Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Dear Jan, Sorry to hear about Jim. You are not that far from me; let me know if there is anything I can do to help. You were very helpful and informative when we met at Starbucks several months ago. Take care of yourself, Teri Cornelius Subject: Hi All To: LBDcaregivers Date: Friday, January 14, 2011, 9:56 AM  Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Thank you Teri, my emotions are off the wall right now. I feel helpless for the first time that I can not help Jim. I would love to get together with you again for coffee at Starbucks. Maybe we can set a date to meet again sometime. I enjoyed our time together. Jan : ) ________________________________ To: LBDcaregivers Sent: Fri, January 14, 2011 11:03:51 AM Subject: Re: Hi All  Dear Jan, Sorry to hear about Jim. You are not that far from me; let me know if there is anything I can do to help. You were very helpful and informative when we met at Starbucks several months ago. Take care of yourself, Teri Cornelius Subject: Hi All To: LBDcaregivers Date: Friday, January 14, 2011, 9:56 AM  Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 jan, my firend, we are praying for you adn him  i am here lurking anytime you needf me hugs. sharon Subject: Hi All To: LBDcaregivers Date: Friday, January 14, 2011, 11:56 AM  Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Janet, I am new to the group but just wanted to say that I am so sorry to hear about Jim's condition, and what it is putting you through. You're in our thoughts. Lori Hi All Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Jan, Sending you a huge hug and much strength. I hate what this damned disease does to people. We don’t want them to suffer but we don’t want them to go either. I wish I had the words so instead I send my love and support. Courage From: Janet Colello Sent: Friday, January 14, 2011 12:56 PM To: LBDcaregivers Subject: Hi All Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Hi Jan, I am a lurker most of the time and only comment when I feel someone needs a little info about hospice. My Dad is 81 and has LBD. My Mom is the primary CG. He's probably had it for at least 5 years, but not diagnosed until the last 2. I'm a nurse and I work in hospice. You could really benefit from the assistance that hospice gives,even now. We have had patients for as long as 3 years. Sometimes this disease or other diseases that are classified as terminal, have a long period of decline. As long as the nurse can chart declines,the hospice can keep recertifying the patient. There are so many people that could be of assistance to you. My Dad is also a hospice patient. Hospice provides the patient and family the best quality of care during this stressful time. There is also respite care, once a month in a nursing home or hospital,so the caregiver can have a rest. I've seen hospice help so many people. It is so sad when we admit a patient and only have them for a week. We always know we could have helped the family so much more, if they had called earlier. I hope you don't mind my two cents worth. You just sounded as though you could use hospice at this time. Will be praying for Jim and you,Jan during this difficult time. Most Sincerely, s Daughter of Ralph, 81 yrs old with LBD,now 5 years. > > > Subject: Hi All > To: LBDcaregivers > Date: Friday, January 14, 2011, 9:56 AM > >  > > Dear friends, > > I started in this group in 2003 and was a regular until 2006 when Jim went into > > a nursing home. Some of you know me and some of you don't. I answer a few posts > > now and then and I lurk and try to keep up on the latest news. > > Jim is not doing well. He has swallowing issues and has stopped eating and has > > lost a lot of weight. He also has horrible congestion. I hate winters and > > sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they > > > are not sure. They faxed the information to the doctor. I have a feeling it will > > > not be treated since Jim put in his Health Directive many years ago when he was > > in good health and sound mind that he did not want to be treated for Pneumonia > > if he had severe dementia and it was to prolong his life and last May when Jim > > was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter > > > with the POA for Jim's health and the nurse decided not to treat it next > > time. Jim's daughter usually follows his wishes in the Health Directive. I have > > been able to request treatment in the past for Jim, but his daughter has the > > last word on the decisions. > > I will call in Hospice if it will not be treated. > > My emotions are all over the place seeing Jim like this. I have prepared and > > known his time would come, but truly I don't know how you can prepare for > > something like this. I will be scared and lost without him. How do you get > > through it?! I want to hang onto him, but he is losing the battle, I can sense > > it. He has been a fighter and come through so many times that I thought I was > > going to lose him, but this time I don't think there is any turning back. He is > > > very weak from all the loss of weight. > > Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into > > full bloom in 2000, the neurologist was not familiar with Lewy Body at that > > time. > > For those that remember I had an interview back in August by an interviewer for > > a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the > > article this month, but it is in Dutch, because the interviewer was from > > Amsterdam. I have a resident's daughter at the nursing home translating it for > > me, they are from Amsterdam. It is 3 pages long. I tried the online translation > > to English, but the English is very poor that it is almost as bad as trying to > > read the Dutch. Hahahaha After it is translated, I will scan a copy to > > > and hopefully, she can get it across to all of you. > > Last July the interviewer contacted the LBDA, as you might remember, and > > and put the word out that he would be in the San Francisco Bay Area and > > > needed someone that he could interview in August on Capgras for the > > " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted > > him and said I could do it, so he met me at the nursing home where my husband is > > > residing. The interview was 2 1/2 hours long. He was very easy to talk to, he > > had his tape recorder and asked questions and I would answer and ramble on. LOL > > I told him Capgras was a symptom within Lewy Body that some have and some > > don't and that it doesn't vary that much or happen everyday and that I could not > > > make a page for him in the magazine with just Capgras alone. I told him about > > Lewy Body too, so he could connect it with Capgras, but I am not sure how the > > article came out since he was assigned to do Capgras only and I have a feeling > > he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll > > > know after it is translated how he told the story. > > Jan Colello > > San Francisco Bay Area, California > > husband, Jim dx w/LBD 2003 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thank you so much Lori for your kind words. Jan Colello husband, Jim dx w/LBD/PDD 2003 ________________________________ To: LBDcaregivers Sent: Fri, January 14, 2011 6:05:15 PM Subject: Re: Hi All  Janet, I am new to the group but just wanted to say that I am so sorry to hear about Jim's condition, and what it is putting you through. You're in our thoughts. Lori Hi All Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thank you so much Sharon. I really appreciate the prayers, they really do work, as I have seen many times. I hope you are doing well at this time. It turns out Jim has a UTI and Aspiration Pneumonia. He has lost a tremendous amount of weight within this week, his arms and legs are bones. I am still living on Hope, because only one week ago Jim was eating well. He is on pureed and thickened liquids for swallowing issues, but he was eating everything. In a week, he went from eating to no eating all this week. I hope it is due to he feels so lousy he doesn't feel like swallowing. He was put on an antibiotic that covers both UTI and Pneumonia, Levaquin, I know there is a big warning about this antibiotic, but it is the best between two evils. Not taking it or taking it. The thing is, Jim is not swallowing anyway. He was given his first antibiotic this evening and either held it in his mouth or spit it out. The nurse let me try and I got him to swallow about half of the medication given. I HATE THIS DREADED DISEASE!!! Thanks again Sharon, it's good to hear from you. Love and Hugs, Jan  ________________________________ To: LBDcaregivers Sent: Fri, January 14, 2011 11:52:45 AM Subject: Re: Hi All  jan, my firend, we are praying for you adn him  i am here lurking anytime you needf me hugs. sharon Subject: Hi All To: LBDcaregivers Date: Friday, January 14, 2011, 11:56 AM  Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Oh Jan, this will be so difficult for you. Not only has Jim been a fighter but so have you. It will be very foreign for you to give in like you are being forced to do. I am sorry for what you are going through, will be going through. We can never be truly prepared for what comes next as we don't know just what the end will bring. Please come and share if that helps. (((hugs))) to you. > > Dear friends, > I started in this group in 2003 and was a regular until 2006 when Jim went into > a nursing home. Some of you know me and some of you don't. I answer a few posts > now and then and I lurk and try to keep up on the latest news. > Jim is not doing well. He has swallowing issues and has stopped eating and has > lost a lot of weight. He also has horrible congestion. I hate winters and > sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they > are not sure. They faxed the information to the doctor. I have a feeling it will > not be treated since Jim put in his Health Directive many years ago when he was > in good health and sound mind that he did not want to be treated for Pneumonia > if he had severe dementia and it was to prolong his life and last May when Jim > was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter > with the POA for Jim's health and the nurse decided not to treat it next > time. Jim's daughter usually follows his wishes in the Health Directive. I have > been able to request treatment in the past for Jim, but his daughter has the > last word on the decisions. > I will call in Hospice if it will not be treated. > My emotions are all over the place seeing Jim like this. I have prepared and > known his time would come, but truly I don't know how you can prepare for > something like this. I will be scared and lost without him. How do you get > through it?! I want to hang onto him, but he is losing the battle, I can sense > it. He has been a fighter and come through so many times that I thought I was > going to lose him, but this time I don't think there is any turning back. He is > very weak from all the loss of weight. > Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into > full bloom in 2000, the neurologist was not familiar with Lewy Body at that > time. > For those that remember I had an interview back in August by an interviewer for > a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the > article this month, but it is in Dutch, because the interviewer was from > Amsterdam. I have a resident's daughter at