2nd stage of the rocky road to hell?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lucille, Jun 26, 2007.

  1. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello all

    Had a conversation with mum's CPN today that knocked me for six, although she only articulated what I realised yesterday when I had a message to say mum's tabs were being reduced.

    Anyway, CPN and consultant visited mum last week (she had no recollection of visit). CPN shocked at mum's weight loss and consultant feels that there has been a sudden deterioration in her AD; more damage to the frontal lobe. I'm gutted. Of course, I realised that there's no good way out of all this, but to be told is something else, isn't it? It's that stomach dropping feeling I hate. As a result of the deterioration, they are reducing her tablets and, I guess, ultimately she'll come off them. For anyone interested, she's been on Exelon for about 14 months. They're also keen (but mum isn't) to get her into day care at least one day a week so that she has some interaction with others and to make sure she's eating properly ... but like some of you know, when day care is mentioned it's a big no! no!

    One positive thing: if you can call it that :rolleyes: is that on the consultant's advice I've been told to register the EPA. As some of you are aware, I've prevaricated with this (as have a lot of us!:)) and I did come to a half way house agreement with mum and the bank to enable her some independence. However, it seems now that things are moving swiftly downhill. I'm glad that I've had, what I can only term as an 'official' nod, if you know what I mean to register the EPA. From a purely selfish point of view it avoided me making the final decision. It's not going to be easy to try and discuss the ramifications with mum or to manage the fall out! :rolleyes: I know that up to a point mum won't understand, but I will and it hurts. However, needs must when the devil drives, and he's certainly in charge at the moment.

    Just wanted to get this off my chest. Know a lot of you have been here and that others are also in the same boat. (And there's me worrying about whether I should do it before the LPA deadline of October!)

    Thanks for listening. Am off chocolate at the mo, but sod it, think I'll go and get a family size bar of fruit and nut. :)
     
  2. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Lucille

    Sorry to hear about your Mum's deterioration, it is a shock, I know I was shattered when Mum came off the galantamine and entered the last stages.

    As for registering the EPA, personally I would do it now, we waited too long.......bad advice from the solicitor........ and that has caused all sorts of problems.

    Do you have to tell your Mum it is being registered and why?

    Maybe you could "blame" the bank or post office saying they have changed the system........sorry banks and post office workers, but sometimes that can divert the flack away from you.

    Take care

    Kathleen
     
  3. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hi Kathleen

    Thank you for your reply. I won't delay registering the EPA (subject to the postal strike of course!). I have had to resort to a fair amount of blagging with mum as telling her straight means I get a tongue lashing (she flies off the handle at the prospect of losing financial control - who wouldn't?). You're right about discussing it with her, I will give it some thought, but in any case, it will be done within the week.

    Best wishes:)
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Lucille

    It's a shock to the system when someone confirms the deterioration, isn't it. I'm afraid my usual reaction is 'but he's not that bad', even though it's really a confirmation of what I've been thinking for a while. It's also a worry that your mum's medication is being redued.

    On the positive side, you have a very good CPN and consultant, who are obviously on the ball and prepared to advises you. Much better that than sticking rigidly to the MMSE core.


    It's going to be difficult for you to tell your mum about the EPA, and daycare will be another problem, but if you can get over that hurdle, life should be a bit easier for you and your mum.

    I'm not surprised you're knocked for six, I definitely think the fruit and nut is justified.

    Love,
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Strictly speaking you do have to tell the donor that it's being registered, unless to do so will cause undue distress.

    "Please note that in certain circumstances we may consider dispensing with the requirement to notify the donor, but only if a doctor will certify that it will cause the donor harm or distress." (Guardianship web site)
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,552
    Kent
    So sorry Lucille.

    I understand the shock of being told your worst suspicions are justified, but at least the `official nod` shows your feelings are right.

    Now you know, you are not left floundering, wondering what is happening, how long it will go on like this and when to do the right thing.

    I can only suggest you try to tell your mother what will cause the least upset, just as Kathleen said. Let it be anyone`s fault but yours.

    Love xx
     
  7. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Lucille, so sorry.

