hi , after amonth of attempting to reg ,ithink i have managed it, well ,that is with the help of my young neice ,and Nada,iwould like to say ,whilst i have been struggling,(i am very very new at this )ihave been kept going ,reading all your posting,s they made me feel not quiteso alone ,i have good family and friends;but no one can understand like those who are going through it .iam caring for my husband Jim who has had ADfor 7/8 years he is now still only63 .iwas wanting to hear from anyone whowas caring for someone who was using EBIXAand what is your opinion of it,in the meantime i have managed to obtain it myself ,it is very early days yet,he has just gone on to the full dose after 4 weeks ,but there is ,sadly no good signs yet Iwill keep you posted
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- Thread starter angela.robinson
- Start date
Dear Angela
A very warm welcome to TP.
I have no experience of Ebixa as Margaret has been on Aricept for the last five years.
But I think you may find the patterns are similar, although there was never any discernable improvement in Margaret, neither was there any rapid deterioration either. I am firmly of the opinion that the disease was held at bay for a few years by the use of the drug. So hopefully you may get the same effect with Ebixa.
As you probably know there is at present no cure for AD, so we have to make the best of what is available, and live in hopes for the best and prepare for the worst.
This site is a wonderful place, full of wonderful people who have all suffered as carers and are prepared to give help and encouragement to all who need it. And believe me we all need it at times. So don't hesitate to post any questions or fears you may have, and be asssured of a helpful response.
Cheers Barraf
A very warm welcome to TP.
I have no experience of Ebixa as Margaret has been on Aricept for the last five years.
But I think you may find the patterns are similar, although there was never any discernable improvement in Margaret, neither was there any rapid deterioration either. I am firmly of the opinion that the disease was held at bay for a few years by the use of the drug. So hopefully you may get the same effect with Ebixa.
As you probably know there is at present no cure for AD, so we have to make the best of what is available, and live in hopes for the best and prepare for the worst.
This site is a wonderful place, full of wonderful people who have all suffered as carers and are prepared to give help and encouragement to all who need it. And believe me we all need it at times. So don't hesitate to post any questions or fears you may have, and be asssured of a helpful response.
Cheers Barraf
C
Chesca
Guest
Dear Barraf
'Live in hopes and prepare for the worst'. I rather like that. Am still learning after all this time. You're a lovely wonder!
Chesca
xxx
'Live in hopes and prepare for the worst'. I rather like that. Am still learning after all this time. You're a lovely wonder!
Chesca
xxx
Dear Chesca
Kind of you to say it but I am neither lovely nor wonderful, just a poor stuggler doing the best I can.
With what seems at times to be totally inadequate resources, I mean in myself not outside help.
That is why I am so thankful to have found this site, it helps to keep me sane. I think?
Cheers Barraf
Kind of you to say it but I am neither lovely nor wonderful, just a poor stuggler doing the best I can.
With what seems at times to be totally inadequate resources, I mean in myself not outside help.
That is why I am so thankful to have found this site, it helps to keep me sane. I think?
Cheers Barraf
C
Chesca
Guest
Hello Angela, glad you found us and hope that you find many friends and much useful support here. It's amazing isn't it that the technology presented to us as torture, the younger just step in as though it's second nature? So thanks to your clever niece. She just has one more job to do. At the header of TP there is a facility to Search. Once clicked you can type in the word Ebixa and you will be shown a list of posts about the drug. Click on any one of those and you will be led down a road of many others' experiences. However, that's the practical!
More importantly is how are you coping? It must be tough for you all - your husband is young and you will find many people in your situation on here. It will be very difficult and sometimes lonely for you. So use this site, it does help.
My Mum is now in her eighties and struggled valiantly with AD for 20 years, as we did as a family to come to terms with it. We never have got it right, despite our best efforts. But we tootle along. In her late seventies she was prescribed Aricept, which I understand has a cummulative effect, that is, as I understand it, you have to wait a while to assess any benefit from the drug. It worked as a delaying tactic; none of these drugs serve to cure, sadly.
You will receive much kindness and support here and no doubt somebody with experience of Ebixa will let you have benefit of their experience. In short, where Ebixa is concerned I'm not a lot of use, sorry about that. Just glad to meet you.
Kindest of wishes to you.....and give your niece a hug from me
Chesca
More importantly is how are you coping? It must be tough for you all - your husband is young and you will find many people in your situation on here. It will be very difficult and sometimes lonely for you. So use this site, it does help.