the nursing home translating it for > me, they are from Amsterdam. It is 3 pages long. I tried the online translation > to English, but the English is very poor that it is almost as bad as trying to > read the Dutch. Hahahaha After it is translated, I will scan a copy to > and hopefully, she can get it across to all of you. > Last July the interviewer contacted the LBDA, as you might remember, and > and put the word out that he would be in the San Francisco Bay Area and > needed someone that he could interview in August on Capgras for the > " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted > him and said I could do it, so he met me at the nursing home where my husband is > residing. The interview was 2 1/2 hours long. He was very easy to talk to, he > had his tape recorder and asked questions and I would answer and ramble on. LOL > I told him Capgras was a symptom within Lewy Body that some have and some > don't and that it doesn't vary that much or happen everyday and that I could not > make a page for him in the magazine with just Capgras alone. I told him about > Lewy Body too, so he could connect it with Capgras, but I am not sure how the > article came out since he was assigned to do Capgras only and I have a feeling > he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll > know after it is translated how he told the story. > Jan Colello > San Francisco Bay Area, California > husband, Jim dx w/LBD 2003 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Jan: I have been where you are and feel that I know what you are going through. My oldest daughter told me the other day that she thought Dad knew that he was ready to go and just quit eating. I felt it was just the course of the LBD and it was his time to go. Either way, I am sure Ray wouldn't have wanted to continue any longer in the shape he was in. Comfort yourself with the knowledge that you have done every thing you could to care for him, show your love for him in every way you could and advocated for him everytime the opportunity arose. We lived our vows to the end. We also realize that he will be in a better place and when we meet them again, they will no longer be sick! As you have had the strength to suffer along with him every step of the way, you will find the strength to find your way through the end time. It has been two years this spring and the tears came back as I read your post because the things you are seeing, are the things I saw as he faded away. Now, I think often of the things he said and did. I smile often as I tell a story or remember a good time we had. You may find as I did, that I did a lot of my grieving long before he died. Once I realized there were no miracle drugs, or treatments or cures --that he was on steep slope fading away, I cried and grieved him 6 months before he died. I did not know that is what was going on, but afterward, I realized and really handled everything very well. Jan, please know that you and Jim are in my prayers and thoughts as you continue down this difficult road. God Bless you both!! Love, 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. 'Love is not finding someone to live with; it's finding someone you don't want to live without.' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Hi Jan I'm sorry to read about Jim's decline and your emotional pain. It is a hard thing to face, no matter how we think we have come to terms with it. You no doubt have tried to mentally prepare yourself again and again but it's just not possible to avoid the pain of the loss of a spouse. Do you have family and friends around who you can talk with? Try to give yourself plenty of emotional latitude as you go through this and talk to people if you have someone close - a friend or friends, family members. Having a few people to talk with will help. Sometimes it seems it's a matter of getting through each day one at a time, even an hour at a time, and then finally it starts to get easier again. I think hospice might be helpful for you as well and often they can refer family to support groups or counseling. If the medical poa declines to treat the pneumonia they SHOULD get hospice started for the benefit of all involved. It could be a terrifying thing to die from without someone experienced managing the issues of not being able to breath and that resulting panic. With hospice, who are experienced with this issue, he should be very comfortable. I am glad you will go ahead and get hospice in if it will not be treated. If they do decide to treat the pneumonia I suggest some effort with a speech pathologist to evaluate the swallowing trouble and devise measures to avoid aspiration which it sounds he could greatly benefit from due to his weight loss and now the pneumonia again. I am going through this now with my mil and have seen it as a quality of life issue. She still likes to eat and I'm trying to make it as safe for her to do so as possible. If they treat the pneumonia I am glad to elaborate on this for you. Wishing you much peace, Dorothy W Sonoma county, ca From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Janet Colello Sent: Friday, January 14, 2011 9:56 AM To: LBDcaregivers Subject: Hi All Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 [ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Dear Jan, I'm just going through the posts after returning from a day with my Mom. She is having great difficulty swallowing, and is also recovering from pneumonia. Yet, she is lucid, and can offer one word answers to questions. She offers up sentence, too, but most do not make sense. My heart breaks reading your posts about Jim. Yes, it feels like a bad dream... and yes, no matter how well prepared you think you are, you really aren't. You have been Jim's strength and rock for so long - I've admired you so much (and still do). May tomorrow be a better day for us all. Sending you love and strength from NY, Helene > > Thank you Leona, > I have read and tried to prepare myself for this time, but I am feeling helpless > and there is nothing I can do, but be there for Jim. It's very hard to watch him > shut down. He has lost so much weight, I don't think there is enough strength in > him to fight this anymore. He has been such a fighter and overcame so many > obstacles that could have brought him down. It's hard to see him this way. I > was with him until midnight last evening/this morning. > It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as > of last night that covers both, but he would not swallow the medication. Leona, > only a week ago he was eating his entire meals. I don't know if it is false > hope, but I am wishing that it is just that he feels so lousy he won't swallow, > but if he gets some antibiotic, he will start to feel better and swallow again, > but maybe I am just having false hope and this is it. I just can't get a grip on > this. No matter how much I have prepared for this moment, it is like I am having > a bad dream. Jim told me he was dying last night in a whispery voice. I feel > numb just thinking about the loss. A lab tech was in and did a blood test on Jim > yesterday to see if there is an infection in the blood. Jim is my hero, he is so > brave. This dreaded disease tears me apart. > I need to hear from people like you that have gone through this and survived. I > just can't imagine my life without Jim, but I know I will get through this and > move on, I just don't know how yet. > Thank you so much, I appreciate hearing from you. > Love and Hugs, > Jan > > Leona, this is so true: > ''Love is not finding someone to live with; it's finding someone you don't want > to live without. " > > > > > > > ________________________________ > > To: LBDcaregivers > Sent: Sat, January 15, 2011 10:27:52 AM > Subject: Re: Hi All > >  > Jan: I have been where you are and feel that I know what you are going > through. My oldest daughter told me the other day that she thought Dad knew > that he was ready to go and just quit eating. I felt it was just the course > of the LBD and it was his time to go. Either way, I am sure Ray wouldn't > have wanted to continue any longer in the shape he was in. Comfort yourself > with the knowledge that you have done every thing you could to care for him, > show your love for him in every way you could and advocated for him > everytime the opportunity arose. We lived our vows to the end. We also > realize that he will be in a better place and when we meet them again, they > will no longer be sick! As you have had the strength to suffer along with > him every step of the way, you will find the strength to find your way > through the end time. It has been two years this spring and the tears came > back as I read your post because the things you are seeing, are the things I > saw as he faded away. Now, I think often of the things he said and did. I > smile often as I tell a story or remember a good time we had. You may find > as I did, that I did a lot of my grieving long before he died. Once I > realized there were no miracle drugs, or treatments or cures --that he was > on steep slope fading away, I cried and grieved him 6 months before he died. > I did not know that is what was going on, but afterward, I realized and > really handled everything very well. Jan, please know that you and Jim are > in my prayers and thoughts as you continue down this difficult road. God > Bless you both!! Love, 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. > > ''Love is not finding someone to live with; it's finding someone you don't want > to live without " > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Jan, you are the picture of courage and perseverance. I lost my husband suddenly so I have not had the same experience but I am making it on the other side of Lewy. Lorraine > > Dear friends, > I started in this group in 2003 and was a regular until 2006 when Jim went into > a nursing home. Some of you know me and some of you don't. I answer a few posts > now and then and I lurk and try to keep up on the latest news. > Jim is not doing well. He has swallowing issues and has stopped eating and has > lost a lot of weight. He also has horrible congestion. I hate winters and > sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they > are not sure. They faxed the information to the doctor. I have a feeling it will > not be treated since Jim put in his Health Directive many years ago when he was > in good health and sound mind that he did not want to be treated for Pneumonia > if he had severe dementia and it was to prolong his life and last May when Jim > was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter > with the POA for Jim's health and the nurse decided not to treat it next > time. Jim's daughter usually follows his wishes in the Health Directive. I have > been able to request treatment in the past for Jim, but his daughter has the > last word on the decisions. > I will call in Hospice if it will not be treated. > My emotions are all over the place seeing Jim like this. I have prepared and > known his time would come, but truly I don't know how you can prepare for > something like this. I will be scared and lost without him. How do you get > through it?! I want to hang onto him, but he is losing the battle, I can sense > it. He has been a fighter and come through so many times that I thought I was > going to lose him, but this time I don't think there is any turning back. He is > very