1. bjthink

    bjthink Guest

    Some months ago I posted about being called upon to be a carer for my mum with dementia, and said I was going to write a book about it. Fat chance! After four months of leaving my home and moving back to this city so that I could be close to my mother as her primary caregiver, I have myself been diagnosed with acute stress disorder, and there just aren't enough hours in the day to sort out the chaos surrounding her.
    She was diagnosed by the GP as having probable dementia 4 years ago, but wouldn't keep any of the hospital appointments he made for her. Social Services, at my long-distance request, put in help for her three years ago, and it was her Social Worker who finally had my mum diagnosed (with a home visit from a psychiatrist) almost two years ago.
    She has a mixed dementia - AD and vascular - but as I said at the time, she has had a lifelong mental or possibly personality disorder which has made her very difficult to deal with for all the family, all our lives. One doctor wrote in her notes in 1969, 'Arrogant hysteric, totally lacking insight. Almost untreatable'. That just about sums her up.
    It was necessary for someone to step in to solve the problems she had got herself into after losing her gentleman friend to cancer. She gave away £17,000 over the course of four months to her gardener following the bereavement. I am now prosecuting the gardener.
    As the person who knows her best in the world over the 60 years of my life, the job fell to me.
    I came in with the intention of sorting out immediate difficulties, and then going back home. I'm still here and am likely to remain here for months, perhaps years. I'd never realised what a confused state the system is in, and truly have no idea how anyone finds their way through the labyrinth of Social Workers/Care Workers/CPNs/Consultants/GP/NHS in general/ Benefits system. What a mess! And most people have to find their way through it when someone they love dearly is in the grip of a terrifying illness - a dreadful emotional ordeal in itself. I just can't understand how anyone can expect it of us. Where we should be supported, simply and easily by a smooth-running state organisation, it seems that all people want you to do is attend meetings, fill in innumerable hostile forms, answer questionnaires about targets and standards, and then promise you that something will be done when decisions have been reached in some distant office.
    For me, the job is made more difficult by my sense of isolation in a city I left 40 years ago, away from my network of friends and trusted tradespeople, my support systems and my beloved son.
    My mother continues to abuse me, verbally and physically, as she has done all my life, and this, too I find very difficult to deal with as not only am I revisiting my dreadful childhood, but it's happening again. I also feel very isolated in this. I can't say, as so many of you can, to give you a modicum of comfort in a turbulent world, that it isn't her, it's the disease. I actually don't mind the disease, and find myself compassionate towards this aspect of her. I know how much she hates losing the controls and authority in which she's prided herself all these years, and I sense her fear, and that's so sad. It's sad that she can't cook, wash, that she hoards, is housebound, can't handle money or select food, has night terrors, has lost all her short-term memory, and all sense of time. It's sad that she makes up dreadful stories about others. It's sad that she's so lost.
    The other day, for the first time in her life, she said sorry to me. After weeks of repeated abusive face-to-face meetings and phone calls she had a lucid moment in which she telephoned to ask me to understand that in order to survive she has to shout at someone, and I'm now the only person still alive who's worth shouting at. I suppose it makes sense.
    I feel very alone. Most carers are, by the nature of the painful and difficult task we do, the ones who love most. People in my position, who were never loved, usually have no sense of filial responsibility, and would have put her into a home years ago. I can't do that. She deserves to have what she's always known, and to try to live out her life independently, and I'm trying to facilitate that by going on Direct Payments to care workers who may be able to understand and cope with her. But I'm becoming increasingly frustrated by the length of time everything takes, and meanwhile she's deteriorating month by month. On Boxing Day she was found by her morning carer covered in vomit and excrement, having obviously had a stomach bug in the night. So maybe she needs night-time carers, too? It can't be me, as she attacks me.
    Sorry about the despair and anger. I know everyone feels it at times. But it truly is not easy, is it?
    I just thought I should write an update. Thank you for listening.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello again, and thanks for letting us know.

    The path we carers and sufferers are on is never easy, is never 'text book', and is generally different in one, more, or many aspects from what others have experienced.

    You have really reaped a harvest of problems and I have no real idea what to say that might be helpful.

    Perhaps just this.

    Everyone deserves what they have known, for as long as that is a possibility. Circumstance will dictate in all cases when that possibility slips from being a wish, to being impossible. Three years ago my greatest wish would have been to have been able to care for my wife at home, for good. I'd have given anything to have been able to do that. But circumstances changed - everything collapsed at once for her ability to be at home - and after over 3 years of being in the excellent care home where she now lives, I know that it is the best possible place for her.

    Besides the fact that she has 24 hour care, and a custom safe environment, the house where we lived - where I live alone now - would never have been safe for her, or even as comfortable. I can see her as often, and for as long as I want to, at any time, day or night.

    You too deserve a life. Caring does not stop when a partner or relative moves to a care home. Let this disease be a focus of some sort for you, but please don't let it take over your life. We don't get that long to start with.
     
