1. A little help?

    Posted by swissmiss at Sat Jul 28, 2012 5:29 pm

    Today I would say that the whole concepy of "getting a little help" is as far from a possible reality as is possible! If I cannot carry on then I shall simply have to give up and pass on living. Just hope my capacity to live and care which is now down to 10% max continues as noone cares enough to make a difference and the harder I fight for help the more oppressive the so called caring services become.
    As I have had to take myself and my sons to A&E and fight to get help when my eldest [who himself has Aspergers for which there is no support] and I lose the capacity to care for my youngest severely Autistic son...against the force of non-caring which is the NHS and now they are accusing me of being aggressive...which I am not...I never shout or swear...sometimes I cry when they are aggressive to me...but I have had to refuse to "go away" when they have tried to throw me out and I have had to ask NHS staff to back off from verbally abusing us....today i got a letter awarding me a yellow card and threatening to ban me from attending the hospital...what do I have left? Where do i go now?
    I called the community WPC who has supported us when we have been unable to cope due to failure and neglect by SS and the NHS...she said that they also get a rude response whenever they go to A&E so she has taken my letter from them and is going to confront the consultant manager who sent it.
    The fact is that we are the lowest echelon of society. My son would once have been kicked in the gutter..then as society tidied things up shoved in an asylum...then when society liked to think it was more caring sent back home and then when they managed to develop a system as SS are expert at left without any support to the care of his parents and now...reality...having lost my darling husband under the strain of caring alone combined with his own mental health weakness which was as a result of his obnoxious teacher parents not understanding him and bullying and abusing and humiliating him[as many of you know he finally succeeded in taking his own life by stabbing himself to death in bed next to me while I slept, having paralysed himself by jumping off a bridge 3 years earlier]...they are leaving me to suffer under the full weight of an evil system which employs arseholes to fail and hurt people. They supply them with every protection and people like us with none.
    Went to our GP again for my sons ingrowing toenails...he picks them as part of his Autism. The atmosphere is cold since the GPs refused to help a month ago when I said I couldnt cope without help. On the notice board was a newspaper cutting..."Why GP receptionists are grumpy!"...apparently it is because they suffer from emotional burnout...funny they seem devoid of feelings and emotions to me! What about the patients who are left in pain and suffering because of NHS failure????
    Minor problem that but suffice to say that he has antibiotics and I will have to pay for a private chiropodist to repair them as the NHS dont consider that urgent and he would be on antibiotics for a year sufferring with them weeping otherwise!
    We are off for a walk now in an effort to keep ourselves living and not going under with the feelings of pain and despair.
    Karen x :cry::cry::cry::cry::cry::cry::cry::cry::cry::cry::cry:

  2. Re: A little help?

    Posted by avidreader at Sat Jul 28, 2012 7:17 pm

    hi karen,
    sending huge hugs to you and your sons, just a thought but have you thought of maybe going to the press to name and shame,local papers and tv can influence change.
    from tracy x

  3. Re: A little help?

    Posted by gaygal14 at Sun Jul 29, 2012 10:37 am

    Hi Karen,,, I agree with Tracy,, get the press involved and also have a chat with your MP,, between them they should be able to help,, we had a lot of help from the press as well as our own MP, though the circumstances were different in our case,, one day I will tell you the whole story,, sending ((((((((((Hugs, to you, and to Angus and Ali))))))) take care,,, Maggie xx

