Guest guest Posted June 2, 2007 Report Share Posted June 2, 2007 For at least a limited time, you can read the whole paper here: http://ajp.psychiatryonline.org/cgi/content/full/164/6/910 What I find *REALLY* interesting is that the drug status of these patients wasn't examined. I think there's a perception in long-term care that the cholinesterase inhibitors and the NMDA drug are " useless " in late-stage AD, for starters. They also get *VERY* happy with the antipsychotics, which is associated with decline and mortality in the demented. I can't believe they didn't attempt to control for those factors. Here's my wacky hypothesis - those who were using more adult day services have more-involved family members who were encouraging the use of adult day, and are more involved in the patient care decisions after the LTC placement. Just a hunch, but the study doesn't provide enough data to make that clear or rule it out. E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2007 Report Share Posted June 2, 2007 Hello to everyone. I'm new to this group and dont usually write in these groups but I read alot of the mail to get information. My name is and I recently retired from Law Enforcement and went back to school. Last year I met a very nice family who were having trouble with their 57 year old brother who is also a retired police officer. He also got a masters degree in social work and worked many years with children and adolesents. He was a genius and from what I have learned he was a great humanitarian, loved kids and was a real people person. He is now just a shadow of the person he once was but he is still a good guy deserving assistance. Anyway he came down with LBD a couple of years ago but the symptoms were there a few years prior to that. How I came into the picture was that they tried to get him to go to an adult daycare and he would not do it. It scared him. So I agreed to start spending time with him during the days and we grew to be good friends and he feels safe with me around which helped with his paranoia. And he now thinks I am his brother. His sisters were doing everything they could to try and help him and still live their lives and it got too much to handle. They cant afford In Treatment anywhere and he hasnt done anything to be committed, and from what I hear he is too young to go into a nursing home environment or assisted Iiving without them having to pay an exorbant amount of money. And from my experience in Police work and working at a treatment facility for five years, I agree that being in a Nursing Home away from family is what makes their decline in life accelerate. I personally think they lose hope and thats not what we want for Homer. My role increased to staying with Homer 24 hours a day after he fell one day a few months back. He was ok, but nobody could tell us what was making him fall. I thought it was a TIA or a stroke or a seizure but no one can tell us for sure. Homer is a strong guy and really hasnt shown the parkinsons effects of the disease. But some days the right side of his face will lose all expression and form and I think its a stroke but the next day he is fine. But there are a lot of things that we cant figure out or know why he does the things he does. And I thought maybe some of you who have had more experience with this could help. Some of the things he does is that he wanders continuously, leaving the house and we have to go find him. And on some occasions he walks into neighbors houses without being asked. Luckily, he lives in a great neighborhood and all the neighbors know of his ailment and are very supportive and helpful. But the constant wandering goes on night and day. Also he will not sleep for any period of time and goes days walking around like a zombie. Just exhausted. We started giving him benadryl a few months back to help him sleep but it doesnt work and I think that may be whats making him faint and fall. And Ive also read recently that others are having bad side effects from the diphenhydramine also. So his doctor put him on Trazadone for sleep and it seems to working. He also takes reperidol. He doesnt make sense when he talks which is expected with dementia along with hallucinations, but he has good days where he is almost normal and then days where its real bad. He fell again the other day and I think it was a seizure. When he falls he knocks himself out cold and we have to send him to the ER via EMS. But they always send him back rather quickly saying he is ok. Its like nobody knows what is causing this and nobody is giving the family any advice to help. In my younger years I worked as an activity therapist at an In Treatment facility and we worked with Alzheimers patients and it seemed that by getting them outside and doing things it prolonged their lives or at least improved the quality of life for them. So thats the approach we are taking. But here lately he is declining more rapidly. Some of the things that maybe some of you may be able to give advice for are as follows. He talks very vulgar on some days saying very inappropriate things, He constantly sneaks away from the house and I often find him urinating in alleyways or in neighbors front yards. When he goes on his walks he inevitably takes things that are not his and brings them home, like balls, newspapers, and anything he can get in his pockets and yes we've had several talks with the police who usually are not very understanding. At the end of the day we have to go through all his pockets and retrieve all the things he has accumulated throughout the day. Also several times a day he will go in his room and put all his clothes on and usually wears his underwear on the outside of his clothes and sneaks out of the house. I understand that he needs constant re-direction and we are ok with that. Its like he gets into a loop where he does the same thing over and over and I curb that by taking him out of the current enviorment he is in and get him away for a while. But it starts up when we get him back home. He was violent for a while and has gotten very angry with me at times, but that is starting to go away. May be something to do with the fact that I'm 6'5 " and 260 lbs, ha. He also gets up at night and fills all the drinking glasses in the kitchen with water and sets them on furniture and shelves all over the house. His life revolves