Pretty desperate

Hi,

I am drowning with worry and guilt right now . My youngest son has autism a brain injury and epilepsy , he is in his own home and supposed to be supported by carers from an organisation however they are so thin on the ground staff wise plus his aggressive behaviour and complex needs mean he scares people,off . He is safe and ok but I am exhausted by the years of fighting the same battles with care agencies , listening to his repetitive moans and fears , he has horrendous anxiety and is extremely demanding even over the phone ...they tell me not to answer his calls but he is need img so much reassurance and company , he cannot live with me as he attacks me and abuses me and his brother . He rings many times a day especially now since social services cut his hours and the care company are expecting him to use buses , even though the carer has a car , also he is alone for many days and obsesses about everything everything worries him , his short term memory and slow processing means he needs so muc repeating and reassuring , he focuses on negatives and fixates on those who he sees have wronged him and talks of revenge , he speaks with such bad words and is rude and egocentric , I love him very much and still see so much potential in him but am exhausted to the point of actually feeling I would be beet term of not here at all ...

My mother is ageing and also has short term memory loss but won't get help and my 3 brothers don't talk to me or each other or see her much ..I have moved away as I have met someone and go home every two weeks but I feel I may have to leave and take back on more of a role with my family though I suffer from high blood pressure and m.e and am quite unwell with depression and anxiety . I am losing my mother slowly she doesn't remember much and when I do see her she doesn't show any interest or have anything to talk about she won't get help or go to any clubs it's so frustrating as there's so much she could do to help herself .

I am also getting so very angry , I blow up at the slightest thing and spit venom at my partner ...I don't want to see doctor as have been through all the help I know I just need a real break and people to start realising I am a feeling human being ...and there's only one of me ...

This weekend I haven't gone home I am seeing my son for longer on Tuesday and he can do anything he wants however the stress he has caused as a result , his worry and anxiety over the finer details of the change of routine ...is ridiculous although I told him I was sick he rang me many times yesterday ..confused , anxious , and his carer who he had yesterday said he was going to not work with him if his behaviour didn't improve as he was being unbearable ...all this caused by me putting myself first !!!!

I am drowning in guilt , fear , exhaustion and tormented by it all ...sometimes I seem only one option for me ..

I wrote to social services and have heard nothing back the care company are not really telling me much other than my son needs to be more independent and I shouldn't answer his calls !!!which will leave him isolated and even more lonely ..list this quality of care I don't think so ..lie was expelled from college last month so has no peer support , his care hours have been reduced so for several days he is alone ..though I have not officially been told this yet !!!

My eldest son lives in my house and doesn't want me home as he finds having me around difficult , he has mental health issues and doesn't want his brother around , he was abused by him my ex husband and bullied at school self harmed and suicidal though okish now I don't want to push him but want to sell up as the house is a burden and has bad memories ...

What a mess where do I start , my boys are both a strain , I,m sure I won't even get a Mother's Day gift and I don't get how other mothers who care less get showered with love and adoration .

Sorry I sound so pathetic but please love to hear any suggestions ..lthough I probably know the truth ...

I also have m.e and though was doing well lately am relapsing my body feels so crap , hardly sleep ..

Love to get some support on here .

Thanks for reading this

Virginia

12 Replies

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  • Oh Virginia, you have so much to put up with. Now firstly you need to start looking after yourself. With so many people leaning on you, you cannot afford to break down. For a start, have your boys got social workers? Talk to them and tell them (and make sure they understand) that you cannot continue like this and if they don't give you more support you will have to walk away and they will have to look after everyone. Contact Care for the Carers and get some counselling to help you understand what is going on and learn some coping strategies.

    Your mother - has she got someone responsible for her care - again talk to them. She needs to accept some help, whether she likes it or not. How about next time you visit, taking her to a day centre and spending some time there with her so that she can realise that it is a good place to be. Then don't make yourself so available and she might decide that she needs to get out for the company.

    Your eldest son needs to understand how vulnerable you are. If you sell the house, would there be enough money for a little flat for him? You could support him but not have to live with him. He obviously has no respect for you so he needs to do what you want - not you changing your life to fit round him.

    Do you think your other son might be better living in a more supportive environment? Somewhere where there was a live in manager and support staff? It sounds as though he is not managing where he is now.

    You love your family and want to do what's best for them all. However, driving yourself into the ground is doing no-one any good and I think you need to step back a bit and let them learn to manage a bit better without you. All the time you do everything for them, they are not going to attempt to improve things for themselves.

    Sorry, this sounds a bit like a lecture but from the outside I can see a family that are putting all the troubles onto you and taking no responsibility for anything themselves. Could you get your brothers together for once and get them to help you with your mother. Maybe they could persuade her to have more help.

    The very best of luck, but please.... look after yourself. You do not have to look after everyone at the expense of your own health.

    Jan

  • Hi Jam thankyou for your lovely reply sadly all you suggest I have tried , suggested and it's all failed ....mum WONT get help , my brothers Won't listen to me , my youngest has been in supported living and it ended badly , he was evicted due to his assault on staff also where he got a broken arm it was trapped in a door ....they won't section him am glad really but to go and be assessed in a brain injury unit he must be sectioned they also turned him down ...his social worker is off with cancer and the new one is the one who has cut his hours he now hates her and I emailed them Monday and text and called to say I was not happy and no response so far ...its v

    Crazy ...

  • Virginia please ring Headway first thing on Monday morning.

    They are wonderful people .

    Sorry I can't be more helpful.

    Love n hugs

    Xoxo

  • I havE been in touch with headway and they cannot help as his behaviour is so bad .limhad counselling from them but it just carries on thankyou though x

  • Sometimes it's good for you if there's somebody who will listen while you get things off your chest. People often feel better after a chat?

