Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi Dena, I just read in your March 20 post that your mom was doing very well and commented on it. I am sorry to hear now that she is slipping away. Maybe you meant she was doing as well as can be for this phase of her life. I misunderstood and thought she was coming around in strength. Jim seems to have gained strength. He is practically back to where he was in November before he was hospitalized. This up and down roller coaster is giving me motion sickness. I am elated that Jim's strength has picked up again, but who knows what lurks around the corner. LBD is the strangest disease to deal with. You never know what you're dealing with from hour to hour, day to day, week to week....... Things can change so fast with this disease. There is no pattern or stages to follow. Every LO is so different in their journey. Most have similar symptoms and behaviors, yet at different phases of their disease. I just enjoy and cherish each day with Jim that I can. I am still fortunate that Jim can talk. Most of the time, he makes no sense, but when he gets up in the morning around 9AM until around noon time, he is crystal clear, after that he mumbles and gets into a whispery voice and usually makes no sense if you can make out what he is saying. Jim has Parkinson's Dementia. He was diagnosed in the early 90s with Parkinsons. When the dementia showed up, the picture was clear to the neurologist that it was an LBD Disease. The dementia started showing up big time in 2000, so with the combination of the Parkinsons/ Dementia, he is going on his 7th year now. Take Care Dena..........Hugs, Jan Sandie and wrote: Hi Dena- I remember allowing a good 2 weeks when a change came about to see if my dad was going through a fluctuation or progression. I am sad to read that your mom has progressed in her journey. It is comforting to know your mom is comfortable unless moved. Please keep us updated. Take care of yourself, stay strong, and you are always in our thoughts and prayers- Sandie Des Moines, IA -- Re: Dad is in the > hospital > > > > Hi > > > > I just returned from a week of being out of state. > > > > I am so sorry to hear about your Dad. I will keep > > you > > both in my thoughts and prayers. > > > > Dena in So CA > > Mother (84) Living with LBD in NH > > > > > > > > --- ljrob09 wrote: > > > > > Well, things had been going along pretty good > for > > > the last year. > > > Finally got the level of care where it needed to > > be > > > and my father > > > seemed to be doing reasonably well. Have > > certainly > > > enjoyed many, > > > many good times with him. > > > > > > Yesterday, despite my resolution for " no more > > > hospitals " , we found > > > ourselves in need of emergency care. This was > > just > > > too much for the > > > NH to handle. > > > > > > High fever, his heart was racing, he couldn't > > > breathe and jerking. > > > They still don't know what it is, possibly > > > aspiration pneumonia or > > > some other bacterial infection. Also, his > > normally > > > high blood > > > pressure has now bottomed out. > > > > > > I hope that not too much damage has been done. > > I've > > > seen him rally > > > so many times, that I am hoping he can do it > > again. > > > But if it is his > > > time, I hope he goes peacefully. > > > > > > I have all of the bad meds listed as an allergy, > > but > > > he was so out of > > > it that I don't think he will have his usual > > > episodic delirium. No > > > one there had ever heard of LBD... " I've heard of > > > dementia, but not > > > LBD " ...sigh. > > > > > > Well, I'm hoping for the best. > > > > > > It's nice to have this support here. > > > > > > Take care, > > > > > > Daughter of Bill, 91 > > > > > > > > > > > > > > > > > _____________________________________________________________________________ > > > ______ > > Don't get soaked. Take a quick peek at the > forecast > > with the Yahoo! Search weather shortcut. > > > http://tools.search.yahoo.com/shortcuts/#loc_weather > > > > > > Welcome to LBDcaregivers. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi Jan I guess what I mean by doing well is..... She is gaining weight. Eats well. I do not think she is stronger by any means. But as far as cognitive abilities she is slipping even further than before, if that is possible. She has not made sense for over a year now. She has answered questions only occasionally and that has not happened for several months now. When she was taken off her meds she just went into this dark hole and has never come out. When I spoke to the Geriatric Dr. about this they commented that this does happen some times. I blame the Hospice Dr. He just ordered her off of all of these meds when he probably knew very little about the disease. And I am to blame also. I just blindly followed instead of doing more research. Having said all that, I do feel that in a way this is the best thing to have had happened to her. She does not know where she is or what is going on. She would hate to know that she is living like this. She hated knowing what was happening to her in the begining. Unless moved she is content with her world as it is. She hates to be touched too. She jumps ever time I try to hold her hand or stroke her hair. As if I was going to hit her. I do not think she is being abused in the NH. So is it the Parkinson's part of LBD? I am not sure I have heard that anyone else does this, so I am just guessing at this point. It may be that it just hurts so much when she is touched or moved that she anticipates the pain. She has not walked or stood for over a year. Her arthritis has got to be killing her too. She is on Tylenol for pain, but that is it. So, I do believe that she is comfortable where she is. I will never have to hear, " Please take me home " etc.. I know that that has got to be the hardest thing to hear. I truly feel for those who have to hear that on every visit. It has got to be so heart breaking. I can't even imagine. The hardest part is that I have no relationship at all with my Mom. I tell her what is going on, but get no response. I have lost her. It is as if I don't exist. And truly she does not exist either. Only the shell is left behind. But.... I try not to have a pity party and get all worked up over it. You just have to go one day at a time and live life for today only and not look too far down that road. I have gone on for too long everyone, sorry. Dena in So CA Mother (84) Living with LBD in NH --- Janet Colello wrote: > Hi Dena, > I just