Advice now mum is diagnosed

Discussion in 'ARCHIVE FORUM: Support discussions' started by Margaret W, Jul 10, 2007.

  1. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Hi all

    Mum was diagnosed with Alzheimers two weeks ago. She is in a secure psychiatric unit cos she was found wandering at night. The nurses tell me there is no improvement, she still gets up in the middle of the night expecting breafast (or dinner or tea) at 3 a.m. I hope to see the consultant psychiatrist tomorrow but it is pot luck whether I will or not. Is this common? i.e. not being informed what is going on? I have no idea how long mum will be in this unit - 2 more weeks, 2 more months? I am dreading them saying she can go home cos as far a I can see there has been no change in her perception of time.

    Is she ever likely to be allowed home again? And if so, how do we stop her going out at night? Should I start looking for permanent care homes? Advice please?

    Should I register the Power of Attorney that I have? The bank didn't need it to add my name to all of her accounts, and I tried explaining it to mum but it went over her head cos on Sunday she said "You'd better go to the bank and draw out £120, I need it". "What for mum?". Well in case I need to pay any bills. No mum, I don't want to pay bills in cash, it isn't convenient for me, I will sort out direct debits. What are they? We've been through this before, years ago. I'll get the bank to take out a fixed amount each month to pay for your bills so you don't need to bother. Pause. But I need the cash to pay them, get me £120 next week and bring it here, I want it. I want to know what you are doing with my bills. My electric bill is due, I need to give you the money to pay it. My gas bill will be due soon as well, you wll need some money to pay that. No mum, I don't have the time to keep running to the post office to pay these bills, I am fixing them up as direct debits. No, she doesn't like it at all. Any advice folks?

  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Margaret

    sorry about the situation!

    I suspect that the unit itself has no idea how long your mum will be there - in my experience they generally took 2 weeks each time with Jan, but in reality I suspect the duration simply is dependent on how quickly they can find a medication regime that works.

    In your place, I'd be asking for an update on what is going on.
    Medication can make a big difference to that likelihood, if only in the short term.
    That will be the key issue. If the medication regime doesn't work in that respect then life will become very challenging. It is something you should bring into conversations with the consultant.
    That is such a hard thing to consider, but it might be good to do a little groundwork, if only to see what is around, and what the cost implications are. It was a huge shock for me, for sure - both the prospect, and the potential cost.
    From the Public Guardianship web pages on EPAs:
    You need to ask yourself whether you have yet reached that stage with mum....

    Take things slowly, and as Norman has always advised: Day by Day.

    Take care
  3. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    Hi Margaret

    I've had this problem with Mum fretting over her money for several months now. Luckily, with her living with me, I was already paying all of the bills anyway and most of the time Mum didn't fixate on this. She would worry about not having any money in her purse instead. That was because I would give her the cash from her pension one day and within hours she would have put it somewhere for safe keeping and forgotten where. I lost count of the number of times I searched the house from top to bottom because the hiding place was usually different each time. I bought a small cash tin and started putting her money in it with her - what could be safer than a locking tin! Mum took to this quite well and things improved.

    I seems to me that even if you did get the money that your Mum wants she is going to give it straight back to you so you can pay the bills. Why not set up the Direct Debits anyway and have some cash in the house so that you can give it to her when she asks, offer to go and pay the bills for her and she should give the money straight back to you. If she physically goes through the motions of handling the money it may stop her fretting.

    Just an idea.

  4. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    re EPA, my brother and I exercised the one for our parents the moment my mother started forgetting that she had issued a cheque and did it twice and my father didn't understand when we tried to explain the simplest of transactions (and he used to be an accountant). We were worried that we had been a bit "quick of the mark" but we are now very glad we did it when we did. It takes time to get it registered with the Court of Protection and also time to register it with any financial institutions accounts are held at (in our case it was rather a lot!), so my recommendation would be to do it as soon as possible.

    Hope this helps.
  5. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Margaret

    I'm sorry you're so worried, there are so many things to think of, aren't there?

    If I were you, I would ask for an appointment to see the consultant, if you haven't managed to catch him on the ward. It's your right to do this. And I would certainly ask about the possibilities of your mum coming home, and what sort of care package you can expect.

