Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Doris, my husband is very aware. He knows he has LBD, and is aware when things happen. He recently had a burst of anger, and hit his fist on the dashboard, because I didn't stop the car fast enough. He went into the store to pay for the gas, and when he came back he said, " Honey, I sure am sorry. " That disposition is not him, it was LBD. He does things quite often that he knows it's LBD. He swatted at a squirrel that wasn't there, and said, " I know it's a hallucination. " He talks about his hallucinations or even tells me when he is having one. Yet, at other times he is lost in another world. But, my husband isn't as far along as your Mom by a long shot. When your Mom was diagnosed with LBD was she told she has LBD? Most LBD patients retain their memories, or parts of their memories, for a long time. She may be too advanced in the disease to talk about it now. After they have had LBD for awhile they cannot retain new information very well. They really can't learn new things. Once in a while something will pop up that will surprise the caregiver. In a message dated 12/28/2007 9:08:04 PM Central Standard Time, dkaratoprak@... writes: Hi Everyone, My mom's situation is deteriorating gradually and steadily. We are still waiting for a NH placement. The caregivers in her building have increased their monitoring and of course I am as involved as ever and even more. Her hallucinations and Capgras Syndrome are increasing so I will ask to have her Seroquel increased a bit. She only takes 25mg 2x per day at this time. When she first started taking it there seemed to be a positive effect, so hopefully another slight increase will help. We play along with her hallucinations, but with the Capgras we try to stress that she is in her own apartment so that she won't leave. She even thinks that the food in her fridge belongs to someone else. A major concern that I have is that everytime she comes out of a situation, or says something that is off base, she says that she is going crazy or is stupid. Are your loved ones as aware and as verbal as my mom seems to be about her 'mistakes' (her word)? I could handle all of the behaviours that are evident more easily if I knew that she were not so aware and upset. She has even said that maybe she is hallucinating or dreaming. I'm just curious to know if she is unusual in her degree of awareness or is this common. Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Hi Doris, I feel so far from you and am! My 2 weeks in BC with have found us a brand new townhouse complex we are putting an offer on tomorrow! Now we really need to sell in Ont! I hate to hear of your mother's continuing decline, the saga of LBD. I feel so badly for what you are going through. I know that Mom knew right to the end what was going on with her status and quality of life. I am sure that to the state your mother is now she hid it from me with my weekly visits with show time. I realize it now, did not know anything of it then. I mourn the fear, concern, realization of her needs that she hid from me until they were no longer able to be hidden. The fact that you are able to be there for your mom so much more than I was enables you to live through her realization with her and in doing so you can be there for her in a way I couldn't, wasn't. I hope increasing the Seroquel helps. Will be back in a week. > > Hi Everyone, > > My mom's situation is deteriorating gradually and steadily. We are still waiting for a NH placement. The caregivers in her building have increased their monitoring and of course I am as involved as ever and even more. Her hallucinations and Capgras Syndrome are increasing so I will ask to have her Seroquel increased a bit. She only takes 25mg 2x per day at this time. When she first started taking it there seemed to be a positive effect, so hopefully another slight increase will help. We play along with her hallucinations, but with the Capgras we try to stress that she is in her own apartment so that she won't leave. She even thinks that the food in her fridge belongs to someone else. > > A major concern that I have is that everytime she comes out of a situation, or says something that is off base, she says that she is going crazy or is stupid. Are your loved ones as aware and as verbal as my mom seems to be about her 'mistakes' (her word)? I could handle all of the behaviours that are evident more easily if I knew that she were not so aware and upset. She has even said that maybe she is hallucinating or dreaming. I'm just curious to know if she is unusual in her degree of awareness or is this common. > > > Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Hi Doris, Earlier this year mom had been on seroquel 25 mg 3 times per day and we increased it to 25 morning 25 afternoon and 50 at night and it seemed to help very quickly.Her hallucinations are just now starting to come back again and she has an appt for jan 3 so we may be making a few more changes.But yes at first the extra seroquel did make a nice difference.I hope your able to get some results too, My very best to you and your mom. Ron DORIS KARATOPRAK wrote: Hi Everyone, My mom's situation is deteriorating gradually and steadily. We are still waiting for a NH placement. The caregivers in her building have increased their monitoring and of course I am as involved as ever and even more. Her hallucinations and Capgras Syndrome are increasing so I will ask to have her Seroquel increased a bit. She only takes 25mg 2x per day at this time. When she first started taking it there seemed to be a positive effect, so hopefully another slight increase will help. We play along with her hallucinations, but with the Capgras we try to stress that she is in her own apartment so that she won't leave. She even thinks that the food in her fridge belongs to someone else. A major concern that I have is that everytime she comes out of a situation, or says something that is off base, she says that she is going crazy or is stupid. Are your loved ones as aware and as verbal as my mom seems to be about her 'mistakes' (her word)? I could handle all of the behaviours that are evident more easily if I knew that she were not so aware and upset. She has even said that maybe she is hallucinating or dreaming. I'm just curious to know if she is unusual in her degree of awareness or is this common. Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) RON --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Doris, I am fully convinced that Mom was very aware throughout her last 4 years. She would watch faces to see if people " got it, " and then she would get real quiet if she thought she made a mistake. She more tended to hide it so that people wouldn't think she was " crazy. " But I think she was fully aware. 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: awareness Hi Doris, Earlier this year mom had been on seroquel 25 mg 3 times per day and we increased it to 25 morning 25 afternoon and 50 at night and it seemed to help very quickly.Her hallucinations are just now starting to come back again and she has an appt for jan 3 so we may be making a few more changes.But yes at first the extra seroquel did make a nice difference.I hope your able to get some results too, My very best to you and your mom. Ron DORIS KARATOPRAK wrote: Hi Everyone, My mom's situation is deteriorating gradually and steadily. We are still waiting for a NH placement. The caregivers in her building have increased their monitoring and of course I am as involved as ever and even more. Her hallucinations and Capgras Syndrome are increasing so I will ask to have her Seroquel increased a bit. She only takes 25mg 2x per day at this time. When she first started taking it there seemed to be a positive effect, so hopefully another slight increase will help. We play along with her hallucinations, but with the Capgras we try to stress that she is in her own apartment so that she won't leave. She even thinks that the food in her fridge belongs to someone else. A major concern that I have is that everytime she comes out of a situation, or says something that is off base, she says that she is going crazy or is stupid. Are your loved ones as aware and as verbal as my mom seems to be about her 'mistakes' (her word)? I could handle all of the behaviours that are evident more easily if I knew that she were not so aware and upset. She has even said that maybe she is hallucinating or dreaming. I'm just curious to know if she is unusual in her degree of awareness or is this common. Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) RON --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Millie and I go through this a lot. She has some awareness of LBD so I always tell her that she is not crazy, it is the disease. I tell her this part is temporary, and that she is just in a hole, but will come back out. We blame it all on the disease and assure her that we know it is not her talking when she can't get the words out. Sometimes just taking a nap helps her. Don't get me wrong, she is declining, but i would rather give her a reason, than deny that there is not something going on. We can get mad at the Lewy Body and not her. It also makes it easier to get her tocontinue to take her medicines. Millie is about ready to be upped on her Seroquel. She is seeing " the kids " almost everyday, and they are keeping her awake with their arguing. She also has Capgras Sydrome which I think we can link to an injury when she fell in the shower more than a year ago. Other than that, she has had no falls. It is so sad when they are frustrated, but we chose to be honest about why she felt like this. Eventually, it won't matter, but we can both be angry at the Lewy's, wherever they may be! Carol --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Today's posts reminded me to do something about these " kids " that Millie sees. I didn't even ask that the Seroquel be increased when the hockey puck doctor was here. I have enough to increase it myself, and then tell the nurse next week that it became necessary to keep the kids at bay. I have a massage at 11:00 to work out my lymphatic issues. I seem to hurt more if I do not keep the system working. Every little change in the barometer can make me misearble. So winter is a challenge for me, even though the high may be in the 80's today. If i were outside of southern Florida, i would be a mess all of the time. I can't stand the heat, but the cold would take me out in a hurry! Smash some LewyBody snowballs against the side of the house for me. Carol --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 I think being 'aware' is quite common w/ LBD... and why it makes it more difficult for the caregivers in comparison to Alz. It's harder for us caregivers to watch and harder for those afflicted to deal with... My mom was aware up until the very end. She knew everybody up until the very end too. There were of course times/days she was stuck behind that fog that it made it difficult for her to grasp things, say the correct names, find the right words, etc. But she knew what was going on. In regards to her hallucinations, in the moment of seeing a hallucination she'd think it was real what she was seeing - so she never knew that it was in fact an hallucination. Which makes you wonder what she was thinking/feeling in her head... If she