Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 As one who has recently lost her husband to Lewy's, I second what Nan said. However, as one who also has a mixture of believers, agnotics and atheists in the family, allow me to say this: Whether you believe in a higher power or not, you cannot argue with the Bible verse which says that man is like a passing shadow. We are here for a time only. We are born, live and we all must die. The question is how we live and how we will be taken out of this life. LBD is but one way some leave this world, others are taken by accident, cancer or any number of diseases that afflict our bodies. A fortunate few die quietly in their sleep after a full, active life. As a Christian, I am pragmatic about death in all its forms because I don't believe that death is the end, but a new beginning. However, I respect the fact that this group has brought together people of many backgrounds and beliefs who are fighting a common enemy. Regardless of beliefs, we are here to support you, to listen, to give helpful advice, and most of all, to grieve with you as you fight this battle. I am sure you aren't the only atheist in the group, but even if you are, you are loved and accepted for who you are and where you are along life's journey and this ugly battle you are facing with this dreadful disease. Even for we believers, it is no fun. There were days when I was very angry about the whole thing and other days when it was much better. That's the roller coaster I was on and I accepted each day as a new one on the journey. Bless you, honey, for all you are doing for your loved one. Cassie To: LBDcaregivers From: nandelfisch@... Date: Fri, 30 Dec 2011 05:50:05 +0000 Subject: Re: this list We have all fought the good fight with Lewy, and while our LO's show some temporary lightening of the symptoms, eventually we all come to the realization that we can go the distance with Lewy, but he wins in the end. Until medical research comes up with something, there are only meds that help for awhile. None of us have laid down and just given up...we have all fought. But keep your hope...and keep your fight. It will help you to know that you have done everything possible for your LO. Nan > > Dear people, > > I deeply commiserate with all on the list who lost their loved ones, but > where are the messages about trying to improve? Or do you feel this is all > about deterioration and praying much (I'm an atheist). > > Olga > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 Amen Subject: RE: Re: this list To: lbdcaregivers Date: Friday, December 30, 2011, 11:33 AM As one who has recently lost her husband to Lewy's, I second what Nan said. However, as one who also has a mixture of believers, agnotics and atheists in the family, allow me to say this: Whether you believe in a higher power or not, you cannot argue with the Bible verse which says that man is like a passing shadow. We are here for a time only. We are born, live and we all must die. The question is how we live and how we will be taken out of this life. LBD is but one way some leave this world, others are taken by accident, cancer or any number of diseases that afflict our bodies. A fortunate few die quietly in their sleep after a full, active life. As a Christian, I am pragmatic about death in all its forms because I don't believe that death is the end, but a new beginning. However, I respect the fact that this group has brought together people of many backgrounds and beliefs who are fighting a common enemy. Regardless of beliefs, we are here to support you, to listen, to give helpful advice, and most of all, to grieve with you as you fight this battle. I am sure you aren't the only atheist in the group, but even if you are, you are loved and accepted for who you are and where you are along life's journey and this ugly battle you are facing with this dreadful disease. Even for we believers, it is no fun. There were days when I was very angry about the whole thing and other days when it was much better. That's the roller coaster I was on and I accepted each day as a new one on the journey. Bless you, honey, for all you are doing for your loved one. Cassie To: LBDcaregivers From: nandelfisch@... Date: Fri, 30 Dec 2011 05:50:05 +0000 Subject: Re: this list We have all fought the good fight with Lewy, and while our LO's show some temporary lightening of the symptoms, eventually we all come to the realization that we can go the distance with Lewy, but he wins in the end. Until medical research comes up with something, there are only meds that help for awhile. None of us have laid down and just given up...we have all fought. But keep your hope...and keep your fight. It will help you to know that you have done everything possible for your LO. Nan > > Dear people, > > I deeply commiserate with all on the list who lost their loved ones, but > where are the messages about trying to improve? Or do you feel this is all > about deterioration and praying much (I'm an atheist). > > Olga > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 Amen! Beautifully said! Helene in NY " Maturity is the capacity to endure uncertainty. " - Finley >________________________________ > >To: lbdcaregivers >Sent: Friday, December 30, 2011 11:33 AM >Subject: RE: Re: this list > >As one who has recently lost her husband to Lewy's, I second what Nan said. However, as one who also has a mixture of believers, agnotics and atheists in the