Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 dear victoria. like yours, my brother chose not to see mother... it has been almost three years. i feel bad for him too and am very sad. ferhan ________________________________ To: LBDcaregivers Sent: Tue, November 16, 2010 1:45:43 PM Subject: Re: ROLL CALL! Sherry - you will always be thankful for the closeness you experience during this journey. My mother & I were close before the journey, yet got even closer towards the end - I'm grateful for that. I feel bad for my brother who didn't get to experience that (his choosing) - > > Everybody - a suggestion was made that we each post a 'status update' on >where we are in our respective journies and I think that's a great idea. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Hi, All, I've been lurking on the group since January, sharing the stories and the pain that are so much like ours. My Dad, who just turned 83, is pretty far into the LBD journey. He was diagnosed with Parkinson's maybe three years ago and has been in assisted living for two years. I think it was my sister who really identified the Lewy Body, by reading online and by reading the book by the doctor who has it, sorry, the title escapes me right now. Yesterday when I visited Dad I could not tell if he was awake or sleeping with his eyes open. He talked and talked and talked, really just attempted to talk, I should say. It mostly didn't make sense. I couldn't quite tell if he was aware of me because his eyes wouldn't focus. The only time he was coherent was when he took a drink of the very cold water I gave him - that's how he likes it! - he sort of gasped from the coldness and could talk just fine for about 60 seconds. When he was babbling he was moving his head all around and grabbing for shadows. After drinking some of the water he could no longer find the straw and was sort of chewing on the lid of the cup, so I kept helping him get back to it. I'm convinced that when he's talking incoherently he knows exactly what he's saying. I can hear the sentences, the periods, but I can't make out the words. He's also started counting out loud... blah blah blah forty-two forty-three forty-four blah blah. Has anyone else experienced this? Dad can still transfer from his chair to the wheel chair with some coaching, but he is sliding out of his chair onto the floor more when he reaches for something. Recently the ALF recommended that he start hospice care, so that is in place. They've recommended a geri-chair, but we're not quite there yet. He has " nothing else " wrong with him, no heart condition or anything like that, so he could continue on a couple of years or not last the winter, only God knows. So, I read some of the posts here, learn what I can, and keep on keeping on. You all are in my prayers, because I don't know what else gets us through. Ellen in Cleveland, OH ________________________________ To: LBDcaregivers Sent: Fri, November 12, 2010 10:28:51 AM Subject: ROLL CALL!  Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. Start a new post or reply to this one - whichever is easier... I'll get us started ... As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... Where are YOU in this journey? ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; 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 November 17, 2010 Report Share Posted November 17, 2010 Hi Ellen My Dad is also my loved one with LBD, or at least we think that is what is going on. But my husband and I also cared for his grandmother when she was 92 and at the end of her life. RIght before she passed, she was grabbing in the air and finding things that only she could see. I would tell her to drop them and I would vacuum them up later on. She died soon after and she had had a UTI and was very dehydrated from the diarrhea from the antibiotic. She ended up dying shortly after seeing all those things because she went septic, but maybe if you can increase your dad's hydration level he MAY seem better. I'm not sure, but that was what happened with her. Kathy ROLL CALL! Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. Start a new post or reply to this one - whichever is easier... I'll get us started ... As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... Where are YOU in this journey? ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; 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 November 17, 2010 Report Share Posted November 17, 2010 Hi Ellen, A friend of mine had similar with her mother in a nursing home – she came back from being out of town for a week and found her mother severely dehydrated. Her mother was hospitalized and rehydrated with ivs (electrolytes) a few days and checked out to see if there were infections and so on. They suspected she did not have access to enough liquids for a week; one reason might have been a roommate issue. She decided to bring her mother home when the hospital was ready to discharge and got hospice involved. Her mother passed 4 months later but not from dehydration. It might be something to check for, especially if he is so thirsty he is chewing the edge of the cup. Also I have no doubt that our loved ones do have moments of understanding through all that confusion. Dorothy ROLL CALL! Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. Start a new post or reply to this one - whichever is easier... I'll get us started ... As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... Where are YOU in this journey? ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; 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 November 18, 2010 Report Share Posted November 18, 2010 Hi, here. I have been with this group since 2006 which is when my mom was officially diagnosed with Lewy but it had been going on before that. Mom has always been different, difficult, a loner, seems there has always been a disconnect making it hard for her to have normal relationships with anyone including family. When she started behaving extra strange, suicidal, more paranoid than normal etc I took her to the family Dr. She was treated for depression but things got worse. After several Dr visits and several mini mental exams to test for Alzheimer's (which she passed with flying colors every time!) I told her to tell the Dr what had been going on at her apartment at which time she launched into a detailed description of the strangers who had been coming in her place while she was asleep etc etc. I had been researching and suspected Lewy, she fit the symptoms to a tee. Once the Dr heard her wild stories it clicked for him and he immediately made the Dx. Over time it became apparent that mom could not be on her own. She railed against the change but we wound up moving her in with us to a lovely home we bought just for the purpose of accommodating her. Although I had sworn to myself I would never live with her, it seemed like the only thing to do. So over time we worked through several health issues she had never taken care of including getting a hearing aide which changed our lives more than it did hers. I highly recommend it for the families of the hard of hearing, who, generally will not admit they are hard of hearing. My moms hearing loss was shocking once tested and she was still in denial!! Her general health is good. She is strong and can take care of dressing and all that stuff. Ever the optimist I thought I could finally win her over because, after all, I was helping her, doing everything for her. But that was a pipe dream. Her behavior got worse over time, becoming physically & verbally abusive and combative. About a year and a half into our new roommate status I felt like I was going to have a hard time continuing. There is a caregivers resource center specific to brain disease and injury in my area which I hooked up with. They offer counseling which I attended, fantastically helpful. Seeing me getting to the end of my rope, they suggested that because my mom had been married to a WW 2 veteran that I apply for the Aide and Attendance benefit $$ offered by the VA. which would help pay to place her when the time came. I knew the time was fast approaching so in May of 2009 I applied for the benefit. It was no easy task filling out the papers, sending for documents, researching etc. Sixteen months after I started the process mom was accepted and started receiving the benefit. I had picked out a board and care home last summer and when my mom got approved for the benefit I contacted the owner and agreed to take a room which was opening up next month. In the meantime my mom did something very outrageous and dangerous while we were both at work. At that point I knew I could not leave her in the day any more. I called my board and care guy and he had an opening in another home that he owns so within days I moved her. She was so awful to me in those last few days. Even though she had been railing against living with us for three years she was mad to be moving on. She said every awful thing and laid every guilt trip on me. I started by counting the days and soon I was counting the hours until I could move her. Sounds mean of me but I couldn't wait for her to leave. I feel good about everything I have done for her. I feel like I picked the very best place for her to be. I got her the VA benefit to help pay for it. I have gotten her health issues under control. I have taken good care of her. She will never know that. Even in her " right " mind she would never acknowledge it. So now she has a wonderful new place to be and my husband and I are enjoying our new home together for the first time in 3 years. So far mom says the place is nice, the people are nice but it is not what she wants. She is nasty to me when I go there. It is ok because I can leave. I could not leave when she was nasty at my house. Owner says it takes about 6 weeks to adjust. There is nothing I can do to make her happy. ly, tired of trying. The board and care is more regimented than it was at my house which has her feeling anxious I am sure. Keep ya posted. This group has been very helpful. I feel so bad for the many here who have suffered over their lost relationships with their Lewy loved ones. In some ways I have been lucky because I never had the best friend thing going on with my mom so I haven't lost that to this disease. I always hung in there thinking maybe someday my mom would think I was the cats meow. But when you get the Lewy diagnosis it is really time to let go of that dream which has been a little hard. So that is where we are in our Lewy journey. It has been interesting reading everyones stories. & mom Ginny age 87 aricept (helped with hallucinations) zoloft (I have no idea if that is doing anything) statin meds for cholesterol -works good Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 Hi All, I am going to respond to this request, as I am more frequently a lurker than a contributor. while I am a nurse and have cared for many Lewy patients, I have seen them in senior behavior health. I am here to learn from you, the caregivers. I am building a site on dementia and want to make Lewy body as big on my site as Alzheimer's. So I am lurking and learning trying to get a feel for what it is you need and what I can do to help you. I would like to share that I feel that there has been so much money spent on research for a cure and so little time spent on how to care for a person with anytime of dementia. I feel that we are in the dark ages as far as standards of care or even guidelines for care. The medical delivery system fails families everyday. My goal is to learn and help others become educated health care consumers. to teach the care givers how to educate the health care providers on the disease process and what they are experiencing. I am hoping that if we educate and insist on research on behavioral approaches, occupational therapy for dementia patients, detailed communication techniques and habiliation therapy will become mainstream for dementia care. Right now, I am listen and learning.Trying