Guest guest Posted March 4, 2012 Report Share Posted March 4, 2012 ,  Your situation with your husband is heartwrenching for me. My dad has LBD, but my mom is his caregiver. Mom gets out of the house most of the time when my brother or I relieve her. I did hire a personal sitter for him the other day---he was so upset about it--ranting and raving to my mom about not needing one, but I pushed on with it and he really enjoyed talking with the sitter after-the-fact. My mom needed that and needs someone as an alternative in case we cannot sit with dad when she needs it.  Dad has similar symptoms of LBD like your husband, but probably not as bad. Dad is paranoid, but not towards mom. His paranoia is safety, keeping the doors, window etc secure. Mom cannot even sit in the living room after he goes to bed without him getting up to check and see if she is okay. Once she goes to bed is the only time that he can calm down. The problem with that is he is sleeping almost all the time anymore. He gets up to eat his three meals, but back to bed he goes. He is a stubborn person and its hard for her to get him to change his routine. He is not interested in tv or getting out of the house anymore.  Regarding the " no support group " in your area; why don't you start a group? I've thought of doing the same thing in my area. I have contact the LBD Association to get help starting one. There are plenty of Alzheimer groups but no LBD. The families of LBD should start educating our public and our doctors on the disease. I have an opportunity through my psychology class to research Lewy Bodies for a paper I have to do this month. I am so in hopes I can find out more about the terrible disease.  My prayers are with you for fresh ideas of how to manage his condition. Mom flip flops back and forth from going along with his stories/dreams to telling him it was a dream. He knows they are dreams but he believes the dreams are reality. There's no convincing him they are not real. That is LBD we have come to accept.  Living with LBD is a daily walk-never knowing how it will behave tomorrow.  Pamela Hutchins ________________________________ To: LBDcaregivers Sent: Friday, March 2, 2012 12:18 PM Subject: new tactic  I read what everyone said yesterday. I then decided " if I can't beat him, join him " (in his reality). I explained how difficult it was that he believed I was the only person responsible for taking his things. I pointed out a couple items I have misplaced and asked him if he took them, and of course he said no. I noted I didn't think he did, but wasn't it odd that we were both missing things? He asked me " well who else, but you is here? " I pointed out the key in the lock box outside that he has given the code to roughly 3 dozen people in the last 10 years, and the fact that the front window stays open all the time. I know that no one has broken in, but it actually made him stop and think about the possibilities as I mentioned all the names of who had access to the key. I offered to purchase a security camera for him so he could see who was doing it. He is considering that option. I am not sure about the long term advantage of his thinking of someone else and not me, but he quit yelling at me for a few hours last night. Is it wrong to steer him to suspect someone else, who is in no way around? It wouldn't take much (I am thinking) to make him believe it is his ex wife from 20 years ago. Many of the things he accuses me of are things she really did to him, like hiding money, stealing from him and cheating on him with another woman, so I believe her actions form the foundation for his beliefs about me. In the beginning of his diagnosis of Parkinson's, before he got really bad (and his " episodes " as I called them were only about 2-3 times a year), this was an issue we discussed with the counselor. back when he could still reason somewhat. She was able to help him see he was holding me responsible for her mistakes. It stopped for about 4 months and started back up worse than ever. Since this was about the same time I felt him changing in many ways, it is possibly when the LB started to really take him. After that, there was no ability to have him reason anything. I guess what I really need to know is how long this goes on? I already feel as if I can't take anymore of this. Since I work with a mental health community of caregivers in a treatment facility for the seriously mentally ill, they are wonderful to talk to, so I have used that to my advantage for support, but I can't possibly share how bad it really is. But now they are noticing the stress on my face and continually asking me if I am okay. I can't get away without awful accusations when I return. He pours over all the bank statements questioning anything he doesn't agree with or know about, even money he spent that is now my expenditure since he doesn't remember spending it. If I am away from him, he phones me every 20-30 minutes.even when I am at work. He just wants to know what I am doing and who is with me. When I head home, I call and let him know I am on the way, and if I am 1-minutes past when he thinks I should be there, he calls me. What I need is a big hug and a long cry and I know many of you have felt that way. You have to have if you went through this too. I also