Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 Jan, Your post really hit home for me. My dad was unable to feed himself because his PD tremors were so bad. He developed aspiration pneumonia which then lead to sepsis and finally death. I remember walking into the dining room and one of the aids was feeding my dad so quickly – I don’t think he was able to chew more than once or twice per spoonful. I still often wonder if this is what brought on the pneumonia. And then, of course, there was – remember him? I don’t think we ever got any satisfaction from brining our concerns to the higher ups but don’t let that stop you from making some noise yourself. Sending you and Jim much strength. Courage From: Janet Colello Sent: Tuesday, January 18, 2011 6:18 AM To: LBDcaregivers Subject: Re: Re: Hi All Hi Joan, I think that telling me not to use the syringe was a planned thing. Sometimes I think nursing homes have a need to clean out to allow new in. (Just my opinion, not a fact.) It seems that groups go at or around the same time. It angered me, because their alternative to the syringe was a " Sippy Cup " I told them Jim couldn't suck with a straw before their idea of a " Sippy Cup " The person has to be able to suck on a sippy cup. Just a stupid suggestion of theirs, it would dehydrate Jim even more not to be able to get anything, if he were actually able to drink. They told me, but I think they lied, that the syringe would aspirate Jim. Huh? How so, when I can regulate how much he gets and wait for him to swallow. They first suggested a straw before the sippy cup, how can he aspirate from a syringe compared to a straw? Sometimes Jim even sucked from the tip of the syringe to get more. I saw CNAs pour liquid into Jim's mouth that he could not swallow as fast as they poured. That was not aspirating him?!!! Something smelled fishy to me about that whole thing. I learned the use of a syringe from an occupational therapist where I worked with special needs children and she used the syringe with kids that had failure to thrive. I didn't give up on the syringe, I would attempt to use it behind the curtain when the nurses weren't around. Jim will not even take from the syringe now. Everything I put in drools back out. It was really a saving grace with Jim to hydrate him or he probably would have been extremely dehydrated long ago. In the early years at the nursing home, he was dehydrated often and needed IVs to hydrate him, since the syringe he was fine for a few years. Jim has a roommate that is awful, disrespectful of older people and women in general. He has a foul mouth and I would love to take a bar of soap and wash it out! Anytime I try to talk to Jim, because I am saying it in low tones, so that awful guy can't hear, but he yells, " Stop Talking Baby Talk To Him! " Or " Shut Up Dumb Broad! " He shouts that to everyone in the halls constantly, especially old ladies. He is 45 and was in an accident. His accident was when he was 25 and he still thinks he is 25. He fell off a bridge and hit his head on a rock. He is blind and his head is gashed in on one side and he is paralized on the other. I don't know if it is the brain damage that causes him to talk that way, but he uses the F word and shouts in the halls even if an older woman is quietly talking to someone else, " Shut Up F---in' Broad! " It's awful, because I can not talk to Jim without him interrupting with his foul mouth. They always put him in bed early to get him out of the hall, so he is in the room with Jim very early in the evening, the entire time I am visiting. Jim mummbled something and he shouted, " Shout up old man! " You can't talk to him or he starts yelling even louder " F---in' Broad Get Out Of My Room! " He thinks it is just his room, he says he pays the bills for that room. You can't tell him that each roomate pays the bill. You can't talk to him about anything, because you will always be wrong and dumb. I have complained to the nurses to take him out while Jim is dying, I can't talk to Jim, but they say they can't it's his room too. I whispered a lot of stuff directly into Jim's ear tonight and I think he got it. Thank you Joan for your support. Hugs, Jan ________________________________ From: Joan <mailto:joan_croft%40hotmail.com> To: mailto:LBDcaregivers%40yahoogroups.com Sent: Mon, January 17, 2011 5:21:24 PM Subject: Re: Hi All Dear Jan, First I want to respond to the nurse telling you that you cannot feed Jim with a baby syringe! What is wrong with that...you could get liquid into his mouth in small quantities where you can't get anything into him through a glass...I really don't understand that at all...and he is YOUR husband and you are doing something to help him. I am so sorry about Jim's current condition. My mom's last days were very peaceful with hospice letting me know and when to give and up the medications that help with the agitation that comes with the body shutting down. As Sharon said in her post, just keep on talking to him and tell him how much joy he has brought into your life, and especially tell him that you will be OK...if you have plans of moving closer to your kids, or perhaps just telling him that they will be there for you if you need them. I think that most people hold on until they hear that their dearest loved ones will be alright, and to tell him that it is OK to go to the other side of the door...I told Mom that I was going to hold on until she got to the door and then she would be able to earn her reward of eternal life that she had lived for all of her life. Mom did go into a coma two days before she passed and my brother brought her back, but I don't think that she wanted to come back. On the afternoon that she passed away she had slipped into another coma. Not every person has the same experiences, but Jim will be safe in Jesus' arms and He will be wrapping His spirit around you as you go through the days that will follow. Hugs and prayers, Dear Jan, Joan > > 