Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Hello Dena and All, Well, my Uncle's bed sores look a bit better today but, unfortunately, he is already in another " comatose-Lewy " state. He slept in bed most of the day yesterday (very uncharacteristic of him) waking up once in the afternoon (3:45) because he wanted to go to the table. I put him in his wheelchair, fed him a late lunch of which he had a very hard time eating with his good hand, and then he wanted to get back in bed. He woke up briefly at 7:00 PM to go to the bathroom, said he was terribly tired and wanted to go back to sleep, so we put him back in bed for the night. That's where he has been ever since. The health aid from Hospice came this morning at 8:30 to give him a shower and we found him in the same position we had left him last night and could not awake him. She bathed him in bed and he did not budge except for a few grimaces. I'm calm, thinking this is another CL episode but the health aid said he was a bit " different " this time. I check on him every 15 minutes and put my cheek to his and think of all the wonderful times we have had, and the things I have learned, and tell him I love him. There's not much else to do but wait and see if he will come around again to check on his pack of imaginary dogs and the many animals that he now sees and worries about during the day.....in the mysterious land of Lewyville. Peace to all of us going through this trying stage of decision and emotional wear, Stevie * * * * * * * * Hi Stevie My mom now has a stage 3 bed sore on her bottom. And I know exactly what you mean. She has the same thing in the middle of her butt and the stage 3 in on the side. We were using Silver Sulfadiazine Cream, now have switched to MetroGel and for debriding Accuzyme. The hospice nurse explained to me that when the area looks like a scab it is like a ice berg underneath. So as the debriding starts to work, a large area underneath the surface will appear. So now my mom has this stage 3 area that is yucky looking, but it is clean and is healing. It is just really deep and scary to me. She also has a bad ear with one on it and the one on her calf is much better. A new one has appeared on the bottom on her right foot. Which I find totally weird since her feet are always up or she is in bed. She has almost zero pressure on her feet expect when she walks from the bed to the bathroom, which she does still try to do. It is really difficult, but we do do it. Stevie, it is a losing battle. She has one after the other. We just get one cleared up and the next one is there. It makes you feel inept to care for your LO. I will be looking into a NH near my mom next week. I just do not want to be pressured into looking and then have no idea of what to do. I really wanted a residential care, but I do not think they will take her with all the bed sores. Hang in there. At least the weather is holding. Dena --- juperant@... wrote: > Hello , > > Unfortunately my Unc's bed sore have not improved > but have gotten worse. > They look horrible and I won't go into detail but > ........ouch!.....no wonder he > gets grumpy! It started off with one sore on his > bum and now the whole area > where he sits on his bum is black and blue with open > sores (sorry everyone) but > these things really can get serious. > > The nurse explained today that the discoloration is > because the circulation > is very bad (his circulatory system is starting to > break down) and the red scar > like lesions are because the skin is so thin from > lack of eating. He has to > lie down on his side for two hours at a time and > then get turned over for two > more hours. We have Roxinal for pain if he requests > it and a nurse comes to > dress his wounds every day. We'll just have to see > what happens. > > As far as the CNA help, you are very fortunate to > have such good care. It's > a known fact in my area that one does NOT want to > end up in a nursing home > because they are overcrowded and there is not enough > help. Maybe one CNA is > responsible for an average of 22 patients. Try > putting 22 kids to bed at one > time! That's what it's like. > > Thanks again for your concern and I will look into > the lambs wool idea again. > Peace to you, Stevie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Hi, Stevie, Just wanted you to know that you and your uncle are in my thoughts and prayers. I know these are trying and emotional times. I hope he wakes up soon and wants to know what is for dinner. Sending you big hugs, Piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Thank you so much Dena. We call him Mr. B. Much Peace, Stevie * * * * * * * Hi Stevie I will keep you and your Uncle in prayer. I am not sure if you ever shared his name or not. It just helps me when I pray is all. May God bless you both and I pray that you know that He is at work in your life. Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Thank you so much for sending your strength Sharon! My Uncle, the wonderful Mr. B, is still asleep and we are not able to wake him up. It has been 24 hours and I am still calm, waiting, wondering, almost holding my breath, then remembering I must breath and watch and learn, and get through this. I wander into the garage and look at the convertible, still parked in the same spot, waiting to take that ride, it's such a beautiful sunny day! And wondering if I should just have my husband put my Unc in the car and drive like the wind to the Harbor then up the coast for one last spin on this Earth? I settle down a bit and go back into my Uncle's room, he is breathing easily, I hold his hand and tell him I'm here and everything is okay. I will check on him in a while. Bless you every one and have a most Peaceful evening, Stevie * * * * * * * * stevie sending you and your family prayers of strength and your uncle prayers for peace, i know you will miss him terribly but therer comes a point when there lives are not a good quality of life, and it hurts but telling him you love hiim and telling him you will miss him but that you will see him soon, can sometimes allow our loved ones to leave peacefully knowing that you understand and you will be ok. it is hard, very very hard, but ...... sendng you strength , hugs and love, sharon m -- Re: Re: Hi Stevie update Hello Dena and All, Well, my Uncle's bed sores look a bit better today but, unfortunately, he is already in another " comatose-Lewy " state. He slept in bed most of the day yesterday (very uncharacteristic of him) waking up once in the afternoon (3:45) because he wanted to go to the table. I put him in his wheelchair, fed him a late lunch of which he had a very hard time eating with his good hand, and then he wanted to get back in bed. He woke up briefly at 7:00 PM to go to the bathroom, said he was terribly tired and wanted to go back to sleep, so we put him back in bed for the night. That's where he has been ever since. The health aid from Hospice came this morning at 8:30 to give him a shower and we found him in the same position we had left him last night and could not awake him. She bathed him in bed and he did not budge except for a few grimaces. I'm calm, thinking this is another CL episode but the health aid said he was a bit " different " this time. I check on him every 15 minutes and put my cheek to his and think of all the wonderful times we have had, and the things I have learned, and tell him I love him. There's not much else to do but wait and see if he will come around again to check on his pack of imaginary dogs and the many animals that he now sees and worries about during the day.....in the mysterious land of Lewyville. Peace to all of us going through this trying stage of decision and emotional wear, Stevie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Thank you so much Piper! He missed breakfast, lunch and dinner so far. He is still sleeping and we cannot wake him as of yet. I just checked on him and he did...or I thought he did..squeeze my hand. Thank you so much for being here! Much Peace to you, Stevie * * * * * * * Hi, Stevie, Just wanted you to know that you and your uncle are in my thoughts and prayers. I know these are trying and emotional times. I hope he wakes up soon and wants to know what is for dinner. Sending you big hugs, Piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Hi Stevie I will keep you and your Uncle in prayer. I am not sure if you ever shared his name or not. It just helps me when I pray is all. May God bless you both and I pray that you know that He is at work in your life. Dena --- juperant@... wrote: > Hello Dena and All, > > Well, my Uncle's bed sores look a bit better today > but, unfortunately, he is > already in another " comatose-Lewy " state. He slept > in bed most of the day > yesterday (very uncharacteristic of him) waking up > once in the afternoon (3:45) > because he wanted to go to the table. I put him in > his wheelchair, fed him a > late lunch of which he had a very hard time eating > with his good hand, and then > he wanted to get back in bed. > > He woke up briefly at 7:00 PM to go to the bathroom, > said he was terribly > tired and wanted to go back to sleep, so we put him > back in bed for the night. > That's where he has been ever since. > > The health aid from Hospice came this morning at > 8:30 to give him a shower > and we found him in the same position we had left > him last night and could not > awake him. She bathed him in bed and he did not > budge except for a few > grimaces. I'm calm, thinking this is another CL > episode but the health aid said he > was a bit " different " this time. > > I check on him every 15 minutes and put my cheek to > his and think of all the > wonderful times we have had, and the things I have > learned, and tell him I > love him. > > There's not much else to do but wait and see if he > will come around again to > check on his pack of imaginary dogs and the many > animals that he now sees and > worries about during the day.....in the mysterious > land of Lewyville. > > Peace to all of us going through this trying stage > of decision and emotional > wear, Stevie > > * * * * * * * * > > > > Hi Stevie > > My mom now has a stage 3 bed sore on her bottom. And > I > know exactly what you mean. She has the same thing > in > the middle of her butt and the stage 3 in on the > side. > We were using Silver Sulfadiazine Cream, now have > switched to MetroGel and for debriding Accuzyme. The > hospice nurse explained to me that when the area > looks > like a scab it is like a ice berg underneath. So as > the debriding starts to work, a large area > underneath > the surface will appear. So now my mom has this > stage > 3 area that is yucky looking, but it is clean and is > healing. It is just really deep and scary to me. She > also has a bad ear with one on it and the one on her > calf is much better. A new one has appeared on the > bottom on her right foot. Which I find totally weird > since her feet are always up or she is in bed. She > has > almost zero pressure on her feet expect when she > walks > from the bed to the bathroom, which she does still > try > to do. It is really difficult, but we do do it. > Stevie, it is a losing battle. She has one after the > other. We just get one cleared up and the next one > is > there. It makes you feel inept to care for your LO. > I > will be looking into a NH near my mom next week. I > just do not want to be pressured into looking and > then > have no idea of what to do. I really wanted a > residential care, but I do not think they will take > her with all the bed sores. Hang in there. At least > the weather is holding. > > Dena > > --- juperant@... wrote: > > > Hello , > > > > Unfortunately my Unc's bed sore have not improved > > but have gotten worse. > > They look horrible and I won't go into detail but > > ........ouch!.....no wonder he > > gets grumpy! It started off with one sore on his > > bum and now the whole area > > where he sits on his bum is black and blue with > open > > sores (sorry everyone) but > > these things really can get serious. > > > > The nurse explained today that the discoloration > is > > because the circulation > > is very bad (his circulatory system is starting to > > break down) and the red scar > > like lesions are because the skin is so thin from > > lack of eating. He has to > > lie down on his side for two hours at a time and > > then get turned over for two > > more hours. We have Roxinal for pain if he > requests > > it and a nurse comes to > > dress his wounds every day. We'll just have to > see > > what happens. > > > > As far as the CNA help, you are very fortunate to > > have such good care. It's > > a known fact in my area that one does NOT want to > > end up in a nursing home > > because they are overcrowded and there is not > enough > > help. Maybe one CNA is > > responsible for an average of 22 patients. Try > > putting 22 kids to bed at one > > time! That's what it's like. > > > > Thanks again for your concern and I will look into > > the lambs wool idea again. > > Peace to you, Stevie > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Hello Jan, One more write and then I will try to get some sleep. You all have been such a comfort in the quietness of today. No breakfast, lunch or dinner, or wheelchair, or bathroom duties, or bells ringing, or drooling or imaginary friends, or TV on all day to remind me that he is here. Just the eerie silence of his empty blue chair, vacant except for the soft yellow blanket I made to cover his long legs and a tired thought of what tomorrow will bring. The ups and downs of Lewyville. You never know do you? I can hear him ringing now...LOL. Have a wonderful night and God bless you all. Peace, Stevie * * * * * * * * * Hi Stevie, It is so hard to read about your Uncle. This can happen to any one of our LOs within a matter of days just as it has yours. I HATE this disgusting, frustrating, hair pulling, heart tugging disease. It is such an emotional roller coaster. How often I have wished when Jim is up and down all night long that he would go to sleep and stay there, so I get some sleep. Yet, if he slept for 24 hours, I would wish him back to being up and down all night. No matter where you are in this disease it's hard. My thoughts and prayers are with you Stevie, I'm so sorry you and your Uncle are having to suffer through this. Hugs, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 stevie sending you and your family prayers of strength and your uncle prayers for peace, i know you will miss him terribly but therer comes a point when there lives are not a good quality of life, and it hurts but telling him you love hiim and telling him you will miss him but that you will see him soon, can sometimes allow our loved ones to leave peacefully knowing that you understand and you will be ok. it is hard, very very hard, but ...... sendng you strength , hugs and love, sharon m -- Re: Re: Hi Stevie update Hello Dena and All, Well, my Uncle's bed sores look a bit better today but, unfortunately, he is already in another " comatose-Lewy " state. He slept in bed most of the day yesterday (very uncharacteristic of him) waking up once in the afternoon (3:45) because he wanted to go to the table. I put him in his wheelchair, fed him a late lunch of which he had a very hard time eating with his good hand, and then he wanted to get back in bed. He woke up briefly at 7:00 PM to go to the bathroom, said he was terribly tired and wanted to go back to sleep, so we put him back in bed for the night. That's where he has been ever since. The health