Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 I'm sorry I haven't been able to update everyone sooner - its just too hard to write about. But my Dad passed on April 14... I'll copy stuff from the journal I wrote for those interested in the details - below. This is so awful and I pray for all of you who will be taking this journey ! Those of us that have know how difficult is is ! All I can say is keep your LO out of the hosp/rehab/AL if at all possible! HUGS donna cg to Dad ===================================== Dad had been back and forth between rehab and the hospital since Jan 31 when we had to call 911 when he collapsed at home and we couldn't budge him or get him to take any pills etc. Then we got a call that Dad was being moved to hosptial from rehab again on March 31. Multiple infections ! Pneumonia, UTI,c.Diff, Merced infection of the PIC line they put in (which Care-1 never took care of). The bed sore on his butt was infected (of course the fact that they never kept it clean). All this became sepsis ! The ID guy said he never saw so many different infections in one person. They told us to call the dept of Health and Senior services and report Care-1. So I did and they will supposedly investigate. However his BP kept dropping. On April 1 it must have dropped very low and his heart rate went up over 200. The hospital called us and asked about life support so we had him put on a respirator. It was all so sudden. My mom was there we didn't know what to do - so we said do what-ever it takes. They started pumping IV fluids through him at the rate of 500ml per hour. He started getting puffy as fluids were leaking out of the veins and into the interstitial space. We called my sister and she flew back on Friday from Miami. His WBC was 58K then it went down to 30 then 25 -it went down to 15 for 2 days - they even started weaning him from the respirator and he was doing well again. It seamed like he knew us and would try to squeeze our hands. They started giving him Lasix to remove some of the water. We thought he'd pull out. We wanted so much to just bring him home - even if we had to get Hospice or some other kind of help. But then it started going back up again (20 then 30) a CAT scan showed his bowel and colon were completely inflamed and started to become ischemic. His stomach was really hard and distended and he seemed to wince when we touched it. He also had constant diarrhea. They said normally they would have done a colostomy but Dad was in no shape to survive the surgery. They talked us into a DNR - but we would wait to see what happened after that. They would give him the antibiotics but they had to stop the tube feedings and switched to something else (TNP? - which has protein and nutrients but it goes in IV not through the feeding tube). They gave him some morphine to make him comfortable but of course that lowers BP so they had to give him Levaphed and fluids to keep the pressure up. He gained about 30 pounds in fluids in the last few days. He pretty much stayed the same over the weekend. My sister kept trying to convince us we couldn't leave him like that. She wanted to remove the respirator. The doc said he was concerned that the low BP might have lead to insufficient oxygen to the brain and combined with the parkinsons/LB/dementia that Dad might not ever really be the same - even if they could clear the infections. This may be true since now when Dad opened his eyes he seemed to stare beyond us and not really look AT us. So we had all the family come in and on Tuesday - with me and my mom - my sister - her kids (mine are too young for that) - my dad's brother and his other brother's son (that brother is 90 and ailing a bit himself) - we decided to remove the respirator the next morning. However - when we came in - the nurse told us that his BP was up in the 90's and they had been weaning him from the respirator over night - so the Doc felt that dad would live w/o the respirator. I thought maybe we should wait and let them continue the weaning process but my sister didn't want him lingering like that so they removed it then. When we came back in and sure enough Dad was breathing on his own. We were all relieved - he would go in his own time - or maybe he would come back to us. Then all of a sudden I saw the color leave his face - I could almost SEE the life leave his body. He breathing became slower and shallow and then he was gone ! We couldn't believe it happened that fast. Within 15 min of removing the respirator he was gone. This is the part I can't get passed. I later found out my sister had them increase the morphine - supposedly to make him more comfortable - but really just to hurry things along. She says she didn't want him lingering - but basically it was just so she could go home and back to their lives. Sometime I feel like we killed our Dad ! I should have stopped her - but I didn't know until it was too late - but I saw her talking to the nurse (and she's and ICU nurse herself) so I should have went over to see but I was bringing my kids in to see Dad for a while (at least now without the tubes he didn't look so bad - and gaining the 30 pounds made his face look better too !). (My son is 5 and missed Grampa being home terribly since he lived with us). Now I feel like we let him down and didn't give him a chance to recover or at least to come home for a while. The only thing that helps is that my daughter - who is only 3 said to me - " don't cry mommie - grampa's happy now " and I said to her who told you that - she said " grampa told me - he gave me a kiss and said goodby and that he's happy now ! " I nearly passed out ! I know it sounds like a lot for a 3yo to say but she's been talking in full sentences since last summer and she's been dragged to the hospital everyday for the last 3 months so she understands all that. I'm sure she doesn't understand dying but she knows grampa isn't coming home. So I take some comfort in her words - where-ever she got them from. I hope Dad is in a better place and that he forgives us for putting him in the rehab place (it was only supposed to be for 21 days !)