around eating and thats a good thing because he is losing weight very rapidly. But he is still physically strong. But we're starting to have problems with getting him to eat. Some of the things I do is to take him on long rides in the country or down to a lake where we walk and thats when he does the best and is happy. But when I try to get him to do any cognitive things like reading or doing simple kids games he gets very frustrated. I try to do things where he will have to think but thats not working so we just rely on the nature walks. Anyway I just needed to vent and I apologize for the length of the email, but if anyone else is experiencing this type of behavior or if anyone has any kind of advice we would appreciate the input. If not then thanks for listening. epthompson wrote: For at least a limited time, you can read the whole paper here: http://ajp.psychiatryonline.org/cgi/content/full/164/6/910 What I find *REALLY* interesting is that the drug status of these patients wasn't examined. I think there's a perception in long-term care that the cholinesterase inhibitors and the NMDA drug are " useless " in late-stage AD, for starters. They also get *VERY* happy with the antipsychotics, which is associated with decline and mortality in the demented. I can't believe they didn't attempt to control for those factors. Here's my wacky hypothesis - those who were using more adult day services have more-involved family members who were encouraging the use of adult day, and are more involved in the patient care decisions after the LTC placement. Just a hunch, but the study doesn't provide enough data to make that clear or rule it out. E --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2007 Report Share Posted June 2, 2007 : Your letter has so many things in it that point directly to the symptoms of LBD. This man is so young to have this horrible disease start. The falling, wandering, sometimes vulgarity or sexual talk/acts, not being able to put clothing on correctly, eating but losing weight, lots of time they want lots of sugar, not sleeping, urinating wherever, not making sense when he talks. All are symptoms that either my husband had or that I have read of many of others having. I am wondering if the Respridol is causing some problems. It has caused a lot of trouble for many on this site, and my husband did not do well on it. It is considered an antipsychotic (neuroleptic) drug and is on the LBD list of drugs not to use. Have you looked into getting him on Medicaid? If he doesn't have many assets and is no longer able to work, he should be eligible even if he isn't that old. He also should be able to take SS disability, which I don't think would be hard to prove in his present condition. Does he have any family of his own, or is it just his siblings? I assume he doesn't, or you wouldn't be the main caregiver. Anyway, you might explore the above possibilities to see if you can get some kind of help. It probably won't be long before he will need full-time care if he is advancing as rapidly as it appears he is. You are to be commended for taking on this caregiving responsibility. It is an extremely hard task, and it is great that you are willing to do it. However, caregivers have to be careful in that they can get ill themselves if under too much stress. Anyway, I think you are probably dealing with a classic case of LBD. If you have not seen the " Phases of LBD " that was compiled by the Caring Spouses group but is on this site, scroll down to the bottom of the page and click on the LBD site; then you can find it in the " Files " section (I believe; if this is wrong, someone else correct it.) It tells of the various symptoms that are common to LBD and kind of when they develop, although they can be in different order for different persons. It is not a " bonafide " medical document but compiled from the caregivers' experiences and should be used only for reference. Good luck, and keep the group apprised of what develops for him. June (Husband Darrell dx'd with AD 1999; probable LBD 2006; died November 2006; autopsy showed both AD and LBD as well as a possible aneurysm). --- Baucum wrote: > Hello to everyone. I'm new to this group and dont > usually write in these groups but I read alot of the > mail to get information. My name is and I > recently retired from Law Enforcement and went back > to school. Last year I met a very nice family who > were having trouble with their 57 year old brother > who is also a retired police officer. He also got a > masters degree in social work and worked many years > with children and adolesents. He was a genius and > from what I have learned he was a great > humanitarian, loved kids and was a real people > person. He is now just a shadow of the person he > once was but he is still a good guy deserving > assistance. Anyway he came down with LBD a couple > of years ago but the symptoms were there a few years > prior to that. How I came into the picture was that > they tried to get him to go to an adult daycare and > he would not do it. It scared him. So I agreed to > start spending time with him during the days and we > grew to be good friends and he > feels safe with me around which helped with his > paranoia. And he now thinks I am his brother. His > sisters were doing everything they could to try and > help him and still live their lives and it got too > much to handle. They cant afford In Treatment > anywhere and he hasnt done anything to be committed, > and from what I hear he is too young to go into a > nursing home environment or assisted Iiving without > them having to pay an exorbant amount of money. And > from my experience in Police work and working at a > treatment facility for five years, I agree that > being in a Nursing Home away from family is what > makes their decline in life accelerate. I > personally think they lose hope and thats not what > we want for Homer. My role increased to staying > with Homer 24 hours a day after he fell one day a > few months back. He was ok, but nobody could tell > us what was making him fall. I thought it was a TIA > or a stroke or a seizure but no one can tell us for > sure. Homer is a strong guy and > really hasnt shown the parkinsons effects of the > disease. But some days the right side of his face > will lose all expression and form and I think its a > stroke but the