to pay attention to what it is you need. Diane Carbo http://www.aginghomehealthcare.com http://www.dementiacaresecrets.com > > > Hi, here. I have been with this group since 2006 which is when my mom was officially diagnosed with Lewy but it had been going on before that. Mom has always been different, difficult, a loner, seems there has always been a disconnect making it hard for her to have normal relationships with anyone including family. When she started behaving extra strange, suicidal, more paranoid than normal etc I took her to the family Dr. She was treated for depression but things got worse. After several Dr visits and several mini mental exams to test for Alzheimer's (which she passed with flying colors every time!) I told her to tell the Dr what had been going on at her apartment at which time she launched into a detailed description of the strangers who had been coming in her place while she was asleep etc etc. I had been researching and suspected Lewy, she fit the symptoms to a tee. Once the Dr heard her wild stories it clicked for him and he immediately made the Dx. > > Over time it became apparent that mom could not be on her own. She railed against the change but we wound up moving her in with us to a lovely home we bought just for the purpose of accommodating her. Although I had sworn to myself I would never live with her, it seemed like the only thing to do. So over time we worked through several health issues she had never taken care of including getting a hearing aide which changed our lives more than it did hers. I highly recommend it for the families of the hard of hearing, who, generally will not admit they are hard of hearing. My moms hearing loss was shocking once tested and she was still in denial!! Her general health is good. She is strong and can take care of dressing and all that stuff. Ever the optimist I thought I could finally win her over because, after all, I was helping her, doing everything for her. But that was a pipe dream. Her behavior got worse over time, becoming physically & verbally abusive and combative. About a year and a half into our new roommate status I felt like I was going to have a hard time continuing. > > There is a caregivers resource center specific to brain disease and injury in my area which I hooked up with. They offer counseling which I attended, fantastically helpful. Seeing me getting to the end of my rope, they suggested that because my mom had been married to a WW 2 veteran that I apply for the Aide and Attendance benefit $$ offered by the VA. which would help pay to place her when the time came. I knew the time was fast approaching so in May of 2009 I applied for the benefit. It was no easy task filling out the papers, sending for documents, researching etc. Sixteen months after I started the process mom was accepted and started receiving the benefit. > > I had picked out a board and care home last summer and when my mom got approved for the benefit I contacted the owner and agreed to take a room which was opening up next month. In the meantime my mom did something very outrageous and dangerous while we were both at work. At that point I knew I could not leave her in the day any more. I called my board and care guy and he had an opening in another home that he owns so within days I moved her. She was so awful to me in those last few days. Even though she had been railing against living with us for three years she was mad to be moving on. She said every awful thing and laid every guilt trip on me. I started by counting the days and soon I was counting the hours until I could move her. Sounds mean of me but I couldn't wait for her to leave. I feel good about everything I have done for her. I feel like I picked the very best place for her to be. I got her the VA benefit to help pay for it. I have gotten her health issues under control. I have taken good care of her. She will never know that. Even in her " right " mind she would never acknowledge it. So now she has a wonderful new place to be and my husband and I are enjoying our new home together for the first time in 3 years. > > So far mom says the place is nice, the people are nice but it is not what she wants. She is nasty to me when I go there. It is ok because I can leave. I could not leave when she was nasty at my house. Owner says it takes about 6 weeks to adjust. There is nothing I can do to make her happy. ly, tired of trying. The board and care is more regimented than it was at my house which has her feeling anxious I am sure. Keep ya posted. > > This group has been very helpful. I feel so bad for the many here who have suffered over their lost relationships with their Lewy loved ones. In some ways I have been lucky because I never had the best friend thing going on with my mom so I haven't lost that to this disease. I always hung in there thinking maybe someday my mom would think I was the cats meow. But when you get the Lewy diagnosis it is really time to let go of that dream which has been a little hard. > > So that is where we are in our Lewy journey. It has been interesting reading everyones stories. > > & mom Ginny age 87 > > aricept (helped with hallucinations) > zoloft (I have no idea if that is doing anything) > statin meds for cholesterol -works good > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2010 Report Share Posted November 21, 2010 Hi dear , I'm not getting on here like I thought I would. In fact, today, I am skimming, and saw Texas Gentleman. I want to cry. I'm sorry. But, I love you all even if I'm not here. I too, grieved a lot before Don died, but get moments now when I can hardly bear the loss. Other wise, I can go about my life, almost as if it didn't happen. Go figure! Love a Lot, Imogene > > > > > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > > > > > Start a new post or reply to this one - whichever is easier... > > > > > > I'll get us started ... > > > > > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > > > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > > > > > Where