Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 Hi Jan, Welcome to this wonderful support group, you will find a wealth of information on dos and don'ts with medications and some related symptoms that we can identify with from time to time. Not all LBD LO's follow the same pattern of symptoms and there doesn't seem to be a set pattern to follow of stages. This disease is known as the " Beast " here, because it is very frustrating for all involved. It is a rollar coaster of emotions for the caregiver and of peeks, valleys and plateus for the LO. My husband was diagnosed with Parkinsons (which is really a parkinsonism, not the true Parkinsons) in 1992 and in October of 2003, he was diagnosed with LBD. The hallucinations and dementia started showing up around 2000. In my opinion he is at the beginning of the end stages. He is incontinent, can bearly walk and is in a wheelchair most of the time.He is more confused these days than lucid, although he surprises me at times and can be as clear as a bell in his thoughts. He has a hard time forming his words and is hard to understand from time to time. He misnames objects and at times forgets who I am. There are two of me many times. One is good and the other is bad. He talks to me in the third person telling me about me using my name. I am also Jan, so already we have some things in common. You will find over time things that you will need to do; like make sure you have a Durable Power of Attorney, you will start to run into things that can not be handled without a Durable POA, such as money issues, health issues to name a few. It will help you immensley if you have a caregiver or family support to give you a break once in awhile if you are the primary caregiver or you will start to breakdown. It's very important to keep your health and sanity and to take some time for yourself. As things come up that you are having to deal with, there is usually someone on this site that will have advice or a link to your needs or who is struggling with the same issues and can give you some information on how to get through it. Take Care Jan and keep in touch.......Jan Colello --- jan arendt wrote: > Thank you for accepting me into this group. My > husband has been diagnosed with LBD with > Parkinsonism. Any suggestions, help or " whatfors " > will be appreciated. Jan > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2004 Report Share Posted September 29, 2004 Hi to you also, Jan! I truly appreciate your taking time to write about your hubby and challenges of LBD. It sounds so similar to our situation, aside from the wheelchair. is still walking, but very unsteady. He is frequently unable to organize his words and " spit " them out correctly. Fortuneately we do have a good POA for health and finances and I am double checking this on Fri. with the person (or firm) that initially did our trust. We live in San Diego-have you tried any day care facilities? I have gone to 4 different ones that offer physical and occupational therapy and 2 meals per day-activities;they are for Medi-cal or $75/day private pay.. One seemed OK, but hard to see in the group. has no hobbies and sits on the couch most of the day. With help will get in bed at night, but calls out frequently and goes downstairs and sits on the couch. " Help me " and " I can't " are frequent phrases. He sleeps most of the time, I will need to get some respite, don't want to be a grouchy old resentful crab. I don't even like me when I get that way! I am very fortunate to have friends who come by, call, and that is helpful. is not a " people person " when well, and now is more " private " , unfriendly acting. He is depressed, but welbutrin, and other antidepressants tried, seemed to add to his confusion rather than help the situation. I apologize for rambling--thank you for the welcome and earlier advice. Jan A Re: Hi Jan A. Hi Jan, Welcome to this wonderful support group, you will find a wealth of information on dos and don'ts with medications and some related symptoms that we can identify with from time to time. Not all LBD LO's follow the same pattern of symptoms and there doesn't seem to be a set pattern to follow of stages. This disease is known as the " Beast " here, because it is very frustrating for all involved. It is a rollar coaster of emotions for the caregiver and of peeks, valleys and plateus for the LO. My husband was diagnosed with Parkinsons (which is really a parkinsonism, not the true Parkinsons) in 1992 and in October of 2003, he was diagnosed with LBD. The hallucinations and dementia started showing up around 2000. In my opinion he is at the beginning of the end stages. He is incontinent, can bearly walk and is in a wheelchair most of the time.He is more confused these days than lucid, although he surprises me at times and can be as clear as a bell in his thoughts. He has a hard time forming his words and is hard to understand from time to time. He misnames objects and at times forgets who I am. There are two of me many times. One is good and the other is bad. He talks to me in the third person telling me about me using my name. I am also Jan, so already we have some