Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Hello Helene, Helene, what a wake up call this morning from you to the group. I want to offer you my deepest condolences on the passing of your dear Mom from this dreaded disease. I have been a part of this board for several years and have always benefited from your posts and especially appreciated your answers to some of my most dire questions and especially being there for me on the occasions that there were no good answers. Your mother has always sounded a lot like mine...the same age... ethnic background and upbringing and certainly the same value for family. I know you have been a wonderful daughter to her and your post speaks to your endless devotion to your dear mother's every need even being able to keep her at home till the end. I hope that commitment to her care gives you comfort in these difficult days. Please know that my prayers and well wishes are with you and your family as you face this major loss. I hope now you will finally be able to have some peace as you begin to let in the memories of your mom in better days. Sending you Big Bronx Hugs, Judy > ** > > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at > her home in the Bronx (NY) on Saturday morning, August 18th. She died > peacefully in her sleep, and for that we are grateful. It had gotten to the > point where chewing was often something that did not happen, and sometimes > swallowing was an issue, but we were still able to get food into her. I am > grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal > feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who > endured so much in her lifetime, yet worried about everyone around her > before she worried about herself. She fought the good fight with every > breath she took. She didn't have many physical posessions, but that didn't > matter to her. She was most proud of the family that she created and > supported with her love, and yes, her criticisms (what Jewish mother > doesn't do that?!). She left behind a rich legacy - children and > grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the > candle of misery. With my family around me, I told God how angry I was that > my Mom had to suffer at the beginning of her life during the Holocaust, and > at the end of her life, having been stricken with Lewy Body Dementia (LBD) > at about 66 years old, for at least the last 12 years. The accompanying > Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to > take care of Mom on Saturdays. I've had to take off from work many times to > get stuff done. We've had to run up to the Bronx some evenings just to make > sure that the phone was put back in the cradle, so she could receive calls. > We live on Long Island, and the ride took anywhere from 35 minutes to over > an hour, depending on traffic and the time of day. Those of you that live > in NY know what a pain in the neck the Whitestone and Throgs Neck bridge > can be, particularly during rush hour. We are also dealing with my father > in law's advancing Alzheimer's - he is 92 years old, and is probably > mid-stage. He is not at home, but in a senior hotel with an aide, and it is > working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go > out, or when we didn't have to be anywhere, we were happy to just be at > home to recoup our strength - mental more than physical. One person got > very angry with me because I wouldn't bring her to visit my Mom in her late > stage of this disease. My Mom wouldn't have wanted anyone to see her like > that. > > When I reflect back on these last 12 or so years, I realize that I would > do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to > stay at home until the very end, and I am grateful we were able to grant > her wish. My aunt was the primary caregiver, but we had aides in the house > for most of the day for quite a while now. I had Calvary at the house for > the last few months, and they were really a Godsend; if you need hospice in > NY, they are the people to call. They have a wound care center, too, that > is just incredible -staffed with wonderful, knowledgeable people that are > so kind and caring. Feel free to contact me individually if you want > information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to > the day after her own mother passed away. I like to think that my Grandma > came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to > all the wonderful people who contributed to this yahoo group, and helped me > in so many ways in my efforts to help my Mom get through this. From > information to emotional support, I always knew I could come here and ask a > question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What > a godsend you have been, Norma, and I am lucky to consider you a friend, > too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Hello Helene, Helene, what a wake up call this morning from you to the group. I want to offer you my deepest condolences on the passing of your dear Mom from this dreaded disease. I have been a part of this board for several years and have always benefited from your posts and especially appreciated your answers to some of my most dire questions and especially being there for me on the occasions that there were no good answers. Your mother has always sounded a lot like mine...the same age... ethnic background and upbringing and certainly the same value for family. I know you have been a wonderful daughter to her and your post speaks to your endless devotion to your dear mother's every need even being able to keep her at home till the