 4 or 4 1/2 > yrs ago with Alzheimer's. In the past 2 years she > has really gone down hill. A year and a > half ago we changed her doctor because she was just > getting so much worse and my dad > and I thought that there was something else wrong > with her. We didn't think she had > Alzheimer's. She had more symptoms of Parkinson's > disease. My mother is now 54 yrs old. > > Once she had a new doctor he studied her > file, talked with her, talked with my dad > and I and done some testing. He agreed that this > was more than just Alzheimer's and he > lowered her dosage of the Aircept. And make us a > follow up appointment. > > Within the next 3 months her condition worsened. > She started shuffling her feet, > having dissolution's and her hands with had been > shaking for over a year or so was now to > the point that she couldn't hold anything without > dropping it, couldn't open a coke bottle. > She had also gotten to the point that she couldn't > remember how to cook, use the washer, > and was unable to read directions and even write her > name. > > In April of 2006 we carried her to the > doctor, she was extremely week. They > admitted her into the hospital said that she was > dehydrated and her calcium level was > high. While in the hospital she started having > hallucinations. Once she went home from > the hospital a few days later her hallucinations > seemed to stop for a little while. > > Within a month the hallucinations started > again, she was back to a gate walk and > had a slur when she talked. On June 5, 2006 we > carried her to the doctor he admitted her > to the hospital her calcium level was high again and > she was dehydrated again. She > couldn't hardly talk, head just kinda hung down all > the time. Once in the hospital they > started her on lacects and the doctor just wanted to > watch her and monitor her for a day > or so. Daddy stayed with her the first night and > when I we up on Tuesday she seemed alot > better. I stayed with her that night so daddy could > go home and rest. Well our night > started off pretty good. But as the night went on > she couldn't sleep, her hallucinations > were terrible, she got to the point that she > couldn't get up to go to the bathroom on her > own. Couldn't see the toilet when we helped her to > the bathroom. Couldn't see the toilet > paper even when you put it in her hand. By morning > she was unable to feed herself, I > would put a straw in > > her mouth trying to get her to drink and I would > have to tell her to suck on the straw. I > had to demonstrate how to do that. She had lost all > knowledge of how to eat, drink, suck > and even swallow. At 7:30 am they brought breakfast > in an while I was feeding her she > forgot who I was. She started yelling for the nurse > to get me out of her room. The nurse > told her that I was her daughter and that it was ok. > She told the nurse that I was not her > daughter and to get me out of there. By then I had > just broke down I couldn't stand it, I > stood outside of her door the nurse stayed in there > with her so she wouldn't fall and hurt > herself . She kept trying to get out of bed to go > home and she couldn't even walk. I called > my step-daughter , called my dad, and my sisters and > my brother. I was so upset and > thought that we were close to the end. It was a > terrible night . My step-daughter got there > first she working just 30 minutes from the hospital. > When my step-daughter walk in the > room > > mother knew who she was. She told her to make me > get out her room. I stayed outside > her room and waited on my daddy when he got there > she calmed down just a little when > the doctor got there he gave her an antisicotic drug > and she started trying to dose a little . > By 3:00 that Wed. afternoon she finally went to > sleep and daddy stayed with her that night. > The following day the doctor told us that mother did > not have Alzheimer's that she had > LBD and a parathyroid which was producing too much > calcium in her body. He wanted her > to see a endocrinologist for the parathyroid and he > also changed her medication. He > started her on exolon and serquol. > > After seeing the endocrinologist and > running some test over the next few months > he done surgery on November the 9th. Went back in > December and she was alot better. > In January we took her back to her regular doctor he > agreed she was alot better. She was > able to walk, no shuffle or gate walk, she could > talk no slur, she was back to feeding > herself, she still didn't have a control of her > hands but she was soooo much better. > > It is now April 26th 2007. We carried > mother back to the doctor 2 days ago I have > been talking to her doctor over the past month > because mothers hallucinations have > started getting bad again, She wakes up during the > night and don't know where she is, She > see's things in the bed that aren't there she thinks > that daddy is making her sleep in a > different