Medication.

[Kathleen]

My Mum was started on Galantamine 3 years ago and it almost immediately made her less muddled and gave her a good 6 months before we noticed a decline again,but very slow and gentle.

A year ago we had to admit her to residential care following the sudden death of our Dad, and she continued to be generally happy, physically fit and agile and apart from a few problems with her throat and swallowing which settled after a few weeks, she was doing ok.

Then 6 weeks ago the galantamine was stopped, the only reason being she had been on the same treatment for three years and it was "time for a change."

The last few weeks have been a rapid decline in her speech and understanding of language, she can no longer string more than 4 or 5 words together and they often make no sense.
She can no longer wash or dress herself, and is supervised in the toilet.
Her walking is slower, she has to be shown how to sit down and stand up, as she seems unable to understand the process.
Her meals are supervised or she forgets to eat and she seems "flat" in her moods, not showing any real emotions.
I am totally convinced this is a direct result of the withdrawal of the galantamine, as are the staff at the home, and none of us is too pleased, as Mums quality of life has been greatly reduced all for the sake of saving a few pounds a month on medication.
Doctors and drug companies are really good at telling you the possible side effects of taking medication, but nowhere can I find any information on the effect of the withdrawal of this type of drug.
Mum has been let down very badly, Thank you NICE!!
Kathleen

 

[Dearth]

Then 6 weeks ago the galantamine was stopped, the only reason being she had been on the same treatment for three years and it was "time for a change."

Sorry to hear about this Kathleen, this must certainly be distressing for you all.

I quote the above, because for me I fell that certainly is not a good enough explanation... the other day I had a can of Guinness because I 'fancied a change' - that's fair enough, that's choice on something that's not really going to affect my life one way or another... but where medication is changed I feel that you should be given more information!

I can only assume that this is down to a Doctor's decision and suggest you try and get more information as to this, followed by a PROPER explanation rather than being 'fobbed off' - if their were side effects issues/the medication was no longer effective then I'm sure they should have told you properly and honestly.

I'm sorry to go on, but this infuriates me - seriously... if you have any further info. re: this, please reply here because I'd like to know how you go on with this.

I'm only sorry that I can do little other than 'chip in my two pennorth'.



N.

 

[Kathleen]

I spoke to the psychiatrist yesterday and he was not thrilled to have his decision to stop the galantamine questioned.

I was unhappy that he had not, as on all other visits, let us know in advance that he was seeing Mum so one of the family could be there. That rang alarm bells straight away.

I had no straight answer as to why the galantamine had been stopped, she had no adverse effects and although she was starting to get restless in the afternoons and early evenings the staff had worked round that by altering her routine, so I can see no other reason for stopping it other than the government guidelines on the use of these types of drugs.

I told him how Mum is now and he just said, "its the progress of the disease."
To say I am angry and upset is putting it very mildly, but I can see no way round this one and will just have to sit back and watch Mum spiralling downward I suppose. It is such a waste of time to argue with someone who won't give a straight answer to a question.

I also asked if there is any literature on the effects of stopping the medication, but he said he didn't think so. it is the lack of information that I find hard as I cope better with knowing what to expect as far as anyone can when dealing with alzheimers.

Until this latest episode, the psychiatrist was so supportive to all of us, and really seemed to be on Mum's side in all this, now I feel he has cast her adrift and the alzheimers will drag her down into its murky depths and there is not a thing we can do about it.

Thank you for your interest, although it won't alter Mum's situation it is nice to have someone else on her side.

Kathleen
xx

 

[Brucie]

Ah, it's such a wonderfully easy opt out for everything, including incompetence and cost-cutting, isn't it.... "progress of the disease".

While the disease certainly does progress, I see no reason to discontinue medications until they manifestly stop helping. Except £££

No, they don't like being questioned either. Doesn't mean we stop doing it though!!!

I worry about many of these so-called experts. It may simply be they have no communication skills, as well as no hands-on knowledge of caring with someone with dementia. That excuses nothing.

 

[Dearth]

No, they don't like being questioned either. Doesn't mean we stop doing it though!!!

I fully agree to that!

These people are NOT Gods... maybe you can get someone else involved? Another opinion?

Now I'm not really sure how best to go about this re: your Mother's care but maybe the good people at the A.S. Helpline can help?

You have EVERY RIGHT to question someone's decision re: her care... and if the Psychiatrist doesn't like it, then 'Boohoo' - care is supposed to be 'Person Centred' NOT 'Professionally Led' in my opinion!

