1. I get very little help and I cannot cope....am I a failure?

    Posted by swissmiss at Fri Jun 22, 2012 3:10 pm

    I wish I could cope, I really do. I dont mind if I have no life of my own but my youngest 20 year old son who has the most severest Autism is too much. I have been asking for proper support and respite for a year now since living in Southend and all I have had is emergency respite. Also we have seen a neurologist and been under the Psycihiatric service since May last year and they have resolved nothing and offered nothing to help. He can be calm as anything...sometimes for days on end and then suddenly and for no apparent reason within 60 seconds or less he is un such an inner turmoil and rage that he is punching himself in the face and all I can do is lie on him with my whole body absorbing his rage and waiting for the tsunami to subside. I have tried everything including nutritional approach, supplements, lifestyle and a weighted blanket whicb has some effect at night although some nights still he runs maniacally around the house still and I get little or no sleep.
    I have found a day club he goes to though yesterday I had to go and bring him home as they couldnt calm him and today he was so bad he couldnt go.
    In February 2010 last year someone posted that the 30 days a year respite they got wasnt enough and I naively suggested that perhaps full time residential care might be a better option for them both. We had no respite where we used to live despite trying for 10 years...Autism wasnt a disability they said and in any case they didnt have any services. As many will know it got too much for my husband. He had mental health problems and I think undiagnosed Autism himself. In 2007 he had disappeared in the night and jumped off a bridge over the A1 and was Paralysed. Then in October 2010 he took his own life in bed next to me.
    I feel such a failure to them both even though I think I have done my best to care for and help them. Someone said in February 2010 following my suggestion that residential care might be the answer that it was no surprise that my husband had jumped from the bridge. Am I really that bad? I love them both and would go to the ends of the earth to help them but it seems that i am not enough?
    All I have had is emergency crisis respite...12 days in 20 months. I dont knwo how much would be enough or whether any amount would be enough. I think residential might be the only answer for him now. Does that make me a failure or a bad person?
    Karen x

  2. Re: I get very little help and I cannot cope....am I a failure?

    Posted by avidreader at Fri Jun 22, 2012 7:09 pm

    hi karen,
    you are NOT a failure, i doubt anyone could have managed to do as much as you have,you have had so much to deal with and you are still managing to do so.i dont think residential would be seen as a bad thing,
    in fact it could be the best thing for your son, you and your other son, you could visit loads,i think you have to ask yourself a few questions to help you decide, what would you like to be doing this time next yr? in the next 5 or 10 yrs? or 25 yrs? you owe it to yourself and your sons to look after yourself, neil is with you all the time in spirit and the other family members who have passed over and they all want what is best for you,noone can tell you what to do and i wouldnt want to,
    you are not a failure keep telling yourself that.the only failures are the official powers that be that should have given you the support and services you need,
    from tracy x

  3. Re: I get very little help and I cannot cope....am I a failure?

    Posted by lizbet at Fri Jun 22, 2012 9:04 pm

    hi Karen, you are not a failure and you do your very best for you and you're boys, that is all any of us Mums can do for our children. you are not a bad person either, who has been saying these things to you?
    take no notice, you are doing what you can and when you can and take each day as it comes.
    sending love and hugs to you all
    Liz xxx

  4. Re: I get very little help and I cannot cope....am I a failure?

    Posted by kidsrus98 at Fri Jun 22, 2012 10:09 pm

    i feel you are doing all you can and more for your child, being a mum isnt easy and even harder when one has problems, i feel its the system that is the failure, not you,
    my child is 11 and he has been servely let down by the educational system and gps, i have asked for help and support and been told none was available
    it can be lonely, i had to move to get my son in better school so i now live in a area with no support, and know one to talk to or even get a cuddle when need one,
    i once got told it gets eaier as your child/children get older i think i aload of rubbish my lad is getting harder and harder each day so goodness knows who gave that word of wisdom
    but i think it very normal for you to feel the way you are but there isnt a right or wrong answer for any parent who is also a carer i do believe there is alot less help available if you are the parent,
    is there and groups in your area, or friends who will allow you to have a moan to them because lets face it we all need someone to unload on xxxxxxxxxxxxx i prob havent helped but i feel proud when i read yours and other storys on here so i know im not the only one in this type of situation, xxxxx :D

  5. Re: I get very little help and I cannot cope....am I a failure?

    Posted by swissmiss at Sat Jun 23, 2012 2:27 am

    Have just taken him to emergency respite after the GP failed twice this week to listen and act...6 hours at the hospital tonight and again needed the influence of the police to make them act. Weird world!? Hated taking him, hated leaving him...feel better knowing he wanted to go and is being looked after.
    Karen x

  6. Re: I get very little help and I cannot cope....am I a failure?

    Posted by CrystalBlueWolf at Sat Jun 23, 2012 8:35 am

    You're not a failure hun, keep your chin up and take care xx

  7. Re: I get very little help and I cannot cope....am I a failure?

    Posted by lynba2 at Sat Jun 23, 2012 9:50 am

    karen just read your message on here you are not a failure and never have been hun you have done your very best right the way through it dosnt matter what other people say about putting him in residential and you never drove neil to do what he did so whoever said that can go whisle in the wind i can remember when you went off the boards and then came back but you havent failed anyone its the people that you have to constantly fight that have failed you and the boys and neil you have always been there for them and will always be there for them your their mother ask yourself if the tables were turned could these so called professionals cope i dont think so you will still be able to see him huggs hun xxxxx lyn