... I feel like I let him down. But today with Reagan dying from Alz/pneumonia I said to my husband - one of the most powerful men in the world and no-one could help him either ! Its so sad ! 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Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Donna, Based on what you wrote, I don't believe anyone let your dad down. Yes, of course you miss him and always will. But part of our jobs as caregivers is to help them transition out of this world and into the next. They rely on us for that. Please believe that all the best efforts were made for your dad to go on to where he's happy beyond our comprehension. All the best to you. Anne At 11:50 PM 6/6/2004 -0400, you wrote: >I'm sorry I haven't been able to update everyone sooner - its just >too hard to write about. > >But my Dad passed on April 14... > >I'll copy stuff from the journal I wrote for those interested in >the details - below. > >This is so awful and I pray for all of you who will be taking this >journey ! Those of us that have know how difficult is is ! > >All I can say is keep your LO out of the hosp/rehab/AL if at all possible! > >HUGS > >donna >cg to Dad > >===================================== > >Dad had been back and forth between rehab and the hospital since Jan 31 >when we had to call 911 when he collapsed at home and we couldn't budge him >or get him to take any pills etc. > >Then we got a call that Dad was being moved to hosptial from rehab again >on March 31. > >Multiple infections ! Pneumonia, UTI,c.Diff, Merced infection of the PIC >line they put in (which Care-1 never took care of). The bed sore on his >butt was infected (of course the fact that they never kept it clean). > >All this became sepsis ! The ID guy said he never saw so many different >infections in one person. They told us to call the dept of Health and >Senior services and report Care-1. So I did and they will supposedly >investigate. > >However his BP kept dropping. On April 1 it must have dropped very >low and his heart rate went up over 200. The hospital called us and asked >about life support so we had him put on a respirator. It was all so >sudden. My mom was there we didn't know what to do - so we said do >what-ever it takes. > >They started pumping IV fluids through him at the rate of 500ml per hour. >He started getting puffy as fluids were leaking out of the veins and into >the interstitial space. > >We called my sister and she flew back on Friday from Miami. > >His WBC was 58K then it went down to 30 then 25 -it went down to 15 for 2 >days - they even started weaning him from the respirator and he was doing >well again. It seamed like he knew us and would try to squeeze our hands. >They started giving him Lasix to remove some of the water. We thought he'd >pull out. We wanted so much to just bring him home - even if we had to get >Hospice or some other kind of help. > >But then it started going back up again (20 then 30) a CAT scan showed his >bowel and colon were completely inflamed and started to become ischemic. >His stomach was really hard and distended and he seemed to wince when we >touched it. He also had constant diarrhea. They said normally they would >have done a colostomy but Dad was in no shape to survive the surgery. > >They talked us into a DNR - but we would wait to see what happened after >that. > >They would give him the antibiotics but they had to stop the tube feedings >and switched to something else (TNP? - which has protein and nutrients but >it goes in IV not through the feeding tube). They gave him some morphine >to make him comfortable but of course that lowers BP so they had to give >him Levaphed and fluids to keep the pressure up. He gained about 30 pounds >in fluids in the last few days. > >He pretty much stayed the same over the weekend. My sister kept trying to >convince us we couldn't leave him like that. She wanted to remove the >respirator. The doc said he was concerned that the low BP might have lead >to insufficient oxygen to the brain and combined with the >parkinsons/LB/dementia that Dad might not ever really be the same - even >if they could clear the infections. This may be true since now when Dad >opened his eyes he seemed to stare beyond us and not really look AT us. > >So we had all the family come in and on Tuesday - with me and my mom - my >sister - her kids (mine are too young for that) - my dad's brother and his >other brother's son (that brother is 90 and ailing a bit himself) - we >decided to remove the respirator the next morning. > >However - when we came in - the nurse told us that his BP was up in the >90's and they had been weaning him from the respirator over night - so the >Doc felt