things in common. You will find over time things that you will need to do; like make sure you have a Durable Power of Attorney, you will start to run into things that can not be handled without a Durable POA, such as money issues, health issues to name a few. It will help you immensley if you have a caregiver or family support to give you a break once in awhile if you are the primary caregiver or you will start to breakdown. It's very important to keep your health and sanity and to take some time for yourself. As things come up that you are having to deal with, there is usually someone on this site that will have advice or a link to your needs or who is struggling with the same issues and can give you some information on how to get through it. Take Care Jan and keep in touch.......Jan Colello --- jan arendt wrote: > Thank you for accepting me into this group. My > husband has been diagnosed with LBD with > Parkinsonism. Any suggestions, help or " whatfors " > will be appreciated. Jan > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2004 Report Share Posted September 29, 2004 Hello again Jan, Our husbands do have some similar things going on. I have Jim use a walker at least once a day, so he doesn't atrophy, but he really can't walk without assistance. His feet stick to the floor and his legs shake and he pushes the walker way out in front of him. If I ask him to focus and take big steps he can do it, but on his own he walks on his toes with little steps and loses his balance. He pushes the walker into walls and furniture to stop it, so he can catch up to it. I hold the walker now and assist him, so the walker doesn't get away from him. We also live in California, in the San Francisco Bay Area. We are in Lafayette in the East Bay. I have Jim in a Day Program, which has physical therapy and occupational therapy and a lot of other stimulation. He only goes twice a week, Monday and Friday, because he does not have the stamina to make it through an entire week. He falls asleep after lunch at his program and misses the last half usually.They have a wonderful menu there that they serve, but Jim is a picky eater, so I have to pack his lunch for him every time he goes, except for one or two times within the month that he might like what they are serving. He goes from 10-3. He resists going a lot and mostly doesn't make it to his program. He calls it the " gym. " It becomes a power struggle to get him there and many times in his confussion he gets aggressive about it and it's not worth the fight to get him there. He has made it two weeks in a row straight if he goes this Friday. It will be a record! I have found that if I let him wake up on his own time, which is around 9AM and don't rush him to get ready, he is usually ok with it. We are about 15 min late in getting there, but it is better than not being there I think and it is ok with the staff that he is a little late. There is a bus that would pick him up at the house, but he won't get on it, so I drive him each time. All he does is sleep and watch TV at home and usually falls asleep in front of the TV too. He seems to think when I rush him that I am up to something; like going to have an affair. He is very delusional. Who has the time or energy for such a thing??!! Not that I'd even want to do such a thing. I also have a caregiver that comes on Tuesday and Thursday 10-2, so I do get some time on those days even if Jim doesn't go to his Day Program. But these days to myself are not always for rest I have to get outside routines done too; like grocery shopping, banking, car repairs or whatever. I have no family support. Jim's buddies all stopped showing up about a year ago, his last buddy to come visit even stopped coming. I have a male caregiver, so Jim gets some male company. I think he needs that. They like to watch the same movies on TV. War movies and Cowboys.... Wayne especially. I leave Jim at an Assisted Living Facility that has a dementia unit for a week each year and I take respite and go away. I have to leave plenty of snacks in his room, because he won't eat the food served most of the time at the facility. I usually go to Manzanillo, Mexico to visit a friend and her husband that retired and moved to LaPunta, a beautiful community there. I really was feeling " Cabin Fever " this summer, because I hadn't been away since last November and can't get away for even a weekend and since Jim does not travel well on distance anymore, I made reservations for a weekend, Fri- Sun. at a Hilton Hotel in our area, 7 mins. away from home, for Jim and me. It was the best thing I have thought of in a long time. I got the rest I needed. Jim had a TV and I was never out of his sight for him to keep yelling for me, since it is just a large bedroom we were in. I requested a Handicap Bathroom, so it was equipped for his needs. I got to swim and exercise and I ordered room service every morning. I didn't even have to make the bed. I was so rested after that weekend, I was ready to take anything on. I am going to make it a biannual thing to do now for my own sanity. I will take this trip to the Hilton every 6 months. Jim is on Sinemet and