want to run away and not return. But I can't and I know that. So today, perhaps I will head to Frys or Best Buy and get a camera. I have to get him off of me, if even for awhile. On a change of subject, perhaps someone can help me with the hording thing. He has rescued 4 cats and numerous dogs and they are all here. still. I cannot get him to part with/share/place any of them, and I don't need to say how difficult it is for me to keep up with them as well as him. I also have my own pets, but if I mention placing them, they become " his " . We have two bedrooms I cannot walk in and two other rooms quickly getting that way, so my house is closing in around me. Will the proper medications and treatment help with any of this? In light of all the accusations that are now here with me taking things and throwing them out I really can't get rid of anything. Has anyone else dealt with his? What has worked or not worked? And yes, he continues to spend money and drag in more things " we might need " or that he really likes. He is particularly into cat statues right now, and since the local Goodwill always has something " cat " it is a weekly, or multi-weekly thing to purchase. The statues are all over the house and I cannot even venture a guess at how many we might have now. Thank you so much for listening. I have needed this for far too long. And I guess I am here for the long haul. I hope I get to know you all really well and that I may consider you my sisters. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2012 Report Share Posted March 4, 2012 ,  Your situation with your husband is heartwrenching for me. My dad has LBD, but my mom is his caregiver. Mom gets out of the house most of the time when my brother or I relieve her. I did hire a personal sitter for him the other day---he was so upset about it--ranting and raving to my mom about not needing one, but I pushed on with it and he really enjoyed talking with the sitter after-the-fact. My mom needed that and needs someone as an alternative in case we cannot sit with dad when she needs it.  Dad has similar symptoms of LBD like your husband, but probably not as bad. Dad is paranoid, but not towards mom. His paranoia is safety, keeping the doors, window etc secure. Mom cannot even sit in the living room after he goes to bed without him getting up to check and see if she is okay. Once she goes to bed is the only time that he can calm down. The problem with that is he is sleeping almost all the time anymore. He gets up to eat his three meals, but back to bed he goes. He is a stubborn person and its hard for her to get him to change his routine. He is not interested in tv or getting out of the house anymore.  Regarding the " no support group " in your area; why don't you start a group? I've thought of doing the same thing in my area. I have contact the LBD Association to get help starting one. There are plenty of Alzheimer groups but no LBD. The families of LBD should start educating our public and our doctors on the disease. I have an opportunity through my psychology class to research Lewy Bodies for a paper I have to do this month. I am so in hopes I can find out more about the terrible disease.  My prayers are with you for fresh ideas of how to manage his condition. Mom flip flops back and forth from going along with his stories/dreams to telling him it was a dream. He knows they are dreams but he believes the dreams are reality. There's no convincing him they are not real. That is LBD we have come to accept.  Living with LBD is a daily walk-never knowing how it will behave tomorrow.  Pamela Hutchins ________________________________ To: LBDcaregivers Sent: Friday, March 2, 2012 12:18 PM Subject: new tactic  I read what everyone said yesterday. I then decided " if I can't beat him, join him " (in his reality). I explained how difficult it was that he believed I was the only person responsible for taking his things. I pointed out a couple items I have misplaced and asked him if he took them, and of course he said no. I noted I didn't think he did, but wasn't it odd that we were both missing things? He asked me " well who else, but you is here? " I pointed out the key in the lock box outside that he has given the code to roughly 3 dozen people in the last 10 years, and the fact that the front window stays open all the time. I know that no one has broken in, but it actually made him stop and think about the possibilities as I mentioned all the names of who had access to the key. I offered to purchase a security camera for him so he could see who was doing it. He is considering that option. I am not sure about the long term advantage of his thinking of someone else and not me, but he quit yelling at me for a few hours last night. Is it wrong to steer him to suspect someone else, who is in no way around? It wouldn't take much (I am thinking) to make him believe it is his ex wife from 20 years ago. Many of the things he accuses me of are things she really did to him, like hiding money, stealing from him and cheating on him with another woman, so I believe her actions form the foundation for his beliefs about me. In the beginning of his diagnosis of Parkinson's, before he got really bad (and his " episodes " as I called them were only about 2-3 times a year), this was an issue