read in your March 20 post that your mom > was doing very well and commented on it. I am sorry > to hear now that she is slipping away. Maybe you > meant she was doing as well as can be for this phase > of her life. I misunderstood and thought she was > coming around in strength. > Jim seems to have gained strength. He is > practically back to where he was in November before > he was hospitalized. This up and down roller coaster > is giving me motion sickness. I am elated that Jim's > strength has picked up again, but who knows what > lurks around the corner. LBD is the strangest > disease to deal with. You never know what you're > dealing with from hour to hour, day to day, week to > week....... > Things can change so fast with this disease. There > is no pattern or stages to follow. Every LO is so > different in their journey. Most have similar > symptoms and behaviors, yet at different phases of > their disease. I just enjoy and cherish each day > with Jim that I can. I am still fortunate that Jim > can talk. Most of the time, he makes no sense, but > when he gets up in the morning around 9AM until > around noon time, he is crystal clear, after that he > mumbles and gets into a whispery voice and usually > makes no sense if you can make out what he is > saying. Jim has Parkinson's Dementia. He was > diagnosed in the early 90s with Parkinsons. When the > dementia showed up, the picture was clear to the > neurologist that it was an LBD Disease. The > dementia started showing up big time in 2000, so > with the combination of the Parkinsons/ Dementia, he > is going on his 7th year now. > Take Care Dena..........Hugs, Jan > > Sandie and wrote: > Hi Dena- > > I remember allowing a good 2 weeks when a change > came about to see if my dad was going through a > fluctuation or progression. I am sad to read that > your > mom has progressed in her journey. It is comforting > to know your mom is comfortable unless moved. > Please keep us updated. > > Take care of yourself, stay strong, and you are > always in our thoughts and prayers- > > Sandie > Des Moines, IA > > > > -- Re: Dad is in the > > hospital > > > > > > Hi > > > > > > I just returned from a week of being out of > state. > === message truncated === ________________________________________________________________________________\ ____ The fish are biting. 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Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi Sandie I think that is good advise. Many times it is just a temporary condition. Dena in So CA Mother (84) Living with LBD in NH --- Sandie and wrote: > Hi Dena- > > I remember allowing a good 2 weeks when a change > came about to see if my dad was going through a > fluctuation or progression. I am sad to read that > your > mom has progressed in her journey. It is comforting > to know your mom is comfortable unless moved. > Please keep us updated. > > Take care of yourself, stay strong, and you are > always in our thoughts and prayers- > > Sandie > Des Moines, IA > > > > -- Re: Dad is in the > > hospital > > > > > > Hi > > > > > > I just returned from a week of being out of > state. > > > > > > I am so sorry to hear about your Dad. I will > keep > > > you > > > both in my thoughts and prayers. > > > > > > Dena in So CA > > > Mother (84) Living with LBD in NH > > > > > > > > > > > > --- ljrob09 wrote: > > > > > > > Well, things had been going along pretty good > > for > > > > the last year. > > > > Finally got the level of care where it needed > to > > > be > > > > and my father > > > > seemed to be doing reasonably well. Have > > > certainly > > > > enjoyed many, > > > > many good times with him. > > > > > > > > Yesterday, despite my resolution for " no more > > > > hospitals " , we found > > > > ourselves in need of emergency care. This was > > > just > > > > too much for the > > > > NH to handle. > > > > > > > > High fever, his heart was racing, he couldn't > > > > breathe and jerking. > > > > They still don't know what it is, possibly > > > > aspiration pneumonia or > === message truncated === ________________________________________________________________________________\ ____ Never miss an email again! Yahoo! Toolbar alerts you the instant new Mail arrives. http://tools.search.yahoo.com/toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 Dena, I'm so sorry to hear what you're going through. I can feel for you in that my Mom is the same age as yours. She eats well also, but I don't think she's gaining weight. I am so thankful, though, that she still knows me and can answer a question now and then. It must be heartbreaking. I'm going to a new neurologist next week and am going to ask about trying her on Exelon now. In listening to what has said, I want to try whatever I can. Do you think this could possibly be an option? I know everyone reacts differently and I also know that it may not help, but who really knows? My thoughts are with you, Norma Dena LEAVITT <d_j_leavitt@yaho o.com> To Sent by: LBDcaregivers LBDcaregivers@yah cc oogroups.com Subject Re: Dena 03/21/2007 07:47 PM Please respond to LBDcaregivers@yah oogroups.com Hi Jan I guess what I mean by doing well is..... She is gaining weight. Eats well. I do not think she is stronger by any means. But as far as cognitive abilities she is slipping even further than before, if that is possible. She has not made sense for over a year now. She has answered questions only occasionally and that has not happened for several months now. When she was taken off her meds she just went into this dark hole and has never come out. When I spoke to the Geriatric Dr. about this they commented that this does happen some times. I blame the Hospice Dr. He just ordered her off of all of these meds when he probably knew very little about the disease. And I am to blame also. I just blindly followed instead of doing more research. Having said all that, I do feel that in a way this is the best thing to have had happened to her. She does not know where she is or what is going on. She would hate to know that she is living like this. She hated knowing what was happening to her in the begining. Unless moved she is content with her world as it is. She hates to be touched too. She jumps ever time I try to hold her hand or stroke her hair. As if I was going to hit her. I do not think she is being abused in the NH. So is it the Parkinson's part of LBD? I am not sure I have heard that anyone else does this, so I am just guessing at this point. It may be that it just hurts so much when she