Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 We moved Ray from the hospital to the Sunrise Nursing Home yesterday. We had a few rough spots but overall things went very well all day and he settled in well and had a good night. It was difficult but not as difficult as it would have been if he had fought it. I am not sure he really understands what has happened. I was really worried because they insisted we had to transport him in a transport service but I was able to ride. The guy's 2 way radio was blaring away and the vehicle was an all metal suburban. Ray was strapped into a wheel chair in back of the front seat and everytime we went over a bump or anything, all the metal parts in the back ratttled. Once we got into Oswego where the nursing home is, the driver got mixed up and on the wrong street so we had a little trouble finding the place. But Ray was very calm and rode well the whole way. When i get an eval from the hospital tho, I will mention that terrible van. The nursing home is a 120 bed facility all on one floor in a residential area so it is pleasant. Once he gets acclimated and all the evaluations done, we will be able to go into the courtyard and walk. They have a bed alarm and a chair alarm all hooked up for him. The staff was doing a bit of showboating themselves yesterday because the State people were there doing one of the routine checks. But everyone seems friendly and competant. Luckily, the doctor was there and we met him. His specialty is Geriatric Dementias so he seems to be very Lewy Body savvy and he works with several nursing homes in the area. He believes in less meds than more where possible and told me that the state objects to anti-psychotic drugs being used for dementia patients. The gal that is head of nursing is a friend of my sister. So that gives us a personal touch point and she worked with us yesterday getting Ray admitted. The only objection I had was that they did not have meds from the hospital and had to wait to get meds from a group called Omnicare --their pharmacy. Ray's meds never got there until 11 pm last night. I pulled all the chains I could but to no avail. We just had to wait. I knew he could go over the edge very easily without them and it does seem to mess him up. I had all of his meds in the car, but they would not allow that, of course. He went into a small panic attack just once but came our of it quickly and easily for some reason. I stayed with him until he had gone to sleep and just hoped he would stay that way. My daughter has called this morning and he slept all night. God is good--sometimes. I am going back down and taking a TV and some other stuff this morning. I am about 45 minutes away from there so I had better get moving. It was the hardest thing I have ever done and still it was much easier because he took it so well. I know there will be rough days ahead. Sometime I will have to write down the story of how my daughter's prayers got us to this place. Thanks to all for the support and comfort. Leona Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. There's a magical tie to the land of our home, which the heart cannot break, though the footsteps may roam. Eliza Cook Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Leona - Thanks for the update. It sounds, so far, that you've found a great place. As you know, you'll still be his advocate - your job doesn't end. It's great that the doctor sounds to be Lewy-savvy. My mother thought that her stay in the nursing home was actually a stay in a rehab facilitiy - which it was when she started there after her hospital stay. My white lie was not letting her know that it was in fact a nursing home - it provided her hope during her stay there. Keep us posted! Take care of yourself too. > > > We moved Ray from the hospital to the Sunrise Nursing Home yesterday. We > had a few rough spots but overall things went very well all day and he > settled in well and had a good night. It was difficult but not as difficult > as it would have been if he had fought it. I am not sure he really > understands what has happened. > > I was really worried because they insisted we had to transport him in a > transport service but I was able to ride. The guy's 2 way radio was blaring > away and the vehicle was an all metal suburban. Ray was strapped into a > wheel chair in back of the front seat and everytime we went over a bump or > anything, all the metal parts in the back ratttled. Once we got into Oswego > where the nursing home is, the driver got mixed up and on the wrong street > so we had a little trouble finding the place. But Ray was very calm and rode > well the whole way. When i get an eval from the hospital tho, I will mention > that terrible van. > > The nursing home is a 120 bed facility all on one floor in a residential > area so it is pleasant. Once he gets acclimated and all the evaluations > done, we will be able to go into the courtyard and walk. They have a bed > alarm and a chair alarm all hooked up for him. The staff was doing a bit of > showboating themselves yesterday because the State people were there doing > one of the routine checks. But everyone seems friendly and competant. > Luckily, the doctor was there and we met him. His specialty is Geriatric > Dementias so he seems to be very Lewy Body savvy and he works with several > nursing homes in the area. He believes in less meds than more where possible > and told me that the state objects to anti-psychotic drugs being used for > dementia patients. The gal that is head of nursing is a friend of my sister. > So that gives us a personal touch point and she worked with us yesterday > getting Ray admitted. > > The only objection I had was that they did not have meds from the hospital > and had to wait to get meds from a group called Omnicare --their pharmacy. > Ray's meds never got there until 11 pm last night. I pulled all the chains > I could but to no avail. We just had to wait. I knew he could go over the > edge very easily without them and it does seem to mess him up. I had all of > his meds in the car, but they would not allow that, of course. He went into > a small panic attack just once but came our of it quickly and easily for > some reason. I stayed with him until he had gone to sleep and just hoped he > would stay that way. My daughter has called this morning and he slept all > night. God is good--sometimes. I am going back down and taking a TV and some > other stuff this morning. I am about 45 minutes away from there so I had > better get moving. > > It was the hardest thing I have ever done and still it was much easier > because he took it so well. I know there will be rough days ahead. Sometime > I will have to write down the story of how my daughter's prayers got us to > this place. Thanks to all for the support and comfort. Leona > > > Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's > Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill > slide no matter what drugs we try. > > > There's a magical tie to the land of our home, which the heart cannot break, > though the footsteps may roam. Eliza Cook > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 It does sound like a very tough day for you, but maybe easier on him than on you. I hope that it all goes well, there are bound to be rough spots but with your involvement you can even minimize those I'm sure. My best to your family, Leona . His, Sherry www.owly.net ----- Original Message ----- > We moved Ray from the hospital to the Sunrise Nursing Home yesterday. We > had a few rough spots but overall things went very well all day and he > settled in well and had a good night. It was difficult but not as > difficult > as it would have been if he had fought it. I am not sure he really > understands what has happened. > > I was really worried because they insisted we had to transport him in a > transport service but I was able to ride. The guy's 2 way radio was > blaring > away and the vehicle was an all metal suburban. Ray was strapped into a > wheel chair in back of the front seat and everytime we went over a bump or > anything, all the metal parts in the back ratttled. Once we got into > Oswego > where the nursing home is, the driver got mixed up and on the wrong street > so we had a little trouble finding the place. But Ray was very calm and > rode > well the whole way. When i get an eval from the hospital tho, I will > mention > that terrible van. > > The nursing home is a 120 bed facility all on one floor in a residential > area so it is pleasant. Once he gets acclimated and all the evaluations > done, we will be able to go into the courtyard and walk. They have a bed > alarm and a chair alarm all hooked up for him. The staff was doing a bit > of > showboating themselves yesterday because the State people were there doing > one of the routine checks. But everyone seems friendly and competant. > Luckily, the doctor was there and we met him. His specialty is Geriatric > Dementias so he seems to be very Lewy Body savvy and he works with several > nursing homes in the area. He believes in less meds than more where > possible > and told me that the state objects to anti-psychotic drugs being used for > dementia patients. The gal that is head of nursing is a friend of my > sister. > So that gives us a personal touch point and she worked with us yesterday > getting Ray admitted. > > The only objection I had was that they did not have meds from the hospital > and had to wait to get meds from a group called Omnicare --their pharmacy. > Ray's meds never got there until 11 pm last night. I pulled all the > chains > I could but to no avail. We just had to wait. I knew he could go over the > edge very easily without them and it does seem to mess him up. I had all > of > his meds in the car, but they would not allow that, of course. He went > into > a small panic attack just once but came our of it quickly and easily for > some reason. I stayed with him until he had gone to sleep and just hoped > he > would stay that way. My daughter has called this morning and he slept all > night. God is good--sometimes. I am going back down and taking a TV and > some > other stuff this morning. I am about 45 minutes away from there so I had > better get moving. > > It was the hardest thing I have ever done and still it was much easier > because he took it so well. I know there will be rough days ahead. > Sometime > I will have to write down the story of how my daughter's prayers got us to > this place. Thanks to all for the support and comfort. Leona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 I'm glad that it went well, Leona. I can only imagine how hard it must have been for you. (((HUGS))) Gladys -- Update on Ray We moved Ray from the hospital to the Sunrise Nursing Home yesterday. We had a few rough spots but overall things went very well all day and he settled in well and had a good night. It was difficult but not as difficult as it would have been if he had fought it. I am not sure he really understands what has happened. I was really worried because they insisted we had to transport him in a transport service but I was able to ride. The guy's 2 way radio was blaring away and the vehicle was an all metal suburban. Ray was strapped into a wheel chair in back