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

[Livingtothefull]

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 DS...it 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.

[Stripyhoglets]

I too dispair of what the Tory governments have done to this country since 2010 The deliberate looking away, the disingenuous whataboutery - justifying their approach. They basically don't want the state to have to support the disabled - that's what being a Tory is about - personal responsibility - they want it to be the responsibility of family or charities or families forced to crowd fund - more like the USA. People who vote for them don't like to have the actual impact of this gov demonstrated to them too clearly - as unless you need services like you do the impact of the cuts are probably not destroying you just maybe making life a bit less perfect. I don't have your situation to deal with but you sound amazingly strong to me.

[UnRavellingFast]

Hi @Livingtothefull just to let you know you're not talking to a void, lovely. I don't check into Mumsnet daily but I always check on you when I do because I care about what happens to you and your ds and dh. You're not alone. You have kindly eyes reading your posts and good wishes coming your way (if wishes were horses,eh!)

I'm glad the finding has been approved in principle. Fingers crossed.

How is dh? Is he fully recovered or is it ongoing sort of thing? Don't feel obliged to reply btw, I was just thinking from point of view of support for you or possible extra strain for you.

Take care. Thinking of you.

[HeyThereDelilah1]

I also just wanted to say that I hear you and hate this government for the unnecessary stress it puts on disabled people and their loved ones. The behaviour of the government is in my opinion psychopathic and whilst I’ve watched Brexit with woe maybe it will dismantle the conservatives and lead to a kinder more functional kind of politics in the end. You really are doing an incredible job, I hope your dh feels better soon. I wish I was a lawyer so I could offer to write some angry letters on your behalf...

[Livingtothefull]

Thank you HettyPain for your kind words. It means a lot just to be listened to and acknowledged. I am just doing what any conscientious parent would do; I am not special (I sort of wish I were - it might be easier to cope with then), it is our circumstances that are out of the ordinary.

We have already approached our MP and yes he is very supportive - and not a Tory thankfully. He is very engaged with local activities for the disabled whereas the previous (Tory) MP didn't give a toss and was conspicuously absent from events.

Sorry to harp on about this and in stating that the Tories have inflicted a great deal of harm and are still doing so, I am not saying that all Tory supporters are evil - but it is a mystery to me how the decent ones justify their position to themselves.

The funding for DS placement has been approved in principle; had to threaten legal action in order to get it. But we have been contacted by social services who told us that the formal process to approve it is ongoing; I am scared they might still change their minds and pull the plug.

[HettyPain]

I've just read through your thread and please know that you're not talking at a void. I won't pretend to understand what you're going through, I haven't been there so I couldn't possibly understand. But I'm listening.

Sounds like you're going through the toughest time. You also sound amazing. Fighting for what your DS needs at the same time as worrying about your DH. It's great that your DH is recovering though.

Hoping for positive news for you soon. With the school funding, is your MP any good? Might be worth asking for support?

Take care. Keep talking and don't feel alone. You're an amazing person who is doing everything you can to help your DS.

[Livingtothefull]

I'm torn to pieces. I'm hardly even a human being anymore. But despite that I do love DS, that is the only thing I have going for me. I don't want to be totally damned even though that seems to be where everything is pointing.

[Livingtothefull]

I am talking at a void I know. I wish it wasn't like this but I am talking at a void. Not even to it...just at it.

I am sitting up here as I often do of an evening...not wanting tomorrow to come as it always brings more trouble, and today I already had enough.

Living sits and shouts into the hostile void.....but why is it hostile? I can't really get my head around why it is necessary to shout. But there it is; we have a government that does not wish us well, and shows that in everything they do. It is hostile to me and my DS.

I cant get my head around why the environment is so hostile....a wealthy country like this one, which calls itself civilised, should be rolling out support for people like my DS whose quality of life is entirely dependent on what his country, which calls itself civilised, chooses to give him. You would think that a country like this would be proud of how it supported the most vulnerable.

But you would be amazed at the hostility this country has aimed at my darling DS. Feel ashamed yet? You should. (Not personally....but at what is being done in this country in your name)

So back to the hostile void. I beg to it: 'Please stop being hostile. Please don't send more trouble to my poor DS or to me! It is not character-building believe me! Consider our characters well and truly built! I think that I, my DH and DS have fairly good characters on the whole which don't need further building. Please, just ease off on the character building thing now and let us just have good lives....DS most of all.

'Have you thought about the fact that there were things you could do that could make our lives easier? Do you not care that you could do that? I can't get my head round that...anyone who doesn't care about making the lives of people like DS and us easier, is not really a human being.

Please, void, stop being hostile. Ease off the hostility and consider that a country that calls itself civilised should maybe just enable things for the most vulnerable people like my DS? I don't want to live in dread for his future....and I don't see why I should, this is a rich country'.

Please, 5th richest country of the world in which I live, put vulnerable people like my DS at the centre of everything. There are no excuses not to.

[Livingtothefull]

DH has had his op and is recovering. DS has been worried, the dear one knew that something was wrong but he doesn't quite understand what is at stake.

We are trying to get DS confirmed in his further education....but it is proving problematic. DS has been offered a place at a college for adults with special needs; but they keep telling us that the Local Authority needs to approve funding for the place (which they have advised us they have done in principle).

We keep telling the LA: what do you want us to do? The LA tell us they have approved funding for DS and the college say they have a place for DS...but they tell us there is still a problem. We keep telling them: bloody sort this out between yourselves, don't involve us as we are not equipped to deal with it.

I don't know why I am posting this here..I have written this incoherent missive but please don't feel too badly about me. I just want my DS to have a settled place.

