Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 Hi Everyone, My husband Bob was transferred to a rehab center Wed. March 28th after a week in the hospital for a strep infection in his blood. He had a very tough two days at first, not sleeping at night, very restless and confused. Unable to feed himself for the two days. He is finally coming around a little now and able to feed himself Friday and today. He is so weak and has declined so that they are using a hoyer lift to transfer him from bed to wheelchair. Not even trying to get him up to walk or transfer with the walker, although they did do it that way in the hospital. Physical Therapy in hospital had him up and walking in the hall with the walker. This rehab center is not even trying to do that with him because he was so bad the first two days he was there. I am going in to help him eat his meal at noon each day and stay an hour or two to visit and explain about LBD to the staff. This is so hard to see how he has gone downhill the last week and a half. Keeping on keeping on. Pat M. Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2012 Report Share Posted April 29, 2012 Dear Pat, Enjoy having your sister in law around, even if only for a little while.... glad Bob is hanging in there... hope you continue to do the same while navigating through this nightmare. My thoughts are with you Helene (Mom 78, 12 years late stage LBD in NY) > > Hi All, > Well Bob is hanging in there at Rehab. Wednesday he had to have IV > fluids because he was not drinking enough by mouth. His BP dropped to > 74/52. They said it was dehydration.He perked up and has been a > little better since then. He is starting to choke and cough after > drinking. I met with the Speech Therapist who tried him on thickened > liquids. He still coughed some after drinking the thickened apple > juice she gave him. The Speech Therapist said thickening his drinks > would increase the likelihood of Bob getting dehydrated because they > are thickened and most people do not like to drink them that way. So > I said " No thanks. " to thickened liquids. I will not ever have a > feeding tube put in Bob if and when it comes to that. It would just > prolong the suffering of Lewy. > Bob's twin sister a is flying in today and I am picking her up > at the airport. She will stay with me a week. She wants to see her > twin brother one more time and help with his feeding and sit with him > to keep him from trying to take off his clothes and throwing > everything on the floor, which is what he does when he is alone in his > room. He kept on tearing off his bandage from the hip surgery. > Luckily now that the incision is healed enough the staples are out and > it looks good, so no more bandages. It will be quite a shock for his > twin sister when she sees how bad Bob is. She has not seen him since > last summer when he was still able to walk and talk a little on his > own. Bob needs two CNA's to transfer from the bed to a wheelchair and > only mumbles and rambles nonsense now. I do not foresee him getting > better to the point where I could transfer him myself alone as his > dementia is sooo bad now. He does not understand al ot of what the PT > asks him to do and will do just the opposite of what they want! > I am getting resigned to the fact that if he lives on like this I > will not be able, nor do I want to bring Bob home to care for any > longer. It is just too difficult and exhausting, not to mention > painfully emotional to be with him and see how he has declined to be > less intelligent than a one year old child now. For a man who has a > PhD in Education, who taught high school math and computers, and who > was a Baptist minister for 15 years, this is truly a devastating and > dreadful slow good bye..... So sad to watch it is really unbearable, > but I must bear it somehow as it is what it is. When the Medicare > Rehab time and money come to an end I will be placing Bob there in the > nursing home part and have applied for Title 19. I never wanted to do > this, but I can no longer stand to care for him at home or handle my > emotions. I vary from anger to sorrow to depression, and am really > mourning the loss of our life together and all our hopes and dreams > for the future are smashed forever. I will never understand why this > has to happen to such a good and kind man, God does not answer when I > ask him why? Maybe I will know when I get to heaven, but right now > this is hell on earth. > Pat M. > 58 Wife/caregiver of Bob 76, dx PD 2003, LBD 2009, now in Rehab Center > post second hip replacement surgery. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2012 Report Share Posted April 29, 2012 Dear Pat, Enjoy having your sister in law around, even if only for a little while.... glad Bob is hanging in there... hope you continue to do the same while navigating through this nightmare. My thoughts are with you Helene (Mom 78, 12 years late stage LBD in NY) > > Hi All, > Well Bob is hanging in there at Rehab. Wednesday he had to have IV > fluids because he was not drinking enough by mouth. His BP dropped to > 74/52. They said it was dehydration.He perked up and has been a > little better since then. He is starting to choke and cough after > drinking. I met with the Speech Therapist who tried him on thickened > liquids. He still coughed some after drinking the thickened apple > juice she gave him. The Speech Therapist said thickening his drinks > would increase the likelihood of Bob getting dehydrated because they > are thickened and most people do not like to drink them that way. So > I said " No thanks. " to thickened liquids. I will not ever have a > feeding tube put in Bob if and when it comes to that. It would just > prolong the suffering of Lewy. > Bob's twin sister a is flying in today and I am picking her up > at the airport. She will stay with me a week. She wants to see her > twin