My Mum is now in her eighties and struggled valiantly with AD for 20 years, as we did as a family to come to terms with it. We never have got it right, despite our best efforts. But we tootle along. In her late seventies she was prescribed Aricept, which I understand has a cummulative effect, that is, as I understand it, you have to wait a while to assess any benefit from the drug. It worked as a delaying tactic; none of these drugs serve to cure, sadly.
You will receive much kindness and support here and no doubt somebody with experience of Ebixa will let you have benefit of their experience. In short, where Ebixa is concerned I'm not a lot of use, sorry about that. Just glad to meet you.
Kindest of wishes to you.....and give your niece a hug from me
Chesca
ebixa
thanks BARRIFF
for my first contact,Jim was also on aricept about 4 years i firmly beleive that it had slowed the illness down ,there was an initial improvement then a slow decline,several times the consultant suggested he come off them ,wich i resisted however when i agreed to take him of it for a trial period i found he started to go down fast ,but early last year he started with dillusions and all sortsof things ,so once again iwas told it could be side effects of aricept but i think this was a big mistake,since coming of the drug he has gone down rapidly and still has the dellusions 7months on now since reading all the postings i know it is just the progression of AD,if there is no joy with the ebixa, i may try to get him back on aricept but i fear it is all to late
thanks BARRIFF
for my first contact,Jim was also on aricept about 4 years i firmly beleive that it had slowed the illness down ,there was an initial improvement then a slow decline,several times the consultant suggested he come off them ,wich i resisted however when i agreed to take him of it for a trial period i found he started to go down fast ,but early last year he started with dillusions and all sortsof things ,so once again iwas told it could be side effects of aricept but i think this was a big mistake,since coming of the drug he has gone down rapidly and still has the dellusions 7months on now since reading all the postings i know it is just the progression of AD,if there is no joy with the ebixa, i may try to get him back on aricept but i fear it is all to late
Hi Angela, just wanted to say welcome, don't have any experience with Ebixa, but as you can see plenty here do. Please post when ever you can, I am pretty hopeless on a PC too so never worry about it. Several of our members are brilliant though and will be happy to advise you if you need any help. Love She. XX
C
Chesca
Guest
Dear Struggio
I beg to differ, and begging is really not much my thing. If I want to think you are wonderful I will do as I please. How many times have you held my head above the water? Well, you have. So, OK then, from time to time you have lovely thoughts. Allowed? to say any less would be to demean all of us as carers and I don't care what anybody says, including you Struggio, the lovely wonder is the spirit of people on TP which is what you were talking about in the first place! You want to take that away from me? Want me to throw my rattle out of the pram, again?
Love from a fellow Struggler
Chesca
I beg to differ, and begging is really not much my thing. If I want to think you are wonderful I will do as I please. How many times have you held my head above the water? Well, you have. So, OK then, from time to time you have lovely thoughts. Allowed? to say any less would be to demean all of us as carers and I don't care what anybody says, including you Struggio, the lovely wonder is the spirit of people on TP which is what you were talking about in the first place! You want to take that away from me? Want me to throw my rattle out of the pram, again?
Love from a fellow Struggler
Chesca
Hi Ches, oh no please don't, throw your rattle I mean, or you might hit poor JJ, then you'll never find out where he hides his Thorntons! How is Mrs Pumblechook, you havn't mentioned her for a day or so? Lotsaluv, She. XX
C
Chesca
Guest
Dearest She, I know alright where JJ hides the Thorntons. In his gob is where (sound familiar?) via the tool box taken down to the VAN of which you may read soon in the Tea Room. That's another story.
Mrs Pumblechook? Can't talk too much about that at the moment, it's just a bit too too...............can't! Too sad. Too emotional.
Lots of love
Chesca xxx
Mrs Pumblechook? Can't talk too much about that at the moment, it's just a bit too too...............can't! Too sad. Too emotional.
Lots of love
Chesca xxx
thanks chesca
yes i am finding it very tough especialyhas jim will not tolerate anyone else looking after him ,so at the moment there is no help i can take advantage of ,as you can see i have to be a late night user after he is fast off luckily he does sleep well at night ,but will not go to bed without me and he is ready by8 oclock so i retire after the soaps armed with mountain of books ,then creep out when he is snoring ,we sleep down stairs the computer is at the side of the bed ,my bottle of wine is at the side of the computer,my dictionary is at the side of the wine ,after a few glasses i forget about the dictionary ,why is there not a spell checker ?or is there.
yes i am finding it very tough especialyhas jim will not tolerate anyone else looking after him ,so at the moment there is no help i can take advantage of ,as you can see i have to be a late night user after he is fast off luckily he does sleep well at night ,but will not go to bed without me and he is ready by8 oclock so i retire after the soaps armed with mountain of books ,then creep out when he is snoring ,we sleep down stairs the computer is at the side of the bed ,my bottle of wine is at the side of the computer,my dictionary is at the side of the wine ,after a few glasses i forget about the dictionary ,why is there not a spell checker ?or is there.