is touched or moved that she anticipates the pain. She has not walked or stood for over a year. Her arthritis has got to be killing her too. She is on Tylenol for pain, but that is it. So, I do believe that she is comfortable where she is. I will never have to hear, " Please take me home " etc.. I know that that has got to be the hardest thing to hear. I truly feel for those who have to hear that on every visit. It has got to be so heart breaking. I can't even imagine. The hardest part is that I have no relationship at all with my Mom. I tell her what is going on, but get no response. I have lost her. It is as if I don't exist. And truly she does not exist either. Only the shell is left behind. But.... I try not to have a pity party and get all worked up over it. You just have to go one day at a time and live life for today only and not look too far down that road. I have gone on for too long everyone, sorry. Dena in So CA Mother (84) Living with LBD in NH --- Janet Colello wrote: > Hi Dena, > I just read in your March 20 post that your mom > was doing very well and commented on it. I am sorry > to hear now that she is slipping away. Maybe you > meant she was doing as well as can be for this phase > of her life. I misunderstood and thought she was > coming around in strength. > Jim seems to have gained strength. He is > practically back to where he was in November before > he was hospitalized. This up and down roller coaster > is giving me motion sickness. I am elated that Jim's > strength has picked up again, but who knows what > lurks around the corner. LBD is the strangest > disease to deal with. You never know what you're > dealing with from hour to hour, day to day, week to > week....... > Things can change so fast with this disease. There > is no pattern or stages to follow. Every LO is so > different in their journey. Most have similar > symptoms and behaviors, yet at different phases of > their disease. I just enjoy and cherish each day > with Jim that I can. I am still fortunate that Jim > can talk. Most of the time, he makes no sense, but > when he gets up in the morning around 9AM until > around noon time, he is crystal clear, after that he > mumbles and gets into a whispery voice and usually > makes no sense if you can make out what he is > saying. Jim has Parkinson's Dementia. He was > diagnosed in the early 90s with Parkinsons. When the > dementia showed up, the picture was clear to the > neurologist that it was an LBD Disease. The > dementia started showing up big time in 2000, so > with the combination of the Parkinsons/ Dementia, he > is going on his 7th year now. > Take Care Dena..........Hugs, Jan > > Sandie and wrote: > Hi Dena- > > I remember allowing a good 2 weeks when a change > came about to see if my dad was going through a > fluctuation or progression. I am sad to read that > your > mom has progressed in her journey. It is comforting > to know your mom is comfortable unless moved. > Please keep us updated. > > Take care of yourself, stay strong, and you are > always in our thoughts and prayers- > > Sandie > Des Moines, IA > > > > -- Re: Dad is in the > > hospital > > > > > > Hi > > > > > > I just returned from a week of being out of > state. > === message truncated === __________________________________________________________ The fish are biting. Get more visitors on your site using Yahoo! 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Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 Hi Norma To be honest, I am not sure I really want her to be more cognitively with it. She has settled into the the place where she is now and if she comes around more she may really hate where she is. My mom was a very brilliant woman and would dress perfectly and never wanted anyone to see her not totally put together with make up etc... Don't get me wrong. I really miss not having a conversation or at least part of one with her. I would love for myself to be able to talk to her. But... is that the best for her at this point? Her feet have dropped and arms are drawn up and I don't believe that can be reversed. She would be unable to stand or walk. On some level I think it is better for her not to be aware of what is going on. I really am not being cruel. She is just comfortable in her own world and rarely seems frightened or scared. She is only in pain when moved and that will always continue. And getting a Geriatric Dr. to the NH might take some doing. I am not sure about that. I have not tried to do that yet. Anyway, something to consider and think about. I will keep it in mind. Thanks, Norma Dena in So CA Mother (84) Living with LBD in NH --- Norma Loeb/CORPHQ/NYTIMES wrote: > > Dena, > > I'm so sorry to hear what you're going through. I > can feel for you in that > my Mom is the same age as yours. She eats well > also, but I don't think > she's gaining weight. I am so thankful, though, > that she still knows me > and can answer a question now and then. It must be > heartbreaking. I'm > going to a new neurologist next week and am going to > ask about trying her > on Exelon now. In listening to what has said, > I want to try whatever > I can. Do you think this could possibly be an > option? I know everyone > reacts differently and I also know that it may not > help, but who really > knows? > > My thoughts are with you, Norma > > > > > > Dena LEAVITT > > <d_j_leavitt@yaho > > o.com> > To > Sent by: > LBDcaregivers > LBDcaregivers@yah > cc > oogroups.com > > > Subject > Re: > Dena > 03/21/2007 07:47 > > PM > > > > > > Please respond to > > LBDcaregivers@yah > > oogroups.com > > > > > > > > > > > > > Hi Jan > > I guess what I mean by doing well is..... She is > gaining weight. Eats well. I do not think she is > stronger by any means. But as far as cognitive > abilities she is slipping even further than before, > if > that is possible. She has not made sense for over a > year now. She has answered questions only > occasionally > and that has not happened for several months now. > When > she was taken off her meds she just went into this > dark hole and has never come out. When I spoke to > the > Geriatric Dr. about this they commented that this > does > happen some times. I blame the Hospice Dr. He just > ordered her off of all of these meds when he > probably > knew very little about the disease. And I am to > blame > also. I just blindly followed instead of doing more > research. Having said all that, I do feel that in a > way this is the best thing to have had happened to > her. She does not know where