1. mandyp

    mandyp Registered User

    Oct 20, 2004

    Been a while since I've posted.

    Mum is on the decline, the nurse was out to see her and Dad today and did that 'test thing', sorry I forget the actual name for it, anyway Mum scored a big zero.

    The nurse isn't happy with the way she's progressing.

    Mum doesn't talk at all really now. She can speak but gets words mixed up. She mostly laughs at everything (whether it's appropriate or not). I take solice in the laughter as it must mean she's fairly content. It'd be so much worse if she didn't.

    The nurse was asking Dad if she could see me and I wondered what that could be for? It's difficult as that means I have to take time off work. I don't want this to sound selfish but I don't really know what she would want to see me for. I only have 2 days holiday left and wanted to keep them for 'emergencies', Dad may have to go into hospital so Mum would stay with us if that happens and that's what I need them for. To explain, my holidays are 'fixed' hence the reason I only have a couple of floating days.

    She is also going to reduce the dose of Aricept to see if that helps with sweating and other 'accidents'.

    She was trying to talk Mum into having someone come over to take Mum out, Mum doesn't want it, neither does Dad.

    Mum's decline is a worry (to say the least), but I'm not sure how concerned I should be about the test?

    Oh dear, I feel like I'm screaming inside!

  2. connie

    connie Registered User

    Mar 7, 2004
    #2 connie, May 8, 2007
    Last edited: May 8, 2007
    Scream away Mandy dear, the louder the better. We shall hear you, that what we are here for.

    I suspect that she wants to see you, maybe not so much for the test, but to see where things may go from here. You could drop her a brief note, rather like you have told us, after all, your life must go on, as ordered as possible.

    As long as you are there for mum and dad, there is not much else you can do.
    Don't stress sweetheart, we all do it, feel we have to jump now. This desease, whilst it can speed up, or slow down, is never a matter of 'today at all costs'.

    Mandy, if I have read it wrongly, I am not trying to trivialise anything. We are here for you. Take care,
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear Mandy,

    I see no reason why this "consultation" couldn't be done by phone. Since I'm in an entirely different country to my mother, this is my standard way of doing things.

    Scream away if you need to.

  4. Sandy

    Sandy Registered User

    Mar 23, 2005
    Dear Mandy,

    I agree with Jennifer and Connie that it would be better if you could arrange to get in touch with her another way - such as by telephone, at least in the first instance.

    Do you know for sure what your company's official policy is regarding time off for family emergencies? There might be some useful information on the Carers UK web site: http://www.carersuk.org/Information/Workandcaring/Carersrightsatwork

    You said "The nurse isn't happy with the way she's progressing.". If you do get a chance to speak with her, it might be worth asking her about the possibility of FTD, as the pattern of change can be quite different from Alzheimer's.

    Take care,

  5. mandyp

    mandyp Registered User

    Oct 20, 2004

    Thanks for all your replies.

    I thought that a phone call was a good idea, so I asked Dad for her number......he wont give me it!!!

    He's said that there's nothing she has to say that she can't say to him and he'll pass onto me.

    I know that she frequently lets him down and cancels visits (after she's due to arrive) and that Dad doesn't really feel she does much other than drink tea and talk, however I imagine she's there to monitor Mum and give advice and point him in the direction of help (should he ever decide to take it!)

    I'm now at a complete loss, I don't even know her name to try to contact her myself. Dad said (and I quote), you have you're own family. Him and Mum are my family....honestly he's so stubborn.

    Who knows what the nurse thinks (mind you I'm not really that bothered about that).

    Dad reckons she just wants to see what kind of support he has in terms of family and since I'm it (only child), she wants to see me.

    He said I've only added to the stress that he's already under so I've to leave it until he feels it's necessary for me to see her, he was actually quite annoyed when I asked for her phone number, I can't get anything right and frequently agitate him these days. I know why, it's just the pressure of taking care of Mum so if he takes a bit of frustration out on me then that's okay I can live with that.

    Sandy, I take your suggestion that Mum may have something else, but on reading the symtoms the only one that seems applicable to Mum is the lack of communication. Since I'm not allowed to ask for the nurses phone number I daren't suggest that the diagnosis could be incorrect.

    So, I guess for the moment the nurse will have to wait for the joy of meeting/speaking to me:)

    Thanks again to all of you

  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hio Mandy

    You could possibly find the nuirse's number in other ways. If your mum is on the files of the local branch of Alzheimer Scotland, they would have it on her files, or they would be able to find out for you.

    You could also ask social services, or your mum's consultant. It would probably ease your mind if you were able to talk to someone who is involved in the care of your mum.

  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Mandy,

    Is it possible your dad is trying to prevent any form of intervention because `if he doesn`t look, it might go away`.

    He sounds at the end of his tether and any suggestions are putting even more pressure on him.

    Does he need help as much as your mother does.

    I apologize if I`ve got his completely wrong, but that`s how it looks to me.

    Take care
  8. mandyp

    mandyp Registered User

    Oct 20, 2004
    Hi Sylvia

    Yes, you're right there could be an element of sticking his head in the sand.

    I've tried to help but he won't have it and gets angry with me, I don't want to add to the stress he's already under.

    He hasn't been offered much in the way of help and doesn't want it anyway (I've suggested he ask). He said no as he'd have to tidy for whoever it was coming round!!!

    I'll just have to do the best I can with him until such times as he'll let me help him more.

  9. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    sounds like someone who loves housework almost as much as I do! :eek:

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