New Medication- HELP!!!!

[Tressa]

My mum was finally reviewed again by her Consultants HSO who found she was very good on general conversation but failed very badly on the actual assessment. I was unable to be at the assessment because he rang one hour before arriving to say he would be there so I had to have my sister attend instead. My mum has been very bad tempered lately, always did have a temper but lately she just starts an arguement for no reason, she argues about everything, cant get her to eat or drink or do anything really and it has been a struggle but I have found that I argue back with her and then it ends up in a full scale row with the two of us getting very upset. I decided I had to deal with this better and have been trying not to answer her back and not trying to force the issue and so far it has been working. She is still bad tempered but calms down when you dont confront her. Anyway, (sorry for rambling) another sister showed up and they both told the doctor that mum was aggressive and he prescribed SEROQUEL. I was not happy about this and called him and explained that mum wasn't being aggressive just grumpy from the fact that she had nothing to do all day and the fact that she doesn't know she has Alzheimers but knows there is something wrong and is probably frustrated at the fact she can't remember things, and that I didn't help the situation but I was trying to improve it. An Annual review was being held with mum's Care Manager and the 'family' (what a joke!), so it was discussed at this meeting and her Care Manager said it was kinder to mum to be put on these tablets as it would stop her agitation. I feel that this is just mums fighting spirit and is all she has left of her old self and it is not our place to drug her to get rid of this just because we find it difficult to cope with. It was then agreed to give her 25mg in the evening to help her sleep as the doctors have her on sleeping tablets (something she has needed long before AD came along) but these aren't working, just confusing her at night and she has just on two occassions got up in the middle of the night and went outside. But they want to give her 25mg in the morning as well and say it wont make her drowsy during the day. I read up on the tablet on the internet (it can be a curse sometimes, too much information!!) and this is a very scary tablet, apart from the awful side effects which if an AD sufferer experienced would be terrifying for them, I found two websites from law firms in America wanting to start class actions on the makers of the drug because it has links to diabetes.

My mum is a fighter and is a very difficult woman to deal with but she is 77 and has had AD for nearly 10 years and is still quite independant, I dont want to take this away from her and feel it is terrible to even think of drugging her just to make her more manageable. Her care manager thinks it's kinder on her because it would be worse to let her sit and be agitated, but she is bored, nobody takes her out, she doesn't get any stimulation during the day when I am at work. I am just torn as to what to do, is it kinder to her to do this and is this drug safe because it doesn't sound as if it is. Has anyone else heard of it or had any loved ones taking it. My siblings are divided on the subject as they are on everything and are of no help because they dont know her like I do. Any advice would be greatly appreciated because I really dont know what to do for the best.
P.S Sorry for going on so long.

Thanking you all in advance.

 

[Brucie]

Hi Tressa

this is a fairly typical situation I think.

My feelings are that you are doing the right thing in deciding not to confront her. Just agree with her, no matter how bizarre the conversation becomes. There is no point in doing anything else.

My normal stance is to resist any medication that is not absolutely needed [that is for me or for Jan, though her medications are now out of my control].

Regarding medication, I make a difference between 1) making a person more manageable and 2) ensuring a person is safe.

Where a person's agitation or whatever puts them at risk, then, after looking for any other solution that works [padding, locking doors, etc] and not finding one, medication may well be called for, but at lowest dosage that works for that person.

[a GP in my surgery once prescribed Seroxat for Jan and after taking one pill she immediately began violent twitching and I took her off it at once. Another doctor said the dosage was way too high, but I never let her on it at home again. She has since been on low doses at her care home]

If the person is at home with you caring for them, and their behaviour is endangering your ability to do that, then you have the choice of 1) considering medication on the same basis as above, 2) having the person assessed [though assessment should really come before prescribing something, that doesn't always happen].

Does your Mum have someone in to check on her while you are work? Sounds a little like she should. There is a stage between initial symptoms and eventual major care [whether at home or in a home] when things get quite dicey.

Very best wishes.