family, allow me to say this: Whether you believe in a higher power or not, you cannot argue with the Bible verse which says that man is like a passing shadow. We are here for a time only. We are born, live and we all must die. The question is how we live and how we will be taken out of this life. LBD is but one way some leave this world, others are taken by accident, cancer or any number of diseases that afflict our bodies. A fortunate few die quietly in their sleep after a full, active life. As a Christian, I am pragmatic about death in all its forms because I don't believe that death is the end, but a new beginning. However, I respect the fact that this group has brought together people of many backgrounds and beliefs who are fighting a common enemy. Regardless of beliefs, we are here to support you, to listen, to give helpful advice, and most of all, to grieve with you as you fight this battle. I am sure you aren't the only atheist in the group, but even if you are, you are loved and accepted for who you are and where you are along life's journey and this ugly battle you are facing with this dreadful disease. Even for we believers, it is no fun. There were days when I was very angry about the whole thing and other days when it was much better. That's the roller coaster I was on and I accepted each day as a new one on the journey. > >Bless you, honey, for all you are doing for your loved one. > >Cassie > >To: LBDcaregivers >From: nandelfisch@... >Date: Fri, 30 Dec 2011 05:50:05 +0000 >Subject: Re: this list > > > > > > > > > > > > > > > > > > > > > > > > > We have all fought the good fight with Lewy, and while our LO's show some temporary lightening of the symptoms, eventually we all come to the realization that we can go the distance with Lewy, but he wins in the end. Until medical research comes up with something, there are only meds that help for awhile. None of us have laid down and just given up...we have all fought. But keep your hope...and keep your fight. It will help you to know that you have done everything possible for your LO. Nan > > > > > >> > >> Dear people, > >> > >> I deeply commiserate with all on the list who lost their loved ones, but > >> where are the messages about trying to improve? Or do you feel this is all > >> about deterioration and praying much (I'm an atheist). > >> > >> Olga > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 Hello Olga and others: LBD is quite a long fight! My husband was dx with PD, but after several years finally went to the Cleveland Clinic and got a better dx of LBD. This fits him much better than just PD. Is this any fun, no! Is there a cure, no! Is there hope, yes! Hope of more better days and not! Hope that the right combination of meds helps, not hinders. I have seen my husband with wrong meds, and it was awful. Are we giving up, no! Am I trying to help my husband to best of my ability, YES! Has this site and the LBD facebook been helpful, Yes! Does prayer help, yes it does! Does this LBD deteriorate our loved one, yes! Do I have to like it, no! My prayer to God is: " I know that you won't give me more than I can handle, but please help me handle what I have! " Maybe some of you might agree, or not. Vivian (husband dx with LBD Jan 2010, been trying to figure out what it was since 2003) > ** > > > Amen! Beautifully said! > Helene in NY > > > > " Maturity is the capacity to endure uncertainty. " > - Finley > > >________________________________ > > > >To: lbdcaregivers > >Sent: Friday, December 30, 2011 11:33 AM > > >Subject: RE: Re: this list > > > >As one who has recently lost her husband to Lewy's, I second what Nan > said. However, as one who also has a mixture of believers, agnotics and > atheists in the family, allow me to say this: Whether you believe in a > higher power or not, you cannot argue with the Bible verse which says that > man is like a passing shadow. We are here for a time only. We are born, > live and we all must die. The question is how we live and how we will be > taken out of this life. LBD is but one way some leave this world, others > are taken by accident, cancer or any number of diseases that afflict our > bodies. A fortunate few die quietly in their sleep after a full, active > life. As a Christian, I am pragmatic about death in all its forms because > I don't believe that death is the end, but a new beginning. However, I > respect the fact that this group has brought together people of many > backgrounds and beliefs who are fighting a common enemy. Regardless of > beliefs, we > are here to support you, to listen, to give helpful advice, and most of > all, to grieve with you as you fight this battle. I am sure you aren't the > only atheist in the group, but even if you are, you are loved and accepted > for who you are and where you are along life's journey and this ugly battle > you are facing with this dreadful disease. Even for we believers, it is no > fun. There were days when I was very angry about the whole thing and other > days when it was much better. That's the roller coaster I was on and I > accepted each day as a new one on the journey. > > > >Bless you, honey, for all you are doing for your loved one. > > > >Cassie > > > >To: LBDcaregivers > >From: nandelfisch@... > >Date: Fri, 30 Dec 2011 05:50:05 +0000 > >Subject: Re: this list > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > We have all fought the good fight with Lewy, and while our LO's > show some temporary