  4. Re: A little help?

    Posted by swissmiss at Sun Jul 29, 2012 7:12 pm

    I have called the WPC who supported me when i fell apart in January. She is taking the disgusting letter from A&E to speak to the consultant in charge and I have given her an acoount of what happened. They are attacking me because I said i was going to complain about them. The WPC said that the police find their attitude in A&E rude and unhelpful a lot of the time and Ali's Speech therapist said she has had similar experiences. Angus, bless him, looked at the Dr Foster report on the hospiotal..it doesnt rate very well and it said they dont operate a proper complaints procedure! Sometimes, dont get me wrong, they can be lovely but at other times and this was a quiet time they were disgusting. I wish i didnt have to go there but it is I have been told where I should go in future if I cannot calm Ali!
    I feel a bit stronger today. I sobbed in fear last night in bed and Neil came in spirit really strongly to hold me tight.
    We have a meeting with the Psychiatrist who is in charge of all aspects of Ali's care needs and mine now..through this CPA...so I shall ask him what I should do in future. The SS manager had suggested seeing if they could put a flag on their records in future if I ahve to go in so they know how to respond..this was before this happened. I hope that perhaps I can get them all to do something.
    The thing is that last year I had an emergency admission which was a fiasco. They were supposed to give me intravenous antibiotics but noone could put a canula in...well there was a phlebotomist who could but at night or over the weekend noone was any good at it and you waited up to 12 hours for the one inadequate person to arrive and fill you with holes and either fail or as they did in the end tissue the canula...this resulted in a nurse slamming two huge syringes into my arm until I though it was going to explode. I passed out, I hallucinated and escaped from the ward in fear at 2 am...the matron in charge moved me and was going to investigate especially as the nurse admitted she had been rough with me...did they? You guessed...swept under the carpet. Its no wonder there are really bad instances of bad care. In the end I had to discharge myself because SS refused to give Angus any help in caring for Ali who was the reason i was in there because of his challenging behaviour...despite there being no other family to help...and so that I could at least take oral antibiotics. I coudl have died..but then you hear of that heppening due to glaring hospotal failure all the time.
    I think we had better find somewhere with a well rated hospital and move there.
    Karen x

  5. Re: A little help?

    Posted by suejane at Sun Jul 29, 2012 9:46 pm

    Hi Karen
    I do feel you are still grieving and i wish you had someone to talk too eg Cruse so you can air your feelings as much as you want to a personsat next to you who will show you compassion and give you a hug maybe- we give you cyber hugs!Then maybe you can deal with all your many worries and feel you have support and somewhere to go to relax and time for you. Do you have a friend locally who can help with the children?We all admire you for your fantastic strengh but isnt it time for a bit of TLC for your self?Hugs you friend Jane xx

  6. Re: A little help?

    Posted by swissmiss at Mon Jul 30, 2012 12:16 am

    Hi Jane
    I have had plenty of counselling. I am on my fifth counsellor if you include the mad one I saw twice who suggested all sorts of weird nasty things..part of her mindless mind warped by too much theory perhaps!!! I had 13 weeks of Cruse counselling last year but we parted company when she couldnt stop suggesting that Angus wasnt really an Aspie! That I invented his disability. The current one has been very sweet and listened well and tried to boost my confidence but I got fed up of her saying what a privelege it was for her to share my life! I ended up letting rip about all the anger I feel towards all the people who failed Neil or hurt him. Where do you go from there? Maybe it helped but I cannot talk to her just now so it is on hold. An hour a week doesnt really touch the surface anyway.
    How is your counselling going Jane? Do you feel any happier from it?
    I dont think of our boys as children as they are both well over 6 foot and in their twenties. Angus was 25 on Thursday.No I dont have a friend to leave them with but I can leave them with each other for a short time.
    I was just thinking how bloody odd my life is. Yet I dont feel odd. How many people though go through what I have and yet still not get the support and respite they need and end up falling apart and having a vulnerable persons order placed on them and still get left to cope and still go to their GP or hospital and get treated with contempt? I might as well give up trying.
    To be honest Ali could be going to a day centre where they operate a herding system and he has to spend the day with others screaming and shouting and rocking and grabbing hold of him in a vice like grip and not letting go and staff who dont know what to do or to respite where they dont care for him properly...leaving him unshaven and dressed in a jumper with no t-shirt so he swelters in the heat or no belt so his trousers fall down... and give him filthy stained bedding and send him home with bruises. I am told that I should accept that because I need it but for some weird reason I wont.
    The good news is that he is being lovely at the moment. We started seeing a nutritionist and she has worked wonders. Instead of heavy drugs he is on Stabilium which is a very safe supplement which regulates mood, balanced vitamins and homeopathic tablets. Instead of hitting himself he is dancing and stimming but is choosing music to listen to and actively engaging in games again. Slowly we have found answers..the weighted blanket and melatonin which kerry recommended work well too. No thanks to the NHS or SS. Their neglect has made the last 21 months since Neil took his own life pure hell.
    I get my comfort from Neil, my Dad and all our other loved ones in spirit...what a gift to discover that our spirit survives our bodily passing. Ali has always seen spirit and Angus and I have always had some experiences. It is so comforting that Neil can be with me in that way but how I long for him in full.
    I think the world is going downhill at great speed which isnt that surprising with the rate of change...people are fast losing the ability to care, to show compassion. We will survive ..as long as we can..by our own enterprise but I despair of ever getting anything decent out of the NHS. I wouldnt mind paying something if they could offer something like a health service which didnt involve you risking your life in order to get treatment!
    What I would like is a little help. But I dont expect it will happen. Perhaps we will improve in spite of getting no help..or perhaps not? Its a day by day experience.
    Karen x :)