that dad would live w/o the respirator. > >I thought maybe we should wait and let them continue the weaning process >but my sister didn't want him lingering like that so they removed it >then. When we came back in and sure enough Dad was breathing on his own. > >We were all relieved - he would go in his own time - or maybe he would >come back to us. Then all of a sudden I saw the color leave his face - I >could almost SEE the life leave his body. He breathing became slower and >shallow and then he was gone ! We couldn't believe it happened that fast. >Within 15 min of removing the respirator he was gone. > >This is the part I can't get passed. I later found out my sister had them >increase the morphine - supposedly to make him more comfortable - but >really just to hurry things along. She says she didn't want him lingering >- but basically it was just so she could go home and back to their lives. > >Sometime I feel like we killed our Dad ! I should have stopped her - but I >didn't know until it was too late - but I saw her talking to the nurse >(and she's and ICU nurse herself) so I should have went over to see but I >was bringing my kids in to see Dad for a while (at least now without the >tubes he didn't look so bad - and gaining the 30 pounds made his face look >better too !). (My son is >5 and missed Grampa being home terribly since he lived with us). > >Now I feel like we let him down and didn't give him a chance to recover or >at least to come home for a while. > >The only thing that helps is that my daughter - who is only 3 said to me - > " don't cry mommie - grampa's happy now " and I said to her who told you >that - she said " grampa told me - he gave me a kiss and said goodby and >that he's happy now ! " >I nearly passed out ! I know it sounds like a lot for a 3yo to say but >she's been talking in full sentences since last summer and she's been >dragged to the hospital everyday for the last 3 months so she understands >all that. I'm sure she doesn't understand dying but she knows grampa >isn't coming home. So I take some comfort in her words - where-ever she >got them from. > >I hope Dad is in a better place and that he forgives us for putting him >in the rehab place (it was only supposed to be for 21 days !)... I feel like >I let him down. But today with Reagan dying from Alz/pneumonia I said to >my husband - one of the most powerful men in the world and no-one could >help him either ! Its so sad ! > > >Welcome to LBDcaregivers. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Donna I am so sorry for the loss of your dad. You stop feeling guilty though, you did EVERYTHING you could to make his life better. It was not your sister or you or any other family member that killed your dad. It was LBD. You didn't want him to suffer any longer than necessary and neither did your sister. It sounds like it was peaceful for him in the end. We all would like to die at home but this is not always possible. He had his family around him and I am sure took comfort in that. Take care of your self and hang on tight to your children and that very smart 3 yr. old. Children sometimes have insight that adults don't have. Lots of hugs and love Kath My Dad is gone ! > > > I'm sorry I haven't been able to update everyone sooner - its just > too hard to write about. > > But my Dad passed on April 14... > > I'll copy stuff from the journal I wrote for those interested in > the details - below. > > This is so awful and I pray for all of you who will be taking this > journey ! Those of us that have know how difficult is is ! > > All I can say is keep your LO out of the hosp/rehab/AL if at all possible! > > HUGS > > donna > cg to Dad > > ===================================== > > Dad had been back and forth between rehab and the hospital since Jan 31 > when we had to call 911 when he collapsed at home and we couldn't budge him > or get him to take any pills etc. > > Then we got a call that Dad was being moved to hosptial from rehab again on March 31. > > Multiple infections ! Pneumonia, UTI,c.Diff, Merced infection of the PIC line they put in (which Care-1 never took care of). The bed sore on his butt was infected (of course the fact that they never kept it clean). > > All this became sepsis ! The ID guy said he never saw so many different infections in one person. They told us to call the dept of Health and Senior services and report Care-1. So I did and they will supposedly investigate. > > However his BP kept dropping. On April 1 it must have dropped very low and his heart rate went up over 200. The hospital called us and asked about life support so we had him put on a respirator. It was all so sudden. My mom was there we didn't know what to do - so we said do what-ever it takes. > > They started pumping IV fluids through him at the rate of 500ml per hour. He started getting puffy as fluids were leaking out of the veins and into the interstitial space. > > We called my sister and she flew back on Friday from Miami. > > His WBC was 58K then it went down to 30 then 25 -it went down to 15 for 2 days - they even started weaning him from the respirator and he was doing well again. It seamed like he knew us and would try to squeeze our hands. They started giving him Lasix to remove some of the water. We thought he'd pull out. We wanted so much to just bring him home - even if we had to get Hospice or some other kind of help. > > But then it started