lightening of the symptoms, eventually we all come to > the realization that we can go the distance with Lewy, but he wins in the > end. Until medical research comes up with something, there are only meds > that help for awhile. None of us have laid down and just given up...we > have all fought. But keep your hope...and keep your fight. It will help > you to know that you have done everything possible for your LO. Nan > > > > > > > > > > > >> > > > >> Dear people, > > > >> > > > >> I deeply commiserate with all on the list who lost their loved ones, but > > > >> where are the messages about trying to improve? Or do you feel this is > all > > > >> about deterioration and praying much (I'm an atheist). > > > >> > > > >> Olga > > > >> > > > >> > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 Amen, Vivian! I could not have gotten through this without prayer, daily and unceasing. My most common prayer was that God would give me wisdom each day for dealing with my husband and his condition. God certainly did that. My comments to Olga were simply to express that, regardless of belief or unbelief, you are loved and supported in this group and you WILL find answers to your questions. Cassie To: LBDcaregivers From: vivdewalt11@... Date: Sat, 31 Dec 2011 22:48:31 -0500 Subject: Re: Re: this list Hello Olga and others: LBD is quite a long fight! My husband was dx with PD, but after several years finally went to the Cleveland Clinic and got a better dx of LBD. This fits him much better than just PD. Is this any fun, no! Is there a cure, no! Is there hope, yes! Hope of more better days and not! Hope that the right combination of meds helps, not hinders. I have seen my husband with wrong meds, and it was awful. Are we giving up, no! Am I trying to help my husband to best of my ability, YES! Has this site and the LBD facebook been helpful, Yes! Does prayer help, yes it does! Does this LBD deteriorate our loved one, yes! Do I have to like it, no! My prayer to God is: " I know that you won't give me more than I can handle, but please help me handle what I have! " Maybe some of you might agree, or not. Vivian (husband dx with LBD Jan 2010, been trying to figure out what it was since 2003) > ** > > > Amen! Beautifully said! > Helene in NY > > > > " Maturity is the capacity to endure uncertainty. " > - Finley > > >________________________________ > > > >To: lbdcaregivers > >Sent: Friday, December 30, 2011 11:33 AM > > >Subject: RE: Re: this list > > > >As one who has recently lost her husband to Lewy's, I second what Nan > said. However, as one who also has a mixture of believers, agnotics and > atheists in the family, allow me to say this: Whether you believe in a > higher power or not, you cannot argue with the Bible verse which says that > man is like a passing shadow. We are here for a time only. We are born, > live and we all must die. The question is how we live and how we will be > taken out of this life. LBD is but one way some leave this world, others > are taken by accident, cancer or any number of diseases that afflict our > bodies. A fortunate few die quietly in their sleep after a full, active > life. As a Christian, I am pragmatic about death in all its forms because > I don't believe that death is the end, but a new beginning. However, I > respect the fact that this group has brought together people of many > backgrounds and beliefs who are fighting a common enemy. Regardless of > beliefs, we > are here to support you, to listen, to give helpful advice, and most of > all, to grieve with you as you fight this battle. I am sure you aren't the > only atheist in the group, but even if you are, you are loved and accepted > for who you are and where you are along life's journey and this ugly battle > you are facing with this dreadful disease. Even for we believers, it is no > fun. There were days when I was very angry about the whole thing and other > days when it was much better. That's the roller coaster I was on and I > accepted each day as a new one on the journey. > > > >Bless you, honey, for all you are doing for your loved one. > > > >Cassie > > > >To: LBDcaregivers > >From: nandelfisch@... > >Date: Fri, 30 Dec 2011 05:50:05 +0000 > >Subject: Re: this list > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > We have all fought the good fight with Lewy, and while our LO's > show some temporary lightening of the symptoms, eventually we all come to > the realization that we can go the distance with Lewy, but he wins in the > end. Until medical research comes up with something, there are only meds > that help for awhile. None of us have laid down and just given up...we > have all fought. But keep your hope...and keep your fight. It will help > you to know that you have done everything possible for your LO. Nan > > > > > > > > > > > >> > > > >> Dear people, > > > >> > > > >> I deeply commiserate with all on the list who lost their loved ones, but > > > >> where are the messages about trying to improve? Or do you feel this is > all > > > >> about deterioration and praying much (I'm an atheist). > > > >> > > > >> Olga > > > >> > > > >> > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2012 Report Share Posted January 5, 2012 Olga-- My heart breaks for you and your situation. I wish I knew more about how things work in your country (Is it Russia?) as far as health care is concerned, but I don't. I would only suggest that if 's family is causing you trouble with placing him in a home you should ask them if he can move in with them. Explain you can no longer provide care because it has become too physically difficult. I would imagine that will change their reluctance quickly.  