Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Dear Lori, I am so sorry to hear of the passing of your dad. You remind me a lot of what we went through. I, too, was very close to my dad. My dad's passing was also unexpectedly. They had placed a breathing tube and just the day before of him passing his doctor told me he was doing so well they were thinking of removing the tube in a few days. Imagine my shock! I was devastated!!! I'm not sure if you went through the same remorse as I did, but I had no choice but to put my dad in a nursing home because my mom is up there in age and has her own health issues. She couldn't care for him, physically. I was full of guilt! I always said I would never put my parents in a nursing home, but I really didn't have a choice. I work full time. Medicare/Medicaid would only pay for a nurse to be at their home for 4 hours, but were willing to pay a nursing home, full time. Go figure! Aarrrgggghhhh! I would travel over an hour, both directions, every day after work and stay with him until evening and spent all day Saturdays and Sundays so I do understand how exhausting it can be! Please take time for yourself now. It will be hard at the beginning, but it does get a little easier with time. Soon you'll be remembering the good, funny, happy times and the bad ones….. not so much. Sending you heartfelt hugs! from NYC Daughter of Celestino (Tino) Suarez Misdiagnosed for years. Diagnosed with LBD March 2009, but we now know he's had it for at least 4-5 years. God called him home on October 27, 2009. Rest in peace, Daddy. (January 29, 1930 - October 27, 2009) > > I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > > Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > > Sincerely, > Lori > > ~~~~~~~~~~~~~~~~~~~~~~~~ > > It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > > > www.aldf.org > www.ifaw.org > www.fundforanimals.org > www.oceanconservancy.org > www.aspca.org > www.ddal.org > www.greenpeace.org > www.nrdc.org > www.pcrm.org > www.edf.org > www.ncpa.org > www.audobon.org > www.bestfriends.org > www.nwf.org > www.wwf.org > www.defenders.org > www.nature.org > www.nhes.org > www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Dear Lori, I am so sorry to hear of the passing of your dad. You remind me a lot of what we went through. I, too, was very close to my dad. My dad's passing was also unexpectedly. They had placed a breathing tube and just the day before of him passing his doctor told me he was doing so well they were thinking of removing the tube in a few days. Imagine my shock! I was devastated!!! I'm not sure if you went through the same remorse as I did, but I had no choice but to put my dad in a nursing home because my mom is up there in age and has her own health issues. She couldn't care for him, physically. I was full of guilt! I always said I would never put my parents in a nursing home, but I really didn't have a choice. I work full time. Medicare/Medicaid would only pay for a nurse to be at their home for 4 hours, but were willing to pay a nursing home, full time. Go figure! Aarrrgggghhhh! I would travel over an hour, both directions, every day after work and stay with him until evening and spent all day Saturdays and Sundays so I do understand how exhausting it can be! Please take time for yourself now. It will be hard at the beginning, but it does get a little easier with time. Soon you'll be remembering the good, funny, happy times and the bad ones….. not so much. Sending you heartfelt hugs! from NYC Daughter of Celestino (Tino) Suarez Misdiagnosed for years. Diagnosed with LBD March 2009, but we now know he's had it for at least 4-5 years. God called him home on October 27, 2009. Rest in peace, Daddy. (January 29, 1930 - October 27, 2009) > > I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > > Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > > Sincerely, > Lori > > ~~~~~~~~~~~~~~~~~~~~~~~~ > > It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > > > www.aldf.org > www.ifaw.org > www.fundforanimals.org > www.oceanconservancy.org > www.aspca.org > www.ddal.org > www.greenpeace.org > www.nrdc.org > www.pcrm.org > www.edf.org > www.ncpa.org > www.audobon.org > www.bestfriends.org > www.nwf.org > www.wwf.org > www.defenders.org > www.nature.org > www.nhes.org > www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Dear Lori, I am so sorry to hear of the passing of your dad. You remind me a lot of what we went through. I, too, was very close to my dad. My dad's passing was also unexpectedly. They had placed a breathing tube and just the day before of him passing his doctor told me he was doing so well they were thinking of removing the tube in a few days. Imagine my shock! I was devastated!!! I'm not sure if you went through the same remorse as I did, but I had no choice but to put my dad in a nursing home because my mom is up there in age and has her own health issues. She couldn't care for him, physically. I was full of guilt! I always said I would never put my parents in a nursing home, but I really didn't have a choice. I work full time. Medicare/Medicaid would only pay for a nurse to be at their home for 4 hours, but were willing to pay a nursing home, full time. Go figure! Aarrrgggghhhh! I would travel over an hour, both directions, every day after work and stay with him until evening and spent all day Saturdays and Sundays so I do understand how exhausting it can be! Please take time for yourself now. It will be hard at the beginning, but it does get a little easier with time. Soon you'll be remembering the good, funny, happy times and the bad ones….. not so much. Sending you heartfelt hugs! from NYC Daughter of Celestino (Tino) Suarez Misdiagnosed for years. Diagnosed with LBD March 2009, but we now know he's had it for at least 4-5 years. God called him home on October 27, 2009. Rest in peace, Daddy. (January 29, 1930 - October 27, 2009) > > I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > > Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > > Sincerely, > Lori > > ~~~~~~~~~~~~~~~~~~~~~~~~ > > It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > > > www.aldf.org > www.ifaw.org > www.fundforanimals.org > www.oceanconservancy.org > www.aspca.org > www.ddal.org > www.greenpeace.org > www.nrdc.org > www.pcrm.org > www.edf.org > www.ncpa.org > www.audobon.org > www.bestfriends.org > www.nwf.org > www.wwf.org > www.defenders.org > www.nature.org > www.nhes.org > www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Dear Lori, I am so sorry to read about your father. I remember reading about all of his struggles (and therefore they were your struggles, too). I understand the stress that goes along with those horrible phone calls about things that you really can't fix.... My Mom was at home, but when things became problematic, or there were other issues that arose, I was always the one that got the phone call, no matter what time it was. I could feel my heart beating almost out of my chest..... I hope your father is in a better place, perhaps going to some kind of orientation in heaven for new arrivals, along with my mother. I am surprised at how hospice determines services by the number of words a person can speak. I'm glad that they were able to provide him with services... hospice made so many things easier and calmer for us, and I am very grateful for that. I hope your Mom will feel better soon, and that you will be on the mend, too. Stress is an awful thing to have to live with every day, and I think that everyone on this site deserves a medal for the level of stress that is endured. Sending you condolences and hugs from NY, Helene .. " Maturity is the capacity to endure uncertainty. "                                         \               - Finley " When you feel like giving up, remember why you held on for so long in the first place. "   - Unknown >________________________________ > >To: LBDcaregivers >Sent: Wednesday, August 22, 2012 2:21 PM >Subject: Dad is at peace > > > >I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > >Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > >Sincerely, >Lori > >~~~~~~~~~~~~~~~~~~~~~~~~ > >It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > >www.aldf.org >www.ifaw.org >www.fundforanimals.org >www.oceanconservancy.org >www.aspca.org >www.ddal.org >www.greenpeace.org >www.nrdc.org >www.pcrm.org >www.edf.org >www.ncpa.org >www.audobon.org >www.bestfriends.org >www.nwf.org >www.wwf.org >www.defenders.org >www.nature.org >www.nhes.org >www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Dear Lori, I am so sorry to read about your father. I remember reading about all of his struggles (and therefore they were your struggles, too). I understand the stress that goes along with those horrible phone calls