Guest guest Posted June 22, 2006 Report Posted June 22, 2006 My husband has been in the NH since Feb., and has suffered almost continuously from UTIs. He doesn't always run a fever, but invariably, he gets out of control, gets physically and verbally abusive, cusses, hits, kicks, etc. A couple of weeks ago he had a bad spell, and they finally treated with an antibiotic shot followed by more medication. It seemed to clear it up. This past Sunday was the first I knew he was getting combative again, but they told me later it started Friday, hitting, and combative with staff. On Sunday, one of the LPNs was having a bad time with him, but she has a tendency to be very brusque, ordering the patients around, etc., and generally is met with resistance. My granddaughter observed this behavior and made some remarks about the treatment. The next day, I was called into the NH for a conference, and in speaking with the social worker, DON, ADON, and the manager of the facility, we agreed that even tho I didn't want to use Seroquel, that he would be give a low dose at night to possibly stop some of the aggressive behavior and help him sleep, as he seems to have days and nights mixed up. Anyway, after three doses of the Seroquel, he became even more combative, until yesterday morning, they called me that he was uncontrollable, that they couldn't get near him for medicine or food, and he was possibly going to injure the staff or himself. They suggested that he go to the senior diagnostic center for evaluation of his meds, to which I reluctantly agreed. Somehow, between the time I talked with them and his entrance into the hospital, they got close enough to him to get another dose of Seroquel in him and get him in the wheelchair to be transported. I indicated to the admitting nurse that I believed he had LBD, although he has not been formally diagnosed, and I expressed my concerns about some of the meds they might be trying on him (neuroleptics). She kind of gave me the impression that she didn't think it was LBD and that many of the symptoms I was describing were AD too. I expressed concerns about his lack of sleep and said I had read from the posts about Trazadone and Melatonin as possible sleep aids. Today, when I went back, lo and behold the psychiatrist was there and available to talk. Seemed a little surprised about my knowing anything about LBD and wanted to know why I suspected it. I told him, and he agrees that he thinks it is, and for the first time, I feel that this doctor is really trying to help as opposed to the others who act like they think you don't know what you are talking about. He said that with LBD, the less medicine and the lowest doses are best. They gave him Trazadone last night for sleep; think they had to give him two doses, and they let him sleep in recliner at nurses' station, but it sounded as if he slept. Dr. is going to start him again on Namenda, but he says it should be kept at a low dose (5 mg morning and night). He said the Aricept dose for LBD should be no more than 10 mg per day. He is also going to use Depakote sprinkles in his food, which will take the edge off the irritability and anger, and the patient doesn't know they are getting it in their food. They also found he has another UTI, hence the bad behavior, and I should have followed my instinct to mention that Monday, but so often they act like they think I'm trying to cause problems. In his last care conference, they had said they would keep him on a low dose of antibiotic to keep UTIs from returning, but they did not carry thru with that, and they said the urologist said he would not prescribe that. Anyway, while I was at the hospital, the NH called and told me they would not take him back because of his behavior. Fortunately I had talked to the social worker at the hospital and found they cannot do that; they have to take him back and then if they can find another place for him, they can transfer him. I told them that he has another UTI and reminded them that they agreed to do the preventive antibiotic and they had not. While I was still there, the marketing director called the social worker and told her that he could come back; I'm sure they didn't want to get into any problems with the state regulatory agencies. Anyway, I left there and went to talk to them, the NH director and social worker, and since it was a UTI probably causing the bad behavior, they will take him back. I also talked to the newer ADON, who appears to be very cognizant of the problems; she had never heard of LBD nor Capgras syndrome and was going to research it on the computer. So, we got things straightened out at this point. I think they kind of backtracked because they knew they could get into trouble for not following the care plan and could not refuse to take him back. I sensed a distinct coolness on the part of some of the staff, so it probably won't be a good situation, but I will be watching them closely to see that he is treated properly. I had told them many times that when he acted up, it was generally UTI or another physical problem. I also found out that his weight has dropped from 183 in mid-January to 160 yesterday. The NH had kept insisting that he weighed 173, and I knew better, as he was really getting thin thru hips, shoulders, and legs. I know this is long, and I hope you don't get bored reading it, but I believe that it is important for those of you who may encounter some of this to know about it and also about some of the regulations. I also wanted to share that a doctor was open to consideration of the LBD diagnosis and agreed fully that " less is better " regarding medications, which I had been trying to tell them all along. __________________________________________________ Quote