are YOU in this journey? > > > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; 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 November 21, 2010 Report Share Posted November 21, 2010 Hi Diane, You are so right on all fronts. There is one thing I want to mention. Many Doctors are too proud to be taught by a non-professional, and sometimes even another professional. I have been turned down in a rude manner, or have been put off. I have gone to them very friendly and helpful. I have also run into nursing home nurses that act the same way. We have a very difficult time teaching them. I have run into many on the other hand that were very receptive and eager to gain any information forthcomeing. The caregiver struggles to find help when in the deepest trials of LBD. No wonder so many of us get sick. I struggled a long time, and finally all the way through the trip. I know the worst thing a caregiver can do to the LO is move them from place to place. I had to in order to survive myself. My beloved Don was in five NH before it was over with. None of them knew how to care for LBD. After the first NH he was not in one more that ten days to two weeks before they wanted him out of there yesterday! It was quite a journey. If it hadn't been for this list I would not have gained any help or knowledge. I love everyone on here. Diane, I really appreciate what you are doing. People in your position can do a lot more good than a house wife that they think doesn't know a cooking bean from a jelly bean. The forgoing is the reason I am not on too much, lately. I am depressed today, and it shows. Sorry about that. I miss my beloved True Texas Gentleman Husband, Don. Love to all of you, Imogene > > > > > > Hi, here. I have been with this group since 2006 which is when my mom was officially diagnosed with Lewy but it had been going on before that. Mom has always been different, difficult, a loner, seems there has always been a disconnect making it hard for her to have normal relationships with anyone including family. When she started behaving extra strange, suicidal, more paranoid than normal etc I took her to the family Dr. She was treated for depression but things got worse. After several Dr visits and several mini mental exams to test for Alzheimer's (which she passed with flying colors every time!) I told her to tell the Dr what had been going on at her apartment at which time she launched into a detailed description of the strangers who had been coming in her place while she was asleep etc etc. I had been researching and suspected Lewy, she fit the symptoms to a tee. Once the Dr heard her wild stories it clicked for him and he immediately made the Dx. > > > > Over time it became apparent that mom could not be on her own. She railed against the change but we wound up moving her in with us to a lovely home we bought just for the purpose of accommodating her. Although I had sworn to myself I would never live with her, it seemed like the only thing to do. So over time we worked through several health issues she had never taken care of including getting a hearing aide which changed our lives more than it did hers. I highly recommend it for the families of the hard of hearing, who, generally will not admit they are hard of hearing. My moms hearing loss was shocking once tested and she was still in denial!! Her general health is good. She is strong and can take care of dressing and all that stuff. Ever the optimist I thought I could finally win her over because, after all, I was helping her, doing everything for her. But that was a pipe dream. Her behavior got worse over time, becoming physically & verbally abusive and combative. About a year and a half into our new roommate status I felt like I was going to have a hard time continuing. > > > > There is a caregivers resource center specific to brain disease and injury in my area which I hooked up with. They offer counseling which I attended, fantastically helpful. Seeing me getting to the end of my rope, they suggested that because my mom had been married to a WW 2 veteran that I apply for the Aide and Attendance benefit $$ offered by the VA. which would help pay to place her when the time came. I knew the time was fast approaching so in May of 2009 I applied for the benefit. It was no easy task filling out the papers, sending for documents, researching etc. Sixteen months after I started the process mom was accepted and started receiving the benefit. > > > > I had picked out a board and care home last summer and when my mom got approved for the benefit I contacted the owner and agreed to take a room which was opening up next month. In the meantime my mom did something very outrageous and dangerous while we were both at work. At that point I knew I could not leave her in the day any more. I called my board and care guy and he had an opening in another home that he owns so within days I moved her. She was so awful to me in those last few days. Even though she had been railing against living with us for three years she was mad to be moving on. She said every awful thing and laid every guilt trip on me. I started by counting the days and soon I was counting the hours until I could move her. Sounds mean of me but I couldn't wait for her to leave. I feel good about everything I have done for her. I feel like I picked the very best place for her to be. I got her the VA benefit to help pay for it. I have gotten her health issues under control. I have taken good care of her. She will never know that. Even in her " right " mind she would never acknowledge it. So now she has a wonderful new place to be and my husband and I are enjoying our new home together for the first time in 3 years. > > > > So far mom says the place is nice, the people are nice but it is not what she wants. She is nasty to me when I go there. It is ok because I can leave. I could not leave when she was nasty at my house. Owner says it takes about 6 weeks to adjust. There is nothing I can do to