about things that you really can't fix.... My Mom was at home, but when things became problematic, or there were other issues that arose, I was always the one that got the phone call, no matter what time it was. I could feel my heart beating almost out of my chest..... I hope your father is in a better place, perhaps going to some kind of orientation in heaven for new arrivals, along with my mother. I am surprised at how hospice determines services by the number of words a person can speak. I'm glad that they were able to provide him with services... hospice made so many things easier and calmer for us, and I am very grateful for that. I hope your Mom will feel better soon, and that you will be on the mend, too. Stress is an awful thing to have to live with every day, and I think that everyone on this site deserves a medal for the level of stress that is endured. Sending you condolences and hugs from NY, Helene .. " Maturity is the capacity to endure uncertainty. "                                         \               - Finley " When you feel like giving up, remember why you held on for so long in the first place. "   - Unknown >________________________________ > >To: LBDcaregivers >Sent: Wednesday, August 22, 2012 2:21 PM >Subject: Dad is at peace > > > >I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > >Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > >Sincerely, >Lori > >~~~~~~~~~~~~~~~~~~~~~~~~ > >It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > >www.aldf.org >www.ifaw.org >www.fundforanimals.org >www.oceanconservancy.org >www.aspca.org >www.ddal.org >www.greenpeace.org >www.nrdc.org >www.pcrm.org >www.edf.org >www.ncpa.org >www.audobon.org >www.bestfriends.org >www.nwf.org >www.wwf.org >www.defenders.org >www.nature.org >www.nhes.org >www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Dear Lori, I am so sorry to read about your father. I remember reading about all of his struggles (and therefore they were your struggles, too). I understand the stress that goes along with those horrible phone calls about things that you really can't fix.... My Mom was at home, but when things became problematic, or there were other issues that arose, I was always the one that got the phone call, no matter what time it was. I could feel my heart beating almost out of my chest..... I hope your father is in a better place, perhaps going to some kind of orientation in heaven for new arrivals, along with my mother. I am surprised at how hospice determines services by the number of words a person can speak. I'm glad that they were able to provide him with services... hospice made so many things easier and calmer for us, and I am very grateful for that. I hope your Mom will feel better soon, and that you will be on the mend, too. Stress is an awful thing to have to live with every day, and I think that everyone on this site deserves a medal for the level of stress that is endured. Sending you condolences and hugs from NY, Helene .. " Maturity is the capacity to endure uncertainty. "                                         \               - Finley " When you feel like giving up, remember why you held on for so long in the first place. "   - Unknown >________________________________ > >To: LBDcaregivers >Sent: Wednesday, August 22, 2012 2:21 PM >Subject: Dad is at peace > > > >I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > >Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > >Sincerely, >Lori > >~~~~~~~~~~~~~~~~~~~~~~~~ > >It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > >www.aldf.org >www.ifaw.org >www.fundforanimals.org >www.oceanconservancy.org >www.aspca.org >www.ddal.org >www.greenpeace.org >www.nrdc.org >www.pcrm.org >www.edf.org >www.ncpa.org >www.audobon.org >www.bestfriends.org >www.nwf.org >www.wwf.org >www.defenders.org >www.nature.org >www.nhes.org >www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Im so sorry for the loss of your loved ones...Im fairly new on here but know that heartache. I kept my husband home as long as I could but then had to have care forhim. I try to bring him home now and then for a weekend but its getting harder and harder. The guilt I feel is so much and the stress but I thank all of you for sharing your thoughts and comments. One thing I read today helped, it was the fact that we have to isolate ourselves from a lot of things going on as we are going thru this with our parents and loved ones. My husband was diagnosed about 5 years ago but I think he has had it longer. He suffers hallucinations such as he rides a train most every night. What that means I have no idea. Some days he is better than others. Thank you to everyone for your words of wisdom and once again my heart goes out to those who have lost their parents this week. Marilynn To: LBDcaregivers Sent: Wednesday, August 22, 2012 4:14 PM Subject: Re: Dad is at peace  Dear Lori, I am so sorry to hear of the passing of your dad. You remind me a lot of what we went through. I, too, was very close to my dad. My dad's passing was also unexpectedly. They had placed a breathing tube and just the day before of him passing his doctor told me he was doing so well they were thinking of removing the tube in a few days. Imagine my shock! I was devastated!!! I'm not sure if you went through the same remorse as I did, but I had no choice but to put my dad in a nursing home because my mom is up there in age and has her own health issues. She couldn't care for him, physically. I was full of guilt! I always said I would never put my parents in a nursing home, but I really didn't have a choice. I work full time. Medicare/Medicaid would only pay for a nurse to be at their home for 4 hours, but were willing to pay a nursing home, full time. Go figure! Aarrrgggghhhh! I would travel over an hour, both directions, every day after work and stay with him until evening and spent all day Saturdays and Sundays so I do understand how exhausting it can be! Please take time for yourself now. It will be hard at the beginning, but it does get a little easier with time. Soon you'll be remembering the good, funny, happy times and the bad ones….. not so much. Sending you heartfelt hugs! from NYC Daughter of Celestino (Tino) Suarez Misdiagnosed for years. Diagnosed with LBD March 2009, but we now know he's had it for at least 4-5 years. God called him home on October 27, 2009. Rest in peace, Daddy. (January 29, 1930 - October 27, 2009) > > I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > > Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > > Sincerely, > Lori > > ~~~~~~~~~~~~~~~~~~~~~~~~ > > It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > > > www.aldf.org > www.ifaw.org > www.fundforanimals.org > www.oceanconservancy.org > www.aspca.org > www.ddal.org > www.greenpeace.org > www.nrdc.org > www.pcrm.org > www.edf.org > www.ncpa.org > www.audobon.org > www.bestfriends.org > www.nwf.org > www.wwf.org > www.defenders.org > www.nature.org > www.nhes.org > www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Im so sorry for the loss of your loved ones...Im fairly new on here but know that heartache. I kept my husband home as long as I could but then had to have care forhim. I try to bring him home now and then for a weekend but its getting harder and harder. The guilt I feel is so much and the stress but I thank all of you for sharing your thoughts and comments. One thing I read today helped, it was the fact that we have to isolate ourselves from a lot of things going on as we are going thru this with our parents and loved ones. My husband was diagnosed about 5 years ago but I think he has had it longer. He suffers hallucinations such as he rides a train most every night. What that means I have no idea. Some days he is better than others. Thank you to everyone for your words of wisdom and once again my heart goes out to those who have lost their parents this week. Marilynn To: LBDcaregivers Sent: Wednesday, August 22, 2012 4:14 PM Subject: Re: Dad is at peace  Dear Lori, I am so sorry to hear of the passing of your dad. You remind me a lot of what we went through. I, too, was very close to my dad. My dad's passing was also unexpectedly. They had placed a breathing tube and just the day before of him passing his doctor told me he was doing so well they were thinking of removing the tube in a few days. Imagine my shock! I was devastated!!! I'm not sure if you went through the same remorse as I did, but I had no choice but to put my dad in a nursing home because my mom is up there in age and has her own health issues. She couldn't care for him, physically. I was full of guilt! I always said I would never put my parents in a nursing home, but I really didn't have a choice. I work full time. Medicare/Medicaid would only pay for a nurse to be at their