house every night. They live in the same > house that they build together when > they first got married. Its the only house they have > ever lived in. She tells everyone that > " that is not her house, she doesn't know who's house > it is but it's not hers " . " She wants to > go home " . > > I have 2 sisters and a brother my brother is the > youngest, he is 26 yrs old. She wakes > up during the night tells daddy to check on the > baby, or to check on the kids. She has > many episodes where she thinks we are all still > babies. She see's babies, and looks for > babies. > > For several weeks she walked around looking for > glass in her hands. She told everyone > that she had some green glass in her hands and that > none of us would get it out. (There > was no glass). She see's people out the window in > her back yard and she takes off after > them. She can't read anymore, can't write her own > name, she can't cook, do any household > duties, she can't dress herself anymore. She does > take a shower on her own but daddy > usually has to help her wash her hair. For the past > year she is never left alone, someone is > always with her. If she wants to go to town , she > goes but is never left in the car alone > afraid she might get out and wonder off. When you > take her in the grocery store or Wal- > Mart you have to watch her closely or she will > wonder off from you there. > > When we seen the doctor this week he upped > her dosage of Seroquel to 150mg in > the morning and 150mg at night. If she isn't > sleeping better and is still having frequent > hallucinations he told me to give him a call back. > > I had many questions for the doctor that he > will never answer in front of mother, so > daddy took her out and I stayed behind to talk to > him . I asked him if he could give her > something for anxiety because she gets upset when > she has these hallucinations. And she > worries about what she see's and the fact that none > of us see it. He told me no that he > really didn't want to give her anything else right > now . The seroquel was working ok and > he upped her dosage and we would just wait to see > how she does. > > Then I asked him if this disease was > hereditary? He said he couldn't answer that and > be 100% because there isn't alot of medical info out > there. But he did believe that my > brother and 2 sisters and myself were 3 times more > likely to develop LBD than my kids or > my grand kids. > > Then I asked if LBD had stages like > Alzheimer's disease? If so what stage was my > mother in? I wanted to know what was ahead down the > road? I didn't want to sound like a > terrible daughter for asking but I really believe > that we should know whats gonna happen > or could happen. Well he told me that he believed > that mother was in the sever stages of > this disease and that he believed that within the > next year to 2 yrs that she would be > completely bed ridden and dependent on us for > everything. He said that she would > become unable to get out of bed, to sit up, she > wouldn't === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 Marsha: So sorry to see that you have a reason to find this group, but you will be glad you have some place to get information, vent your frustrations, and compare your mother to others (although they can't be compared completely). Your mother was extremely young to have developed this horrible disease. My husband was dx'd with AD in 1999 at the age of 69, which is considered plenty young. After about 4 years on Aricept, he was losing ground, and in March of 2005 suffered a broken shoulder, which caused rapid deterioration, mostly from the use of heavy-duty pain pills and antipsychotic (neuroleptic) drugs, I believe. He was mobile and able to do things at home throughout 2005, with directions, but in November fell and broke his right wrist, which rendered him pretty helpless as far as dressing, eating, personal care, etc., because he couldn't understand how to use his other hand and would tryu to do everything with the broken wrist/hand/arm; then would complain that it hurt. Surprise, surprise!! But he just couldn't understand not to use it. After a short stint in an acute care nursing home to evaluate and adjust meds, he came home worse than ever and had developed a severe UTI, although I did not know what was wrong. He became so belligerant, angry, hitting, falling cursing, etc., that I finally had to take him to the ER, and they admitted him to the hospital for three days. After that, they told me I wouldn't be able to take care of him, so I had to place him in a NH. He improved briefly, but became really bad again after the antibiotics for the UTI were finished. He was there from Feb to Nov with three times in the hospital, once for med evaluation and twice for severe dehydration, aspiration pneumonia, bedsores, UTIs, and declined very rapidly from about July-August on. He died in November of 2006. It is generally thought that