Mother diagnosed today

[Briony]

Hello all ..this is all very scary.... My mum was diagnosed 20th nov

Mum was diagnosed on the 20th of nov and so far little has happened ..I have received a copy of the referral to her doctor saying she will be offered a trial of donepezil and await an appointment for the memory clinic to start this drug ...
Although we new there was a really worry with mums memory having it it black and white is very scary as I'm her carer ..mum is 87 in a few days time and doesn't like taking medication at the best of time .Im now worried after reading a number of messages about problems with tummy ache and bowl movement that mum is going to refuse to take these pill as she has had problems with her bowl in the past ...
I just want to keep my mum for as long asks subtle before I loose her to this illness ... Just scared and feeling very isolated .
A very worried daughter x

Hi Candlelight 67, sorry to hear your news, I hope you don't mind me joining your thread, but my 79-year-old mother was diagnosed with Mild Alzheimers yesterday afternoon and also prescribed Donepezil, so it looks like we are both on the same journey, having started it at a similar point in time, and in the same county!

Bit scary, isn't it?

I would also say hi to those that have responded so far, and those that may offer further advice as the thread develops, and a big *hug* to everyone that is dealing with this.

I picked-up the Donepezil on the way home from the memory service and she took the first 5mg last night, so I am not sure if she will have problems with side-effects yet.

I do, however, have one question at this stage concerning Donepezil, one I am sure there's no definite answer to, as it must vary from one person to another.

But, I am puzzled by the fact that the doctor said it should halt the Alzheimers getting any worse for 5 years or more, and that he has some patients on it for 10 to 15 years with good results.

Yet, on the Alzheimers Society website (as a new member I can't post the link, but it's on the 'What is Alzheimer's disease?' page), it says "These drugs are not a cure, but they may stabilise some of the symptoms of Alzheimer's disease for a limited period, typically 6-12 months or longer."

Now, there's one hell of a different between 10 to 15 years, which was very reassuring, and 6-12 months, which scares the hell out of me.

Is there anyone here with experience of long-term use of Donepezil and how successful it is over a longer period of time?

EDIT:

I don't now how the hell I missed this:

..even on just skim reading the thread the first time, I guess my own head is a bit all over the place at the moment, this is certainly helpful to know, thanks jaymor.

 

[Concerned_Son]

Mum was diagnosed on the 20th of nov and so far little has happened ..I have received a copy of the referral to her doctor saying she will be offered a trial of donepezil and await an appointment for the memory clinic to start this drug ...
Although we new there was a really worry with mums memory having it it black and white is very scary as I'm her carer ..mum is 87 in a few days time and doesn't like taking medication at the best of time .Im now worried after reading a number of messages about problems with tummy ache and bowl movement that mum is going to refuse to take these pill as she has had problems with her bowl in the past ...
I just want to keep my mum for as long asks subtle before I loose her to this illness ... Just scared and feeling very isolated .
A very worried daughter x

Hi Briony, and sorry to hear your news.

Yes, it is a bit scary, but there does seem hope from what we've been told by the doctor at our local memory service yesterday, and from reading some of the posts on here.

I wouldn't worry too much at this point about the side effects from Donepezil, our doctor said these tend to only occur with a small minority of people. He also said side effects tend to occur from first taking it and often settle down after a week or so, the package leaflet also says the same.

Although I have very limited experience here, as my mother was only diagnosed yesterday & took her first tablet last night, I am very pleased to say that she has had absolutely no reaction to it whatsoever, which is a good start & something to be positive about. I guess those that have had problems with it are more likely to post about them, that's human nature.

I'll quote from the package leaflet, in the hope that reassures you a little, and anyone else that searches for 'Donepezil' on here in the future, which is how I first stumbled on this thread...

POSSIBLE SIDE EFFECTS:

Like all medicines, Donepezil hydrochloride can cause side effects, although not everyone gets them. In most cases, these disappear without having to stop treatment.

Very common: affects more than 1 user in 10
Common: affects 1 to 10 in users in 100
Uncommon: affects 1 to 10 in users in 1,000
Rare: affects 1 to 10 in users in 10,000
Very rare: affects 1 user in 1000

Very common: diarrhoea, nausea (feeling sick) and headaches.

/ END QUOTE.

The list for 'common' becomes a little longer, I can't type them all out as I only type with one finger, but we were advised that if any of these occurred to call the doctor straight away for advice. For these, do a google search, I would post a link, but as a new member here I can't until I reach 10 posts.

The main thing is, don't assume the worst at this point, keep positive.

I am more concerned that your mother was diagnosed on the 20th of Nov. and told she should be on Donepezil, yet you still haven't a prescription, whereas here in West Sussex both were done on the same day.

I would be inclined to get in contact with the GP and/or memory service, tell them you have been on here, tell them of how it works in West Sussex, kick-up merry hell, threaten to contact your local MP, local paper, local radio station, regional TV newsroom - this is all a big story nationally at the moment, the local media would pick-up on a story where you aren't being treated correctly, unlike in West Sussex.

It's not fair, it's not on - don't let them mess you about.

Good luck.