Seroquel only. I am trying to keep the medications at minimum, because of his high sensitivity to the medications and the struggles of adding new ones. He has been on Vicodin for restless legs, it deadens the feeling of the movements in his legs without making him grogy. It seems to work the best for him. We tried all kinds of things and most were a disaster. Even though Vicodin is addictive, it is the best of the two evils, the other evil being sleep deprived for Jim. And me, for having to be up with him all night. I hope you can find a way to get respite, because you need to do that for yourself. Take care................Jan C. --- jan arendt wrote: > Hi to you also, Jan! > I truly appreciate your taking time to write about > your hubby and challenges of LBD. It sounds so > similar to our situation, aside from the wheelchair. > is still walking, but very unsteady. He is > frequently unable to organize his words and " spit " > them out correctly. Fortuneately we do have a good > POA for health and finances and I am double checking > this on Fri. with the person (or firm) that > initially did our trust. We live in San Diego-have > you tried any day care facilities? I have gone to 4 > different ones that offer physical and occupational > therapy and 2 meals per day-activities;they are for > Medi-cal or $75/day private pay.. One seemed OK, > but hard to see in the group. has no > hobbies and sits on the couch most of the day. With > help will get in bed at night, but calls out > frequently and goes downstairs and sits on the > couch. " Help me " and " I can't " are frequent phrases. > He sleeps most of the time, I will need to get some > respite, don't want to be a grouchy old resentful > crab. I don't even like me when I get that way! I > am very fortunate to have friends who come by, call, > and that is helpful. is not a " people person " > when well, and now is more " private " , unfriendly > acting. He is depressed, but welbutrin, and other > antidepressants tried, seemed to add to his > confusion rather than help the situation. I > apologize for rambling--thank you for the welcome > and earlier advice. Jan A > Re: Hi Jan A. > > > Hi Jan, > Welcome to this wonderful support group, you will > find > a wealth of information on dos and don'ts with > medications and some related symptoms that we can > identify with from time to time. Not all LBD LO's > follow the same pattern of symptoms and there > doesn't > seem to be a set pattern to follow of stages. This > disease is known as the " Beast " here, because it > is > very frustrating for all involved. It is a rollar > coaster of emotions for the caregiver and of > peeks, > valleys and plateus for the LO. My husband was > diagnosed with Parkinsons (which is really a > parkinsonism, not the true Parkinsons) in 1992 and > in > October of 2003, he was diagnosed with LBD. The > hallucinations and dementia started showing up > around > 2000. In my opinion he is at the beginning of the > end > stages. He is incontinent, can bearly walk and is > in a > wheelchair most of the time.He is more confused > these > days than lucid, although he surprises me at times > and > can be as clear as a bell in his thoughts. He has > a > hard time forming his words and is hard to > understand > from time to time. He misnames objects and at > times > forgets who I am. There are two of me many times. > One > is good and the other is bad. He talks to me in > the > third person telling me about me using my name. I > am > also Jan, so already we have some things in > common. > You will find over time things that you will need > to > do; like make sure you have a Durable Power of > Attorney, you will start to run into things that > can > not be handled without a Durable POA, such as > money > issues, health issues to name a few. It will help > you > immensley if you have a caregiver or family > support to > give you a break once in awhile if you are the > primary > caregiver or you will start to breakdown. It's > very > important to keep your health and sanity and to > take > some time for yourself. As things come up that you > are > having to deal with, there is usually someone on > this > site that will have advice or a link to your needs > or > who is struggling with the same issues and can > give > you some information on how to get through it. > Take Care Jan and keep in touch.......Jan Colello > > > > --- jan arendt wrote: > > > Thank you for accepting me into this group. My > > husband has been diagnosed with LBD with > > Parkinsonism. Any suggestions, help or > " whatfors " > > will be appreciated. Jan > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2004 Report Share Posted September 29, 2004 Jan observed: .. . . he pushes the walker way out in front of him. ********************* My mom does that too - not intentionally really but she walks about two steps before she stops but while her feet stop, she is still pushing the walker!! I constantly have to tell her to walk up a little bit so she is closer to the walker. There are evenings when we are pretty nearly crawling along to the dining room in her building when I think it would just be