the earlier that LBD is developed, the faster it goes. I tend to think that the use of wrong medications may be what speeds the disease up, as that's what appeared to happen in our case. My husband's father had Parkinson's with eventual dementia; two brothers and two sisters had dementia. In addition, his mother and father married brother and sister, and five of those family members had AD or some sort of dementia. We became involved in a family DNA study early in 2005 through the University of Indiana, who sent representatives to our area to take blood samples, medical histories, and give extensive mental tests (for memory). They will provide autopsy of brain tissue free of charge; and to date they have done the autopsies on a sister and brother, both AD, and my husband, who had both AD and LBD. You might want to consider this, as the more family research that is done, the more likely there may be a chance for either a preventive or a cure. They do not give anyone the results of these tests; they are for research purposes only. However, you do get a copy of the autopsy with the results. As far as you and your siblings go, there is some speculation that LBD is not as hereditary as LBD is and that LBD may be linked to some kind of chemical exposure, particularly agricultural chemicals. Of course, they don't know for sure, but my husband was exposed to agricultural chemicals for some time and then chemicals he used in stripping and refinishing furniture. Because he had both, our children, grandchildren, and great-grandchildren may develop AD, which worries both them and me considerably. I hope to get the word out about this disease to anybody who will listen. Again, welcome, feel free to ask all the questions you need to. Your father will probably suffer a lot from this caregiving routine due to his own health problems, so watch him carefully. It can creep up on you. I hope all your family members can get on the same page as far as your mother goes, as you all need to support one another. Good luck. --- stimtimminss wrote: > Hi Marsha, > Everything you have written makes sense to those of > us here. You have come to the right > place for sharing and understanding. I feel so > deeply for the young age of your mother's > onset with LBD and what you describe. You will > evolve into a very informed and wise > caregiver. I wish I had had this forum so much > earlier in my mother's journey. Welcome! > > , Oakville Ont. > > Mother, age 92, died Aug. 12/06 after 13 year > decline from PDD > > > > > > Hello > > My name is Marsha, my mother has LBD. She > was miss diagnosed about 4 or 4 1/2 > yrs ago with Alzheimer's. In the past 2 years she > has really gone down hill. A year and a > half ago we changed her doctor because she was just > getting so much worse and my dad > and I thought that there was something else wrong > with her. We didn't think she had > Alzheimer's. She had more symptoms of Parkinson's > disease. My mother is now 54 yrs old. > > Once she had a new doctor he studied her > file, talked with her, talked with my dad > and I and done some testing. He agreed that this > was more than just Alzheimer's and he > lowered her dosage of the Aircept. And make us a > follow up appointment. > > Within the next 3 months her condition worsened. > She started shuffling her feet, > having dissolution's and her hands with had been > shaking for over a year or so was now to > the point that she couldn't hold anything without > dropping it, couldn't open a coke bottle. > She had also gotten to the point that she couldn't > remember how to cook, use the washer, > and was unable to read directions and even write her > name. > > In April of 2006 we carried her to the > doctor, she was extremely week. They > admitted her into the hospital said that she was > dehydrated and her calcium level was > high. While in the hospital she started having > hallucinations. Once she went home from > the hospital a few days later her hallucinations > seemed to stop for a little while. > > Within a month the hallucinations started > again, she was back to a gate walk and > had a slur when she talked. On June 5, 2006 we > carried her to the doctor he admitted her > to the hospital her calcium level was high again and > she was dehydrated again. She > couldn't hardly talk, head just kinda hung down all > the time. Once in the hospital they > started her on lacects and the doctor just wanted to > watch her and monitor her for a day > or so. Daddy stayed with her the first night and > when I we up on Tuesday she seemed alot > better. I stayed with her that night so daddy could > go home and rest. Well our night > started off pretty good. But as the night went on > she couldn't sleep, her hallucinations > were terrible, she got to the point that she > couldn't get up to go to the bathroom on her > own. Couldn't see the toilet when we helped her to > the bathroom. Couldn't see the toilet > paper even when you put it