she is or what is going > on. She would hate to know that she is living like > this. She hated knowing what was happening to her in > the begining. Unless moved she is content with her > world as it is. She hates to be touched too. She > jumps > ever time I try to hold her hand or stroke her hair. > As if I was going to hit her. I do not think she is > being abused in the NH. So is it the Parkinson's > part > of LBD? I am not sure I have heard that anyone else > does this, so I am just guessing at this point. It > may > be that it just hurts so much when she is touched or > moved that she anticipates the pain. She has not > walked or stood for over a year. Her arthritis has > got > to be killing her too. She is on Tylenol for pain, > but > that is it. So, I do believe that she is comfortable > where she is. I will never have to hear, " Please > take > me home " etc.. I know that that has got to be the > hardest thing to hear. I truly feel for those who > have > to hear that on every visit. It has got to be so > heart > breaking. I can't even imagine. The hardest part is > that I have no relationship at all with my Mom. I > tell > her what is going on, but get no response. I have > lost > her. It is as if I don't exist. And truly she does > not > exist either. Only the shell is left behind. But.... > I > try not to have a pity party and get all worked up > over it. You just have to go one day at a time and > live life for today only and not look too far down > that road. I have gone on for too long everyone, > sorry. > > Dena in So CA > Mother (84) Living with LBD in NH > > --- Janet Colello wrote: > > > Hi Dena, > > I just read in your March 20 post that your mom > > was doing very well and commented on it. I am > sorry > > to hear now that she is slipping away. Maybe you > > meant she was doing as well as can be for this > phase > > of her life. I misunderstood and thought she was > > coming around in strength. > > Jim seems to have gained strength. He is > > practically back to where he was in November > before > > he was hospitalized. This up and down roller > coaster > > is giving me motion sickness. I am elated that > Jim's > > strength has picked up again, but who knows what > > lurks around the corner. LBD is the strangest > > disease to deal with. You never know what you're > > dealing with from hour to hour, day to day, week > to > > week....... > > Things can change so fast with this disease. > There > > is no pattern or stages to follow. Every LO is so > > different in their journey. Most have similar > > symptoms and behaviors, yet at different phases of > > their disease. I just enjoy and cherish each day > > with Jim that I can. I am still fortunate that Jim > > can talk. Most of the time, he makes no sense, but > > when he gets up in the morning around 9AM until > > around noon time, he is crystal clear, after that > he > > mumbles and gets into a whispery voice and usually > > makes no sense if you can make out what he is > > saying. Jim has Parkinson's Dementia. He was > > diagnosed in the early 90s with Parkinsons. When > the > > dementia showed up, the picture was clear to the > > neurologist that it was an LBD Disease. The > > dementia started showing up big time in 2000, so > > with the combination of the Parkinsons/ Dementia, > he > > is going on his 7th year now. > > Take Care Dena..........Hugs, Jan > > > > Sandie and wrote: > > Hi Dena- > > > > I remember allowing a good 2 weeks when a change > > came about to see if my dad was going through a > > fluctuation or progression. I am sad to read that > > your > > mom has progressed in her journey. It is > comforting > > to know your mom is comfortable unless moved. > > Please keep us updated. > > > > Take care of yourself, stay strong, and you are > > always in our thoughts and prayers- > > > === message truncated === ________________________________________________________________________________\ ____ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Yahoo! Games. http://videogames.yahoo.com/platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Dena, Please know that I fully understand what you feeling. We have to think about what's best for them, and not for us. It was a gentle reminder for me as I go through the process of moving my Mom to my home. I keep thinking I can make her better. I hope I can in some respects--feeding her healthier, organic foods and giving her vitamins/supplements to help as well, and also being there for her more often. The last thing I want to do is make her more uncomfortable or have others see her in this condition, if unncessary, as you say. By no means are you being cruel. I think you're a loving daughter who can feel that her Mom is not scared and is feeling fairly peaceful in her own world at this point. It's great that you can understand that. Norma in NY Dena LEAVITT <d_j_leavitt@yaho o.com> To Sent by: LBDcaregivers LBDcaregivers@yah cc oogroups.com Subject Re: Dena 03/22/2007 05:45 PM Please respond to LBDcaregivers@yah oogroups.com Hi Norma To be honest, I am not sure I really want her to be more cognitively with it. She has settled into the the place where she is now and if she comes around more she may really hate where she is. My mom was a very brilliant woman and would dress perfectly and never wanted anyone to see her not totally put together with make up etc... Don't get me wrong. I really miss not having a conversation or at least part of one with her. I would love for myself to be able to talk to her. But... is that the best for her at this point? Her feet have dropped and arms are drawn up and I don't believe that can be reversed. She would be unable to stand or walk. On some level I think it is better for her not to be aware of what is going on. I really am not being cruel. She is just comfortable in her own world and rarely seems frightened or scared. She is only in pain when moved and that will always continue. And getting a Geriatric Dr. to the NH might take some doing. I am not sure about that. I have not tried to do that yet. Anyway, something to consider and think about. I will keep it in mind. Thanks, Norma Dena in So CA Mother (84) Living with LBD in NH --- Norma Loeb/CORPHQ/NYTIMES wrote: > > Dena, > > I'm so sorry to hear what you're going through. I > can feel for you in that > my Mom is the same age as yours. She eats well > also, but I don't think > she's gaining weight. I am so thankful, though, > that she still knows me > and can answer a question now and then. It must be > heartbreaking. I'm > going to a new neurologist next week and am going to > ask about trying her > on Exelon now. In listening to what has said, > I want to try whatever > I can. Do you think this could possibly be an > option? I know everyone > reacts differently and I also know that it may not > help, but who really > knows? > > My thoughts are with you, Norma > > > > > > Dena LEAVITT > > <d_j_leavitt@yaho > > o.com> > To > Sent by: > LBDcaregivers > LBDcaregivers@yah > cc > oogroups.com > > > Subject > Re: > Dena > 03/21/2007 07:47 > > PM > > > > > > Please respond to > > LBDcaregivers@yah > > oogroups.com > > > > > > > > > > > > > Hi Jan > > I guess what I mean by doing well is..... She is > gaining weight. Eats well. I do not think she is > stronger by any means. But as far as cognitive > abilities she is slipping even further than before, > if > that is possible. She has not made sense for over a > year now. She has answered questions only > occasionally > and that has not happened for several months now. > When > she was taken off her meds she just went into this > dark hole and has never come out. When I spoke to > the > Geriatric Dr. about this they commented that this > does > happen some times. I blame the Hospice Dr. He just > ordered her off of all of these meds when he > probably > knew very little about the disease. And I am to > blame > also. I just blindly followed instead of doing more > research. Having said all that, I do feel that in a > way this is the best thing to have had happened to > her. She does not know where she is or what is going > on. She would hate to know that she is living like > this. She hated knowing what was happening to her in > the begining. Unless moved she is content with her > world as it is. She hates to be touched too. She > jumps > ever time I try to hold her hand or stroke her hair. > As if I was going to hit her. I do not think she is > being abused in the NH. So is it the Parkinson's > part > of LBD? I am not sure I have heard that anyone else > does this, so I am just guessing at this point. It > may > be that it just hurts so much when she is touched or > moved that she anticipates the pain. She has not > walked or stood for over a year. Her arthritis has > got > to be killing her too. She is on Tylenol for pain, > but > that is it. So, I do believe that she is comfortable > where she is. I will never have to hear, " Please > take > me home " etc.. I know that that has got to be the > hardest thing to hear. I truly feel for those who > have > to hear that on every visit. It has got to be so > heart > breaking. I can't even imagine. The hardest part is > that I have no relationship at all with my Mom. I > tell > her what is going on, but get no response. I have > lost > her. It is as if I don't exist. And truly she does > not > exist either. Only the shell is left behind. But.... > I > try not to have a pity party and get all worked up > over it. You just have to go one day at a time and > live life for today only and not look too far down > that road. I have gone on for too long everyone, > sorry. > > Dena in So CA > Mother (84) Living with LBD in NH > > --- Janet Colello wrote: > > > Hi Dena, > > I just read in your March 20 post that your mom > > was doing very well and commented on it. I am > sorry > > to hear now that she is slipping away. Maybe you > > meant she was doing as well as can be for this > phase > > of her life. I misunderstood and thought she was > > coming around in strength. > > Jim seems to have gained strength. He is > > practically back to where he was in November > before > > he was hospitalized. This up and down roller > coaster > > is giving me motion sickness. I am elated that > Jim's > > strength has picked up again, but who knows what > > lurks around the corner. LBD is the strangest > > disease to deal with. You never know what you're > > dealing with from hour to hour, day to day, week > to > > week....... > > Things can change so fast with this disease. > There > > is no pattern or stages to follow. Every LO is so > > different in their journey. Most have similar > > symptoms and behaviors, yet at different phases of > > their disease. I just enjoy and cherish each day > > with Jim that I can. I am still fortunate that Jim > > can talk. Most of the time, he makes no sense, but > > when he gets up in the morning around 9AM until > > around noon time, he is crystal clear, after that > he > > mumbles and gets into a whispery voice and usually > > makes no sense if you can make out what he is > > saying. Jim has Parkinson's Dementia. He was > > diagnosed in the early 90s with Parkinsons. When > the > > dementia showed up, the picture was clear to the > > neurologist that it was an LBD Disease. The > > dementia started showing up big time in 2000, so > > with the combination of the Parkinsons/ Dementia, > he > > is going on his 7th year now. > > Take Care Dena..........Hugs, Jan > > > > Sandie and wrote: > > Hi Dena- > > > > I remember allowing a good 2 weeks when a change > > came about to see if my dad was going through a > > fluctuation or progression. I am sad to read that > > your > > mom has progressed in her journey. It is > comforting > > to know your mom is comfortable unless moved. > > Please keep us updated. > > > > Take care of yourself, stay strong, and you are > > always in our thoughts and prayers- > > > === message truncated === __________________________________________________________ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Yahoo! Games. http://videogames.yahoo.com/platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 Dena you are a remarkable woman, dealing with your mom and now iwth your aunt, here is sending you hugs and strength to get thru all of this, what is your aunts prognosis, are they going to be able to control the bleed, or will they have to do surgery, please dena take care of yourself too, hugs, sharon ---- Dena LEAVITT wrote: Hi Maggie I have DPOA for my mom. I am not sure if you do not, but we are selling her home. Escrow closes next week. I have been signing most of her documents this way: Margaret L. by Dena J. Leavitt, her attorney in fact. This seems to be the illegal way to handle matters. However, I do believe that you need the Durable Power of Attorney to sign this way. If you don't have it it might worth looking into and getting one. You may be able to print forms off the Internet and then get a notary to sign. Many notaries will come to your home for a fee, of course, if your mom is unable