simpler and easier to use her transport chair. However, I want her to keep walking for as long as she can - even if it might drive me nuts!!! carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 In a message dated 9/29/2004 10:35:10 PM Central Daylight Time, cbhillman@... writes: Jan observed: .. . . he pushes the walker way out in front of him. ********************* carol adds My mom does that too - not intentionally really but she walks about two steps before she stops but while her feet stop, she is still pushing the walker!! I constantly have to tell her to walk up a little bit so she is closer to the walker. dad does that too, and his worst habit is when he gets up off the bed he has walker three feet in front of him and tries to pull up to it, and then it gets away from him and we hear a loud thud, and he is down on floor, i just cant seem to make him understnad to keep it close to him, i guess it is a one of those beast things, huh? sharon m a smile a day keeps the meanies away!!! laughter is a breath of fresh air! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 At 01:37 AM 10/1/2004, you wrote: >I imagine that people with any dementia must have difficulty processing >information. Believe me, I can empathize with the above. I keep telling my >mom that she has to stand right in front of the walker but then a minute >later it has gotten away from her and I tell her all over again and then a >minute later. . . I'm beginning to think that the most persistent problem with LBD is the loss of motor skills. My mother, who as I indicated is doing much better in general, still has some very serious issues with being able to follow basic directions like " Now walk backwards " or " Move one step to the right. " When she was very confused due either to the disease or the meds, I expected this, but her current lucidity has managed to fool me into thinking that she's going to comprehend more instructions for movement. OTOTH, she showed a lively interest in politics at supper tonight, and it's been a very long time since that's been true. Perhaps I shouldn't do the mouth thing with this particular gift horse. d. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Sharon observed: i just cant seem to make him understnad to keep it close to him. . . *********************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Sharon observed: i just cant eem to make him understnad to keep it close to him. . . ******************** I imagine that people with any dementia must have difficulty processing information. Believe me, I can empathize with the above. I keep telling my mom that she has to stand right in front of the walker but then a minute later it has gotten away from her and I tell her all over again and then a minute later. . . Sorry for the prior missent post. This has been a bad week and the condo closing led me to believe that I am living proof that there is a 's Law! carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 hi jan a, i was reading yours and jan c letters, my dad is on exelon he will be increased on the next appt to the max 6mg 2 times a day, i have noticed a slowing of his decliniung, and the doctor wants to add namenda also. dad takes zoloft 50mg for stress and a bp med, and 325 mg aspirin every day. dads walking is declining the fastest, i am afraid to say it wont be long until he is in a wheelchair, he came home form hosp with a walker in may. dad has little depth perception and frequently falls due to his feet not keeping up with his arms pushing the walker. he has had several bad falls but fortunately no broken bones, yet, dad still has healthy appetite, we keep a goodie box of crackers cookies and snacks at the foot of his bed, and he always has a glass of water too. i am lucky my hubby is a wonderful help as i am disabled and have a difficult time lifting and pulling, so donnie does most of that, including giving daddy a shower. good luck and let me/us know if we can help, by the way we are having a caregivers meeting this weekend oct 9in atlanta, we are trying to get as many people as we can to go, let me know if you need hotel info hugs, sharon m a smile a day keeps the meanies away!!! laughter is a breath of fresh air! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Hi Janet C., You answered some concerns I had regarding day care for my husband. I am thinking if he does get going to a day care program it will be hard to get him on the bus--I have trouble getting him in our van! I know I must get some in home and at least try to have him go to the Day Care for stimulation. He sits and sleeps all day, aside from a walk around the block that I try to do with him every day. He will need the walker soon I am afraid--he is less steady almost daily. Have you had your hubby on exelon? I read that it was helpful with several of the folks in the LBD group. I am planning on asking the psychiatrist about using it. The " help me's " ,especially at night, are very upsetting. (Gets me crabby) He doesn't know what " help " is needed usually, just " help " . Must be really awful for him--I need more patience, that's a given. I can't keep lifting and pulling