Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 My husband Bob, had a very bad paranoid delusional reaction that got worse as they increased his Seroquel dose to try to help with the hallucinations. It was so bad that he had to be hospitalized in a locked psych ward for 3 weeks, and then went to rehab for 21 days. Now he has Seroquel listed as an allergy on his chart to make sure no one ever gives it to him again. YES Seroquel can increase anxiety and delusions and cause physical ailments in LBD patients. I would recommend stopping it and using Klonopin at bedtime instead. Please read the attached article about LBD treatment by Dr. Boeve of Mayo Clinic. Best Wishes, Pat M. > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel. Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon, Effexor and Sinimet. > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 Kate Knapp > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel. Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon, Effexor and Sinimet. > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 Barbara, Does your mom have a phone in her room? I remember my grandmother, years ago, calling everyone she knew trying to guilt them into taken her out of the nursing home or at least come for extended visits. She would call mom every few minutes. There is nothing wrong with limiting your mom's access to a phone. My mom doesn't have one because of what happened with her mom. We'll, she can't talk either so she never really asked for one. If your mom is using the nurses phone, give them instructions limiting her calls to one a day, made at a specific time. She probably has no concept of what this does to your dad and may not understand or remember the explanation. Where your mom is concerned, you are now stuck with the parental decisions. Kathy Kate Knapp > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel. Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon, Effexor and Sinimet. > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 Barb,  I would think up a " loving lie,' so she doesn't have to be so distressed. Is there something she would accept? He has a cold and doesn't want to give it to her? Or what ever she will accept.You know her and remind her you are taking his place? Maybe she won't want to hurt your feelings. There are things they will accept. Tell her he was there earlier, " don't you remember? "  And tell her that is what her sickness does, is not let her always remember. Or whatever you think might work. I found some things by accident that worked.  Hugs,  Donna R Re: [ LBDcaregivers ] anxiety Kate Knapp On Jan 7, 2012 12:06 PM, " Barbara " < barbara _ austen @ att .net> wrote: > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel . Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon , Effexor and Sinimet . > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 My Mum also had a phone and called people at all times. In the end we had to have the phone disconnected. We told her there was a problem with the phone company and after awhile she accepted this and didn't ask again. Cheryl daughter of Jean Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 Kathy, Mom does have a phone in her room so she can contact Dad and he can call her. I am not sure removing the phone at this point would be a good thing--it is her lifeline to her husband. You are right--she has no idea what it does to him. She called him last evening, and I called and talked to both of them. Today she had no recollection of his being ther, but she sure remembered the halllucination. Their doctor is the one who recommended calling Dad when she was upset. That would prevent her from callin 911, which she has done. There is no easy anwer to any of this. Thanks for sharing your thoughts. Barbara ________________________________ To: LBDcaregivers Sent: Sat, January 7, 2012 2:47:49 PM Subject: Re: anxiety Barbara, Does your mom have a phone in her room? I remember my grandmother, years ago, calling everyone she knew trying to guilt them into taken her out of the nursing home or at least come for extended visits. She would call mom every few minutes. There is nothing wrong with limiting your mom's access to a phone. My mom doesn't have one because of what happened with her mom. We'll, she can't talk either so she never really asked for one. If your mom is using the nurses phone, give them instructions limiting her calls to one a day, made at a specific time. She probably has no concept of what this does to your dad and may not understand or remember the explanation. Where your mom is concerned, you are now stuck with the parental decisions. Kathy Kate Knapp > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel. Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon, Effexor and Sinimet. > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 Thanks, Donna. She is very concerned for his welfare (or at least says she is) so a loving lie might work. It would help if she would call me every once in awhile instead of Dad. I may try that. And maybe I can get Dad to tell that loving lie if he really does not feel like going. God knows he has enough physical complaints that it might not be that much of a lie! I realize this is all trial and error, but it sure helps to hear what has worked or hasn't worked from people with experience. Barbara ________________________________ To: LBDcaregivers Sent: Sat, January 7, 2012 10:56:46 PM Subject: Re: anxiety Barb, I would think up a " loving lie,' so she doesn't have to be so distressed. Is there something she would accept? He has a cold and doesn't want to give it to her? Or what ever she will accept.You know her and remind her you are taking his place? Maybe she won't want to hurt your feelings. There are things they will accept. Tell her he was there earlier, " don't you remember? " And tell her that is what her sickness does, is not let her always remember. Or whatever you think might work. I found some things by accident that worked. Hugs, Donna R Re: [ LBDcaregivers ] anxiety Kate Knapp On Jan 7, 2012 12:06 PM, " Barbara " < barbara _ austen @ att .net> wrote: > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel . Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon , Effexor and Sinimet . > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 , What a horrible thing to have happened to your husband. I hope he has recovered. Mom has been on Seroquel for several years now, so I doubt the small amount that was given as the increase would have that dramatic effect. I am calling the nurses tomorrow to get more information. Some of the CNAs say Mom's hallucinations have subsided a bit and are certainly less firghtening than they were. Part of me wishes I was there all the time so I could monitor what is happening with her. Thanks for the article--I will be sure and read it. And thank you for your reply. Barbara ________________________________ To: LBDcaregivers Sent: Sat, January 7, 2012 10:16:19 AM Subject: Re: anxiety My husband Bob, had a very bad paranoid delusional reaction that got worse as they increased his Seroquel dose to try to help with the hallucinations. It was so bad that he had to be hospitalized in a locked psych ward for 3 weeks, and then went to rehab for 21 days. Now he has Seroquel listed as an allergy on his chart to make sure no one ever gives it to him again. YES Seroquel can increase anxiety and delusions and cause physical ailments in LBD patients. I would recommend stopping it and using Klonopin at bedtime instead. Please read the attached article about LBD treatment by Dr. Boeve of Mayo Clinic. Best Wishes, Pat M. > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel. Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon, Effexor and Sinimet. > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 Barb, is the phone a direct line out or is it necessary to dial a 9 or some other digit to place a call? If this is the case, the phone can be set up to only dial certain numbers or even to not place calls at all. Check with the IT staff at the facility. Another thing that could be done is to unplug her phone except for a specific time when she can call your dad - once daily. The staff can keep the phone at the nurses station and your dad or anyone else could call the nurse to connect the phone so that the call to her can be placed. Before phone systems reached a point at which phones could be turned on and off easily, this was a common practice for hospital patients that needed undisturbed rest. Just a couple ideas. Kathy Kate Knapp > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel. Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon, Effexor and Sinimet. > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2012 Report Share Posted January 9, 2012 Kate, Unfortunately she does not need to dial a 9 to get an outisde line. I will talk to the nurses about alternatives, but I don't have a lot of hope. Evidently, because she calls Dad, they are unaware of her episodes. I need to work with both Mom and Dad, and I am seriously thinking of changing her speed dial so the first number is a CNA or nurse. Barbara ________________________________ To: LBDcaregivers Sent: Sun, January 8, 2012 7:49:32 PM Subject: Re: anxiety Barb, is the phone a direct line out or is it necessary to dial a 9 or some other digit to place a call? If this is the case, the phone can be set up to only dial certain numbers or even to not place calls at all. Check with the IT staff at the facility. Another thing that could be done is to unplug her phone except for a specific time when she can call your dad - once daily. The staff can keep the phone at the nurses station and your dad or anyone else could call the nurse to connect the phone so that the call to her can be placed. Before phone systems reached a point at which phones could be turned on and off easily, this was a common practice for hospital patients that needed undisturbed rest. Just a couple ideas. Kathy Kate Knapp > ** > > > I have been listening to this list for about three years now and post > infrequently. I have learned so much from all of you. > > My Mom was diagnosed about four years ago with LBD and since then I moved > both her and my Dad to an assisted living facility nearby. Dad does not > have dementia so he lives in regular assisted living. Mom is in a locked > " memory " unit. She has had a lot of trouble understanding why she and Dad > cannot live in the same room, despite nuemerous conversations. This week, > after Dad saw his doctor (which is the same doctor Mom sees) he reduced the > number of visits to Mom in order to protect his own health per doctor's > order(he has too many problems to go into--suffice it to say he has > congestive heart failure). Now when Dad does not visit, she has a full > blown anxiety attack and calls him all upset and is inconsolable. It takes > a CNA to calm her down. Of course, this just upsets Dad more. > > Mom's hallucinations were getting worse so about two weeks ago we gently > increased her Seroquel. Based on your collective experience, could the > increase in Seroquel lead to increased anxiety? I know everyone with LBD > reacts differently, but I could use a bit of guidance. In addition to > Seroquel Mom is on Exelon, Effexor and Sinimet. > > My heart goes out to everyone who recently lost a loved one, or is in the > final process. I love my Mom, but I wish she could go quickly. > > Barbara > daughter of Betsy, aged 80 > > > Quote Link to comment Share on other sites More sharing options...
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