to get out much. My Aunt who fell and broke her hip in December and then came to live with us for 2 months has fallen again and in the hospital with head injuries this time. She has a huge black eyes and needed stitches and has bleeding near her brain that is pushing on her brain and is in CCU at Kaiser Hosp. There is a medical term for this that I won't even beginning to try and spell. The reason she is in CCU is because they had no room in ICU. So with all the Escrow, Termite, Appraisal, Home Warranty junk going on and my Aunt. I have not had even close to a chance to go look at the NH in Ontario, but I hope to soon. Has your mom started there yet? If you already said that I apologize, I am going through about 100+ emails today. I have been on in a few days. Dena in So Ca Mother (84) Living with LBD in NH --- M Sumner wrote: > Dena, > > I don't remember because i was looking into day > care, but just think, under one roof, you > can have day care, full time, assisted living > and skilled nursing. Sounds almost too good > to be true, i am impressed. > > Lots of paper work, but it is to be expected > Lots of paper her doctor has to fill out > but i am taking one day at a time. > > Keep me informed if you go or not. > > Maggie > --- Dena LEAVITT wrote: > > > Hi Maggie > > > > So glad you liked it. I was going on a > > recommendation > > only so I had no idea. I may take a look at it > > myself. > > How many patients does it have? If you can > remember > > that part. I know you were looking at the Day Care > > end. > > > > It isn't that far, I may check it out anyway. My > mom > > is in an OK place, not great. I would like > something > > better if I could get it close by. > > > > Dena in So Ca > > Mother (84) Living with LBD in NH > > > > > > > > > > > > --- M Sumner wrote: > > > > > Dena, > > > > > > Thank you so much. > > > As a matter of fact, i went for a tour > > > this friday. Found it to be very well run place. > > > > > > > > > I have so much paper work to look over that > > > i got from them. Best part is that it runs > > > in different levels, they have assisted living > > > for independent seniors, then they have another > > > area for the fully dependent senior, the day > care > > > and they even have assisted nursing living such > as > > > if > > > you were in a hospital. This place is one of > > > a kind. I was pretty impressed. I thank you > > > for suggesting it. It is far for you, but > > > one day if you are in area, it is worth taking > > > the tour. > > > > > > Sure wish we had many more like this one. > > > I not only have to go thru alot of paper work > > > but an evaluation of my mom, more pape work > > > to take to the doctor, so not that easy > > > it will take time before she can at least go > > > for day care, which is what i want for her > > > at the moment. > > > > > > Thank you for all the support > > > > > > Maggie > > > --- Dena LEAVITT wrote: > > > > > > > Hi Maggie > > > > > > > > If you are going to look in Ontario, CA I have > > > heard > > > > that Inland Christian Home is great. The > address > > > is " > > > > 1950 S. Mountain Ave. Ontario, Ca 91761 phone# > > > > . I was referred to this place by > a > > > > Kaiser > > > > nurse who told me that it is run by a Dr. He > > > started > > > > it for his mother in law or something like > that. > > I > > > > never did go as it is about 45 minutes from me > > and > > > > my > > > > mom is about 15 mins from me know. It is a > > > > Non-Contract Custodial facility, so other > people > > > > would > > > > be able to go too. Just a suggestion, you > might > > > want > > > > to check it out since you will be in the area. > I > > > > have > > > > not seen it, this is just what I have heard. > > Hope > > > > you > > > > find a good place. > > > > > > > > Dena in So Ca > > > > Mother (84) Living with LBD in NH > > > > > > > > > > > > > > > > > > > > --- M Sumner wrote: > > > > > > > > > Thank you for your e mail > > > > > Such good information, what would i do > > > > > without this support group. > > > > > > > > > > But i found another NH i am going to visit > > > > > located in Ontario, California. > > > > > > > > > > The last nh i spoke about in Walnut > > > > > I am already having a little problem with > > > > > meals, my mom got open face turkey sandwich > > > > > and that was it. My mother is into a full > > > > > home cooked meal, not a sandwhich, you can > > > > > eat a sandwhich in case of emergency in my > > > > > family, but we eat warm home cooked meal and > > > > > it seems they probably don't want to dirty > > > > > kitchen, and that is why the place looks so > > > > > clean and never a smell of food. > > > > > > > > > > Keep lots of information coming, we need > > > > > the help. > > > > > > > > > > Maggie > > > > > --- Donna Mido wrote: > > > > > > > > > > > Lin, > > > > > > > > > > > > How I wish all nh's, private or NFP were > > like > > > > > yours. > > > > > > It would save so much heart ache. I do > > > believe > > > > > > there are some out there like yours. I > wish > > > > they > > > > > > were all that way. > > > > > > Did you tell us where you are located? I > > > think > > > > I > > > > > > should know that and there might be others > > > here > > > > > who > > > > > > would like to know. > > > > > > > > > > > > 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. > > > > > > > > > > > > > > > > > > Maggie and others > > re > > > > NHs > > > > > > > > > > > > Hi everyone - > > > > > > Could I jump into the NH discussion > > briefly? > > > > > Some > > > > > > of you know I work for a non-profit, > > > faith-based > > > > > > senior care org that includes a NH and > other > > > > > senior > > > > > > facilities. Our " contract " is 10 pages: it > > > > > describes > > > > > > what we will provide; the definitions of > all > > > > legal > > > > > > language used; how payments will be made > and > === message truncated === ________________________________________________________________________________\ ____ Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 -- 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...