home for 4 hours, but were willing to pay a nursing home, full time. Go figure! Aarrrgggghhhh! I would travel over an hour, both directions, every day after work and stay with him until evening and spent all day Saturdays and Sundays so I do understand how exhausting it can be! Please take time for yourself now. It will be hard at the beginning, but it does get a little easier with time. Soon you'll be remembering the good, funny, happy times and the bad ones….. not so much. Sending you heartfelt hugs! from NYC Daughter of Celestino (Tino) Suarez Misdiagnosed for years. Diagnosed with LBD March 2009, but we now know he's had it for at least 4-5 years. God called him home on October 27, 2009. Rest in peace, Daddy. (January 29, 1930 - October 27, 2009) > > I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > > Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > > Sincerely, > Lori > > ~~~~~~~~~~~~~~~~~~~~~~~~ > > It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > > > www.aldf.org > www.ifaw.org > www.fundforanimals.org > www.oceanconservancy.org > www.aspca.org > www.ddal.org > www.greenpeace.org > www.nrdc.org > www.pcrm.org > www.edf.org > www.ncpa.org > www.audobon.org > www.bestfriends.org > www.nwf.org > www.wwf.org > www.defenders.org > www.nature.org > www.nhes.org > www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Im so sorry for the loss of your loved ones...Im fairly new on here but know that heartache. I kept my husband home as long as I could but then had to have care forhim. I try to bring him home now and then for a weekend but its getting harder and harder. The guilt I feel is so much and the stress but I thank all of you for sharing your thoughts and comments. One thing I read today helped, it was the fact that we have to isolate ourselves from a lot of things going on as we are going thru this with our parents and loved ones. My husband was diagnosed about 5 years ago but I think he has had it longer. He suffers hallucinations such as he rides a train most every night. What that means I have no idea. Some days he is better than others. Thank you to everyone for your words of wisdom and once again my heart goes out to those who have lost their parents this week. Marilynn To: LBDcaregivers Sent: Wednesday, August 22, 2012 4:14 PM Subject: Re: Dad is at peace  Dear Lori, I am so sorry to hear of the passing of your dad. You remind me a lot of what we went through. I, too, was very close to my dad. My dad's passing was also unexpectedly. They had placed a breathing tube and just the day before of him passing his doctor told me he was doing so well they were thinking of removing the tube in a few days. Imagine my shock! I was devastated!!! I'm not sure if you went through the same remorse as I did, but I had no choice but to put my dad in a nursing home because my mom is up there in age and has her own health issues. She couldn't care for him, physically. I was full of guilt! I always said I would never put my parents in a nursing home, but I really didn't have a choice. I work full time. Medicare/Medicaid would only pay for a nurse to be at their home for 4 hours, but were willing to pay a nursing home, full time. Go figure! Aarrrgggghhhh! I would travel over an hour, both directions, every day after work and stay with him until evening and spent all day Saturdays and Sundays so I do understand how exhausting it can be! Please take time for yourself now. It will be hard at the beginning, but it does get a little easier with time. Soon you'll be remembering the good, funny, happy times and the bad ones….. not so much. Sending you heartfelt hugs! from NYC Daughter of Celestino (Tino) Suarez Misdiagnosed for years. Diagnosed with LBD March 2009, but we now know he's had it for at least 4-5 years. God called him home on October 27, 2009. Rest in peace, Daddy. (January 29, 1930 - October 27, 2009) > > I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > > Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > > Sincerely, > Lori > > ~~~~~~~~~~~~~~~~~~~~~~~~ > > It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > > > www.aldf.org > www.ifaw.org > www.fundforanimals.org > www.oceanconservancy.org > www.aspca.org > www.ddal.org > www.greenpeace.org > www.nrdc.org > www.pcrm.org > www.edf.org > www.ncpa.org > www.audobon.org > www.bestfriends.org > www.nwf.org > www.wwf.org > www.defenders.org > www.nature.org > www.nhes.org > www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Hi Lori, Please accept my deep condolences on the passing of your your Dad. Your account of his last days and his final passing speaks to a normal ambivalence with the LBD journey. Having not expected this ending so quickly it has to come as a shock - on the other hand it is certainly a blessing when ever any one of our loved ones is able to let loose of the LBD chains and beat the clock to find some peace. I am sending you prayers, strength and courage as you move through this part of the journey. I hope soon enough you will be remembering your Dad in better and happier times. Also sending you prayers for your Mom - who will certainly need time to adjust. God Bless all of you. Best, Judy > ** > > > Dear Lori, > > I am so sorry to read about your father. I remember reading about all of > his struggles (and therefore they were your struggles, too). > > I understand the stress that goes along with those horrible phone calls > about things that you really can't fix.... My Mom was at home, but when > things became problematic, or there were other issues that arose, I was > always the one that got the phone call, no matter what time it was. I > could feel my heart beating almost out of my chest..... > > I hope your father is in a better place, perhaps going to some kind of > orientation in heaven for new arrivals, along with my mother. > > I am surprised at how hospice determines services by the number of words a > person can speak. > I'm glad that they were able to provide him with services... hospice made > so many things easier and calmer for us, and I am very grateful for that. > > I hope your Mom will feel better soon, and that you will be on the mend, > too. Stress is an awful thing to have to live with every day, and I think > that everyone on this site deserves a medal for the level of stress that is > endured. > > Sending you condolences and hugs from NY, > Helene > > . > > " Maturity is the capacity to endure uncertainty. " > - Finley > > " When you feel like giving up, remember why you held on for so long in the > first place. " - Unknown > > >________________________________ > > > >To: LBDcaregivers > >Sent: Wednesday, August 22, 2012 2:21 PM > >Subject: Dad is at peace > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > We didn’t have a great deal of warning, other than two to three days of > minimal responsiveness. One day he was sleeping very hard and completely > non-responsive, but that evening he responded to us some and asked for > fluid. At that point, his swallowing had gotten so bad that we could only > swab his mouth for him. Thank God we had gotten hospice involved in the > last few weeks; we expected this to go on many more years, but were > concerned about end of life issues without hospice so we had him involved > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > rather than as having dementia; unbelievably they could not have him in > hospice for dementia because he could speak more than six words. That > shocked me as a very strange contingency. He had been losing weight and > having trouble eating, but we really didn’t expect this loss as he was only > diagnosed two > years ago. I am experiencing very mixed feelings; such intense relief that > Dad is not suffering with this beastly disease, but it is still the loss, > or the final loss, of my father. We were quite close. Although he was in a > nursing home most of the time since January, Mom was there pretty much > daily, and I was there very close to daily, for hours at a time each > occasion; he didn’t expect a visit, he expected you to entertain him each > day. He had horrible hallucinations that were very violent and we were > working on medication management for that, so he was genuinely suffering > terribly. So many people assume that if your loved one is in a nursing > home, you aren’t really dealing with them any more to the extent of other > people, but I can tell you that if you spend 3-4 hours there per day, > feeding and tending to that loved one, and then going home only to wait for > phone calls that he is causing disturbances, it is exhausting to say the > least. I > remain somewhat numb but it is getting better, although I have a lot of > physical symptoms from the stress. Mom is holding up well, but has been ill > and requiring strong antibiotics as well. So I continue to pray for her, as > well as Dad. > > > >Thank you all for all the information you offer and the support. I > haven’t written often but have taken in all that has been said. > > > >Sincerely, > >Lori > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > >It came to me that every time I lose a dog they take a piece of my heart > with them, and every new dog that comes into my life gifts me with a piece > of their heart. If I live long enough all of the components of my heart > will be dog, and I will become as generous and loving as they are. > ~Anonymous~ > > > >www.aldf.org > >www.ifaw.org > >www.fundforanimals.org > >www.oceanconservancy.org > >www.aspca.org > >www.ddal.org > >www.greenpeace.org > >www.nrdc.org > >www.pcrm.org > >www.edf.org > >www.ncpa.org > >www.audobon.org > >www.bestfriends.org > >www.nwf.org > >www.wwf.org > >www.defenders.org > >www.nature.org > >www.nhes.org > >www.wolf.