1. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Just thought I'd write a little (or not so little!) update of our situation as I haven't been on for a little while and we seem to have made some progress (possibly).

    Yesterday, my Nan was seen by the district nurse who came to check her general health (diabetes and incontinence problems) and also seen by a psychiatrist. She was given the Mini mental state exam and did not do well. As I'm sure you're probably aware by now, we've never been given a diagnosis of Nan's condition, but upon leaving yesterday, the psychiatrist told my Mum that it was 'Alzheimers or something linked'. I feel a bit unnerved by this. Although we all knew it was dementia, it's quite hard to deal with the reality that it really isn't going to get any better and what we have to face.

    The psychiatrist asked my Mum whether they had power of attorney set up which they do, and said that he thought they should go about putting into action soon. He is putting his findings into writing, as it was difficult for my Mum or him to talk in front of my Nan, so hopefully we'll find out some more when the letter arrives. He's also arranged for a CPN to visit (at last!).

    Thing seem to be at a real crossroads at the moment, as my parents still both work full-time. My Mum is really doubtful that my Nan should be left alone all day everyday, but no-one knows what to do about the situation. They don't earn a great amount so don't really want to have to pay for services, and can't afford for my Mum to give up work to care. It's also complicated financially to go about putting my Nan into care as proceeds of her flat went into buying our current house so that she could live with us.

    My head's spinning a bit with it all at the moment - sorry for ranting on!!
     
  2. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    Hi Emma,

    Sound like you are going through some difficult times. It is important at this stage to get some professional help which it looks like your are all doing. It just too difficult to make these decision without knowing what options are available. It also good that you already have an EPA in place as doing this at the later stage is very difficult indeed.

    There are a lot of factsheet on the Alzheimers site to help you find out what alternatives are available:

    http://www.alzheimers.org.uk/Facts_about_dementia/factsheets.htm

    A lot of work has been put into these and I for one have found them really useful.

    Take care and I hope the spinning slows down a little.

    Cheers
    Charlie......
     
  3. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    The letter came through from the psychiatrist today, addressed to my Nan (although we haven't shown it to her - she gets very agitated and will certainly not take it in). Made me laugh because it starts "Dear Mrs ...., You will remember that on tuesday 23rd of March we discussed your memory problems." Like she's going to remember! The letter did state, however, that he believes my Nan to have vascular dementia, which is something I always thought likely, but that we've never been told by a professional before. As I said before, he is arranging for a CPN to contact us to discuss what we're going to do. I think we'd all really like to get some day care arranged for my Nan, as she currently doesn't really go out as none of us have the time, which means that we never get a break at home. When the district nurse visited the other day, she asked my Nan if she liked the idea of going to a lunch club, to which my Nan replied that she didn't want to go and that she was quite happy being at home pottering around. aaaaaargh! Surely it's not totally up to my Nan now?? With all respect to my Nan, it's us that need the break - not my Nan! Everything's fine in her world. Am I being selfish here?

    It's my Nan's birthday tomorrow, and we're not really sure how to tackle it, we managed to totally avoid Mother's day (we gave our mum her card and present away from my Nan and she then put it upstairs so my Nan would not be aware). However, whilst I speak, she's just had some flowers delivered from her old workplace, which means that she'll be asking about it all day now. Writing this I feel as though it may sound that we're being mean, but it seems as though my Nan is able to recall certain things - especially if there are cards up in the room, although she doesn't remember anything about them and gets very confused, which causes problems all day. We just want to make things easier for everyone.
     
  4. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    Hi Emma,

    You are not being selfish and you really do have to think of everyone concerned as you can only provide the best possible care when you are all feeling and coping well. The carer(s) is often neglected and that can lead to more complicated problems. It will make it a whole lot easier if you can get a break, especially if it is regular. I think your nan will find it easier if it is a routine break as well. This would also give you all a chance to get some other bits an pieces done and get your breath back.

    Did you get a chance to chat to the district nurse - I would have thought that she would have been able to encourage your Nan to visit the lunch club if she knew your families situation - sounds like a great idea to me!

    Cheers
    Charlie...
     
  5. Fozz

    Fozz Registered User

    Mar 9, 2004
    16
    Ipswich
    Hi Emma,

    No, you're not being selfish or mean ! All carers need a break , not only for their sake but also for the sufferer's sake too. Dementia has to be about the most difficult illness to deal with for families, and the trouble is that everyone who has it reacts inslightly different ways. My Dad has vascular dementia , and like your Nan remembers some things and not others, and surprises us sometimes with his reaction to things. He goes to daycare one day a week at the moment ,we are hoping for more. If you ask him whether he wants to go, the answer is a very emphatic "NO I WANT TO STAY AT HOME". But once he is there he does settle down and the staff are wonderful to him.

    You must get all the help you can as soon as you can, and keep asking for it . Remember that the better you and the family feel , the more patience and care you will be able to give your Nan.