in her hand. By morning > she was unable to feed herself, I > would put a straw in > > her mouth trying to get her to drink and I would > have to tell her to suck on the straw. I > had to demonstrate how to do that. She had lost all > knowledge of how to eat, drink, suck > and even swallow. At 7:30 am they brought breakfast > in an while I was feeding her she > forgot who I was. She started yelling for the nurse > to get me out of her room. The nurse > told her that I was her daughter and that it was ok. > She told the nurse that I was not her > daughter and to get me out of there. By then I had > just broke down I couldn't stand it, I > stood outside of her door the nurse stayed in there > with her so she wouldn't fall and hurt > herself . She kept trying to get out of bed to go > home and she couldn't even walk. I called > my step-daughter , called my dad, and my sisters and > my brother. I was so upset and > thought that we were close to the end. It was a > terrible night . My step-daughter got there > first she working just 30 minutes from the hospital. > When my step-daughter walk in the > room > > mother knew who she was. She told her to make me > get out her room. I stayed outside > her room and waited on my daddy when he got there > she calmed down just a little when > the doctor got there he gave her an antisicotic drug > and she started trying to dose a little . > By 3:00 that Wed. afternoon she finally went to > sleep and daddy stayed with her that night. > The following day the doctor told us that mother did > not have Alzheimer's that she had > LBD and a parathyroid which was producing too much > calcium in her body. He wanted her > to see a endocrinologist for the parathyroid and he > also changed her medication. He > started her on exolon and serquol. > > After seeing the endocrinologist and > running some test over the next few months > he done surgery on November the 9th. Went back in > December and she was alot better. > In January we took her back to her regular doctor he > agreed she was alot better. She was > able to walk, no shuffle or gate walk, she could > talk no slur, she was back to feeding > herself, she still didn't have a control of her > hands but she was soooo much better. > > It is now April 26th 2007. We carried > mother back to the doctor 2 days ago I have > been talking to her doctor over the past month > because mothers hallucinations have > started getting bad again, She wakes up during the > night and don't know where she is, She > see's things in the bed that aren't there she thinks > that daddy is making her sleep in a > different house every night. They live in the same > house that they build together when > they first got married. Its the only house they have > ever lived in. She tells everyone that > " that is not her house, she doesn't know who's house > it is but it's not hers " . " She wants to > go home " . > > I have 2 sisters and a brother my brother is the > youngest, he is 26 yrs old. She wakes > up during the night tells daddy to check on the > baby, or to check on the kids. She has > many episodes where she thinks we are all still > babies. She see's babies, and looks for > babies. > > For several weeks she walked around looking for > glass in her hands. She told everyone > that she had some green glass in her hands and that > none of us would get it out. (There > was no glass). She see's people out the window in > her back yard and she takes off after > them. She can't read anymore, can't write her own > name, she can't cook, do any household > duties, she can't dress herself anymore. She does > take a shower on her own but daddy > usually has to help her wash her hair. For the past > year she is never left alone, someone is > always with her. If she wants to go to town , she > goes but is never left in the car alone > afraid she might get out and wonder off. When you > take her in the grocery store or Wal- > Mart you have to watch her closely or she will > wonder off from you there. > > When we seen the doctor this week he upped > her dosage of Seroquel to 150mg in > the morning and 150mg at night. If she isn't > sleeping better and is still having frequent > hallucinations he told me to give him a call back. > > I had many questions for the doctor that he > will never answer in front of mother, so > daddy took her out and I stayed behind to talk to > him . I asked him if he could give her > something for anxiety because she gets upset when > she has these hallucinations. And she > worries about what she see's and the fact that none > of us see it. He told me no that he > really didn't want to give her anything else right > now . The seroquel was working ok and > he upped her dosage and we would just wait to see > how she does. > > Then I asked him if this disease was > hereditary? He said he couldn't answer that and > be 100% because there isn't alot of medical info out > there. But he did believe that my > brother and 2 