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Hi Lori, Please accept my deep condolences on the passing of your your Dad. Your account of his last days and his final passing speaks to a normal ambivalence with the LBD journey. Having not expected this ending so quickly it has to come as a shock - on the other hand it is certainly a blessing when ever any one of our loved ones is able to let loose of the LBD chains and beat the clock to find some peace. I am sending you prayers, strength and courage as you move through this part of the journey. I hope soon enough you will be remembering your Dad in better and happier times. Also sending you prayers for your Mom - who will certainly need time to adjust. God Bless all of you. Best, Judy > ** > > > Dear Lori, > > I am so sorry to read about your father. I remember reading about all of > his struggles (and therefore they were your struggles, too). > > I understand the stress that goes along with those horrible phone calls > about things that you really can't fix.... My Mom was at home, but when > things became problematic, or there were other issues that arose, I was > always the one that got the phone call, no matter what time it was. I > could feel my heart beating almost out of my chest..... > > I hope your father is in a better place, perhaps going to some kind of > orientation in heaven for new arrivals, along with my mother. > > I am surprised at how hospice determines services by the number of words a > person can speak. > I'm glad that they were able to provide him with services... hospice made > so many things easier and calmer for us, and I am very grateful for that. > > I hope your Mom will feel better soon, and that you will be on the mend, > too. Stress is an awful thing to have to live with every day, and I think > that everyone on this site deserves a medal for the level of stress that is > endured. > > Sending you condolences and hugs from NY, > Helene > > . > > " Maturity is the capacity to endure uncertainty. " > - Finley > > " When you feel like giving up, remember why you held on for so long in the > first place. " - Unknown > > >________________________________ > > > >To: LBDcaregivers > >Sent: Wednesday, August 22, 2012 2:21 PM > >Subject: Dad is at peace > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > We didn’t have a great deal of warning, other than two to three days of > minimal responsiveness. One day he was sleeping very hard and completely > non-responsive, but that evening he responded to us some and asked for > fluid. At that point, his swallowing had gotten so bad that we could only > swab his mouth for him. Thank God we had gotten hospice involved in the > last few weeks; we expected this to go on many more years, but were > concerned about end of life issues without hospice so we had him involved > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > rather than as having dementia; unbelievably they could not have him in > hospice for dementia because he could speak more than six words. That > shocked me as a very strange contingency. He had been losing weight and > having trouble eating, but we really didn’t expect this loss as he was only > diagnosed two > years ago. I am experiencing very mixed feelings; such intense relief that > Dad is not suffering with this beastly disease, but it is still the loss, > or the final loss, of my father. We were quite close. Although he was in a > nursing home most of the time since January, Mom was there pretty much > daily, and I was there very close to daily, for hours at a time each > occasion; he didn’t expect a visit, he expected you to entertain him each > day. He had horrible hallucinations that were very violent and we were > working on medication management for that, so he was genuinely suffering > terribly. So many people assume that if your loved one is in a nursing > home, you aren’t really dealing with them any more to the extent of other > people, but I can tell you that if you spend 3-4 hours there per day, > feeding and tending to that loved one, and then going home only to wait for > phone calls that he is causing disturbances, it is exhausting to say the > least. I > remain somewhat numb but it is getting better, although I have a lot of > physical symptoms from the stress. Mom is holding up well, but has been ill > and requiring strong antibiotics as well. So I continue to pray for her, as > well as Dad. > > > >Thank you all for all the information you offer and the support. I > haven’t written often but have taken in all that has been said. > > > >Sincerely, > >Lori > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > >It came to me that every time I lose a dog they take a piece of my heart > with them, and every new dog that comes into my life gifts me with a piece > of their heart. If I live long enough all of the components of my heart > will be dog, and I will become as generous and loving as they are. > ~Anonymous~ > > > >www.aldf.org > >www.ifaw.org > >www.fundforanimals.org > >www.oceanconservancy.org > >www.aspca.org > >www.ddal.org > >www.greenpeace.org > >www.nrdc.org > >www.pcrm.org > >www.edf.org > >www.ncpa.org > >www.audobon.org > >www.bestfriends.org > >www.nwf.org > >www.wwf.org > >www.defenders.org > >www.nature.org > >www.nhes.org > >www.wolf.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Hi Lori, Please accept my deep condolences on the passing of your your Dad. Your account of his last days and his final passing speaks to a normal ambivalence with the LBD journey. Having not expected this ending so quickly it has to come as a shock - on the other hand it is certainly a blessing when ever any one of our loved ones is able to let loose of the LBD chains and beat the clock to find some peace. I am sending you prayers, strength and courage as you move through this part of the journey. I hope soon enough you will be remembering your Dad in better and happier times. Also sending you prayers for your Mom - who will certainly need time to adjust. God Bless all of you. Best, Judy > ** > > > Dear Lori, > > I am so sorry to read about your father. I remember reading about all of > his struggles (and therefore they were your struggles, too). > > I understand the stress that goes along with those horrible phone calls > about things that you really can't fix.... My Mom was at home, but when > things became problematic, or there were other issues that arose, I was > always the one that got the phone call, no matter what time it was. I > could feel my heart beating almost out of my chest..... > > I hope your father is in a better place, perhaps going to some kind of > orientation in heaven for new arrivals, along with my mother. > > I am surprised at how hospice determines services by the number of words a > person can speak. > I'm glad that they were able to provide him with services... hospice made > so many things easier and calmer for us, and I am very grateful for that. > > I hope your Mom will feel better soon, and that you will be on the mend, > too. Stress is an awful thing to have to live with every day, and I think > that everyone on this site deserves a medal for the level of stress that is > endured. > > Sending you condolences and hugs from NY, > Helene > > . > > " Maturity is the capacity to endure uncertainty. " > - Finley > > " When you feel like giving up, remember why you held on for so long in the > first place. " - Unknown > > >________________________________ > > > >To: LBDcaregivers > >Sent: Wednesday, August 22, 2012 2:21 PM > >Subject: Dad is at peace > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > We didn’t have a great deal of warning, other than two to three days of > minimal responsiveness. One day he was sleeping very hard and completely > non-responsive, but that evening he responded to us some and asked for > fluid. At that