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 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 16, 2012 Report Share Posted March 16, 2012 Judy,  Does Parkinson's or Alzheimer's cause the hallucinations, delusions, etc? Pamela Hutchins ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Tuesday, March 13, 2012 8:39 PM 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@... > 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 16, 2012 Report Share Posted March 16, 2012 Judy,  Does Parkinson's or Alzheimer's cause the hallucinations, delusions, etc? Pamela Hutchins ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Tuesday, March 13, 2012 8:39 PM 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@... > 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 16, 2012 Report Share Posted March 16, 2012 I agree . You probably should not do this alone, but have at least one family member with you to be a standby in case something goes wrong. They could also help you get the guns out of the house. Hide the extra set of keys where he would not be able to find, maybe an extra set with a magnet holder under the car. Pamela Hutchins ________________________________ To: LBDcaregivers Sent: Wednesday, March 14, 2012 8:29 AM Subject: Re: update from today , 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 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...
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