next day he is fine. But there are > a lot of things that we cant figure out or know why > he does the things he does. And I thought maybe > some of you who have had more experience with this > could help. Some of the things he does is that he > wanders continuously, leaving the house and we have > to go find him. And on some occasions he walks into > neighbors houses without being asked. Luckily, he > lives in a great neighborhood and all the neighbors > know of his ailment and are very supportive and > helpful. But the constant wandering goes on night > and day. Also he will not sleep for any period of > time and goes days walking around like a zombie. > Just exhausted. We started giving him benadryl a > few months back to help him sleep but it doesnt work > and I think that may be whats making him faint and > fall. And Ive also > read recently that others are having bad side > effects from the diphenhydramine also. So his doctor > put him on Trazadone for sleep and it seems to > working. He also takes reperidol. He doesnt make > sense when he talks which is expected with dementia > along with hallucinations, but he has good days > where he is almost normal and then days where its > real bad. He fell again the other day and I think it > was a seizure. When he falls he knocks himself out > cold and we have to send him to the ER via EMS. But > they always send him back rather quickly saying he > is ok. Its like nobody knows what is causing this > and nobody is giving the family any advice to help. > In my younger years I worked as an activity > therapist at an In Treatment facility and we worked > with Alzheimers patients and it seemed that by > getting them outside and doing things it prolonged > their lives or at least improved the quality of life > for them. So thats the approach we are taking. But > here lately he is declining > more rapidly. Some of the things that maybe some > of you may be able to give advice for are as > follows. He talks very vulgar on some days saying > very inappropriate things, He constantly sneaks > away from the house and I often find him urinating > in alleyways or in neighbors front yards. When he > goes on his walks he inevitably takes things that > are not his and brings them home, like balls, > newspapers, and anything he can get in his pockets > and yes we've had several talks with the police who > usually are not very understanding. At the end of > the day we have to go through all his pockets and > retrieve all the things he has accumulated > throughout the day. Also several times a day he > will go in his room and put all his clothes on and > usually wears his underwear on the outside of his > clothes and sneaks out of the house. I understand > that he needs constant re-direction and we are ok > with that. Its like he gets into a loop where he > does the same thing over and over and I curb > that by taking him out of the current enviorment he > is in and get him away for a while. But it starts > up when we get him back home. He was violent for a > while and has gotten very angry with me at times, > but that is starting to go away. May be something to > do with the fact that I'm 6'5 " and 260 lbs, ha. He > also gets up at night and fills all the drinking > glasses in the kitchen with water and sets them on > furniture and shelves all over the house. His life > revolves around eating and thats a good thing > because he is losing weight very rapidly. But he is > still physically strong. But we're starting to have > problems with getting him to eat. Some of the > things I do is to take him on long rides in the > country or down to a lake where we walk and thats > when he does the best and is happy. But when I try > to get him to do any cognitive things like reading > or doing simple kids games he gets very frustrated. > I try to do things where he will have to think but > thats not working so > we just rely on the nature walks. Anyway I just > needed to vent and I apologize for the length of the > email, but if anyone else is experiencing this type > of behavior or if anyone has any kind of advice we > would appreciate the input. If not then thanks for > listening. > epthompson wrote: > For at least a limited time, you can read > the whole paper here: > > http://ajp.psychiatryonline.org/cgi/content/full/164/6/910 > > What I find *REALLY* interesting is that the drug > status of these > patients wasn't examined. I think there's a > perception in long-term > care that the cholinesterase inhibitors and the NMDA > drug are > " useless " in late-stage AD, for starters. They also > get *VERY* happy > with the antipsychotics, which is associated with > decline and > mortality in the demented. I can't believe they > didn't attempt to > control for those factors. > > Here's my wacky hypothesis - those who were using > more adult day > services have more-involved family members who were > encouraging the > use of adult day, and are more involved in the > patient care decisions > after the LTC placement. Just a hunch, but the study > doesn't provide > enough data to make that clear or rule it out. > > E > > > > > > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's > economy) at Yahoo! Games. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ 8:00? 8:25? 8:40? Find a flick in no time with the Yahoo! 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Guest guest Posted June 2, 2007 Report Share Posted June 2, 2007 The “fainting”/passing out/seizures thing sounds like autonomic dysfunction…. The brain doesn’t control the bodily functions well, like heartbeat, temperature, blood pressure…. So maybe his BP is dropping, causing the faint – and it comes back when they check him in the hospital? E-thinking out loud! HTH, Debbie in SoCal _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Baucum Sent: Saturday, June 02, 2007 2:38 PM To: LBDcaregivers Subject: Re: Re: Nursing Homes Can Accelerate Alzheimer's Decline Hello to everyone. I'm new to this group and dont usually write in these groups but I read alot of the mail to get information. My name is and I recently retired from Law Enforcement and went back to school. Last year I met a very nice family who were having trouble with their 57 year old brother who is also a retired police officer. He also got a masters degree in social work and worked many years with children and