  7. Re: A little help?

    Posted by Flowerpower at Tue Jul 31, 2012 4:40 pm

    Oh Karen .... my problems pale into insignificance after reading about yours. What a struggle it sounds for you. I have had PTSD this last year and I have just had a flower remedy made up specially for me based on how I feel. I have been taking Bach flower Rescue Remedy when things get bad and that does help a bit but this is much stronger I believe and specifically for me. There are 16 different ingredients in it which I take 3 times a day.

    Have you ever tried anything like this? I am on some medication for my anxiety but I really hate taking stuff like that so I just take one a day instead of the 3 I could have.

    I am getting no help from social workers either but our probs don't sound as serious as yours.

    Take care.xxxx

  8. Re: A little help?

    Posted by swissmiss at Tue Jul 31, 2012 6:27 pm

    Hi Flower!
    Yes i do believe in homeopathy and flower remedies. I am seeing a nutritionist/homeopath to try and help with my grief and also gallstones, fatty liver, diverticulitis, weight loss and all those funny hormonal changes women in their 50s get!!! The only problem with the flower remedies she has given us for our grief ..different for each of us, is that they make us uncontrollably weepy. I did discover an ayurvedic product ..Holy Basil {Tulsa}..it isnt cheap but it is amazing. It calms instantly and helps my youngest when he gets the grief surge which causes him to hit himself and I find it takes the edge off my emotions very quickly. I do still like a couple of glasses of wine a day although really I should stick to herbal tea...Twining Cleanse tea which has spearmint rather then peppermint in and nettle and milk thistle which is good for my liver and gallbladder is very calming.
    I dont see how I can stay sane and calm with SS involved!! What DO they add? We had a lovely relationship with a day club for Ali until they got involved and started stirring things up by questioning them about how Ali is and what they think of his home life. They know what we have gone through and felt caught both ways apparently which damaged the relationship. SS just cannot support without damaging. For a couple of weeks now we have been just living our life on our own apart from a lovely speech therapist and a new OT. I am going to have to ban anyone who damages or we will never ever have a sane calm existence.
    I find I get wrapped up in all their stuff and any chance of focussing on normal things flies out of the window. They dish out their reports and comments..usually arrive on a Saturday morning while they are having a relaxing weekend and you are left stewing and worrying!
    Karen x :-)

  9. Re: A little help?

    Posted by Flowerpower at Tue Jul 31, 2012 7:21 pm

    That's good. :) Just out of interest I will let you know how I get on with my remedy. This is only day 2 and I do believe I feel a bit calmer and less tearful today. I have asked a Learning Disability Nurse to come and have a chat tomorrow so it would be nice to get someone on our side. Take care.x

  10. Re: A little help?

    Posted by swissmiss at Tue Jul 31, 2012 9:36 pm

    Hi again
    Can i ask..where is the Learning Disability Nurse coming from? Are they hospital or community based? Ali has a Community Mental health Manager for LD..he does nothing for him though.
    Have a look at Stabilium. We have been taking it a couple of weeks and it has settled us all quite considerably. If you Google it there are several useful articles and studies available.
    Karen :)
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