Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Thank you Judy. She advised taking him off all his medications, which he admitted to her he was only taking once daily, not the three times daily he had been prescribed. She explained to him it might help him to identify things if she started him from scratch. She did talk to me about putting him on an antipsychotic and mentioned Exelon to him, but did not tell him what it was for. But she stressed she wants to see if he is better or worse without medications on board. She did explain we would want to get a psychiatrist on board eventually to help with the paranoia and delusions, but said she wanted to take baby steps or she would lose him. She certainly appeared to know this was a possibility with this diagnosis and the baby-step thing sounded reasonable to me. He could potentially accuse her of being in collusion with me and he would not trust either of this. I cannot afford this right now. As for the driving, she will address it with him “if†he flunks his reaction tests. The guns I will have to work on with her and the counselors I am to get. I have to remember what she said “baby stepsâ€. Sure wish I could have all the answers at once, but at least I got the big one answered! Thank you for your support. I am sure it will continue as I work my way down this road of no return and I thank you all for sharing your kindness and experiences. You have already been more help than you know. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Strauss Sent: Tuesday, March 13, 2012 6:40 PM To: LBDcaregivers Subject: Re: update from today - What an update ! At least you finally got a professional confirmation of what you were thinking about the LBD dx. Its also apparent that you thankfully have a supportive team of health professionals to guide you through the lewy maze. I hope you actually Did the mds prescribe any meds for your husband that could help with his state of mind so that you could talk to him about the imp issues on the table ( driving and guns ) ? By the way, LBD is often described as a combo of Alzheimer's and Parkinson's. I'm sending you prayers, strength and courage as you move through this part of the journey ! Keep us informed.... Best, Judy Judy R Strauss, LMSW, PhD Area Chair | College of Social Sciences University of Phoenix Jersey City Campus | 100 Town Square Place | Suite 305 Jersey City, NJ 07310 Cell: Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> > wrote: > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with the > denials. > > It was very apparent to me that this center was as much devoted to caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > Thank you for listening. > > > > Monroe WA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Thank you Judy. She advised taking him off all his medications, which he admitted to her he was only taking once daily, not the three times daily he had been prescribed. She explained to him it might help him to identify things if she started him from scratch. She did talk to me about putting him on an antipsychotic and mentioned Exelon to him, but did not tell him what it was for. But she stressed she wants to see if he is better or worse without medications on board. She did explain we would want to get a psychiatrist on board eventually to help with the paranoia and delusions, but said she wanted to take baby steps or she would lose him. She certainly appeared to know this was a possibility with this diagnosis and the baby-step thing sounded reasonable to me. He could potentially accuse her of being in collusion with me and he would not trust either of this. I cannot afford this right now. As for the driving, she will address it with him “if†he flunks his reaction tests. The guns I will have to work on with her and the counselors I am to get. I have to remember what she said “baby stepsâ€. Sure wish I could have all the answers at once, but at least I got the big one answered! Thank you for your support. I am sure it will continue as I work my way down this road of no return and I thank you all for sharing your kindness and experiences. You have already been more help than you know. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Strauss Sent: Tuesday, March 13, 2012 6:40 PM To: LBDcaregivers Subject: Re: update from today - What an update ! At least you finally got a professional confirmation of what you were thinking about the LBD dx. Its also apparent that you thankfully have a supportive team of health professionals to guide you through the lewy maze. I hope you actually Did the mds prescribe any meds for your husband that could help with his state of mind so that you could talk to him about the imp issues on the table ( driving and guns ) ? By the way, LBD is often described as a combo of Alzheimer's and Parkinson's. I'm sending you prayers, strength and courage as you move through this part of the journey ! Keep us informed.... Best, Judy Judy R Strauss, LMSW, PhD Area Chair | College of Social Sciences University of Phoenix Jersey City Campus | 100 Town Square Place | Suite 305 Jersey City, NJ 07310 Cell: Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> > wrote: > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with the > denials. > > It was very apparent to me that this center was as much devoted to caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > Thank you for listening. > > > > Monroe WA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Thank you Judy. She advised taking him off all his medications, which he admitted to her he was only taking once daily, not the three times daily he had been prescribed. She explained to him it might help him to identify things if she started him from scratch. She did talk to me about putting him on an antipsychotic and mentioned Exelon to him, but did not tell him what it was for. But she stressed she wants to see if he is better or worse without medications on board. She did explain we would want to get a psychiatrist on board eventually to help with the paranoia and delusions, but said she wanted to take baby steps or she would lose him. She certainly appeared to know this was a possibility with this diagnosis and the baby-step thing sounded reasonable to me. He could potentially accuse her of being in collusion with me and he would not trust either of this. I cannot afford this right now. As for the driving, she will address it with him “if†he flunks his reaction tests. The guns I will have to work on with her and the counselors I am to get. I have to remember what she said “baby stepsâ€. Sure wish I could have all the answers at once, but at least I got the big one answered! Thank you for your support. I am sure it will continue as I work my way down this road of no return and I thank you all for sharing your kindness and experiences. You have already been more help than you know. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Strauss Sent: Tuesday, March 13, 2012 6:40 PM To: LBDcaregivers Subject: Re: update from today - What an update ! At least you finally got a professional confirmation of what you were thinking about the LBD dx. Its also apparent that you thankfully have a supportive team of health professionals to guide you through the lewy maze. I hope you actually Did the mds prescribe any meds for your husband that could help with his state of mind so that you could talk to him about the imp issues on the table ( driving and guns ) ? By the way, LBD is often described as a combo of Alzheimer's and Parkinson's. I'm sending you prayers, strength and courage as you move through this part of the journey ! Keep us informed.... Best, Judy Judy R Strauss, LMSW, PhD Area Chair | College of Social Sciences University of Phoenix Jersey City Campus | 100 Town Square Place | Suite 305 Jersey City, NJ 07310 Cell: Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> > wrote: > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with the > denials. > > It was very apparent to me that this center was as much devoted to caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > Thank you for listening. > > > > Monroe WA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 I am aware of the difference, as I work in mental health facility,( not as an MHP, but in the MH arena); but, I think she was hoping with the Exelon on board, we might be able to put off the antipsychotic. As I mentioned, she did say we would eventually need to bring a psychiatrist in and she said she would rather he/she prescribed the antipsychotic. She said they had some that worked with the Center. She also mentioned working with antipsychotics could be tricky and unreliable, and not effective in every case. I knew that from this list! J It will not be easy to tell him he has to see a psychiatrist, as you can imagine. However, I did get him to admit that he saw me kissing another woman, and he told the doctor it wasn’t a hallucination, he SAW me and it was the TRUTH. It was good for me he did that! After that, she would ask him a question and then look at me if she thought his answer wasn’t perhaps what she was looking for. I could tell her with a glance if it was correct or not and she was very good at picking up the small nuances. He was not happy about the reaction tests as I mentioned he frightened me on occasion. He didn’t blow up at me, but did blame me. If she takes the keys away… oh boy. But we will deal with that when it comes! For today, perhaps I am empowered. I feel better than I have in months! Thank you for your kind words. I hold them close and they mean a great deal. I will keep everyone posted with updates. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Strauss Sent: Tuesday, March 13, 2012 8:30 PM To: LBDcaregivers Subject: Re: update from today - First, tonight you sound truly empowered and I salute you and am cheering for your continued great attitude ! Second, I think it's a great idea that the doc will take him off of everything and start from scratch. But I think Excelon is used more for the dementia type symptoms and don't think it's an antipsychotic ! I would think If he could tolerate something more like seroquel or another atypical antipsychotic it would really help him and in turn you . Everyone will react differently too these meds but you will see That those in the group who have had Los on seroquel and it's worked sing the praises of this med. Once again it's so good to see you more centered tonight - please take good care of yourself and don't spare anything to get yourself a personal counselor for your continued mental health. Also don't wait too long to deal with the hot button issues - the weapons and driving - Sorry you found us under these circumstances but at the same time you aren't alone and you now have friends all around the country who really care... Heart hugs, Judy Judy R Strauss, LMSW, PhD Area Chair | College of Social Sciences University of Phoenix Jersey City Campus | 100 Town Square Place | Suite 305 Jersey City, NJ 07310 Cell: Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> On Mar 13, 2012, at 10:18 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> > wrote: > Thank you Judy. She advised taking him off all his medications, which he admitted to her he was only taking once daily, not the three times daily he had been prescribed. She explained to him it might help him to identify things if she started him from scratch. She did talk to me about putting him on an antipsychotic and mentioned Exelon to him, but did not tell him what it was for. But she stressed she wants to see if he is better or worse without medications on board. She did explain we would want to get a psychiatrist on board eventually to help with the paranoia and delusions, but said she wanted to take baby steps or she would lose him. She certainly appeared to know this was a possibility with this diagnosis and the baby-step thing sounded reasonable to me. He could potentially accuse her of being in collusion with me and he would not trust either of this. I cannot afford this right now. > > As for the driving, she will address it with him “if†he flunks his reaction tests. The guns I will have to work on with her and the counselors I am to get. I have to remember what she said “baby stepsâ€. Sure wish I could have all the answers at once, but at least I got the big one answered! > > Thank you for your support. I am sure it will continue as I work my way down this road of no return and I thank you all for sharing your kindness and experiences. You have already been more help than you know. > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy Strauss > Sent: Tuesday, March 13, 2012 6:40 PM > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > Subject: Re: update from today > > - > > What an update ! At least you finally got a professional confirmation of what you were thinking about the LBD dx. Its also apparent that you thankfully have a supportive team of health professionals to guide you through the lewy maze. I hope you actually > Did the mds prescribe any meds for your husband that could help with his state of mind so that you could talk to him about the imp issues on the table ( driving and guns ) ? > By the way, LBD is often described as a combo of Alzheimer's and Parkinson's. > I'm sending you prayers, strength and courage as you move through this part of the journey ! Keep us informed.... > > Best, > > Judy > > Judy R Strauss, LMSW, PhD > Area Chair | College of Social Sciences > > University of Phoenix > Jersey City Campus | 100 Town Square Place | Suite 305 > Jersey City, NJ 07310 > Cell: > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> <mailto:Jrstr%40email.phoenix.edu> > > On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> <mailto:splouff%40comcast.net> > wrote: > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just like > > the drunk driver who kills someone the first time they drove after drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had LBD. > > I told him of all my research. I also reassured him we were in this battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with the > > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 I am aware of the difference, as I work in mental health facility,( not as an MHP, but in the MH arena); but, I think she was hoping with the Exelon on board, we might be able to put off the antipsychotic. As I mentioned, she did say we would eventually need to bring a psychiatrist in and she said she would rather he/she prescribed the antipsychotic. She said they had some that worked with the Center. She also mentioned working with antipsychotics could be tricky and unreliable, and not effective in every case. I knew that from this list! J It will not be easy to tell him he has to see a psychiatrist, as you can imagine. However, I did get him to admit that he saw me kissing another woman, and he told the doctor it wasn’t a hallucination, he SAW me and it was the TRUTH. It was good for me he did that! After that, she would ask him a question and then look at me if she thought his answer wasn’t perhaps what she was looking for. I could tell her with a glance if it was correct or not and she was very good at picking up the small nuances. He was not happy about the reaction tests as I mentioned he frightened me on occasion. He didn’t blow up at me, but did blame me. If she takes the keys away… oh boy. But we will deal with that when it comes! For today, perhaps I am empowered. I feel better than I have in months! Thank you for your kind words. I hold them close and they mean a great deal. I will keep everyone posted with updates. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Strauss Sent: Tuesday, March 13, 2012 8:30 PM To: LBDcaregivers Subject: Re: update from today - First, tonight you sound truly empowered and I salute you and am cheering for your continued great attitude ! Second, I think it's a great idea that the doc will take him off of everything and start from scratch. But I think Excelon is used more for the dementia type symptoms and don't think it's an antipsychotic ! I would think If he could tolerate something more like seroquel or another atypical antipsychotic it would really help him and in turn you . Everyone will react differently too these meds but you will see That those in the group who have had Los on seroquel and it's worked sing the praises of this med. Once again it's so good to see you more centered tonight - please take good care of yourself and don't spare anything to get yourself a personal counselor for your continued mental health. Also don't wait too long to deal with the hot button issues - the weapons and driving - Sorry you found us under these circumstances but at the same time you aren't alone and you now have friends all around the country who really care... Heart hugs, Judy Judy R Strauss, LMSW, PhD Area Chair | College of Social Sciences University of Phoenix Jersey City Campus | 100 Town Square Place | Suite 305 Jersey City, NJ 07310 Cell: Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> On Mar 13, 2012, at 10:18 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> > wrote: > Thank you Judy. She advised taking him off all his medications, which he admitted to her he was only taking once daily, not the three times daily he had been prescribed. She explained to him it might help him to identify things if she started him from scratch. She did talk to me about putting him on an antipsychotic and mentioned Exelon to him, but did not tell him what it was for. But she stressed she wants to see if he is better or worse without medications on board. She did explain we would want to get a psychiatrist on board eventually to help with the paranoia and delusions, but said she wanted to take baby steps or she would lose him. She certainly appeared to know this was a possibility with this diagnosis and the baby-step thing sounded reasonable to me. He could potentially accuse her of being in collusion with me and he would not trust either of this. I cannot afford this right now. > > As for the driving, she will address it with him “if†he flunks his reaction tests. The guns I will have to work on with her and the counselors I am to get. I have to remember what she said “baby stepsâ€. Sure wish I could have all the answers at once, but at least I got the big one answered! > > Thank you for your support. I am sure it will continue as I work my way down this road of no return and I thank you all for sharing your kindness and experiences. You have already been more help than you know. > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy Strauss > Sent: Tuesday, March 13, 2012 6:40 PM > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > Subject: Re: update from today > > - > > What an update ! At least you finally got a professional confirmation of what you were thinking about the LBD dx. Its also apparent that you thankfully have a supportive team of health professionals to guide you through the lewy maze. I hope you actually > Did the mds prescribe any meds for your husband that could help with his state of mind so that you could talk to him about the imp issues on the table ( driving and guns ) ? > By the way, LBD is often described as a combo of Alzheimer's and Parkinson's. > I'm sending you prayers, strength and courage as you move through this part of the journey ! Keep us informed.... > > Best, > > Judy > > Judy R Strauss, LMSW, PhD > Area Chair | College of Social Sciences > > University of Phoenix > Jersey City Campus | 100 Town Square Place | Suite 305 > Jersey City, NJ 07310 > Cell: > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> <mailto:Jrstr%40email.phoenix.edu> > > On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> <mailto:splouff%40comcast.net> > wrote: > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just like > > the drunk driver who kills someone the first time they drove after drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had LBD. > > I told him of all my research. I also reassured him we were in this battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with the > > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 I am aware of the difference, as I work in mental health facility,( not as an MHP, but in the MH arena); but, I think she was hoping with the Exelon on board, we might be able to put off the antipsychotic. As I mentioned, she did say we would eventually need to bring a psychiatrist in and she said she would rather he/she prescribed the antipsychotic. She said they had some that worked with the Center. She also mentioned working with antipsychotics could be tricky and unreliable, and not effective in every case. I knew that from this list! J It will not be easy to tell him he has to see a psychiatrist, as you can imagine. However, I did get him to admit that he saw me kissing another woman, and he told the doctor it wasn’t a hallucination, he SAW me and it was the TRUTH. It was good for me he did that! After that, she would ask him a question and then look at me if she thought his answer wasn’t perhaps what she was looking for. I could tell her with a glance if it was correct or not and she was very good at picking up the small nuances. He was not happy about the reaction tests as I mentioned he frightened me on occasion. He didn’t blow up at me, but did blame me. If she takes the keys away… oh boy. But we will deal with that when it comes! For today, perhaps I am empowered. I feel better than I have in months! Thank you for your kind words. I hold them close and they mean a great deal. I will keep everyone posted with updates. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Strauss Sent: Tuesday, March 13, 2012 8:30 PM To: LBDcaregivers Subject: Re: update from today - First, tonight you sound truly empowered and I salute you and am cheering for your continued great attitude ! Second, I think it's a great idea that the doc will take him off of everything and start from scratch. But I think Excelon is used more for the dementia type symptoms and don't think it's an antipsychotic ! I would think If he could tolerate something more like seroquel or another atypical antipsychotic it would really help him and in turn you . Everyone will react differently too these meds but you will see That those in the group who have had Los on seroquel and it's worked sing the praises of this med. Once again it's so good to see you more centered tonight - please take good care of yourself and don't spare anything to get yourself a personal counselor for your continued mental health. Also don't wait too long to deal with the hot button issues - the weapons and driving - Sorry you found us under these circumstances but at the same time you aren't alone and you now have friends all around the country who really care... Heart hugs, Judy Judy R Strauss, LMSW, PhD Area Chair | College of Social Sciences University of Phoenix Jersey City Campus | 100 Town Square Place | Suite 305 Jersey City, NJ 07310 Cell: Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> On Mar 13, 2012, at 10:18 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> > wrote: > Thank you Judy. She advised taking him off all his medications, which he admitted to her he was only taking once daily, not the three times daily he had been prescribed. She explained to him it might help him to identify things if she started him from scratch. She did talk to me about putting him on an antipsychotic and mentioned Exelon to him, but did not tell him what it was for. But she stressed she wants to see if he is better or worse without medications on board. She did explain we would want to get a psychiatrist on board eventually to help with the paranoia and delusions, but said she wanted to take baby steps or she would lose him. She certainly appeared to know this was a possibility with this diagnosis and the baby-step thing sounded reasonable to me. He could potentially accuse her of being in collusion with me and he would not trust either of this. I cannot afford this right now. > > As for the driving, she will address it with him “if†he flunks his reaction tests. The guns I will have to work on with her and the counselors I am to get. I have to remember what she said “baby stepsâ€. Sure wish I could have all the answers at once, but at least I got the big one answered! > > Thank you for your support. I am sure it will continue as I work my way down this road of no return and I thank you all for sharing your kindness and experiences. You have already been more help than you know. > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy Strauss > Sent: Tuesday, March 13, 2012 6:40 PM > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > Subject: Re: update from today > > - > > What an update ! At least you finally got a professional confirmation of what you were thinking about the LBD dx. Its also apparent that you thankfully have a supportive team of health professionals to guide you through the lewy maze. I hope you actually > Did the mds prescribe any meds for your husband that could help with his state of mind so that you could talk to him about the imp issues on the table ( driving and guns ) ? > By the way, LBD is often described as a combo of Alzheimer's and Parkinson's. > I'm sending you prayers, strength and courage as you move through this part of the journey ! Keep us informed.... > > Best, > > Judy > > Judy R Strauss, LMSW, PhD > Area Chair | College of Social Sciences > > University of Phoenix > Jersey City Campus | 100 Town Square Place | Suite 305 > Jersey City, NJ 07310 > Cell: > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> <mailto:Jrstr%40email.phoenix.edu> > > On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto:splouff%40comcast.net> <mailto:splouff%40comcast.net> > wrote: > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just like > > the drunk driver who kills someone the first time they drove after drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had LBD. > > I told him of all my research. I also reassured him we were in this battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with the > > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Dear , It seems that you have found a wonderful resource! I was impressed that they are concerned about your well-being as well as Len's. It is horrible to get the diagnosis. I still remember my mother telling me, and we'd already pretty much suspected that she had LBD. She was able to tell me what would happen to her, and it all seemed so unreal and unfathomable to all of us. If you can't get the rifles out of the house, at least for now, get the bullets out. I wish you luck and much strength as you move forward. Hugs from NY, Helene (Mom 78, 12 years with LBD) > > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with the > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > > > Thank you for listening. > > > > > > Monroe WA > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Dear , It seems that you have found a wonderful resource! I was impressed that they are concerned about your well-being as well as Len's. It is horrible to get the diagnosis. I still remember my mother telling me, and we'd already pretty much suspected that she had LBD. She was able to tell me what would happen to her, and it all seemed so unreal and unfathomable to all of us. If you can't get the rifles out of the house, at least for now, get the bullets out. I wish you luck and much strength as you move forward. Hugs from NY, Helene (Mom 78, 12 years with LBD) > > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with the > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > > > Thank you for listening. > > > > > > Monroe WA > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Dear , It seems that you have found a wonderful resource! I was impressed that they are concerned about your well-being as well as Len's. It is horrible to get the diagnosis. I still remember my mother telling me, and we'd already pretty much suspected that she had LBD. She was able to tell me what would happen to her, and it all seemed so unreal and unfathomable to all of us. If you can't get the rifles out of the house, at least for now, get the bullets out. I wish you luck and much strength as you move forward. Hugs from NY, Helene (Mom 78, 12 years with LBD) > > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with the > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > > > Thank you for listening. > > > > > > Monroe WA > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Hi Again, My Mom was given Lexapro, before the LBD diagnosis, as an anti-depressant - that gave her lots of hallucinations. The gastroenterologist put Mom on the Lexapro, since he thought her stomach issues were caused by depression, but it was definitely the wrong choice - one of the side effects was that it could cause hallucinations, which, boy oh boy, it did! We got Mom to a geriatric psychiatrist, who gave her Paxil. Paxil didn't do much for her either, and she complained about her vision being blurry. The geriatric psychiatrist then put her on zoloft, which had a very positive effect on her. She was also started on aricept, which she was able to tolerate well. Some people use the Exelon patch. The only problem we had with the medications was that my aunt (my Mom's sister) was against her taking the aricept b/c of some risk to her heart, and finally after I and my other 2 siblings complained long and hard enough, after about a year, she acquiesed and gave her the aricept. A few years ago, we added the namenda, which helped a bit, but it did make Mom more sleepy. Hope this information is useful as you move forward. Helene > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just like > > the drunk driver who kills someone the first time they drove after drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had LBD. > > I told him of all my research. I also reassured him we were in this battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with the > > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Hi Again, My Mom was given Lexapro, before the LBD diagnosis, as an anti-depressant - that gave her lots of hallucinations. The gastroenterologist put Mom on the Lexapro, since he thought her stomach issues were caused by depression, but it was definitely the wrong choice - one of the side effects was that it could cause hallucinations, which, boy oh boy, it did! We got Mom to a geriatric psychiatrist, who gave her Paxil. Paxil didn't do much for her either, and she complained about her vision being blurry. The geriatric psychiatrist then put her on zoloft, which had a very positive effect on her. She was also started on aricept, which she was able to tolerate well. Some people use the Exelon patch. The only problem we had with the medications was that my aunt (my Mom's sister) was against her taking the aricept b/c of some risk to her heart, and finally after I and my other 2 siblings complained long and hard enough, after about a year, she acquiesed and gave her the aricept. A few years ago, we added the namenda, which helped a bit, but it did make Mom more sleepy. Hope this information is useful as you move forward. Helene > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just like > > the drunk driver who kills someone the first time they drove after drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had LBD. > > I told him of all my research. I also reassured him we were in this battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with the > > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Hi Again, My Mom was given Lexapro, before the LBD diagnosis, as an anti-depressant - that gave her lots of hallucinations. The gastroenterologist put Mom on the Lexapro, since he thought her stomach issues were caused by depression, but it was definitely the wrong choice - one of the side effects was that it could cause hallucinations, which, boy oh boy, it did! We got Mom to a geriatric psychiatrist, who gave her Paxil. Paxil didn't do much for her either, and she complained about her vision being blurry. The geriatric psychiatrist then put her on zoloft, which had a very positive effect on her. She was also started on aricept, which she was able to tolerate well. Some people use the Exelon patch. The only problem we had with the medications was that my aunt (my Mom's sister) was against her taking the aricept b/c of some risk to her heart, and finally after I and my other 2 siblings complained long and hard enough, after about a year, she acquiesed and gave her the aricept. A few years ago, we added the namenda, which helped a bit, but it did make Mom more sleepy. Hope this information is useful as you move forward. Helene > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just like > > the drunk driver who kills someone the first time they drove after drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had LBD. > > I told him of all my research. I also reassured him we were in this battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with the > > denials. > > > > It was very apparent to me that this center was as much devoted to caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Wow, . You're doing exactly what you should. And what a great doctor! Follow her advice, which is dead on. Do you have any children? Do either of you have any siblings? At 63, he may not take to this, but if you have children or siblings (preferably his) that can " safeguard " his rifles for him, maybe that would help. I suppose that he still sees himself hunting each year, so if a family member is just taking care of his guns, available when he wants to hunt or target shoot (accompanied by said family member) you might be able to convince him that you are very worried about someone stealing his rifles and that they would be safer with this family member. Short of that, how about getting him a new, securely locking, gun cabinet or gun locker, with someone other than him holding the key. You could even give him a fake key or put an alarm on the cabinet. Don't get one of those cabinets that have glass fronts. They are too easy to break into. If you aren't familiar with rifles, learn how they work and make sure they are not loaded. Keep ammunition in another part of the house (I hear the freezer, in butcher wrap, is a popular place). And, for goodness sake,* if he gets his hands on a gun, whether you think it is loaded or not, even with how much you know he loves you, get out of the house and let the police/sheriff handle it.* Yes, they will want to hospitalize him for psychiatric evaluation. But, if it reaches that point, you must do something to protect yourself - either getting him into a different living situation or getting all weapons out of the house (and a lock on the knife drawer). If it comes to that, or he won't hear of moving the guns out, get the police/sheriff to help if there is no one else that can do it. It's what they do and I am sure they would rather help you remove the guns than deal with what could happen if they don't. Back in the 60's, my populist and pacifist grandfather attacked my grandmother with his fists (no guns, no liquor in the house). That was the start of what was diagnosed as AD back then and what Mom's doctor and I strongly believe was LBD. He was immediately gotten out of the house and hospitalized and Grandma changed their living situation before he came home. Lewy can turn the gentlest soul in the world into a threat. In this case, you do what you have to for both your own protection and his. If you have family nearby, or even at a distance, enlist their help through this. No one can do it alone. At some point, you might even want to see is there is an unencumbered family member looking for a place to live in exchange for helping you. Stay safe. Kate > ** > > > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after > drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had > LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with > the > denials. > > It was very apparent to me that this center was as much devoted to > caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > Thank you for listening. > > > > Monroe WA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Wow, . You're doing exactly what you should. And what a great doctor! Follow her advice, which is dead on. Do you have any children? Do either of you have any siblings? At 63, he may not take to this, but if you have children or siblings (preferably his) that can " safeguard " his rifles for him, maybe that would help. I suppose that he still sees himself hunting each year, so if a family member is just taking care of his guns, available when he wants to hunt or target shoot (accompanied by said family member) you might be able to convince him that you are very worried about someone stealing his rifles and that they would be safer with this family member. Short of that, how about getting him a new, securely locking, gun cabinet or gun locker, with someone other than him holding the key. You could even give him a fake key or put an alarm on the cabinet. Don't get one of those cabinets that have glass fronts. They are too easy to break into. If you aren't familiar with rifles, learn how they work and make sure they are not loaded. Keep ammunition in another part of the house (I hear the freezer, in butcher wrap, is a popular place). And, for goodness sake,* if he gets his hands on a gun, whether you think it is loaded or not, even with how much you know he loves you, get out of the house and let the police/sheriff handle it.* Yes, they will want to hospitalize him for psychiatric evaluation. But, if it reaches that point, you must do something to protect yourself - either getting him into a different living situation or getting all weapons out of the house (and a lock on the knife drawer). If it comes to that, or he won't hear of moving the guns out, get the police/sheriff to help if there is no one else that can do it. It's what they do and I am sure they would rather help you remove the guns than deal with what could happen if they don't. Back in the 60's, my populist and pacifist grandfather attacked my grandmother with his fists (no guns, no liquor in the house). That was the start of what was diagnosed as AD back then and what Mom's doctor and I strongly believe was LBD. He was immediately gotten out of the house and hospitalized and Grandma changed their living situation before he came home. Lewy can turn the gentlest soul in the world into a threat. In this case, you do what you have to for both your own protection and his. If you have family nearby, or even at a distance, enlist their help through this. No one can do it alone. At some point, you might even want to see is there is an unencumbered family member looking for a place to live in exchange for helping you. Stay safe. Kate > ** > > > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after > drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had > LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with > the > denials. > > It was very apparent to me that this center was as much devoted to > caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > Thank you for listening. > > > > Monroe WA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Wow, . You're doing exactly what you should. And what a great doctor! Follow her advice, which is dead on. Do you have any children? Do either of you have any siblings? At 63, he may not take to this, but if you have children or siblings (preferably his) that can " safeguard " his rifles for him, maybe that would help. I suppose that he still sees himself hunting each year, so if a family member is just taking care of his guns, available when he wants to hunt or target shoot (accompanied by said family member) you might be able to convince him that you are very worried about someone stealing his rifles and that they would be safer with this family member. Short of that, how about getting him a new, securely locking, gun cabinet or gun locker, with someone other than him holding the key. You could even give him a fake key or put an alarm on the cabinet. Don't get one of those cabinets that have glass fronts. They are too easy to break into. If you aren't familiar with rifles, learn how they work and make sure they are not loaded. Keep ammunition in another part of the house (I hear the freezer, in butcher wrap, is a popular place). And, for goodness sake,* if he gets his hands on a gun, whether you think it is loaded or not, even with how much you know he loves you, get out of the house and let the police/sheriff handle it.* Yes, they will want to hospitalize him for psychiatric evaluation. But, if it reaches that point, you must do something to protect yourself - either getting him into a different living situation or getting all weapons out of the house (and a lock on the knife drawer). If it comes to that, or he won't hear of moving the guns out, get the police/sheriff to help if there is no one else that can do it. It's what they do and I am sure they would rather help you remove the guns than deal with what could happen if they don't. Back in the 60's, my populist and pacifist grandfather attacked my grandmother with his fists (no guns, no liquor in the house). That was the start of what was diagnosed as AD back then and what Mom's doctor and I strongly believe was LBD. He was immediately gotten out of the house and hospitalized and Grandma changed their living situation before he came home. Lewy can turn the gentlest soul in the world into a threat. In this case, you do what you have to for both your own protection and his. If you have family nearby, or even at a distance, enlist their help through this. No one can do it alone. At some point, you might even want to see is there is an unencumbered family member looking for a place to live in exchange for helping you. Stay safe. Kate > ** > > > Well, Len had his appointment at Booth Gardner today. After all the > rudimentary tests, the doctor said what I have suspected for months. he has > Lewy Body Disease and not Parkinson's. She separated the two, which I had > read were different, but I still thought LBD was a type of Parkinson's. So > often they are used in the same sentence. I have so much to learn. After > the meeting she met with me separately. I couldn't help myself, the tears > fell freely as I told her what was going on at home. She asked if I had a > POA, which I do not yet, since I am " trying to take everything he has " and > he was resistive of even a will. She assured me after the memory / neuro > testing she would get us to some counselors who would assist in making that > happen. > > She referred him for a reaction test, which he is starting on Thursday. She > advised me that the first order of business is to get the keys out of his > hands. I naively said he was good " most of the time " and felt this was > premature. She said one time of me being frightened was too many! Just like > the drunk driver who kills someone the first time they drove after > drinking, > it only takes once. Never really occurred to me that way. So much to > consider!! It will kill him to give up his keys. It is really all his has > left after losing his job. Part of me wants him to pass the darn test. I > am not ready to take on that battle, too. She offered to have someone do > home checks, but I don't think we are there yet. > > I have to think of a way to get the rifles out of the house. She was very > concerned about the guns. Again, I will face wrath if anything is missing, > since I am already accused of taking so much. Anyone have any ideas? " He > is completely in denial that he has any issues, self diagnosing to the > doctor that his problem is just that he is getting " old " (at 63) and that > his issues were " natural and