point, his swallowing had gotten so bad that we could only > swab his mouth for him. Thank God we had gotten hospice involved in the > last few weeks; we expected this to go on many more years, but were > concerned about end of life issues without hospice so we had him involved > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > rather than as having dementia; unbelievably they could not have him in > hospice for dementia because he could speak more than six words. That > shocked me as a very strange contingency. He had been losing weight and > having trouble eating, but we really didn’t expect this loss as he was only > diagnosed two > years ago. I am experiencing very mixed feelings; such intense relief that > Dad is not suffering with this beastly disease, but it is still the loss, > or the final loss, of my father. We were quite close. Although he was in a > nursing home most of the time since January, Mom was there pretty much > daily, and I was there very close to daily, for hours at a time each > occasion; he didn’t expect a visit, he expected you to entertain him each > day. He had horrible hallucinations that were very violent and we were > working on medication management for that, so he was genuinely suffering > terribly. So many people assume that if your loved one is in a nursing > home, you aren’t really dealing with them any more to the extent of other > people, but I can tell you that if you spend 3-4 hours there per day, > feeding and tending to that loved one, and then going home only to wait for > phone calls that he is causing disturbances, it is exhausting to say the > least. I > remain somewhat numb but it is getting better, although I have a lot of > physical symptoms from the stress. Mom is holding up well, but has been ill > and requiring strong antibiotics as well. So I continue to pray for her, as > well as Dad. > > > >Thank you all for all the information you offer and the support. I > haven’t written often but have taken in all that has been said. > > > >Sincerely, > >Lori > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > >It came to me that every time I lose a dog they take a piece of my heart > with them, and every new dog that comes into my life gifts me with a piece > of their heart. If I live long enough all of the components of my heart > will be dog, and I will become as generous and loving as they are. > ~Anonymous~ > > > >www.aldf.org > >www.ifaw.org > >www.fundforanimals.org > >www.oceanconservancy.org > >www.aspca.org > >www.ddal.org > >www.greenpeace.org > >www.nrdc.org > >www.pcrm.org > >www.edf.org > >www.ncpa.org > >www.audobon.org > >www.bestfriends.org > >www.nwf.org > >www.wwf.org > >www.defenders.org > >www.nature.org > >www.nhes.org > >www.wolf.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Thank you Judy, as well as others who have written...your words do bring comfort. Prayers are always welcome. Lori Dad is at peace > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > We didn’t have a great deal of warning, other than two to three days of > minimal responsiveness. One day he was sleeping very hard and completely > non-responsive, but that evening he responded to us some and asked for > fluid. At that point, his swallowing had gotten so bad that we could only > swab his mouth for him. Thank God we had gotten hospice involved in the > last few weeks; we expected this to go on many more years, but were > concerned about end of life issues without hospice so we had him involved > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > rather than as having dementia; unbelievably they could not have him in > hospice for dementia because he could speak more than six words. That > shocked me as a very strange contingency. He had been losing weight and > having trouble eating, but we really didn’t expect this loss as he was > only > diagnosed two > years ago. I am experiencing very mixed feelings; such intense relief that > Dad is not suffering with this beastly disease, but it is still the loss, > or the final loss, of my father. We were quite close. Although he was in a > nursing home most of the time since January, Mom was there pretty much > daily, and I was there very close to daily, for hours at a time each > occasion; he didn’t expect a visit, he expected you to entertain him each > day. He had horrible hallucinations that were very violent and we were > working on medication management for that, so he was genuinely suffering > terribly. So many people assume that if your loved one is in a nursing > home, you aren’t really dealing with them any more to the extent of other > people, but I can tell you that if you spend 3-4 hours there per day, > feeding and tending to that loved one, and then going home only to wait > for > phone calls that he is causing disturbances, it is exhausting to say the > least. I > remain somewhat numb but it is getting better, although I have a lot of > physical symptoms from the stress. Mom is holding up well, but has been > ill > and requiring strong antibiotics as well. So I continue to pray for her, > as > well as Dad. > > > >Thank you all for all the information you offer and the support. I > haven’t written often but have taken in all that has been said. > > > >Sincerely, > >Lori > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > >It came to me that every time I lose a dog they take a piece of my heart > with them, and every new dog that comes into my life gifts me with a piece > of their heart. If I live long enough all of the components of my heart > will be dog, and I will become as generous and loving as they are. > ~Anonymous~ > > > >www.aldf.org > >www.ifaw.org > >www.fundforanimals.org > >www.oceanconservancy.org > >www.aspca.org > >www.ddal.org > >www.greenpeace.org > >www.nrdc.org > >www.pcrm.org > >www.edf.org > >www.ncpa.org > >www.audobon.org > >www.bestfriends.org > >www.nwf.org > >www.wwf.org > >www.defenders.org > >www.nature.org > >www.nhes.org > >www.wolf.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Thank you Judy, as well as others who have written...your words do bring comfort. Prayers are always welcome. Lori Dad is at peace > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > We didn’t have a great deal of warning, other than two to three days of > minimal responsiveness. One day he was sleeping very hard and completely > non-responsive, but that evening he responded to us some and asked for > fluid. At that point, his swallowing had gotten so bad that we could only > swab his mouth for him. Thank God we had gotten hospice involved in the > last few weeks; we expected this to go on many more years, but were > concerned about end of life issues without hospice so we had him involved > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > rather than as having dementia; unbelievably they could not have him in > hospice for dementia because he could speak more than six words. That > shocked me as a very strange contingency. He had been losing weight and > having trouble eating, but we really didn’t expect this loss as he was > only > diagnosed two > years ago. I am experiencing very mixed feelings; such intense relief that > Dad is not suffering with this beastly disease, but it is still the loss, > or the final loss, of my father. We were quite close. Although he was in a > nursing home most of the time since January, Mom was there pretty much > daily, and I was there very close to daily, for hours at a time each > occasion; he didn’t expect a visit, he expected you to entertain him each > day. He had horrible hallucinations that were very violent and we were > working on medication management for that, so he was genuinely suffering > terribly. So many people assume that if your loved one is in a nursing > home, you aren’t really dealing with them any more to the extent of other > people, but I can tell you that if you spend 3-4 hours there per day, > feeding and tending to that loved one, and then going home only to wait > for > phone calls that he is causing disturbances, it is exhausting to say the > least. I > remain somewhat numb but it is getting better, although I have a lot of > physical symptoms from the stress. Mom is holding up well, but has been > ill > and requiring strong antibiotics as well. So I continue to pray for her, > as > well as Dad. > > > >Thank you all for all the information you offer and the support. I > haven’t written often but have taken in all that has been said. > > > >Sincerely, > >Lori > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > >It came to me that every time I lose a dog they take a piece of my heart > with them, and every new dog that comes into my life gifts me with a piece > of their heart. If I live long enough all of the components of my heart > will be dog, and I will become as generous and loving as they are. > ~Anonymous~ > > > >www.aldf.org > >www.ifaw.org > >www.fundforanimals.org > >www.oceanconservancy.org > >www.aspca.org > >www.ddal.org > >www.greenpeace.org > >www.nrdc.org > >www.pcrm.org > >www.edf.org > >www.ncpa.org > >www.audobon.org > >www.bestfriends.org > >www.nwf.org > >www.wwf.org > >www.defenders.org > >www.nature.org > >www.nhes.org > >www.wolf.