aid from Hospice came this morning at 8:30 to give him a shower and we found him in the same position we had left him last night and could not awake him. She bathed him in bed and he did not budge except for a few grimaces. I'm calm, thinking this is another CL episode but the health aid said he was a bit " different " this time. I check on him every 15 minutes and put my cheek to his and think of all the wonderful times we have had, and the things I have learned, and tell him I love him. There's not much else to do but wait and see if he will come around again to check on his pack of imaginary dogs and the many animals that he now sees and worries about during the day.....in the mysterious land of Lewyville. Peace to all of us going through this trying stage of decision and emotional wear, Stevie * * * * * * * * Hi Stevie My mom now has a stage 3 bed sore on her bottom. And I know exactly what you mean. She has the same thing in the middle of her butt and the stage 3 in on the side. We were using Silver Sulfadiazine Cream, now have switched to MetroGel and for debriding Accuzyme. The hospice nurse explained to me that when the area looks like a scab it is like a ice berg underneath. So as the debriding starts to work, a large area underneath the surface will appear. So now my mom has this stage 3 area that is yucky looking, but it is clean and is healing. It is just really deep and scary to me. She also has a bad ear with one on it and the one on her calf is much better. A new one has appeared on the bottom on her right foot. Which I find totally weird since her feet are always up or she is in bed. She has almost zero pressure on her feet expect when she walks from the bed to the bathroom, which she does still try to do. It is really difficult, but we do do it. Stevie, it is a losing battle. She has one after the other. We just get one cleared up and the next one is there. It makes you feel inept to care for your LO. I will be looking into a NH near my mom next week. I just do not want to be pressured into looking and then have no idea of what to do. I really wanted a residential care, but I do not think they will take her with all the bed sores. Hang in there. At least the weather is holding. Dena --- juperant@... wrote: > Hello , > > Unfortunately my Unc's bed sore have not improved > but have gotten worse. > They look horrible and I won't go into detail but > ........ouch!.....no wonder he > gets grumpy! It started off with one sore on his > bum and now the whole area > where he sits on his bum is black and blue with open > sores (sorry everyone) but > these things really can get serious. > > The nurse explained today that the discoloration is > because the circulation > is very bad (his circulatory system is starting to > break down) and the red scar > like lesions are because the skin is so thin from > lack of eating. He has to > lie down on his side for two hours at a time and > then get turned over for two > more hours. We have Roxinal for pain if he requests > it and a nurse comes to > dress his wounds every day. We'll just have to see > what happens. > > As far as the CNA help, you are very fortunate to > have such good care. It's > a known fact in my area that one does NOT want to > end up in a nursing home > because they are overcrowded and there is not enough > help. Maybe one CNA is > responsible for an average of 22 patients. Try > putting 22 kids to bed at one > time! That's what it's like. > > Thanks again for your concern and I will look into > the lambs wool idea again. > Peace to you, Stevie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Hi Stevie, It is so hard to read about your Uncle. This can happen to any one of our LOs within a matter of days just as it has yours. I HATE this disgusting, frustrating, hair pulling, heart tugging disease. It is such an emotional roller coaster. How often I have wished when Jim is up and down all night long that he would go to sleep and stay there, so I get some sleep. Yet, if he slept for 24 hours, I would wish him back to being up and down all night. No matter where you are in this disease it's hard. My thoughts and prayers are with you Stevie, I'm so sorry you and your Uncle are having to suffer through this. Hugs, Jan --- juperant@... wrote: > Hello Dena and All, > > Well, my Uncle's bed sores look a bit better today > but, unfortunately, he is > already in another " comatose-Lewy " state. He slept > in bed most of the day > yesterday (very uncharacteristic of him) waking up > once in the afternoon (3:45) > because he wanted to go to the table. I put him in > his wheelchair, fed him a > late lunch of which he had a very hard time eating > with his good hand, and then > he wanted to get back in bed. > > He woke up briefly at 7:00 PM to go to the bathroom, > said he was terribly > tired and wanted to go back to sleep, so we put him > back in bed for the night. > That's where he has been ever since. > > The health aid from Hospice came this morning at > 8:30 to give him a shower > and we found him in the same position we had left > him last night and could not > awake him. She bathed him in bed and he did not > budge except for a few > grimaces. I'm