age related. " The doctor listened > compassionately, and then told him he had LBD. He didn't seem to listen or > understand what she said. > > On the way home he asked me if I had learned anything from the meeting. My > mind raced as I thought of everything that was discussed. I finally said, > gently, no. I explained that she had confirmed what I had suspected ever > since I heard his other neurologist thought it was a possibility he had > LBD. > I told him of all my research. I also reassured him we were in this battle > together, and reaffirmed the words " together " so he would know he wasn't > alone in this battle. If only he knew, but he doesn't. I am not sure he > really is capable of fully comprehending this diagnosis, especially with > the > denials. > > It was very apparent to me that this center was as much devoted to > caregiver > support as patient care. I found warmth, caring and support there. I know > my journey will not be alone. > > Thank you for listening. > > > > Monroe WA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 , I wholeheartedly agree with taking " baby steps. " But in the case of deadly weapons - the rifles and yes, the car - delay could have serious consequences. You need to have the doctor's help and advice, but I believe that you need to move on these two things right away. If you move in baby steps on these and something extreme takes place, what would you do then? By dealing with these things quickly, you protect yourself, your husband, and every adult and child in town. You can't predict what Lewy will do or when he will do it. Kate > ** > > > Thank you Judy. She advised taking him off all his medications, which he > admitted to her he was only taking once daily, not the three times daily he > had been prescribed. She explained to him it might help him to identify > things if she started him from scratch. She did talk to me about putting > him on an antipsychotic and mentioned Exelon to him, but did not tell him > what it was for. But she stressed she wants to see if he is better or worse > without medications on board. She did explain we would want to get a > psychiatrist on board eventually to help with the paranoia and delusions, > but said she wanted to take baby steps or she would lose him. She certainly > appeared to know this was a possibility with this diagnosis and the > baby-step thing sounded reasonable to me. He could potentially accuse her > of being in collusion with me and he would not trust either of this. I > cannot afford this right now. > > As for the driving, she will address it with him “if” he flunks his > reaction tests. The guns I will have to work on with her and the counselors > I am to get. I have to remember what she said “baby steps”. Sure wish I > could have all the answers at once, but at least I got the big one answered! > > Thank you for your support. I am sure it will continue as I work my way > down this road of no return and I thank you all for sharing your kindness > and experiences. You have already been more help than you know. > > > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of Judy Strauss > Sent: Tuesday, March 13, 2012 6:40 PM > To: LBDcaregivers > Subject: Re: update from today > > > - > > What an update ! At least you finally got a professional confirmation of > what you were thinking about the LBD dx. Its also apparent that you > thankfully have a supportive team of health professionals to guide you > through the lewy maze. I hope you actually > Did the mds prescribe any meds for your husband that could help with his > state of mind so that you could talk to him about the imp issues on the > table ( driving and guns ) ? > By the way, LBD is often described as a combo of Alzheimer's and > Parkinson's. > I'm sending you prayers, strength and courage as you move through this > part of the journey ! Keep us informed.... > > Best, > > Judy > > Judy R Strauss, LMSW, PhD > Area Chair | College of Social Sciences > > University of Phoenix > Jersey City Campus | 100 Town Square Place | Suite 305 > Jersey City, NJ 07310 > Cell: > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto: > splouff%40comcast.net> > wrote: > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he > has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. > So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " > and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making > that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. > She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just > like > > the drunk driver who kills someone the first time they drove after > drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is > missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen > or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. > My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had > LBD. > > I told him of all my research. I also reassured him we were in this > battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with > the > > denials. > > > > It was very apparent to me that this center was as much devoted to > caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 , I wholeheartedly agree with taking " baby steps. " But in the case of deadly weapons - the rifles and yes, the car - delay could have serious consequences. You need to have the doctor's help and advice, but I believe that you need to move on these two things right away. If you move in baby steps on these and something extreme takes place, what would you do then? By dealing with these things quickly, you protect yourself, your husband, and every adult and child in town. You can't predict what Lewy will do or when he will do it. Kate > ** > > > Thank you Judy. She advised taking him off all his medications, which he > admitted to her he was only taking once daily, not the three times daily he > had been prescribed. She explained to him it might help him to identify > things if she started him from scratch. She did talk to me about putting > him on an antipsychotic and mentioned Exelon to him, but did not tell him > what it was for. But she stressed she wants to see if he is better or worse > without medications on board. She did explain we would want to get a > psychiatrist on board eventually to help with the paranoia and delusions, > but said she wanted to take baby steps or she would lose him. She certainly > appeared to know this was a possibility with this diagnosis and the > baby-step thing sounded reasonable to me. He could potentially accuse her > of being in collusion with me and he would not trust either of this. I > cannot afford this right now. > > As for the driving, she will address it with him “if” he flunks his > reaction tests. The guns I will have to work on with her and the counselors > I am to get. I have to remember what she said “baby steps”. Sure wish I > could have all the answers at once, but at least I got the big one answered! > > Thank you for your support. I am sure it will continue as I work my way > down this road of no return and I thank you all for sharing your kindness > and experiences. You have already been more help than you know. > > > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of Judy Strauss > Sent: Tuesday, March 13, 2012 6:40 PM > To: LBDcaregivers > Subject: Re: update from today > > > - > > What an update ! At least you finally got a professional confirmation of > what you were thinking about the LBD dx. Its also apparent that you > thankfully have a supportive team of health professionals to guide you > through the lewy maze. I hope you actually > Did the mds prescribe any meds for your husband that could help with his > state of mind so that you could talk to him about the imp issues on the > table ( driving and guns ) ? > By the way, LBD is often described as a combo of Alzheimer's and > Parkinson's. > I'm sending you prayers, strength and courage as you move through this > part of the journey ! Keep us informed.... > > Best, > > Judy > > Judy R Strauss, LMSW, PhD > Area Chair | College of Social Sciences > > University of Phoenix > Jersey City Campus | 100 Town Square Place | Suite 305 > Jersey City, NJ 07310 > Cell: > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto: > splouff%40comcast.net> > wrote: > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he > has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. > So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " > and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making > that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. > She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just > like > > the drunk driver who kills someone the first time they drove after > drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is > missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen > or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. > My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had > LBD. > > I told him of all my research. I also reassured him we were in this > battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with > the > > denials. > > > > It was very apparent to me that this center was as much devoted to > caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 , I wholeheartedly agree with taking " baby steps. " But in the case of deadly weapons - the rifles and yes, the car - delay could have serious consequences. You need to have the doctor's help and advice, but I believe that you need to move on these two things right away. If you move in baby steps on these and something extreme takes place, what would you do then? By dealing with these things quickly, you protect yourself, your husband, and every adult and child in town. You can't predict what Lewy will do or when he will do it. Kate > ** > > > Thank you Judy. She advised taking him off all his medications, which he > admitted to her he was only taking once daily, not the three times daily he > had been prescribed. She explained to him it might help him to identify > things if she started him from scratch. She did talk to me about putting > him on an antipsychotic and mentioned Exelon to him, but did not tell him > what it was for. But she stressed she wants to see if he is better or worse > without medications on board. She did explain we would want to get a > psychiatrist on board eventually to help with the paranoia and delusions, > but said she wanted to take baby steps or she would lose him. She certainly > appeared to know this was a possibility with this diagnosis and the > baby-step thing sounded reasonable to me. He could potentially accuse her > of being in collusion with me and he would not trust either of this. I > cannot afford this right now. > > As for the driving, she will address it with him “if” he flunks his > reaction tests. The guns I will have to work on with her and the counselors > I am to get. I have to remember what she said “baby steps”. Sure wish I > could have all the answers at once, but at least I