we discussed with the counselor. back when he could still reason somewhat. She was able to help him see he was holding me responsible for her mistakes. It stopped for about 4 months and started back up worse than ever. Since this was about the same time I felt him changing in many ways, it is possibly when the LB started to really take him. After that, there was no ability to have him reason anything. I guess what I really need to know is how long this goes on? I already feel as if I can't take anymore of this. Since I work with a mental health community of caregivers in a treatment facility for the seriously mentally ill, they are wonderful to talk to, so I have used that to my advantage for support, but I can't possibly share how bad it really is. But now they are noticing the stress on my face and continually asking me if I am okay. I can't get away without awful accusations when I return. He pours over all the bank statements questioning anything he doesn't agree with or know about, even money he spent that is now my expenditure since he doesn't remember spending it. If I am away from him, he phones me every 20-30 minutes.even when I am at work. He just wants to know what I am doing and who is with me. When I head home, I call and let him know I am on the way, and if I am 1-minutes past when he thinks I should be there, he calls me. What I need is a big hug and a long cry and I know many of you have felt that way. You have to have if you went through this too. I also want to run away and not return. But I can't and I know that. So today, perhaps I will head to Frys or Best Buy and get a camera. I have to get him off of me, if even for awhile. On a change of subject, perhaps someone can help me with the hording thing. He has rescued 4 cats and numerous dogs and they are all here. still. I cannot get him to part with/share/place any of them, and I don't need to say how difficult it is for me to keep up with them as well as him. I also have my own pets, but if I mention placing them, they become " his " . We have two bedrooms I cannot walk in and two other rooms quickly getting that way, so my house is closing in around me. Will the proper medications and treatment help with any of this? In light of all the accusations that are now here with me taking things and throwing them out I really can't get rid of anything. Has anyone else dealt with his? What has worked or not worked? And yes, he continues to spend money and drag in more things " we might need " or that he really likes. He is particularly into cat statues right now, and since the local Goodwill always has something " cat " it is a weekly, or multi-weekly thing to purchase. The statues are all over the house and I cannot even venture a guess at how many we might have now. Thank you so much for listening. I have needed this for far too long. And I guess I am here for the long haul. I hope I get to know you all really well and that I may consider you my sisters. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2012 Report Share Posted March 4, 2012 ,  Your situation with your husband is heartwrenching for me. My dad has LBD, but my mom is his caregiver. Mom gets out of the house most of the time when my brother or I relieve her. I did hire a personal sitter for him the other day---he was so upset about it--ranting and raving to my mom about not needing one, but I pushed on with it and he really enjoyed talking with the sitter after-the-fact. My mom needed that and needs someone as an alternative in case we cannot sit with dad when she needs it.  Dad has similar symptoms of LBD like your husband, but probably not as bad. Dad is paranoid, but not towards mom. His paranoia is safety, keeping the doors, window etc secure. Mom cannot even sit in the living room after he goes to bed without him getting up to check and see if she is okay. Once she goes to bed is the only time that he can calm down. The problem with that is he is sleeping almost all the time anymore. He gets up to eat his three meals, but back to bed he goes. He is a stubborn person and its hard for her to get him to change his routine. He is not interested in tv or getting out of the house anymore.  Regarding the " no support group " in your area; why don't you start a group? I've thought of doing the same thing in my area. I have contact the LBD Association to get help starting one. There are plenty of Alzheimer groups but no LBD. The families of LBD should start educating our public and our doctors on the disease. I have an opportunity through my psychology class to research Lewy Bodies for a paper I have to do this month. I am so in hopes I can find out more about the terrible disease.  My prayers are with you for fresh ideas of how to manage his condition. Mom flip flops back and forth from going along with his stories/dreams to telling him it was a dream. He knows they are dreams but he believes the dreams are reality. There's no convincing him they are not real. That is LBD we have come to accept.  Living with LBD is a daily walk-never knowing how it will behave tomorrow.  