1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    Hi

    Mum was originally on a drug (think it was exelon), this got changed to (forgive my spelling), I think it's gelatamine. Now she seems to have declined faster tha expected and they think she was possibly responding better to the first drug.

    It seems that they won't put her back on the original drug as it'll no longer have any effect.

    Again, I've forgotten the name of the wee test that the nurse gives her...but I know you'll all know the one, but it seems she couldn't get the date/day of the week.

    I wonder about the validity of this test, Mum has taken an extreme dislike to the nurse as she feels that she's there to try to catch her out and treat her like a child. This dislike, I think is a good thing as to me, it seems like she's aware of why the nurse is there and it irritates her. However if she wasn't bothered by her maybe it would mean that her awareness wasn't as good as it was before.

    Sorry...veered off a bit there. Anyway I wonder if she isn't a little belligerant when she takes the test because of her attitude to the nurse. She may not know the date, but she always knows what day of the week it is. Dad has been asked to go and see the psychiatrist on his own today (we're not sure why Mum hasn't to go with him), I imagine we'll find out more from him.

    Is it normal for people not to go back onto a drug they've had before? Also, does anyone else feel that this test doesn't give an entirely true reflection of the progression of the disease? Surely on any given day, mood, general health etc can all affect the outcome of this test?

    Thanks in advance!
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    No need to thanks in advance.. This is a stuation we may all go through. Everyone's experience of the drugs is different. It may be that they advise use of the former drug.......

    Who knows which is the right medication. Trial, and error, I am sorry to say. Keep us posted.. Love, Connie
     
  3. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    Well, it seems that they're considering Aricept now. The phsyciatrist isn't happy with Mum's progress and is trying to get Dad to get some help in and someone to take Mum out now and then.

    Neither he or she is having it. Mum doesn't want someone she doesn't know to take her out, nor does she want to go to a day centre where she'll see what's around the corner. I think Dad could do with a break but he won't be budged on this one. They're setting the wheels in motion anyway, in case Dad gets ill (as he has problems with his eyes and chronic asthma). Mum can go out on her own at the moment and she goes for a wee potter round the shops.

    Dad has to go back to the psychiatrist with Mum in a fortnight so we'll see what happens with that.

    He's also being encouraged to go to a carers meeting and finally someone has got through to him on getting power of attorney. I think for each thing he does it upsets him as he feels like he's taking more and more of Mum's independence away.

    I'm afraid I spent Saturday night blubbering away, it's just so hard. For a while I hoped that there would be a cure, but I think it's just wishful thinking.

    Will post again when she's been back at the psychiatrist.
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    ...just for the record, we were just the same.

    Jan resisted the Day Centre though we did try it. After a couple of times she was banned for being disruptive, and I was SO glad. I hated taking her there then having them distract her so I could sneak out and sit for two hours doing nothing, just worrying. It was one of the most stressful things for me of the lot, deserting her. That is also why I resisted respite [and the only time we tried for that they couldn't supply it anyway...another relief for me].

    Boy, could I have done with a break. But the only break I wanted was with Jan as she had been.

    So I wouldn't be budged either, even if it did ultimately take me down. It was Jan I was concentrating on and a collapse on my part would have been a bit of a relief as it would have taken things out of my hands; I couldn't have blamed myself.

    Do try these things, but don't be surprised if they don't work.

    Oh, and there was nothing that would have got me to a carers meeting. Firstly I'd have to have left Jan [and HOW could I have done that with no help available?], and secondly I had enough on my plate without worrying about the problems of others. Or so I saw it.

    Time sorted all these things out for us.
     
  5. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Mandy hi,

    Probably won't help you but I can relate an awful lot to what is happening with your mum because so many of the symptoms are whats going on with my wife - we have just been to the neurologist who persuaded Monique to do some 'tests' to which she begrudgingly agreed... Now a few days later there is nothing wrong with Monique's short term memory - she hate the neurologist 'that woman' to bits... She may forget by the time the next 6 month visit comes up but I suspect not!! Interesting how selective the memory can be. Part of me wonders if there is any point at all to the tests - once a diagnosis has been arrived at... Christine Bryden makes that point strongly in 'Dancing with Dementia'..

    Monique also finds keeping her awareness of the day and date very important - marks it off on a special calendar and asks me several times a day to confirm it - the Sky TV magic stick makes a blue patch with the info appear on the bottom of the screen to confirm it.

    she also goes out on her own - sometimes I send her to Monoprix - about 100 yards away for a bottle of wine or milk - takes a 10 euro note - I am certain has no concept of the money - does talk about the price - but I suspect without understanding it. That's all she does and even that is getting less frequent - finds it demanding and asks me to go.

    Like your dad I have a bit of a health issue - I have peripheral neurology which is an attack on the nerve endings - just makes a few parts of my body real painful - but I get by with acupuncture rather than pain killers - works for me much to my surprise! I think all these things are part of getting older - bits of the body stop working so well but its all part of life's rich pageant - Need to go sailing again soon... I have been going down the Power of Attorney road as well - just need to fill in the forms and get signatures on them - so much going on at the moment I have not got round to it but will do so. Sort of empathise with your dad - I really try to keep things as 'normal' as I can - life goes on and it may be wrong to get into 'overkill' with doing everything for the sufferer - there is going to be a time when it is essential.

    The drugs problems are a real issue - We are now on a new one - EBIXA - it seems to make Monique less confused - which is what it says on the box it does - she is sleeping less and seems more aware of things - the only downside is that the hallucinations seem to be getting worse - and the night awakenings with strange people around much more frequent but that was beginning to happen before EBIXA so who knows - doubt if any of the medics really know for sure.... In fact I am certain they just try things and wait and see......

    Glad your dad is talking to other carers - I find visiting this site daily very helpful - good to know there are others around with the same problems - or frequently much much worse and also a great source of solutions to problems... If your dad is into computers he might enjoy it too- quite a lot of men on this forum which you would expect to be dominated by women - or is that sexist???

    Fair winds and safe landfalls - worse things happen at sea - I think!
     
  6. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    Well, I would've thought that nothing would have got Dad to a carers meeting....he's a private person and I don't imagine him ever discussing things with strangers. I'm surprised to find he's considering it. I think, largely, he's thinking of it because they have a lawyer speaking one week etc.. It takes place at the home that Mum would go to (if he allows it.....that's another thing that will never happen....will cross that bridge if/when we come to it).

    As for Dad and a PC....no chance! I work in IT and have tried to convince him to get one due to the resources it will put at his disposal. Sadly, it's up there along with Mobile phones for my Dad....the scourge of the millenium:)

    Yes Michael, I agree the drugs 'thing' does very much seem to be trial and error, I hope we all find one that will work in the long run. Sadly none have helped Mum at all so far (there have been 3 plus an antidepressant).

    Brucie, yep, I can appreciate why he doesn't want her to go. It will probably worry him more than benefit. It's his health as much as hers I worry about. So hard.

    Again, Thanks to all of you for your replies, sometimes wonder what I'd do if I couldn't 'vent' here.
     

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