adolesents. He was a genius and from what I have learned he was a great humanitarian, loved kids and was a real people person. He is now just a shadow of the person he once was but he is still a good guy deserving assistance. Anyway he came down with LBD a couple of years ago but the symptoms were there a few years prior to that. How I came into the picture was that they tried to get him to go to an adult daycare and he would not do it. It scared him. So I agreed to start spending time with him during the days and we grew to be good friends and he feels safe with me around which helped with his paranoia. And he now thinks I am his brother. His sisters were doing everything they could to try and help him and still live their lives and it got too much to handle. They cant afford In Treatment anywhere and he hasnt done anything to be committed, and from what I hear he is too young to go into a nursing home environment or assisted Iiving without them having to pay an exorbant amount of money. And from my experience in Police work and working at a treatment facility for five years, I agree that being in a Nursing Home away from family is what makes their decline in life accelerate. I personally think they lose hope and thats not what we want for Homer. My role increased to staying with Homer 24 hours a day after he fell one day a few months back. He was ok, but nobody could tell us what was making him fall. I thought it was a TIA or a stroke or a seizure but no one can tell us for sure. Homer is a strong guy and really hasnt shown the parkinsons effects of the disease. But some days the right side of his face will lose all expression and form and I think its a stroke but the next day he is fine. But there are a lot of things that we cant figure out or know why he does the things he does. And I thought maybe some of you who have had more experience with this could help. Some of the things he does is that he wanders continuously, leaving the house and we have to go find him. And on some occasions he walks into neighbors houses without being asked. Luckily, he lives in a great neighborhood and all the neighbors know of his ailment and are very supportive and helpful. But the constant wandering goes on night and day. Also he will not sleep for any period of time and goes days walking around like a zombie. Just exhausted. We started giving him benadryl a few months back to help him sleep but it doesnt work and I think that may be whats making him faint and fall. And Ive also read recently that others are having bad side effects from the diphenhydramine also. So his doctor put him on Trazadone for sleep and it seems to working. He also takes reperidol. He doesnt make sense when he talks which is expected with dementia along with hallucinations, but he has good days where he is almost normal and then days where its real bad. He fell again the other day and I think it was a seizure. When he falls he knocks himself out cold and we have to send him to the ER via EMS. But they always send him back rather quickly saying he is ok. Its like nobody knows what is causing this and nobody is giving the family any advice to help. In my younger years I worked as an activity therapist at an In Treatment facility and we worked with Alzheimers patients and it seemed that by getting them outside and doing things it prolonged their lives or at least improved the quality of life for them. So thats the approach we are taking. But here lately he is declining more rapidly. Some of the things that maybe some of you may be able to give advice for are as follows. He talks very vulgar on some days saying very inappropriate things, He constantly sneaks away from the house and I often find him urinating in alleyways or in neighbors front yards. When he goes on his walks he inevitably takes things that are not his and brings them home, like balls, newspapers, and anything he can get in his pockets and yes we've had several talks with the police who usually are not very understanding. At the end of the day we have to go through all his pockets and retrieve all the things he has accumulated throughout the day. Also several times a day he will go in his room and put all his clothes on and usually wears his underwear on the outside of his clothes and sneaks out of the house. I understand that he needs constant re-direction and we are ok with that. Its like he gets into a loop where he does the same thing over and over and I curb that by taking him out of the current enviorment he is in and get him away for a while. But it starts up when we get him back home. He was violent for a while and has gotten very angry with me at times, but that is starting to go away. May be something to do with the fact that I'm 6'5 " and 260 lbs, ha. He also gets up at night and fills all the drinking glasses in the kitchen with water and sets them on furniture and shelves all over the house. His life revolves around eating and thats a good thing because he is losing weight very rapidly. But he is still physically strong. But we're starting to have problems with getting him to eat. Some of the things I do is to take him on long rides in the country or down to a lake where we walk and thats when he does the best and is happy. But when I try to get him to do any cognitive things like reading or doing simple kids games he gets very frustrated. I try to do things where he will have to think but thats not working so we just rely on the nature walks. Anyway I just needed to vent and I apologize for the length of the email, but if anyone else is experiencing this type of behavior or if anyone has any kind of advice we would appreciate the input. If not then thanks for listening. epthompson <ericbls@spintellige <mailto:ericbls%40spintelligentlabs.com> ntlabs.com> wrote: For at least a limited time, you can read the whole paper here: http://ajp.psychiat <http://ajp.psychiatryonline.org/cgi/content/full/164/6/910> ryonline.org/cgi/content/full/164/6/910 What I find *REALLY* interesting is that the drug status of these patients wasn't examined. I think there's a perception in long-term care that the cholinesterase inhibitors and the NMDA drug are " useless " in late-stage AD, for starters. They also get *VERY* happy with the antipsychotics, which is associated with decline and mortality in the demented. I can't believe they didn't attempt