Pamela Hutchins ________________________________ To: LBDcaregivers Sent: Friday, March 2, 2012 12:18 PM Subject: new tactic  I read what everyone said yesterday. I then decided " if I can't beat him, join him " (in his reality). I explained how difficult it was that he believed I was the only person responsible for taking his things. I pointed out a couple items I have misplaced and asked him if he took them, and of course he said no. I noted I didn't think he did, but wasn't it odd that we were both missing things? He asked me " well who else, but you is here? " I pointed out the key in the lock box outside that he has given the code to roughly 3 dozen people in the last 10 years, and the fact that the front window stays open all the time. I know that no one has broken in, but it actually made him stop and think about the possibilities as I mentioned all the names of who had access to the key. I offered to purchase a security camera for him so he could see who was doing it. He is considering that option. I am not sure about the long term advantage of his thinking of someone else and not me, but he quit yelling at me for a few hours last night. Is it wrong to steer him to suspect someone else, who is in no way around? It wouldn't take much (I am thinking) to make him believe it is his ex wife from 20 years ago. Many of the things he accuses me of are things she really did to him, like hiding money, stealing from him and cheating on him with another woman, so I believe her actions form the foundation for his beliefs about me. In the beginning of his diagnosis of Parkinson's, before he got really bad (and his " episodes " as I called them were only about 2-3 times a year), this was an issue we discussed with the counselor. back when he could still reason somewhat. She was able to help him see he was holding me responsible for her mistakes. It stopped for about 4 months and started back up worse than ever. Since this was about the same time I felt him changing in many ways, it is possibly when the LB started to really take him. After that, there was no ability to have him reason anything. I guess what I really need to know is how long this goes on? I already feel as if I can't take anymore of this. Since I work with a mental health community of caregivers in a treatment facility for the seriously mentally ill, they are wonderful to talk to, so I have used that to my advantage for support, but I can't possibly share how bad it really is. But now they are noticing the stress on my face and continually asking me if I am okay. I can't get away without awful accusations when I return. He pours over all the bank statements questioning anything he doesn't agree with or know about, even money he spent that is now my expenditure since he doesn't remember spending it. If I am away from him, he phones me every 20-30 minutes.even when I am at work. He just wants to know what I am doing and who is with me. When I head home, I call and let him know I am on the way, and if I am 1-minutes past when he thinks I should be there, he calls me. What I need is a big hug and a long cry and I know many of you have felt that way. You have to have if you went through this too. I also want to run away and not return. But I can't and I know that. So today, perhaps I will head to Frys or Best Buy and get a camera. I have to get him off of me, if even for awhile. On a change of subject, perhaps someone can help me with the hording thing. He has rescued 4 cats and numerous dogs and they are all here. still. I cannot get him to part with/share/place any of them, and I don't need to say how difficult it is for me to keep up with them as well as him. I also have my own pets, but if I mention placing them, they become " his " . We have two bedrooms I cannot walk in and two other rooms quickly getting that way, so my house is closing in around me. Will the proper medications and treatment help with any of this? In light of all the accusations that are now here with me taking things and throwing them out I really can't get rid of anything. Has anyone else dealt with his? What has worked or not worked? And yes, he continues to spend money and drag in more things " we might need " or that he really likes. He is particularly into cat statues right now, and since the local Goodwill always has something " cat " it is a weekly, or multi-weekly thing to purchase. The statues are all over the house and I cannot even venture a guess at how many we might have now. Thank you so much for listening. I have needed this for far too long. And I guess I am here for the long haul. I hope I get to know you all really well and that I may consider you my sisters. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2012 Report Share Posted March 4, 2012 Hi , Please don't waste your money on a camera. We bought one for my mother - it sends input wirelessly into her computer and we can watch it remotely from multiple sites. (It also stores any motion-detected activity.) We got it to reassure her that no one was going into her apartment, because there's only one way in. However, whenever she had a paranoid thought or hallucination and we told her that NO ONE had appeared on the camera, she didn't believe it. In fact, she came up with some bizarre explanations for why the camera didn't show anything, including the idea that " people are opening the door and bending down so that they can't be seen. " First of all, the camera would have shown the door opening (even if not the people), which