was aware of what was going on, but at the same time thinking her hallucinations of a cat, my father (who had passed away), and " two beautiful red-hair boys " not to mention the horse & cow she'd see was real... it must have made things quite confusing for her - why, would there be a horse & cow in the 'secret garden' of the nursing home, for example... Why when she'd see my father, would it seem strange to us that she's asking for him later... It made things easier for her in the beginning when I explained that she had LBD, Lewy Body Disorder (never said 'dementia') It was sort of a relief for her to know that what was ailing her had a name, something to blame, and not that she was crazy. She had a very deep fear of being found crazy (she had an aunt who was said to be 'crazy' and lived in the attic of a house... she had a very deep fear of turning crazy like her) She also had a fear of getting dementia - she had 2 other aunts who had Alz. so she had this fear of getting Alz.... So, yes, she did get 'dementia' but her not hearing the word 'dementia' made things easier for her -- knowing it was Lewy Body Disorder (not 'dementia') made her accept her disease easier and working with what she had easier too. I truly believed that although it was difficult for us to see this ballerina in a wheelchair - it wasn't as bothersome to her as it was to us. That her 'crying spells' wasn't her, per se, but Lewy (another symptom of Lewy) uncontrollable 'crying spells' and not knowing why she was crying... She was able to accept things better knowing what she had had a name. She was also able to accept things better b/c in her mind this was just temporary. We never called where she was a 'nursing home' but that it was rehab. And up until the end she felt she was in rehab. She seemed to have learned to enjoy the little things. She enjoyed the music sessions at the NH. She enjoyed her weekly 'compassionate' massage. She enjoyed her countless visits from friends & family and (not to have a big head) but especially from " my " ... I can honestly attest that I made her day upon every visit... and how good that makes me feel now! I'm sure she had other hallucinations/delusions that she never verbalized = especially in the earlier stages... That was probably why she was always looking so fearful & anxious... And the underlying fear of being called " crazy " ... Poor Mumsie... But she's free of Lewy now and dancing on top of the clouds... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi Imogene, Yes my mom does know that she has something called Lewy Body Disease, but by now the details are gone. She just thinks she is crazy. So we keep reminding her. I even told her the other day that it was the #@$% Lewy Body Disease and I gave her permission to use that word. (lol) Of course she has forgotten. And as someone else mentioned just recently, she can't remember what she ate this morning but she remembers that people will think she is crazy and that doesn't go away. Our GP recently said to me that she wished that mom had AD instead of LBD because then she might not be so aware. That is if she has to have one of these #$#% diseases. Thanks for your response. It is appreciated. Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) Re: awareness Doris, my husband is very aware. He knows he has LBD, and is aware when things happen. He recently had a burst of anger, and hit his fist on the dashboard, because I didn't stop the car fast enough. He went into the store to pay for the gas, and when he came back he said, " Honey, I sure am sorry. " That disposition is not him, it was LBD. He does things quite often that he knows it's LBD. He swatted at a squirrel that wasn't there, and said, " I know it's a hallucination. " He talks about his hallucinations or even tells me when he is having one. Yet, at other times he is lost in another world. But, my husband isn't as far along as your Mom by a long shot. When your Mom was diagnosed with LBD was she told she has LBD? Most LBD patients retain their memories, or parts of their memories, for a long time. She may be too advanced in the disease to talk about it now. After they have had LBD for awhile they cannot retain new information very well. They really can't learn new things. Once in a while something will pop up that will surprise the caregiver. In a message dated 12/28/2007 9:08:04 PM Central Standard Time, dkaratoprak@ rogers.com writes: Hi Everyone, My mom's situation is deteriorating gradually and steadily. We are still waiting for a NH placement. The caregivers in her building have increased their monitoring and of course I am as involved as ever and even more. Her hallucinations and Capgras Syndrome are increasing so I will ask to have her Seroquel increased a bit. She only takes 25mg 2x per day at this time. When she first started taking it there seemed to be a positive effect, so hopefully another slight increase will help. We play along with her hallucinations, but with the Capgras we try to stress that she is in her own apartment so that she won't leave. She even thinks that the food in her fridge belongs to someone else. A major concern that I have is that everytime she comes out of a situation, or says something that is off base, she says that she is going crazy or is stupid. Are your loved ones as aware and as verbal as my mom seems to be about her 'mistakes' (her word)? I could handle all of the behaviours that are evident more easily if I knew that she were not so aware and upset. She has even said that maybe she is hallucinating or dreaming. I'm just curious to know if she is unusual in her degree of awareness or is this common. Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Thank you Donna! Good to hear from you. I've been meaning to let you know I got on here Ok but it took forever to catch up on the postings I missed during travel and settling time! Anyway, it's great to know one can stay connected while travelling. I wish a very happy New Year to you and everyone on here. suggested I put a house for sale flyer outside the front door New Year's Eve and bring it in first thing New Year's Day so selling the house will be one of the first thing to happen in the New Year. I told her it should be a sold sign!! LOL I love the idea, will have to get son who is dog sitting at home to do it for me! We all deserve a year of blessings and lots of positives. > > > > Hi Everyone, > > > > My mom's situation is deteriorating gradually and steadily. We are still waiting for a NH > placement. The caregivers in her building have increased their monitoring and of course I > am as involved as ever and even more. Her hallucinations and Capgras Syndrome are > increasing so I will ask to have her Seroquel increased a bit. She only takes 25mg 2x per > day at this time. When she first started taking it there seemed to be a positive effect, so > hopefully another slight increase will help. We play along with her hallucinations, but with > the Capgras we try to stress that she is in her own apartment so that she won't leave. She > even thinks that the food in her fridge belongs to someone else. > > > > A major concern that I have is that everytime she comes out of a situation, or says > something that is off base, she says that she is going crazy or is stupid. Are your loved > ones as aware and as verbal as my mom seems to be about her 'mistakes' (her word)? I > could handle all of the behaviours that are evident more easily if I knew that she were not > so aware and upset. She has even said that maybe she is hallucinating or dreaming. I'm > just curious to know if she is unusual in her degree of awareness or is this common. > > > > > > Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then > changed to LBD in March of 2005. Living independently with much support until now. On > waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Doris your Mother is further along in the Disease, and that is why she acts differently. Please continue to tell what she is doing. I will use these things as a guide, and am forewarned about what to expect. I appreciate your help this way. Love a bunch, Imogene In a message dated 12/29/2007 11:02:02 AM Central Standard Time, dkaratoprak@... writes: Hi Imogene, Yes my mom does know that she has something called Lewy Body Disease, but by now the details are gone. She just thinks she is crazy. So we keep reminding her. I even told her the other day that it was the #@$% Lewy Body Disease and I gave her permission to use that word. (lol) Of course she has forgotten. And as someone else mentioned just recently, she can't remember what she ate this morning but she remembers that people will think she is crazy and that doesn't go away. Our GP recently said to me that she wished that mom had AD instead of LBD because then she might not be so aware. That is if she has to have one of these #$#% diseases. Thanks for your response. It is appreciated. Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) **************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Another aspect of mom's symptoms that I didn't mention yesterday and which I know are very common in dementia is the paranoia about people coming into her apartment and taking or moving things. So her bath things are in a bag in her closet, pictures are hidden in drawers under her underwear she hides her purse under her pillow in the daytime and on a hanger under a blouse in the night. These are just a few things. And as Janet has said, she can't remember that she has done the hiding so it is other people who have hidden things. She is constantly rearranging clothing in the closet and her drawers as someone else just described in the last couple of days. I'll try to keep on describing some of the major behaviours when they happen. Thanks Imogene Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) Re: awareness Doris your Mother is further along in the Disease, and that is why she acts differently. Please continue to tell what she is doing. I will use these things as a guide, and am forewarned about what to expect. I appreciate your help this way. Love a bunch, Imogene In a message dated 12/29/2007 11:02:02 AM Central Standard Time, dkaratoprak@ rogers.com writes: Hi Imogene, Yes my mom does know that she has something called Lewy Body Disease, but by now the details are gone. She just thinks she is crazy. So we keep reminding her. I even told her the other day that it was the #@$% Lewy Body Disease and I gave her permission to use that word. (lol) Of course she has forgotten. And as someone else mentioned just recently, she can't remember what she ate this morning but she remembers that people will think she is crazy and that doesn't go away. Our GP recently said to me that she wished that mom had AD instead of LBD because then she might not be so aware. That is if she has to have one of these #$#% diseases. Thanks for your response. It is appreciated. Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then changed to LBD in March of 2005. Living independently with much support until now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga, Canada) ************ ********* ********* ********See AOL's top rated recipes (http://food. aol.com/top- rated-recipes? NCID=aoltop00030 000000004) Quote Link to comment Share on other sites More sharing options...
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