Let's talk ... drugs!

[Kate P]

Hello people,

I really need some advice.

Mum's had her brain scan and we're waiting for the results - her consultant is on holiday so things are a little delayed - typical luck for us!!

Anyway, I strongly believe that mum has FLD and my understanding of that is that there is no treatment for this but she may be given antipyschotic medication? She's currently on antidepressants that worked for a while but aren't making any impact anymore.

Anyway, even if it's not and it's AZ, dad has said he doesn't want mum to have the drugs even if they're offered.

I'm a little startled by this and am struggling to get much out of him about it. I get the impression that he thinks this will just prolong mum's illness without making much impact and he'd rather just plough through until things are over rather than delay the inevitable - I'm sorry, I know that sounds insensitive but I'm struggling to phrase it any other way.

Of course I think there's a good chance that we'll not be given the option anyway but does anyone have any thoughts on this? Has anyone else refused the drugs?

Kate P
XXX

 

[jenniferpa]

Kate, I sort of see where your father is coming from IF any of the likely prescribed drugs were to extend her life. However, I don't think there is anything available that would do that for any of these dementias: all any of the drugs do are either manage symptoms or improve quality of life for a period of time. Do you think he's aware of that? Take the anti-psychotics for example. Now I know that these drugs can have side-effects such as excessive sedation that might make your father unwilling to consider them, but if she were psychotic (the only reason she would be prescribed them) her (and his) quality of life would be pretty bad anyway. So in that situation, the excessive sedation (which I don't think is inevitable if the dosage is monitored) might be preferable to, for example, paranoid delusions.

I don't think any of us would be happy to extend the suffereing for any of our loved ones, but as far as I'm aware, any persons specific life expentancy is not going to be altered one jot by these medications. We don't know how long any given person will live after a diagnosis of dementia, but I am not aware of any evidence that indicates there is any way to extend that life expectancy through medication.

I think perhaps the most important thing is to try not to back him iinto a corner so that he refuses possible medication from a point of principle. Forgive me, he may not be like this, but some people when they are pushed, end up making blanket statements and then find it difficult to revisit the issue.

 

[TinaT]

We have never refused drugs after my husband was diagnosed as suffering from Lewy Body Disease. He was prescribeded the drug Rivastigmine(Excelon) which he has taken for the last two years. I was told that this drug would help to delay the more advanced stages. Sadly my husband has seriously declined over the last year to the point where he needs 24 hour daily care.

No two cases are ever alike but it is possible that some antipsychotic type drugs may be needed at some point in the progression of your mother's disease to alleviate the dreadful anxiety and possibly challenging behaviour which she may develop. xx TinaT

 

[connie]

These are only mine and Lionel's personal beliefs.

We readily accepted the offer of, in our case, Exelon (Rivastigmine). However as the years went by, and the illness progressed the drug Ebixa was mentioned.

Lionel never wanted to take this. He believed that by that stage where it would be prescribed it really would only be a stop-gap.

His condition badly deteriated in April this year, now bedbound, unable to do anything. We do feel that we had the best years being able to access the drugs early.

 

[Skye]

Connie, I do so agree with you. John had Reminyl from the word go, and it gave us six good years. Now he's on Ebixa too, but it hasn't made any difference at all. The way he's deteriorating now, I think the effectiveness of both is doubtful. I think he'll be taken off them at the next consultation.

I'm so glad he had the Reminyl though.