got the big one answered! > > Thank you for your support. I am sure it will continue as I work my way > down this road of no return and I thank you all for sharing your kindness > and experiences. You have already been more help than you know. > > > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of Judy Strauss > Sent: Tuesday, March 13, 2012 6:40 PM > To: LBDcaregivers > Subject: Re: update from today > > > - > > What an update ! At least you finally got a professional confirmation of > what you were thinking about the LBD dx. Its also apparent that you > thankfully have a supportive team of health professionals to guide you > through the lewy maze. I hope you actually > Did the mds prescribe any meds for your husband that could help with his > state of mind so that you could talk to him about the imp issues on the > table ( driving and guns ) ? > By the way, LBD is often described as a combo of Alzheimer's and > Parkinson's. > I'm sending you prayers, strength and courage as you move through this > part of the journey ! Keep us informed.... > > Best, > > Judy > > Judy R Strauss, LMSW, PhD > Area Chair | College of Social Sciences > > University of Phoenix > Jersey City Campus | 100 Town Square Place | Suite 305 > Jersey City, NJ 07310 > Cell: > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > On Mar 13, 2012, at 8:41 PM, " Plouff " <splouff@... <mailto: > splouff%40comcast.net> > wrote: > > > Well, Len had his appointment at Booth Gardner today. After all the > > rudimentary tests, the doctor said what I have suspected for months. he > has > > Lewy Body Disease and not Parkinson's. She separated the two, which I had > > read were different, but I still thought LBD was a type of Parkinson's. > So > > often they are used in the same sentence. I have so much to learn. After > > the meeting she met with me separately. I couldn't help myself, the tears > > fell freely as I told her what was going on at home. She asked if I had a > > POA, which I do not yet, since I am " trying to take everything he has " > and > > he was resistive of even a will. She assured me after the memory / neuro > > testing she would get us to some counselors who would assist in making > that > > happen. > > > > She referred him for a reaction test, which he is starting on Thursday. > She > > advised me that the first order of business is to get the keys out of his > > hands. I naively said he was good " most of the time " and felt this was > > premature. She said one time of me being frightened was too many! Just > like > > the drunk driver who kills someone the first time they drove after > drinking, > > it only takes once. Never really occurred to me that way. So much to > > consider!! It will kill him to give up his keys. It is really all his has > > left after losing his job. Part of me wants him to pass the darn test. I > > am not ready to take on that battle, too. She offered to have someone do > > home checks, but I don't think we are there yet. > > > > I have to think of a way to get the rifles out of the house. She was very > > concerned about the guns. Again, I will face wrath if anything is > missing, > > since I am already accused of taking so much. Anyone have any ideas? " He > > is completely in denial that he has any issues, self diagnosing to the > > doctor that his problem is just that he is getting " old " (at 63) and that > > his issues were " natural and age related. " The doctor listened > > compassionately, and then told him he had LBD. He didn't seem to listen > or > > understand what she said. > > > > On the way home he asked me if I had learned anything from the meeting. > My > > mind raced as I thought of everything that was discussed. I finally said, > > gently, no. I explained that she had confirmed what I had suspected ever > > since I heard his other neurologist thought it was a possibility he had > LBD. > > I told him of all my research. I also reassured him we were in this > battle > > together, and reaffirmed the words " together " so he would know he wasn't > > alone in this battle. If only he knew, but he doesn't. I am not sure he > > really is capable of fully comprehending this diagnosis, especially with > the > > denials. > > > > It was very apparent to me that this center was as much devoted to > caregiver > > support as patient care. I found warmth, caring and support there. I know > > my journey will not be alone. > > > > Thank you for listening. > > > > > > > > Monroe WA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 These are some tough issues to deal with. I hope the doc gets you to a psychiatrist asap. My husband had issues with paranoia too and Seroquel helped a great deal. As for the car, have you considered " losing " the keys? Maybe you could take them and when he looks for them, claim you don't know where they are. Doesn't he lose things? Once he gets on Seroquel or something similar, he'll be more logical where those issues are concerned. Does he have a son who would like the guns? Did the doctor tell him to get the guns out of the house? We also have guns because my husband used to hunt. Once the Seroquel kicked in, he realized he was hallucinating and paranoid. Now, he doesn't fire any guns until he checks with me to make sure he's not " seeing " something that isn't there. We live on a farm and occasionally he has to shoot a possum that's getting into our garbage. Let the doctor be the fall guy and tell him he isn't safe with the car and guns. My husband also doesn't really understand what LBD is. He knows it's a form of dementia, but he doesn't know how bad it is or what his future holds. I just tell him he'll have confusion (which he already has) and there are times it'll be worse than other times. When he gets upset I remind him that there isn't anything we want to do that we can't still do. We can travel, play with grandkids, go out to eat etc. We might have to do them differently--for instance, I do most of the driving now--but we can still do them. Hang tough. Once they get the meds adjusted, he'll be better. Once his paranoia is under control, you need to talk to him about the disease and get him on board with the decisions concerning his care. Good luck , 54, Wife of Henry, diagonsed in 2009 at age 56 with Parkinson's and LBD at 59. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 These are some tough issues to deal with. I hope the doc gets you to a psychiatrist asap. My husband had issues with paranoia too and Seroquel helped a great deal. As for the car, have you considered " losing " the keys? Maybe you could take them and when he looks for them, claim you don't know where they are. Doesn't he lose things? Once he gets on Seroquel or something similar, he'll be more logical where those issues are concerned. Does he have a son who would like the guns? Did the doctor tell him to get the guns out of the house? We also have guns because my husband used to hunt. Once the Seroquel kicked in, he realized he was hallucinating and paranoid. Now, he doesn't fire any guns until he checks with me to make sure he's not " seeing " something that isn't there. We live on a farm and occasionally he has to shoot a possum that's getting into our garbage. Let the doctor be the fall guy and tell him he isn't safe with the car and guns. My husband also doesn't really understand what LBD is. He knows it's a form of dementia, but he doesn't know how bad it is or what his future holds. I just tell him he'll have confusion (which he already has) and there are times it'll be worse than other times. When he gets upset I remind him that there isn't anything we want to do that we can't still do. We can travel, play with grandkids, go out to eat etc. We might have to do them differently--for instance, I do most of the driving now--but we can still do them. Hang tough. Once they get the meds adjusted, he'll be better. Once his paranoia is under control, you need to talk to him about the disease and get him on board with the decisions concerning his care. Good luck , 54, Wife of Henry, diagonsed in 2009 at age 56 with Parkinson's and LBD at 59. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 These are some tough issues to deal with. I hope the doc gets you to a psychiatrist asap. My husband had issues with paranoia too and Seroquel helped a great deal. As for the car, have you considered " losing " the keys? Maybe you could take them and when he looks for them, claim you don't know where they are. Doesn't he lose things? Once he gets on Seroquel or something similar, he'll be more logical where those issues are concerned. Does he have a son who would like the guns? Did the doctor tell him to get the guns out of the house? We also have guns because my husband used to hunt. Once the Seroquel kicked in, he realized he was hallucinating and paranoid. Now, he doesn't fire any guns until he checks with me to make sure he's not " seeing " something that isn't there. We live on a farm and occasionally he has to shoot a possum that's getting into our garbage. Let the doctor be the fall guy and tell him he isn't safe with the car and guns. My husband also doesn't really understand what LBD is. He knows it's a form of dementia, but he doesn't know how bad it is or what his future holds. I just tell him he'll have confusion (which he already has) and there are times it'll be worse than other times. When he gets upset I remind him that there isn't anything we want to do that we can't still do. We can travel, play with grandkids, go out to eat etc. We might have to do them differently--for instance, I do most of the driving now--but we can still do them. Hang tough. Once they get the meds adjusted, he'll be better. Once his paranoia is under control, you need to talk to him about the disease and get him on board with the decisions concerning his care. Good luck , 54, Wife of Henry, diagonsed in 2009 at age 56 with Parkinson's and LBD at 59. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Hi , I haven't posted here in quite some time, so I guess it's time to resurface. What you're going through with Len sounds so much like what I faced with my Dad. Here are some of my lessons learned: Keys: It was more important to have his own set of keys (symbol or familiarity, it didn't matter) rather than to drive. Since my parents had an old Ford Explorer, there were two keys: one for the doors and one for the ignition. I just made sure his ignition key was " fixed " so it didn't work. If he insists on driving, I would let his Dr notify the state agency to revoke his driving privileges so you're not the bad guy. (She can blame it on her supervisor or a state audit to maintain her rapport with Len.) Guns: If you think they're a safety issue, they ARE. My dad had an arsenal, plus swords, machetes and Bowie knives. My parents lived in their own house across the street from me in south Florida. In 2004, my mom called me one night because dad had a loaded pistol and she was afraid what he might do (harm himself or someone else). My partner, a friend visiting from LA who was a social worker and I went across the street to secure the weapon. Dad said he was going to call 911 since we were stealing his pistol. Since I worked in the mental health field, I had the non-emergency number for the Broward Sheriffs Office on speed-dial and said I would go ahead and call them for him since I had the number. To make a long story a little shorter, the dispatcher misinterpreted the situation and put out a call that there was a hostage situation with guns involved in our 55+ retirement community. Within five minutes, we had three or four BSO squad cars plus what appeared to be a S.W.A.T. team. I was able to talk to them in the front yard, get them to holster their weapons, showed them my Mental Health Employee badge, and gave them a brief synopsis of LBD and " showtime " since all of this excitement would temporarily bring Dad down to become the retired university professor again. He was sounding good and Mom (his devoted wife of 63 years and having her own cognitive deficits) didn't want to say anything in front of him, since she would have to live with the consequences. The saving grace was that despite showtime, Dad couldn't remember his birthday or where he was born. Thankfully, the officers got permission to search the home " for safety reasons " , found all of the weapons and ammunition, and made it real official that they had to secure them until they could do a more complete investigation. They copied all of the serial numbers, etc. and left Dad unarmed. He remembered that until the end (he died in 2005 at age 90)and I would have done the same thing, only sooner if I had been made aware of the loaded weapons. Delusions and hallucinations: If they're not scary to your loved one, don't medicate. We were fortunate in that my Dad's doctor was Dr. Barnea who was licensed in both neurology and psychiatry. (He was one of the two speakers at our first " Many Faces of Lewy Body Dementia " in January 2006. I believe the video is still available on You Tube and through the LBDA office in Atlanta.) We did end up using an HS low dose of Seroquel towards the end along with Wellbutin for depression. (Add Haldol as one of the medications Len is allergic to now, before he goes to an ER or sees another doctor. I did with Dad and it prevented further complications.) Support: You can never have too much! I got phone numbers from folks on this list who I could call if I couldn't email, chat, text, etc. Three of us started meeting for lunch once a month in south Florida. This turned into a caregiver gathering in April of 2005, and that base turned into the first LBD support group by the fall. The January meeting of the LBD support group became a symposium with guest speakers, DVDs, etc. I'll bet that your local Alz and Parkinson's support groups know some families with LBD or PDD, plus we got referrals from neurologists, Meals on Wheels, senior day care centers, etc. Rely on the ESH (Experience, Strength and Hope) from the folks in this group, and then pay it forward. May you find peace through knowledge on this journey. Namaste, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Wow, Carol. Between your Dad's arsenal and the SWAT team, I think you have a " movie of the week. " It sure puts things into perspective. Weapons of any kind in the hands of someone with cognitive, emotional or mental concerns really frighten me. I have no problem with someone who knows what they are doing and can grasp the danger of a loaded weapon, having said weapon around - preferably unloaded. When you think about how common the situation probably is, well - I don't want to think about it! I love the idea about the car keys. I wish we'd had that idea 40 years ago when one of my grandparents kept driving though legally blind. His car became my car and there were so many dents in it that people gave me a wide berth on the highway. I was lucky. Mom stopped driving on her own and gave her car to her grandson as a grad school graduation gift. She asked often where her car was, but when we reminded her what a nice gift she had given Jon, she was more than satisfied. Again I was very lucky because Mom's hallucinations (no delusions that I know of) were fairly benign. Early on, I started talking with her, asking many questions, about them. I never tried to tell her that they weren't real and often asked if she had any idea why the particular person in the hallucination was visiting her. I'd also ask her to tell me about that person. I think that may have helped Mom deal with seeing people that others didn't. I think, comparatively, I probably had it easy compared to you and . I hope that, once in a while, you take stock and consider what you have gone through and what you have achieved just in making sure your dads haven't done anyone any harm. You have my admiration. Kate > ** > > > Hi , I haven't posted here in quite some time, so I guess it's time > to resurface. What you're going through with Len sounds so much like what I > faced with my Dad. Here are some of my lessons learned: > Keys: It was more important to have his own set of keys (symbol or > familiarity, it didn't matter) rather than to drive. Since my parents had > an old Ford Explorer, there were two keys: one for the doors and one for > the ignition. I just made sure his ignition key was " fixed " so it didn't > work. If he insists on driving, I would let his Dr notify the state agency > to revoke his driving privileges so you're not the bad guy. (She can blame > it on her supervisor or a state audit to maintain her rapport with Len.) > Guns: If you think they're a safety issue, they ARE. My dad had an > arsenal, plus swords, machetes and Bowie knives. My parents lived in their > own house across the street from me in south Florida. In 2004, my mom > called me one night because dad had a loaded pistol and she was afraid what > he might do (harm himself or someone else). My partner, a friend visiting > from LA who was a social worker and I went across the street to secure the > weapon. Dad said he was going to call 911 since we were stealing his > pistol. Since I worked in the mental health field, I had the non-emergency > number for the Broward Sheriffs Office on speed-dial and said I would go > ahead and call them for him since I had the number. To make a long story a > little shorter, the dispatcher misinterpreted the situation and put out a > call that there was a hostage situation with guns involved in our 55+ > retirement community. Within five minutes, we had three or four BSO squad > cars plus what appeared to be a S.W.A.T. team. I was able to talk to them > in the front yard, get them to holster their weapons, showed them my > Mental Health Employee badge, and gave them a brief synopsis of > LBD and " showtime " since all of this excitement would temporarily bring Dad > down to become the retired university professor again. He was sounding good > and Mom (his devoted wife of 63 years and having her own cognitive > deficits) didn't want to say anything in front of him, since she would have > to live with the consequences. The saving grace was that despite showtime, > Dad couldn't remember his birthday or where he was born. Thankfully, the > officers got permission to search the home " for safety reasons " , found all > of the weapons and ammunition, and made it real official that they had to > secure them until they could do a more complete investigation. They copied > all of the serial numbers, etc. and left Dad unarmed. He remembered that > until the end (he died in 2005 at age 90)and I would have done the same > thing, only sooner if I had been made aware of the loaded weapons. > Delusions and hallucinations: If they're not scary to your loved one, > don't medicate. We were fortunate in that my Dad's doctor was Dr. Barnea > who was licensed in both neurology and psychiatry. (He was one of the two > speakers at our first " Many Faces of Lewy Body Dementia " in January 2006. I > believe the video is still available on You Tube and through the LBDA > office in Atlanta.) We did end up using an HS low dose of Seroquel towards > the end along with Wellbutin for depression. (Add Haldol as one of the > medications Len is allergic to now, before he goes to an ER or sees another > doctor. I did with Dad and it prevented further complications.) > Support: You can never have too much! I got phone numbers from folks on > this list who I could call if I couldn't email, chat, text, etc. Three of > us started meeting for lunch once a month in south Florida. This turned > into a caregiver gathering in April of 2005, and that base turned into the > first LBD support group by the fall. The January meeting of the LBD support > group became a symposium with guest speakers, DVDs, etc. I'll bet that your > local Alz and Parkinson's support groups know some families with LBD or > PDD, plus we got referrals from neurologists, Meals on Wheels, senior day > care centers, etc. Rely on the ESH (Experience, Strength and Hope) from the > folks in this group, and then pay it forward. > May you find peace through knowledge on this journey. Namaste, Carol > > > -- Kate Knapp, OIT University of Minnesota You were born with certain gifts and talents. In kindergarten you were taught to share. The world needs all of the gifts it can get. Don’t be shy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Wow, Carol. Between your Dad's arsenal and the SWAT team, I think you have a " movie of the week. " It sure puts things into perspective. Weapons of any kind in the hands of someone with cognitive, emotional or mental concerns really frighten me. I have no problem with someone who knows what they are doing and can grasp the danger of a loaded weapon, having said weapon around - preferably unloaded. When you think about how common the situation probably is, well - I don't want to think about it! I love the idea about the car keys. I wish we'd had that idea 40 years ago when one of my grandparents kept driving though legally blind. His car became my car and there were so many dents in it that people gave me a wide berth on the highway. I was lucky. Mom stopped driving on her own and gave her car to her grandson as a grad school graduation gift. She asked often where her car was, but when we reminded her what a nice gift she had given Jon, she was more than satisfied. Again I was very lucky because Mom's hallucinations (no delusions that I know of) were fairly benign. Early on, I started talking with her, asking many questions, about them. I never tried to tell her that they weren't real and often asked if she had any idea why the particular person in the hallucination was visiting her. I'd also ask her to tell me about that person. I think that may have helped Mom deal with seeing people that others didn't. I think, comparatively, I probably had it easy compared to you and . I hope that, once in a while, you take stock and consider