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To often feel like giving up (though I know I can't)?

143 replies

Livingtothefull · 15/10/2018 23:39

I got home from work this evening & found out from DH that DS had been taken to A&E. DS (17) has severe physical & learning disabilities and epilepsy, he had a couple of seizures last week and today fell whilst at school and had a head injury which needed stitches at A&E. We are trying to get the full story out of the school as to what happened.

DS is home now but we have been told to keep him home under observation to check him over 24 hours. So I had to text my boss today to say what happened & that I couldn't come in tomorrow as needed to stay with DS. Her response was sympathetic BUT:

AIBU to worry about what it means for my work? I have a new fairly senior job & am on probation....I have a lot of deadlines, AIBU to worry they will feel I just can't give the commitment my job requires due to my personal circs? I do find it hard to juggle the job with worries about does cause me to panic sometimes, then I worry they think I don't have what it takes to be successful in the role.

AIBU to just feel horribly isolated most of the time? When the team talks about their weekends, who they visited, shows and tv they watched and sports they played I just feel they are on a different planet? Not their fault at all....but I spend all weekends looking after DS's personal care (that phrase hides a multitude of sins), I touch sometimes on what I have had to deal with & I can see them getting embarrassed, that they don't know what to say. So I change the subject to spare their feelings and move onto more cheerful subjects. What else can I do?

AIBU to be just seriously upset and devastated today at the state of my DS? His face is bruised all over & he needed stitches, his eye is swollen so will probably have a black eye in a day or two. I will have to watch him carefully tomorrow to ensure he doesn't deteriorate or have another seizure, all being well DH will care for him Wednesday & I will go back to work as if none of this happened.

AIBU to feel lonely and sad and realise that there is NOBODY to talk to? I won't ever give up though, am in no danger of doing that for DH sake - oh but how I wish things would get easier and I didn't feel so horribly isolated.

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Livingtothefull · 04/08/2019 00:04

I consider that the disabled are being deliberately targeted in my country (the UK) for abuse. Some friends and family members dispute this and I am tired trying to argue.

A year ago DS's school bus has been shot at with an air gun while it was driving to school; by some miracle none of the young people aboard or their carers were hurt. It is very obviously a bus for the disabled; the huge wheelchair symbol on the back of it is a bit of a clue.

Most of my family/friends argue it is just a random attack that could have happened to anyone. Yet many of them have travelled every day by car/bus/train for 50 years or more without being the victim of an air gun attack. I ask them why this is; is it just that the disabled are extremely unlucky?

A few months ago we went to an event which was scheduled at a dedicated centre for young people with special needs. We had heard rumours that some of the locals objected to the fact that they couldn't use the parking facilities at the centre because they were available only for the young people and their families.

So at the end of the event we came out and found that someone had put a padlock on the car park outside the centre so nobody could get out. Bear in mind the fact that many of the disabled young people had complex needs that required them to access care/medication etc promptly so being confined in this way directly endangered them. In the end we escaped because one of the attendees arranged for her relative to turn up with equipment to remove the padlock.

The hostility against disabled people in YOUR COUNTRY (the UK) is happening now. It has to be experienced to be believed, please believe me.

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Livingtothefull · 04/08/2019 01:03

I just want to be confident that my poor dear baby will be looked after in his country when we are no longer able to do it for him. The idea that that won't happen - the fear that he won't be cared for and valued for who he is..........well I don't want my morale to be destroyed, and even more I don't want a shit future for my DS. But I fear for the way things are going in this country.

Please please please ensure that the worst doesn't happen.

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Livingtothefull · 05/08/2019 23:25

I am sitting up because there is no point going to bed. DS is refusing to sleep and if he won't sleep, neither do any of us. I am so tired, I am worn out. I have to wake up in 6 hours to get DS ready for his carer then do a day's work. It is stressful at work at the moment. I am nauseous and faint with stress.

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Livingtothefull · 06/08/2019 22:33

I am sitting up again this evening. DS has no inclination to go to sleep so again, neither can I. He is far too vulnerable to be left alone so no question of that. He is also an adult so I can't force him to do anything. I have work tomorrow, 5:30am start for me. What to do eh?

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WhatAMum01 · 06/08/2019 22:50

Hi hun,I'm sitting up severally autistic son is 4 and every night takes 3 hours to get to sleep with me running to the door and carrying him back to the bed an average of 30 times. He's non verbal and has absolutely no understanding, he's the type of autistic no one talks much about or can help.I barely leave the house and have two other is very challenging right now and I'm walking a tight rope of stress.I'm just hear to say I hear you.


Livingtothefull · 06/08/2019 23:15

Hi WhatAMum01, thank you so much for your post & I know that I am not alone. It is so thankless at times, nothing I can say except how much respect I have for you because I know how relentless it is. I do hope you have rl support, you certainly deserve it.

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Livingtothefull · 08/08/2019 22:31

Sitting up again as I frequently do of an evening....running my life badly as usually. Sitting fretting. Hoping that I can keep the whole edifice afloat, I dearly don't want my life to come crashing down on me.

I don't want my life to be hard any more and I want to stop worrying about my DS future. I want a government that steps in, encroaches my fear, and says something along the lines of the following:

'LivingttF, allow us to intercept your fear and kill it stone dead here and now. I understand that it is natural for you to worry about your DS future, but truly: we've got this. We care about the most vulnerable in our society and we will ensure that your DS will have a secure future. Look at our track record which demonstrates to you how much and how consistently we care for those who need to be cared for. So you can be confident that when you can't care for your DS any longer we will ensure that he is in a secure, affectionate and comfortable environment to the end of his days. Because we recognise that we govern a civilised and advanced society, and as such we take pride in meeting our moral obligations towards the most vulnerable members of our society''.