calm, thinking this is another CL > episode but the health aid said he > was a bit " different " this time. > > I check on him every 15 minutes and put my cheek to > his and think of all the > wonderful times we have had, and the things I have > learned, and tell him I > love him. > > There's not much else to do but wait and see if he > will come around again to > check on his pack of imaginary dogs and the many > animals that he now sees and > worries about during the day.....in the mysterious > land of Lewyville. > > Peace to all of us going through this trying stage > of decision and emotional > wear, Stevie > > * * * * * * * * > > > > Hi Stevie > > My mom now has a stage 3 bed sore on her bottom. And > I > know exactly what you mean. She has the same thing > in > the middle of her butt and the stage 3 in on the > side. > We were using Silver Sulfadiazine Cream, now have > switched to MetroGel and for debriding Accuzyme. The > hospice nurse explained to me that when the area > looks > like a scab it is like a ice berg underneath. So as > the debriding starts to work, a large area > underneath > the surface will appear. So now my mom has this > stage > 3 area that is yucky looking, but it is clean and is > healing. It is just really deep and scary to me. She > also has a bad ear with one on it and the one on her > calf is much better. A new one has appeared on the > bottom on her right foot. Which I find totally weird > since her feet are always up or she is in bed. She > has > almost zero pressure on her feet expect when she > walks > from the bed to the bathroom, which she does still > try > to do. It is really difficult, but we do do it. > Stevie, it is a losing battle. She has one after the > other. We just get one cleared up and the next one > is > there. It makes you feel inept to care for your LO. > I > will be looking into a NH near my mom next week. I > just do not want to be pressured into looking and > then > have no idea of what to do. I really wanted a > residential care, but I do not think they will take > her with all the bed sores. Hang in there. At least > the weather is holding. > > Dena > > --- juperant@... wrote: > > > Hello , > > > > Unfortunately my Unc's bed sore have not improved > > but have gotten worse. > > They look horrible and I won't go into detail but > > ........ouch!.....no wonder he > > gets grumpy! It started off with one sore on his > > bum and now the whole area > > where he sits on his bum is black and blue with > open > > sores (sorry everyone) but > > these things really can get serious. > > > > The nurse explained today that the discoloration > is > > because the circulation > > is very bad (his circulatory system is starting to > > break down) and the red scar > > like lesions are because the skin is so thin from > > lack of eating. He has to > > lie down on his side for two hours at a time and > > then get turned over for two > > more hours. We have Roxinal for pain if he > requests > > it and a nurse comes to > > dress his wounds every day. We'll just have to > see > > what happens. > > > > As far as the CNA help, you are very fortunate to > > have such good care. It's > > a known fact in my area that one does NOT want to > > end up in a nursing home > > because they are overcrowded and there is not > enough > > help. Maybe one CNA is > > responsible for an average of 22 patients. Try > > putting 22 kids to bed at one > > time! That's what it's like. > > > > Thanks again for your concern and I will look into > > the lambs wool idea again. > > Peace to you, Stevie > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Stevie - My prayers are with you. These are such hard times and you are not alone. God bless you, in WA Re: Re: Hi Stevie update Thank you so much for sending your strength Sharon! My Uncle, the wonderful Mr. B, is still asleep and we are not able to wake him up. It has been 24 hours and I am still calm, waiting, wondering, almost holding my breath, then remembering I must breath and watch and learn, and get through this. I wander into the garage and look at the convertible, still parked in the same spot, waiting to take that ride, it's such a beautiful sunny day! And wondering if I should just have my husband put my Unc in the car and drive like the wind to the Harbor then up the coast for one last spin on this Earth? I settle down a bit and go back into my Uncle's room, he is breathing easily, I hold his hand and tell him I'm here and everything is okay. I will check on him in a while. Bless you every one and have a most Peaceful evening, Stevie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Thank you so much for your concern . I am so glad you are here when I take a break. Peace, Stevie * * * * * * * * Yes, Stevie, I too have been thinking about you and wondering about your uncle. Please keep us posted as you can. > > Dear Stevie - > I'm wondering how things are going and wanted to let you know that I've been praying for you all weekend. It's never too late to pray for a miracle, but I also pray that you find peace and comfort. > in WA Quote Link to comment Share on other sites More sharing options...
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