brother one more time and help with his feeding and sit with him > to keep him from trying to take off his clothes and throwing > everything on the floor, which is what he does when he is alone in his > room. He kept on tearing off his bandage from the hip surgery. > Luckily now that the incision is healed enough the staples are out and > it looks good, so no more bandages. It will be quite a shock for his > twin sister when she sees how bad Bob is. She has not seen him since > last summer when he was still able to walk and talk a little on his > own. Bob needs two CNA's to transfer from the bed to a wheelchair and > only mumbles and rambles nonsense now. I do not foresee him getting > better to the point where I could transfer him myself alone as his > dementia is sooo bad now. He does not understand al ot of what the PT > asks him to do and will do just the opposite of what they want! > I am getting resigned to the fact that if he lives on like this I > will not be able, nor do I want to bring Bob home to care for any > longer. It is just too difficult and exhausting, not to mention > painfully emotional to be with him and see how he has declined to be > less intelligent than a one year old child now. For a man who has a > PhD in Education, who taught high school math and computers, and who > was a Baptist minister for 15 years, this is truly a devastating and > dreadful slow good bye..... So sad to watch it is really unbearable, > but I must bear it somehow as it is what it is. When the Medicare > Rehab time and money come to an end I will be placing Bob there in the > nursing home part and have applied for Title 19. I never wanted to do > this, but I can no longer stand to care for him at home or handle my > emotions. I vary from anger to sorrow to depression, and am really > mourning the loss of our life together and all our hopes and dreams > for the future are smashed forever. I will never understand why this > has to happen to such a good and kind man, God does not answer when I > ask him why? Maybe I will know when I get to heaven, but right now > this is hell on earth. > Pat M. > 58 Wife/caregiver of Bob 76, dx PD 2003, LBD 2009, now in Rehab Center > post second hip replacement surgery. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2012 Report Share Posted April 29, 2012 Dear Pat, Enjoy having your sister in law around, even if only for a little while.... glad Bob is hanging in there... hope you continue to do the same while navigating through this nightmare. My thoughts are with you Helene (Mom 78, 12 years late stage LBD in NY) > > Hi All, > Well Bob is hanging in there at Rehab. Wednesday he had to have IV > fluids because he was not drinking enough by mouth. His BP dropped to > 74/52. They said it was dehydration.He perked up and has been a > little better since then. He is starting to choke and cough after > drinking. I met with the Speech Therapist who tried him on thickened > liquids. He still coughed some after drinking the thickened apple > juice she gave him. The Speech Therapist said thickening his drinks > would increase the likelihood of Bob getting dehydrated because they > are thickened and most people do not like to drink them that way. So > I said " No thanks. " to thickened liquids. I will not ever have a > feeding tube put in Bob if and when it comes to that. It would just > prolong the suffering of Lewy. > Bob's twin sister a is flying in today and I am picking her up > at the airport. She will stay with me a week. She wants to see her > twin brother one more time and help with his feeding and sit with him > to keep him from trying to take off his clothes and throwing > everything on the floor, which is what he does when he is alone in his > room. He kept on tearing off his bandage from the hip surgery. > Luckily now that the incision is healed enough the staples are out and > it looks good, so no more bandages. It will be quite a shock for his > twin sister when she sees how bad Bob is. She has not seen him since > last summer when he was still able to walk and talk a little on his > own. Bob needs two CNA's to transfer from the bed to a wheelchair and > only mumbles and rambles nonsense now. I do not foresee him getting > better to the point where I could transfer him myself alone as his > dementia is sooo bad now. He does not understand al ot of what the PT > asks him to do and will do just the opposite of what they want! > I am getting resigned to the fact that if he lives on like this I > will not be able, nor do I want to bring Bob home to care for any > longer. It is just too difficult and exhausting, not to mention > painfully emotional to be with him and see how he has declined to be > less intelligent than a one year old child now. For a man who has a > PhD in Education, who taught high school math and computers, and who > was a Baptist minister for 15 years, this is truly a devastating and > dreadful slow good bye..... So sad to watch it is really unbearable, > but I must bear it somehow as it is what it is. When the Medicare > Rehab time and money come to an end I will be placing Bob there in the > nursing home part and have applied for Title 19. I never wanted to do > this, but I can no longer stand to care for him at home or handle my > emotions. I vary from anger to sorrow to depression, and am really > mourning the loss of our life together and all our hopes and dreams > for the future are smashed forever. I will never understand why this > has to happen to such a good and kind man, God does not answer when I > ask him why? Maybe I will know when I get to heaven, but right now > this is hell on earth. > Pat M. > 58 Wife/caregiver of Bob 76, dx PD 2003, LBD 2009, now in Rehab Center > post second hip replacement surgery. > Quote Link to comment Share on other sites More sharing options...
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