to control for those factors. Here's my wacky hypothesis - those who were using more adult day services have more-involved family members who were encouraging the use of adult day, and are more involved in the patient care decisions after the LTC placement. Just a hunch, but the study doesn't provide enough data to make that clear or rule it out. E --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 , I wish i had some words of wisdom. It sounds like you are already doing your best LBD is so un predictable, decline on some is very quickly and loss of weight is sometimes not a good sign as far as comparing to other cases similar. From talking to many nurses on LBD. I think we can only show them we care, but so far no cure for this horrible disease. We all try to be supportive and hear you out anytime you want to vent. Wish i had the answer. Give us update as soon as you can. Maggie --- Baucum wrote: > Hello to everyone. I'm new to this group and dont > usually write in these groups but I read alot of the > mail to get information. My name is and I > recently retired from Law Enforcement and went back > to school. Last year I met a very nice family who > were having trouble with their 57 year old brother > who is also a retired police officer. He also got a > masters degree in social work and worked many years > with children and adolesents. He was a genius and > from what I have learned he was a great > humanitarian, loved kids and was a real people > person. He is now just a shadow of the person he > once was but he is still a good guy deserving > assistance. Anyway he came down with LBD a couple > of years ago but the symptoms were there a few years > prior to that. How I came into the picture was that > they tried to get him to go to an adult daycare and > he would not do it. It scared him. So I agreed to > start spending time with him during the days and we > grew to be good friends and he > feels safe with me around which helped with his > paranoia. And he now thinks I am his brother. His > sisters were doing everything they could to try and > help him and still live their lives and it got too > much to handle. They cant afford In Treatment > anywhere and he hasnt done anything to be committed, > and from what I hear he is too young to go into a > nursing home environment or assisted Iiving without > them having to pay an exorbant amount of money. And > from my experience in Police work and working at a > treatment facility for five years, I agree that > being in a Nursing Home away from family is what > makes their decline in life accelerate. I > personally think they lose hope and thats not what > we want for Homer. My role increased to staying > with Homer 24 hours a day after he fell one day a > few months back. He was ok, but nobody could tell > us what was making him fall. I thought it was a TIA > or a stroke or a seizure but no one can tell us for > sure. Homer is a strong guy and > really hasnt shown the parkinsons effects of the > disease. But some days the right side of his face > will lose all expression and form and I think its a > stroke but the next day he is fine. But there are > a lot of things that we cant figure out or know why > he does the things he does. And I thought maybe > some of you who have had more experience with this > could help. Some of the things he does is that he > wanders continuously, leaving the house and we have > to go find him. And on some occasions he walks into > neighbors houses without being asked. Luckily, he > lives in a great neighborhood and all the neighbors > know of his ailment and are very supportive and > helpful. But the constant wandering goes on night > and day. Also he will not sleep for any period of > time and goes days walking around like a zombie. > Just exhausted. We started giving him benadryl a > few months back to help him sleep but it doesnt work > and I think that may be whats making him faint and > fall. And Ive also > read recently that others are having bad side > effects from the diphenhydramine also. So his doctor > put him on Trazadone for sleep and it seems to > working. He also takes reperidol. He doesnt make > sense when he talks which is expected with dementia > along with hallucinations, but he has good days > where he is almost normal and then days where its > real bad. He fell again the other day and I think it > was a seizure. When he falls he knocks himself out > cold and we have to send him to the ER via EMS. But > they always send him back rather quickly saying he > is ok. Its like nobody knows what is causing this > and nobody is giving the family any advice to help. > In my younger years I worked as an activity > therapist at an In Treatment facility and we worked > with Alzheimers patients and it seemed that by > getting them outside and doing things it prolonged > their lives or at least improved the quality of life > for them. So thats the approach we are taking. But > here lately he is declining > more rapidly. Some of the things that maybe some > of you may be able to give advice for are as > follows. He talks very vulgar on some days saying > very inappropriate things, He constantly sneaks > away from the house and I often find him urinating > in alleyways or in neighbors front yards. When he > goes on his walks he inevitably takes things that > are not his and brings them home, like balls, > newspapers, and anything he can get in his pockets > and yes we've had several talks with the police who > usually are not very understanding. At the end of > the day we have to go through all his pockets and > retrieve all the things he has accumulated > throughout the day. Also several times a day he > will go in his room and put all his clothes on and > usually wears his underwear on the outside of his > clothes and sneaks out of the house. I understand > that he needs constant re-direction and we are ok > with that. Its like he gets into a loop where he > does the same thing over and over and I curb > that by taking him out of the current enviorment he > is in and get him away for a while. But it starts > up when we get him back home. He was violent for a > while and has gotten very angry with me at times, > but that is starting to go away. May be something to > do with the fact that I'm 6'5 " and 260 lbs, ha. He > also gets up at night and fills all the drinking > glasses in the kitchen with water and sets them on > furniture and shelves all over the house. His life > revolves around eating and thats a good thing > because he is losing weight very rapidly. But he is > still physically strong. But we're starting to have > problems with getting him to eat. Some of the > things I do is to take him on long rides in the > country or down to a lake where we walk and thats > when he does the best and is happy. But when I try > to get him to do any cognitive things like reading > or doing simple kids games he gets very frustrated. > I try to do things where he will have to think but > thats not working so > we just rely on the nature walks. Anyway I just > needed to vent and I apologize for the length of the > email, but if anyone else is experiencing this type > of behavior or if anyone has any kind of advice we > would appreciate the input. If not then thanks for > listening. > epthompson wrote: > For at least a limited time, you can read > the whole paper here: > > http://ajp.psychiatryonline.org/cgi/content/full/164/6/910 > > What I find *REALLY* interesting is that the drug > status of these > patients wasn't examined. I think there's a > perception in long-term > care that the cholinesterase inhibitors and the NMDA > drug are > " useless " in late-stage AD, for starters. They also > get *VERY* happy > with the antipsychotics, which is associated with > decline and > mortality in the demented. I can't believe they > didn't attempt to > control for those factors. > > Here's my wacky hypothesis - those who were using > more adult day > services have more-involved family members who were > encouraging the > use of adult day, and are more involved in the > patient care decisions > after the LTC placement. Just a hunch, but the study > doesn't provide > enough data to make that clear or rule it out. > > E > > > > > > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's > economy) at Yahoo! Games. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Shape Yahoo! in your own image. 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Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 Good thinking ! That's true. Had to request numerous times that my mom receive Exelon once she moved into the NH. Their first response was " no " (basically, what's the point.) At least mom's NH wasn't pill happy -- but know other places that were, e.g. the hospital where my mom was for observation and received the antipsychotic + numerous other meds. Good point you've made! > > For at least a limited time, you can read the whole paper here: > > http://ajp.psychiatryonline.org/cgi/content/full/164/6/910 > > What I find *REALLY* interesting is that the drug status of these > patients wasn't examined. I think there's a perception in long-term > care that the cholinesterase inhibitors and the NMDA drug are > " useless " in late-stage AD, for starters. They also get *VERY* happy > with the antipsychotics, which is associated with decline and > mortality in the demented. I can't believe they didn't attempt to > control for those factors. > > Here's my wacky hypothesis - those who were using more adult day > services have more-involved family members who were encouraging the > use of adult day, and are more involved in the patient care decisions > after the LTC placement. Just a hunch, but the study doesn't provide > enough data to make that clear or rule it out. > > E > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 , In the " lists " below we have a special lock that I used with Mom. It is very safe as needs no key, but Mom couldn't open it. It is a " Guardian Lock " and they have them at Home Depot if you have one in your area. They cost about $20. each. They are very simple for most to work, but anyone with dementia can't figure out how to do it. Mom would try and give it up. That saved a lot on the wandering. It takes 4 simple screws to put it on if you have wood doors. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Re: Nursing Homes Can Accelerate Alzheimer's Decline Hello to everyone. I'm new to this group and dont usually write in these groups but I read alot of the mail to get information. My name is and I recently retired from Law Enforcement and went back to school. Last year I met a very nice family who were having trouble with their 57 year old brother who is also a retired police officer. He also got a masters degree in social work and worked many years with children and adolesents. He was a genius and from what I have learned he was a great humanitarian, loved kids and was a real people person. He is now just a shadow of the person he once was but he is still a good guy deserving assistance. Anyway he came down with LBD a couple of years ago but the symptoms were there a few years prior to that. How I came into the picture was that they tried to get him to go to an adult daycare and he would not do it. It scared him. So I agreed to start spending time with him during the days and we grew to be good friends and he feels safe with me around which helped with his paranoia. And he now thinks I am his brother. His sisters were doing everything they could to try and help him and still live their lives and it got too much to handle. They cant afford In Treatment anywhere and he hasnt done anything to be committed, and from what I hear he is too young to go into a nursing home environment or assisted Iiving without them having to pay an exorbant amount of money. And from my experience in Police work and working at a treatment facility for five years, I agree that being in a Nursing Home away from family is what makes their decline in life accelerate. I personally think they lose hope and thats not what we want for Homer. My role increased to staying with Homer 24 hours a day after he fell one day a few months back. He was ok, but nobody could tell us what was making him fall. I thought it was a TIA or a stroke or a seizure but no one can tell us for sure. Homer is a strong guy and really hasnt shown the parkinsons effects of the disease. But some days the right side of his face will lose all expression and form and I think its a stroke but the next day he is fine. But there are a lot of things that we cant figure out or know why he does the things he does. And I thought maybe some of you who have had more experience with this could