of the front seat and everytime we went over a bump or anything, all the metal parts in the back ratttled. Once we got into Oswego where the nursing home is, the driver got mixed up and on the wrong street so we had a little trouble finding the place. But Ray was very calm and rode well the whole way. When i get an eval from the hospital tho, I will mention that terrible van. The nursing home is a 120 bed facility all on one floor in a residential area so it is pleasant. Once he gets acclimated and all the evaluations done, we will be able to go into the courtyard and walk. They have a bed alarm and a chair alarm all hooked up for him. The staff was doing a bit of showboating themselves yesterday because the State people were there doing one of the routine checks. But everyone seems friendly and competant. Luckily, the doctor was there and we met him. His specialty is Geriatric Dementias so he seems to be very Lewy Body savvy and he works with several nursing homes in the area. He believes in less meds than more where possible and told me that the state objects to anti-psychotic drugs being used for dementia patients. The gal that is head of nursing is a friend of my sister. So that gives us a personal touch point and she worked with us yesterday getting Ray admitted. The only objection I had was that they did not have meds from the hospital and had to wait to get meds from a group called Omnicare --their pharmacy. Ray's meds never got there until 11 pm last night. I pulled all the chains I could but to no avail. We just had to wait. I knew he could go over the edge very easily without them and it does seem to mess him up. I had all of his meds in the car, but they would not allow that, of course. He went into a small panic attack just once but came our of it quickly and easily for some reason. I stayed with him until he had gone to sleep and just hoped he would stay that way. My daughter has called this morning and he slept all night. God is good--sometimes. I am going back down and taking a TV and some other stuff this morning. I am about 45 minutes away from there so I had better get moving. It was the hardest thing I have ever done and still it was much easier because he took it so well. I know there will be rough days ahead. Sometime I will have to write down the story of how my daughter's prayers got us to this place. Thanks to all for the support and comfort. Leona Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. There's a magical tie to the land of our home, which the heart cannot break, though the footsteps may roam. Eliza Cook ------------------------------------ Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2008 Report Share Posted May 11, 2008 Leona it is so wonderful that you and the kids are seeing Ray so often, and being so involved! I know that the NH staff must appreciate that, and they also know that their care of him is under his family's scrutiny - that can only be a good thing! It's also so great that you're able to take him for outings...it sounds like all is going as well as can be. Those care team meetings are a great source of information for all concerned, and of better understanding. Thank you for the update and know that you and your family are in my prayers! His, Sherry www.owly.net ----- Original Message ----- > Ray has been in the Nursing Home a week today. The kids and I have > arranged > to have two visits each day as much as we can so that he doesn't feel like > a > dropped cat. He seems to be OK. I think they are giving him more seroquel > than he used to get. He is very mellow, sleepy and quiet. Doesn't seem to > be > upset about being there which surprised me. Pete took him out for an ice > cream Sunday on Tues. I took him to the lovely farm market Thurs and we > brought him out today for several hours to go to a family place and spend > time with our baby granddaughters. All three went very well. He has had a > few panic attacks but i think the extra seroquel has stemmed those > somewhat. > He has had a couple nights when he has not settled down. > > The CNAs and nurses are friendly and helpful. We have found him very wet > a > few times and I don't think he can tell them anymore when he has to go--or > won't . He also does not tell them when he is wet. I am not yet certain > what > the dosages are of the drugs he is on. I know he is sleepy an awful lot. > One worry is his bowels. I am trying to note concerns such this as we have > a > " Care Team Meeting " next Thursday afternoon. > > The house is very empty and " cold " but I am sleeping well (thank God)and > it > seems so good. I have lots to do but I don't seem to get focused enough to > get much done. After this next week, I will probably cut back on my trips > to visit him to every other day. I am going to try to go to be there with > his therapy since he seems to do better with one of us there. I am finding > lots of extra things to do that I enjoy and feel kind of guilty about it > but > know that I can't depend on my kids to entertain me and I need to have > things to do outside the home. I have a good friend who lets me cry on > her > shoulder a lot and my kids are in touch with me every day. My sisters and > brother are good support and i have other friends I can call on too. So I > am > very lucky and while it is not what we dreamed of for retirement, I guess > it > is try that God does not give you more than you can handle. > > Thank you all for your messages of support and comfort If I do not always > respond to other's need for support and their questions, it is that I > sometimes feel inadequate to try to answer. There are others much more > adept > and knowlegeable than I to answer questions. Thanks again, Leona > > Leona: Caregiver for husband Ray, age 67, 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, 45 minutes from home. So far, so good! Hardest thing I > have ever done in my life, however. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2008 Report Share Posted May 11, 2008 We brought Ray out for Mother's Day with us. Most of the time, he was just very sleepy and uncommunicative. He did not eat much at all. I really think he is over medicated. He woke up for about an hour or so and went outside with us. My daughter and I managed to get him on the " sissy seat " of the ATV and took him on the trips to take the loads of lawn cleaning back to the woods. He also sat in the barn and watched my son putting the lawn mower on the garden tractor. One real concern I have is something that has developed since he has come out of the hospital. (1 week ago on Friday May 2nd). His head is " hanging " down to his chest almost continually and it is nearly impossible to get him to hold it up. Even when I got him into bed tonight at the nursing home, he did not lay his head back on his pillow. I remember seeing footage of Pope toward the end of his life and he could not hold his head up. It may be the Parkinsonian symptoms that go along with LBD in Ray's case. But if his head stays like this, I don't know how we will feed him. They sent pills out with him today and I noted that his dose of Sinemet is the same as he has been getting since last summer. I am glad I have the care meeting this Thursday at the home but has anybody had this problem and what do you do about it? By the way--we had a nice Mother's day breakfast with all my kids and grandkids. I hope all the rest of you had an equally good Mother's Day. As always I remember all of you and your LOs in my prayers. Leona Leona: Caregiver for husband Ray, age 67, 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, 45 minutes from home. So far, so good! Hardest thing I have ever done in my life, however. There's a magical tie to the land of our home, which the heart cannot break, though the footsteps may roam. Eliza Cook Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2008 Report Share Posted May 12, 2008 Hopefully others will chime in - since I'm responding about a med that my mother never had - sinemet. I recall posts that eventually the med loses its benefit w/ LBD and there comes a time when it needs to be gradually removed. Maybe this symptom of his head hanging is the sign that it's time... Again, hopefully others w/ exp. w/ this med will chime in. But my mom when over medicated had the Lewy Lean - although this isn't a lean, but a hang... it makes me wonder. What other meds is Ray on currently? > > We brought Ray out for Mother's Day with us. Most of the time, he was just > very sleepy and uncommunicative. He did not eat much at all. I really > think he is over medicated. He woke up for about an hour or so and went > outside with us. My daughter and I managed to get him on the " sissy seat " of > the ATV and took him on the trips to take the loads of lawn cleaning back to > the woods. He also sat in the barn and watched my son putting the lawn > mower on the garden tractor. > > One real concern I have is something that has developed since he has come > out of the hospital. (1 week ago on Friday May 2nd). His head is " hanging " > down to his chest almost continually and it is nearly impossible to get him > to hold it up. Even when I got him into bed tonight at the nursing home, he > did not lay his head back on his pillow. I remember seeing footage of Pope > toward the end of his life and he could not hold his head up. It > may be the Parkinsonian symptoms that go along with LBD in Ray's case. But > if his head stays like this, I don't know how we will feed him. They sent > pills out with him today and I noted that his dose of Sinemet is the same as > he has been getting since last summer. I am glad I have the care meeting > this Thursday at the home but has anybody had this problem and what do you > do about it? > > By the way--we had a nice Mother's day breakfast with all my kids and > grandkids. I hope all the rest of you had an equally good Mother's Day. As > always I remember all of you and your LOs in my prayers. Leona > > Leona: Caregiver for husband Ray, age 67, 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, 45 minutes from home. So far, so good! Hardest thing I > have ever done in my life, however. > > There's a magical tie to the land of our home, which the heart cannot > break, though the footsteps may roam. Eliza Cook > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2008 Report Share Posted May 12, 2008 Leona, I would agree with you. It really does sound like over medication. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Update on Ray We brought Ray out for Mother's Day with us. Most of the time, he was just very sleepy and uncommunicative. He did not eat much at all. I really think he is over medicated. He woke up for about an hour or so and went outside with us. My daughter and I managed to get him on the " sissy seat " of the ATV and took him on the trips to take the loads of lawn cleaning back to the woods. He also sat in the barn and watched my son putting the lawn mower on the garden tractor. One real concern I have is something that has developed since he has come out of the hospital. (1 week ago on Friday May 2nd). His head is " hanging " down to his chest almost continually and it is nearly impossible to get him to hold it up. Even when I got him into bed tonight at the nursing home, he did not lay his head back on his pillow. I remember seeing footage of Pope toward the end of his life and he could not hold his head up. It may be the Parkinsonian symptoms that go along with LBD in Ray's case. But if his head stays like this, I don't know how we will feed him. They sent pills out with him today and I noted that his dose of Sinemet is the same as he has been getting since last summer. I am glad I have the care meeting this Thursday at the home but has anybody had this problem and what do you do about it? By the way--we had a nice Mother's day breakfast with all my kids and grandkids. I hope all the rest of you had an equally good Mother's Day. As always I remember all of you and your LOs in my prayers. Leona Leona: Caregiver for husband Ray, age 67, 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, 45 minutes from home. So far, so good! Hardest thing I have ever done in my life, however. There's a magical tie to the land of our home, which the heart cannot break, though the footsteps may roam. Eliza Cook Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2008 Report Share Posted May 12, 2008 I don't think it is so much that Sinemet loses its benefit but that as the dementia progresses, the Sinemet can cause more confusion, hallucinations, inability to cope mentally. It often needs to be reduced, if not eliminated all together. If there have been no other med changes for Ray that could be causing this head hanging and sleepiness I would try reducing the Sinemet, but also test for a UTI. Gibsons BC Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > > > We brought Ray out for Mother's Day with us. Most of the time, he > was just > > very sleepy and uncommunicative. He did not eat much at all. I > really > > think he is over medicated. He woke up for about an hour or so and > went > > outside with us. My daughter and I managed to get him on the " sissy > seat " of > > the ATV and took him on the trips to take the loads of lawn > cleaning back to > > the woods. He also sat in the barn and watched my son putting the > lawn > > mower on the garden tractor. > > > > One real concern I have is something that has developed since he > has come > > out of the hospital. (1 week ago on Friday May 2nd). His head > is " hanging " > > down to his chest almost continually and it is nearly impossible to > get him > > to hold it up. Even when I got him into bed tonight at the nursing > home, he > > did not lay his head back on his pillow. I remember seeing footage > of Pope > > toward the end of his life and he could not hold his head > up. It > > may be the Parkinsonian symptoms that go along with LBD in Ray's > case. But > > if his head stays like this, I don't know how we will feed him. > They sent > > pills out with him today and I noted that his dose of Sinemet is > the same as > > he has been getting since last summer. I am glad I have the care > meeting > > this Thursday at the home but has anybody had this problem and what > do you > > do about it? > > > > By the way--we had a nice Mother's day breakfast with all my kids > and > > grandkids. I hope all the rest of you had an equally good Mother's > Day. As > > always I remember all of you and your LOs in my prayers. Leona > > > > Leona: Caregiver for husband Ray, age 67, 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, 45 minutes from home. So far, so good! Hardest > thing I > > have ever done in my life, however. > > > > There's a magical tie to the land of our home, which the heart > cannot > > break, though the footsteps may roam. Eliza Cook > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Leona, my darling Don is sleeping more now too. It isn't sudden or I would suspect something else wrong, but has been very gradual, and now he sleeps some in the mornings, and a lot in the afternoons. At night he'll sleep a lot during movies, and awakens a bit only to go back to sleep. That goes on all evening. He has a very bad time rising from his recliner. I am thinking of getting him a Lift chair. It really is good for him to use his muscles to rise, so for now I leave him alone. I do have to remind him to put his hands on the arms of his chair. Did I mention that he couldn't find the toilet last night. He asked me what door to take. I answered matter of factly as I would a visitor. It did cause a little stab in my heart. I think Don has been very slow in progressing with this disease, considering how long he has displayed symptoms. Love a lot, and may it all go as easy as possible with Ray, Imogene In a message dated 5/14/2008 8:29:17 AM Central Daylight Time, lchereshnoski@... writes: Thanks all of you for the advice on my first care meeting. Just a little nervous about it, that's all. I hope the staff doctor will be there but I doubt it. Ray's sleepiness has only been since he came out of the hospital to the nursing home on higher doses of seroquel than before. (Still not extremely high but...) 12.5 m mid morning, 25 at 2 pm and 50 at bedtime. Doesn't always work for him but he is sleepy a lot. Sometimes he will not wake up to eat. His head hanging has been worse since his entry into the nursing home. Maybe that too is a response to the seroquel sleepiness. Thanks all for your comments. Leona Leona: Caregiver for husband Ray, age 67, 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, 45 minutes from home. So far, so good! Hardest thing I have ever done in my life, however. **************Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) Quote Link to comment Share on other sites More sharing options...
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