make her happy. ly, tired of trying. The board and care is more regimented than it was at my house which has her feeling anxious I am sure. Keep ya posted. > > > > This group has been very helpful. I feel so bad for the many here who have suffered over their lost relationships with their Lewy loved ones. In some ways I have been lucky because I never had the best friend thing going on with my mom so I haven't lost that to this disease. I always hung in there thinking maybe someday my mom would think I was the cats meow. But when you get the Lewy diagnosis it is really time to let go of that dream which has been a little hard. > > > > So that is where we are in our Lewy journey. It has been interesting reading everyones stories. > > > > & mom Ginny age 87 > > > > aricept (helped with hallucinations) > > zoloft (I have no idea if that is doing anything) > > statin meds for cholesterol -works good > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2010 Report Share Posted November 21, 2010 Oh my dear Donna, Thank you for your lovable letter. I'm not well today, so thoughts flashed through my mind that made me sad, but I'm better tonight. It's so good of you to understand where I'm at in this whole LBD journey. Yes, it'a a long journey, and a very rough one. I sure do love you and , for all the work you do to keep us going. Thank you so much. Love with a full heart, Imogene > > > > > > > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > > > > > > > Start a new post or reply to this one - whichever is easier... > > > > > > > > I'll get us started ... > > > > > > > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > > > > > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > > > > > > > Where are YOU in this journey? > > > > > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; 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 November 27, 2010 Report Share Posted November 27, 2010 Ferhan - thank you for your status update in 'roll call' - many have suggested covering anything with reflection to help with hallucinations... not only mirrors, but windows & TVs... I'm glad she finally found a Lewy-savvy doctor. Here's hoping you have many more special moments with her - sometimes those little things just keep us going. > > > > Jim is progressing into LBD at a faster pace now. I'm still on a roller coaster > > > > with good and not so good days, never knowing what each day will be like when I > > > > arrive. > > Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by > > being at the nursing home where he has resided for 4 1/2 years by toileting > > > > him while I am there to keep him dry. I visit daily for several hours. Jim is > > not fond of cranberry juice and it is hard to get him to take it. For some > > reason the doctor will not prescribe cranberry tablets. > > Recently, about a month ago, I got a FWD on the computer about Cinnamon > > preventing UTIs > > http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html and I > > > > started giving Jim the honey/cinnamon mixture in heated water as a warm drink > > and he likes it, I have given it to him everyday for a month and his urine is > > clear again, so I believe it is working. It would be great if he has one less > > battle to fight and the cinnamon actually does work. Jim seems to be losing > > weight, even with eating his meals and I am bringing in cake and things high in > > > > calories to help him to gain weight, he also has a " Magic Cup " everynight, > > similar to ice cream, but for people that eat pureed food and have trouble > > swallowing. The cup is about 300 calories. He still is not gaining. Jim used to > > > > stay up for activities and other events at the nursing home, but he seems to > >get > > > > tired faster now and sleeps more often in his wheelchair. Sometimes they > >attempt > > > > to bring him to his bed for a nap, but he fights going to bed, so they let him > > > sleep in his chair during the day. > > Other than losing weight, he seems to be in good spirits when it is a good day. > > > > The good days come and go, but when they are there, they are very good and he > > communicates with me and smiles. Another thing, I am not sure if it is my > > imagination, but the honey/cinnamon drink seems to have helped Jim speak more > > clearly and a little louder. It is not his constant whispery voice. > > Jan Colello, San Francisco Bay Area, CA > > Husband, Jim, dx w/ LBD 2003 > > > >  > > > > > > > > ________________________________ > > From: <octoryrose@> > > To: LBDcaregivers > > Sent: Fri, November 12, 2010 7:28:51 AM > > Subject: ROLL CALL! > > > >  > > Everybody - a suggestion was made that we each post a 'status update' on where > > > we are in our respective journies and I think that's a great idea. > > > > > > Start a new post or reply to this one - whichever is easier... > > > > I'll get us started ... > > > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > > basis by providing information for LBDCaregivers & the famous Links section, > > facilitating a support group in my neck of the woods (had a meeting last night) > > > > and managing the LBDA page on Facebook. > > > > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > > > > events, all different, from a lecture by Gomperts, MD of Mass. General > > > Hospital, to art therapy for caregivers, to a book signing by Graboys, > > MD, to a race - which made history again by bringing in more donations for one > > > event to LBDA. Many people made the above possible - I'm proud to have been one > > > > of many... > > > > Where are YOU in this journey? > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; > >Mom > > > > fell into the 50% category of those who could not handle antipsychotics; 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 November 27, 2010 Report Share Posted November 27, 2010 Oh - what an ordeal! Glad your mom is in a safe place and you have your house back And here's that benefit you're talking about for those who are interested: VA Reaches Out to Veterans