end. I hope that commitment to her care gives you comfort in these difficult days. Please know that my prayers and well wishes are with you and your family as you face this major loss. I hope now you will finally be able to have some peace as you begin to let in the memories of your mom in better days. Sending you Big Bronx Hugs, Judy > ** > > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at > her home in the Bronx (NY) on Saturday morning, August 18th. She died > peacefully in her sleep, and for that we are grateful. It had gotten to the > point where chewing was often something that did not happen, and sometimes > swallowing was an issue, but we were still able to get food into her. I am > grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal > feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who > endured so much in her lifetime, yet worried about everyone around her > before she worried about herself. She fought the good fight with every > breath she took. She didn't have many physical posessions, but that didn't > matter to her. She was most proud of the family that she created and > supported with her love, and yes, her criticisms (what Jewish mother > doesn't do that?!). She left behind a rich legacy - children and > grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the > candle of misery. With my family around me, I told God how angry I was that > my Mom had to suffer at the beginning of her life during the Holocaust, and > at the end of her life, having been stricken with Lewy Body Dementia (LBD) > at about 66 years old, for at least the last 12 years. The accompanying > Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to > take care of Mom on Saturdays. I've had to take off from work many times to > get stuff done. We've had to run up to the Bronx some evenings just to make > sure that the phone was put back in the cradle, so she could receive calls. > We live on Long Island, and the ride took anywhere from 35 minutes to over > an hour, depending on traffic and the time of day. Those of you that live > in NY know what a pain in the neck the Whitestone and Throgs Neck bridge > can be, particularly during rush hour. We are also dealing with my father > in law's advancing Alzheimer's - he is 92 years old, and is probably > mid-stage. He is not at home, but in a senior hotel with an aide, and it is > working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go > out, or when we didn't have to be anywhere, we were happy to just be at > home to recoup our strength - mental more than physical. One person got > very angry with me because I wouldn't bring her to visit my Mom in her late > stage of this disease. My Mom wouldn't have wanted anyone to see her like > that. > > When I reflect back on these last 12 or so years, I realize that I would > do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to > stay at home until the very end, and I am grateful we were able to grant > her wish. My aunt was the primary caregiver, but we had aides in the house > for most of the day for quite a while now. I had Calvary at the house for > the last few months, and they were really a Godsend; if you need hospice in > NY, they are the people to call. They have a wound care center, too, that > is just incredible -staffed with wonderful, knowledgeable people that are > so kind and caring. Feel free to contact me individually if you want > information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to > the day after her own mother passed away. I like to think that my Grandma > came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to > all the wonderful people who contributed to this yahoo group, and helped me > in so many ways in my efforts to help my Mom get through this. From > information to emotional support, I always knew I could come here and ask a > question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What > a godsend you have been, Norma, and I am lucky to consider you a friend, > too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Dear Helene,  Sending condolences to you and your family. Your mom has done a brave fight and I am so glad it ended peacefully. Now the grieving starts all over again. You will probably find a big hole in your life for a while. It has been a long fight. We are still here for you , through it all.  Hugs,  Donna R [ LBDcaregivers ] sad news from NY  Hello all, I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. I am numb... but with every day it gets a bit easier. It is a very surreal feeling. My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions , but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. When we got home from the cemetary , I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia ( LBD ) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. And, a special thanks to Norma Loeb , the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. Sorry for the length of this email..... Sending love to you all, Helene in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Helene, My condolences to you and your family on the passing of your mom. You wrote a lovely tribute to her. Sending you all strength. Courage From: hgm54 Sent: Wednesday, August 22, 2012 7:18 AM To: LBDcaregivers Subject: sad news from NY Hello all, I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. I am numb... but with every day it gets a bit easier. It is a very surreal feeling. My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. Sorry for the length of this email..... Sending love to you all, Helene