What has to happen!!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Roma, May 20, 2008.

  1. Roma

    Roma Registered User

    Jan 15, 2008
    122
    UK
    I just don't understand the system at all. My mother is getting worse by the week. She is on Aricept at the moment but as she's been on it since 2004 it now looks as though it has stopped working.

    The reason for my thread is that her carers have reported that she is gradually getting more and more confused when they go in, and they reported that a couple of times they have found her wandering the street in her nightdress and no slippers. She also doesn't lock her door at night now and sometimes goes to bed with her electric fire on. She says she's seen people in her bedroom who've then run off. I assume she's been hallucinating but how do I know that someone hasn't actually been in!!

    I've tried to keep her at her own home for as long as possible with all the support I can give because she's adament she doesn't want to go into full time care, but surely it's only a matter of time before something dreadful happens.

    But of course the system is that if she doesn't want to go into care then she can't be forced to go in unless she's sectioned under the Mental Health Act - something to do with Human Rights. Well what kind of system is it that lets the elderly humiliate themselves by going out the house half naked. It's beyond belief. The law seems to protect children more than the elderly. Would they allow small children to wander the streets in this way. I think not!

    Her consultant is going to come and see her in two weeks time so it is down to him whether she is placed in a safe environment or not.

    I'm also going to get her GP to write to him with his concerns.

    I know that putting her into a home isn't going to be an easy ride from what I've read on TP, especially as she'll be resistent, but surely she can't be any worse than she is now?

    Roma
     
  2. scoot

    scoot Registered User

    May 9, 2008
    3
    West Midlands
    Hi Roma

    I do sympathise with you. We have got BOTH parents with Alzheimers and Vascular Dementia, and I can relate to your frustrations. We are experiencing exactly the same problems as you are, but with both Mom and Dad. Today we have had numerous phone calls to say that they were both missing from their flat (they live in sheltered housing). They were then found wandering and brought back, only to find some moments later that they were missing again. Today Mom has gone missing 6 times and it is only 2.30 pm.

    I agree it is a terrible state of affairs, which like you were are trying to sort out, but the system is so inflexible and takes so long. Neither of them will like the idea of going into a home with care for them 24/7, and we know they will resist, but we are helpless do know what else to do?

    Not sure where we stand on the "sectioned" scenario, which we don't want for them. If we could just get them into a residential home with care 24/7 then I am sure they would be fine eventually, once they got used to the idea and were in a set routine, with regular meals and help generally etc.

    Hope everything works out for you.

    Regards
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Roma

    I'm with you all the way on this. How can they say that someone is not competent to sign documents, but is competent to say whether or not they need care and supervision? It makes absolutely no sense.

    I've no help to offer you or Scoot. Saying that the Human Rights Act shouldn't apply for people with dementia would open the doors to all sorts of abuse. But there has to be an answer, too many people are in danger because no-one appears to apply common sense.

    Huge sympathy to you both, but no answers, I'm afraid.:(
     
  4. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    Whilst I agree with some of what you say, I would point out that children are a different case. Children are automatically assumed not to be competent in such things: that responsibility lies with their parents. But once someone becomes an adult, they are assumed to be competent and are accorded the rights that goes with that competency. These rights can only be removed under some very specific circumstances. This can only be correct. It is better than making detaining someone against their will too easy.

    Someone found wandering the street in their nightdress would be taken into temporary care and, subject to medical assessment, possibly detained. However, the ultimate step is to section someone, and the circumstances have to be pretty extreme - in essence, someone must be at such risk to themselves, or others, that they must be detained against their expressed wish not to be.
     
  5. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Roma,

    I don't think you have to resort to sectioning. I think the time has come to look for a care home. My mum was the same, popping out at night to the corner shop was bearable because she came back home when she found it was shut, but waiting for a bus half a mile away at 2 a.m. was not bearable to me. And it all came on so fast, I was scared stiff. We then learnt that it was not just a matter of popping out at night, but of phoning friends in the small hours (3 a.m.), arriving at the post office at 5 a.m., eating breakfast at 7 p.m. and generally not knowing what time of day it was at all. Medication probably also went haywire, I do not know. As I said, it all happened so fast.

    She hates the care home, she wants to be back at home, but it isn't possible.

    I hope you manage it successfully.

    Much love

    Margaret
     
  6. Roma

    Roma Registered User

    Jan 15, 2008
    122
    UK
    I wish Margaret that it was just a case of looking for a home and her going in willingly, but whenever we've broached the subject before she gets quite upset and aggressive and storms out of the room and won't discuss it.

    I hate the whole idea of sectioning and I didn't get a wink of sleep last night with the thought of it. I just hope that I can persuade her that she needs looking after full time.

    I suppose the alternative is just leave her and wait until something awful does happen, but then won't that be irresponsible of me to do so?

    I suppose I've just got to wait and see what the consultant says.

    Thanks for all your replies. As everyone says it does help somewhat knowing that we're not alone in this.

    Roma
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    Roma, this is the position I was in with my mother. It sounds as if she was just like yours.