As for his refusal to get out of bed, etc. This is a typical behavior for those with dementias (as you probably already know). They become agitated, aggressive and irritable. The part of the brain that controls behavior is diseased and no longer functions properly. I know that doesn't make it easier on your sitution, but maybe it can help you understand his " meaness " .  C    ________________________________ To: LBDcaregivers Sent: Wednesday, January 4, 2012 9:07 PM Subject: Re: this list  Dear Vivian, Great attitude. Admire your courage and optimism. Myself, I'm not managing so well. My husband doesn't want to walk... for no reason... out of the blue. When he wandered off plenty before. The bedroom involves stairs, the bathroom involves stairs, the bath involves climbing into it. He's no baby, he's heavy. We live in a rented accommodation. I can perhaps ship him off to a home (how much? plus his family are stalling for incomprehensible reasons), in which case I cannot remain in ours (too expensive). I'm now more or less running out of excuses to send him to hospital. Before I could say he used to be mobile but it's now over 2 months that by the end of the week he lies down in the bed and refuses to do anything. And any disturbance is met with hostility. And I very much doubt he knows who I am. I'm often " the nasty boy " . It's an unfortunate combination of some unfunny charade against the background of poor financial planning. So, yes, I'm mightily discouraged and depressed, but I am trying to find some type of solution. I actually do not think the way things are, they benefit either me or (my husband). I would still insist that prayers are great but practical advice/experience is better. And I don't know how mature I am, is the second demented person in my life, but I certainly dislike being that uncertain (especially on behalf of another human being), whoever Finley is. Olga > > > > > >> > > > > > >> Dear people, > > > > > >> > > > > > >> I deeply commiserate with all on the list who lost their loved ones, but > > > > > >> where are the messages about trying to improve? Or do you feel this is > > all > > > > > >> about deterioration and praying much (I'm an atheist). > > > > > >> > > > > > >> Olga > > > > > >> > > > > > >> > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Dear Olga--- Like C, my heart breaks for you and your situation. I do hope that you can get some relief. I also hope that 's family will see what is actually happening to and yourself. All of us need family to see how things are and to enlist their help. I have no ideas on how to get him out of bed, I am sorry. As for my husband, stairs are challenging for him. I get nervous sometimes if there are lots of stairs for him to climb and try to be right next to him. Yes, sometimes my husband does get upset. It seems sometimes to be more out of frustration to different situations at this stage of the game. I do hope that 's family will be more of a help to you and . Thinking of you! Vivian > ** > > > Olga-- > My heart breaks for you and your situation. I wish I knew more about how > things work in your country (Is it Russia?) as far as health care is > concerned, but I don't. I would only suggest that if 's family is > causing you trouble with placing him in a home you should ask them if he > can move in with them. Explain you can no longer provide care because it > has become too physically difficult. I would imagine that will change their > reluctance quickly. > > As for his refusal to get out of bed, etc. This is a typical behavior for > those with dementias (as you probably already know). They become agitated, > aggressive and irritable. The part of the brain that controls behavior is > diseased and no longer functions properly. I know that doesn't make it > easier on your sitution, but maybe it can help you understand his " meaness " . > > C > > > > > > ________________________________ > > To: LBDcaregivers > Sent: Wednesday, January 4, 2012 9:07 PM > > Subject: Re: this list > > > > > Dear Vivian, > > Great attitude. Admire your courage and optimism. Myself, I'm not managing > so well. My husband doesn't want to walk... for no reason... out of the > blue. When he wandered off plenty before. The bedroom involves stairs, the > bathroom involves stairs, the bath involves climbing into it. He's no baby, > he's heavy. We live in a rented accommodation. I can perhaps ship him off > to a home (how much? plus his family are stalling for incomprehensible > reasons), in which case I cannot remain in ours (too expensive). I'm now > more or less running out of excuses to send him to hospital. Before I could > say he used to be mobile but it's now over 2 months that by the end of the > week he lies down in the bed and refuses to do anything. And any > disturbance is met with hostility. And I very much doubt he knows who I am. > I'm often " the nasty boy " . It's an unfortunate combination of some unfunny > charade against the background of poor financial planning. So, yes, I'm > mightily > discouraged and depressed, but I am trying to find some type of solution. > I actually do not think the way things are, they benefit either me or > (my husband). > I would still insist that prayers are great but practical > advice/experience is better. > And I don't know how mature I am, is the second demented person in my > life, but I certainly dislike being that uncertain (especially on behalf of > another human being), whoever Finley is. > > Olga > > > > > > > > > >> > > > > > > > >> Dear people, > > > > > > > >> > > > > > > > >> I deeply commiserate with all on the list who lost their loved > ones, but > > > > > > > >> where are the messages about trying to improve? Or do you feel this > is > > > all > > > > > > > >> about deterioration and praying much (I'm an atheist). > > > > > > > >> > > > > > > > >> Olga > > > > > > > >> > > > > > > > >> > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 Olga, You have got to call social services or senior services now. The may even be able to convince your landlord to allow modifications like a chair lift for the stairs. A hoist doesn't require any home modification. And you need an aide/attendant to help with the heavy lifting. Get your doctor to help you with justifying the level of help needed. Don't hold back. Tell them everything. Kathy Kate Knapp > ** > > > Dear Vivian, > > Great attitude. Admire your courage and optimism. Myself, I'm not managing > so well. My husband doesn't want to walk... for no reason... out of the > blue. When he wandered off plenty before. The bedroom involves stairs, the > bathroom involves stairs, the bath involves climbing into it. He's no baby, > he's heavy. We live in a rented accommodation. I can perhaps ship him off > to a home (how much? plus his family are stalling for incomprehensible > reasons), in which case I cannot remain in ours (too expensive). I'm now > more or less running out of excuses to send him to hospital. Before I could > say he used to be mobile but it's now over 2 months that by the end of the > week he lies down in the bed and refuses to do anything. And any > disturbance is met with hostility. And I very much doubt he knows who I am. > I'm often " the nasty boy " . It's an unfortunate combination of some unfunny > charade against the background of poor financial planning. So, yes, I'm > mightily discouraged and depressed, but I am trying to find some type of > solution. I actually do not think the way things are, they benefit either > me or (my husband). > I would still insist that prayers are great but practical > advice/experience is better. > And I don't know how mature I am, is the second demented person in my > life, but I certainly dislike being that uncertain (especially on behalf of > another human being), whoever Finley is. > > Olga > > > > > > > > > >> > > > > > > > >> Dear people, > > > > > > > >> > > > > > > > >> I deeply commiserate with all on the list who lost their loved > ones, but > > > > > > > >> where are the messages about trying to improve? Or do you feel this > is > > > all > > > > > > > >> about deterioration and praying much (I'm an atheist). > > > > > > > >> > > > > > > > >> Olga > > > > > > > >> > > > > > > > >> > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 Olga, Where do you live? Are you in the United States or do you live in the Soviet Union, as you indicated that you are from there. You were asked before what is your husband's diagnosis on this group forum, which you have not answered here. Does he have a doctor or a diagnosis? I am beginning to think you are hiding something about yourself and or your husband. Why don't you tell us when or how he was diagnosed with Lewy Body Dementia? After all that is what this support group is about... Lewy Body Dementia. You tell us odd things like him lying in his urine soaked clothes for days and about a " feckless " carer. What is that all about? Are you caring for your husband yourself, or do you have someone else there doing it, and what is the relationship with you? This all is beginning to sound very odd to me. You have some explaining to do. These kind of statements you have made sound very odd to come from someone living in the United States. I Pat M. Wife/Caregiver of Bob, 75, dx 2003 PD 2009 LBD > Olga, > > You have got to call social services or senior services now. The may even > be able to convince your landlord to allow modifications like a chair lift > for the stairs. A hoist doesn't require any home modification. And you > need an aide/attendant to help with the heavy lifting. Get your doctor to > help you with justifying the level of help needed. Don't hold back. Tell > them everything. > > Kathy > > Kate Knapp > > >> ** >> >> >> Dear Vivian, >> >> Great attitude. Admire your courage and optimism. Myself, I'm not managing >> so well. My husband doesn't want to walk... for no reason... out of the >> blue. When he wandered off plenty before. The bedroom involves stairs, the >> bathroom involves stairs, the bath involves climbing into it. He's no baby, >> he's heavy. We live in a rented accommodation. I can perhaps ship him off >> to a home (how much? plus his family are stalling for incomprehensible >> reasons), in which case I cannot remain in ours (too expensive). I'm now >> more or less running out of excuses to send him to hospital. Before I could >> say he used to be mobile but it's now over 2 months that by the end of the >> week he lies down in the bed and refuses to do anything. And any >> disturbance is met with hostility. And I very much doubt he knows who I am. >> I'm often " the nasty boy " . It's an unfortunate combination of some unfunny >> charade against the background of