weak from all the loss of weight. > Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into > full bloom in 2000, the neurologist was not familiar with Lewy Body at that > time. > For those that remember I had an interview back in August by an interviewer for > a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the > article this month, but it is in Dutch, because the interviewer was from > Amsterdam. I have a resident's daughter at the nursing home translating it for > me, they are from Amsterdam. It is 3 pages long. I tried the online translation > to English, but the English is very poor that it is almost as bad as trying to > read the Dutch. Hahahaha After it is translated, I will scan a copy to > and hopefully, she can get it across to all of you. > Last July the interviewer contacted the LBDA, as you might remember, and > and put the word out that he would be in the San Francisco Bay Area and > needed someone that he could interview in August on Capgras for the > " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted > him and said I could do it, so he met me at the nursing home where my husband is > residing. The interview was 2 1/2 hours long. He was very easy to talk to, he > had his tape recorder and asked questions and I would answer and ramble on. LOL > I told him Capgras was a symptom within Lewy Body that some have and some > don't and that it doesn't vary that much or happen everyday and that I could not > make a page for him in the magazine with just Capgras alone. I told him about > Lewy Body too, so he could connect it with Capgras, but I am not sure how the > article came out since he was assigned to do Capgras only and I have a feeling > he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll > know after it is translated how he told the story. > Jan Colello > San Francisco Bay Area, California > husband, Jim dx w/LBD 2003 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2011 Report Share Posted January 16, 2011 jan, my dearest friend you are soooo sweet, with all that you have on your plate you are still worrying about me, we are ok so worry not, but thanks for caring like you do.  i have been following each post you write, with a heavy heart. jim and you together havce come thru when the chips are down, but since you feel this is so idfferent, i have been rpaying for your strenght as well. jan i konw you doont want jim to leave you. and i am so sorry that the lbd is rearing its ugly head. and i can only imagine waht you are gong thru, although 2 times on holidays now donnie has had severe health issues, one being the lung blood clot. and the ohter the fall on new years where we thought he was gong to be paralyzed for life. sigh.  anyway, jan, as hard as it is, and painful and lonely as it will be, you need to give jim permission to go ahead and wait for you on the other side. you know he loves you deeply, he has proved that by the way he has reacted over the years everyime you walk into his room, the many times that jan's bag of tircks has pulled him thru. he will worry about you and will not want to leave you unless he thinks you will be ok. i so hate to write those words my friend. but as we both know we both speak our minds toe ach other which is why we are such good friends.  i pray more for you adn jim. and please i am sending you private email with my phone numbers, if you need me you can call me. hugs. sharon Subject: Hi All To: LBDcaregivers Date: Friday, January 14, 2011, 11:56 AM  Dear friends, I started in this group in 2003 and was a regular until 2006 when Jim went into a nursing home. Some of you know me and some of you don't. I answer a few posts now and then and I lurk and try to keep up on the latest news. Jim is not doing well. He has swallowing issues and has stopped eating and has lost a lot of weight. He also has horrible congestion. I hate winters and sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they are not sure. They faxed the information to the doctor. I have a feeling it will not be treated since Jim put in his Health Directive many years ago when he was in good health and sound mind that he did not want to be treated for Pneumonia if he had severe dementia and it was to prolong his life and last May when Jim was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter with the POA for Jim's health and the nurse decided not to treat it next time. Jim's daughter usually follows his wishes in the Health Directive. I have been able to request treatment in the past for Jim, but his daughter has the last word on the decisions. I will call in Hospice if it will not be treated. My emotions are all over the place seeing Jim like this. I have prepared and known his time would come, but truly I don't know how you can prepare for something like this. I will be scared and lost without him. How do you get through it?! I want to hang onto him, but he is losing the battle, I can sense it. He has been a fighter and come through so many times that I thought I was going to lose him, but this time I don't think there is any turning back. He is very weak from all the loss of weight. Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into full bloom in 2000, the neurologist was not familiar with Lewy Body at that time. For those that remember I had an interview back in August by an interviewer for a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the article this month, but it is in Dutch, because the interviewer was from Amsterdam. I have a resident's daughter at the nursing home translating it for me, they are from Amsterdam. It is 3 pages long. I tried the online translation to English, but the English is very poor that it is almost as bad as trying to read the Dutch. Hahahaha After it is translated, I will scan a copy to and hopefully, she can get it across to all of you. Last July the interviewer contacted the LBDA, as you might remember, and and put the word out that he would be in the San Francisco Bay Area and needed someone that he could interview in August on Capgras for the " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted him and said I could do it, so he met me at the nursing home where my husband is residing. The interview was 2 1/2 hours long. He was very easy to talk to, he had his tape recorder and asked questions and I would answer and ramble on. LOL I told him Capgras was a symptom within Lewy Body that some have and some don't and that it doesn't vary that much or happen everyday and that I could not make a page for him in the magazine with just Capgras alone. I told him about Lewy Body too, so he could connect it with Capgras, but I am not sure how the article came out since he was assigned to do Capgras only and I have a feeling he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll know after it is translated how he told the story. Jan Colello San Francisco Bay Area, California husband, Jim dx w/LBD 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2011 Report Share Posted January 16, 2011 Jan, it is obvious how many here are with you in spirit. Hold onto that knowledge. And please take care of you too as you will need much strength getting through this terrible time. > > Hi Sandie, > I left Jim at midnight tonight and haven't gone to bed yet and it is 5:30AM. I > can't sleep, I am so worried about Jim. Sandie, Jim is so weak, he has no fat on > him, he is all bones. I can't even describe it, it is so sad to see. I am in > such deep sorrow. Jim has always been a fighter and bounced back many times when > I thought he was down, but this time I hate what I am sensing. He has never been > this weak or all bones, he has always had some amount of strength, but the > strength is not there now. He is giving up. I panicked tonight at the nursing > home. He would not wake up and did not respond when I yelled his name over and > over. Even in his down times before when he heard my voice, he would respond in > some way by opening his eyes or moving a hand, but nothing this time. I didn't > want to leave him tonight. > I am confused, are you saying to give Jim an empty cup or spoon/fork? He is so > weak, I don't think he would hold either one. I can try it today when I visit. > > Tonight and last night, he would not swallow his antibiotic, but I did get him > to swallow half of it on both nights. Do you think half is enough to help him a > little. He would fall asleep and not finish it. I give him a little at a time, > so he doesn't hold it in his mouth or spit it out. He seems to swallow if a > little bit at a time is given. It takes so long with a little at a time that he > falls asleep before it is gone. Maybe there is hope with only half given each > night. With LBD Less is Best : ) Oh, I wish!!! > > I was so %^ & **(((* & & mad tonight. The floor nurse told me they gave Jim an > ennama that morning. The first few years they were giving Jim an ennema and they > flushed everything he had out of him and now he is so thin, any nutrients he had > in him is gone. > In the beginning years, they flushed the sodium out of him with ennamas and he > was hospitalized with hyponatremia a sodium deficiency. Arghhhhhhhh!!!!! I > couldn't believe they would do that to him. I requested that they only use a > suppository after that and it has always worked for him, so I don't understand > this making him have diarrhea and not having anything in him when he is already > emaciated. > > Well, now it is 6AM, I should just stay up and surprise them early today at the > nursing home. I can hardly keep my eyes open now though. I think I need to get > some sleep. > Thanks Sandie for your suggestion and the prayers. I know from experience that > the prayers are answered and I am so thankful for them. > Huge Hugs, > Jan > > > > > ________________________________ > > To: LBDcaregivers > Sent: Sun, January 16, 2011 5:26:09 AM > Subject: Re: Re: Hi All > >  > Jan- Have you tried offering an empty utensil between bites or even a couple > times in a row. Even an empty glass after liquids are offered. Sometimes this > triggers swallowing. Although we lost parents and not a spouse, we were both > caregivers in the LBD journey. You are a strong person and have many people > sending prayers for more strength. I am sure your bag of goodies has brought Jim > through many struggles before and will help him as he goes through these days > ahead. Your heart is bigger than the state of California and the love you have > for Jim is an example for the rest of us to follow. I have never forgotten > hearing Jim's voice when we were in Ann Arbor, Michigan. Almost 3 years later I > am still grateful you honored us with Jim speaking to us. You are in our hearts > and prayers, always have been. I have sent up many prayers for you and Jim since > reading your post on this thread and will continue to do so. Big hugs from Iowa- > S > dad, Merle, passed from LBD 9-20-02, age 65 > mum, Jo, (New Zealand) passed from LBD 4-29-07, age 78 > > ----- Re: Hi All > > Jan: I have been where you are and feel that I know what you are going > through. My oldest daughter told me the other day that she thought Dad knew > that he was ready to go and just quit eating. I felt it was just the course > of the LBD and it was his time to go. Either way, I am sure Ray wouldn't > have wanted to continue any longer in the shape he was in. Comfort yourself > with the knowledge that you have done every thing you could to care for him, > show