sisters and myself were 3 times more > likely to develop LBD than my kids or > my grand kids. > > Then I asked if LBD had stages like > Alzheimer's disease? If so what stage was my > mother in? I wanted to know what was ahead down the > road? I didn't want to sound like a > terrible daughter for asking but I really believe > that we should know whats gonna happen > or could happen. Well he told me that he believed > that mother was in the sever stages of > this disease and that he believed that within the > next year to 2 yrs that she would be > completely bed ridden and dependent on us for > everything. He said that she would > become unable to get out of bed, to sit up, she > wouldn't === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 Maggie, I didn't have Mom on many meds except for Blood pressure and thyroid and very small amount of anti-anxiety meds. She didn't have a problem with the bathroom until they wouldn't take her while she was in the nh. She would still wait until I got there and go with no problem. I keep telling the Aids, " if you take her you will have less problem " . They finally believed me. She was put in Depends in the hospital and labeled and they just keep her in them because it was easier for them. It was only the last month in the nh when she was so sick that she finally needed them as she couldn't get out of bed and walk very easily. I say this so you won't be surprised if your Mom doesn't need them. Mom was 84 when she finally came to live with me. She had dementia a long time before that in her own home. She had less of the PD symptoms than the LBD and AD symptoms. 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: Re: Mother with LBD Hi Marsha, Trust me, venting is very healthy and we all do it. About stages, stages only help very little As my mothers doctor says, each and every patient responds different to medication, and rate of deterioration and no two people are alike. I was as you wanted to be prepared of what is around the corner, but now that my mother is with me 1 1/2 year and each day is totally different i understand that what the doctor says is correct everyone is different and they can change from stage to stage at a different pace. Looking for stages can drive you crazy and does not help our loveones or us. When i look back, my mother has had LBD for 4 years according to doctors, but when i look back i can see clearly she had this 10 years prior we just did not understand the meaning of many warning signs we saw. first sign, depression, second sign, parkinson, third sign, repeating, forgetting to balance bank book, and also, you would talk to her and she would answer something that had nothing to do with the subject, and looking back, i figured her hearing was bad, but now i see clearly it was dementia taking over. My Mothers doctor says, a person with dementia can live from 20 years to 4. No one can guess and to who lives what amount of time. I am in total SHOCK, when i compare my blood work to my mother's blood work, her blood test come out in flying colors, my blood work comes back as OUT OF RANGE...HIGH...on EVERYTHING. We eat the same food and take vitamins " go figure " . NOW i do not worry about stages any longer I did get her diapers, i got gloves and i got all the supply doctor warned me that one of the first things to go, is ability to go to the bathroom and i am ready for that phase now, but other than that, you have to take one day at a time, and find a way to vent in a healthy way and not forget to take care of your healthy at the same time as your loved one and for me that has been the hardest part i was neglecting my self to focus 100 percent on my mother, but now i see, how important that i have to be healthy to be able to make sure i am there for her. The statistics on caregivers are not good, so please take care of yourself so that u can be around for her. Write us as often as you need, we are very caring people and really want to help as much as we can. Maggie/caregiver to mom 78 years old/California --- stimtimminss wrote: > Hi Marsha, > Everything you have written makes sense to those of > us here. You have come to the right > place for sharing and understanding. I feel so > deeply for the young age of your mother's > onset with LBD and what you describe. You will > evolve into a very informed and wise > caregiver. I wish I had had this forum so much > earlier in my mother's journey. Welcome! > > , Oakville Ont. > > Mother, age 92, died Aug. 12/06 after 13 year > decline from PDD > > > > > > Hello > > My name is Marsha, my mother has LBD. She > was miss diagnosed about 4 or 4 1/2 > yrs ago with Alzheimer's. In the past 2 years she > has really gone down hill. A year and a > half ago we changed her doctor because she was just > getting so much worse and my dad > and I thought that there was something else wrong > with her. We didn't think she had > Alzheimer's. She had more symptoms of Parkinson's > disease. My