poor financial planning. So, yes, I'm >> mightily discouraged and depressed, but I am trying to find some type of >> solution. I actually do not think the way things are, they benefit either >> me or (my husband). >> I would still insist that prayers are great but practical >> advice/experience is better. >> And I don't know how mature I am, is the second demented person in my >> life, but I certainly dislike being that uncertain (especially on behalf of >> another human being), whoever Finley is. >> >> Olga >> >> >> > > > >> > > >> >> > > > >> > > >> Dear people, >> > > > >> > > >> >> > > > >> > > >> I deeply commiserate with all on the list who lost their loved >> ones, but >> > > > >> > > >> where are the messages about trying to improve? Or do you feel this >> is >> > > all >> > > > >> > > >> about deterioration and praying much (I'm an atheist). >> > > > >> > > >> >> > > > >> > > >> Olga >> > > > >> > > >> >> > > > >> > > >> >> > > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 Pat, Olga and I have exchanged a couple of personal emails and I have a couple of thoughts that might help us understand. First, she is not in the U.S. The Soviet Union no longer exists, but no she is not in Russia. It is for Olga to tell you where she is. But I will tell you that she is in a country I have always considered advanced medically and socially - until about 6 months ago when I heard about troubles someone else was having in the same area. If we have any other Europeans on the list, you could be a huge help to Olga. Aussies, your advice could also help. No she is not in Australia. I've learned that we've got it pretty good in the U.S., in comparison to some very civilized countries. We also have a tendency to assume everyone is in the U.S. or has access to the same systems we do. I did the same until Olga told me where she lives. It isn't just LBD that she is struggling with. It is a lack of social service assistance and the issues all expatriots face when needing help from their adopted countries. Folks have had their dander up over this thread, as I did originally. But can we dial it down now and let Olga tell us what she is ready to share when she is ready to share it? Peace. Kathy Kate Knapp > ** > > > Olga, > Where do you live? Are you in the United States or do you live in the > Soviet Union, as you indicated that you are from there. You were > asked before what is your husband's diagnosis on this group forum, > which you have not answered here. Does he have a doctor or a > diagnosis? I am beginning to think you are hiding something about > yourself and or your husband. Why don't you tell us when or how he > was diagnosed with Lewy Body Dementia? After all that is what this > support group is about... Lewy Body Dementia. You tell us odd things > like him lying in his urine soaked clothes for days and about a > " feckless " carer. What is that all about? Are you caring for your > husband yourself, or do you have someone else there doing it, and what > is the relationship with you? This all is beginning to sound very odd > to me. You have some explaining to do. These kind of statements you > have made sound very odd to come from someone living in the United > States. I > Pat M. > Wife/Caregiver of Bob, 75, dx 2003 PD 2009 LBD > > > > Olga, > > > > You have got to call social services or senior services now. The may > even > > be able to convince your landlord to allow modifications like a chair > lift > > for the stairs. A hoist doesn't require any home modification. And you > > need an aide/attendant to help with the heavy lifting. Get your doctor > to > > help you with justifying the level of help needed. Don't hold back. > Tell > > them everything. > > > > Kathy > > > > Kate Knapp > > > > > >> ** > >> > >> > >> Dear Vivian, > >> > >> Great attitude. Admire your courage and optimism. Myself, I'm not > managing > >> so well. My husband doesn't want to walk... for no reason... out of the > >> blue. When he wandered off plenty before. The bedroom involves stairs, > the > >> bathroom involves stairs, the bath involves climbing into it. He's no > baby, > >> he's heavy. We live in a rented accommodation. I can perhaps ship him > off > >> to a home (how much? plus his family are stalling for incomprehensible > >> reasons), in which case I cannot remain in ours (too expensive). I'm now > >> more or less running out of excuses to send him to hospital. Before I > could > >> say he used to be mobile but it's now over 2 months that by the end of > the > >> week he lies down in the bed and refuses to do anything. And any > >> disturbance is met with hostility. And I very much doubt he knows who I > am. > >> I'm often " the nasty boy " . It's an unfortunate combination of some > unfunny > >> charade against the background of poor financial planning. So, yes, I'm > >> mightily discouraged and depressed, but I am trying to find some type of > >> solution. I actually do not think the way things are, they benefit > either > >> me or (my husband). > >> I would still insist that prayers are great but practical > >> advice/experience is better. > >> And I don't know how mature I am, is the second demented person in > my > >> life, but I certainly dislike being that uncertain (especially on > behalf of > >> another human being), whoever Finley is. > >> > >> Olga > >> > >> > >> > > > > >> > > >> > >> > > > > >> > > >> Dear people, > >> > > > > >> > > >> > >> > > > > >> > > >> I deeply commiserate