going back up again (20 then 30) a CAT scan showed his bowel and colon were completely inflamed and started to become ischemic. His stomach was really hard and distended and he seemed to wince when we touched it. He also had constant diarrhea. They said normally they would have done a colostomy but Dad was in no shape to survive the surgery. > > They talked us into a DNR - but we would wait to see what happened after that. > > They would give him the antibiotics but they had to stop the tube feedings and switched to something else (TNP? - which has protein and nutrients but it goes in IV not through the feeding tube). They gave him some morphine to make him comfortable but of course that lowers BP so they had to give him Levaphed and fluids to keep the pressure up. He gained about 30 pounds in fluids in the last few days. > > He pretty much stayed the same over the weekend. My sister kept trying to convince us we couldn't leave him like that. She wanted to remove the respirator. The doc said he was concerned that the low BP might have lead to insufficient oxygen to the brain and combined with the parkinsons/LB/dementia that Dad might not ever really be the same - even if they could clear the infections. This may be true since now when Dad opened his eyes he seemed to stare beyond us and not really look AT us. > > So we had all the family come in and on Tuesday - with me and my mom - my sister - her kids (mine are too young for that) - my dad's brother and his other brother's son (that brother is 90 and ailing a bit himself) - we decided to remove the respirator the next morning. > > However - when we came in - the nurse told us that his BP was up in the 90's and they had been weaning him from the respirator over night - so the Doc felt that dad would live w/o the respirator. > > I thought maybe we should wait and let them continue the weaning process but my sister didn't want him lingering like that so they removed it then. When we came back in and sure enough Dad was breathing on his own. > > We were all relieved - he would go in his own time - or maybe he would come back to us. Then all of a sudden I saw the color leave his face - I could almost SEE the life leave his body. He breathing became slower and shallow and then he was gone ! We couldn't believe it happened that fast. Within 15 min of removing the respirator he was gone. > > This is the part I can't get passed. I later found out my sister had them increase the morphine - supposedly to make him more comfortable - but really just to hurry things along. She says she didn't want him lingering - but basically it was just so she could go home and back to their lives. > > Sometime I feel like we killed our Dad ! I should have stopped her - but I didn't know until it was too late - but I saw her talking to the nurse (and she's and ICU nurse herself) so I should have went over to see but I was bringing my kids in to see Dad for a while (at least now without the tubes he didn't look so bad - and gaining the 30 pounds made his face look better too !). (My son is > 5 and missed Grampa being home terribly since he lived with us). > > Now I feel like we let him down and didn't give him a chance to recover or at least to come home for a while. > > The only thing that helps is that my daughter - who is only 3 said to me - " don't cry mommie - grampa's happy now " and I said to her who told you that - she said " grampa told me - he gave me a kiss and said goodby and that he's happy now ! " > I nearly passed out ! I know it sounds like a lot for a 3yo to say but she's been talking in full sentences since last summer and she's been dragged to the hospital everyday for the last 3 months so she understands all that. I'm sure she doesn't understand dying but she knows grampa isn't coming home. So I take some comfort in her words - where-ever she got them from. > > I hope Dad is in a better place and that he forgives us for putting him > in the rehab place (it was only supposed to be for 21 days !)... I feel like > I let him down. But today with Reagan dying from Alz/pneumonia I said to > my husband - one of the most powerful men in the world and no-one could > help him either ! Its so sad ! > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Donna, I am so sorry to hear of your Dad's passsing. I wish I could reach through this computer and give you a big hug. You are a wonderful daughter, and do not ever think you let your dad down. I read a quote this morning that Reagan made in 2000. She said " You get tired and frustrated, because you have no control and you feel helpless. " Reagan had the resources of the world available to her, and she still felt helpless. We can all just do the best we can to get through it. You will be in my thoughts and prayers. Let us know how you are doing when you can. Much love, Piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Donna: My heart is breaking for you but I have to say I agree with the wisdom of your daughter: wherever your dad is and I'm believing in heaven a great deal lately... I think he's happier too. Please know my prayers will include your dad and your entire family. I'm proud of how diligent and careful you were with your dad and I know he is too. You gave him life....LBD gave him death. Please try to think of this. Thinking of you tonight, Abby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Donna- I'm so sorry to hear of your