    Regarding bills, I wouldn't go into any detailed explanations, I'd just tell your mum that the bank is taking care of everything while she is in hospital. Long explanations can just increase the confusion, and she will keep asking, hoping to be able to understand. Just keep repeating firmly that the bank's dealing with it.

    It sounds as if it may be time to register the EPA, but only you can decide that. You don't have to explain that to your mum, she just had to understand what she was doing when she signed it. If you have to send copies away, some financial institutions demand a certified copy, i.e. each page has to be signed by yoir solicitor. Some will accept a copy without certification, but it's worth bearing in mind.

    I hope you manage to get some more information today.

  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Maragaret: how do you think she'll respond if you tell her that you're going to register the EPA? You don't have to rub her nose in it (ala "you're losing your marbles so I have to take control of your finances") but she IS supposed to be informed, unless you get a letter from a doctor confirming that to do so would cause undue distress. I don't know how to deal with the fixation on money though: my mother has gone to the opposite extreme and thinks that money comes from heaven I think. She definitely has no understanding that she is paying for all her care (quote "Isn't it wonderful that we get given all this") which is another sort of stress since I then have to bite my lip, but it in no way compares with what you're going through. Even if you mother was quite well, of course, in a hospital setting the last thing you want to give her is wads of cash, since it's hardly the most secure environment.

    As to receiving information: as Bruce says I don't think "they" know much more than you do about when she'll be discharged. I would suggest calling the consultant's secretary for an appointment. I have found that that shakes loose information when nothing else does.

    I think it probably IS a good idea to start looking in a general way at possible homes, if for no other reason that to discover which ones would be totally unsuitable.

  7. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello Margaret

    I'm pleased that you have finally received a diagnosis. It seems to have been a long haul!

    Regards the EPA, based on the fact that your mum is wandering and is in a secure unit (and based on the quote from the PGO website that Bruce kindly posted), I'd register it asap.

    I sent my mum's off last week. I felt a complete Judas, I can tell you and almost burst into tears in the Post Office!

    My mum can't remember whether she's been to the bank or how much she's drawn, but still insists she's 'in complete control of her finances'. If I had not paid her rent the other week, it would not have been met.

    Take a deep breath and, as they say, just do it! :)

    By the way, I downloaded all the forms from the website and applied for a fee waiver as my mum's assets are below the £12,750 threshold.

    Let us know how you get on.
  8. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    As regards the cash, it might be worth just keeping some money in the house. Become familiar with all the places that she is likely to put it (these can be completely bizarre).

    If Mum wants to give you money to pay the bills, take the cash, and then use it the next time she wants you to "get money out to pay her bills". Let her keep a small amount for when those "bills" arrive (of course they never will but chances are Mum won't recognise this or remember whether they have or not). At the moment she's just anxious that a bill will arrive that she can't pay - you need to allay that anxiety.

    There's no point in trying to explain about direct debits and other things. Mum will either not understand, or even if she does, she will just forget about it and start demanding cash and worrying again. There is every possibility that it's an old memory, but Mum will be quite convinced that she has always paid her bills that way and that there's no other way to do it.

    Most of us have learnt the hard way that there is no point in trying to use reason and rational arguments, people with dementia are not open to reason, they will just settle on "their way" and that will be that.

    It's not worth all the stress and arguments, just work out a way that appears to work the way Mum thinks they should, even if you know it's completely pointless!

    My Dad was absolutely convinced that he would have to pay for something we'd ordered by mail on delivery, in cash. No amount of explaining that it was already paid for by cheque with the order would change his mind. Or even if it did, next minute he'd forget and be back on the "I will need some cash". He would get panicky if we were out because "that thing will come and I haven't got any money to pay"

    So we just kept £30 in the house, every time he starts on about "where is my money" and "where is the money I just got" or "I will need money to pay for that thing we have ordered" we just show him the £30 and he is satisfied.

    It sounds awful to be deceitful to a loved one but you will be driven mad if you don't.