mother is now 54 yrs old. > > Once she had a new doctor he studied her > file, talked with her, talked with my dad > and I and done some testing. He agreed that this > was more than just Alzheimer's and he > lowered her dosage of the Aircept. And make us a > follow up appointment. > > Within the next 3 months her condition worsened. > She started shuffling her feet, > having dissolution's and her hands with had been > shaking for over a year or so was now to > the point that she couldn't hold anything without > dropping it, couldn't open a coke bottle. > She had also gotten to the point that she couldn't > remember how to cook, use the washer, > and was unable to read directions and even write her > name. > > In April of 2006 we carried her to the > doctor, she was extremely week. They > admitted her into the hospital said that she was > dehydrated and her calcium level was > high. While in the hospital she started having > hallucinations. Once she went home from > the hospital a few days later her hallucinations > seemed to stop for a little while. > > Within a month the hallucinations started > again, she was back to a gate walk and > had a slur when she talked. On June 5, 2006 we > carried her to the doctor he admitted her > to the hospital her calcium level was high again and > she was dehydrated again. She > couldn't hardly talk, head just kinda hung down all > the time. Once in the hospital they > started her on lacects and the doctor just wanted to > watch her and monitor her for a day > or so. Daddy stayed with her the first night and > when I we up on Tuesday she seemed alot > better. I stayed with her that night so daddy could > go home and rest. Well our night > started off pretty good. But as the night went on > she couldn't sleep, her hallucinations > were terrible, she got to the point that she > couldn't get up to go to the bathroom on her > own. Couldn't see the toilet when we helped her to > the bathroom. Couldn't see the toilet > paper even when you put it in her hand. By morning > she was unable to feed herself, I > would put a straw in > > her mouth trying to get her to drink and I would > have to tell her to suck on the straw. I > had to demonstrate how to do that. She had lost all > knowledge of how to eat, drink, suck > and even swallow. At 7:30 am they brought breakfast > in an while I was feeding her she > forgot who I was. She started yelling for the nurse > to get me out of her room. The nurse > told her that I was her daughter and that it was ok. > She told the nurse that I was not her > daughter and to get me out of there. By then I had > just broke down I couldn't stand it, I > stood outside of her door the nurse stayed in there > with her so she wouldn't fall and hurt > herself . She kept trying to get out of bed to go > home and she couldn't even walk. I called > my step-daughter , called my dad, and my sisters and > my brother. I was so upset and > thought that we were close to the end. It was a > terrible night . My step-daughter got there > first she working just 30 minutes from the hospital. > When my step-daughter walk in the > room > > mother knew who she was. She told her to make me > get out her room. I stayed outside > her room and waited on my daddy when he got there > she calmed down just a little when > the doctor got there he gave her an antisicotic drug > and she started trying to dose a little . > By 3:00 that Wed. afternoon she finally went to > sleep and daddy stayed with her that night. > The following day the doctor told us that mother did > not have Alzheimer's that she had > LBD and a parathyroid which was producing too much > calcium in her body. He wanted her > to see a endocrinologist for the parathyroid and he > also changed her medication. He > started her on exolon and serquol. > > After seeing the endocrinologist and > running some test over the next few months > he done surgery on November the 9th. Went back in > December and she was alot better. > In January we took her back to her regular doctor he > agreed she was alot better. She was > able to walk, no shuffle or gate walk, she could > talk no slur, she was back to feeding > herself, she still didn't have a control of her > hands but she was soooo much better. > > It is now April 26th 2007. We carried > mother back to the doctor 2 days ago I have > been talking to her doctor over the past month > because mothers hallucinations have > started getting bad again, She wakes up during the > night and don't know where she is, She > see's things in the bed that aren't there she thinks > that daddy is making her sleep in a > different house every night. They live in the same > house that they build together when > they first got married. Its the only house they have > ever lived in. She tells everyone that > " that is not her house, she doesn't know who's house > it is but it's not hers " . " She wants to > go home " . > > I have 2 sisters and a brother my brother is the > youngest, he is 26 yrs old. She wakes > up during the night tells daddy to check on the > baby, or to check on the kids. She has > many episodes where she thinks we are all still > babies. She see's babies, and looks for > babies. > > For several weeks she walked around looking for > glass in her hands. She told everyone > that she had some green glass in her hands and that > none of us would get it out. (There > was no glass). She see's people out the window in > her back yard and she takes off after > them. She can't read anymore, can't write her own > name, she can't cook, do any household > duties, she can't dress herself anymore. She does > take a shower on her own but daddy > usually has to help her wash her hair. For the past > year she is never left alone, someone is > always with her. If she wants to go to town , she > goes but is never left in the car alone > afraid she might get out and wonder off. When you > take her in the grocery store or Wal- > Mart you have to watch her closely or she will > wonder off from you there. > > When we seen the doctor this week he upped > her dosage of Seroquel to 150mg in > the morning and 150mg at night. If she isn't > sleeping better and is still having frequent > hallucinations he told me to give him a call back. > > I had many questions for the doctor that he > will never answer in front of mother, so > daddy took her out and I stayed behind to talk to > him . I asked him if he could give her > something for anxiety because she gets upset when > she has these hallucinations. And she > worries about what she see's and the fact that none > of us see it. He told me no that he > really didn't want to give her anything else right > now . The seroquel was working ok and > he upped her dosage and we would just wait to see > how she does. > > Then I asked him if this disease was > hereditary? He said he couldn't answer that and > be 100% because there isn't alot of medical info out > there. But he did believe that my > brother and 2 sisters and myself were 3 times more > likely to develop LBD than my kids or > my grand kids. > > Then I asked if LBD had stages like > Alzheimer's disease? If so what stage was my > mother in? I wanted to know what was ahead down the > road? I didn't want to sound like a > terrible daughter for asking but I really believe > that we should know whats gonna happen > or could happen. Well he told me that he believed > that mother was in the sever stages of > this disease and that he believed that within the > next year to 2 yrs that she would be > completely bed ridden and dependent on us for > everything. He said that she would > become unable to get out of bed, to sit up, she > wouldn't === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 , this is excellent information. Do you always keep copies of the emails you send? " " <octoryrose@yahoo .com> To Sent by: LBDcaregivers LBDcaregivers@yah cc oogroups.com Subject Re: Mother with LBD 04/28/2007 09:11 AM Please respond to LBDcaregivers@yah oogroups.com Marsha welcome to the group. I'm glad you found us. Every word of your post makes sense. <snip> She wakes up during the night and don't know where she is, [...] she thinks that daddy is making her sleep in a different house every night. <snip> That's called " Capgras's syndrome " -- read more here: http://en.wikipedia.org/wiki/Capgras_delusion <snip> When we seen the doctor this week he upped her dosage of Seroquel to 150mg in the morning and 150mg at night. <snip> Read more about suggested medications and its dosages here (by Dr. Bradley Boeve): http://www.lewybodydementia.org/Boevelink.php <snip> If she isn't sleeping better and is still having frequent hallucinations he told me to give him a call back.<snip> We recently had a Q & A session with Dr. Gomperts of Mass. General Hospital's Memory & Movement Disorders Unit. Hallucinations and sleeplessness were covered. Read the transcript here: http://health.groups.yahoo.com/group/LBDcaregivers/files/ And look in the folder marked: LBDA Lewy Body Dementia Association News <snip> Then I asked if LBD had stages like Alzheimer's disease? If so what stage was my mother in? <snip> It's true that everyone is not only different, but reacts to medications differently. However, an unscientific listing of phases was put together by caregivers - to read it go here: http://health.groups.yahoo.com/group/LBDcaregivers/files/ And look in the folder marked: LBD Phases List of Phases put together by the LBD Caring Spouses Group <snip> I was grateful for his honesty [...]<snip> I agree, you've found a good doctor and his honesty is certainly commended. We have a couple of useful documents that may be beneficial. There's a FAQ document here: http://health.groups.yahoo.com/group/LBDcaregivers/files/ And look in the folder marked: FAQ Top 10 Important Topics Related to LBD There's information of what to think about legally: http://health.groups.yahoo.com/group/LBDcaregivers/files/ The Business of Dementia.doc The 'legal' things you need to know about <snip> [...] but my other sister and my brother could help us out more than they do.