 

[Jude]

Dear Tressa,

I absolutely agree with Brucie on this. In an earlier post this week [?] I mentioned that our local GP suggested that I dose my father up on Diazepam every day to sort out his agitation. I decided not to do this for a very similar to yours, in that it would break his spirit. Ultimately it came down to the 'why' of him taking it. Was it to make my life easier or his????

Perhaps you could have a word with the Consultant Psychiatrist on this issue? Just follow your gut feeling and if in doubt, don't.

Best wishes,

Jude

 

[connie]

New medication.

Dear Tressa,

After a very bad spell this summer, family problems, Lionels consultant decided to pu him on a mild antideppressant. As he is on the full dose, 6mg twice a day of Excelon, I was reluctant. However the new medication, Sertralin, has worked in as much as it has reduced some of the complusive tendancies that were getting worse.
I was told that Lionel would only stay on this drug for 6 months, but I hope that he does not come off as he really is so much better for it.

Hope this helps, Connie

 

[Mjaqmac]

Dear Tressa

Hope you got my PM.

This drug has many side effects and is one in the family of neuroleptic drugs that is currently trying to be banned in dementia, in parliament. Hopefully soon these drugs will no longer be allowed to be given to dementia patients. I have sent the e-mail from the main website of Alz Org to my MP trying to get the bill passed to stop the use of these drugs in dementia patients. It would be great if others would join me. I feel very strongly about this particular drug.

I took my mother off it after 5 months but unfortunately there have been lasting side effects, such as tremors and clicking of the tongue.

Please try to find something other than this drug. It turned my mother into a zombie, and almost killed her in the assessment unit where it was being administered by the consultant. But we got mum back to almost normal (with dementia of course!) when it was stopped. As I mentioned in my PM, this drug is the same thing used in a tranquilizer gun to fell wild animals.

It shouldn't be allowed. Would the consultants like it administered to themselves?

 

[Tressa]

Thank You

Thank you to everyone who replied to my plea for help.

Bruce, I have been to alot of local Alzheimers meetings and have spoke to relatives of a loved one with AD and have read very many posts on this website but haven't found anyone who has had a loved one stay as good as my mum has for the length of time she has had AD. She is still very independant, probably too much at this stage and would need more assistance but is determined not to be "treated like a child." One or two family do pop in some days, and care workers are in twice a day and then I go to her straight from work. She does live on her own but we cover all the nights, and thankfully we haven't met many major problems. She is getting worse but it is very slow thank God, but this thing with her mood and these tablets is giving me sleepless nights. She isn't agressive, just in a bad mood and is always ready for an argument but to me that doesn't warrant putting her on these tablets.

Jude the problem with going to her Consultant Psychiatrist is that she is the HSO's boss and he had to have passed it with her, and I feel that once you say you 'read it on the internet' they become very patronising and roll their eyes. My gut feeling says no, but other family members want a yes and now the bitching and fighting has started even though I am Mum's main carer. But if I say no, what if I am wrong, how do I really know what is best for someone with AD.

Thank you Connie for your reply. It's just the idea of 'doping' someone when they dont know it's being done to them, and this drug has very scary side effects.

Magic, sorry, I didn't get your PM, dont know if it was something I did wrong and lost it, still finding my way on Talking Point. Thank you for your reply, it confirms alot of what I have read about this drug. Will you send the PM again? By the way how are you and your man getting on, you sent me a lovely reply on my first posting on TP, hope all is going good, it is difficult trying to balance a relationship and caring for someone with AD.

Thank you Nada for your reply, read the links. I find neither myself or my mum is at a point were we need these tablets. She does and always has had a problem with sleep and her doctor put her Zopiclone, it now doesn't work, just adds to the confusion and now we are having to try and wean her off them. I feel sometimes that with elderly patients and even more so who have Alzheimers that they ignore the persons basic human rights and treat them as if they are dead already and it doesn't really matter what you give them or what effects it has on the person because after all they have AD and won't know the difference anyway. Maybe I am wrong, but that's the feeling I get from the medical profession.

Anyway, again thank you to all and if anyone thinks of anything else please will you drop me a wee line as I feel as if no one else wants to listen.