him however. He is a big person, not fat, but 6 " 4 " (was) and around 200lbs. (I'm not that heavy---yet--or that tall) I am trying to get him off some of his meds--the Dr did not call back. I called for an appt, and got a nurse calling to as what the problem was. She said she would call back after talking to the Dr, that was a few days ago. My main thing these days is " I just don't know " . He is on nameda, aricept, seroquel,(bedtime) ,stalevo , and sinemet--too many drugs I think. He also gets stool softener, Vit E., regular Vitamin and Vitamin B(multi with 400mgs of folic acid). Wjill close for now. Janet A vers Sent: Wednesday, September 29, 2004 1:05 PM Subject: Re: Hi Jan A. Hello again Jan, Our husbands do have some similar things going on. I have Jim use a walker at least once a day, so he doesn't atrophy, but he really can't walk without assistance. His feet stick to the floor and his legs shake and he pushes the walker way out in front of him. If I ask him to focus and take big steps he can do it, but on his own he walks on his toes with little steps and loses his balance. He pushes the walker into walls and furniture to stop it, so he can catch up to it. I hold the walker now and assist him, so the walker doesn't get away from him. We also live in California, in the San Francisco Bay Area. We are in Lafayette in the East Bay. I have Jim in a Day Program, which has physical therapy and occupational therapy and a lot of other stimulation. He only goes twice a week, Monday and Friday, because he does not have the stamina to make it through an entire week. He falls asleep after lunch at his program and misses the last half usually.They have a wonderful menu there that they serve, but Jim is a picky eater, so I have to pack his lunch for him every time he goes, except for one or two times within the month that he might like what they are serving. He goes from 10-3. He resists going a lot and mostly doesn't make it to his program. He calls it the " gym. " It becomes a power struggle to get him there and many times in his confussion he gets aggressive about it and it's not worth the fight to get him there. He has made it two weeks in a row straight if he goes this Friday. It will be a record! I have found that if I let him wake up on his own time, which is around 9AM and don't rush him to get ready, he is usually ok with it. We are about 15 min late in getting there, but it is better than not being there I think and it is ok with the staff that he is a little late. There is a bus that would pick him up at the house, but he won't get on it, so I drive him each time. All he does is sleep and watch TV at home and usually falls asleep in front of the TV too. He seems to think when I rush him that I am up to something; like going to have an affair. He is very delusional. Who has the time or energy for such a thing??!! Not that I'd even want to do such a thing. I also have a caregiver that comes on Tuesday and Thursday 10-2, so I do get some time on those days even if Jim doesn't go to his Day Program. But these days to myself are not always for rest I have to get outside routines done too; like grocery shopping, banking, car repairs or whatever. I have no family support. Jim's buddies all stopped showing up about a year ago, his last buddy to come visit even stopped coming. I have a male caregiver, so Jim gets some male company. I think he needs that. They like to watch the same movies on TV. War movies and Cowboys.... Wayne especially. I leave Jim at an Assisted Living Facility that has a dementia unit for a week each year and I take respite and go away. I have to leave plenty of snacks in his room, because he won't eat the food served most of the time at the facility. I usually go to Manzanillo, Mexico to visit a friend and her husband that retired and moved to LaPunta, a beautiful community there. I really was feeling " Cabin Fever " this summer, because I hadn't been away since last November and can't get away for even a weekend and since Jim does not travel well on distance anymore, I made reservations for a weekend, Fri- Sun. at a Hilton Hotel in our area, 7 mins. away from home, for Jim and me. It was the best thing I have thought of in a long time. I got the rest I needed. Jim had a TV and I was never out of his sight for him to keep yelling for me, since it is just a large bedroom we were in. I requested a Handicap Bathroom, so it was equipped for his needs. I got to swim and exercise and I ordered room service every morning. I didn't even have to make the bed. I was so rested after that weekend, I was ready to take anything on. I am going to make it a biannual thing to do now for my own sanity. I will take this trip to the Hilton every 6 months. Jim is on Sinemet and Seroquel only. I am trying to keep the medications at minimum, because of his high sensitivity to the medications and the struggles of adding new ones. He has been on Vicodin for restless legs, it deadens the feeling of the movements in his legs without making him grogy. It seems to work the best for him. We tried all kinds of things and most were a disaster. Even though Vicodin is addictive, it is