Stopping medication

[daughter]

Hi, Can anyone tell me the legalities of stopping Alzheimer drugs without informing relatives? I've only just found out that Dad is now not being given Exelon, nor any Alzheimer medication, and I am unsure if his recent decline is due to this, or the fact that his other medication (for aggression) has been increased. Should I just accept it because, after all, he's never going to get "better". Mum says that it's only for the earlier stages, but I'm not so sure - who decides my Dad is in the latter stages? No one has told us that either. I guess we would have agreed to it but I'm annoyed we weren't even told, let alone consulted.

Thanks I needed that!

 

[Margarita]

who decides my Dad is in the latter stages

I would say the next of Kin that would be your mother ?

Should I just accept it because, after all, he's never going to get "better".

I personnel would not , but that is only a decision for you & your family to talk over ,

I did not no that could happen about stoping medication with out telling your family . have you ask any Doctors why they have stop it ?

May be someone on TP has been in your position & know more.

PS Why not phone the AZ society & also ask them ?

 

[Kathleen]

Mum is experiencing a dramatic decline since her galantamine was stopped last year. Her care manager rang to tell us as she herself was unhappy with the decision, having seen the effects of stopping such medication on other residents.

We had always been present when he visited previously, but had no idea he was visiting that day, neither had the home.

The psychiatrist called at the home unannounced and said it "wasn't doing her any good any more"............. well it wasn't doing her any harm either, but despite numerous meetings, the decision was never reversed.

My advice would be to ask exactly why it was stopped and what medication he is now going to be on.

It is just one more "right" we have to fight for!

Good luck

Kathleen

 

[Nutty Nan]

Dear Hazel,
For your own peace of mind, I would ask 'why' and 'what next'. I don't know about legalities, but it would seem only fair and 'proper' to involve relatives in major decisions such as this one, even if in reality, there is no other option. Communication means a lot!

I have shared our own experiences in other threads, but just to repeat: when my husband's new consultant decided that Aricept had to be withdrawn immediately on medical grounds (which I still don't quite accept .....), I tried hard to convince him otherewise, but I 'lost the case', and had to watch my husband's decline on a daily basis. It took several weeks and meetings to pursuade the consultant to give us a pres!cription for Ebixa, and I am relieved and delighted to say that we have witnessed a great improvement - not back to the state of affairs with Aricept, but at least we can manage again, with lots of help. Our loved ones need us to fight their corner.....

Hazel, you may choose to accept the situation as it is, knowing that your Dad is in good care. However, if you feel that his decline is unexpectedly sudden, then check with the consultant - you can't lose anything by asking.

Good luck!

 

[daughter]

Thank you

Thanks for your replies.

Why not phone the AZ society & also ask them ?

I did phone, Margarita, and as suspected they said that it can happen that the doctor takes that decision.

well it wasn't doing her any harm either

That is exactly how I see it, Kathleen, but then I'm no expert I guess.

Our loved ones need us to fight their corner.....

I want to fight, I do, Nutty Nan, but at the end of the day it's not exactly just down to me. He's my Dad, but if Mum decides she'll go with the decision, then do I make a fuss and upset her (even more)? Mum is seeing the pyschiatrist on Monday. I couldn't get out of work that day, so won't be able to attend (more guilt!) But Mum is very capable for an old gal, bless her, and sharp as a tack! She will have to get a bus and a taxi to the hospital and she has all the things written down that she wants to ask, including why Dad's Exelon was stopped. She is probably the best one to go anyway because I might suddenly decide to blow a fuse and alienate the psychiatrist!

 

[rummy]

Hi Hazel,
We had a new psychiatrist tell us that Aricept had done all is could and he advised taking Mom off of it. We went back to the original psychiatrist and he was mortified at the idea of taking her off. He said she would drop like a rock and there would be no getting her back up to the level she was on with Aricept and Namenda. And she is in advanced stage. She is declining but I think she would be in a nursing home right now if it weren't for the medication.
Just our experience with it. You are right though, nothing is a cure and they will get to that decline with or without meds. Could be that the side effects were an issue?
Good luck with it!
Debbie

 

[Nutty Nan]

"nothing is a cure and they will get to that decline with or without meds."

That is how our CPN explained it: when Aricept is stopped, the patient drops to the level he/she would have been at without the medication.

To me, that sounds as though (providing there are no problems and side effects, of course) the drugs should be continued as long as possible .......