EARLY MORNING CHUCKLE
Well - I think we have enough evidence on TP to take to Statutory services and say - we need carer support services at 12.00 midnight till 3.00 am !!!!!!!
On second thoughts - No ! we council tax payers couldnt afford the overtime rates!
Sleep tight everyone.
Well - I think we have enough evidence on TP to take to Statutory services and say - we need carer support services at 12.00 midnight till 3.00 am !!!!!!!
On second thoughts - No ! we council tax payers couldnt afford the overtime rates!
Sleep tight everyone.
Angela, if there is, I for one haven't a clue where! Don't worry about the spelling or anything else on here, just keep posting and chat away. Do you have a Crossroads or Age Concern near you, (you can find out about them in our fact sheets, go to the top of the page and click the information button in the left hand top corner,) that is right isn't it guys?? Told you I was dodgy on this Angela! they may be able to help. The first time we had Crossroads, I introduced the girl as my friend, (she is now anyway!) I stayed with Mum too, but went off a few times to "do" things. The next time, she greated the girl without any problems. I said I had to pop to the shops, would she mind looking after Jan for me? Mum said no, of course not and off I went for a litle break! It may work for you too. Love She. XX
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C
Chesca
Guest
Hi Angela
When you first log on to the Talking Point there is a list of subjects and one titled Computer Tips and How to use This place or some such which. I mention this because Chris started a thread about just such a subject as spelling. If you get the chance, read it. Bottom line is, who cares about your spelling or whatever it is. What you have to say is important. There are no gold stars here for grammar, just your company and a shared problem will do. So put down the dictionary, type your type and we'll raise a glass together, tonight mine is a particularly nice red in celebration of life, so cheers!
You know your sleepy time trick with the books? I have to do that with my partner, who doesn't have AD but has helped look after Mum. Because he works so hard he collapses into bed some nights and we watch a film together, or should that be a tenth of a film. He falls asleep, cosy and comfortable and I get out of bed, finish watching the film in our living room or log on to TP which is by far the better choice - he doesn't half choose some junk to watch!
Chris, I've been doing the night shift on here since I joined. Who do you think is the original Midnight Minnie? 12 til 3? I've done 24 hours around the clock, there are times it kept me sane just having the choice. Not complaining, just I want a shift allowance - even if it is only a sachet of coffee.
Love to all
Chesca
When you first log on to the Talking Point there is a list of subjects and one titled Computer Tips and How to use This place or some such which. I mention this because Chris started a thread about just such a subject as spelling. If you get the chance, read it. Bottom line is, who cares about your spelling or whatever it is. What you have to say is important. There are no gold stars here for grammar, just your company and a shared problem will do. So put down the dictionary, type your type and we'll raise a glass together, tonight mine is a particularly nice red in celebration of life, so cheers!
You know your sleepy time trick with the books? I have to do that with my partner, who doesn't have AD but has helped look after Mum. Because he works so hard he collapses into bed some nights and we watch a film together, or should that be a tenth of a film. He falls asleep, cosy and comfortable and I get out of bed, finish watching the film in our living room or log on to TP which is by far the better choice - he doesn't half choose some junk to watch!
Chris, I've been doing the night shift on here since I joined. Who do you think is the original Midnight Minnie? 12 til 3? I've done 24 hours around the clock, there are times it kept me sane just having the choice. Not complaining, just I want a shift allowance - even if it is only a sachet of coffee.
Love to all
Chesca
hi sheila
yes we have had crossroads for2years now it was fine up to last may when he started to be madly jelous of every male that came to the house he thinks i am going to run of with them so if i left him with female helpers he still thinks i have been of out with some man or another this has got so bad that he has seen of his support worker from the buddys who was a great help to us ,and worst still he is now taking the same attitude with one of my 2 sons who bends over backwards to help us ,this is heartbreaking for all of us
yes we have had crossroads for2years now it was fine up to last may when he started to be madly jelous of every male that came to the house he thinks i am going to run of with them so if i left him with female helpers he still thinks i have been of out with some man or another this has got so bad that he has seen of his support worker from the buddys who was a great help to us ,and worst still he is now taking the same attitude with one of my 2 sons who bends over backwards to help us ,this is heartbreaking for all of us
C
Chesca
Guest
Hello again, Angela
One of the mantras on here is always to remember that it is not your loved one who is being unreasonable, it's very much the illness speaking. It's a mental illness, however unpleasant that sounds in the world of unacceptance. No point in trying to reason with the unreasonable.