dad passing away. Please don't feel guilty. Your dad knows you did your best and now he is free from this horrible disease. I know it still hurts. Sending you and your family my prayers. Hugs- Sharon My Dad is gone ! I'm sorry I haven't been able to update everyone sooner - its just too hard to write about. But my Dad passed on April 14... I'll copy stuff from the journal I wrote for those interested in the details - below. This is so awful and I pray for all of you who will be taking this journey ! Those of us that have know how difficult is is ! All I can say is keep your LO out of the hosp/rehab/AL if at all possible! HUGS donna cg to Dad ===================================== Dad had been back and forth between rehab and the hospital since Jan 31 when we had to call 911 when he collapsed at home and we couldn't budge him or get him to take any pills etc. Then we got a call that Dad was being moved to hosptial from rehab again on March 31. Multiple infections ! Pneumonia, UTI,c.Diff, Merced infection of the PIC line they put in (which Care-1 never took care of). The bed sore on his butt was infected (of course the fact that they never kept it clean). All this became sepsis ! The ID guy said he never saw so many different infections in one person. They told us to call the dept of Health and Senior services and report Care-1. So I did and they will supposedly investigate. However his BP kept dropping. On April 1 it must have dropped very low and his heart rate went up over 200. The hospital called us and asked about life support so we had him put on a respirator. It was all so sudden. My mom was there we didn't know what to do - so we said do what-ever it takes. They started pumping IV fluids through him at the rate of 500ml per hour. He started getting puffy as fluids were leaking out of the veins and into the interstitial space. We called my sister and she flew back on Friday from Miami. His WBC was 58K then it went down to 30 then 25 -it went down to 15 for 2 days - they even started weaning him from the respirator and he was doing well again. It seamed like he knew us and would try to squeeze our hands. They started giving him Lasix to remove some of the water. We thought he'd pull out. We wanted so much to just bring him home - even if we had to get Hospice or some other kind of help. But then it started going back up again (20 then 30) a CAT scan showed his bowel and colon were completely inflamed and started to become ischemic. His stomach was really hard and distended and he seemed to wince when we touched it. He also had constant diarrhea. They said normally they would have done a colostomy but Dad was in no shape to survive the surgery. They talked us into a DNR - but we would wait to see what happened after that. They would give him the antibiotics but they had to stop the tube feedings and switched to something else (TNP? - which has protein and nutrients but it goes in IV not through the feeding tube). They gave him some morphine to make him comfortable but of course that lowers BP so they had to give him Levaphed and fluids to keep the pressure up. He gained about 30 pounds in fluids in the last few days. He pretty much stayed the same over the weekend. My sister kept trying to convince us we couldn't leave him like that. She wanted to remove the respirator. The doc said he was concerned that the low BP might have lead to insufficient oxygen to the brain and combined with the parkinsons/LB/dementia that Dad might not ever really be the same - even if they could clear the infections. This may be true since now when Dad opened his eyes he seemed to stare beyond us and not really look AT us. So we had all the family come in and on Tuesday - with me and my mom - my sister - her kids (mine are too young for that) - my dad's brother and his other brother's son (that brother is 90 and ailing a bit himself) - we decided to remove the respirator the next morning. However - when we came in - the nurse told us that his BP was up in the 90's and they had been weaning him from the respirator over night - so the Doc felt that dad would live w/o the respirator. I thought maybe we should wait and let them continue the weaning process but my sister didn't want him lingering like that so they removed it then. When we came back in and sure enough Dad was breathing on his own. We were all relieved - he would go in his own time - or maybe he would come back to us. Then all of a sudden I saw the color leave his face - I could almost SEE the life leave his body. He breathing became slower and shallow and then he was gone ! We couldn't believe it happened that fast. Within 15 min of removing the respirator he was gone. This is the part I can't get passed. I later found out my sister had them increase the morphine - supposedly to make him more comfortable - but really just to hurry things along. She says she didn't want him lingering - but basically it was just so she could go home and back to their lives. Sometime I feel like we killed our Dad ! I should have stopped her - but I didn't know until it was too late - but I saw her talking to the nurse (and she's and ICU nurse herself) so I should have went over to see but I was bringing my kids in to see Dad for a while (at least now without the tubes he didn't look so bad - and gaining the 30 pounds made his face look better too !). (My son is 5 and missed Grampa being home terribly since