<snip> Many of us has seen the same. I have one sister who did just as much as I did in the caring for our mom. I have one brother who dropped off the face of the earth. He couldn't handle it. It's unfortunate, but happens. You only can do as much as you can to enlighten them and they're just going to believe what they want to believe. I feel more sorry for my brother than I do for my sister & I -- he missed out in coming to terms with what was going on. My sister & I benefitted in becoming closer to not only my mom during her last year, but with each other. We know now that we can depend on each other for anything & everything. <snip>He has really been strong for mother and is doing great but I worry so much about him because I know it is alot of stress I am there too.<snip> It's true that caregivers need to care for themselves too. Many of us have learned the hard way of what happens when we neglect our own health. It's a good idea to start preparing now for what could be helpful to you in the near future: Getting caregivers to help out at home - go here: http://www.alz.org/carefinder/index.asp Start learning now about Nursing Homes - go here: http://health.groups.yahoo.com/group/LBDcaregivers/links And go into the folder marked: Nursing Home / Long Term Care Search A list of sites that may help in one of your most difficult decisions. Start learning now about Hospice - go here: http://www.hospicenet.org/ To find out the criteria of Hospice - go here: http://health.groups.yahoo.com/group/LBDcaregivers/files/ hospcie_1_.pdf List of Hospice Criteria Here's more links to help you get some of the answers you're looking for: Main board: http://groups.yahoo.com/group/LBDcaregivers/ (Read your emails via the board vs. your `in box'. And get into all the different sections that are available on the website.) Links Section: http://health.groups.yahoo.com/group/LBDcaregivers/links (Tons of links that is continuously a `work in progress' – all these links are useful to the caregiver. A variety of categories neatly organized into folders – what topic are you interested in? Find the folder and within it find numerous links to other websites for additional information.) Files Section: http://health.groups.yahoo.com/group/LBDcaregivers/files/ (Read other caregiver's stories, read about the good & bad drugs here, print a " companion card " from here (cards to hand out in public areas about your LO's behavior), find the locations of other caregivers who are possibility living in your immediate area, etc.) Database Section: http://health.groups.yahoo.com/group/LBDcaregivers/database (Suggested reading, learn the common denominators about our loved ones, medical referrals, nursing home referrals, bibliography of LBD in literature and film, etc.) Photos Section: http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos (Put a face to a name.) Polls Section: http://health.groups.yahoo.com/group/LBDcaregivers/polls (Several polls running re: LBD) That should get you started... Come back and update us. ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006; fell victim to rapid decline from Risperidone; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 Nina, If what our mom's doctor said is correct, lots of people are going to sleep a little easier so let's hope he is correct. Maggie --- Nina Jordan wrote: > This is probably a late reply to this subject , but > i just though i would share with you what my moms > neurogist told me last time i saw him in October. He > said that chances of me or my sibling getting LBD > are the same chances of the doctor himself getting > it. In other words it is not heredetary. I only wish > it had a cure though > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 nina, after attending several lbd conferences, in wash dc, and in jacksonville, most 'strains ' of lbd are not believed to be hereditary but there are 2 strains, one is the scanidinavian and one is the italian strain both of which are thought to be hereditary with one of them having the next generation getting lbd signs one decade earlier than their parent/. all of tis is still under study still hugs, sharon would share with you what my moms neuroginest told me last time i saw him in October. He said that chances of me or my sibling getting LBD are the same chances of the doctor himself getting it. In other words it is not heredetary. I only wish it had a cure though -- I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery .After that he developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when his blood pressure fluctuations started dropping without coming back up on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Quote Link to comment Share on other sites More sharing options...
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