it wasn't. Secondly, since the camera is extremely well disguised as a mantel clock, how would strangers know that it was a camera? Oh, wait - that's too logical. Logic doesn't work. So now she still thinks people are coming in, but it includes coming in through the closet or ceiling, neither of which has an opening to the outside of the apartment. This is something that we are having a hard time dealing with - that you can't " logic " a demented person out of their delusions. > > I read what everyone said yesterday. I then decided " if I can't beat him, > join him " (in his reality). I explained how difficult it was that he > believed I was the only person responsible for taking his things. I pointed > out a couple items I have misplaced and asked him if he took them, and of > course he said no. I noted I didn't think he did, but wasn't it odd that we > were both missing things? He asked me " well who else, but you is here? " I > pointed out the key in the lock box outside that he has given the code to > roughly 3 dozen people in the last 10 years, and the fact that the front > window stays open all the time. I know that no one has broken in, but it > actually made him stop and think about the possibilities as I mentioned all > the names of who had access to the key. I offered to purchase a security > camera for him so he could see who was doing it. He is considering that > option. > > > > I am not sure about the long term advantage of his thinking of someone else > and not me, but he quit yelling at me for a few hours last night. Is it > wrong to steer him to suspect someone else, who is in no way around? It > wouldn't take much (I am thinking) to make him believe it is his ex wife > from 20 years ago. Many of the things he accuses me of are things she > really did to him, like hiding money, stealing from him and cheating on him > with another woman, so I believe her actions form the foundation for his > beliefs about me. In the beginning of his diagnosis of Parkinson's, before > he got really bad (and his " episodes " as I called them were only about 2-3 > times a year), this was an issue we discussed with the counselor. back when > he could still reason somewhat. She was able to help him see he was holding > me responsible for her mistakes. It stopped for about 4 months and started > back up worse than ever. Since this was about the same time I felt him > changing in many ways, it is possibly when the LB started to really take > him. After that, there was no ability to have him reason anything. > > > > I guess what I really need to know is how long this goes on? I already feel > as if I can't take anymore of this. Since I work with a mental health > community of caregivers in a treatment facility for the seriously mentally > ill, they are wonderful to talk to, so I have used that to my advantage for > support, but I can't possibly share how bad it really is. But now they are > noticing the stress on my face and continually asking me if I am okay. I > can't get away without awful accusations when I return. He pours over all > the bank statements questioning anything he doesn't agree with or know > about, even money he spent that is now my expenditure since he doesn't > remember spending it. If I am away from him, he phones me every 20-30 > minutes.even when I am at work. He just wants to know what I am doing and > who is with me. When I head home, I call and let him know I am on the way, > and if I am 1-minutes past when he thinks I should be there, he calls me. > What I need is a big hug and a long cry and I know many of you have felt > that way. You have to have if you went through this too. I also want to > run away and not return. But I can't and I know that. > > > > So today, perhaps I will head to Frys or Best Buy and get a camera. I have > to get him off of me, if even for awhile. > > > > On a change of subject, perhaps someone can help me with the hording thing. > He has rescued 4 cats and numerous dogs and they are all here. still. I > cannot get him to part with/share/place any of them, and I don't need to say > how difficult it is for me to keep up with them as well as him. I also have > my own pets, but if I mention placing them, they become " his " . We have two > bedrooms I cannot walk in and two other rooms quickly getting that way, so > my house is closing in around me. Will the proper medications and treatment > help with any of this? In light of all the accusations that are now here > with me taking things and throwing them out I really can't get rid of > anything. Has anyone else dealt with his? What has worked or not worked? > And yes, he continues to spend money and drag in more things " we might need " > or that he really likes. He is particularly into cat statues right now, and > since the local Goodwill always has something " cat " it is a weekly, or > multi-weekly thing to purchase. The statues are all over the house and I > cannot even venture a guess at how many we might have now. > > > > Thank you so much for listening. I have needed this for far too long. And > I guess I am here for the long haul. I hope I get to know you all really > well and that I may consider you my sisters. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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