and Spouses " Aid and Attendance " an Under-Used Benefit There's a special monthly pension benefit called Aid and Attendance which is available to veterans and surviving spouses who need in-home care, live in nursing homes, or assisted living. (suggested by livingston_stone_2) http://www1.va.gov/opa/pressrel/docs/aid-and-attendance.doc > > > Hi, here. I have been with this group since 2006 which is when my mom was officially diagnosed with Lewy but it had been going on before that. Mom has always been different, difficult, a loner, seems there has always been a disconnect making it hard for her to have normal relationships with anyone including family. When she started behaving extra strange, suicidal, more paranoid than normal etc I took her to the family Dr. She was treated for depression but things got worse. After several Dr visits and several mini mental exams to test for Alzheimer's (which she passed with flying colors every time!) I told her to tell the Dr what had been going on at her apartment at which time she launched into a detailed description of the strangers who had been coming in her place while she was asleep etc etc. I had been researching and suspected Lewy, she fit the symptoms to a tee. Once the Dr heard her wild stories it clicked for him and he immediately made the Dx. > > Over time it became apparent that mom could not be on her own. She railed against the change but we wound up moving her in with us to a lovely home we bought just for the purpose of accommodating her. Although I had sworn to myself I would never live with her, it seemed like the only thing to do. So over time we worked through several health issues she had never taken care of including getting a hearing aide which changed our lives more than it did hers. I highly recommend it for the families of the hard of hearing, who, generally will not admit they are hard of hearing. My moms hearing loss was shocking once tested and she was still in denial!! Her general health is good. She is strong and can take care of dressing and all that stuff. Ever the optimist I thought I could finally win her over because, after all, I was helping her, doing everything for her. But that was a pipe dream. Her behavior got worse over time, becoming physically & verbally abusive and combative. About a year and a half into our new roommate status I felt like I was going to have a hard time continuing. > > There is a caregivers resource center specific to brain disease and injury in my area which I hooked up with. They offer counseling which I attended, fantastically helpful. Seeing me getting to the end of my rope, they suggested that because my mom had been married to a WW 2 veteran that I apply for the Aide and Attendance benefit $$ offered by the VA. which would help pay to place her when the time came. I knew the time was fast approaching so in May of 2009 I applied for the benefit. It was no easy task filling out the papers, sending for documents, researching etc. Sixteen months after I started the process mom was accepted and started receiving the benefit. > > I had picked out a board and care home last summer and when my mom got approved for the benefit I contacted the owner and agreed to take a room which was opening up next month. In the meantime my mom did something very outrageous and dangerous while we were both at work. At that point I knew I could not leave her in the day any more. I called my board and care guy and he had an opening in another home that he owns so within days I moved her. She was so awful to me in those last few days. Even though she had been railing against living with us for three years she was mad to be moving on. She said every awful thing and laid every guilt trip on me. I started by counting the days and soon I was counting the hours until I could move her. Sounds mean of me but I couldn't wait for her to leave. I feel good about everything I have done for her. I feel like I picked the very best place for her to be. I got her the VA benefit to help pay for it. I have gotten her health issues under control. I have taken good care of her. She will never know that. Even in her " right " mind she would never acknowledge it. So now she has a wonderful new place to be and my husband and I are enjoying our new home together for the first time in 3 years. > > So far mom says the place is nice, the people are nice but it is not what she wants. She is nasty to me when I go there. It is ok because I can leave. I could not leave when she was nasty at my house. Owner says it takes about 6 weeks to adjust. There is nothing I can do to make her happy. ly, tired of trying. The board and care is more regimented than it was at my house which has her feeling anxious I am sure. Keep ya posted. > > This group has been very helpful. I feel so bad for the many here who have suffered over their lost relationships with their Lewy loved ones. In some ways I have been lucky because I never had the best friend thing going on with my mom so I haven't lost that to this disease. I always hung in there thinking maybe someday my mom would think I was the cats meow. But when you get the Lewy diagnosis it is really time to let go of that dream which has been a little hard. > > So that is where we are in our Lewy journey. It has been interesting reading everyones stories. > > & mom Ginny age 87 > > aricept (helped with hallucinations) > zoloft (I have no idea if that is doing anything) > statin meds for cholesterol -works good > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Imogene - you take all the time you need to grieve... It's perfectly understandable. We're here whenever you need us. > > > > > > > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > > > > > > > Start a new post or reply to this one - whichever is easier... > > > > > > > > I'll get us started ... > > > > > > > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > > > > > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > > > > > > > Where are YOU in this