Tressa x

 

[Jude]

dear Tressa,

If I was you, then I would do what I thought was right under the circumstances. Things may change later. Stick to your guns if you can.

Jude

 

[Mjaqmac]

Der Tressa

Have tried to send the PM again, but I'm not too good with computer tech myself, I just about manage to post here!

My man and I are hanging on rightly. He is a kind hearted soul and I seem to cry a lot, he's not like some men when the tears come, he's very good and comforting. But it has been a little difficult since he's been back as I'm so tired, and I sometimes just want to spend time alone when I get it.

I'm with you all the way Tressa. You have an instinct (as I had with my mum) that this drug is wrong for her. Go with your heart, there will be something else not as dangerous as this seroquel. I am of the very strong opinion that these drugs should be banned for dementia patients, I can have that view as I have had personal experience of what this drug did to my wee mummy.

Never mind the rest of the family, they can give their opinions when they have put in as many hours of care as you have.

STICK WITH YOUR GUT FEELINGS.

 

[Brucie]

Hi Tressa

It is really good news that her condition is deteriorating so slowly, so try to enjoy the better days to charge your batteries so you can handle the times when you may need to bite your lip at present.

For the moment, just maintain your watching brief, but why not try and keep a form of diary? This will help you remember when this or that happened, and on looking back, it will help you to spot any improvements or otherwise that much more easily. Doesn't need to be a Pepys jobbie, just a line or so.

Best wishes

 

[Norman]

Tressa
your mother sounds very much like my wife at the moment.
She has been on Aricept for 7 years and of late there has been a change.
She has never been a nasty awkward person but of late she can get really nasty with me.
Then later tell me how good I am and what would she do without me
It is like walking on egg shells,she is always ready to argue,is contentious and read to jump down my throat.
She will argue black is white.
The sort of thing "dress on inside out argues that it isn't,then asks does it matter if it is"
I have just had three bad days but today has been quite good.I cannot tell yet what the evening will be!
Most times the way to handle it not argue ,go along with it and remember if you blow up and cuss and rave for ten minutes they will have forgotten it in two or three minutes.
I do not think I want any more tablets for her,yet.

Norman

 

[Brucie]

Life is bizarre isn't it? I passed through that stage four years ago with Jan.

 

[Sheila]

Hi Tressa, it's a relly good idea to keep a diary, it helped us no end. My Mum wasn't on the same medication, but I had her taken off another that has now been discontinued for Vascular dementia because like you it didn't feel right. It's your Mum, you know her best, as the others have already said, stick to your guns and day by day. Love She. XX

 

[connie]

New medication

Hi Tressa, your comments about elderly people, especially those with 'dementia' not really being treated as a person really bugs me.
I have been fortunate to go to two lectures by a 'Dr. Graham Stokes' on 'PERSON CENTRED DEMENTIA CARE & AWARENESS' and he seems to put himself in the patients position and explains a lot of care proceedures which are very good. He has written several books, but I found them to be more suitable for 'care home carers'
I try to adopt some of his ideas when dealing with Lionel, still have some bad times though.
Have just been trying to do the half yearly accounts for the local A.Soc. I am treasurer for my sins.
What is the saying: if you have a job to be done, give it to a busy person. Still less time to dwell on things, keep smiling.
Connie

 

[Chesca]

Dear Connie

There's also a saying about a willing horse..........just make sure you don't carry too much weight to worry the handicapper in the race (Dad is a racing fan and some of it has rubbed off - that is to say I know a little about very little).

Thank you for 'doin' the books for the AS on behalf of me and everyone who needs the society and its workings so very much.

Love and good wishes
Chesca

 

[Chesca]

Dear Tressa

Would 20+ years fall into a similar category?

AD is insidious and its gestation period long. My Mum finally was admitted to a nursing home just after her 81st birthday; she had been suffering, we came to know and realise with hindsight, since her early 60s, but like your Mum, was a very strong willed and determined woman still maintaining her independence, hence her anger if I tried to 'take over' to make her life easier - she knew what was happening alright and she was afraid (her expression was: stop treating me like a dolly (similar to your Mum's objection to 'being treated like a child'). However, eventually she didn't know what was happening, hence, in despair, the consultation. Her nursing home carer staff have come to know of her independence and to the best of their ability work with her, not against her; or at least most of them do. My grief in the face of her valiance stays to this day.