he lived with us). Now I feel like we let him down and didn't give him a chance to recover or at least to come home for a while. The only thing that helps is that my daughter - who is only 3 said to me - " don't cry mommie - grampa's happy now " and I said to her who told you that - she said " grampa told me - he gave me a kiss and said goodby and that he's happy now ! " I nearly passed out ! I know it sounds like a lot for a 3yo to say but she's been talking in full sentences since last summer and she's been dragged to the hospital everyday for the last 3 months so she understands all that. I'm sure she doesn't understand dying but she knows grampa isn't coming home. So I take some comfort in her words - where-ever she got them from. I hope Dad is in a better place and that he forgives us for putting him in the rehab place (it was only supposed to be for 21 days !)... I feel like I let him down. But today with Reagan dying from Alz/pneumonia I said to my husband - one of the most powerful men in the world and no-one could help him either ! Its so sad ! Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Donna, I am so sorry. Please write and let us know how you are doing. Courage My Dad is gone ! > > >I'm sorry I haven't been able to update everyone sooner - its just >too hard to write about. > >But my Dad passed on April 14... > >I'll copy stuff from the journal I wrote for those interested in >the details - below. > >This is so awful and I pray for all of you who will be taking this >journey ! Those of us that have know how difficult is is ! > >All I can say is keep your LO out of the hosp/rehab/AL if at all possible! > >HUGS > >donna >cg to Dad > >===================================== > >Dad had been back and forth between rehab and the hospital since Jan 31 >when we had to call 911 when he collapsed at home and we couldn't budge him >or get him to take any pills etc. > >Then we got a call that Dad was being moved to hosptial from rehab again on March 31. > >Multiple infections ! Pneumonia, UTI,c.Diff, Merced infection of the PIC line they put in (which Care-1 never took care of). The bed sore on his butt was infected (of course the fact that they never kept it clean). > >All this became sepsis ! The ID guy said he never saw so many different infections in one person. They told us to call the dept of Health and Senior services and report Care-1. So I did and they will supposedly investigate. > >However his BP kept dropping. On April 1 it must have dropped very low and his heart rate went up over 200. The hospital called us and asked about life support so we had him put on a respirator. It was all so sudden. My mom was there we didn't know what to do - so we said do what-ever it takes. > >They started pumping IV fluids through him at the rate of 500ml per hour. He started getting puffy as fluids were leaking out of the veins and into the interstitial space. > >We called my sister and she flew back on Friday from Miami. > >His WBC was 58K then it went down to 30 then 25 -it went down to 15 for 2 days - they even started weaning him from the respirator and he was doing well again. It seamed like he knew us and would try to squeeze our hands. They started giving him Lasix to remove some of the water. We thought he'd pull out. We wanted so much to just bring him home - even if we had to get Hospice or some other kind of help. > >But then it started going back up again (20 then 30) a CAT scan showed his bowel and colon were completely inflamed and started to become ischemic. His stomach was really hard and distended and he seemed to wince when we touched it. He also had constant diarrhea. They said normally they would have done a colostomy but Dad was in no shape to survive the surgery. > >They talked us into a DNR - but we would wait to see what happened after that. > >They would give him the antibiotics but they had to stop the tube feedings and switched to something else (TNP? - which has protein and nutrients but it goes in IV not through the feeding tube). They gave him some morphine to make him comfortable but of course that lowers BP so they had to give him Levaphed and fluids to keep the pressure up. He gained about 30 pounds in fluids in the last few days. > >He pretty much stayed the same over the weekend. My sister kept trying to convince us we couldn't leave him like that. She wanted to remove the respirator. The doc said he was concerned that the low BP might have lead to insufficient oxygen to the brain and combined with the parkinsons/LB/dementia that Dad might not ever really be the same - even if they could clear the infections. This may be true since now when Dad opened his eyes he seemed to stare beyond us and not really look AT us. > >So we had all the family come in and on Tuesday - with me and my mom - my sister - her kids (mine are too young for that) - my dad's brother and his other brother's son (that brother is 90 and ailing a bit himself) - we decided to remove the respirator the next morning. > >However - when we came in - the nurse told us that his BP was up in the 90's and they had been weaning him from the respirator over night - so the Doc felt that dad would live w/o the respirator. > >I thought maybe we should wait and let them continue the weaning process but my sister didn't want him lingering like that so they removed it then. When we came back in and sure enough Dad was breathing on his own. > >We