your love for him in every way you could and advocated for him > everytime the opportunity arose. We lived our vows to the end. We also > realize that he will be in a better place and when we meet them again, they > will no longer be sick! As you have had the strength to suffer along with > him every step of the way, you will find the strength to find your way > through the end time. It has been two years this spring and the tears came > back as I read your post because the things you are seeing, are the things I > saw as he faded away. Now, I think often of the things he said and did. I > smile often as I tell a story or remember a good time we had. You may find > as I did, that I did a lot of my grieving long before he died. Once I > realized there were no miracle drugs, or treatments or cures --that he was > on steep slope fading away, I cried and grieved him 6 months before he died. > I did not know that is what was going on, but afterward, I realized and > really handled everything very well. Jan, please know that you and Jim are > in my prayers and thoughts as you continue down this difficult road. God > Bless you both!! Love, 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. > > ''Love is not finding someone to live with; it's finding someone you don't want > to live without " > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2011 Report Share Posted January 16, 2011 Hi Jan I joined the group in 2006 and I have followed your journey with Jim. You have been so incredibly devoted and have done so many good things for Jim. I am sorry you are both struggling so now. I don't have words that will comfort you very much. Just know that I continue to think of you as I have over the years. Jan, I do agree with , the nurse who posted about hospice. They can help you now in many ways. We had hospice for my MIL and most recently for my childrens grandmother, my ex MIL but still a dear friend. She was 400 miles away, we made trips as often as possible, and we had a part time caregiver but we couldn't have gotten through the last 1 1/2 years without hospice. Give it a try. Hang on Jan, you can do this. Hugs & Mom Ginny now at board & care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2011 Report Share Posted January 16, 2011 Dear Jan, truly heartbreaking to hear this..You have been a wonderful fighter for your dear Jim..A true inspiration to us all.Sending prayers up for you and Jim for strength to endure the coming days and hopes that things turn for the better.You are in our thoughts Ron > > Dear friends, > I started in this group in 2003 and was a regular until 2006 when Jim went into > a nursing home. Some of you know me and some of you don't. I answer a few posts > now and then and I lurk and try to keep up on the latest news. > Jim is not doing well. He has swallowing issues and has stopped eating and has > lost a lot of weight. He also has horrible congestion. I hate winters and > sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but they > are not sure. They faxed the information to the doctor. I have a feeling it will > not be treated since Jim put in his Health Directive many years ago when he was > in good health and sound mind that he did not want to be treated for Pneumonia > if he had severe dementia and it was to prolong his life and last May when Jim > was in the hospital with Aspiration Pneumonia, it was treated and Jim's daughter > with the POA for Jim's health and the nurse decided not to treat it next > time. Jim's daughter usually follows his wishes in the Health Directive. I have > been able to request treatment in the past for Jim, but his daughter has the > last word on the decisions. > I will call in Hospice if it will not be treated. > My emotions are all over the place seeing Jim like this. I have prepared and > known his time would come, but truly I don't know how you can prepare for > something like this. I will be scared and lost without him. How do you get > through it?! I want to hang onto him, but he is losing the battle, I can sense > it. He has been a fighter and come through so many times that I thought I was > going to lose him, but this time I don't think there is any turning back. He is > very weak from all the loss of weight. > Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into > full bloom in 2000, the neurologist was not familiar with Lewy Body at that > time. > For those that remember I had an interview back in August by an interviewer for > a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the > article this month, but it is in Dutch, because the interviewer was from > Amsterdam. I have a resident's daughter at the nursing home translating it for > me, they are from Amsterdam. It is 3 pages long. I tried the online translation > to English, but the English is very poor that it is almost as bad as trying to > read the Dutch. Hahahaha After it is translated, I will scan a copy to > and hopefully, she can get it across to all of you. > Last July the interviewer contacted the LBDA, as you might remember, and > and put the word out that he would be in the San Francisco Bay Area and > needed someone that he could interview in August on Capgras for the > " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted > him and said I could do it, so he met me at the nursing home where my husband is > residing. The interview was 2 1/2 hours long. He was very easy to talk to, he > had his tape recorder and asked questions and I would answer and ramble on. LOL > I told him Capgras was a symptom within Lewy Body that some have and some > don't and that it doesn't vary that much or happen everyday and that I could not > make a page for him in the magazine with just Capgras alone. I told him about > Lewy Body too, so he could connect it with Capgras, but I am not sure how the > article came out since he was assigned to do Capgras only and I have a feeling > he made some of the Lewy Body issues into Capgras issues to fill the pages. I'll > know after it is translated how he told the story. > Jan Colello > San Francisco Bay Area, California > husband, Jim dx w/LBD 2003 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 Dear Jan, What an awful situation Jim is in with his roommate - it sounds like a real nightmare... I just keep sending up lots of prayers for your strength, and for Jim's. Sending hugs and love from NY, Helene > > > > Thank you Dorothy, but Jim is in the final stages where he can not swallow. He > > > has been on pureed for about a year and on thickened liquids. I was giving Jim > > > liquids with a syringe that I bought in the baby aisle at the pharmacy used to > > > give babies liquid medication to get liquids in him and he was swallowing it, > > > > but I was told by the staff at the nursing home, I could not use the syringe > >and > > > > they suggested to get a sippy cup. I laughed at that, because I told them Jim > > can not even suck on a straw, how is he going to use a sippy cup? You can't tip > > > > it to drink, it is made purposely not to spill when tipped. > > > > Jim has stopped eating all together, he does drink a little from a cup or I > > still sneak the syringe in and give him sips from that. I can control a little > > > drip at a time into his mouth with the syringe. Jim is not swallowing his > > antibiotic for Pneumonia and it is worse. > > Jim is all bones now and very weak. > > I appreciate all you suggestions, but they will not work for Jim since he can > >no > > > > longer swallow at all and will hold the food in his mouth or spit it out, but > > now he is too weak to even open his mouth for food, but he will sip from a cup > >a > > > > little. > > The staff at the facility would feed the people that need to be fed, I believe > > > they may have aspirated Jim, because they are on a schedule to get the people > > fed and out and sometimes give them too much at a time. I have seen it. I > >always > > > > made sure to be with Jim for dinner and help him, but I could not be there for > > > breakfast and lunch. > > I appreciate your concern and your help. > > Jan > > > > > > > > > > ________________________________ > > From: dsinouye <fullcircle@> > > To: LBDcaregivers > > Sent: Sun, January 16, 2011 5:14:32 PM > > Subject: RE: Re: Hi All > > > >  > > Jan I know you are doing all you can. Is someone feeding him and doing all the > > > work of getting the food/drink to his mouth so he can put his energy to > > eating/swallowing? I’m curious, did they ask you to get a sippy cup so it > > doesn’t spill if tipped over or because they thought he would be able to > >better > > > > suck the fluid out safely? If it’s the former reason it sounds like they are > > > leaving him on his own to eat/drink and that, as was explained to us, is the > > foremost reason people with these swallowing difficulties lose so much weight > > and aspirate. It takes a lot of energy to concentrate and get the food managed > > > in the mouth and a good swallow and then even a second or third swallow to > >clear > > > > around the airway so there isn’t residual around the edge of the windpipe > >that > > > > can fall in. I imagine he is very weak even more so with the infections. Can he > > > > manage a swallow if thickened liquid is spooned in? > > > > > > I’ll share what we are doing just in case it provides something of use to > >you. > > > > We are doing is pureeing food or cooking soft (soft mechanical diet) and > >someone > > > > has to take a spoon of food the right size, feed her, encourage to chew as > > needed, keeping a hand lightly on the back of the neck to 1) prevent the head > > from going back and 2) encourage chin downward for the swallow, then getting > >her > > > > to say something (asking a question what’s the dog doing, what does the food > > > taste like, etc.) to be sure the airway does not have the gurgly or raspy sound > > > > (other than normal). And then going to the next bite or drink. About 50% of the > > > > time we have to get another swallow to clear the airway because the flap that > > seals over the windpipe during a swallow does not seal off entirely and leaves > >a > > > > residual around the edge of the airpipe. We have been using a straw for liquids > > > > but she is not doing well with it †" the liquids go back into the cup, so now > > > back to thickened liquids out of a cup with a thin rim (easier on the mouth) > >but > > > > she cannot manage it so we are holding it and she is free to concentrate on the > > > > swallow part. > > > > > > Current speech pathologist told me that people will often stop eating/drinking > > > if they are having too much trouble with aspiration/choking especially if they > > > are left on their own to eat/drink. I’m not at all sure what level of care a > > > facility would provide with eating/drinking and perhaps this amount of > > assistance is more than they provide. > > > > > > If he cannot swallow at all a sippy cup will not help things. I would ask for > > the sp to re evaluate things asap and figure out what’s going on. > > > > I’m sorry, I know you are going through hell right now and wish there was > > something more I could offer. > > > > Dorothy > > > > From: LBDcaregivers [mailto:LBDcaregivers ] On > > Behalf Of Janet Colello > > Sent: Sunday, January 16, 2011 3:41 AM > > To: LBDcaregivers > > Subject: Re: Re: Hi All > > > > Hi Dorothy, > > The speech pathologist already evaluated Jim last summer and put him on