    I arranged a Care Home, and had it on standby. The day the `crisis` came, when my mother was visibly frightened because she did not recognize her own home, was the day she went.

    We arrived at her house, she was standing on the front step shaking and crying. I said she needed someone to look after her and at that moment she agreed. I phoned the home, they asked for 2 hours to get her room ready, we packed her bags and were off. We left too early and drove round in circles, seeming to be on our way. Just in case she changed her mind.

    On the way she expressed gratitude for our help. I said `I just hope you will be happy there` and will never forget her reply.`I don`t expect happiness, I just need to feel safe.`

    The day after, she was clamouring to go home, but she was in an EMI unit and I managed to distract her. It was painful.
     
  8. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    I know it's only a small part of the overall problems, but would it be feasible to make the lock a 'Yale' type, or do you think she might lock herself out?

    Would it be possible to 'engineer' the necessity for a weeks respite care, to 'decorate her room', or 'get the carpets cleaned' or some such excuse. If the care home she goes to is a good one (and they DO exist) she might find she likes being looked after and having company to chat with.

    Another stray thought - has her Aricept dosage ever been increased? My mum's has just been doubled up from 5mg to 10 mg.

    Best wishes
     
  9. Roma

    Roma Registered User

    Jan 15, 2008
    122
    UK
    [QUOTE

    Another stray thought - has her Aricept dosage ever been increased? My mum's has just been doubled up from 5mg to 10 mg.[/QUOTE]

    She's on 10mg already which is the maximum dose.

    With regard to her door I thought about changing her door with a different lock but I've found that anything different just gets her agitated. I changed her lift top bin for a flip top recently and that caused no end of problems until I changed it back.

    I've just spoken to the consultant and he says the best option would be to try and persuade her that she needs full time care, but if she still refuses and I still feel she's at risk he would come out and see her and assess her with the possibility of sectioning. Although he did say that it wouldn't be the first option as it is very distressing for all concerned.

    I just know if I can get through to her and if she's having a good day then I can maybe make her see that she needs looking after full time. I just hope my powers of persuasion are strong enough. But of course she might agree one day and then refuse another.

    Maybe if I put it to her that my worrying about her is making me ill, or do you think that's too much like emotional blackmail:(
     
  10. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    #10 Lynne, May 21, 2008
    Last edited: May 28, 2008
    Well that's the tactic I used to get my Mum to have a week in respite in April so that I could have a short break. Not entirely untrue either!

    When she came home she had forgotten about it (at a conscious level) within a few hours, but it unsettled her subconsciously in that she's been having disturbed sleep, nightmares & walking about the house 'looking for me' at odd times in the wee small hours. Having said that, I have every reason to believe that her care during that week was excellent. She even put on a little weight!

    Best wishes
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #11 Margarita, May 21, 2008
    Last edited: May 21, 2008
    Have you told that to a social worker ? because with that information from the carers it can support you in wanting to get you mother into a care home .

    Try not let it get to that stage , when they is a way around it .


    Social worker can do a mental assessment to determining if your mother has the mental capacity to make her own decision where to live in her best interest. If after the test she Lack the mental capacity to make her own decisions in where to live in her best interest , you can move her into a care home .


    I also used emotional black mail on mother to get her to go to very first respite.

    so really in my perception its not emotional black mail , because its the truth just like you said above , because it will make you ill with worry if you feel your mother not safe in her home , she may of lost the insight of knowing that , but you have not so your end up making yourself ill with worrying about it . I been they done it , No how you feel .


    Anyone with a logic realistic mind can read that your mother at the stage that she needs care home or someone caring for her full time , hope you don't mind me saying that , don't want to sound rude .

    Pick up the phone call a SW or doctor
    consultant to do that test on her, may be the consultant not read up on the new mental health act law so he would not need to section your mother, where she end up in a psychiatric ward .
     
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Oh Roma, it is so hard.

    We were "helped" by the fact that mum was in an NHS assessment unit for 6 weeks, and the consulant would not agree to her leavinh unless we insigate permanent care for mum. So we had to do it.

    Can't offer anhy other solution, sorry, but just do your best.

    Love Margaret
     
  13. Roma

    Roma Registered User

    Jan 15, 2008
    122
    UK
    Well I went to see mam on Friday to broach the subject of full time care and the possibility of going into a home. Thankfully she was having a good day, although initially she was reluctant to discuss it, but with some gentle persuasion she started to talk about it. I think the turning point came when I got so upset and started crying. Her maternal instinct seemed to kick in and she was comforting me and telling me not to worry. She said that she knew the time would come when she’d have to go into a home and she knew she was doing things wrong and forgetting things. She wasn’t aware however that she’d been wandering the streets. She seemed quite lucid at this point and I think it made me realise what I’d lost. I think I’ve just been so practical over the past couple of years and pushed the emotional side of things to the back of my mind and I think it just came spilling out on Friday. I’ve been very tearful all weekend. But now I’m back in practical mode to deal with the next set of problems i.e. searching for the right care home and all the problems that go with that. I just hope she doesn’t change her mind when the time comes, although I know that’s a possibility. I saw her yesterday and she wasn’t having such a good day as she thought she was going to live with my brother. She had packed up a few things and had her coat on waiting for him to pick her up. No two days are the same.