    How well does Mum recognise money? If she doesn't you could use Monopoly notes or something like that.
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    That is what my mother use to do , wake me up at 2 or 3-am asking for breakfast, if I did not stay awake she would open front door wanting to go for a walk but when she was put on a medication call Exbiza that stop it all , for the past 5 years

    but now they have stop giving that mediation on the NHS in England
  10. j.j

    j.j Registered User

    Jan 8, 2007
    hi margaret
    my mam is in a secure assesment unit ot the moment it is the second time in five months. the first time we were told 4 to 6 weeks was the average to watch assess and give appropriate medication if required. we were told they record mams habits moods and capabilities and at the end of the assesment the results are put into a computer and the computer would analyse what sort of care mam would require and if that could be met at home or in a home, obviously there must be discussion with profesionals, we did feel at times that we had limited information and not much was bieng done but we have a good social worker who always did his best for us. Also with money i was able to say "oh yes i,ll bring it up on my next visit" my mam would forget I,d said this and i was able to get away with that for a long time, not good with everone i know, x
  11. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    I think that's awful!:(

    I'm a great computer fan, but when it comes to determining personal care.............:( :( :(
  12. ishard

    ishard Registered User

    Jul 10, 2007
    Im crying as Im reading this website

    We are just at the start of trying to get my mother diagnosed and Im finding it very, very hard to take the verbal agression. I have been looking after her for four years now on my own. There were symptoms of her being ill before my Dad died and I took over her care.

    The care team that the GP has activated has not told me anything about what they are doing and Mum gets agressive when I ask.

    What made it worse is that when the appointment came for her CT scan it was sent from the Mental Health Team and Mum goes mad at me saying I think she mad. I have tried to reasure her that shes ill and hopefully some meds will help.
    Up untill then I have gently referred to any help she needs as coming from a 'Memory Clinic'.

    I have so much bottled up inside that to actually sit here and write it out I find I cant :(

    I gave up nursing to look after my Mum and you woud think that nursing experience would help but it doesnt when its family.
  13. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Ishard

    It is isn't it? Welcome to TP. We can't take away your problems, but we can make them easier to bear.

    I think it is important for you to get some information, and have someone to talk to. Four years is a long time for you to have cared for your mum without assistance. And yes, I appreciate that looking after your mum is not the same as nursing strangers. Apart from the emotions involved, you never go off shift!

    I hope you get your diagnosis soon, and are able to get a support package set up. Let us know how you get on.
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    Silly question I know , but have you told your doctor or the receptionist that your mother full time carer ?

    Welcome to TP
  15. ishard

    ishard Registered User

    Jul 10, 2007
    thank you

    :) Thank you for your replies Hazel and Margarita and Im sorry that my previous post was so emotional, it was sooo good to finally find people who understood what it is like to care that it just became a bit overwhelming.

    Yes the GP does know Im the full time carer as he knew me when I worked on the wards and I phoned him to activate the diagnosis. I had before then given my Mum the benefit of the doubt that maybe her ‘problem’ was depression which I spoke to the GP about when actually at work on a ward.

    I think I may ask for some back up to help me help my Mum as I now realise that I cant do it all on my own.
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi ishard,

    Your user name says it all. Welcome to TP, I wish you`d found it sooner.

    When I took my husband to his first visit to the psychiatric consultant, my heart was in my mouth, as it was at a Day Centre for the Elderly Mentally Infirm. There is a big board outside, saying Mental Health Centre.

    I managed to distract him as we neared it.

    Does your mother have the same attitude to mental health issues as my husband has? He is embarrassed, ashamed and thinks he will eventually exhibit psychotic behaviour.

    I hope you find some `back up` here, as well as from the services. Whatever your emotions, whatever your experiences of challenging behaviour, denial, accusations, we will all know what you mean and try our best to support you.

    Keep posting and let us know how things move forwards.
  17. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Ishardm, you tell your mum that her brain is wearing out just like other parts of the body wear out. Mu mum seems to have accepted that.

    Everyone else thanks for your replies, but I think mum has accepted the money siuation for the time being.


  18. Lotti

    Lotti Registered User

    Jul 31, 2007
    Hi Margaret,

    I was going to suggest the same as Lizzie has done, take some money with you and perhaps an old bill so she can see something 'paper' even if she couldn't read it, and let her give the money back to you to 'pay' the bill for her. Anything is worth a try.

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