were all relieved - he would go in his own time - or maybe he would come back to us. Then all of a sudden I saw the color leave his face - I could almost SEE the life leave his body. He breathing became slower and shallow and then he was gone ! We couldn't believe it happened that fast. Within 15 min of removing the respirator he was gone. > >This is the part I can't get passed. I later found out my sister had them increase the morphine - supposedly to make him more comfortable - but really just to hurry things along. She says she didn't want him lingering - but basically it was just so she could go home and back to their lives. > >Sometime I feel like we killed our Dad ! I should have stopped her - but I didn't know until it was too late - but I saw her talking to the nurse (and she's and ICU nurse herself) so I should have went over to see but I was bringing my kids in to see Dad for a while (at least now without the tubes he didn't look so bad - and gaining the 30 pounds made his face look better too !). (My son is >5 and missed Grampa being home terribly since he lived with us). > >Now I feel like we let him down and didn't give him a chance to recover or at least to come home for a while. > >The only thing that helps is that my daughter - who is only 3 said to me - " don't cry mommie - grampa's happy now " and I said to her who told you that - she said " grampa told me - he gave me a kiss and said goodby and that he's happy now ! " >I nearly passed out ! I know it sounds like a lot for a 3yo to say but she's been talking in full sentences since last summer and she's been dragged to the hospital everyday for the last 3 months so she understands all that. I'm sure she doesn't understand dying but she knows grampa isn't coming home. So I take some comfort in her words - where-ever she got them from. > >I hope Dad is in a better place and that he forgives us for putting him >in the rehab place (it was only supposed to be for 21 days !)... I feel like >I let him down. But today with Reagan dying from Alz/pneumonia I said to >my husband - one of the most powerful men in the world and no-one could >help him either ! Its so sad ! > > > >Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 My sympathys to you. I will pray you get strength in this difficult time of your life. Go in the strength you have and God will be with you. M > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: My Dad is gone ! >Date: Sun, 6 Jun 2004 23:50:55 -0400 (EDT) >MIME-Version: 1.0 >X-Sender: donna@... >Received: from n18.grp.scd.yahoo.com ([66.218.66.73]) by >mc8-f16.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Sun, 6 Jun 2004 >20:52:48 -0700 >Received: from [66.218.66.30] by n18.grp.scd.yahoo.com with NNFMP; 07 Jun >2004 03:51:51 -0000 >Received: (qmail 76138 invoked from network); 7 Jun 2004 03:50:28 -0000 >Received: from unknown (66.218.66.166) by m24.grp.scd.yahoo.com with QMQP; >7 Jun 2004 03:50:28 -0000 >Received: from unknown (HELO stone.congenomics.com) (65.160.254.44) by >mta5.grp.scd.yahoo.com with SMTP; 7 Jun 2004 03:50:28 -0000 >Received: from stone.congenomics.com (localhost [127.0.0.1])by >stone.congenomics.com (SGI-8.12.5/8.12.5) with ESMTP id i573ou5r033698for ><LBDcaregivers >; Sun, 6 Jun 2004 23:50:56 -0400 (EDT) >Received: (from donna@localhost)by stone.congenomics.com >(SGI-8.12.5/8.12.5/Submit) id i573otXg033700for >LBDcaregivers ; Sun, 6 Jun 2004 23:50:55 -0400 (EDT) >X-Message-Info: JGTYoYF78jEWPc5CcRxSV/qUy/rPkep0 >X-eGroups-Return: >sentto-2141318-30596-1086580230-cat86443=hotmail.com@... >X-Apparently-To: LBDcaregivers >Message-Id: >In-Reply-To: <c9j8og+imnaeGroups> from " jaektaylor " at Jun 2, 4 >00:58:56 am >X-Mailer: ELM [version 2.4 PL25 ME8b] >X-eGroups-Remote-IP: 65.160.254.44 >X-eGroups- >X-Yahoo-Profile: donnanjnew >Mailing-List: list LBDcaregivers ; contact >LBDcaregivers-owner >Delivered-To: mailing list LBDcaregivers >Precedence: bulk >List-Unsubscribe: <mailto:LBDcaregivers-unsubscribe > >Return-Path: >sentto-2141318-30596-1086580230-cat86443=hotmail.com@... >X-OriginalArrivalTime: 07 Jun 2004 03:52:48.0265 (UTC) >FILETIME=[E5F29790:01C44C42] > > > >I'm sorry I haven't been able to update everyone sooner - its just >too hard to write about. > >But my Dad passed on April 14... > >I'll copy stuff from the journal I wrote for those interested in >the details - below. > >This is so awful and I pray for all of you who will be taking this >journey ! Those of us that have know how difficult is is ! > >All I can say is keep your LO out of the hosp/rehab/AL if at all possible! > >HUGS > >donna >cg to Dad > >===================================== > >Dad had been back and forth between rehab and the hospital since Jan 31 >when we had to call 911 when he collapsed at home and we couldn't budge him >or get him to take any pills etc. > >Then we got a call that Dad was being moved to hosptial from rehab again on >March 31. > >Multiple infections ! Pneumonia, UTI,c.Diff, Merced infection of the PIC >line they put in (which Care-1 never took care of). The bed sore on his >butt was infected (of course the fact that they never kept it clean). > >All this became sepsis ! The ID guy said he never saw so many different >infections in one person. They told us to call the dept of Health and >Senior services and report Care-1. So I did and they will supposedly >investigate. > >However his BP kept dropping. On April 1 it must