in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Helene, My condolences to you and your family on the passing of your mom. You wrote a lovely tribute to her. Sending you all strength. Courage From: hgm54 Sent: Wednesday, August 22, 2012 7:18 AM To: LBDcaregivers Subject: sad news from NY Hello all, I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. I am numb... but with every day it gets a bit easier. It is a very surreal feeling. My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. Sorry for the length of this email..... Sending love to you all, Helene in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 My Dearest Helene, My heart aches for you! I am so sorry to hear of the passing of your beloved mom. You were such a wonderful daughter and I too appreciate all the advice and support you have given me! Hope you find comfort in knowing that your precious mom is no longer suffering. There will be many times you will break down in tears, but it does get a little easier as time goes by. I'm glad you're family has been there to support you. Unfortunately, not everyone is as lucky. It will not be easy, but take time now for you. It's been two and a half years since my daddy passed away and I still feel like a robot going through the motions, but please try! I will keep you, your mommy and your family in my prayers. I am here for you if you need me. (I don't know if you remember, but I live in Manhattan.) Sending you big, 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) > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. > > When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 My Dearest Helene, My heart aches for you! I am so sorry to hear of the passing of your beloved mom. You were such a wonderful daughter and I too appreciate all the advice and support you have given me! Hope you find comfort in knowing that your precious mom is no longer suffering. There will be many times you will break down in tears, but it does get a little easier as time goes by. I'm glad you're family has been there to support you. Unfortunately, not everyone is as lucky. It will not be easy, but take time now for you. It's been two and a half years since my daddy passed away and I still feel like a robot going through the motions, but please try! I will keep you, your mommy and your family in my prayers. I am here for you if you need me. (I don't know if you remember, but I live in Manhattan.) Sending you big, 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) > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. > > When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 I am so sorry Helene. Losing a parent is so difficult and to lose someone you worked so hard to help has to be very hard as well. You and your family are in my thoughts and prayers. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of hgm54 Sent: Wednesday, August 22, 2012 4:18 AM To: LBDcaregivers Subject: sad news from NY Hello all, I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. I am numb... but with every day it gets a bit easier. It is a very surreal feeling. My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. Sorry for the length of this email..... Sending love to you all, Helene in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 I am so sorry Helene. Losing a parent is so difficult and to lose someone you worked so hard to help has to be very hard as well. You and your family are in my thoughts and prayers. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of hgm54 Sent: Wednesday, August 22, 2012 4:18 AM To: LBDcaregivers Subject: sad news from NY Hello all, I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. I am numb... but with every day it gets a bit easier. It is a very surreal feeling. My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. Sorry for the length of this email..... Sending love to you all, Helene in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Thanks for sharing your mother's wonderful legacy. I'm at the early stages and am so encourages when I hear the love from others who have battled LBD so long. God Bless. Janet (55) LO (63) dx a month ago but probably has had since 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Thanks for sharing your mother's wonderful legacy. I'm at the early stages and am so encourages when I hear the love from others who have battled LBD so long. God Bless. Janet (55) LO (63) dx a month ago but probably has had since 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2012 Report Share Posted August 22, 2012 Thanks for sharing your mother's wonderful legacy. I'm at the early stages and am so encourages when I hear the love from others who have battled LBD so long. God Bless. Janet (55) LO (63) dx a month ago but probably has had since 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2012 Report Share Posted August 23, 2012 Helene: You have been the best of daughters, you loved your mother, cared for her and even though you were living your own life and sharing hers, you still found time to come to us with helpful suggestions and advice. I hope you will feel the warmth surround you as you get used to life without your mother. Just remember that surely she must be in a better place and will be watching over you from above. Love and best wishes for peace in the days ahead. Hugs too! 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 September 1, 2012 Report Share Posted September 1, 2012 Helene -- please accept my belated condolences on the passing of your mother. I'm glad she went peacefully and amazed at all the work you did to allow her to stay at home all these years. Take the time you need to grieve and come here to vent whenever you need... we're here for you for that journey as well. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2012 Report Share Posted September 1, 2012 Helene -- please accept my belated condolences on the passing of your mother. I'm glad she went peacefully and amazed at all the work you did to allow her to stay at home all these years. Take the time you need to grieve and come here to vent whenever you need... we're here for you for that journey as well. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2012 Report Share Posted September 1, 2012 Helene -- please accept my belated condolences on the passing of your mother. I'm glad she went peacefully and amazed at all the work you did to allow her to stay at home all these years. Take the time you need to grieve and come here to vent whenever you need... we're here for you for that journey as well. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2012 Report Share Posted September 2, 2012 Helene, condolences on the loss of your mother. May she rest in peace. Sending much love and hugs, Tania (Australia. > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. > > When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2012 Report Share Posted September 2, 2012 Helene, condolences on the loss of your mother. May she rest in peace. Sending much love and hugs, Tania (Australia. > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. > > When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2012 Report Share Posted September 2, 2012 Helene, condolences on the loss of your mother. May she rest in peace. Sending much love and hugs, Tania (Australia. > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. > > When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2012 Report Share Posted September 2, 2012 What a beautiful send-off Helene. God bless all of you who are committed to a family member with LBD. It changes your life forever. As I lie in my pool yesterday, alone on a float, a free moment of thought so rare, I began to cry thinking about how this house was run by my Mom for years. Now I am alone, without her and her stories and advice. I never felt so alone. Now I have no one that I trust the way I trusted her to share my innermost thoughts. For someone who is single, it makes you think about life in a way you never did - you feel the person who knew you most is leaving Earth with all things about you and no one will ever know you the way she did. I get depressed from time to time, wishing I could join her when she leaves. Then I know, God has work for me to do here and he would not have taken my Mom from me (she is alive, but in my mind, she is already gone) unless he had plans for me to do something else, that being alone could only force me to grow and move beyond my own limits without the strength of my Mom. I used to tell God, " please don't take my Mom from me. " She is the only person I really protected. For him to take her from me, means that my growth has to come from within. This is what I tell myself, for if I did not, I would go mad. Family members now take stabs at my Mom, and all I can do is listen and then tell them to STOP. It is horrifying that people want to tell me the bad she did in life, when all I can remember is the good. It is shameful, the people coming forward. I now don't want to have a funeral for her, when her time comes, because I feel the people don't deserve it. The final goodbyes are for the people that love her. My Uncles showed her no respect at all during her transformation from a butterfly to a moth. As power of attorney and Executrix of her estate, I am in the position to ensure that those that abandoned her feel the void of her existence. I struggle between depression and maddening anger. It is so hard for me, because I lived with my Mom. Thank God I have my Father still with me. He is 79 and Mom is 70. My Dad tells me, " I am here because she is still alive. " This only makes me remember that, he wants to be with her forever. I know, intuitively, he is going to leave with her soon after she leaves. With this horrible economy, I have lost jobs and now am working at the worst job ever in my life, just to keep our family home afloat. I feel as if, this is a punishment or lesson to be more positive, that I am learning. I even lost an EEOC case with my former employer who fired me, because I was late for work, took off time and other times my mood was off because of caregiver stress. My career has taken a huge hit during the last 4 years, and at 44, my career is all that I have. I don't have children or a husband (yet). I have a Father suffering bipolar illness, which makes me even more irascible at times, because he is all that I have to get me by during this time. I always said to Mom in life, " Mom, please don't leave me alone with Dad. " If is amazing how, your fears become your plight! I am making it, somehow, I put it to God and my ancestors in heaven, and ask for strength to fight a battle with no victory. God bless you all. I just felt like sharing today when moved by Helene's wonderful story. Bless you all, Re: sad news from NY Helene, condolences on the loss of your mother. May she rest in peace. Sending much love and hugs, Tania (Australia. > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. > > When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2012 Report Share Posted September 2, 2012 What a beautiful send-off Helene. God bless all of you who are committed