journey? > > > > > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; 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 November 27, 2010 Report Share Posted November 27, 2010 Norma - Thank You! for all that you're doing in the big city. You've touched so many lives already there! We're lucky that you're there. - > > Hi everyone. This is Norma from New York. I've lost track of when my Mom was officially diagnosed, but her symptoms began when she was in her late 70's. It took many doctors (specialists) to correctly diagnose her. One physician mentioned LBD to another one in my presence and I then went home and searched the web. When I found LBDA online, I could not believe that my Mom had every symptom. It's what made everything finally come together. Mom is in the late stage of the disease and is now 88. She has been bedridden for over 3 years and has needed complete care even before then. She has been living with me for the past 2-1/2 years (with 24 hour care). Moving her in with me (we were always close friends) was the best decision I have ever made. Knowing that I can see her every day and be sure her needs are being met--and that she knows I am there--has made a big difference in my life. Before that I traveled 45 minutes 5 days a week to check on her. I facilitate the two New York support groups (one in the Metro New York area which meets in Manhattan) and one in the suburbs of Long Island. The groups have helped many people tremendously and continue to meet once a month. Dr. Jim Galvin, head of the recently opened NYU Lewy Body Center, has spoken to our group twice and has made a huge difference with his expertise. I was fortunate to be able to join of the LBDA with a few other support group members to bring attention to LBD outside of the CBS and NBC studios in New York and was recently interviewed by a reporter for New York Press re caregiving and LBD. The moments of special connection with my Mom still continue (though they happen less seldom) and they are what brings the most joy into my life. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 <snip> I am building a site on dementia and want to make Lewy body as big on my site as Alzheimer's. <snip> Thank you - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Hi all, Last time I wrote, Dad was just decertified from hospice for " failing to fail to thrive " . His wonderful aides keep him clean and fed, despite the increasing difficulties he presents. His primary care doctor prescribed palliative care from the same organization that provided hospice, so there is someone to call when he has problems. So far the only problem has been a rash on his back that appeared on Thanksgiving and is getting worse, despite applications of cortisone cream and A & D ointment. Naturally, the palliative care group is on bare-bones staffing for this weekend, so he'll suffer with the rash until Monday. This has been a tough holiday for me. Except when we were visiting my husband's family - maybe one year in five - Dad had Thanksgiving dinner at my house every year for more than thirty years. This was the first year that he was unable to come. He rarely leaves his room and leaves the second floor of his house only when his PT comes and there are two people to help him into the stair lift. Often he'll decide not to move between the commode, wheelchair, and bed. He freezes in place. He doesn't seem afraid, just determined not to move. Despite his apparent fragility, he's still very strong. He no longer recognizes me except as someone who's important ... I don't know whether I'm Nurse Ratchett from One Flew Over the Cuckoo's Nest or his guardian angel - perhaps both from time to time. When an aide has waited for an hour after giving him an extra Seroquel for him to decide that moving from the commode to bed is OK, they call me and between us we man-handle him into bed. He shows no sign of understanding what is said to him. He sometimes talks, but rarely says more than a word or two of English before reverting to babble. On the other hand, his appetite is good, as is his health, and he generally seems happy. Once in a while, he looks like himself and says something quite funny, like " You're really not my type " to an aide who's trying to undress him for bed. He wanted to stay at home, back when he was himself. Now that he probably wouldn't know the difference, I worry that the caregivers in a nursing home would not have forty-five minutes per meal to feed him and would not change him whenever he soils himself as his current aides do. So we continue. Best regards, Ann Father 88, diagnosed with progressive dementia Nov 2005 and Parkinson's 2007. Taking Razadyne, Namenda, Sinemet, & Seroquel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Dear , Thank you for kind words and support. All the best, Ferhan ________________________________ To: LBDcaregivers Sent: Sat, November 27, 2010 3:06:52 PM Subject: Fw: Re: ROLL CALL! Ferhan - thank you for your status update in 'roll call' - many have suggested covering anything with reflection to help with hallucinations... not only mirrors, but windows & TVs... I'm glad she finally found a Lewy-savvy doctor. Here's hoping you have many more special moments with her - sometimes those little things just keep us going. > > > > Jim is progressing into LBD at a faster pace now. I'm still on a roller >coaster > > > > > with good and not so good days, never knowing what each day will be like when >I > > > > > arrive. > > Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by > > being at the nursing home where he has resided for 4 1/2 years by >toileting > > > > > him while I am there to keep him dry. I visit daily for several hours. Jim is > > > not fond of cranberry juice and it is hard to get him to take it. For some > > reason the doctor will not prescribe cranberry tablets. > > Recently, about a month ago, I got a FWD on the computer about Cinnamon > > preventing UTIs > > http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html >and I > > > > > started