with all on the list who lost their loved > >> ones, but > >> > > > > >> > > >> where are the messages about trying to improve? Or do you feel > this > >> is > >> > > all > >> > > > > >> > > >> about deterioration and praying much (I'm an atheist). > >> > > > > >> > > >> > >> > > > > >> > > >> Olga > >> > > > > >> > > >> > >> > > > > >> > > >> > >> > > > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 or Donna may be able to help with this. England has or maybe had an LBD support group site also, but I forget the site address and how to get to it, but it was very good as this one is a few years ago. I knew some people on it. or Donna should know the site name. If the site is still there, maybe it could help Olga more than this site if she is living in Europe. ________________________________ To: LBDcaregivers Sent: Sunday, January 8, 2012 7:10 PM Subject: Re: Re: this list Pat, Olga and I have exchanged a couple of personal emails and I have a couple of thoughts that might help us understand. First, she is not in the U.S. The Soviet Union no longer exists, but no she is not in Russia. It is for Olga to tell you where she is. But I will tell you that she is in a country I have always considered advanced medically and socially - until about 6 months ago when I heard about troubles someone else was having in the same area. If we have any other Europeans on the list, you could be a huge help to Olga. Aussies, your advice could also help. No she is not in Australia. I've learned that we've got it pretty good in the U.S., in comparison to some very civilized countries. We also have a tendency to assume everyone is in the U.S. or has access to the same systems we do. I did the same until Olga told me where she lives. It isn't just LBD that she is struggling with. It is a lack of social service assistance and the issues all expatriots face when needing help from their adopted countries. Folks have had their dander up over this thread, as I did originally. But can we dial it down now and let Olga tell us what she is ready to share when she is ready to share it? Peace. Kathy Kate Knapp > ** > > > Olga, > Where do you live? Are you in the United States or do you live in the > Soviet Union, as you indicated that you are from there. You were > asked before what is your husband's diagnosis on this group forum, > which you have not answered here. Does he have a doctor or a > diagnosis? I am beginning to think you are hiding something about > yourself and or your husband. Why don't you tell us when or how he > was diagnosed with Lewy Body Dementia? After all that is what this > support group is about... Lewy Body Dementia. You tell us odd things > like him lying in his urine soaked clothes for days and about a > " feckless " carer. What is that all about? Are you caring for your > husband yourself, or do you have someone else there doing it, and what > is the relationship with you? This all is beginning to sound very odd > to me. You have some explaining to do. These kind of statements you > have made sound very odd to come from someone living in the United > States. I > Pat M. > Wife/Caregiver of Bob, 75, dx 2003 PD 2009 LBD > > > > Olga, > > > > You have got to call social services or senior services now. The may > even > > be able to convince your landlord to allow modifications like a chair > lift > > for the stairs. A hoist doesn't require any home modification. And you > > need an aide/attendant to help with the heavy lifting. Get your doctor > to > > help you with justifying the level of help needed. Don't hold back. > Tell > > them everything. > > > > Kathy > > > > Kate Knapp > > > > > >> ** > >> > >> > >> Dear Vivian, > >> > >> Great attitude. Admire your courage and optimism. Myself, I'm not > managing > >> so well. My husband doesn't want to walk... for no reason... out of the > >> blue. When he wandered off plenty before. The bedroom involves stairs, > the > >> bathroom involves stairs, the bath involves climbing into it. He's no > baby, > >> he's heavy. We live in a rented accommodation. I can perhaps ship him > off > >> to a home (how much? plus his family are stalling for incomprehensible > >> reasons), in which case I cannot remain in ours (too expensive). I'm now > >> more or less running out of excuses to send him to hospital. Before I > could > >> say he used to be mobile but it's now over 2 months that by the end of > the > >> week he lies down in the bed and refuses to do anything. And any > >> disturbance is met with hostility. And I very much doubt he knows who I > am. > >> I'm often " the nasty boy " . It's an unfortunate combination of some > unfunny > >> charade against the background of poor financial planning. So, yes, I'm > >> mightily discouraged and depressed, but I am trying to find some type of > >> solution. I actually do not think the way things are, they benefit > either > >> me or (my husband). > >> I would still insist that prayers are great but practical > >> advice/experience is better. > >> And I don't know how mature I am, is the second demented person in > my > >> life, but I certainly dislike being that uncertain (especially on > behalf of > >> another human being), whoever Finley is. > >> > >> Olga > >> > >> > >> > > > > >> > > >> > >> > > > > >> > > >> Dear people, > >> > > > > >> > > >> > >> > > > > >> > > >> I deeply commiserate with all on the list who lost their loved > >> ones, but > >> > > > > >> > > >> where are the messages