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 Hi Sharon You know the old saying " When it rains it pours " ? Well it's true. But I am hanging in there, no other place to go! Thanks for your kind words Sharon. I think the bleed is actually a little better today. They put in a filter for the blood clot in her leg today. She is still in CCU. Not sure what is going on tomorrow. I think they may move her soon. Dena in So Ca Mother (84) Living with LBD in NH --- LadySmilingAtU2@... wrote: > Dena > you are a remarkable woman, dealing with your mom > and now iwth your aunt, here is sending you hugs > and strength to get thru all of this, what is your > aunts prognosis, are they going to be able to > control the bleed, or will they have to do surgery, > please dena take care of yourself too, hugs, > sharon > ---- Dena LEAVITT wrote: > Hi Maggie > > I have DPOA for my mom. I am not sure if you do not, > but we are selling her home. Escrow closes next > week. > I have been signing most of her documents this way: > Margaret L. by Dena J. Leavitt, her attorney > in > fact. This seems to be the illegal way to handle > matters. However, I do believe that you need the > Durable Power of Attorney to sign this way. If you > don't have it it might worth looking into and > getting > one. You may be able to print forms off the Internet > and then get a notary to sign. Many notaries will > come > to your home for a fee, of course, if your mom is > unable to get out much. > > My Aunt who fell and broke her hip in December and > then came to live with us for 2 months has fallen > again and in the hospital with head injuries this > time. She has a huge black eyes and needed stitches > and has bleeding near her brain that is pushing on > her > brain and is in CCU at Kaiser Hosp. There is a > medical > term for this that I won't even beginning to try and > spell. The reason she is in CCU is because they had > no > room in ICU. > > So with all the Escrow, Termite, Appraisal, Home > Warranty junk going on and my Aunt. I have not had > even close to a chance to go look at the NH in > Ontario, but I hope to soon. Has your mom started > there yet? If you already said that I apologize, I > am > going through about 100+ emails today. I have been > on > in a few days. > > Dena in So Ca > Mother (84) Living with LBD in NH > > --- M Sumner wrote: > > > Dena, > > > > I don't remember because i was looking into day > > care, but just think, under one roof, you > > can have day care, full time, assisted living > > and skilled nursing. Sounds almost too good > > to be true, i am impressed. > > > > Lots of paper work, but it is to be expected > > Lots of paper her doctor has to fill out > > but i am taking one day at a time. > > > > Keep me informed if you go or not. > > > > Maggie > > --- Dena LEAVITT wrote: > > > > > Hi Maggie > > > > > > So glad you liked it. I was going on a > > > recommendation > > > only so I had no idea. I may take a look at it > > > myself. > > > How many patients does it have? If you can > > remember > > > that part. I know you were looking at the Day > Care > > > end. > > > > > > It isn't that far, I may check it out anyway. My > > mom > > > is in an OK place, not great. I would like > > something > > > better if I could get it close by. > > > > > > Dena in So Ca > > > Mother (84) Living with LBD in NH > > > > > > > > > > > > > > > > > > --- M Sumner wrote: > > > > > > > Dena, > > > > > > > > Thank you so much. > > > > As a matter of fact, i went for a tour > > > > this friday. Found it to be very well run > place. > > > > > > > > > > > > I have so much paper work to look over that > > > > i got from them. Best part is that it runs > > > > in different levels, they have assisted living > > > > for independent seniors, then they have > another > > > > area for the fully dependent senior, the day > > care > > > > and they even have assisted nursing living > such > > as > > > > if > > > > you were in a hospital. This place is one of > > > > a kind. I was pretty impressed. I thank you > > > > for suggesting it. It is far for you, but > > > > one day if you are in area, it is worth taking > > > > the tour. > > > > > > > > Sure wish we had many more like this one. > > > > I not only have to go thru alot of paper work > > > > but an evaluation of my mom, more pape work > > > > to take to the doctor, so not that easy > > > > it will take time before she can at least go > > > > for day care, which is what i want for her > > > > at the moment. > > > > > > > > Thank you for all the support > > > > > > > > Maggie > > > > --- Dena LEAVITT > wrote: > > > > > > > > > Hi Maggie > > > > > > > > > > If you are going to look in Ontario, CA I > have > > > > heard > > > > > that Inland Christian Home is great. The > > address > > > > is " > > > > > 1950 S. Mountain Ave. Ontario, Ca 91761 > phone# > > > > > . I was referred to this place > by > > a > > > > > Kaiser > > > > > nurse who told me that it is run by a Dr. He > > > > started > > > > > it for his mother in law or something like > > that. > > > I > > > > > never did go as it is about 45 minutes from > me > > > and > > > > > my > > > > > mom is about 15 mins from me know. It is a > > > > > Non-Contract Custodial facility, so other > > people > > > > > would > > > > > be able to go too. Just a suggestion, you > > might > > > > want > > > > > to check it out since you will be in the > area. > > I > > > > > have > > > > > not seen it, this is just what I have heard. > > > Hope > > > > > you > > > > > find a good place. > > > > > > > > > > Dena in So Ca > > > > > Mother (84) Living with LBD in NH > > > > > > > > > > > > > > > > > > > > > > > > > --- M Sumner wrote: > > > > > > > > > > > Thank you for your e mail > > > > > > Such good information, what would i do > > > > > > without this support group. > > > > > > > > > > > > But i found another NH i am going to visit > > > > > > located in Ontario, California. > > > > > > > > > > > > The last nh i spoke about in Walnut > > > > > > I am already having a little problem with > > > > > > meals, my mom got open face turkey > sandwich > > > > > > and that was it. My mother is into a full > > > > > > home cooked meal, not a sandwhich, you can > > > > > > eat a sandwhich in case of emergency in my > > > > > > family, but we eat warm home cooked meal > and > === message truncated === ________________________________________________________________________________\ ____ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 hi dena i completely understand the when it rains it pours theory, there used to be a law called murphys law, about 11 years ago it was changed to my maiden name, andersen law but now that donnie and i have been marrid for 3 years it is andersen-murray law. so i can totlally relate, but please do not forget to take care of yourself, and i am glad to hear the bleed is clotting now. hugs, sharon ---- Dena LEAVITT wrote: Hi Sharon You know the