have dropped very low and >his heart rate went up over 200. The hospital called us and asked about >life support so we had him put on a respirator. It was all so sudden. My >mom was there we didn't know what to do - so we said do what-ever it takes. > >They started pumping IV fluids through him at the rate of 500ml per hour. >He started getting puffy as fluids were leaking out of the veins and into >the interstitial space. > >We called my sister and she flew back on Friday from Miami. > >His WBC was 58K then it went down to 30 then 25 -it went down to 15 for 2 >days - they even started weaning him from the respirator and he was doing >well again. It seamed like he knew us and would try to squeeze our hands. >They started giving him Lasix to remove some of the water. We thought he'd >pull out. We wanted so much to just bring him home - even if we had to get >Hospice or some other kind of help. > >But then it started going back up again (20 then 30) a CAT scan showed his >bowel and colon were completely inflamed and started to become ischemic. >His stomach was really hard and distended and he seemed to wince when we >touched it. He also had constant diarrhea. They said normally they would >have done a colostomy but Dad was in no shape to survive the surgery. > >They talked us into a DNR - but we would wait to see what happened after >that. > >They would give him the antibiotics but they had to stop the tube feedings >and switched to something else (TNP? - which has protein and nutrients but >it goes in IV not through the feeding tube). They gave him some morphine >to make him comfortable but of course that lowers BP so they had to give >him Levaphed and fluids to keep the pressure up. He gained about 30 pounds >in fluids in the last few days. > >He pretty much stayed the same over the weekend. My sister kept trying to >convince us we couldn't leave him like that. She wanted to remove the >respirator. The doc said he was concerned that the low BP might have lead >to insufficient oxygen to the brain and combined with the >parkinsons/LB/dementia that Dad might not ever really be the same - even if >they could clear the infections. This may be true since now when Dad opened >his eyes he seemed to stare beyond us and not really look AT us. > >So we had all the family come in and on Tuesday - with me and my mom - my >sister - her kids (mine are too young for that) - my dad's brother and his >other brother's son (that brother is 90 and ailing a bit himself) - we >decided to remove the respirator the next morning. > >However - when we came in - the nurse told us that his BP was up in the >90's and they had been weaning him from the respirator over night - so the >Doc felt that dad would live w/o the respirator. > >I thought maybe we should wait and let them continue the weaning process >but my sister didn't want him lingering like that so they removed it then. >When we came back in and sure enough Dad was breathing on his own. > >We were all relieved - he would go in his own time - or maybe he would come >back to us. Then all of a sudden I saw the color leave his face - I could >almost SEE the life leave his body. He breathing became slower and shallow >and then he was gone ! We couldn't believe it happened that fast. Within >15 min of removing the respirator he was gone. > >This is the part I can't get passed. I later found out my sister had them >increase the morphine - supposedly to make him more comfortable - but >really just to hurry things along. She says she didn't want him lingering - >but basically it was just so she could go home and back to their lives. > >Sometime I feel like we killed our Dad ! I should have stopped her - but I >didn't know until it was too late - but I saw her talking to the nurse (and >she's and ICU nurse herself) so I should have went over to see but I was >bringing my kids in to see Dad for a while (at least now without the tubes >he didn't look so bad - and gaining the 30 pounds made his face look better >too !). (My son is >5 and missed Grampa being home terribly since he lived with us). > >Now I feel like we let him down and didn't give him a chance to recover or >at least to come home for a while. > >The only thing that helps is that my daughter - who is only 3 said to me - > " don't cry mommie - grampa's happy now " and I said to her who told you that >- she said " grampa told me - he gave me a kiss and said goodby and that >he's happy now ! " >I nearly passed out ! I know it sounds like a lot for a 3yo to say but >she's been talking in full sentences since last summer and she's been >dragged to the hospital everyday for the last 3 months so she understands >all that. I'm sure she doesn't understand dying but she knows grampa isn't >coming home. So I take some comfort in her words - where-ever she got them >from. > >I hope Dad is in a better place and that he forgives us for putting him >in the rehab place (it was only supposed to be for 21 days !)... I feel >like >I let him down. But today with Reagan dying from Alz/pneumonia I said to >my husband - one of the most powerful men in the world and no-one could >help him either ! Its so sad ! _________________________________________________________________ Check out the coupons and bargains on MSN Offers! http://youroffers.msn.com Quote Link to comment Share on other sites More sharing options...
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