pureed > > > foods, before that he was on mechanical soft foods. He was already on thickened > > > > liquids. They had a meeting with me last week and said to get him a sippy cup, > > > so he won't aspirate, but he had a hard time with a sippy cup, because it is > > also made not to spill when it tips over so if it is tipped up to drink, he > > can't get anything out of it unless he sucks on the tip, but he doesn't suck. I > > > > went back to the old way using an actual cup, but now he is not drinking or > > eating. He either holds it in his mouth or spits it out. I can't get it into > > him. > > Jan > > > > ________________________________ > > From: dsinouye <fullcircle@ <mailto:fullcircle%40sonic.net> > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > Sent: Sat, January 15, 2011 2:24:20 PM > > Subject: RE: Re: Hi All > > > > Jan, > > > > Can you get them to bring in a speech pathologist asap to help figure out how > > Jim can swallow (and eat and drink) more safely? Or has this already been done? > > > > > > Dorothy > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > >] > > > > On > > > > Behalf Of Janet Colello > > Sent: Saturday, January 15, 2011 11:16 AM > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > Subject: Re: Re: Hi All > > > > Thank you Leona, > > I have read and tried to prepare myself for this time, but I am feeling > >helpless > > > > > > > > and there is nothing I can do, but be there for Jim. It's very hard to watch > >him > > > > > > > > shut down. He has lost so much weight, I don't think there is enough strength > >in > > > > > > > > him to fight this anymore. He has been such a fighter and overcame so many > > obstacles that could have brought him down. It's hard to see him this way. I > > was with him until midnight last evening/this morning. > > It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as > > > of last night that covers both, but he would not swallow the medication. Leona, > > > > only a week ago he was eating his entire meals. I don't know if it is false > > hope, but I am wishing that it is just that he feels so lousy he won't swallow, > > > > but if he gets some antibiotic, he will start to feel better and swallow again, > > > > but maybe I am just having false hope and this is it. I just can't get a grip > >on > > > > > > > > this. No matter how much I have prepared for this moment, it is like I am > >having > > > > > > > > a bad dream. Jim told me he was dying last night in a whispery voice. I feel > > numb just thinking about the loss. A lab tech was in and did a blood test on > >Jim > > > > > > > > yesterday to see if there is an infection in the blood. Jim is my hero, he is > >so > > > > > > > > brave. This dreaded disease tears me apart. > > I need to hear from people like you that have gone through this and survived. I > > > > just can't imagine my life without Jim, but I know I will get through this and > > > move on, I just don't know how yet. > > Thank you so much, I appreciate hearing from you. > > Love and Hugs, > > Jan > > > > Leona, this is so true: > > ''Love is not finding someone to live with; it's finding someone you don't want > > > > to live without. " > > > > ________________________________ > > From: Leona Chereshnoski <lchere@ <mailto:lchere%40hughes.net> > > <mailto:lchere%40hughes.net> > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > <mailto:LBDcaregivers%40yahoogroups.com> > > > > Sent: Sat, January 15, 2011 10:27:52 AM > > Subject: Re: Hi All > > > > Jan: I have been where you are and feel that I know what you are going > > through. My oldest daughter told me the other day that she thought Dad knew > > that he was ready to go and just quit eating. I felt it was just the course > > of the LBD and it was his time to go. Either way, I am sure Ray wouldn't > > have wanted to continue any longer in the shape he was in. Comfort yourself > > with the knowledge that you have done every thing you could to care for him, > > show your love for him in every way you could and advocated for him > > everytime the opportunity arose. We lived our vows to the end. We also > > realize that he will be in a better place and when we meet them again, they > > will no longer be sick! As you have had the strength to suffer along with > > him every step of the way, you will find the strength to find your way > > through the end time. It has been two years this spring and the tears came > > back as I read your post because the things you are seeing, are the things I > > saw as he faded away. Now, I think often of the things he said and did. I > > smile often as I tell a story or remember a good time we had. You may find > > as I did, that I did a lot of my grieving long before he died. Once I > > realized there were no miracle drugs, or treatments or cures --that he was > > on steep slope fading away, I cried and grieved him 6 months before he died. > > I did not know that is what was going on, but afterward, I realized and > > really handled everything very well. Jan, please know that you and Jim are > > in my prayers and thoughts as you continue down this difficult road. God > > Bless you both!! Love, 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. > > > > ''Love is not finding someone to live with; it's finding someone you don't want > > > > to live without " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 We do have this here. It is used if the person has not requested 'no feeding tubes.' That's why people here have Advanced Directives. All of us need to decide how much intervention we want just to maintain the physical body when the natural process of death is occurring. For myself, I have an advanced directive that says no feeding tubes. I watched my friend's wife die with a feeding tube. It was placed and she had another two years of life but the years were in a nursing home and there was little pleasure in her life. She laid there and was kept alive. She never ate again and she never really had any quality of life. At the end, she was aspirating her own saliva so they had patches behind her ears to dry out her mouth so there was no saliva. Eventually she died. I watched her wither away and I knew I would not want that. Has your mother had a chance to tell you what her wishes are? > > Hi All, > My mom has also started having problems with swallowing lately. > And her doctor told me that we have to consider placing PEG > into her stomach in the very near future to protect her from having > aspiration pnemonia. I am wondering why it is not used in USA. > I wish you all strength in this journey. > Ferhan > > > > ________________________________ > > To: LBDcaregivers > Sent: Tue, January 18, 2011 11:59:13 PM > Subject: Re: Re: Hi All - Jan > > Â > Hi, Jan, > > My heart aches for you. When my dad reached the stage where he no longer > could swallow, gave me the tip about using something cold to help > Dad swallow his medicine. Seroquel was the only medicine that was helpful to > Dad by that time and 's tip worked like a charm for him. I would > get Dad those Frostys from 's, and stick the pill in a tiny bite which > he would take. The consistency is somewhere between a milk shake and ice > cream which he seemed to have an easier time with. > > My thoughts and prayers are with you and Jim. I know how difficult this > time is for you. You have been an amazing advocate and caregiver for Jim, > and you will always draw peace from that. > > Sending you big hugs with all my love, > > Piper > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 Jan, I've thought the same thing, even considering taking him home with hospice. In Mom's nh anyone dying in a shared room was moved to a private room, even if they had to take over a small room where families visited. The dignity of dying was enhanced, as was privacy of family dealing with the end of life. Thinking of you. Love > > > > Thank you Dorothy, but Jim is in the final stages where he can not swallow. He > > > has been on pureed for about a year and on thickened liquids. I was giving Jim > > > liquids with a syringe that I bought in the baby aisle at the pharmacy used to > > > give babies liquid medication to get liquids in him and he was swallowing it, > > > > but I was told by the staff at the nursing home, I could not use the syringe > >and > > > > they suggested to get a sippy cup. I laughed at that, because I told them Jim > > can not even suck on a straw, how is he going to use a sippy cup? You can't tip > > > > it to drink, it is made purposely not to spill when tipped. > > > > Jim has stopped eating all together, he does drink a little from a cup or I > > still sneak the syringe in and give him sips from that. I can control a little > > > drip at a time into his mouth with the syringe. Jim is not swallowing his > > antibiotic for Pneumonia and it is worse. > > Jim is all bones now and very weak. > > I appreciate all you suggestions, but they will not work for Jim since he can > >no > > > > longer swallow at all and will hold the food in his mouth or spit it out, but > > now he is too weak to even open his mouth for food, but he will sip from a cup > >a > > > > little. > > The staff at the facility would feed the people that need to be fed, I believe > > > they may have aspirated Jim, because they are on a schedule to get the people > > fed and out and sometimes give them too much at a time. I have seen it. I > >always > > > > made sure to be with Jim for dinner and help him, but I could not be there for > > > breakfast and lunch. > > I appreciate your concern and your help. > > Jan > > > > > > > > > > ________________________________ > > From: dsinouye <fullcircle@> > > To: LBDcaregivers > > Sent: Sun, January 16, 2011 5:14:32 PM > > Subject: RE: Re: Hi All > > > >  > > Jan I know you are doing all you can. Is someone feeding him and doing all the > > > work of getting the food/drink to his mouth so he can put his energy to > > eating/swallowing? I’m curious, did they ask you to get a sippy cup so it > > doesn’t spill if tipped over or because they thought he would be able to > >better > > > > suck the fluid out safely? If it’s the former reason it sounds like they are > > > leaving him on his own to eat/drink and that, as was explained to us, is the > > foremost reason people with these swallowing difficulties lose so much weight > > and aspirate. It takes a lot of energy to concentrate and get the food managed > > > in the mouth and a good swallow and then even a second or third swallow to > >clear > > > > around the airway so there isn’t residual around the edge of the windpipe > >that > > > > can fall in. I imagine he is very weak even more so with the infections. Can he > > > > manage a swallow if thickened liquid is spooned in? > > > > > > I’ll share what we are doing just in case it provides something of use to > >you. > > > > We are doing is pureeing food or cooking soft (soft mechanical diet) and > >someone > > > > has to take a spoon of food the right size, feed her, encourage to chew as > > needed, keeping a hand lightly on the back of the neck to 1) prevent the head > > from going back and 2) encourage chin downward for the swallow, then getting > >her > > > > to say something (asking a question what’s the dog doing, what does the food > > > taste like, etc.) to be sure the airway does not have the gurgly or raspy sound > > > > (other than normal). And then going to the next bite or drink. About 50% of