1. bjthink

    bjthink Guest

    For the last 18 months my mother has been assessed by the Cognitive Function Clinic every 3 months.
    For the last few weeks or so she's improved greatly, thanks to certain interventions I've tried, like Reality Orientation, and lots of Reminiscence Therapy. I have all the memory in our family - I think I've stolen everyone else's share, too! My mother loves me to prompt her about the past, and I find it's the best distraction from her psychosis, so I've done a lot of work in this area, even delving among her hidden possessions to find old photo albums and old cards and letters. I know all the old songs, and encourage her to sing them with me, and I can recite and encourage her to remember the old poems she's fond of, and I've done her some large text print outs of favourite poems on my computer, to energise her long-term memory, although her short-term memory has gone. I've got her a diary book, and have put up a notice next to the front door asking everyone who sees her to sign her book for her. She loves this book. I'm a psychologist, so I more or less know what I'm doing, even though I take reality checks from those who have been carers longer than I have, because I think experience counts.
    Last week, the nurse from the Cognitive Function Clinic came to test her, together with the CPN. Neither of them thought fit to sign her book. I suppose they thought they were sort of above it. Hmmmmm..........
    On Friday I spoke to the CPN who told me that my mother's assessment went very well on cognitive function (as it would - she was a Primary School Deputy Head, and can do any amount of spelling, paper-folding, counting backwards etc, and now that she has a memory book, she knows what month and year it is, and as I've been battling on with the reality orientation, she sometimes even knows which day). Her intelligence isn't affected by the dementia or her underlying psychosis, nor is her ability to have an opinion on anything at all, and her new social package which gives her a one and a half hour call every morning means that her carer has time to bring her up to speed about the day's news, which she's incapable of reading.
    Soooo, despite the fact that on Boxing Day she was found by her carer covered in vomit and excrement, and had no recollection of being ill in the night, and despite the emergency ambulance and hospital admission three weeks ago as she'd passed out with a suspected TIA, her next appointment with the psychiatrist/cognitive function clinic, posted to me yesterday, is IN A YEAR'S TIME!!!!
    So this means she can fold paper, knows who the Prime Minister is, and knows where she is (yeah, at home, as she won't/can't leave it, she's now agoraphobic) She knows how old she is (hardly surprising as we made such a fuss of her birthday celebrations this month) and tells the nurse she can do crosswords. Like, not for 10 years, and even then she was rubbish! And she will know all this in a year's time, when I won't be around to monitor and tidy up the mess everyone has made of her case?
    I am furious.
    On Tuesday I attend a cognitive function assessment of her with her psychiatrist, and the 'lovely' nurse, and the equally dysfunctional CPN, and her new Social Worker, if one has been appointed. And I shall remind them I'm pulling out in September as I said I would, and they're on their own from then on.
    I'm sick and tired of having my professional abilities used and abused by this system. Because I am qualified to fill in for their inadequacies, they have decided they can pull back, and leave her very fragile and unstable condition to me, to deal with. No way.
    As Jude has so rightly said, cognitive function in those programmed to display cognitive function (ex teachers), can differ from day to day, depending on whether they feel like showing off, or whether they're a bit anxious, or distracted, or feel it's a bind.
    My mother felt like showing off, that day, shored up by extracting from my psyche every neutron of her normal negativity. The gal done good. And I'm left with the shell of what I really am, always.
    Let them leave it a year, while she pulls her wheelie bin into the kitchen, as she did two weeks ago, to clean it, and turns the house into a skating rink. Let them leave it a year, while she burns another pan out on the stove, forgetting that she can boil water for tea in her electric kettle. Let them leave it a year while she tries to wash her wetted fetid nightdress by hand, and while she doesn't know how to use toilet paper. Let them leave it for a year while she searches the neighbourhood for another man to whom she can give away more tens of thousands of my father's legacy. Let them leave it a year while she truly believes she shops, selects, and pays for for her food every week (I buy it and it's delivered to her). Let them leave it a year while she thows away every electrical item in her home because they 'don't work' . Let them leave it for a year while they can't work out how to give her the medication she needs unless I collect prescriptions from disparate places and dispense pills into the correct boxes. Let them leave it a year while she tells the few friends she has left to leave her alone and go away. After all, she passed her cognitive function test, so everything must be hunky dory for the next twelve months.
    Gawd. What IS the NHS coming to??? It's stolen my life so that it can chuck my psychotic mother, who never had the help she needed, on to the pending list.
    This has got to stop. I'm exhausted by being exploited by a system that's failing the desperate and the sick and needy.
  2. storm