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Thank you Judy, as well as others who have written...your words do bring comfort. Prayers are always welcome. Lori Dad is at peace > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > We didn’t have a great deal of warning, other than two to three days of > minimal responsiveness. One day he was sleeping very hard and completely > non-responsive, but that evening he responded to us some and asked for > fluid. At that point, his swallowing had gotten so bad that we could only > swab his mouth for him. Thank God we had gotten hospice involved in the > last few weeks; we expected this to go on many more years, but were > concerned about end of life issues without hospice so we had him involved > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > rather than as having dementia; unbelievably they could not have him in > hospice for dementia because he could speak more than six words. That > shocked me as a very strange contingency. He had been losing weight and > having trouble eating, but we really didn’t expect this loss as he was > only > diagnosed two > years ago. I am experiencing very mixed feelings; such intense relief that > Dad is not suffering with this beastly disease, but it is still the loss, > or the final loss, of my father. We were quite close. Although he was in a > nursing home most of the time since January, Mom was there pretty much > daily, and I was there very close to daily, for hours at a time each > occasion; he didn’t expect a visit, he expected you to entertain him each > day. He had horrible hallucinations that were very violent and we were > working on medication management for that, so he was genuinely suffering > terribly. So many people assume that if your loved one is in a nursing > home, you aren’t really dealing with them any more to the extent of other > people, but I can tell you that if you spend 3-4 hours there per day, > feeding and tending to that loved one, and then going home only to wait > for > phone calls that he is causing disturbances, it is exhausting to say the > least. I > remain somewhat numb but it is getting better, although I have a lot of > physical symptoms from the stress. Mom is holding up well, but has been > ill > and requiring strong antibiotics as well. So I continue to pray for her, > as > well as Dad. > > > >Thank you all for all the information you offer and the support. I > haven’t written often but have taken in all that has been said. > > > >Sincerely, > >Lori > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > >It came to me that every time I lose a dog they take a piece of my heart > with them, and every new dog that comes into my life gifts me with a piece > of their heart. If I live long enough all of the components of my heart > will be dog, and I will become as generous and loving as they are. > ~Anonymous~ > > > >www.aldf.org > >www.ifaw.org > >www.fundforanimals.org > >www.oceanconservancy.org > >www.aspca.org > >www.ddal.org > >www.greenpeace.org > >www.nrdc.org > >www.pcrm.org > >www.edf.org > >www.ncpa.org > >www.audobon.org > >www.bestfriends.org > >www.nwf.org > >www.wwf.org > >www.defenders.org > >www.nature.org > >www.nhes.org > >www.wolf.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Lori: I am so sorry for your loss of your loved one!! I hope that God will wrap his arms around you!! Vivian > ** > > > Thank you Judy, as well as others who have written...your words do bring > comfort. Prayers are always welcome. > > Lori > > > Dad is at peace > > > > > > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > > We didn’t have a great deal of warning, other than two to three days of > > minimal responsiveness. One day he was sleeping very hard and completely > > non-responsive, but that evening he responded to us some and asked for > > fluid. At that point, his swallowing had gotten so bad that we could only > > swab his mouth for him. Thank God we had gotten hospice involved in the > > last few weeks; we expected this to go on many more years, but were > > concerned about end of life issues without hospice so we had him involved > > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > > rather than as having dementia; unbelievably they could not have him in > > hospice for dementia because he could speak more than six words. That > > shocked me as a very strange contingency. He had been losing weight and > > having trouble eating, but we really didn’t expect this loss as he was > > only > > diagnosed two > > years ago. I am experiencing very mixed feelings; such intense relief > that > > Dad is not suffering with this beastly disease, but it is still the loss, > > or the final loss, of my father. We were quite close. Although he was in > a > > nursing home most of the time since January, Mom was there pretty much > > daily, and I was there very close to daily, for hours at a time each > > occasion; he didn’t expect a visit, he expected you to entertain him each > > day. He had horrible hallucinations that were very violent and we were > > working on medication management for that, so he was genuinely suffering > > terribly. So many people assume that if your loved one is in a nursing > > home, you aren’t really dealing with them any more to the extent of other > > people, but I can tell you that if you spend 3-4 hours there per day, > > feeding and tending to that loved one, and then going home only to wait > > for > > phone calls that he is causing disturbances, it is exhausting to say the > > least. I > > remain somewhat numb but it is getting better, although I have a lot of > > physical symptoms from the stress. Mom is holding up well, but has been > > ill > > and requiring strong antibiotics as well. So I continue to pray for her, > > as > > well as Dad. > > > > > >Thank you all for all the information you offer and the support. I > > haven’t written often but have taken in all that has been said. > > > > > >Sincerely, > > >Lori > > > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > > > >It came to me that every time I lose a dog they take a piece of my heart > > with them, and every new dog that comes into my life gifts me with a > piece > > of their heart. If I live long enough all of the components of my heart > > will be dog, and I will become as generous and loving as they are. > > ~Anonymous~ > > > > > >www.aldf.org > > >www.ifaw.org > > >www.fundforanimals.org > > >www.oceanconservancy.org > > >www.aspca.org > > >www.ddal.org > > >www.greenpeace.org > > >www.nrdc.org > > >www.pcrm.org > > >www.edf.org > > >www.ncpa.org > > >www.audobon.org > > >www.bestfriends.org > > >www.nwf.org > > >www.wwf.org > > >www.defenders.org > > >www.nature.org > > >www.nhes.org > > >www.wolf.org > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Lori: I am so sorry for your loss of your loved one!! I hope that God will wrap his arms around you!! Vivian > ** > > > Thank you Judy, as well as others who have written...your words do bring > comfort. Prayers are always welcome. > > Lori > > > Dad is at peace > > > > > > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > > We didn’t have a great deal of warning, other than two to three days of > > minimal responsiveness. One day he was sleeping very hard and completely > > non-responsive, but that evening he responded to us some and asked for > > fluid. At that point, his swallowing had gotten so bad that we could only > > swab his mouth for him. Thank God we had gotten hospice involved in the > > last few weeks; we expected this to go on many more years, but were > > concerned about end of life issues without hospice so we had him involved > > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > > rather than as having dementia; unbelievably they could not have him in > > hospice for dementia because he could speak more than six words. That > > shocked me as a very strange contingency. He had been losing weight and > > having trouble eating, but we really didn’t expect this loss as he was > > only > > diagnosed two > > years ago. I am experiencing very mixed feelings; such intense relief > that > > Dad is not suffering with this beastly disease, but it is still the loss, > > or the final loss, of my father. We were quite close. Although he was in > a > > nursing home most of the time since January, Mom was there pretty much > > daily, and I was there very close