  8. Re: I get very little help and I cannot cope....am I a failure?

    Posted by Coogybear at Sat Jun 23, 2012 10:43 am

    Karen, You are not a failure! You have had a lot to cope with and no person can take that sustained stress indefinitely. Without our health and well being taken care of, it's easy to become disillusioned and blame ourselves. I've done it too. Full of self doubt and wondering if it's just you. Reading these boards has given me a whole new perspective on things. Being able to hear the frustrations of others who's experiences mirror your own, makes you realise that it's the system that's at fault. At my lowest I was offered respite, but then told I wasn't severe enough. The system is a mess and carers lives are being put at risk because of it. You have to do what is right for you, don't feel guilty. Stay strong hun. Coogy.xx

  9. Re: I get very little help and I cannot cope....am I a failure?

    Posted by gaygal14 at Sat Jun 23, 2012 11:03 am

    Hi Karen,, you are most certainly NOT a Failure, after what you have been through with losing Neil,and what you are now going through with Angus and Ali, you are not super woman, just an ordinary caring carer and mother, not forgetting a caring wife/ widow also, as you loved Neil, and you love the boys, and we are not medically trained we do it by instinct, we do our best for our loved ones, but there comes a time, such as in your case where we have to rethink our options, I dont know much about residential care homes, but I think on reading your post that maybe it would be best for Ali as well as you, to give it some thought, and whoever that uncaring person was who made that remark to you about Neil jumping off the bridge, maybe they need to show a bit of compassion, and except help and advice instead of making cruel and uncaring comments, thinking of you and sending warm (((((((((HUGS))))))) to you and to Angus and Ali,xx take care,, love Maggie xx

  10. Re: I get very little help and I cannot cope....am I a failure?

    Posted by swissmiss at Sat Jun 23, 2012 1:16 pm

    I feel I failed Neil but given the lack of response from the mental health team and the emergency teams when he was trying to take his life I dont know how I could have saved him.I am worried that Ali has inherited Neil's mental health problems. He can be up one minute, relaxed and clam as can be and smiling, and plummet within 60 seconds to the point of punching himself repeatedly in the face..
    I hve been to our Gp twice this week to ask for help...two different GPs. The first said that there is plenty of support for carers out there so you need to go and access it! The second was argumentative...pulling letters up on her screen from the psychiatrist and randomly quoting bits at me to imply that I havent been giving him precribed medication despite the fact that the tamazepam doesnt wotk which had told them. I have been using melatonin to help him sleep...it works...the manageress of the respite home says that they have had it for clients and it is the best in her opinion...you can buy it over the counter in the US but here the GP said only a hospital doctor could prescribe and yet I bought it online from the detox people who Kerry recommended!
    So I asked her what she suggested I do to calm him as we had had 48 hours of really bad anger and self harm with him. She offered tamazepam...huh, did I say it doesnt work? She really was antagonistic so I told her that if I didnt get proper help then suicide would be the onlyl option I would have left.
    I came out fuming. Angus drove round in circles not knowing where to go next so he made a decision to take us to Tomassis for a meal. My phone rang so i turned it off..I really didnt want to talk to anyone at that moment. Then we went to a 24 hour pharmacy to see if they coud;l sell us melatonin...no. Ali started up again so I held him in the back of the car and we drove to A&E. I turned my phone on and there was a message to ring the police?! I turned it off then I thought I had better ring them and within minutes two police officers arrived. By this time it turned out the local WPC who had supported me in January when I could get any help from the NHS or SS had phoned JIm [the angel of Shoeburyness who is 79 and who has been my rock since losing Dad and Neil] and had searched the house! Oh well...
    Anyway they stayed with me till we got some help...one thing is they make sure the NHs dont palm me off again. So he has an emergency bed in the care home he went to last week...made up in the activity room wih his own flat screen TV on the wall...for the weekend and he can stay there in the normal respite bed next week.
    Why? Why does he not want to stay at home...but then I cannot give him round the clock awake which they can...he can sit and watch TV till 4am or whenever and fresh staff come on duty periodically to pander to his needs!
    I f he has Neil's bipolarish mind then I fear he will kill himself one day because he hasnt got the neurotypical mind to try and deal with it and even then thats what Neil did in the end.
    Oddly I was thinking recently that he probably has but that Angus seems to be OK. Ali looks like Neil too. Angus seems more like my Dad. Then Neil said to Angus in a spiritual reading that he is OK because he is more like me...they read our minds , what we are thinking...they see what we are doing...and comment on it in messages all the time!
    I will have to try and get him properly diagnosed and the help he needs but I dont know where or how! ?
    Thanks for your support everyone...much appreciated and needed.
    Karen xx :):)
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