what you have gone through and what you have achieved just in making sure your dads haven't done anyone any harm. You have my admiration. Kate > ** > > > Hi , I haven't posted here in quite some time, so I guess it's time > to resurface. What you're going through with Len sounds so much like what I > faced with my Dad. Here are some of my lessons learned: > Keys: It was more important to have his own set of keys (symbol or > familiarity, it didn't matter) rather than to drive. Since my parents had > an old Ford Explorer, there were two keys: one for the doors and one for > the ignition. I just made sure his ignition key was " fixed " so it didn't > work. If he insists on driving, I would let his Dr notify the state agency > to revoke his driving privileges so you're not the bad guy. (She can blame > it on her supervisor or a state audit to maintain her rapport with Len.) > Guns: If you think they're a safety issue, they ARE. My dad had an > arsenal, plus swords, machetes and Bowie knives. My parents lived in their > own house across the street from me in south Florida. In 2004, my mom > called me one night because dad had a loaded pistol and she was afraid what > he might do (harm himself or someone else). My partner, a friend visiting > from LA who was a social worker and I went across the street to secure the > weapon. Dad said he was going to call 911 since we were stealing his > pistol. Since I worked in the mental health field, I had the non-emergency > number for the Broward Sheriffs Office on speed-dial and said I would go > ahead and call them for him since I had the number. To make a long story a > little shorter, the dispatcher misinterpreted the situation and put out a > call that there was a hostage situation with guns involved in our 55+ > retirement community. Within five minutes, we had three or four BSO squad > cars plus what appeared to be a S.W.A.T. team. I was able to talk to them > in the front yard, get them to holster their weapons, showed them my > Mental Health Employee badge, and gave them a brief synopsis of > LBD and " showtime " since all of this excitement would temporarily bring Dad > down to become the retired university professor again. He was sounding good > and Mom (his devoted wife of 63 years and having her own cognitive > deficits) didn't want to say anything in front of him, since she would have > to live with the consequences. The saving grace was that despite showtime, > Dad couldn't remember his birthday or where he was born. Thankfully, the > officers got permission to search the home " for safety reasons " , found all > of the weapons and ammunition, and made it real official that they had to > secure them until they could do a more complete investigation. They copied > all of the serial numbers, etc. and left Dad unarmed. He remembered that > until the end (he died in 2005 at age 90)and I would have done the same > thing, only sooner if I had been made aware of the loaded weapons. > Delusions and hallucinations: If they're not scary to your loved one, > don't medicate. We were fortunate in that my Dad's doctor was Dr. Barnea > who was licensed in both neurology and psychiatry. (He was one of the two > speakers at our first " Many Faces of Lewy Body Dementia " in January 2006. I > believe the video is still available on You Tube and through the LBDA > office in Atlanta.) We did end up using an HS low dose of Seroquel towards > the end along with Wellbutin for depression. (Add Haldol as one of the > medications Len is allergic to now, before he goes to an ER or sees another > doctor. I did with Dad and it prevented further complications.) > Support: You can never have too much! I got phone numbers from folks on > this list who I could call if I couldn't email, chat, text, etc. Three of > us started meeting for lunch once a month in south Florida. This turned > into a caregiver gathering in April of 2005, and that base turned into the > first LBD support group by the fall. The January meeting of the LBD support > group became a symposium with guest speakers, DVDs, etc. I'll bet that your > local Alz and Parkinson's support groups know some families with LBD or > PDD, plus we got referrals from neurologists, Meals on Wheels, senior day > care centers, etc. Rely on the ESH (Experience, Strength and Hope) from the > folks in this group, and then pay it forward. > May you find peace through knowledge on this journey. Namaste, Carol > > > -- Kate Knapp, OIT University of Minnesota You were born with certain gifts and talents. In kindergarten you were taught to share. The world needs all of the gifts it can get. Don’t be shy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Wow, Carol. Between your Dad's arsenal and the SWAT team, I think you have a " movie of the week. " It sure puts things into perspective. Weapons of any kind in the hands of someone with cognitive, emotional or mental concerns really frighten me. I have no problem with someone who knows what they are doing and can grasp the danger of a loaded weapon, having said weapon around - preferably unloaded. When you think about how common the situation probably is, well - I don't want to think about it! I love the idea about the car keys. I wish we'd had that idea 40 years ago when one of my grandparents kept driving though legally blind. His car became my car and there were so many dents in it that people gave me a wide berth on the highway. I was lucky. Mom stopped driving on her own and gave her car to her grandson as a grad school graduation gift. She asked often where her car was, but when we reminded her what a nice gift she had given Jon, she was more than satisfied. Again I was very lucky because Mom's hallucinations (no delusions that I know of) were fairly benign. Early on, I started talking with her, asking many questions, about them. I never tried to tell her that they weren't real and often asked if she had any idea why the particular person in the hallucination was visiting her. I'd also ask her to tell me about that person. I think that may have helped Mom deal with seeing people that others didn't. I think, comparatively, I probably had it easy compared to you and . I hope that, once in a while, you take stock and consider what you have gone through and what you have achieved just in making sure your dads haven't done anyone any harm. You have my admiration. Kate > ** > > > Hi , I haven't posted here in quite some time, so I guess it's time > to resurface. What you're going through with Len sounds so much like what I > faced with my Dad. Here are some of my lessons learned: > Keys: It was more important to have his own set of keys (symbol or > familiarity, it didn't matter) rather than to drive. Since my parents had > an old Ford Explorer, there were two keys: one for the doors and one for > the ignition. I just made sure his ignition key was " fixed " so it didn't > work. If he insists on driving, I would let his Dr notify the state agency > to revoke his driving privileges so you're not the bad guy. (She can blame > it on her supervisor or a state audit to maintain her rapport with Len.) > Guns: If you think they're a safety issue, they ARE. My dad had an > arsenal, plus swords, machetes and Bowie knives. My parents lived in their > own house across the street from me in south Florida. In 2004, my mom > called me one night because dad had a loaded pistol and she was afraid what > he might do (harm himself or someone else). My partner, a friend visiting > from LA who was a social worker and I went across the street to secure the > weapon. Dad said he was going to call 911 since we were stealing his > pistol. Since I worked in the mental health field, I had the non-emergency > number for the Broward Sheriffs Office on speed-dial and said I would go > ahead and call them for him since I had the number. To make a long story a > little shorter, the dispatcher misinterpreted the situation and put out a > call that there was a hostage situation with guns involved in our 55+ > retirement community. Within five minutes, we had three or four BSO squad > cars plus what appeared to be a S.W.A.T. team. I was able to talk to them > in the front yard, get them to holster their weapons, showed them my > Mental Health Employee badge, and gave them a brief synopsis of > LBD and " showtime " since all of this excitement would temporarily bring Dad > down to become the retired university professor again. He was sounding good > and Mom (his devoted wife of 63 years and having her own cognitive > deficits) didn't want to say anything in front of him, since she would have > to live with the consequences. The saving grace was that despite showtime, > Dad couldn't remember his birthday or where he was born. Thankfully, the > officers got permission to search the home " for safety reasons " , found all > of the weapons and ammunition, and made it real official that they had to > secure them until they could do a more complete investigation. They copied > all of the serial numbers, etc. and left Dad unarmed. He remembered that > until the end (he died in 2005 at age 90)and I would have done the same > thing, only sooner if I had been made aware of the loaded weapons. > Delusions and hallucinations: If they're not scary to your loved one, > don't medicate. We were fortunate in that my Dad's doctor was Dr. Barnea > who was licensed in both neurology and psychiatry. (He was one of the two > speakers at our first " Many Faces of Lewy Body Dementia " in January 2006. I > believe the video is still available on You Tube and through the LBDA > office in Atlanta.) We did end up using an HS low dose of Seroquel towards > the end along with Wellbutin for depression. (Add Haldol as one of the > medications Len is allergic to now, before he goes to an ER or sees another > doctor. I did with Dad and it prevented further complications.) > Support: You can never have too much! I got phone numbers from folks on > this list who I could call if I couldn't email, chat, text, etc. Three of > us started meeting for lunch once a month in south Florida. This turned > into a caregiver gathering in April of 2005, and that base turned into the > first LBD support group by the fall. The January meeting of the LBD support > group became a symposium with guest speakers, DVDs, etc. I'll bet that your > local Alz and Parkinson's support groups know some families with LBD or > PDD, plus we got referrals from neurologists, Meals on Wheels, senior day > care centers, etc. Rely on the ESH (Experience, Strength and Hope) from the > folks in this group, and then pay it forward. > May you find peace through knowledge on this journey. Namaste, Carol > > > -- Kate Knapp, OIT University of Minnesota You were born with certain gifts and talents. In kindergarten you were taught to share. The world needs all of the gifts it can get. Don’t be shy. Quote Link to comment Share on other sites More sharing options...
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