Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Hi Mariea. Wow, what a predicament. What amount of Aricept is she taking? Aricept is a slowing agent and supposedly promotes cognitively. It effects the levels of acetylcholine (a neurotransmitter) in the brain. My MIL takes 10mg's once a day and seems fine with it. I think Cheryl has had some bad experiences with Aricept with her husband if I am not mistaken. Perhaps you two could compare a bit? It is always scary reducing, eliminating, or adding a drug. There are side effects to all 3. I guess for the " slowing " factor, you could ask them to add Vitamin E (1000IU 2 times a day). My MIL's doctor feels Vitamin E paired with Aricept can slow the progression of healthy brain cells being attacked by the LBD cells. I guess if it were me, I would ask for exact details in what the doctor feels the end result would be off of the Aricept. Aricept isn't an extremely " powerful " drug in my opinion. I would say try it, and if after 3 weeks you don't have positive results, demand she be put back on immediately. Mariea, please don't take this the wrong way, but if in your heart you feel she really is nearing end stage, then what do you have to lose by giving it a try? You can always go back on the drug. I wish you the best in making this difficult decision. Take your time, think it over, and do what you feel is best. You know your Mom better then any doctor could ever know her. My prayers are with you. (unknown) Hi Group! When Mom was Dx with LBD it was at the hospital. When she was seen for the first time by the psychiatrist at the NH, he said he wasn't convinced that Mom has LBD. After I had gotten the Dx from the doctor at the hospital and looked up LBD the pieces fell in to place. This is causing me some fustration. The psych at the NH feels Mom has end stage Alz. He feels it's not LBD because she doesn't have enough Parkinson symptoms. They are still working on the agitation issue. I will not let them use the antipsychotics because of the devasting effects they have on Mom. I truely feel that she had the rapid decline because of the use of the antipsychotics when she was hospitalized back in April of this year. She came out worse then when she went in. Today the psych called. He was following up from seeing Mom last week and he had changed the doses of her Remeron and Trazodone. Today he said he wanted to stop the Aricept. He said he has seen this cause agitation. Mom has been taking Aricept for at least 3 years now. He is also upping the Neurontin. I'm a bit concerned about stopping the Aricept. He said if we didn't see any change after stopping the Aricept we could restart it. At this point I don't know if the Aricept is really helping any more, but even if it just the smallest help I hate the thought of what stopping it may do. Mom has been sleeping a lot. Her appitite hasn't been real good the past week. She is however drinking plenty of fluids. Yesterday she started speaking clearly again. However I think this is going to be about as good as it gets for her. Not to say that I won't stop praying that we have better days left. I hear how LOs have these terrible bouts with Lewy and then things seem to bounce back for a while. What does one due when there is a difference of opinion between you and the specialist? He respects my refusal to use the antipsychotics and understands my concerns about the effects they have on Mom. Does it really make any difference in the treatment at this point, whether it is LBD or Alz (as long as she doesn't get the antipsychotics)? It seems to me that which ever it is, Mom is close to the end stage. I don't think she is end stage quite yet. He feels she is end stage Alzheimer's. What I want is for Mom to have peace. The psych wants to keep her comfortable. Basically the same goal. All this seems to be wearing on me the last couple of days. Thanks for listening. Mariea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Mariea This all sounds so familiar. Sounds like you only want what is best for your mom...but not sure what " best " is at this point. You have your opinions and thoughts, and the doctor has his. I sure wish I had some quick advice. Is there some change your mom has recently went through to make the doctor want to stop the Aricept? Has she been more agitated lately? Agitation seems to be a major factor with my dad, especially if he isn't happy and has not been taking his meds. Please keep us posted as to what is decided. Also, I can't remember, do you hold Power of Attorney? Apparently, with the p.o.a. over my dad, I have more power than most p.o.a's because I have a letter from a neurologist stating that my dad is unable to make decisions for himself, therefore supporting the p.o.a. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Mariea This all sounds so familiar. Sounds like you only want what is best for your mom...but not sure what " best " is at this point. You have your opinions and thoughts, and the doctor has his. I sure wish I had some quick advice. Is there some change your mom has recently went through to make the doctor want to stop the Aricept? Has she been more agitated lately? Agitation seems to be a major factor with my dad, especially if he isn't happy and has not been taking his meds. Please keep us posted as to what is decided. Also, I can't remember, do you hold Power of Attorney? Apparently, with the p.o.a. over my dad, I have more power than most p.o.a's because I have a letter from a neurologist stating that my dad is unable to make decisions for himself, therefore supporting the p.o.a. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 In a message dated 2002-09-06 9:35:00 PM Eastern Daylight Time, LewyLady@... writes: > This said, I had a long and interesting conversation today with the research > > coord for the study in which my LO and I are participating. He told me > about > the differences in how research docs and practicing docs see things. They > are literally trained to approach a dx differently. Bottom line, I'll go > with > the research doc!! > Cheryl, Am most interested to learn more about the conversation, when you have the time, please. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 In a message dated 9/9/02 8:44:45 AM Central Daylight Time, cindy.vechinski@... writes: > I thought I had seen someone in here have adverse reactions to Aricept, but > maybe not. Yes, there are several here/were here who had very bad reactions to Aricept - I just don't remember who. For them Exelon often seemed to be the answer. My wanting to fight the latter is that the Aricept is working so well, and some transferred to Exelon haven't done well on it. So I want to milk the Aricept for all it's worth. :-) Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 In a message dated 9/9/02 8:44:45 AM Central Daylight Time, cindy.vechinski@... writes: > I thought I had seen someone in here have adverse reactions to Aricept, but > maybe not. Yes, there are several here/were here who had very bad reactions to Aricept - I just don't remember who. For them Exelon often seemed to be the answer. My wanting to fight the latter is that the Aricept is working so well, and some transferred to Exelon haven't done well on it. So I want to milk the Aricept for all it's worth. :-) Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 I am happy to hear about your husband beating those odds! That is a very good feeling indeed! I thought I had seen someone in here have adverse reactions to Aricept, but maybe not. My MIL's doctor said if we wanted she would let us try the Excelon, but we declined. The Seroquel and Risperidal are working great for now. Take care! Re: (unknown) In a message dated 9/6/02 6:57:06 PM Central Daylight Time, cindy.vechinski@... writes: > I think Cheryl has had some bad experiences with Aricept with her husband if > I am not mistaken. Au contraire, . You must be thinking of someone else, because we have had outstandingly excellent results with Aricept. There was a bad experience, but that was in the beginning when a " novice " neurologist upped the dosage at 2 months instead of allowing it the full 3 months to take effect. A blessing in diguise, actually, because the s Hopkins doc took my husband on as a regular patient, which the researchers rarely do, and found him to be his " poster boy for what can go right. " Aricpt 5mg worked very well for nearly 2.5 yrs, after which we bumped it up to 5mg 2x/d, about 1.5 yr ago. I remain confident that it is doing its thing. My apologies if I am repeating myself on this list, but a lengthy conversation with the researcher for the Predictor Studies today resulted in a confirmation that my husband is beating the odds with decline expectations. We are most fortunate, and I'd fight big time with anyone who wanted to try Exelon at this point! ;-) Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 I am happy to hear about your husband beating those odds! That is a very good feeling indeed! I thought I had seen someone in here have adverse reactions to Aricept, but maybe not. My MIL's doctor said if we wanted she would let us try the Excelon, but we declined. The Seroquel and Risperidal are working great for now. Take care! Re: (unknown) In a message dated 9/6/02 6:57:06 PM Central Daylight Time, cindy.vechinski@... writes: > I think Cheryl has had some bad experiences with Aricept with her husband if > I am not mistaken. Au contraire, . You must be thinking of someone else, because we have had outstandingly excellent results with Aricept. There was a bad experience, but that was in the beginning when a " novice " neurologist upped the dosage at 2 months instead of allowing it the full 3 months to take effect. A blessing in diguise, actually, because the s Hopkins doc took my husband on as a regular patient, which the researchers rarely do, and found him to be his " poster boy for what can go right. " Aricpt 5mg worked very well for nearly 2.5 yrs, after which we bumped it up to 5mg 2x/d, about 1.5 yr ago. I remain confident that it is doing its thing. My apologies if I am repeating myself on this list, but a lengthy conversation with the researcher for the Predictor Studies today resulted in a confirmation that my husband is beating the odds with decline