about trying to improve? Or do you feel > this > >> is > >> > > all > >> > > > > >> > > >> about deterioration and praying much (I'm an atheist). > >> > > > > >> > > >> > >> > > > > >> > > >> Olga > >> > > > > >> > > >> > >> > > > > >> > > >> > >> > > > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2012 Report Share Posted January 9, 2012 Thank you , that's the one I was thinking of : ) ________________________________ To: LBDcaregivers Sent: Monday, January 9, 2012 3:17 AM Subject: Re: this list Janet - you're referring to the Lewy Body Society in the UK -- their website is this: http://www.lewybody.co.uk/ > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> Dear people, > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> I deeply commiserate with all on the list who lost their loved > > >> ones, but > > >> > > > > > >> > > >> where are the messages about trying to improve? Or do you feel > > this > > >> is > > >> > > all > > >> > > > > > >> > > >> about deterioration and praying much (I'm an atheist). > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> Olga > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Hello everyone. Today the oncologist suggested a round of heavy steroids to see if it will have an effect on john's kidneys. Forty mg(?) for 4 days straight. Does anyone know if steroids can make Lewy even worse?? has never hallucinated, but this much steroids can cause that in general. Then a targeted chemo, Veltrane(?). The md is not to confident can tolerate either chemo or steroids. I'm contacting our neurologist but does anyone have experience or any thoughts on this. The prognosis is pretty dire....thanks in advance for your help. W. Sent from my iPhone > Thank you , that's the one I was thinking of : ) > > ________________________________ > > To: LBDcaregivers > Sent: Monday, January 9, 2012 3:17 AM > Subject: Re: this list > > Janet - you're referring to the Lewy Body Society in the UK -- their website is this: > http://www.lewybody.co.uk/ > > > > > > > >> > > > > >> > > ** > > > >> > > > > > >> > > > > > >> > > Amen! Beautifully said! > > > >> > > Helene in NY > > > >> > > > > > >> > > > > > >> > > > > > >> > > " Maturity is the capacity to endure uncertainty. " > > > >> > > - Finley > > > >> > > > > > >> > > >________________________________ > > > >> > > > From: Cassie Levy <pudeluv22@> > > > >> > > >To: lbdcaregivers > > > >> > > >Sent: Friday, December 30, 2011 11:33 AM > > > >> > > > > > >> > > >Subject: RE: Re: this list > > > >> > > > > > > >> > > >As one who has recently lost her husband to Lewy's, I second what > > > Nan > > > >> > > said. However, as one who also has a mixture of believers, agnotics > > > and > > > >> > > atheists in the family, allow me to say this: Whether you believe > > > in a > > > >> > > higher power or not, you cannot argue with the Bible verse which > > > says > > > >> that > > > >> > > man is like a passing shadow. We are here for a time only. We are > > > born, > > > >> > > live and we all must die. The question is how we live and how we > > > will > > > >> be > > > >> > > taken out of this life. LBD is but one way some leave this world, > > > >> others > > > >> > > are taken by accident, cancer or any number of diseases that afflict > > > >> our > > > >> > > bodies. A fortunate few die quietly in their sleep after a full, > > > active > > > >> > > life. As a Christian, I am pragmatic about death in all its forms > > > >> because > > > >> > > I don't believe that death is the end, but a new beginning. > > > However, I > > > >> > > respect the fact that this group has brought together people of many > > > >> > > backgrounds and beliefs who are fighting a common enemy. Regardless > > > of > > > >> > > beliefs, we > > > >> > > are here to support you, to listen, to give helpful advice, and > > > most of > > > >> > > all, to grieve with you as you fight this battle. I am sure you > > > aren't > > > >> the > > > >> > > only atheist in the group, but even if you are, you are loved and > > > >> accepted > > > >> > > for who you are and where you are along life's journey and this ugly > > > >> battle > > > >> > > you are facing with this dreadful disease. Even for we believers, it > > > >> is no > > > >> > > fun. There were days when I was very angry about the whole thing and > > > >> other > > > >> > > days when it was much better. That's the roller coaster I was on > > > and I > > > >> > > accepted each day as a new one on the journey. > > > >> > > > > > > >> > > >Bless you, honey, for all you are doing for your loved one. > > > >> > > > > > > >> > > >Cassie > > > >> > > > > > > >> > > >To: LBDcaregivers > > > >> > > >From: nandelfisch@ > > > >> > > >Date: Fri, 30 Dec 2011 05:50:05 +0000 > > > >> > > >Subject: Re: this list > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > We have all fought the good fight with Lewy, and while our LO's > > > >> > > show some temporary lightening of the symptoms, eventually we all > > > come > > > >> to > > > >> > > the realization that we can go the distance with Lewy, but he wins > > > in > > > >> the > > > >> > > end. Until medical research comes up with something, there are only > > > >> meds > > > >> > > that help for awhile. None of us have laid down and just given > > > up...we > > > >> > > have all fought. But keep your hope...and keep your fig Quote Link to comment Share on other sites More sharing options...
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