the > > > > time we have to get another swallow to clear the airway because the flap that > > seals over the windpipe during a swallow does not seal off entirely and leaves > >a > > > > residual around the edge of the airpipe. We have been using a straw for liquids > > > > but she is not doing well with it †" the liquids go back into the cup, so now > > > back to thickened liquids out of a cup with a thin rim (easier on the mouth) > >but > > > > she cannot manage it so we are holding it and she is free to concentrate on the > > > > swallow part. > > > > > > Current speech pathologist told me that people will often stop eating/drinking > > > if they are having too much trouble with aspiration/choking especially if they > > > are left on their own to eat/drink. I’m not at all sure what level of care a > > > facility would provide with eating/drinking and perhaps this amount of > > assistance is more than they provide. > > > > > > If he cannot swallow at all a sippy cup will not help things. I would ask for > > the sp to re evaluate things asap and figure out what’s going on. > > > > I’m sorry, I know you are going through hell right now and wish there was > > something more I could offer. > > > > Dorothy > > > > From: LBDcaregivers [mailto:LBDcaregivers ] On > > Behalf Of Janet Colello > > Sent: Sunday, January 16, 2011 3:41 AM > > To: LBDcaregivers > > Subject: Re: Re: Hi All > > > > Hi Dorothy, > > The speech pathologist already evaluated Jim last summer and put him on pureed > > > foods, before that he was on mechanical soft foods. He was already on thickened > > > > liquids. They had a meeting with me last week and said to get him a sippy cup, > > > so he won't aspirate, but he had a hard time with a sippy cup, because it is > > also made not to spill when it tips over so if it is tipped up to drink, he > > can't get anything out of it unless he sucks on the tip, but he doesn't suck. I > > > > went back to the old way using an actual cup, but now he is not drinking or > > eating. He either holds it in his mouth or spits it out. I can't get it into > > him. > > Jan > > > > ________________________________ > > From: dsinouye <fullcircle@ <mailto:fullcircle%40sonic.net>; > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>; > > Sent: Sat, January 15, 2011 2:24:20 PM > > Subject: RE: Re: Hi All > > > > Jan, > > > > Can you get them to bring in a speech pathologist asap to help figure out how > > Jim can swallow (and eat and drink) more safely? Or has this already been done? > > > > > > Dorothy > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>; > > [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>; > >] > > > > On > > > > Behalf Of Janet Colello > > Sent: Saturday, January 15, 2011 11:16 AM > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>; > > Subject: Re: Re: Hi All > > > > Thank you Leona, > > I have read and tried to prepare myself for this time, but I am feeling > >helpless > > > > > > > > and there is nothing I can do, but be there for Jim. It's very hard to watch > >him > > > > > > > > shut down. He has lost so much weight, I don't think there is enough strength > >in > > > > > > > > him to fight this anymore. He has been such a fighter and overcame so many > > obstacles that could have brought him down. It's hard to see him this way. I > > was with him until midnight last evening/this morning. > > It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as > > > of last night that covers both, but he would not swallow the medication. Leona, > > > > only a week ago he was eating his entire meals. I don't know if it is false > > hope, but I am wishing that it is just that he feels so lousy he won't swallow, > > > > but if he gets some antibiotic, he will start to feel better and swallow again, > > > > but maybe I am just having false hope and this is it. I just can't get a grip > >on > > > > > > > > this. No matter how much I have prepared for this moment, it is like I am > >having > > > > > > > > a bad dream. Jim told me he was dying last night in a whispery voice. I feel > > numb just thinking about the loss. A lab tech was in and did a blood test on > >Jim > > > > > > > > yesterday to see if there is an infection in the blood. Jim is my hero, he is > >so > > > > > > > > brave. This dreaded disease tears me apart. > > I need to hear from people like you that have gone through this and survived. I > > > > just can't imagine my life without Jim, but I know I will get through this and > > > move on, I just don't know how yet. > > Thank you so much, I appreciate hearing from you. > > Love and Hugs, > > Jan > > > > Leona, this is so true: > > ''Love is not finding someone to live with; it's finding someone you don't want > > > > to live without. " > > > > ________________________________ > > From: Leona Chereshnoski <lchere@ <mailto:lchere%40hughes.net>; > > <mailto:lchere%40hughes.net>; > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>; > > <mailto:LBDcaregivers%40yahoogroups.com>; > > > > Sent: Sat, January 15, 2011 10:27:52 AM > > Subject: Re: Hi All > > > > Jan: I have been where you are and feel that I know what you are going > > through. My oldest daughter told me the other day that she thought Dad knew > > that he was ready to go and just quit eating. I felt it was just the course > > of the LBD and it was his time to go. Either way, I am sure Ray wouldn't > > have wanted to continue any longer in the shape he was in. Comfort yourself > > with the knowledge that you have done every thing you could to care for him, > > show your love for him in every way you could and advocated for him > > everytime the opportunity arose. We lived our vows to the end. We also > > realize that he will be in a better place and when we meet them again, they > > will no longer be sick! As you have had the strength to suffer along with > > him every step of the way, you will find the strength to find your way > > through the end time. It has been two years this spring and the tears came > > back as I read your post because the things you are seeing, are the things I > > saw as he faded away. Now, I think often of the things he said and did. I > > smile often as I tell a story or remember a good time we had. You may find > > as I did, that I did a lot of my grieving long before he died. Once I > > realized there were no miracle drugs, or treatments or cures --that he was > > on steep slope fading away, I cried and grieved him 6 months before he died. > > I did not know that is what was going on, but afterward, I realized and > > really handled everything very well. Jan, please know that you and Jim are > > in my prayers and thoughts as you continue down this difficult road. God > > Bless you both!! Love, 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. > > > > ''Love is not finding someone to live with; it's finding someone you don't want > > > > to live without " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 Dear Jan, You are one of my heroes, to be sure.... your creativity in finding ways to take care of Jim, your kindness, your thoughtfulness, your devotion, and your love. I have learned so much from you, and have been able to use so many of your helpful hints with my Mom. You and Jim have touched so many lives, and for that I am so grateful. I wish I could help you through this time, but I can only send you strength and love via the internet from New York. With love, Helene > > > > > > Thank you Dorothy, but Jim is in the final stages where he can not swallow. > >He > > > > > > > has been on pureed for about a year and on thickened liquids. I was giving > >Jim > > > > > > > liquids with a syringe that I bought in the baby aisle at the pharmacy used > >to > > > > > > > give babies liquid medication to get liquids in him and he was > >swallowing it, > > > > > > > > but I was told by the staff at the nursing home, I could not use the syringe > > > >and > > > > > > they suggested to get a sippy cup. I laughed at that, because I told them Jim > > > > > can not even suck on a straw, how is he going to use a sippy cup? You can't > >tip > > > > > > > > it to drink, it is made purposely not to spill when tipped. > > > > > > Jim has stopped eating all together, he does drink a little from a cup or I > > > still sneak the syringe in and give him sips from that. I can control a > >little > > > > > > > drip at a time into his mouth with the syringe. Jim is not swallowing his > > > antibiotic for Pneumonia and it is worse. > > > Jim is all bones now and very weak. > > > I appreciate all you suggestions, but they will not work for Jim since he can > > > > >no > > > > > > longer swallow at all and will hold the food in his mouth or spit it out, but > > > > > now he is too weak to even open his mouth for food, but he will sip from a > >cup > > > > >a > > > > > > little. > > > The staff at the facility would feed the people that need to be fed, I > >believe > > > > > > > they may have aspirated Jim, because they are on a schedule to get the people > > > > > fed and out and sometimes give them too much at a time. I have seen it. I > > >always > > > > > > made sure to be with Jim for dinner and help him, but I could not be there > >for > > > > > > > breakfast and lunch. > > > I appreciate your concern and your help. > > > Jan > > > > > > > > > > > > > > > ________________________________ > > > From: dsinouye <fullcircle@> > > > To: LBDcaregivers > > > Sent: Sun, January 16, 2011 5:14:32 PM > > > Subject: RE: Re: Hi All > > > > > >  > > > Jan I know you are doing all you can. Is someone feeding him and doing all > >the > > > > > > > work of getting the food/drink to his mouth so he can put his energy to > > > eating/swallowing? I’m curious, did they ask you to get a sippy cup so > >it > > > > > doesn’t spill if tipped over or because they thought he would be able > >to > > > > >better > > > > > > suck the fluid out safely? If it’s the former reason it sounds like > >they are > > > > > > > leaving him on his own to eat/drink and that, as was explained to us, is the > > > > foremost reason people with these swallowing difficulties lose so much weight > > > > > and aspirate. It takes a lot of energy to concentrate and get the food > >managed > > > > > > > in the mouth and a good swallow and then even a second or third swallow to > > >clear > > > > > > around the airway so there isn’t residual around the edge of the > >windpipe > > > > >that > > > > > > can fall in. I imagine he is very weak even more so with the infections. Can > >he > > > > > > > > manage a swallow if thickened liquid is spooned in? > > > > > > > > > I’ll share what we are doing just in case it provides something of use > >to > > > > >you. > > > > > > We are doing is pureeing food or cooking soft (soft mechanical diet) and > > >someone > > > > > > has to take a spoon of food the right size, feed her, encourage to chew as > > > needed, keeping a hand lightly on the back of the neck to 1) prevent the head > > > > > from going back and 2) encourage chin downward for the swallow, then getting > > > >her > > > > > > to say something (asking a question what’s the dog doing, what does > >the food > > > > > > > taste like, etc.) to be sure the airway does not have the gurgly or raspy > >sound > > > > > > > > (other than normal). And then going to the next bite or drink. About 50% of > >the > > > > > > > > time we have to get another swallow to clear the airway because the flap that > > > > > seals over the windpipe during a swallow does not seal off entirely and > >leaves > > > > >a > > > > > > residual around the edge of the airpipe. We have been using a straw for > >liquids > > > > > > > > but she is not doing well with it †" the liquids go back into the cup, so > >now > > > > > > > back to thickened liquids out of a cup with a thin rim (easier on the mouth) > > > >but > > > > > > she cannot manage it so we are holding it and she is free to concentrate on > >the > > > > > > > > swallow part. > > > > > > > > > Current speech pathologist told me that people will often stop > >eating/drinking > > > > > > > if they are having too much trouble with aspiration/choking especially if > >they > > > > > > > are left on their own to eat/drink. I’m not at all sure what level of > >care a > > > > > > > facility would provide with eating/drinking and perhaps this amount of > > > assistance is more than they provide. > > > > > > > > > If he cannot swallow at all a sippy cup will not help things. I would ask for > > > > > the sp to re evaluate things asap and figure out what’s going on. > > > > > > I’m sorry, I know you are going through hell right now and wish there > >was > > > > > something more I could offer. > > > > > > Dorothy > > > > > > From: LBDcaregivers [mailto:LBDcaregivers ] On > > > > > Behalf Of Janet Colello > > > Sent: Sunday, January 16, 2011 3:41 AM > > > To: LBDcaregivers > > > Subject: Re: Re: Hi All > > > > > > Hi Dorothy, > > > The speech pathologist already evaluated Jim last summer and put him on > >pureed > > > > > > > foods, before that he was on mechanical soft foods. He was already on > >thickened > > > > > > > > liquids. They had a meeting with me last week and said to get him a sippy > >cup, > > > > > > > so he won't aspirate, but he had a hard time with a sippy cup, because it is > > > > also made not to spill when it tips over so if it is tipped up to drink, he > > > can't get anything out of it unless he sucks on the tip, but he doesn't suck. > >I > > > > > > > > went back to the old way using an actual cup, but now he is not drinking or > > > eating. He either holds it in his mouth or spits it out. I can't get it into > > > > him. > > > Jan > > > > > > ________________________________ > > > From: dsinouye <fullcircle@ <mailto:fullcircle%40sonic.net> > > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > Sent: Sat, January 15, 2011 2:24:20 PM > > > Subject: RE: Re: Hi All > > > > > > Jan, > > > > > > Can you get them to bring in a speech pathologist asap to help figure out how > > > > > Jim can swallow (and eat and drink) more safely? Or has this already been > >done? > > > > > > > > > > > Dorothy > > > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > > [mailto:LBDcaregivers > ><mailto:LBDcaregivers%40yahoogroups.com> > > > > >] > > > > > > On > > > > > > Behalf Of Janet Colello > > > Sent: Saturday, January 15, 2011 11:16 AM > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > Subject: Re: Re: Hi All > > > > > > Thank you Leona, > > > I have read and tried to prepare myself for this time, but I am feeling > > >helpless > > > > > > > > > > > > and there is nothing I can do, but be there for Jim. It's very hard to watch > > > >him > > > > > > > > > > > > shut down. He has lost so much weight, I don't think there is enough strength > > > > >in > > > > > > > > > > > > him to fight this anymore. He has been such a fighter and overcame so many > > > obstacles that could have brought him down. It's hard to see him this way. I > > > > was with him until midnight last evening/this morning. > > > It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic > >as > > > > > > > of last night that covers both, but he would not swallow the medication. > >Leona, > > > > > > > > only a week ago he was eating his entire meals. I don't know if it is false > > > hope, but I am wishing that it is just that he feels so lousy he won't > >swallow, > > > > > > > > but if he gets some antibiotic, he will start to feel better and swallow > >again, > > > > > > > > but maybe I am just having false hope and this is it. I just can't get a grip > > > > >on > > > > > > > > > > > > this. No matter how much I have prepared for this moment, it is like I am > > >having > > > > > > > > > > > > a bad dream. Jim told me he was dying last night in a whispery voice. I feel > > > > numb just thinking about the loss. A lab tech was in and did a blood test on > > > >Jim > > > > > > > > > > > > yesterday to see if there is an infection in the blood. Jim is my hero, he is > > > > >so > > > > > > > > > > > > brave. This dreaded disease tears me apart. > > > I need to hear from people like you that have gone through this and survived. > >I > > > > > > > > just can't imagine my life without Jim, but I know I will get through this > >and > > > > > > > move on, I just don't know how yet. > > > Thank you so much, I appreciate hearing from you. > > > Love and Hugs, > > > Jan > > > > > > Leona, this is so true: > > > ''Love is not finding someone to live with; it's finding someone you don't > >want > > > > > > > > to live without. " > > > > > > ________________________________ > > > From: Leona Chereshnoski <lchere@ <mailto:lchere%40hughes.net> > > > <mailto:lchere%40hughes.net> > > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > <mailto:LBDcaregivers%40yahoogroups.com> > > > > > > Sent: Sat, January 15, 2011 10:27:52 AM > > > Subject: Re: Hi All > > > > > > Jan: I have been where you are and feel that I know what you are going > > > through. My oldest daughter told me the other day that she thought Dad knew > > > that he was ready to go and just quit eating. I felt it was just the course > > > of the LBD and it was his time to go. Either way, I am sure Ray wouldn't > > > have wanted to continue any longer in the shape he was in. Comfort yourself > > > with the knowledge that you have done every thing you could to care for him, > > > show your love for him in every way you could and advocated for him > > > everytime the opportunity arose. We lived our vows to the end. We also > > > realize that he will be in a better place and when we meet them again, they > > > will no longer be sick! As you have had the strength to suffer along with > > > him every step of the way, you will find the strength to find your way > > > through the end time. It has been two years this spring and the tears came > > > back as I read your post because the things you are seeing, are the things I > > > saw as he faded away. Now, I think often of the things he said and did. I > > > smile often as I tell a story or remember a good time we had. You may find > > > as I did, that I did a lot of my grieving long before he died. Once I > > > realized there were no miracle drugs, or treatments or cures --that he was > > > on steep slope fading away, I cried and grieved him 6 months before he died. > > > I did not know that is what was going on, but afterward, I realized and > > > really handled everything very well. Jan, please know that you and Jim are > > > in my prayers and thoughts as you continue down this difficult road. God > > > Bless you both!! Love, 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. > > > > > > ''Love is not finding someone to live with; it's finding someone you don't > >want > > > > > > > > to live without " > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 Ferhan, It is a misconception to think that a person with a feeding tube will not get aspiration pneumonia. It happens all the time. What people fail to realize is, that your body starts to shut down. A feeding tube by passes one problem, only to create other problems. A person with a feeding tube, must never have their head flat for several hours after the feeding, as it may " urp " up and still cause aspiration. Feeding causes the mouth to secret saliva. So that a person can still choke on their own saliva and have tube feeding cough up and go into their lungs as well. I am going to be open and honest here. As nurse, I believe that a person needs to consider quality of life, very quantity of life. While a feeding tube may extend life and keep a person alive for a few more months. YOu will not beat death. You may cause more pain and suffering to a person. That is something that a doctor will not address in many instances. I think that yo must consider all angles when considering a feeding tube and it is important to ask the hard questions so that you can make and informed and educated decision about these choices. There is no right or wrong answer, just what is right for you and your loved one. I feel that if a person wants to fight death and take every measure possible to them and take the consequences of that decision, then they have that right. But, I do think that they need to know what those consequences are. And that is where the medical delivery system falls short. Medical professionals do not explain what it means to take such measures. Diane Carbo http://www.aginghomehealthcare.com http://www.dementiacaresecrets.com -- In LBDcaregivers , " nandelfisch " wrote: > > We do have this here. It is used if the person has not requested 'no feeding tubes.' That's why people here have Advanced Directives. All of us need to decide how much intervention we want just to maintain the physical body when the natural process of death is occurring. For myself, I have an advanced directive that says no feeding tubes. I watched my friend's wife die with a feeding tube. It was placed and she had another two years of life but the years were in a nursing home and there was little pleasure in her life. She laid there and was kept alive. She never ate again and she never really had any quality of life. At the end, she was aspirating her own saliva so they had patches behind her ears to dry out her mouth so there was no saliva. Eventually she died. I watched her wither away and I knew I would not want that. Has your mother had a chance to tell you what her wishes are? > > > > > > Hi All, > > My mom has also started having problems with swallowing lately. > > And her doctor told me that we have to consider placing PEG > > into her stomach in the very near future to protect her from having > > aspiration pnemonia. I am wondering why it is not used in USA. > > I wish you all strength in this journey. > > Ferhan > > > > > > > > ________________________________ > > From: " ppark4915@ " <ppark4915@> > > To: LBDcaregivers > > Sent: Tue, January 18, 2011 11:59:13 PM > > Subject: Re: Re: Hi All - Jan > > > > Â > > Hi, Jan, > > > > My heart aches for you. When my dad reached the stage where he no longer > > could swallow, gave me the tip about using something cold to help > > Dad swallow his medicine. Seroquel was the only medicine that was helpful to > > Dad by that time and 's tip worked like a charm for him. I would > > get Dad those Frostys from 's, and stick the pill in a tiny bite which > > he would take. The consistency is somewhere between a milk shake and ice > > cream which he seemed to have an easier time with. > > > > My thoughts and prayers are with you and Jim. I know how difficult this > > time is for you. You have been an amazing advocate and caregiver for Jim, > > and you will always draw peace from that. > > > > Sending you big hugs with all my love, > > > > Piper > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 And you are his hero Jan. > > > > > > Thank you Dorothy, but Jim is in