  • Hi Virginia,

    I feel for you tremendously, because I've been where you and your son are and have been (not with the autism or epilepsy though) mainly through the brain injury effects, although I also have other health issues, only 1 of which I have been medicated for, for a long time.

    Don't know if this will help you, i hope it will, but the first thing I did after I realised that too many different prescribed meds, over time, from my GP were making effects of the brain Injury worse - I came off the others and within days was feeling much better healthwise in my body, as well as reduced effects of B I. I also investigated my whole health history from birth which gave me a lot of health answers to what had led up to my Brain Haemorrhage causing the B I. Though some of my research also explained my occasional erratic behaviour both a teenager and younger adult. :-(

    First I suggest you make a list of your sons medication, take it to your local chemist, speak to the Head Pharmacist there and ask about any contr-indications there may be. If there are any, they COULD be making his liver toxic, the toxicity then passing via his bloodstream to his brain, bringing on his worsened B I effects or triggering an epileptic fit?

    Second, sit down with your younger son, talk to him about his anxieties, ask him what specifically happens that makes him anxious. Has there been a particular event. Suggest he writes things down, keeps a daily diary. The brain is an amazing organ, despite B I effects, the mind is capable of thinking logically for most if not all of us. We know ourselves what we see and hear - most events that trigger something in us would usually go totally unnoticed by others! Dissect each cause or bout of his anxiety.

    It's like tipping a jigsaw puzzle out of the box and putting it all back together in the right order again. Yes I have short term memory issues, but it only takes a word, place name or photo to get my long term memory immediately to the forefront! Perhaps something even happened during your pregnancy with him, an illness or any meds you might have been taking. A lot of thinking and analysing for you to do also, but you may find some answers and help there for you both.

    I am not medically qualified, but as said above, my condition made me start to research my own health history from birth and a lot of today's events for me, though apparently bizarre, are almost totally explainable, if not resolvable yet! I'm even convincing the Doctors re my own health sequence of conditions.

    Stay strong, I wish you and your sons well and hope you will find your solutions with support from your new partner. Sambs.

  • Hi thanks for your reply , he had meningitis aged 6 weeks resulting in a stroke ...yes I agree with all you said and there are so many things changes that are adding to his anxieties most out of my control .

    It is his autism that heightens the anxieties and trying to make him see the positives .

    Appreciate your time and hope you well thankyou once again Virginia x

  • sorry if this sounds harsh but YOU HAVE DONE YOUR BIT AND MORE

    move away with your partner ,change your phone number and remove all contact with all of them

    you only have one life and its being wrecked and your health is suffering

    the one thing you must not do is have a go at a partner who supports you

    sit down and talk to them with my suggestion and act on it

    i know what its like to have been put through the mill by an abusive relative and the only solution was to sever all contact

  • Dear Virginia,

    We all know how damaging it feels to put strong positive intent and effort into something and get no effect or, worse, push-back. To hear that you are in that position constantly and in triplicate is very sad and you have my deeply sympathy. Your family is so lucky to have you: The strength of your love and goodwill even under the circumstances you describe is very inspirational. Nobody would want you to deny that. The suggestion I would make is this: Recognize that in some situations the only thing that you can control is your own expectations. I have been in a couple of situations where I could see clearly what I wanted for someone dear to me and yet no matter what I tried their actions/perspectives did not change. I was getting frustrated and angry. It finally dawned on me that I could see and continue moving forward into a future of continued frustration and escalating anger, or, I could recognize that the other person was not going to change but that I could dramatically reduce the stress of the situation by lowering my expectations. It was impressive to find that "flipping that switch" in my mind changed the dynamic significantly. Because I was less stressed, the interactions with my loved one were less tense. In your case, you have tried to steer your mother in the direction that would make her happier. For complex and deep-seated reasons, she chooses not to. You can do no more. In the case of your youngest son, you are a dumping ground for his negative emotions. How much you present yourself for that does not seem to change his situation, so I agree that cutting back on your accessibility seems like the right path. I know it is hard put in less effort when loved ones are in distress. Consider this as a way to give them your pure love instead of love wrapped up in great anxiety and frustrations.

    Wishing you well,

    Taia

  • Its hard virginia,i have one at 20 with autistic traits an im afraid the attacks don't stop unless from young as my daughter did it to me ,i know this may sound bad but I had an older son who sounds as,poisonous with mouth he's never hit us an they don't listen,they treat you more as a possession than a mum,alot with problems do but my worry is you leave your relationship,then what ?whose there for you as you seem to of taken this on forever no,virginia,ask your son why he feels more superior to you also why he's doing it to all,out of interest I don't think he would outside to his own peer group,suggesting its control he's after an of You sorry don't mince my words because been there unless you stick an put rules down an no matter what cohurs

    ,to them nothings going to change.hes getting it because its like emotional black mail,your his mum unconditional love you need to attach rules to that to keep you safe hun pm,me if you want but id ask headway to help get rules in place so you can have a life too,he don't need to be seen you ask

  • I really don't have much advice I'm afraid but I think u sound like a wonderful person and mother who has just always been at the bottom of the pile :( u do not sound pathetic,u sound strong and brave

    I hope u get all the help u need or at the very least find this site as helpful as I have for advice and for the lovely people who r here xxz

  • I don't think others realise janey61 you have lived your whole life this way so by saying cut off all contact you being the person you are an the person others normally,hurt an your always the one caring,an nothing back,its hard breaking that cycle I would not say to anybody cut all contact as we both know our kids our our hearts an breath we take.What I would say is to have coping mechanisms,then these changes will come as ,do work with you for a change an then it will make you stronger so when,emotional.physchal black mail comes you will be able to use your already coping mechanisms, good luck

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