Do you think the government we have at the moment would ever say and mean that? Vulnerable people are DYING in this country through not being cared for. Do you understand how terrified I am? At the moment DS is loved, cared for and valued by us but one day that rug of love, caring and value may be pulled from under him.

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Livingtothefull · 08/08/2019 23:53

Still sitting here, long after I should have gone to bed. I am not meeting my moral obligations at all - here, to go to bed in good time and ensure I am well and rested enough to care for my DS tomorrow. Fear needs though to subside first.

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Livingtothefull · 10/08/2019 23:07

Sitting here again, contemplating despair - a luxury I can ill afford however so I don't go there. Happiness is something you choose because you are compelled to choose it. It is not enough that DS has a home; it has to be a happy home

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Livingtothefull · 10/08/2019 23:52

I remember agreeing with DH when DS was first born and clinging to life that, if DS were coming home at all he was coming home to a happy home.

I dearly love my DS and he is a happy boy in a happy home; it is a shame that many (including the current government) don't agree that DS should be happy.

DS has been accepted by an adult special needs college and has just received the paperwork welcoming him there. But the local authority haven't officially approved the funding for this as yet so there is a chance he won't be able to go. That is just madness; to try to explain to DS who as he has special needs gets stressed out by uncertainty, that he may or may not go to the adult education college if the LA get their act together and approve the funding.

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apapuchi · 10/08/2019 23:56

I'm here and I'm listening to you. We have a six year old son with ASD, he's non-verbal and about as severe as it gets really. Of course he's our pride and joy, as is your son (so clearly) despite the difficulties.

Have you heard any more about the college? I wish you had concrete news either way, the way parents of disabled children (and the young people themselves) are subjected to such a lack of support and ongoing uncertainty is so cruel and - as you say - not the mark of a civilised society. You are a wonderful mother, wife and person and what circumstance and the lack of support in those circumstances has done to you is unforgiveable. You have so much to give in your personal and professional life but haven't been supported or cared for in a way which would allow you to thrive in either. I completely understand and empathise with regard to how your confidence and character and SELF has been eroded. You can always message me if you need to vent, but this thread is a vent for you I know, I just want you to know it's not into a void and people like me and others who have always replied hear you and wish you all the goodwill in the world.

Sending you love, you're doing this day by day or maybe even hour by hour. Steps forward, leaps backwards, but you need to prioritise yourself and fighting for what your son and family deserve. I know you are/do, keep on keeping on.


Livingtothefull · 11/08/2019 12:34

Dear apapuchi thank you so so much. I wish all the best to you with your little boy and I hope you are not encountering the same kinds of issues like these.

We just received the paperwork through to welcome DS to the college, all addressed to him by name. Though nothing from the LA although they have advised us verbally that it is approved.

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Livingtothefull · 23/08/2019 12:51

Sorry to sound so negative but here I am again. I am on 'holiday' from work, holidays are spent juggling days off with DH and carers and this week is my turn.

So, bathed & toileted DS as usual, about to serve him his lunch then take him out. I have had quite a stressful morning with DS insisting on having the phone so he can make calls. I can't allow him to have the phone as he isn't capable of making any calls but he can dial 999 for fun. He understands that it's fun to wind me up and no more than that.

Cue tantrum, banging his head against the wall and trying to bite through his iPad recharger. I have to restrain him but it is hard to restrain a full grown adult with no sense of danger.

A holiday would be nice; this is a 'holiday' rather than a holiday. The isolation is the worst; I have tried to explain to family members what it is like but nobody gets it really.

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Livingtothefull · 23/08/2019 23:08

Sitting up AGAIN, I really should know better than to waste energy contemplating how horribly hard everything is. I don't have any courage, no fortitude, nothing. I am just a 'thing' that does what has to be done.

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Livingtothefull · 23/08/2019 23:31

There is nothing to say to me is there? I am not normal, not a human being anymore. Just a loving, caring, working 'thing'.

And I know carers are not valued....every time I see the people who do the difficult, occasionally downright dangerous work of caring for SN people like my DS and being paid low wages for it.

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Livingtothefull · 27/09/2019 23:41

Well my dear baby boy has started at his college and it all looks good. It got sorted out.

I have emerged, dazzled and blinking (because the light is still a bit harsh) from the dark night of the soul. We have a bit of a reprieve because my DS is currently happy and from day to day, that is all that matters. But I am still to be convinced that this country will secure my DS future when we are no longer able to do so.

How I want to be a parent worthy of my DS....I can never be good enough. Because I can't be sure that when I am no longer able to care for him myself, my DS will be cared for. I can see at first hand just how much hostility there is against the disabled, from a significant minority who see people like him as 'scroungers' and 'a drain'.

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Hecateh · 28/09/2019 00:03

Thi is the first time I have seen this thread. (not been here long)

I am appalled but not surprised (unfortunately) at your life

So pleased though that you have at least got some reprieve and +++ that college works out


Livingtothefull · 28/09/2019 00:42

Thank you so much Hecateh for your message.

For now my DS is happy and that is all that matters to me. But to cut a long story extremely short; DS has been treated extremely cruelly in the past. I have also seen the cruel treatment that has been meted out to young people like DS.....I don't want to tell other people's stories here but suffice it to say that there is no limit to the cruelty of a minority of people.

I hope that my DS is always happy. But he has just me and DH, no siblings to take care of him. And we won't be around forever.

I dearly want DS to always have good people in his life always who will protect him. But if anyone ever mistreats him, causes him to suffer and feel despair.....I hope I get to greet them at the threshold of the pearly gates, so I can drag them personally into hell.

That is the best guarantee I can give him....I wish it were better and that I were better. More omnipotent you know. So I could secure my DS future.

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