(I am wearing my keyboard out writing letters to all and sundry about the decision by NICE!)

 

[Margarita]

So what about Exbixa ? after Aricept stop working

As I thought Exbixa was for the Middle late stages like my mother

was that not an option for anyone to take Exbixa

ps

So it seem the doctor have the final say with people with dementia, seem very unfair .

Hazel if you don’t mind how is you dad or should I say how bad is your dad ?

 

[Nutty Nan]

Dear Margarita,
My husband is on Ebixa now, and thankfully, has responded reasonably well. Sadly, I realise that this won't be effective 'forever', but the longer we both have some 'quality of life', the better ......

 

[daughter]

Thank you all for your replies.

How bad is my Dad, Margarita? I'm not sure how you measure these things. The Head Nurse from the nursing home said he looked a lot better to her and ready to go back to the nursing home (but she meant compared to when he was being aggressive and had that haunted look.)

To me he is worse, always worse. In the past month he has declined, but I cannot say if this is due to him not taking his medication, or the Exelon being stopped, or him going into hospital, or having new medication to stop his aggressiveness.... it goes on and on and I can't work it out!

To me, that sounds as though (providing there are no problems and side effects, of course) the drugs should be continued as long as possible .......

I would agree NuttyNan except... I phoned Mum after work, she said she asked the doctor about stopping the Exelon and he said it is only given to keep people out of nursing homes (so how come Dad was still having it IN the nursing home? But when I started to say things like that Mum said she doesn't want to make any more fuss).

Mum says to me that Dad looks 'awful' (zombie like), bruises on his hands and arms, just sitting in a chair and she also said she thinks he won't be with us much longer. I think my Mum has given up.

So what about me? As I said before, if I make a fuss I upset Mum, alienate the psychiatrist and what is the benefit to Dad? Maybe it would buy him some more time, or maybe it is too late. I don't think I'm strong enough to fight this on my own, nor to really know what is best, sorry to be so negative.

 

[rummy]

Hazel,
It is hard to be positive about this negative illness. The only thing I think we know for sure is that the disease is progressive and no matter what meds our folks are on or not on, they will get worse. Some sooner, some later. That is pretty negative ! The only positives are in the little things....a smile, a hug, time well spent. etc.
I think there comes a time when we have to ackowledge that we have done the best we could and what is left is safe, warm and comfortable.
Meds can keep them here longer, some times they can keep them out of a nursing home longer. But the journey is the same, just a different route.
Just do what is best, what gives your Dad peace and try to put yourself at the top of your list. And when I get to the place you are at......you can tell me all of this back!
Hugs, Debbie

 

[daughter]

Thanks Debbie for your wise words, I needed to hear them. I just hope I am doing what's best for both Dad and Mum. Love from Hazel.

 

[Amy]

Hiya Hazel,

just sitting in a chair and she also said she thinks he won't be with us much longer. I think my Mum has given up.

Just to depress you further, the manageress at the NH was telling me about two patients who had been bedridden for the past 5 years. They eat. are turned hourly and sleep. My heart sank.
There's no knowing how long the final stages can last.

I also have to tiptoe around dad's wishes. Get's quite touchy if I suggest taking mum up to her room, or moving her into a wheelchair; I was going to take some witch hazel for her bruising, but he didn't want me to do so. He seems to view it that now she is in the NH we have to ask permission about everything - it does my head in.

I don't think I'm strong enough to fight this on my own, nor to really know what is best, sorry to be so negative.

You just get tired of fighting, don't you?

Sorry, I'm not saying anything to make you feel better about the situation. All I can say is that you are not on your own.
Love Helen.

 

[Sandy]

Hi Hazel,

Never easy when two problems are wrapped up together - what's best for your father medically and how to support your mother in her ongoing process of coming to terms with what this terrible illness has done to her husband.

The doctor's comment about Exelon not being appropriate for a patient in a nursing home sounds more like an economic argument rather than a purely clinical judgement.

It is this same argument that forms part of NICE's economic model (which they refuse to disclose the precise details of) which results in the recommendation that Aricept and such like are only suitable for people in mid-stage dementia.

Not too long ago, there was a study done on the effects of Aricept on people with late stage Alzheimer's. One group was given a placebo and the other was given Aricept. There was a short report of this study on the Alzheimer's Society's research news page : http://www.alzheimers.org.uk/Research/Research_in_the_news/060323aricept.htm (not brilliantly constructed as it assumes the reader already knows what the study was about).