    Good luck,

    Fozz
     
  6. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Thanks Charlie and Fozz for your replies. I know you're right and we're planning to speak to the CPN when they contact us about getting some day care for my Nan. I think, like you say about your Dad Fozz, that my Nan will actually quite enjoy it if she does go out to a day centre. she loves chatting to people, and often keeps postmen, avon ladies, Jehovah's Witnesses busy at the front door for ages!

    My sister and I are off on holiday (can't wait!) on Sunday though so at least we'll have a break for a week (my parents aren't so lucky though).

    It's been a strange week - a lot seems to have happened, although it's nothing we didn't already know and we're still in exactly the same situation as before, it's just that now we know for certain that it isn't going to get any better and that what we have to face in the future won't be pleasant for anyone makes it all seem a bit worse. I know my Nan isn't aware of her dementia, but it just seems so unfair. I don't know who does deserve to live like this but I know for sure my Nan doesn't.
     
  7. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    know how you feel!

    we know how you feel emscub
    we had my dad at home for the past 2 years and he is now in an excellent EMI [elderly mentally ill] nursing home as mum and i could no longer cope. he had a short spell in a psychiatric unit after i had to give them an ultimatum it was either us or him! our cpn's were next to useless and it doesnt surprise me in the least when you quote the letter; of course she wont remember, doh, how do these people get their jobs!!!!
    i am really sorry to hear of your experiences so far, and it must be awful for your Nan too, though you DO need a break, you MUSTNT feel guilty, [thats a tough one i found!] and unfortunately it DOESNT get any easier, anyone who says it does is either lying to themselves or doesnt know what theyre talking about. community care in this country although people all over will say different things, is **** and its thanks to the present government and local bodies that it is in such a sorry state. I do wish you well, you really have to pester those CPNs and other 'social services people' to get what you want, NAG THEM TO DEATH as some are notoriously deaf!!
    my regards to you, it is difficult and i wish you the very best, if you ever wish to sound off, this is the place to do it!
     
  8. Claire

    Claire Registered User

    Mar 31, 2004
    88
    Coventry
    Diagnosis

    Hi Emma

    I have been in the same situation with my Mum, who cannot be left on her own. She is on a waiting list for residential care, on the recommendation of the CPN. As I grew more concerned about leaving her while I was at work, Social Services found her a place at a Day Centre, initially for two days a week. This was a standard day centre for the elderly, and it quickly became clear that they could not cope with her needs. A place was then found for her at a centre for dementia sufferers. She attends for 6 days a week, which allows me to continue working. She really enjoys going - looks out for her minibus on Sundays, although the first time she went she was very tearful. She is collected, brought home, fed and entertained - they have been taken out to a country park this afternoon. She has to pay for this, but the weekly amount is significantly less than her Attendance Allowance. I know different Local Authorities do different things, but it might be worth asking your local Social Services what is available.
     
  9. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Claire,

    Hope you don't mind me asking but how do you arrange the practical side of your Mum going to day care? Things like making sure she's ready, getting her to go to the front door, her getting back into your house when she returns. We've recently changed the locks on our house so that my Nan is able to open the door to people, but they cannot access the house from the outside by themselves and my Mum's worried about how she'll get back in when she gets home from a day centre because obviously the house will be empty and locked once she goes.

    Just back from holiday by the way and feeling quite refreshed and more level-headed! Just wish my parents could get away - they need it!

    Emma
     
  10. Claire

    Claire Registered User

    Mar 31, 2004
    88
    Coventry
    Locks and things

    Emma

    Of course I don't mind - I've had a few problems along the way, especially when Mum was in a wandering phase. She used to go to the door, but wouldn't now. I got a small key safe, which has number keys so you can choose a code. It is fixed to the wall near the door. The carers from the Day Centre know the code, and they unlock the door to get her out or when they bring her home, leaving the key in the safe each time. Getting her ready isn't too much of a problem, as long as I'm up two hours before I need to leave for work. As she enjoys going, she seems quite happy to wait for them, but if she isn't near the door, they will come into the house to find her. The safe is strong - made of very thick metal, and cost about £10 from Argos. As they know she is on her own, Mum is collected first, at about 9, and dropped off last - around 5.15, which I find really helpful

    Hope this helps,
    Claire.
     
  11. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Thanks Claire and Mrs Doubtfire (?!) for your advice.

    I will definitely speak to my parents about getting the key safe that you recommend Claire. We are still waiting for some contact from a CPN (any idea how long this might take?), as we are hoping they will help us to arrange some day care for my Nan.

    We are already claiming attendance allowance for my Nan, so this should help to pay for some day care if we ever get it sorted!

    Having real problems with my Nan's legs and feet at the moment though, so mobility could be a real issue from now on. My Nan has to go back to the doctors on Thursday about this to find out what is going to happen.

    Emma
     

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