giving Jim the honey/cinnamon mixture in heated water as a warm drink > > > and he likes it, I have given it to him everyday for a month and his urine is > > > clear again, so I believe it is working. It would be great if he has one less > > > battle to fight and the cinnamon actually does work. Jim seems to be losing > > weight, even with eating his meals and I am bringing in cake and things high >in > > > > > calories to help him to gain weight, he also has a " Magic Cup " everynight, > > similar to ice cream, but for people that eat pureed food and have trouble > > swallowing. The cup is about 300 calories. He still is not gaining. Jim used >to > > > > > stay up for activities and other events at the nursing home, but he seems to > >get > > > > tired faster now and sleeps more often in his wheelchair. Sometimes they > >attempt > > > > to bring him to his bed for a nap, but he fights going to bed, so they let >him > > > > sleep in his chair during the day. > > Other than losing weight, he seems to be in good spirits when it is a good >day. > > > > > The good days come and go, but when they are there, they are very good and he > > > communicates with me and smiles. Another thing, I am not sure if it is my > > imagination, but the honey/cinnamon drink seems to have helped Jim speak more > > > clearly and a little louder. It is not his constant whispery voice. > > Jan Colello, San Francisco Bay Area, CA > > Husband, Jim, dx w/ LBD 2003 > > > >  > > > > > > > > ________________________________ > > From: <octoryrose@> > > To: LBDcaregivers > > Sent: Fri, November 12, 2010 7:28:51 AM > > Subject: ROLL CALL! > > > >  > > Everybody - a suggestion was made that we each post a 'status update' on >where > > > > we are in our respective journies and I think that's a great idea. > > > > > > Start a new post or reply to this one - whichever is easier... > > > > I'll get us started ... > > > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > > basis by providing information for LBDCaregivers & the famous Links section, > > facilitating a support group in my neck of the woods (had a meeting last >night) > > > > > and managing the LBDA page on Facebook. > > > > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had >4 > > > > > events, all different, from a lecture by Gomperts, MD of Mass. >General > > > > Hospital, to art therapy for caregivers, to a book signing by Graboys, > > > MD, to a race - which made history again by bringing in more donations for >one > > > > event to LBDA. Many people made the above possible - I'm proud to have been >one > > > > > of many... > > > > Where are YOU in this journey? > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; > >Mom > > > > fell into the 50% category of those who could not handle antipsychotics; 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 November 30, 2010 Report Share Posted November 30, 2010 Hi Ann - hopefully your Thanksgiving was a bit better as expected. I know how difficult it is when traditions end due to sickness and having to start new traditions... I wonder if you could continue w/ the palliative care in a nursing home - your dad would have that much more help... something to think about... but also the change might be stressful for your dad - so continuing in his home as long as it's doable might be best... Thinking of you. > > Hi all, > > Last time I wrote, Dad was just decertified from hospice > for " failing to fail to thrive " . His wonderful aides keep > him clean and fed, despite the increasing difficulties he > presents. His primary care doctor prescribed palliative > care from the same organization that provided hospice, so > there is someone to call when he has problems. So far the > only problem has been a rash on his back that appeared on > Thanksgiving and is getting worse, despite applications of > cortisone cream and A & D ointment. Naturally, the palliative > care group is on bare-bones staffing for this weekend, so > he'll suffer with the rash until Monday. > > This has been a tough holiday for me. Except when we > were visiting my husband's family - maybe one year in five - > Dad had Thanksgiving dinner at my house every year for more > than thirty years. This was the first year that he was unable > to come. He rarely leaves his room and leaves the second floor > of his house only when his PT comes and there are two people to > help him into the stair lift. Often he'll decide not to move > between the commode, wheelchair, and bed. He freezes in place. > He doesn't seem afraid, just determined not to move. Despite > his apparent fragility, he's still very strong. > > He no longer recognizes me except as someone who's important ... > I don't know whether I'm Nurse Ratchett from One Flew Over the > Cuckoo's Nest or his guardian angel - perhaps both from time to > time. When an aide has waited for an hour after giving him an > extra Seroquel for him to decide that moving from the commode to > bed is OK, they call me and between us we man-handle him into > bed. > > He shows no sign of understanding what is said to him. He > sometimes talks, but rarely says more than a word or two of > English before reverting to babble. On the other hand, his > appetite is good, as is his health, and he generally seems happy. > Once in a while, he looks like himself and says something quite > funny, like " You're really not my type " to an aide who's trying > to undress him for bed. > > He wanted to stay at home, back when he was himself. Now that > he probably wouldn't know the difference, I worry that the > caregivers in a nursing home would not have forty-five minutes > per meal to feed him and would not change him whenever he soils > himself as his current aides do. So we continue. > > Best regards, > > Ann > > Father 88, diagnosed with progressive dementia Nov 2005 and > Parkinson's 2007. Taking Razadyne, Namenda, Sinemet, & Seroquel. > Quote Link to comment Share on other sites More sharing options...
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