    Perhaps one positive thing coming out of the consultant and CPN being keen to have your mum access some day-care it means you have 'allies'.....and the onus may no longer feel like it is all on you to persuade mum it would be good for her???? I realise how long and hard you've tried for that for mum ......

    On the registering EPA front ..... I looked at the 'GP route' to avoid having to tell mum because I felt it would distress her .... but then realised how much more distressed she might have been given she had the potential to 'find out' from someone other than me ...... like trying to present a card/passbook etc in a bank/shop to be told by a stranger that her account was 'stopped' ...... I can't imagine what distress that would have caused.... I think maybe the 'swerve' via GP letter might be a sound choice for people who are not only concerned about the distress but can be confident that the donor has no access to or would be unable to present cards/passbooks etc

    Otherwise, in order to prevent a disastrous situation arising which would beyond their comprehension / terribly damaging in all manner of ways ..... the onus would be on you to make sure you removed your mum's cards etc .... in which case you're still having to explain something to her ..... and if you're the one doing the 'physical' taking away of having that independence .... a lot more difficult I suspect than explaining you are acting on the advice of others (without apportioning 'blame' you could suggest the 'bank have advised' - as the consultant has - would he/she agree to confirming you are acting on professional advice? That kind of thing generally goes down well with my mother when I can't persuade her what is obviously in her best interests........)

    Certainly at my mother's stage, the impact of her finding out / realising I had done something without telling her on one of her more lucid days ... well I can't begin to imagine the backlash and the impact on trust between us ..... That I 'served her with notice' (in the nicest way I could) and she subsequently 'forgot' was one thing .... to have not told her in the first place ......?????? I guess that's down to not only the 'stage' of their understanding and anticipated periods of lucidity, but our unique relationships with and knowledge of the 'donors'

    In the months since registration it HAS got easier ..... Mum has veered from 'terribly upset' that she feels she has lost her financial independence to 'terribly grateful' I'm taking all financial responsibilities for her (not a scrap of paper for her to worry about anymore) - that's the one I STILL keep working on when she has the occasional 'digs' at me when she has managed to get to out and about 'but I can't buy anything anymore because I've got no money' ...... (Actually she's got plenty and has now been forced into carrying round far more cash than is good for anyone .... but that's a whole different issue).....

    Sorry, waffled away .... hope you can pick something out of that that helps ....

    Love, Karen, x
     
  8. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    #8 Lucille, Jun 26, 2007
    Last edited: Jun 26, 2007
    Hi Karen

    Thanks for your note. You are right about the notification side of things (as is Jenniferpa), I could have approached her doctor, but that in itself creates not only the problems you mentioned ... that mum would at some point be faced with the 'no you can't have any money routine', but also the fact that I feel that the GP would prefer to distance himself from the 'nitty gritty' of mum's dementia. Not that he's not interested, but he's said he doesn't have an indepth knowledge of it and is trying to deal with all her other ailments. Besides which, I just don't think I can face another phone call at the moment to her surgery! Logistically, it is probably easier for me to speak to mum. As you say, there are lucid moments, though not as many as I'd like these days.

    I can remember when I first posted on here about the money side of things and everyone (you included) came up with such helpful advice. It seems ago ago now, that I was worrying about moving her pension from the post office to the bank and the uproar that would cause. Then it was taking her debit card off her so she could only go into the bank. Slowly, slowly, she's come round to these things, although I absolutely know that taking the cash card away all together will be the most difficult. More so because of the miles between us. I mentioned the situation to my brother but he said he didn't want anything to do with it. Not the answer I was hoping for, but I think he meant that he couldn't deal with it all ... and I can??!!:eek: :eek:

    Ironically, I think when I do sit down with mum she'll be as worried about her siblings finding out about her condition as much as losing her financial independence (they already know, but I will have to tell them as part of the notification process). She is a very private person and it will upset her; but it will be more upsetting if I get a phone call one day saying she's had a bank account cleared out by some git, so that's the way I now have to look at it. Also, as she deteriorates, there are the 'practical' issues to look after such as leccy, gas and so on. Some have been OK so far, others a nightmare. I know you've had your probs with the utilities, so I await all this with glee (not!!).

    Thanks, Karen, for your support and also to Hazel and Grannie G. As ever, words from the wise.

    Cheers!
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.