    storm Registered User

    Aug 10, 2004
    Hi BJ, i understand your frustration some times you just feel like throwing in the towel and saying now you get on with it. Would it be an idea to print off your post and take it with you on tuesday show it as you wrote it in the raw!it just might make them sit up and take notice the depth of your feelings and frustration came over loud and clear to me it just might with them.storm
  3. bjthink

    bjthink Guest

    Thanks, love! That's exactly how I feel at the moment, especially as I'm battling a particularly nasty cold virus which is laying me very low. I'm just so <GRRRR> frustrated!
    I shall be my usual very cool professional self, though, at the meeting tomorrow. Icy seems to work very well with that lot, and gets things done. The problem with being a woman is that when you get angry, they just see it as a display of female hysterics and don't take it seriously. A bloke getting angry is an entirely different matter. :(
  4. storm

    storm Registered User

    Aug 10, 2004
    Hi BJ, dont get angry get even,show them what we women are made of cool calm and collected then go in for the kill!Try honey lemon whisky in warm water not for the meeting for your cold.chin up storm
  5. Jude

    Jude Registered User

    Dear BJ -

    Many carers feel like pulling out of dementia land on a daily basis. It's not often that we can plan to leave months in advance, although I manage to do for short periods. I'm incredibly lucky to have Glyn and Carole to call upon to give me long term respite.

    I do hope you've had similar luck in finding full time carers to enable you to reclaim your life again.

    Best wishes,

  6. bjthink

    bjthink Guest

    Yes, I know it's going to be very hard to get myself back, but I originally told them that I would be here to prosecute the gardener, put new care plans into place, sort out the financial mess, and then start to step back. I estimated it might take a year, and so far I'm on target. I'll be in the background, of course, and I'll never be totally free of this, but I've seen that the more I do, the less the professionals do, and that really HAS to stop.
    Let's see what happens at this morning's meeting.......

  7. bjthink

    bjthink Guest

    I've just got back from the meeting, and there were some positive results although the two people I really needed to see - Social Services and the Care Agency Manager - didn't manage to put in an appearance.
    The hospital has agreed to dispense all my mother's medication sort it into blister packs and have it delivered, which frees me from a lot of the petty but time-consuming things that I've been expected to do. This is a major step forward. Also they have put her on the waiting list for PSS, which is the kind of care she needs (their care workers' job is to encourage and facilitate activity and mental alertness).
    I've told them I'm pulling out in September, and have no idea what I'll be doing and where I'll be living after that, so I've given them lots of time to work out how they're going to co-ordinate her package of care themselves.
    I've also been invited to attend a 3-day carers' course at the beginning of next month, so that may help (has anyone else been to one?).
    AND I've just found out that her Local Authority supplies Complementary Therapies (so why has it taken them 7 months to tell me about this???)
    All good stuff.
    Now for the Social Work team and that useless Care Agency! Let's see if I can get my mother a new and permanent SW who's as good as the temporary one, who left at the end of January. Currently, yet again, she's without a Social Worker. And let's see if we can get her new SW, whoever it is, to arrange a care package with a new agency who can promise some sort of continuity and reliability.
    As suspected, my mother performed wonderfully on her cognitive function tests, again, only failing on the immediate memory questions - what a surprise, NOT!
    Oh and by the way, the CPN, the Clinic Nurse, and the Occupational Health specialist, the ones who advise me about putting up useful notices everywhere to help my mother's memory ALL failed to see the HUGE notice I put up on the front door asking visitors to sign her Memory Diary before they leave. DOH:(
    I feel quite chuffed about today.
  8. storm