the best of the two evils, the other evil being sleep deprived for Jim. And me, for having to be up with him all night. I hope you can find a way to get respite, because you need to do that for yourself. Take care................Jan C. --- jan arendt wrote: > Hi to you also, Jan! > I truly appreciate your taking time to write about > your hubby and challenges of LBD. It sounds so > similar to our situation, aside from the wheelchair. > is still walking, but very unsteady. He is > frequently unable to organize his words and " spit " > them out correctly. Fortuneately we do have a good > POA for health and finances and I am double checking > this on Fri. with the person (or firm) that > initially did our trust. We live in San Diego-have > you tried any day care facilities? I have gone to 4 > different ones that offer physical and occupational > therapy and 2 meals per day-activities;they are for > Medi-cal or $75/day private pay.. One seemed OK, > but hard to see in the group. has no > hobbies and sits on the couch most of the day. With > help will get in bed at night, but calls out > frequently and goes downstairs and sits on the > couch. " Help me " and " I can't " are frequent phrases. > He sleeps most of the time, I will need to get some > respite, don't want to be a grouchy old resentful > crab. I don't even like me when I get that way! I > am very fortunate to have friends who come by, call, > and that is helpful. is not a " people person " > when well, and now is more " private " , unfriendly > acting. He is depressed, but welbutrin, and other > antidepressants tried, seemed to add to his > confusion rather than help the situation. I > apologize for rambling--thank you for the welcome > and earlier advice. Jan A > Re: Hi Jan A. > > > Hi Jan, > Welcome to this wonderful support group, you will > find > a wealth of information on dos and don'ts with > medications and some related symptoms that we can > identify with from time to time. Not all LBD LO's > follow the same pattern of symptoms and there > doesn't > seem to be a set pattern to follow of stages. This > disease is known as the " Beast " here, because it > is > very frustrating for all involved. It is a rollar > coaster of emotions for the caregiver and of > peeks, > valleys and plateus for the LO. My husband was > diagnosed with Parkinsons (which is really a > parkinsonism, not the true Parkinsons) in 1992 and > in > October of 2003, he was diagnosed with LBD. The > hallucinations and dementia started showing up > around > 2000. In my opinion he is at the beginning of the > end > stages. He is incontinent, can bearly walk and is > in a > wheelchair most of the time.He is more confused > these > days than lucid, although he surprises me at times > and > can be as clear as a bell in his thoughts. He has > a > hard time forming his words and is hard to > understand > from time to time. He misnames objects and at > times > forgets who I am. There are two of me many times. > One > is good and the other is bad. He talks to me in > the > third person telling me about me using my name. I > am > also Jan, so already we have some things in > common. > You will find over time things that you will need > to > do; like make sure you have a Durable Power of > Attorney, you will start to run into things that > can > not be handled without a Durable POA, such as > money > issues, health issues to name a few. It will help > you > immensley if you have a caregiver or family > support to > give you a break once in awhile if you are the > primary > caregiver or you will start to breakdown. It's > very > important to keep your health and sanity and to > take > some time for yourself. As things come up that you > are > having to deal with, there is usually someone on > this > site that will have advice or a link to your needs > or > who is struggling with the same issues and can > give > you some information on how to get through it. > Take Care Jan and keep in touch.......Jan Colello > > > > --- jan arendt wrote: > > > Thank you for accepting me into this group. My > > husband has been diagnosed with LBD with > > Parkinsonism. Any suggestions, help or > " whatfors " > > will be appreciated. Jan > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 >Did the Dr. give any reason for stopping it? All the doctor said, apparently, was that " they " didn't like it. Not exactly a medical reason... I think both excelon and aricept serve the same or similar purposes. It's just that once a patient starts, they shouldn't ever stop taking it until the disease has progressed to the point that it's no longer useful at all. JP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Hi Sharon! Thanks for the exelon info.. It sounds like it may be worth trying! My hubby seems to be declining daily--he does very little to help himself--he needs lots of encouragement, firmness, and " you need to try " before anything in done now. That includes shower, dressing, " potty " both on and off.,sitting down on chair at table and couch, etc...He sleeps most of the day in front of the TV. Confusion stresses him out--he does not like me talking to friends on the