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 > > > > > ________________________________ > > To: mailto:LBDcaregivers%40yahoogroups.com > 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: mailto:LBDcaregivers%40yahoogroups.com [mailto:mailto:LBDcaregivers%40yahoogroups.com] On > Behalf Of Janet Colello > Sent: Sunday, January 16, 2011 3:41 AM > To: mailto:LBDcaregivers%40yahoogroups.com > 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: mailto:LBDcaregivers%40yahoogroups.com <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: mailto:LBDcaregivers%40yahoogroups.com <mailto:LBDcaregivers%40yahoogroups.com> > [mailto:mailto:LBDcaregivers%40yahoogroups.com <mailto:LBDcaregivers%40yahoogroups.com> >] > > On > > Behalf Of Janet Colello > Sent: Saturday, January 15, 2011 11:16 AM > To: mailto:LBDcaregivers%40yahoogroups.com <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: mailto:LBDcaregivers%40yahoogroups.com <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 I’m sorry Jan. Like many of us I try to find something to work around this disease and I can see it gets to be a way of life. I’m just sorry that you’re at this place. I hope you can get hospice in asap – it sounds like you both could use some extra tlc and comfort care – and maybe they can assist in getting the nasty person removed from Jim’s room. My best wishes are with you Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Janet Colello Sent: Monday, January 17, 2011 1:27 PM To: LBDcaregivers Subject: Re: Re: Hi All 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@... <mailto:fullcircle%40sonic.net> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> 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%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Janet Colello Sent: Sunday, January 16, 2011 3:41 AM To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> 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> <mailto:fullcircle%40sonic.net> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <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%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Janet Colello Sent: Saturday, January 15, 2011 11:16 AM To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <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> <mailto:lchere%40hughes.net> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <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 Jan, I was thinking the same thing! How could you remember 's birthday during this agonizing time? You are incredible. Yes, his birthday is next week, Wed, 63. I was thinking of all that you are going through and what is ahead with your birthday coming up. I hope you can celebrate somehow, if not on Fri, in the near future. I will pass your birthday wishes on. Take care Jan. Thinking of you constantly. This is the hardest part, when eating ceases. You will know you tried valiantly to get the antibiotic in and didn't give up. Have no regrets about that. 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 18, 2011 Report Share Posted January 18, 2011 Hi , I remember talking about the birthdays last year and that will be the same age as I will be, only I am dyslexic this year and will be 36! I just got a call from the nursing home and Jim is not responding or opening his mouth at all. I need to go in and see him, but it is so sad to see. I hate seeing this, but I need to be with him. It's so hard not being able to do anything for him, but sit back and let it all take it's course. I am hoping it doesn't all end on my birthday, it would be even more sad to have that hanging on my birthday. Thanks for keeping in touch. I don't know what I would do without you all here for me. Love and Hugs ________________________________ To: LBDcaregivers Sent: Tue, January 18, 2011 9:33:00 AM Subject: Re: Hi All  Jan, I was thinking the same thing! How could you remember 's birthday during this agonizing time? You are incredible. Yes, his birthday is next week, Wed, 63. I was thinking of all that you are going through and what is ahead with your birthday coming up. I hope you can celebrate somehow, if not on Fri, in the near future. I will pass your birthday wishes on. Take care Jan. Thinking of you constantly. This is the hardest part, when eating ceases. You will know you tried valiantly to get the antibiotic in and didn't give up. Have no regrets about that. 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 25, 2011 Report Share Posted January 25, 2011 Daerest Jan, so glad to hear from you. Not to worry about writing to us right now. We love you, and this is the time to soak it in. Love and hugs, (((((()))))) Imogene > > Hi, > I have not disappeared. I spent the weekend at my mom's house with my mom and > sister and now I am home to organize the " Celebration of Life Memorial " for Jim > and write the obituary. When things settle down a little I will respond to all > your wonderful heartfelt messages. I really appreciate the strength and warm > greetings I am getting from you. > Thank you all so much! > Love and Hugs, > Jan > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Ditto what Imogene said. From: The fishermans daughter Sent: Tuesday, January 25, 2011 2:41 PM To: LBDcaregivers Subject: Re: Hi All Daerest Jan, so glad to hear from you. Not to worry about writing to us right now. We love you, and this is the time to soak it in. Love and hugs, (((((()))))) Imogene > > Hi, > I have not disappeared. I spent the weekend at my mom's house with my mom and > sister and now I am home to organize the " Celebration of Life Memorial " for Jim > and write the obituary. When things settle down a little I will respond to all > your wonderful heartfelt messages. I really appreciate the strength and warm > greetings I am getting from you. > Thank you all so much! > Love and Hugs, > Jan > > > > > Quote Link to comment Share on other sites More sharing options...
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