expectations. We are most fortunate, and I'd fight big time with anyone who wanted to try Exelon at this point! ;-) Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Milk away! I don't blame you! Re: (unknown) In a message dated 9/9/02 8:44:45 AM Central Daylight Time, cindy.vechinski@... writes: > I thought I had seen someone in here have adverse reactions to Aricept, but > maybe not. Yes, there are several here/were here who had very bad reactions to Aricept - I just don't remember who. For them Exelon often seemed to be the answer. My wanting to fight the latter is that the Aricept is working so well, and some transferred to Exelon haven't done well on it. So I want to milk the Aricept for all it's worth. :-) Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 >The Seroquel and Risperidal are working great for now. I am getting on late tonight and probably several other people have already pointed out that what works for one person does not mean that it will work for someone else. My husbands bad reaction was to Risperidal...he ended up in the hospital. Right now he is on just Ativan, which for now is working somewhat but we are just starting our quest for a cocktail that is going to work for him. Hopefully we will have something working by Christmas as we will be traveling to spend Christmas with our kids and I reserved a vacation rental (house) on the ocean for 2 weeks after Christmas, I am so excited, this is for me! Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Most are aware that what works for one may not work for another. That logic applies to a lot of things in life. I don't need that pointed out to me as I am very aware of that. That is why I am always interested in hearing what does and doesn't work for everyone, it helps me understand what can and can't happen. Re: (unknown) >The Seroquel and Risperidal are working great for now. I am getting on late tonight and probably several other people have already pointed out that what works for one person does not mean that it will work for someone else. My husbands bad reaction was to Risperidal...he ended up in the hospital. Right now he is on just Ativan, which for now is working somewhat but we are just starting our quest for a cocktail that is going to work for him. Hopefully we will have something working by Christmas as we will be traveling to spend Christmas with our kids and I reserved a vacation rental (house) on the ocean for 2 weeks after Christmas, I am so excited, this is for me! Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Most are aware that what works for one may not work for another. That logic applies to a lot of things in life. I don't need that pointed out to me as I am very aware of that. That is why I am always interested in hearing what does and doesn't work for everyone, it helps me understand what can and can't happen. Re: (unknown) >The Seroquel and Risperidal are working great for now. I am getting on late tonight and probably several other people have already pointed out that what works for one person does not mean that it will work for someone else. My husbands bad reaction was to Risperidal...he ended up in the hospital. Right now he is on just Ativan, which for now is working somewhat but we are just starting our quest for a cocktail that is going to work for him. Hopefully we will have something working by Christmas as we will be traveling to spend Christmas with our kids and I reserved a vacation rental (house) on the ocean for 2 weeks after Christmas, I am so excited, this is for me! Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Mariea, this answers my earlier question. I am so sorry your mom is not doing well. In terms of her appetite, ask them if they can trial Megace. This is a medication that stimulates appetite. Hope this is helpful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Thanks for the info . Right now I want to see if in the next few days, after being on the antibiotics, if Mom's appetite picks up on it's own. The other thing, It is very hard to remove Mom's dentures. She doesn't give them up easily. I got them out of her mouth last week and they were caked with food. So I'm not sure if maybe things just weren't tasting right for her. Since then I have been able to get them out more often. Then I find out that there are findings that the elderly in NHs are getting bacterial pneumonia. It is believed it is from the bacteria on dirty dentures being aspirated!! Somehow we have to come with a way to get Mom to let her dentures be cleaned more regular. It's a deep seated issue for Mom about being seen without her teeth, even by me. Even though she is confused, deep down she is aware! Mariea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 In a message dated 9/11/02 5:52:26 PM Central Daylight Time, mls672@... writes: > So I'm not sure if maybe things just weren't tasting right for her. Since > then I have been able to get them out more often. Mariea, for what it's worth, the researcher told me that tastes change (my husband used to LIKE Ensure, doesn't anymore) and that we should expect them. This is not to discount the need for antibiotics and better oral hygiene. For me, poor oral hygiene would destroy everything I enjoy food-wise. (Well, would that give me an easy way to lose weight? ;-) ) I don't mean to make light, but we do need a chuckle now and then. And seriously, trouble removing dentures can create many problems - bacteria in the mouth, halitosis, indifference to good taste, and alienation to anyone who would come close. It is SO hard to encourage residents to part with their dentures or any other paraphanalia for hygiene reasons - they come to recognize them purely for cosmetic reasons. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 >The other thing, It is very hard to remove Mom's dentures. She >doesn't give them up easily. I got them out of her mouth last week >and they were caked with food. So I'm not sure if maybe things just >weren't tasting right for her. Since then I have been able to get >them out more often. Even though she is confused, deep down she is >aware! Mariea, my mother was the same way even to the point of insisting that if she was going in for an operation they had to take her teeth out after she went under and the first thing she would ask for when she came to was her teeth. When she was sick she would let me take them out and clean them but they had to go right back in her mouth, I couldn't soak them more then 5 min. while I did other cares. Mom had some dementia after an operation and she threw a blood clot, some things are just so deeply ingrained that even when nothing else is making sense they are aware of things like their teeth. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2002 Report Share Posted October 6, 2002 Shirley Best of luck with the appeal to Kaiser. Very well put!! Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2002 Report Share Posted October 7, 2002 Joanne, I agree with what you have said. Your husband is lucky to have you. I am glad you shared your story with us, don't remember if I ever read any of your post before. The information you wrote is certainly valuable,write as often as you like I will pray for you and yours...Shirley .. > >Sorry for rambling in three E-Mails. I usually just read the posts to >gain information. Aren't you happy I am not a frequent writer. Joanne _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 My dad is in a hospital bed provided by hospice, and they also provided an air mattress, specifically designed for medical use. It uses a small pump, similar to a fish tank filter pump, that keeps the air mattress under pressure continually. ED Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 Shirley You are right knowing you need to take it one day at a time. We could all get caught up in the " what if's " in life. Just know there are many people praying and for what seemed it wouldn't work out, already is. Take it one day, or even one moment at a time and with that life won't seem so over whelming. Hang in there, stay strong, and keep us all posted. Praying for your strength!! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Shirley, I am glad to read your post telling us you are looking for a NH for your Mom. I have been very concerned for you after your postings last week. Keep us all posted. Debbie C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Shirley Do you trust in a higher power? Do you whole heartedly trust in that higher power? Please take a deep breath and know you are not alone. In times of weakness we are made strong through the power of God. There are many people praying for you, and for your mom. May you be comforted in knowing that even though I don't tell you every moment of every day, you are in my prayers each and every moment. There is definately power in prayer...my dad's life was testimony of that. Wishing I could hug you in person! Saying multitudes of prayers and keeping you close in my heart... Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Shirley, Don't beat yourself up for your feelings. This is one of the most demanding jobs. I know the stress and strain you are under. I would always prayer to God to make things better. I now believe that he was telling me that it was time to place Mom in a NH. As devastating as it was to do, it had to be done. Not only for myself, but for my Mom. There isn't a day that doesn't go by that I don't wish I could still have my Mom here with me. I had those thoughts like you that some times it seemed like things weren't that bad. But the reality was that it was beyond me to care for Mom single handedly any longer. You can't function without proper sleep. The demands of caring for our LOs requires a well rested and nourished caregiver. Even though Mom is in a NH now, I am still her caregiver. I now have the help of the NH staff to make my part easier. Take care of yourself. Mariea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Shirley Loved the " prayer " you sent. Thank you for sharing it with us...it makes sense. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Shirley Loved the " prayer " you sent. Thank you for sharing it with us...it makes sense. Sandie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.