phone or inside the house over coffee for very long periods of time. He wants to go home-now, " help me " , we are home usually when he says that. The caregivers meeting sounds great, but afraid San Diego is a bit far to come from to attend. Hope you get a good attendance. All for now--hugs back--Jan A. Re: Hi Jan A. hi jan a, i was reading yours and jan c letters, my dad is on exelon he will be increased on the next appt to the max 6mg 2 times a day, i have noticed a slowing of his decliniung, and the doctor wants to add namenda also. dad takes zoloft 50mg for stress and a bp med, and 325 mg aspirin every day. dads walking is declining the fastest, i am afraid to say it wont be long until he is in a wheelchair, he came home form hosp with a walker in may. dad has little depth perception and frequently falls due to his feet not keeping up with his arms pushing the walker. he has had several bad falls but fortunately no broken bones, yet, dad still has healthy appetite, we keep a goodie box of crackers cookies and snacks at the foot of his bed, and he always has a glass of water too. i am lucky my hubby is a wonderful help as i am disabled and have a difficult time lifting and pulling, so donnie does most of that, including giving daddy a shower. good luck and let me/us know if we can help, by the way we are having a caregivers meeting this weekend oct 9in atlanta, we are trying to get as many people as we can to go, let me know if you need hotel info hugs, sharon m a smile a day keeps the meanies away!!! laughter is a breath of fresh air! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 <<He wants to go home-now, " help me " , we are home usually when he says that.>> My father is convinced that he and my mother have moved recently even though they've been living in the same house for sixteen years. He talks about how difficult the move was and how he's worried that his friends won't know where he is living now. No amount of explanation clears the confusion for very long. He is scheduled to begin excelon in a few weeks. I'm hoping it will help, at least for a little while. He was on aricept but the last neurologist took him off it after his first visit there. I read today in a medical journal on line that once these meds. are begun, they should never be stopped because evidence of rapid cognative decline has been shown to occur once the meds. are stopped with little gain should the patient start taking the meds. again. I hope it doesn't prove true for him. I don't understand why a doctor would take him off a medication shown to cause serious damage in some cases if it is stopped. I'm learning that sometimes families have to do their own research in order to protect patients from the well-meaning suggestions of their doctors! JP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 I had read that about aricept also. Did the Dr. give any reason for stopping it? We have lived in our home for 36yrs. He just seems to be declining too fast! Take care. Jan A Re: Hi Jan A. <<He wants to go home-now, " help me " , we are home usually when he says that.>> My father is convinced that he and my mother have moved recently even though they've been living in the same house for sixteen years. He talks about how difficult the move was and how he's worried that his friends won't know where he is living now. No amount of explanation clears the confusion for very long. He is scheduled to begin excelon in a few weeks. I'm hoping it will help, at least for a little while. He was on aricept but the last neurologist took him off it after his first visit there. I read today in a medical journal on line that once these meds. are begun, they should never be stopped because evidence of rapid cognative decline has been shown to occur once the meds. are stopped with little gain should the patient start taking the meds. again. I hope it doesn't prove true for him. I don't understand why a doctor would take him off a medication shown to cause serious damage in some cases if it is stopped. I'm learning that sometimes families have to do their own research in order to protect patients from the well-meaning suggestions of their doctors! JP Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Jan wrote: He wants to go home-now, " help me " , we are home usually when he says that. ************************ I think I wrote about this once before, but someone I know came up with an ingenious solution to this problem. Her MIL would constantly complain about wanting to go " home " so this woman would put her MIL in the car, drive around a few blocks and come back and - voila - HOME!!! It worked every time!! carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 JanC. Don't wait to a doctor's office to call you back more than a day. The squeaky wheel gets the grease. I'm not sugggesting you make a pest of yourself, but call daily and ask when you can expect a call back. I used to work in a doctor's office and unwittingly, messages do go astray at times. Sorry you're having such a hard time. Gitch Quote Link to comment Share on other sites More sharing options...
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