help. Some of the things he does is that he wanders continuously, leaving the house and we have to go find him. And on some occasions he walks into neighbors houses without being asked. Luckily, he lives in a great neighborhood and all the neighbors know of his ailment and are very supportive and helpful. But the constant wandering goes on night and day. Also he will not sleep for any period of time and goes days walking around like a zombie. Just exhausted. We started giving him benadryl a few months back to help him sleep but it doesnt work and I think that may be whats making him faint and fall. And Ive also read recently that others are having bad side effects from the diphenhydramine also. So his doctor put him on Trazadone for sleep and it seems to working. He also takes reperidol. He doesnt make sense when he talks which is expected with dementia along with hallucinations, but he has good days where he is almost normal and then days where its real bad. He fell again the other day and I think it was a seizure. When he falls he knocks himself out cold and we have to send him to the ER via EMS. But they always send him back rather quickly saying he is ok. Its like nobody knows what is causing this and nobody is giving the family any advice to help In my younger years I worked as an activity therapist at an In Treatment facility and we worked with Alzheimers patients and it seemed that by getting them outside and doing things it prolonged their lives or at least improved the quality of life for them. So thats the approach we are taking. But here lately he is declining more rapidly. Some of the things that maybe some of you may be able to give advice for are as follows. He talks very vulgar on some days saying very inappropriate things, He constantly sneaks away from the house and I often find him urinating in alleyways or in neighbors front yards. When he goes on his walks he inevitably takes things that are not his and brings them home, like balls, newspapers, and anything he can get in his pockets and yes we've had several talks with the police who usually are not very understanding. At the end of the day we have to go through all his pockets and retrieve all the things he has accumulated throughout the day. Also several times a day he will go in his room and put all his clothes on and usually wears his underwear on the outside of his clothes and sneaks out of the house. I understand that he needs constant re-direction and we are ok with that. Its like he gets into a loop where he does the same thing over and over and I curb that by taking him out of the current enviorment he is in and get him away for a while. But it starts up when we get him back home. He was violent for a while and has gotten very angry with me at times, but that is starting to go away. May be something to do with the fact that I'm 6'5 " and 260 lbs, ha. He also gets up at night and fills all the drinking glasses in the kitchen with water and sets them on furniture and shelves all over the house. His life revolves around eating and thats a good thing because he is losing weight very rapidly. But he is still physically strong. But we're starting to have problems with getting him to eat. Some of the things I do is to take him on long rides in the country or down to a lake where we walk and thats when he does the best and is happy. But when I try to get him to do any cognitive things like reading or doing simple kids games he gets very frustrated. I try to do things where he will have to think but thats not working so we just rely on the nature walks. Anyway I just needed to vent and I apologize for the length of the email, but if anyone else is experiencing this type of behavior or if anyone has any kind of advice we would appreciate the input. If not then thanks for listening. epthompson wrote: For at least a limited time, you can read the whole paper here: http://ajp.psychiatryonline.org/cgi/content/full/164/6/910 What I find *REALLY* interesting is that the drug status of these patients wasn't examined. I think there's a perception in long-term care that the cholinesterase inhibitors and the NMDA drug are " useless " in late-stage AD, for starters. They also get *VERY* happy with the antipsychotics, which is associated with decline and mortality in the demented. I can't believe they didn't attempt to control for those factors. Here's my wacky hypothesis - those who were using more adult day services have more-involved family members who were encouraging the use of adult day, and are more involved in the patient care decisions after the LTC placement. Just a hunch, but the study doesn't provide enough data to make that clear or rule it out. E --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 , welcome to a home away from home. It's a great place to chat just as you have done. June has touched on just about everything I could have told you, except that I will put in my added thoughts about Riperdol. It nearly killed my husband in less than three weeks time. I weaned him off the medication, and found a good Doctor that knew LBD and how to treat it. We also went to the Alzheimer's association and got Safe Return bracelets. If your friend wonders away and someone finds him they can call the phone number on the bracelet, and the Alzheimer's Association will see that your family is called, and you can get your friend. Sometimes the police will bring him home. But, I would put safety locks on the doors when your friend is sleeping. The locks are not expensive, but he won't be able to get out. That would be a wise thing especially when he wonders at night, or if he may wonder off naked in the cold of winter. Boy howdy, you sure don't have a moment to relax with a job like yours, do you? And going to school? My daughter of 55 is going back to school full time, and she has a family at home. What some people won't do for punishment! (grin) More power to you. I have a daughter that teaches highschool and is working on her Ph.D. She is no spring chicken anymore herself, and has health problems. I'm too lazy. Do remember to care for yourself. I can't preach that enough, because I am nearly 75 and HAVE to take care of myself. Health problems can arise at any age. Have fun and just lay back in a cool shade, after you have created a job in the back yard. Like planting a few flowers. He will