the final stages where he can not swallow. > >He > > > > > > > has been on pureed for about a year and on thickened liquids. I was giving > >Jim > > > > > > > liquids with a syringe that I bought in the baby aisle at the pharmacy used > >to > > > > > > > give babies liquid medication to get liquids in him and he was > >swallowing it, > > > > > > > > but I was told by the staff at the nursing home, I could not use the syringe > > > >and > > > > > > they suggested to get a sippy cup. I laughed at that, because I told them Jim > > > > > can not even suck on a straw, how is he going to use a sippy cup? You can't > >tip > > > > > > > > it to drink, it is made purposely not to spill when tipped. > > > > > > Jim has stopped eating all together, he does drink a little from a cup or I > > > still sneak the syringe in and give him sips from that. I can control a > >little > > > > > > > drip at a time into his mouth with the syringe. Jim is not swallowing his > > > antibiotic for Pneumonia and it is worse. > > > Jim is all bones now and very weak. > > > I appreciate all you suggestions, but they will not work for Jim since he can > > > > >no > > > > > > longer swallow at all and will hold the food in his mouth or spit it out, but > > > > > now he is too weak to even open his mouth for food, but he will sip from a > >cup > > > > >a > > > > > > little. > > > The staff at the facility would feed the people that need to be fed, I > >believe > > > > > > > they may have aspirated Jim, because they are on a schedule to get the people > > > > > fed and out and sometimes give them too much at a time. I have seen it. I > > >always > > > > > > made sure to be with Jim for dinner and help him, but I could not be there > >for > > > > > > > breakfast and lunch. > > > I appreciate your concern and your help. > > > Jan > > > > > > > > > > > > > > > ________________________________ > > > From: dsinouye <fullcircle@> > > > To: LBDcaregivers > > > Sent: Sun, January 16, 2011 5:14:32 PM > > > Subject: RE: Re: Hi All > > > > > >  > > > Jan I know you are doing all you can. Is someone feeding him and doing all > >the > > > > > > > work of getting the food/drink to his mouth so he can put his energy to > > > eating/swallowing? I’m curious, did they ask you to get a sippy cup so > >it > > > > > doesn’t spill if tipped over or because they thought he would be able > >to > > > > >better > > > > > > suck the fluid out safely? If it’s the former reason it sounds like > >they are > > > > > > > leaving him on his own to eat/drink and that, as was explained to us, is the > > > > foremost reason people with these swallowing difficulties lose so much weight > > > > > and aspirate. It takes a lot of energy to concentrate and get the food > >managed > > > > > > > in the mouth and a good swallow and then even a second or third swallow to > > >clear > > > > > > around the airway so there isn’t residual around the edge of the > >windpipe > > > > >that > > > > > > can fall in. I imagine he is very weak even more so with the infections. Can > >he > > > > > > > > manage a swallow if thickened liquid is spooned in? > > > > > > > > > I’ll share what we are doing just in case it provides something of use > >to > > > > >you. > > > > > > We are doing is pureeing food or cooking soft (soft mechanical diet) and > > >someone > > > > > > has to take a spoon of food the right size, feed her, encourage to chew as > > > needed, keeping a hand lightly on the back of the neck to 1) prevent the head > > > > > from going back and 2) encourage chin downward for the swallow, then getting > > > >her > > > > > > to say something (asking a question what’s the dog doing, what does > >the food > > > > > > > taste like, etc.) to be sure the airway does not have the gurgly or raspy > >sound > > > > > > > > (other than normal). And then going to the next bite or drink. About 50% of > >the > > > > > > > > time we have to get another swallow to clear the airway because the flap that > > > > > seals over the windpipe during a swallow does not seal off entirely and > >leaves > > > > >a > > > > > > residual around the edge of the airpipe. We have been using a straw for > >liquids > > > > > > > > but she is not doing well with it †" the liquids go back into the cup, so > >now > > > > > > > back to thickened liquids out of a cup with a thin rim (easier on the mouth) > > > >but > > > > > > she cannot manage it so we are holding it and she is free to concentrate on > >the > > > > > > > > swallow part. > > > > > > > > > Current speech pathologist told me that people will often stop > >eating/drinking > > > > > > > if they are having too much trouble with aspiration/choking especially if > >they > > > > > > > are left on their own to eat/drink. I’m not at all sure what level of > >care a > > > > > > > facility would provide with eating/drinking and perhaps this amount of > > > assistance is more than they provide. > > > > > > > > > If he cannot swallow at all a sippy cup will not help things. I would ask for > > > > > the sp to re evaluate things asap and figure out what’s going on. > > > > > > I’m sorry, I know you are going through hell right now and wish there > >was > > > > > something more I could offer. > > > > > > Dorothy > > > > > > From: LBDcaregivers [mailto:LBDcaregivers ] On > > > > > Behalf Of Janet Colello > > > Sent: Sunday, January 16, 2011 3:41 AM > > > To: LBDcaregivers > > > Subject: Re: Re: Hi All > > > > > > Hi Dorothy, > > > The speech pathologist already evaluated Jim last summer and put him on > >pureed > > > > > > > foods, before that he was on mechanical soft foods. He was already on > >thickened > > > > > > > > liquids. They had a meeting with me last week and said to get him a sippy > >cup, > > > > > > > so he won't aspirate, but he had a hard time with a sippy cup, because it is > > > > also made not to spill when it tips over so if it is tipped up to drink, he > > > can't get anything out of it unless he sucks on the tip, but he doesn't suck. > >I > > > > > > > > went back to the old way using an actual cup, but now he is not drinking or > > > eating. He either holds it in his mouth or spits it out. I can't get it into > > > > him. > > > Jan > > > > > > ________________________________ > > > From: dsinouye <fullcircle@ <mailto:fullcircle%40sonic.net> > > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > Sent: Sat, January 15, 2011 2:24:20 PM > > > Subject: RE: Re: Hi All > > > > > > Jan, > > > > > > Can you get them to bring in a speech pathologist asap to help figure out how > > > > > Jim can swallow (and eat and drink) more safely? Or has this already been > >done? > > > > > > > > > > > Dorothy > > > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > > [mailto:LBDcaregivers > ><mailto:LBDcaregivers%40yahoogroups.com> > > > > >] > > > > > > On > > > > > > Behalf Of Janet Colello > > > Sent: Saturday, January 15, 2011 11:16 AM > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > Subject: Re: Re: Hi All > > > > > > Thank you Leona, > > > I have read and tried to prepare myself for this time, but I am feeling > > >helpless > > > > > > > > > > > > and there is nothing I can do, but be there for Jim. It's very hard to watch > > > >him > > > > > > > > > > > > shut down. He has lost so much weight, I don't think there is enough strength > > > > >in > > > > > > > > > > > > him to fight this anymore. He has been such a fighter and overcame so many > > > obstacles that could have brought him down. It's hard to see him this way. I > > > > was with him until midnight last evening/this morning. > > > It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic > >as > > > > > > > of last night that covers both, but he would not swallow the medication. > >Leona, > > > > > > > > only a week ago he was eating his entire meals. I don't know if it is false > > > hope, but I am wishing that it is just that he feels so lousy he won't > >swallow, > > > > > > > > but if he gets some antibiotic, he will start to feel better and swallow > >again, > > > > > > > > but maybe I am just having false hope and this is it. I just can't get a grip > > > > >on > > > > > > > > > > > > this. No matter how much I have prepared for this moment, it is like I am > > >having > > > > > > > > > > > > a bad dream. Jim told me he was dying last night in a whispery voice. I feel > > > > numb just thinking about the loss. A lab tech was in and did a blood test on > > > >Jim > > > > > > > > > > > > yesterday to see if there is an infection in the blood. Jim is my hero, he is > > > > >so > > > > > > > > > > > > brave. This dreaded disease tears me apart. > > > I need to hear from people like you that have gone through this and survived. > >I > > > > > > > > just can't imagine my life without Jim, but I know I will get through this > >and > > > > > > > move on, I just don't know how yet. > > > Thank you so much, I appreciate hearing from you. > > > Love and Hugs, > > > Jan > > > > > > Leona, this is so true: > > > ''Love is not finding someone to live with; it's finding someone you don't > >want > > > > > > > > to live without. " > > > > > > ________________________________ > > > From: Leona Chereshnoski <lchere@ <mailto:lchere%40hughes.net> > > > <mailto:lchere%40hughes.net> > > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > <mailto:LBDcaregivers%40yahoogroups.com> > > > > > > Sent: Sat, January 15, 2011 10:27:52 AM > > > Subject: Re: Hi All > > > > > > Jan: I have been where you are and feel that I know what you are going > > > through. My oldest daughter told me the other day that she thought Dad knew > > > that he was ready to go and just quit eating. I felt it was just the course > > > of the LBD and it was his time to go. Either way, I am sure Ray wouldn't > > > have wanted to continue any longer in the shape he was in. Comfort yourself > > > with the knowledge that you have done every thing you could to care for him, > > > show your love for him in every way you could and advocated for him > > > everytime the opportunity arose. We lived our vows to the end. We also > > > realize that he will be in a better place and when we meet them again, they > > > will no longer be sick! As you have had the strength to suffer along with > > > him every step of the way, you will find the strength to find your way > > > through the end time. It has been two years this spring and the tears came > > > back as I read your post because the things you are seeing, are the things I > > > saw as he faded away. Now, I think often of the things he said and did. I > > > smile often as I tell a story or remember a good time we had. You may find > > > as I did, that I did a lot of my grieving long before he died. Once I > > > realized there were no miracle drugs, or treatments or cures --that he was > > > on steep slope fading away, I cried and grieved him 6 months before he died. > > > I did not know that is what was going on, but afterward, I realized and > > > really handled everything very well. Jan, please know that you and Jim are > > > in my prayers and thoughts as you continue down this difficult road. God > > > Bless you both!! Love, 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. > > > > > > ''Love is not finding someone to live with; it's finding someone you don't > >want > > > > > > > > to live without " > > > > > > Quote Link to comment Share on other sites More sharing options...
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