    storm Registered User

    Aug 10, 2004
    Dear BJ, Well done! glad things went ok, if they dont get their act together it wont be by any failure on your part they have been given plenty of warning.Your mum is lucky to have you on her side,you are right to feel chuffed.storm
  9. bjthink

    bjthink Guest

    Thanks, storm! Was battling with the heavy cold, again, then had to wait ages in the freezing sleet for a bus, since none of them was courteous enough to offer me a lift. It amazing how often you can say, 'I don't drive as I have epilepsy,' and it falls on deaf ears for those who don't want to listen and can't take the hint that for me to get to a morning meeting ten miles away in the middle of nowhere, and then get back again, is a slight problem. I wonder if any of those lovely cosy car-owners will catch my cold???? :)
  10. storm

    storm Registered User

    Aug 10, 2004
    hi bj,you expect to much of them, to offer you a lift would take common sense something which i am afraid is sadly lacking in most pen pushers who seem to play god with peoples lives.I can feel a bad day coming on!storm
  11. bjthink

    bjthink Guest

    I've had a truly horrific day today, but nothing to do with dementia and everything to do with my mother's utter hatred of me and her lifelong psychosis.
    I know none of you can help with this, as this is a forum for dementia, and my mother's problem which affects me so deeply is NOT dementia, but psychosis.
    Today, while she was ranting at me, Social Services telephoned and could hear what she was screaming at me, 'You swine, you've always been bad blood, everyone hates you like I do, I've hated you from the moment you were born. You're an evil bitch....'etc etc, and SS said that maybe my mother should go into respite as her dementia was so far advanced. It isn't. It's just her.
    I said there was no way she would agree to respite, and that what they'd just heard was what I'd had to put up from when I was born. Psychiatrists and Social Services just see the way she treats me as typically dementia, and I can't get them to listen to me.
    Sometimes I feel so irrelevant on this forum, and so alone.
    Will post tomorrow, when I feel better.
  12. Chris

    Chris Registered User

    May 20, 2003
    Dear BJ

    Just to empathise a little - but from a different place (suspect the feelings were simialr to you now) - my Mum was very quiet person even in her dementia years but she had a couple of months when she yelled & refused to move a muscle . Both me and the care home staff said there must be something terribly wrong - a fracture or something but nothing showed on the x rays (not all pelvic fractures do) . But all the medics & doctors at the hospital & GP said was "Its the dementia getting worse" - It was obvious it wasnt - then she got much worse & another x ray revealed the need for a hip op - she recoverd fine & was back to how she was before this whole episode started. Maybe they couldnt have done anythng sooner but recognising there could be something wrong other than the dementia would have helped.

    When Mum was screamin out in agony & those that knew her were convinced she was in pain & all theyd do was shrug their shoulders & say It s the dementia & walk away - Oh!! the Frustration - you feel as if youre banging youre head on a brick wall. and you feel as if they dont care - if they did they'd listen.

    Are the Social Services staff you are in contact with part of a Community Mental Health Team for Older People ? If so I would have expected a better level of service .

    Hope you find better support soon.
  13. bjthink

    bjthink Guest

    Chris, that's the nub of the problem. My mother's file has been left with the Social Services for Older People team, where she is currently without a Social Worker, even though her dementia was diagnosed in 2003. Even after the financial abuse by her gardener, which happened 9 months ago, the EMI team (yes, it's still called that up here) is quibbling and faffing about taking on her file. Her 'risk' is assessed by SS as Critical on one count, and Substantial on the other two. My risk as her carer is classed as Substantial, bordering on Critical.
    She has a CPN who has never heard or witnessed her psychotic episodes because he's a bloke and she likes men, although now that they finally know about her GP records, the consultant and CPN agree that she has a lifelong record of psychotic behaviour and this has been written up in her notes. Two Social Workers (and two on the phone) have witnessed her abuse of me. One of them shouted at me during a desperate phone call I had to make to SS, 'Get out of there, now! You're not safe!' My mother was fighting to wrench the phone out of my hands.
    It defies belief that even at this very late stage in her life she, and we as her family, can't get the dedicated and experienced help that we've always deserved.

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