One of the problems is, once you get to the stage of seeking the help of a consultant physco-geriatrician, that the very reason you are there at the consultation is to seek answers. He/she doesn't have the answers you want - that this drug or that drug will make it better, because it won't. As our consultant asked us: you don't want this or that so what do you want me to do? This is the best I can offer you and I know that none of it is what you want to hear but this is as good as it gets. It is going to involve drugs of some sort or another - the likes of Aricept only work for a couple of years. It's a damage limitation exercise, for want of a better expression.

I'm constantly amazed that some sufferers are taking Aricept for many more years.

There doesn't seem to be a 'perfect drug' for AD, it's trial and error - what suits one doesn't suit another and it's a hard road to travel. I try to work on the basis that I would rather have Mum calmer by use of an anti-psychotic drug, in the way I would if she was being treated as a younger schzoid personality, all the while with the opportunity to veto that choice, rather than her suffer the madness and struggle that would ensue for her. There is a price to pay and in considering the cost have to say that on balance seeing her with some kind of peace and leaving her in that state has been, in the main positive - not perfect by any means - but the alternative is so horrible it is a small price to pay but always subject to monitoring.

Having seen loved ones suffering with terminal cancer whereby the medics have said that the one thing they CAN manage is the pain, maybe I am working on this basis with AD - the one thing they can do is take away the torment and primarily that for the sufferer. The only thing they can do is somehow calm the sufferer of AD.

I have learnt one thing though, we do need to work with them and not against them in order to support any research thus facilitate future treatment.

This is a terrible time for you and I just hope you know you have friends and support here.

With many kind thoughts
Chesca

 

[Brucie]

Chesca

and your latest post is the perfect example of how members of TP can help even someone who has been fighting AD in the trenches for over a decade and thought they had it sussed.

Excellent summary and from me, .....thanks.

 

[Jude]

Dear All,

Where do we look after the Aricept ceases to work? Obviously there will come a time when it won't and I am also amazed that it is still having an effect after almost 6 years.

Jude

 

[Tressa]

Another Thank you

Thanks Bruce for the diary idea, I will most definitely try that, it is hard to remember when you try and look back. I have looked at photo's from the past few years and it is amazing how you can see the differences in them. Her physical expressions have changed over the years, it's my mum but its not the old mum if you know what I mean.

Chesca, your post threw the whole question up in the air!! Thank you for taking the time to write the post, everyone is so good taking the time out from what we all know are difficult times to try and help someone else in a similar situation.

Nada thank you for the help on the private messages, finally found them.

Connie, hopefully I will come across one of the books you were referring to, thanks for your post.

Norman, its good to find someone who has a loved one at a similar stage.

Sheila, will try to stick to the guns, but sometimes I think the damn things are firing blanks!!

Jude, you reminded me that there is an outreach worker in a different area that i might be able to annoy, thanks

Magic, thank you for the private message and I understand how hard it is to juggle a relationship and caring for someone, I am sure if we met there are plenty of stories we could swap and compare. If you decide to run away, let me know!!

Hope I didn't leave anybody out, if I did, sorry, wasn't intentional. I shall have to do some more thinking, all of you have definitely give me something to go on, I will keep in touch and let you know the progress,

Thank you all again

x

 

[Mjaqmac]

Tressa, Good luck, this is all so difficult, and worse when you are the prime decision maker. No matter what qualifications someone holds giving you advice etc, you stick to your gut instincts, you are the closest person to your mum, you know her best and know what's right for her.

You will do the right thing for her, the fact you are agonising so much over this shows your incredible love for her, and that you have her best interests at heart. You will find the right road. You've already walked a lot of it.

Will send you a private message when I'm ready to run away, be on stand by, I will meet you at The City Hall.

Love and luck