old saying " When it rains it pours " ? Well it's true. But I am hanging in there, no other place to go! Thanks for your kind words Sharon. I think the bleed is actually a little better today. They put in a filter for the blood clot in her leg today. She is still in CCU. Not sure what is going on tomorrow. I think they may move her soon. Dena in So Ca Mother (84) Living with LBD in NH --- LadySmilingAtU2@... wrote: > Dena > you are a remarkable woman, dealing with your mom > and now iwth your aunt, here is sending you hugs > and strength to get thru all of this, what is your > aunts prognosis, are they going to be able to > control the bleed, or will they have to do surgery, > please dena take care of yourself too, hugs, > sharon > ---- Dena LEAVITT wrote: > Hi Maggie > > I have DPOA for my mom. I am not sure if you do not, > but we are selling her home. Escrow closes next > week. > I have been signing most of her documents this way: > Margaret L. by Dena J. Leavitt, her attorney > in > fact. This seems to be the illegal way to handle > matters. However, I do believe that you need the > Durable Power of Attorney to sign this way. If you > don't have it it might worth looking into and > getting > one. You may be able to print forms off the Internet > and then get a notary to sign. Many notaries will > come > to your home for a fee, of course, if your mom is > unable to get out much. > > My Aunt who fell and broke her hip in December and > then came to live with us for 2 months has fallen > again and in the hospital with head injuries this > time. She has a huge black eyes and needed stitches > and has bleeding near her brain that is pushing on > her > brain and is in CCU at Kaiser Hosp. There is a > medical > term for this that I won't even beginning to try and > spell. The reason she is in CCU is because they had > no > room in ICU. > > So with all the Escrow, Termite, Appraisal, Home > Warranty junk going on and my Aunt. I have not had > even close to a chance to go look at the NH in > Ontario, but I hope to soon. Has your mom started > there yet? If you already said that I apologize, I > am > going through about 100+ emails today. I have been > on > in a few days. > > Dena in So Ca > Mother (84) Living with LBD in NH > > --- M Sumner wrote: > > > Dena, > > > > I don't remember because i was looking into day > > care, but just think, under one roof, you > > can have day care, full time, assisted living > > and skilled nursing. Sounds almost too good > > to be true, i am impressed. > > > > Lots of paper work, but it is to be expected > > Lots of paper her doctor has to fill out > > but i am taking one day at a time. > > > > Keep me informed if you go or not. > > > > Maggie > > --- Dena LEAVITT wrote: > > > > > Hi Maggie > > > > > > So glad you liked it. I was going on a > > > recommendation > > > only so I had no idea. I may take a look at it > > > myself. > > > How many patients does it have? If you can > > remember > > > that part. I know you were looking at the Day > Care > > > end. > > > > > > It isn't that far, I may check it out anyway. My > > mom > > > is in an OK place, not great. I would like > > something > > > better if I could get it close by. > > > > > > Dena in So Ca > > > Mother (84) Living with LBD in NH > > > > > > > > > > > > > > > > > > --- M Sumner wrote: > > > > > > > Dena, > > > > > > > > Thank you so much. > > > > As a matter of fact, i went for a tour > > > > this friday. Found it to be very well run > place. > > > > > > > > > > > > I have so much paper work to look over that > > > > i got from them. Best part is that it runs > > > > in different levels, they have assisted living > > > > for independent seniors, then they have > another > > > > area for the fully dependent senior, the day > > care > > > > and they even have assisted nursing living > such > > as > > > > if > > > > you were in a hospital. This place is one of > > > > a kind. I was pretty impressed. I thank you > > > > for suggesting it. It is far for you, but > > > > one day if you are in area, it is worth taking > > > > the tour. > > > > > > > > Sure wish we had many more like this one. > > > > I not only have to go thru alot of paper work > > > > but an evaluation of my mom, more pape work > > > > to take to the doctor, so not that easy > > > > it will take time before she can at least go > > > > for day care, which is what i want for her > > > > at the moment. > > > > > > > > Thank you for all the support > > > > > > > > Maggie > > > > --- Dena LEAVITT > wrote: > > > > > > > > > Hi Maggie > > > > > > > > > > If you are going to look in Ontario, CA I > have > > > > heard > > > > > that Inland Christian Home is great. The > > address > > > > is " > > > > > 1950 S. Mountain Ave. Ontario, Ca 91761 > phone# > > > > > . I was referred to this place > by > > a > > > > > Kaiser > > > > > nurse who told me that it is run by a Dr. He > > > > started > > > > > it for his mother in law or something like > > that. > > > I > > > > > never did go as it is about 45 minutes from > me > > > and > > > > > my > > > > > mom is about 15 mins from me know. It is a > > > > > Non-Contract Custodial facility, so other > > people > > > > > would > > > > > be able to go too. Just a suggestion, you > > might > > > > want > > > > > to check it out since you will be in the > area. > > I > > > > > have > > > > > not seen it, this is just what I have heard. > > > Hope > > > > > you > > > > > find a good place. > > > > > > > > > > Dena in So Ca > > > > > Mother (84) Living with LBD in NH > > > > > > > > > > > > > > > > > > > > > > > > > --- M Sumner wrote: > > > > > > > > > > > Thank you for your e mail > > > > > > Such good information, what would i do > > > > > > without this support group. > > > > > > > > > > > > But i found another NH i am going to visit > > > > > > located in Ontario, California. > > > > > > > > > > > > The last nh i spoke about in Walnut > > > > > > I am already having a little problem with > > > > > > meals, my mom got open face turkey > sandwich > > > > > > and that was it. My mother is into a full > > > > > > home cooked meal, not a sandwhich, you can > > > > > > eat a sandwhich in case of emergency in my > > > > > > family, but we eat warm home cooked meal > and > === message truncated === ________________________________________________________________________________\ ____ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow -- 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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