    I have a question – myself and my brother have an EPA which is unregistered at the moment. I have a joint bank account and building society account with my mother. The accounts are hers but when my dad died 15 years ago she put my name down on these accounts in case she became ill and needed access to money – never dreaming that she’d get dementia though. Anyway it means I can get her pension, write cheques for her carers any work to her house, buy food and clothes etc without actually having to use the EPA. She has a couple of investments and she owns her own house which aren’t in joint names. Will I have to register the EPA now , or can I wait until I need to sell her house and cash in her investments when her savings run out to pay for her care. Or is it the case that I don’t have to register it at all. Who decides when the time is right to do so? I know from reading the posts on TP that a lot of people have problems once the EPA is registered.

    Any advice on this would be greatly appreciated.

    Roma x
     
  14. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    HI Roma,

    I think you are on your way to a care home for mum, and that she will accept it. Funny she thought she was going to your brother's but hopefully that will change. At least she knew she was going somewhere.

    You are very lucky that your mother recognises tears as a sign of caring and distress, my mother doesn't understand tears at all. She simply doesn't see the point of them. If I cried in front of her she would assume I was crying for myself, not for her. She is a funny woman, I think I need another 20 years to get to know her. This week she told me she wasn't happy and then said "but there is nothing you can do about it, so don't worry". Amazing.

    My mum was wandering the streets too, she had no idea, and still denies it, but we have proof. She was also phoning friends at 3 a.m. (they don't visit her, no longer friends). You have to act at that point.

    I would register the POA now, no point in not doing. Once registered (it takes a few weeks),get some copies ceritified by a solicitor and you can then deal with mum's affairs in full. Financial that is.

    It does make life easier when deal the the authorities. Once ou have have a diagnosis of Alzheimers or Dementia, you can get get mum's council tax disregarded.

    Now, hold fire on selling her house and cashing in investments to pay for her care. I am the wrong person to advise cos I thought I had done it right, and am not now sure that I have. I thought mum would be entitled to a, b and c, and she wasn't. WE sold her house, perhaps we shouldn't have done. Oh, the DWP told me she was (entitled to certain benefita), but they made a mistake, and apparently the DWP can make mistakes and just turn them round and claim an "official error", and hence claw back anything you have already had (though my experience is that they don't) but they can certainly change their minds. So before you go selling mum's house (as prices are falling at the moment, might not be a good time to sell), suss out ALL possibilities. I'll gladly discuss with you, (I am an accountant, but don't get excited about that, cos I am not in practice and obviously not an expert on financing care, but do have half a brain that might help, as well as my own experience).

    The funding situation is a nightmare. Siss it out and come back to me for a second opinion.

    Hope mum is happy to go into a home, mine hates it.

    Love

    Margaret
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    Hello Roma

    My husband has just gone into an assessment ward and at the case conference, the consultant advised me to register his EPA.

    Perhaps you should contact your mother`s consultant and ask if the time is right.

    Be prepared for your mother to change her mind about going into a care home. My mother changed her mind quite a few times, but I had her place booked and when the crisis came it was ready for her.

    Take care xx
     
  16. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    232
    Newcastle upon Tyne
    Hi Margaret,

    "Once you have have a diagnosis of Alzheimers or Dementia, you can get get mum's council tax disregarded."

    Is that right? I thought you had to be in receipt of benefit (pension credit, attendance allowance) to get exemption from Council Tax. Which is why I've been struggling for 6 months to get Mum's pension credit sorted - even if it's only for a few pence.
    Carolyn
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    Hello Carolyn

    Your mother should get her council tax disregarded and should be receiving Attendance Allowance.
    My mother receieved both benefits even though she was living in her own home, because I showed she needed daily and nightly attendance from me, even though she lived alone.
    Please push for it.
    Love xx
     
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Carolyn - you're right that she needs to be in receipt of AA before she can claim the council tax rebate for mental disability. However, she should be getting AA anyway, even at the lower level.
     
  19. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    232
    Newcastle upon Tyne
    Hi Sylvia and Jennifer,
    Thanks - I know I should apply for the AA for Mum - it's just something I've been putting off because I've been clinging to the hope that Mum isn't that bad and might be OK. It's like a final admission that she's not and it's so hard to do. I did it for Dad but not until he was much worse - just before he had to go away. This is so hard.
    Carolyn
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    Oh I know Carolyn, but your mother is entitled to it and it will help to make life more comfortable for her.

    Filling in the forms does hit home, when you see it in black and white but it is a means to an end.

    It is always easier not to admit to it but you are with Talking Point and have experienced it with your father so you know.

    I`m sorry if I`m being too pushy. You do what you are comfortable with.

    Love xx
     

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