to a family member with LBD. It changes your life forever. As I lie in my pool yesterday, alone on a float, a free moment of thought so rare, I began to cry thinking about how this house was run by my Mom for years. Now I am alone, without her and her stories and advice. I never felt so alone. Now I have no one that I trust the way I trusted her to share my innermost thoughts. For someone who is single, it makes you think about life in a way you never did - you feel the person who knew you most is leaving Earth with all things about you and no one will ever know you the way she did. I get depressed from time to time, wishing I could join her when she leaves. Then I know, God has work for me to do here and he would not have taken my Mom from me (she is alive, but in my mind, she is already gone) unless he had plans for me to do something else, that being alone could only force me to grow and move beyond my own limits without the strength of my Mom. I used to tell God, " please don't take my Mom from me. " She is the only person I really protected. For him to take her from me, means that my growth has to come from within. This is what I tell myself, for if I did not, I would go mad. Family members now take stabs at my Mom, and all I can do is listen and then tell them to STOP. It is horrifying that people want to tell me the bad she did in life, when all I can remember is the good. It is shameful, the people coming forward. I now don't want to have a funeral for her, when her time comes, because I feel the people don't deserve it. The final goodbyes are for the people that love her. My Uncles showed her no respect at all during her transformation from a butterfly to a moth. As power of attorney and Executrix of her estate, I am in the position to ensure that those that abandoned her feel the void of her existence. I struggle between depression and maddening anger. It is so hard for me, because I lived with my Mom. Thank God I have my Father still with me. He is 79 and Mom is 70. My Dad tells me, " I am here because she is still alive. " This only makes me remember that, he wants to be with her forever. I know, intuitively, he is going to leave with her soon after she leaves. With this horrible economy, I have lost jobs and now am working at the worst job ever in my life, just to keep our family home afloat. I feel as if, this is a punishment or lesson to be more positive, that I am learning. I even lost an EEOC case with my former employer who fired me, because I was late for work, took off time and other times my mood was off because of caregiver stress. My career has taken a huge hit during the last 4 years, and at 44, my career is all that I have. I don't have children or a husband (yet). I have a Father suffering bipolar illness, which makes me even more irascible at times, because he is all that I have to get me by during this time. I always said to Mom in life, " Mom, please don't leave me alone with Dad. " If is amazing how, your fears become your plight! I am making it, somehow, I put it to God and my ancestors in heaven, and ask for strength to fight a battle with no victory. God bless you all. I just felt like sharing today when moved by Helene's wonderful story. Bless you all, Re: sad news from NY Helene, condolences on the loss of your mother. May she rest in peace. Sending much love and hugs, Tania (Australia. > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. > > When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2012 Report Share Posted September 2, 2012 What a beautiful send-off Helene. God bless all of you who are committed to a family member with LBD. It changes your life forever. As I lie in my pool yesterday, alone on a float, a free moment of thought so rare, I began to cry thinking about how this house was run by my Mom for years. Now I am alone, without her and her stories and advice. I never felt so alone. Now I have no one that I trust the way I trusted her to share my innermost thoughts. For someone who is single, it makes you think about life in a way you never did - you feel the person who knew you most is leaving Earth with all things about you and no one will ever know you the way she did. I get depressed from time to time, wishing I could join her when she leaves. Then I know, God has work for me to do here and he would not have taken my Mom from me (she is alive, but in my mind, she is already gone) unless he had plans for me to do something else, that being alone could only force me to grow and move beyond my own limits without the strength of my Mom. I used to tell God, " please don't take my Mom from me. " She is the only person I really protected. For him to take her from me, means that my growth has to come from within. This is what I tell myself, for if I did not, I would go mad. Family members now take stabs at my Mom, and all I can do is listen and then tell them to STOP. It is horrifying that people want to tell me the bad she did in life, when all I can remember is the good. It is shameful, the people coming forward. I now don't want to have a funeral for her, when her time comes, because I feel the people don't deserve it. The final goodbyes are for the people that love her. My Uncles showed her no respect at all during her transformation from a butterfly to a moth. As power of attorney and Executrix of her estate, I am in the position to ensure that those that abandoned her feel the void of her existence. I struggle between depression and maddening anger. It is so hard for me, because I lived with my Mom. Thank God I have my