Please let me know how you get on with it... and keep on at 'em... I know it's easy for me to say, but I can honestly say, that is what I would do every time.



N.

 

[Sandy]

Hi Kathleen,

I have added to this topic on the other thread that you started:

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?p=20830#post20830

Take care,

Sandy

 

[Kathleen]

Hello Again

One week after my last post about Mum's decline post-galantamine and an up-date for you.

The psychiatrist has been asked, by us, to see Mum to assess her, but says as he saw her only a few weeks ago there is "nothing he can do for her unless she becomes distressed or agitated!"

Mum seems to have lost all sense of reality and will happily sit in the same place hour after hour in her own isolated world. She has lost most of her speech and understanding of what is said to her. Incontinence is increasing too so she is losing her dignity. She seems to have switched off somehow.

Yes, she seems relaxed and calm, yes, she is not showing adverse symptoms, but my Mum is disappearring in front of us a bit more every single day and that makes me so very sad. We could have held onto our smiling and dancing if muddled up Mum for longer if she had been treated as a person, not a statistic.

Idon't know whether to be sad or mad, maybe a mixture of the two, just for a change.

Kathleen

 

[Dearth]

So sorry to hear about all this Kathleen and can't think of anything to suggest... other than to get someone else to see her - and I don't know how feasible that is for the area where you live/if there are any other factores involved.

Did you get in touch with the Alzheimer's Society Helpline?

If not - here's info. to save time locating:


The number to dial is 0845 300 0336
The helpline is open from 8.30am to 6.30pm Monday to Friday.

If I find ANY info. at all that might help I'll let you know, but at this moment I can't think of anything.

Take care.



N.

 

[wendy43uk]

ebixa

hi all ebixa seems to be helping john i hope so i have been told nothing will help if this dose not he took arcept till it just stopped working i am hoping to keep john at home a lot longer than i hoped as he was just going down hill all the way his mini mentle went from 22 to 14 in 12 weeks and he went very slow if u ou no what i mean hard to eplain as though a clock is slower qas though the battary has been taken out i hope it carrys on working

 

[Dearth]

Thanks for posting Wendy - glad that Ebixa seems to be working for John.



It's also great to see this thread is still going too - such a great response... I didn't know I'd receive so many replies - thanks again everyone.

N.

 

[ailyn2611]

update on Ebixa

Hi all,

Just an update since I last wrote in July 2005.

Mom started on Ebixa Dec 2004, worked impressively after a month, and as you can see, was still working very well in July 2005.

It's now over a year since she's been on Ebixa (and Sertraline and seroquel [Quetiapine]). Unfortunately over the past couple of months, she's showing deteriatiation towards the time before she started on Ebixa. During the past year her memory continued to worsen gradually (problem often overshadowed by her other symptoms). She's beginning the regress to her childhood /younger days. Suppressed emotions, guilt and thoughts are surfacing. More frequent episodes of extreme rejection, anger, depression, violence and disregard are happening in the past couple of months. Dad is the main carer is getting depressed, anxious(about the next episode), physically exhausted and out of ideas to pacify Mom, who requires constant attention. Her 'episodes' come about particularly when she's 'bored', which is often, as she has no attention span to do anything.

Would like to hear from others experience with longer experience with ebixa. Would also welcome eagerly any other ideas/advice!

Regards to all.

 

[Michael E]

Hi all,


It's now over a year since she's been on Ebixa (and Sertraline and seroquel [Quetiapine]). ... She's beginning the regress to her childhood /younger days. Suppressed emotions, guilt and thoughts are surfacing. More frequent episodes of extreme rejection, anger, depression, violence and disregard are happening in the past couple of months. Mom requires constant attention. Her 'episodes' come about particularly when she's 'bored', which is often, as she has no attention span to do anything.
Would like to hear from others experience with longer experience with ebixa. Would also welcome eagerly any other ideas/advice!

I have edited your quotes Ailyn to reflect what is happening with Monique - hope you do not mind...

I have had concerns about Ebixa for a while now. Monique started it over 6 months ago and the results were good and she showed greater awareness withing days..... However after arriving at the full dose a month later and in the following weeks the same symptoms as your mums began to appear. Those symptoms have increased in strength ever since. I do actually wonder if she is happier with or without this drug? It seems to me the greater awareness allows greater unhappiness........... I just worry about it - have no solutions to offer - and also do not know if it is in fact Ebixa that is causing these problems or just the 'normal' advance of AD?

regards

Michael