I found the best ploy was to placate, for example if a support worker came to the house threatening her 'territory' I told Mum she was my 'friend' or the person paid to help as a result of a fund she had paid into. There are no defined solutions because you know your husband best. But I think I can say that he won't remember his hurtful comments minutes after and neither should you. Take the flack, treat it in your head for the nonsense it really is and it'll soon pass and be forgotten, certainly by your husband. The worst aspect is the repitition.
Don't forget to mention these experiences when you next see the consultant. And if things are getting out of hand sooner he needs to know.
In the meantime, you look after you and hope to speak to you soon.
Goodnight and cheers
Chesca
One of the mantras on here is always to remember that it is not your loved one who is being unreasonable, it's very much the illness speaking. It's a mental illness, however unpleasant that sounds in the world of unacceptance. No point in trying to reason with the unreasonable.
I found the best ploy was to placate, for example if a support worker came to the house threatening her 'territory' I told Mum she was my 'friend' or the person paid to help as a result of a fund she had paid into. There are no defined solutions because you know your husband best. But I think I can say that he won't remember his hurtful comments minutes after and neither should you. Take the flack, treat it in your head for the nonsense it really is and it'll soon pass and be forgotten, certainly by your husband. The worst aspect is the repitition.
Don't forget to mention these experiences when you next see the consultant. And if things are getting out of hand sooner he needs to know.
In the meantime, you look after you and hope to speak to you soon.
Goodnight and cheers
Chesca
Dear Angela, Chesca is right, it's the illness not your husband. He will forget in a few minutes, trouble is, when you love them, even knowing it's the illness, these things still hit a nerve sometimes and really hurt don't they. It sounds as if things are really quite difficult for you at present. Do you get any respite at all? I mean either day care or the occasional week when your hubby goes to a care unit. If you don't , it might be well worth enquiring about the availability in your area to the specialist. You sound like you need a break, wish I could come over and give you some help, can't do that so sending you a big hug from Sussex. Love She. XX
Hi Angela,
I would just like to say that i look after my husband also called Jim, he was diagnosed 4 years ago when he was 61, he was given Aricept and I can honestly say that up till about 3 month ago it was holding as well as we could wish the AD in check, unfortunately he is now going downhill and the hospital are asking me to make a decision to take him off Aricept as they dont think he is benifiting from the drug, I just can't do that so at the moment we are waiting for his next consultation at the hospital in a couple of months. About Ebixa I know nothing apart from it isnt yet prescribed by our health authority.
I have recently started wih crossroads, and Jim really doesn't like it, everytime I come back he gets upset but I am trying as hard as I can to ignore this and each week I toddle off not knowing what I coming back too, as this is my only respite as Jim will not consider anything else at the moment, I am determined to keep it going.
Best Wishes Doreen
I would just like to say that i look after my husband also called Jim, he was diagnosed 4 years ago when he was 61, he was given Aricept and I can honestly say that up till about 3 month ago it was holding as well as we could wish the AD in check, unfortunately he is now going downhill and the hospital are asking me to make a decision to take him off Aricept as they dont think he is benifiting from the drug, I just can't do that so at the moment we are waiting for his next consultation at the hospital in a couple of months. About Ebixa I know nothing apart from it isnt yet prescribed by our health authority.
I have recently started wih crossroads, and Jim really doesn't like it, everytime I come back he gets upset but I am trying as hard as I can to ignore this and each week I toddle off not knowing what I coming back too, as this is my only respite as Jim will not consider anything else at the moment, I am determined to keep it going.
Best Wishes Doreen
Hi Doreen, hang on in there! It is so important that you set up a pattern for respites etc. because if you don't, there will come a time when you will be struggling to cope. If you get it all in place, after a while your loved one will accept it. The thing to remember is that the illness is making them irrational so you really cannot afford to take these outbursts into account if you want to carry on caring for them at home. If you don't get help, sooner or later, it will get on top and then you will both suffer. Sorry to put it so bluntly, but so many times I have seen carers struggle to breaking point only to then be riddled with guilt when their loved one has to go into a home abruptly as they themselves are too exhausted to carry on or worse, in hospital. Best wishes, love She. XX
C
Chesca
Guest
Sheila, you are so right, of course. You practically echo my own situation and all of its traumas! Respite is a battle worth the fighting.
Chesca
xxx
Chesca
xxx