  3. bjthink

    bjthink Guest

    You may remember

    Brucie,
    Thanks for your reply. I take your point. I'm willing to remain flexible on the subject of residential care, and in some ways I think it may be the answer to my mother's isolation, which she in part chooses, and in part hates.
    The Social Worker believes that she may not be suitable for residential care as she may intimidate and victimise other residents in her present state - the Social Worker was present at one of my mother's two-hour rants against me which appalled and terrified her. My mother had started the rant before the SW arrived and couldn't stop herself, despite her need, and her usual ability, to put on a good face to what she calls 'the authorities'.
    But as her consultant says, her state of mind may be overtaken by the illness, which could make her more manageable, and other decisions may have to be taken for any number of reasons.
    Pray God I don't have to make any decision. Let it be made by her, or by others, or by circumstances. I don't want to be the bad guy any longer.
    I hope that this may eventually end in peace and dignity, for all our sakes.
    At some point in my 60-year search, I still hope to find a person I can lovingly call 'mother'.
     
  4. gladys

    gladys Registered User

    Dec 21, 2004
    13
    usa
    I just want to say that I share your pain and anxiety. The words Brucie spoke are so true. Rest assured, that time and circumstance will have its way. So just let it. Once I accepted this, the pieces of my life were and are starting to be put back together. That's not to say that I don't have bad days, I do. I just feel now that I no longer carry the weight of the world on my shoulders. Just know that you have done the very best you can do and that no one can ever fault you for that. You know you've done the right thing because it was the right thing to do. Hold your head high and carry on.

    I recall a conversation I had with a lady who was speaking about someone who was recently deceased. She was telling me how this person was mean-spirited towards her, and mid-sentence she said, "I know one should not speak ill of the dead, but just because they're dead, doesn't change the way they lived". I think there's a ring of truth in that quote, albeit hard to accept. If you reach your "lovingly" moment, and I hope that you do, that's wonderful, and if it doesn't come, that's okay too. Just let it go and don't beat yourself up. You matter too.

    I pray that I have not offended thee or anyone here. Take good care of yourself.

    Love,
    Gladys
     
  5. Chris

    Chris Registered User

    May 20, 2003
    243
    Hello 'BJthink'

    On a point of practicality - you said "The Social Worker believes that she may not be suitable for residential care as she may intimidate and victimise other residents in her present state "

    Well - as I understand it , the local council in any area is responsible for the social care and housing of ALL the residents in its area. So ... that includes all people who are ill or disabled in any way.

    Most of us are lucky enough to independently provide housing & food etc for ourselves but when ill health or fraility takes a hand we need help. Sometimes we have to pay for that for ourselves, sometimes Social Services will fund all or part of it BUT , irrespective of our financial status it is the duty of the local council through Social Services and the Housing department to make sure there is enough appropriate housing and community services and in the right places to meet the needs of all residents in their area.

    By appropriate housing I mean - buildings & staff with whatever environmnets or care services people are assesssed as needing. These may be - sheltered or very sheltered housing and ALL types of care homes that can provide different types of care eg nursing , psychiatric nursing, speical care for adults with learning disability, all types of care homes for children with special needs etc etc If someone finds they cannot settle in any of the care homes in an area then they will be admitted to a long stay hospital ward - there are very few of these now - sometimes there is a care home that gives this sort of highly intensive care, has specially trained staff , higher staff ratios etc who will be able to offer a home to anyone - whatever high level of care they need.

    No longer are there 'Residential ' or Nursing homes' or worse still the dreadfully named 'EMI' homes - elderly mentally infirm. These days (since a year or two ago) there are only CARE HOMES - each of these is registered according to the type of care they offer eg DE/E This means Dementia/elderly. another category is MD which is mental disorder - these homes will offer care for someone with any type of mental health illness. some homes are registered as DE/E/MD .

    Hope this makes sense. Every local authority should have recently published a glossy brochure/directory of all its care homes which explains all this & will show you which homes have which categories & how many residnets etc etc

    Hope this is helpful. My Mum had to move homes several times & the last 2 moves were easier as by then I had visited all the homes in the area. its not always possible to visit homes ahead of time and can be emotionally draining. it may be an idea to start asking around & maybe visit one or two - just so that if the time comes you're not totally 'green' to this whole new ball game.

    Some care homes offer day respite - we never had that opportunity but it can work really well - the person gets used to being in the care home for a few hours at a time - if a permanent move becomes necessary - the transition can be very easy for them - we often think it wont be - but I know people who love their day care days ("its like a recluse here") - they feel safe & can relax as "we are all the same here" - I think they find it relaxing as if they 'make mistakes' - it doesnt matter. Often people settle into a care home very well - if it is a good one with very understanding staff. My Mum spent 7 years living in care homes & had dementia for at least 14 years so I have seen a lot !!!!! been there /done that - still shell shocked by the loss of my Mum even though we knew it was coming.

    Take care. Chris
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear BJ, so sorry to hear of your problems with your Mum. One thing I would say, you mentioned your Mum said you were the only person alive worth shouting at. This may be hard to understand, but to my mind, that was her saying you were the most loved, nearest, dearest person she had. If you could take it in that spirit, you maybe could find a little peace, I think your Mum does love you, she just has a whole bundle of problems that all her life have gotten in the way. Hope you know what I mean. Do what our wonderful Norman advises, take it a day at a time, and talk to us, we understand your pain, you are not alone, you have us anytime you need us. Love She, XX
     

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