plant a while and dig them up for a while. Take care Imogene In a message dated 6/2/2007 6:55:15 PM Central Daylight Time, jbauc@... writes: Hello to everyone. I'm new to this group and dont usually write in these groups but I read alot of the mail to get information. My name is and I recently retired from Law Enforcement and went back to school. Last year I met a very nice family who were having trouble with their 57 year old brother who is also a retired police officer. He also got a masters degree in social work and worked many years with children and adolesents. He was a genius and from what I have learned he was a great humanitarian, loved kids and was a real people person. He is now just a shadow of the person he once was but he is still a good guy deserving assistance. Anyway he came down with LBD a couple of years ago but the symptoms were there a few years prior to that. How I came into the picture was that they tried to get him to go to an adult daycare and he would not do it. It scared him. So I agreed to start spending time with him during the days and we grew to be good friends and he feels safe with me around which helped with his paranoia. And he now thinks I am his brother. His sisters were doing everything they could to try and help him and still live their lives and it got too much to handle. They cant afford In Treatment anywhere and he hasnt done anything to be committed, and from what I hear he is too young to go into a nursing home environment or assisted Iiving without them having to pay an exorbant amount of money. And from my experience in Police work and working at a treatment facility for five years, I agree that being in a Nursing Home away from family is what makes their decline in life accelerate. I personally think they lose hope and thats not what we want for Homer. My role increased to staying with Homer 24 hours a day after he fell one day a few months back. He was ok, but nobody could tell us what was making him fall. I thought it was a TIA or a stroke or a seizure but no one can tell us for sure. Homer is a strong guy and really hasnt shown the parkinsons effects of the disease. But some days the right side of his face will lose all expression and form and I think its a stroke but the next day he is fine. But there are a lot of things that we cant figure out or know why he does the things he does. And I thought maybe some of you who have had more experience with this could help. Some of the things he does is that he wanders continuously, leaving the house and we have to go find him. And on some occasions he walks into neighbors houses without being asked. Luckily, he lives in a great neighborhood and all the neighbors know of his ailment and are very supportive and helpful. But the constant wandering goes on night and day. Also he will not sleep for any period of time and goes days walking around like a zombie. Just exhausted. We started giving him benadryl a few months back to help him sleep but it doesnt work and I think that may be whats making him faint and fall. And Ive also read recently that others are having bad side effects from the diphenhydramine also. So his doctor put him on Trazadone for sleep and it seems to working. He also takes reperidol. He doesnt make sense when he talks which is expected with dementia along with hallucinations, but he has good days where he is almost normal and then days where its real bad. He fell again the other day and I think it was a seizure. When he falls he knocks himself out cold and we have to send him to the ER via EMS. But they always send him back rather quickly saying he is ok. Its like nobody knows what is causing this and nobody is giving the family any advice to help. In my younger years I worked as an activity therapist at an In Treatment facility and we worked with Alzheimers patients and it seemed that by getting them outside and doing things it prolonged their lives or at least improved the quality of life for them. So thats the approach we are taking. But here lately he is declining more rapidly. Some of the things that maybe some of you may be able to give advice for are as follows. He talks very vulgar on some days saying very inappropriate things, He constantly sneaks away from the house and I often find him urinating in alleyways or in neighbors front yards. When he goes on his walks he inevitably takes things that are not his and brings them home, like balls, newspapers, and anything he can get in his pockets and yes we've had several talks with the police who usually are not very understanding. At the end of the day we have to go through all his pockets and retrieve all the things he has accumulated throughout the day. Also several times a day he will go in his room and put all his clothes on and usually wears his underwear on the outside of his clothes and sneaks out of the house. I understand that he needs constant re-direction and we are ok with that. Its like he gets into a loop where he does the same thing over and over and I curb that by taking him out of the current enviorment he is in and get him away for a while. But it starts up when we get him back home. He was violent for a while and has gotten very angry with me at times, but that is starting to go away. May be something to do with the fact that I'm 6'5 " and 260 lbs, ha. He also gets up at night and fills all the drinking glasses in the kitchen with water and sets them on furniture and shelves all over the house. His life revolves around eating and thats a good thing because he is losing weight very rapidly. But he is still physically strong. But we're starting to have problems with getting him to eat. Some of the things I do is to take him on long rides in the country or down to a lake where we walk and thats when he does the best and is happy. But when I try to get him to do any cognitive things like reading or doing simple kids games he gets very frustrated. I try to do things where he will have to think but thats not working so we just rely on the nature walks. Anyway I just needed to vent and I apologize for the length of the email, but if anyone else is experiencing this type of behavior or if anyone has any kind of advice we would appreciate the input. If not then thanks for listening. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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