Another report can be found here:
http://www.nelh.nhs.uk/hth/donepezil_alzheimers.asp

That last link is kind of interesting - I'd never come across the National Library for Health before.

I'm not suggesting that you do anything specific with this information. If the psychiatrist is sceptical about the benefits of Exelon at a given stage in AD, it's doubtful if one paper in The Lancet is going to have some huge impact on his/her opinion. On the other hand, there is something to be said for not letting the medical profession assume that families of AD patients (or any patients for that matter) will accept their verdicts without reasonable and informed challenges.

Take care,

Sandy

 

[rummy]

I just hope I am doing what's best for both Dad and Mum

Hazel,
Your heart and motives are in the right place. You just do what you think is right and all will be ok. Sad thing is that sometimes there are no good decisions because the choices stink! So there again, we just do the best we can and......
remember the old serenity prayer.
Grant me the serenity to accept the things I cannot change.
Courage to change the things I can and the wisdom to know the difference.

Hugs,
Debbie

 

[Sandy]

Hi Hazel and Debbie,

Just wanted to clarify that I put that information up on the research regarding late stage AD and Aricept for anyone who might be facing this issue in the future and felt they needed a bit more info before drugs were withdrawn.

I really don't know at all if this information is relevant to Hazel's dad at this point, but at least it might answer some of the niggling doubts regarding the change in her dad's behaviour. It doesn't of course say anything about how productive it would be at this point to re-start on Exelon or to push for Exbixa (the drug for moderate to severe AD http://www.alzheimers.org.uk/After_diagnosis/Treatments/info_drugs.htm)

Being an ex-pat American Debbie, I really don't know what the situation is at the moment in the States regarding AD drugs. I have heard that some HMO's are being much more cost-conscious in general than they were in the past. One of the key reasons why the info I posted is so topical in the UK is that NICE (kind of like the FDA but with the added task of evaluating the economics of treatments as well) wants to restrict Aricept and the other AD drugs to just those in the moderate stages of the disease.

Take care,

Sandy

 

[rummy]

Hi Sandy, I found the sites to be very informative and coincided with what my Mom's neurologist told us about taking Mom off of her meds. He said she would drop like a rock and once that happened there would no getting her back up.
My folks are very fortunate inthat my Dad is a vet and gets all their meds paid for by the Veterans Association. So I don't have any experience in trying to get the medication through conventional insurance or other government agencys ( Medicare, etc) I know with our own private insurance we have to do battle to get drugs like Celebrex. It is horrible that economics plays into the care of anyone getting the medication that they need! I highly suspect that they feel since it is a disease that isn't curable, is ultimately fatal and that the meds benefit varies from one person to they can dictate a cut off policy for it! That they use the MMSE was alarming to me since it is a questionable method for even diagnosing the disease. The neurologist told me that it is just a tool in the diagnosis and he hesitates to even tell people what the score is because it really isn't all that relavent. It only helps him in making his evaluation but is by no means the ultimate in AD diagnosis. I suppose as flawed as it is, it may be the only benchmark an agency has for evaluating a patient. But wouldn't you think they would let the doctor decide !
Debbie

 

[daughter]

Thanks for your posts, Helen, Sandy and Debbie and for the links Sandy.

It seems like we're back on the roller coaster again, being winched up for the next spin! Dad was returned to his nursing home yesterday. I went to see him today and he's changed again - no longer in a dazed stupor, he is now back to the Dad who will sing, play catch the ball and go for a walk around the garden. Amazing! I could almost believe that this last month didn't happen. Perhaps it was just the sleeping tablets that the hospital had given him every night while he was there. Another reprieve, who knows for how long, but Mum is happier now Dad is back so I'm not even going to bother guessing.

As to the medication, I am still undecided what is best, although I'm guessing we wouldn't stand a bat in hell's chance of getting Exiba on the NHS, so it's probably not even worth asking. Thanks again everyone.

 

[carol]

If you don't ask you don't get! My mother in law was prescribed Ebixa approx. 1 year ago on the NHS, she is also on 10mg of Aricept per day.

Carol

 

[Margarita]

If you don't ask you don't get!

I agree with carol go for it , all they can say is yes or no but at lest you gave it a go as in asking , And if they say no ask why ? it could be that its not suitable for your dad