Guest guest Posted June 22, 2006 Report Posted June 22, 2006 June, Have you had access to the DVD that Carol had done in Florida? I think you can ask for it at the LBDA site, (after my name is the address) or if not let me know and I will get you a copy. It is done by MDs and will help you know you know what you are talking about. And for those Medical people who are so smart, (or think they are) you can get them a copy made. Let me know if you have problems getting it. Hope this helps. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Experiences Last Two Days My husband has been in the NH since Feb., and has suffered almost continuously from UTIs. He doesn't always run a fever, but invariably, he gets out of control, gets physically and verbally abusive, cusses, hits, kicks, etc. A couple of weeks ago he had a bad spell, and they finally treated with an antibiotic shot followed by more medication. It seemed to clear it up. This past Sunday was the first I knew he was getting combative again, but they told me later it started Friday, hitting, and combative with staff. On Sunday, one of the LPNs was having a bad time with him, but she has a tendency to be very brusque, ordering the patients around, etc., and generally is met with resistance. My granddaughter observed this behavior and made some remarks about the treatment. The next day, I was called into the NH for a conference, and in speaking with the social worker, DON, ADON, and the manager of the facility, we agreed that even tho I didn't want to use Seroquel, that he would be give a low dose at night to possibly stop some of the aggressive behavior and help him sleep, as he seems to have days and nights mixed up. Anyway, after three doses of the Seroquel, he became even more combative, until yesterday morning, they called me that he was uncontrollable, that they couldn't get near him for medicine or food, and he was possibly going to injure the staff or himself. They suggested that he go to the senior diagnostic center for evaluation of his meds, to which I reluctantly agreed. Somehow, between the time I talked with them and his entrance into the hospital, they got close enough to him to get another dose of Seroquel in him and get him in the wheelchair to be transported. I indicated to the admitting nurse that I believed he had LBD, although he has not been formally diagnosed, and I expressed my concerns about some of the meds they might be trying on him (neuroleptics). She kind of gave me the impression that she didn't think it was LBD and that many of the symptoms I was describing were AD too. I expressed concerns about his lack of sleep and said I had read from the posts about Trazadone and Melatonin as possible sleep aids. Today, when I went back, lo and behold the psychiatrist was there and available to talk. Seemed a little surprised about my knowing anything about LBD and wanted to know why I suspected it. I told him, and he agrees that he thinks it is, and for the first time, I feel that this doctor is really trying to help as opposed to the others who act like they think you don't know what you are talking about. He said that with LBD, the less medicine and the lowest doses are best. They gave him Trazadone last night for sleep; think they had to give him two doses, and they let him sleep in recliner at nurses' station, but it sounded as if he slept. Dr. is going to start him again on Namenda, but he says it should be kept at a low dose (5 mg morning and night). He said the Aricept dose for LBD should be no more than 10 mg per day. He is also going to use Depakote sprinkles in his food, which will take the edge off the irritability and anger, and the patient doesn't know they are getting it in their food. They also found he has another UTI, hence the bad behavior, and I should have followed my instinct to mention that Monday, but so often they act like they think I'm trying to cause problems. In his last care conference, they had said they would keep him on a low dose of antibiotic to keep UTIs from returning, but they did not carry thru with that, and they said the urologist said he would not prescribe that. Anyway, while I was at the hospital, the NH called and told me they would not take him back because of his behavior. Fortunately I had talked to the social worker at the hospital and found they cannot do that; they have to take him back and then if they can find another place for him, they can transfer him. I told them that he has another UTI and reminded them that they agreed to do the preventive antibiotic and they had not. While I was still there, the marketing director called the social worker and told her that he could come back; I'm sure they didn't want to get into any problems with the state regulatory agencies. Anyway, I left there and went to talk to them, the NH director and social worker, and since it was a UTI probably causing the bad behavior, they will take him back. I also talked to the newer ADON, who appears to be very cognizant of the problems; she had never heard of LBD nor Capgras syndrome and was going to research it on the computer. So, we got things straightened out at this point. I think they kind of backtracked because they knew they could get into trouble for not following the care plan and could not refuse to take him back. I sensed a distinct coolness on the part of some of the staff, so it probably won't be a good situation, but I will be watching them closely to see that he is treated properly. I had told them many times that when he acted up, it was generally UTI or another physical problem. I also found out that his weight has dropped from 183 in mid-January to 160 yesterday. The NH had kept insisting that he weighed 173, and I knew better, as he was really getting thin thru hips, shoulders, and legs. I know this is long, and I hope you don't get bored reading it, but I believe that it is important for those of you who may encounter some of this to know about it and also about some of the regulations. I also wanted to share that a doctor was open to consideration of the LBD diagnosis and agreed fully that " less is better " regarding medications, which I had been trying to tell them all along. __________________________________________________ Quote
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