to daily, for hours at a time each > > occasion; he didn’t expect a visit, he expected you to entertain him each > > day. He had horrible hallucinations that were very violent and we were > > working on medication management for that, so he was genuinely suffering > > terribly. So many people assume that if your loved one is in a nursing > > home, you aren’t really dealing with them any more to the extent of other > > people, but I can tell you that if you spend 3-4 hours there per day, > > feeding and tending to that loved one, and then going home only to wait > > for > > phone calls that he is causing disturbances, it is exhausting to say the > > least. I > > remain somewhat numb but it is getting better, although I have a lot of > > physical symptoms from the stress. Mom is holding up well, but has been > > ill > > and requiring strong antibiotics as well. So I continue to pray for her, > > as > > well as Dad. > > > > > >Thank you all for all the information you offer and the support. I > > haven’t written often but have taken in all that has been said. > > > > > >Sincerely, > > >Lori > > > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > > > >It came to me that every time I lose a dog they take a piece of my heart > > with them, and every new dog that comes into my life gifts me with a > piece > > of their heart. If I live long enough all of the components of my heart > > will be dog, and I will become as generous and loving as they are. > > ~Anonymous~ > > > > > >www.aldf.org > > >www.ifaw.org > > >www.fundforanimals.org > > >www.oceanconservancy.org > > >www.aspca.org > > >www.ddal.org > > >www.greenpeace.org > > >www.nrdc.org > > >www.pcrm.org > > >www.edf.org > > >www.ncpa.org > > >www.audobon.org > > >www.bestfriends.org > > >www.nwf.org > > >www.wwf.org > > >www.defenders.org > > >www.nature.org > > >www.nhes.org > > >www.wolf.org > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Lori: I am so sorry for your loss of your loved one!! I hope that God will wrap his arms around you!! Vivian > ** > > > Thank you Judy, as well as others who have written...your words do bring > comfort. Prayers are always welcome. > > Lori > > > Dad is at peace > > > > > > > > > > > > > >I just wanted to share with you all that Dad passed away on August 9th. > > We didn’t have a great deal of warning, other than two to three days of > > minimal responsiveness. One day he was sleeping very hard and completely > > non-responsive, but that evening he responded to us some and asked for > > fluid. At that point, his swallowing had gotten so bad that we could only > > swab his mouth for him. Thank God we had gotten hospice involved in the > > last few weeks; we expected this to go on many more years, but were > > concerned about end of life issues without hospice so we had him involved > > on a month long ‘trial’, where they listed him as ‘failure to thrive’ > > rather than as having dementia; unbelievably they could not have him in > > hospice for dementia because he could speak more than six words. That > > shocked me as a very strange contingency. He had been losing weight and > > having trouble eating, but we really didn’t expect this loss as he was > > only > > diagnosed two > > years ago. I am experiencing very mixed feelings; such intense relief > that > > Dad is not suffering with this beastly disease, but it is still the loss, > > or the final loss, of my father. We were quite close. Although he was in > a > > nursing home most of the time since January, Mom was there pretty much > > daily, and I was there very close to daily, for hours at a time each > > occasion; he didn’t expect a visit, he expected you to entertain him each > > day. He had horrible hallucinations that were very violent and we were > > working on medication management for that, so he was genuinely suffering > > terribly. So many people assume that if your loved one is in a nursing > > home, you aren’t really dealing with them any more to the extent of other > > people, but I can tell you that if you spend 3-4 hours there per day, > > feeding and tending to that loved one, and then going home only to wait > > for > > phone calls that he is causing disturbances, it is exhausting to say the > > least. I > > remain somewhat numb but it is getting better, although I have a lot of > > physical symptoms from the stress. Mom is holding up well, but has been > > ill > > and requiring strong antibiotics as well. So I continue to pray for her, > > as > > well as Dad. > > > > > >Thank you all for all the information you offer and the support. I > > haven’t written often but have taken in all that has been said. > > > > > >Sincerely, > > >Lori > > > > > >~~~~~~~~~~~~~~~~~~~~~~~~ > > > > > >It came to me that every time I lose a dog they take a piece of my heart > > with them, and every new dog that comes into my life gifts me with a > piece > > of their heart. If I live long enough all of the components of my heart > > will be dog, and I will become as generous and loving as they are. > > ~Anonymous~ > > > > > >www.aldf.org > > >www.ifaw.org > > >www.fundforanimals.org > > >www.oceanconservancy.org > > >www.aspca.org > > >www.ddal.org > > >www.greenpeace.org > > >www.nrdc.org > > >www.pcrm.org > > >www.edf.org > > >www.ncpa.org > > >www.audobon.org > > >www.bestfriends.org > > >www.nwf.org > > >www.wwf.org > > >www.defenders.org > > >www.nature.org > > >www.nhes.org > > >www.wolf.org > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Helene and Lori, very sorry to hear of the loss of your loved ones. i wake up every day and think that one day my wife Kay won't wake up with me, although i made her promise she won't leave without me. i'm sure i will be devasted, as you must be; but i would wish her to go quickly and quietly, rather than this damned LBD- if that is Gods' will. They are strong who endure great suffering and tribulation and live to tell of it.....anon............ Subject: Re: Dad is at peace To: " LBDcaregivers " <LBDcaregivers > Date: Wednesday, August 22, 2012, 2:28 PM  Dear Lori, I am so sorry to read about your father. I remember reading about all of his struggles (and therefore they were your struggles, too). I understand the stress that goes along with those horrible phone calls about things that you really can't fix.... My Mom was at home, but when things became problematic, or there were other issues that arose, I was always the one that got the phone call, no matter what time it was. I could feel my heart beating almost out of my chest..... I hope your father is in a better place, perhaps going to some kind of orientation in heaven for new arrivals, along with my mother. I am surprised at how hospice determines services by the number of words a person can speak. I'm glad that they were able to provide him with services... hospice made so many things easier and calmer for us, and I am very grateful for that. I hope your Mom will feel better soon, and that you will be on the mend, too. Stress is an awful thing to have to live with every day, and I think that everyone on this site deserves a medal for the level of stress that is endured. Sending you condolences and hugs from NY, Helene .. " Maturity is the capacity to endure uncertainty. "                                         \               - Finley " When you feel like giving up, remember why you held on for so long in the first place. "   - Unknown >________________________________ > >To: LBDcaregivers >Sent: Wednesday, August 22, 2012 2:21 PM >Subject: Dad is at peace > > > >I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > >Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > >Sincerely, >Lori > >~~~~~~~~~~~~~~~~~~~~~~~~ > >It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > >www.aldf.org >www.ifaw.org >www.fundforanimals.org >www.oceanconservancy.org >www.aspca.org >www.ddal.org >www.greenpeace.org >www.nrdc.org >www.pcrm.org >www.edf.org >www.ncpa.org >www.audobon.org >www.bestfriends.org >www.nwf.org >www.wwf.org >www.defenders.org >www.nature.org >www.nhes.org >www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Helene and Lori, very sorry to hear of the loss of your loved ones. i wake up every day and think that one day my wife Kay won't wake up with me, although i made her promise she won't leave without me. i'm sure i will be devasted, as you must be; but i would wish her to go quickly and quietly, rather than this damned LBD- if that is Gods' will. They are strong who endure great suffering and tribulation and live to tell of it.....anon............ Subject: Re: Dad is at peace To: " LBDcaregivers " <LBDcaregivers > Date: Wednesday, August 22, 2012, 2:28 PM  Dear Lori, I am so sorry to read about your father. I remember reading about all of his struggles (and therefore they were your struggles, too). I understand the stress that goes along with those horrible phone calls about things that you really can't fix.... My Mom was at home, but when things became problematic, or there were other issues that arose, I was always the one that got the phone call, no matter what time it was. I could feel my heart beating almost out of my chest..... I hope your father is in a better place, perhaps going to some kind of orientation in heaven for new arrivals, along with my mother. I am surprised at how hospice determines services by the number of words a person can speak. I'm glad that they were able to provide him with services... hospice made so many things easier and calmer for us, and I am very grateful for that. I hope your Mom will feel better soon, and that you will be on the mend, too. Stress is an awful thing to have to live with every day, and I think that everyone on this site deserves a medal for the level of stress that is endured. Sending you condolences and hugs from NY, Helene .. " Maturity is the capacity to endure uncertainty. "                                         \               - Finley " When you feel like giving up, remember why you held on for so long in the first place. "   - Unknown >________________________________ > >To: LBDcaregivers >Sent: Wednesday, August 22, 2012 2:21 PM >Subject: Dad is at peace > > > >I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > >Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > >Sincerely, >Lori > >~~~~~~~~~~~~~~~~~~~~~~~~ > >It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > >www.aldf.org >www.ifaw.org >www.fundforanimals.org >www.oceanconservancy.org >www.aspca.org >www.ddal.org >www.greenpeace.org >www.nrdc.org >www.pcrm.org >www.edf.org >www.ncpa.org >www.audobon.org >www.bestfriends.org >www.nwf.org >www.wwf.org >www.defenders.org >www.nature.org >www.nhes.org >www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Helene and Lori, very sorry to hear of the loss of your loved ones. i wake up every day and think that one day my wife Kay won't wake up with me, although i made her promise she won't leave without me. i'm sure i will be devasted, as you must be; but i would wish her to go quickly and quietly, rather than this damned LBD- if that is Gods' will. They are strong who endure great suffering and tribulation and live to tell of it.....anon............ Subject: Re: Dad is at peace To: " LBDcaregivers " <LBDcaregivers > Date: Wednesday, August 22, 2012, 2:28 PM  Dear Lori, I am so sorry to read about your father. I remember reading about all of his struggles (and therefore they were your struggles, too). I understand the stress that goes along with those horrible phone calls about things that you really can't fix.... My Mom was at home, but when things became problematic, or there were other issues that arose, I was always the one that got the phone call, no matter what time it was. I could feel my heart beating almost out of my chest..... I hope your father is in a better place, perhaps going to some kind of orientation in heaven for new arrivals, along with my mother. I am surprised at how hospice determines services by the number of words a person can speak. I'm glad that they were able to provide him with services... hospice made so many things easier and calmer for us, and I am very grateful for that. I hope your Mom will feel better soon, and that you will be on the mend, too. Stress is an awful thing to have to live with every day, and I think that everyone on this site deserves a medal for the level of stress that is endured. Sending you condolences and hugs from NY, Helene .. " Maturity is the capacity to endure uncertainty. "                                         \               - Finley " When you feel like giving up, remember why you held on for so long in the first place. "   - Unknown >________________________________ > >To: LBDcaregivers >Sent: Wednesday, August 22, 2012 2:21 PM >Subject: Dad is at peace > > > >I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. > >Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. > >Sincerely, >Lori > >~~~~~~~~~~~~~~~~~~~~~~~~ > >It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ > >www.aldf.org >www.ifaw.org >www.fundforanimals.org >www.oceanconservancy.org >www.aspca.org >www.ddal.org >www.greenpeace.org >www.nrdc.org >www.pcrm.org >www.edf.org >www.ncpa.org >www.audobon.org >www.bestfriends.org >www.nwf.org >www.wwf.org >www.defenders.org >www.nature.org >www.nhes.org >www.wolf.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2012 Report Share Posted August 23, 2012 My sincere condolences to you and your family at the loss of your father. Losing a parent is very difficult. I am sure you will realize that your mother needs more support now. I hope she does not live alone but if she does, she will need a lot of help to get through this period in good shape. God Bless you all. Leona Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2012 Report Share Posted August 23, 2012 My sincere condolences to you and your family at the loss of your father. Losing a parent is very difficult. I am sure you will realize that your mother needs more support now. I hope she does not live alone but if she does, she will need a lot of help to get through this period in good shape. God Bless you all. Leona Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2012 Report Share Posted August 23, 2012 My sincere condolences to you and your family at the loss of your father. Losing a parent is very difficult. I am sure you will realize that your mother needs more support now. I hope she does not live alone but if she does, she will need a lot of help to get through this period in good shape. God Bless you all. Leona Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2012 Report Share Posted August 24, 2012 Lori, Sending you and your family many hugs and condolences. It is a hard journey for those of us who travel it. I hope you find some relief that your Dad  didn't have to continue in his pain but has passed to a better world. Hugs, Donna R Dad is at peace  I just wanted to share with you all that Dad passed away on August 9th. We didn’t have a great deal of warning, other than two to three days of minimal responsiveness. One day he was sleeping very hard and completely non-responsive, but that evening he responded to us some and asked for fluid. At that point, his swallowing had gotten so bad that we could only swab his mouth for him. Thank God we had gotten hospice involved in the last few weeks; we expected this to go on many more years, but were concerned about end of life issues without hospice so we had him involved on a month long ‘trial’, where they listed him as ‘failure to thrive’ rather than as having dementia; unbelievably they could not have him in hospice for dementia because he could speak more than six words. That shocked me as a very strange contingency. He had been losing weight and having trouble eating, but we really didn’t expect this loss as he was only diagnosed two years ago. I am experiencing very mixed feelings; such intense relief that Dad is not suffering with this beastly disease, but it is still the loss, or the final loss, of my father. We were quite close. Although he was in a nursing home most of the time since January, Mom was there pretty much daily, and I was there very close to daily, for hours at a time each occasion; he didn’t expect a visit, he expected you to entertain him each day. He had horrible hallucinations that were very violent and we were working on medication management for that, so he was genuinely suffering terribly. So many people assume that if your loved one is in a nursing home, you aren’t really dealing with them any more to the extent of other people, but I can tell you that if you spend 3-4 hours there per day, feeding and tending to that loved one, and then going home only to wait for phone calls that he is causing disturbances, it is exhausting to say the least. I remain somewhat numb but it is getting better, although I have a lot of physical symptoms from the stress. Mom is holding up well, but has been ill and requiring strong antibiotics as well. So I continue to pray for her, as well as Dad. Thank you all for all the information you offer and the support. I haven’t written often but have taken in all that has been said. Sincerely, Lori ~~~~~~~~~~~~~~~~~~~~~~~~ It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ www.aldf.org www.ifaw.org www.fundforanimals.org www.oceanconservancy.org www.aspca.org www.ddal.org www.greenpeace.org www.nrdc.org www.pcrm.org www.edf.org www.ncpa.org www.audobon.org www.bestfriends.org www.nwf.org www.wwf.org www.defenders.org www.nature.org www.nhes.org www.wolf.org Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.