Father still with me. He is 79 and Mom is 70. My Dad tells me, " I am here because she is still alive. " This only makes me remember that, he wants to be with her forever. I know, intuitively, he is going to leave with her soon after she leaves. With this horrible economy, I have lost jobs and now am working at the worst job ever in my life, just to keep our family home afloat. I feel as if, this is a punishment or lesson to be more positive, that I am learning. I even lost an EEOC case with my former employer who fired me, because I was late for work, took off time and other times my mood was off because of caregiver stress. My career has taken a huge hit during the last 4 years, and at 44, my career is all that I have. I don't have children or a husband (yet). I have a Father suffering bipolar illness, which makes me even more irascible at times, because he is all that I have to get me by during this time. I always said to Mom in life, " Mom, please don't leave me alone with Dad. " If is amazing how, your fears become your plight! I am making it, somehow, I put it to God and my ancestors in heaven, and ask for strength to fight a battle with no victory. God bless you all. I just felt like sharing today when moved by Helene's wonderful story. Bless you all, Re: sad news from NY Helene, condolences on the loss of your mother. May she rest in peace. Sending much love and hugs, Tania (Australia. > > Hello all, > > I am writing to let you know that my Mom has won her battle with LBD at her home in the Bronx (NY) on Saturday morning, August 18th. She died peacefully in her sleep, and for that we are grateful. It had gotten to the point where chewing was often something that did not happen, and sometimes swallowing was an issue, but we were still able to get food into her. I am grateful for that as well. > > I am numb... but with every day it gets a bit easier. It is a very surreal feeling. > > My mom was this little woman (literally - not more than 4 foot 10), who endured so much in her lifetime, yet worried about everyone around her before she worried about herself. She fought the good fight with every breath she took. She didn't have many physical posessions, but that didn't matter to her. She was most proud of the family that she created and supported with her love, and yes, her criticisms (what Jewish mother doesn't do that?!). She left behind a rich legacy - children and grandchildren that are good and decent human beings. > > When we got home from the cemetary, I lit my 7 day candle, what I call the candle of misery. With my family around me, I told God how angry I was that my Mom had to suffer at the beginning of her life during the Holocaust, and at the end of her life, having been stricken with Lewy Body Dementia (LBD) at about 66 years old, for at least the last 12 years. The accompanying Parkinsons added insult to injury. > > For many many years, I've been doing cooking on Fridays, and going up to take care of Mom on Saturdays. I've had to take off from work many times to get stuff done. We've had to run up to the Bronx some evenings just to make sure that the phone was put back in the cradle, so she could receive calls. We live on Long Island, and the ride took anywhere from 35 minutes to over an hour, depending on traffic and the time of day. Those of you that live in NY know what a pain in the neck the Whitestone and Throgs Neck bridge can be, particularly during rush hour. We are also dealing with my father in law's advancing Alzheimer's - he is 92 years old, and is probably mid-stage. He is not at home, but in a senior hotel with an aide, and it is working out very well for him. > > We lost touch with a lot of people, simply because we weren't free to go out, or when we didn't have to be anywhere, we were happy to just be at home to recoup our strength - mental more than physical. One person got very angry with me because I wouldn't bring her to visit my Mom in her late stage of this disease. My Mom wouldn't have wanted anyone to see her like that. > > When I reflect back on these last 12 or so years, I realize that I would do it all again for my Mom (and my aunt) in a heartbeat. My Mom wanted to stay at home until the very end, and I am grateful we were able to grant her wish. My aunt was the primary caregiver, but we had aides in the house for most of the day for quite a while now. I had Calvary at the house for the last few months, and they were really a Godsend; if you need hospice in NY, they are the people to call. They have a wound care center, too, that is just incredible -staffed with wonderful, knowledgeable people that are so kind and caring. Feel free to contact me individually if you want information. > > I am grateful that she was able to die in peace, in her sleep, 26 years to the day after her own mother passed away. I like to think that my Grandma came to get her and bring her home. > > Thank you and Donna R, for all the work that you do. Thank you to all the wonderful people who contributed to this yahoo group, and helped me in so many ways in my efforts to help my Mom get through this. From information to emotional support, I always knew I could come here and ask a question, or vent my feelings. > > And, a special thanks to Norma Loeb, the NY/LI support group leader. What a godsend you have been, Norma, and I am lucky to consider you a friend, too. > > Sorry for the length of this email..... > > Sending love to you all, > Helene in NY > Quote Link to comment Share on other sites More sharing options...
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