[Livingtothefull]

Thank you UnRavelling, op is soon this week & I will be so glad when it is over. Nobody irl to talk to....well in fact there are some people and I have talked about a bit but I keep feeling that there is nothing to talk about, as though I am unduly upsetting people by bringing this up and it is in bad taste.

Fingers crossed and hope for better times, that's all I can do.

[UnRavellingFast]

Hi Op, so sorry you've had such a terrible evening. Thank god you and dh have each other. I hope his op goes really well. Take care and look after yourself.

[Livingtothefull]

Thank you HeyThereDelilah1, yes it was possible friend was a Tory and thus had a vested interest in this. I hadn't thought about that and tbh I don't ask friends how they vote....to me voting Tory is something people should do secretly and shamefully, like diarrhoea. So it is best I don't know.

I cleared up this evening and then have just been sitting here stunned really. It's not the first time this has happened, DS can't express or articulate his anger or upset so we get the brunt of it. But we are not well equipped to deal with it. DH has gone to bed exhausted.

[HeyThereDelilah1]

Is your friend a Tory by any chance? Can’t help but think she’s annoyed about the political statement rather than you ‘intercepting your son’s post’ because that’s utterly ridiculous given your situation. It’s your duty to protect your son and burning that junk mail was just part of that. I’m really sorry to hear you’ve had a rough night and added stress with your husbands condition, you sound like such a lovely family, I hope he gets better quicker than expected.

[Livingtothefull]

There's nothing to say about it is there? It is what it is.

[Livingtothefull]

Feel like giving up all over again now....again I can't and won't but part of me wishes I just could:

Have to go to my pretty demanding job tomorrow though have arranged a couple of days off this week because DH needs an operation which is q risky, he has a potentially life shortening condition.

DS just had a meltdown this evening. Screaming and raging, he knocked over and ripped out a large pot plant so there was soil everywhere, tried to pull pictures off the walls, bit DH on the leg and tried to bite me (his bites really hurt) and ripped & ruined my (expensive) top.

He calmed down eventually and we spent the last half hour clearing up, hoovering soil off the floor and settling him down for bed. DH leg is bleeding and he is stressed out....bloody brilliant given his condition is caused & aggravated by stress.

[Livingtothefull]

Thank you so much Candleabra for your kind words, that means a lot.

[Candleabra]

@livingtothefull I've just read the whole thread and I'm in awe of your strength and the love you have for your family.

[Livingtothefull]

Not toiling (although there is some of that involved); toileting. Every aspect of his care; eg have to give him a bath later this morning so that means soaping and rinsing him, drying him off etc. He can't do any of it himself.

He is both an adult and fully dependent. So when my friend said this I felt both resentful and also worried that I did have this seriously wrong in not treating him like the adult he is.

[Livingtothefull]

Yes I am responsible for his financial affairs BlackeyedGruesome as I am responsible (along with DH) for every aspect of his life: dressing, toiling, washing, feeding, the lot. DS couldn't be safely left alone even for a few minutes.

So I do resent it when anyone with no first hand knowledge of what this is like, presumes to pass judgment; all the same as this friend felt so strongly that what we did was wrong I wanted to have a reality check.

[BlackeyedGruesome]

Yabu burning it.... Should have ripped it up, jumped up and down on it a bit and then burnt it.

You are still has responsible adult and as such are responsible for his post presumably you are also responsible for his financial affairs as well...

[Livingtothefull]

Thank you so much UnRavelling, I hope all is also OK with you.

That's really reassuring you think that as I was worried that I wasn't doing the right thing by DS...wasn't treating him with the respect due to him as an adult. It is really hard to know we are getting the balance right as he needs support from us with all his life issues, I can forget he is an adult.

[UnRavellingFast]

Hi @Livingtothefull so good to hear things are a little easier for you. Glad the meds are a help.

Re your 'friend' what utter crap they are talking. Do they walk in your shoes? This is such sanctimonious nonsense. I would advise you not to give it another thought and to rethink any confiding you do in this friend.

You're doing an amazing job.

[Livingtothefull]

I have got into trouble with a friend of mine this morning because I told her we burned an election campaign leaflet addressed to my DS recently. It was from a political party which we don't personally agree with and we feel is accountable for a lot of the hardship suffered by disabled people like DS (will leave you to surmise which party this is).

In our disgust DH and I ceremonially burned it. We didn't show it to DS as it wouldn't have meant anything to him (he has a mental age of about 4).

Dfriend said that we had no right to destroy DS mail, that he is an adult and has a right to receive all his post and that we have in fact broken the law by intercepting his post.

I am a little taken aback by all this. To me, there is no point in passing on mail that he doesn't want, need or understand (personal mail is another matter of course - he always receives that).

We are talking about a vulnerable adult here - what do we do if really inappropriate mail items arrive for him that would upset him? Do we just pass them on regardless because it's 'his right'?

Could anyone advise me on this?

[Livingtothefull]

BTW I have been on Citalopram which seems to be helping. I call it the 'anti-fear elixir'....does that rhyme? I can't believe I am still standing, dealing with this and even joking. But it seems to help give me the psychological space to contemplate my own terror from a safe distance.

[Livingtothefull]

Dear All, I thought I would 'resurrect' this thread and give an update.....hope that is OK.

Well I got another job and it is all going well so that is all good. It is a supportive working environment which I do need.

However my DH health has taken a downward turn. He needs a very risky op in a couple of weeks time (they are fast tracking him). I will need to be at home with him while he is recovering as it won't be safe for him to be on his own.

I know he is stressed about it, he was talking really morbidly the other evening about how where his life insurance docs are, where he wants to be buried etc if 'something should happen'. He is stoic like me but I know he is scared and so am I. I don't realistically think the worst will happen....all being well he will come through it and his quality of life should also improve.....but part of me is just petrified about how I would be supposed to cope without DH. He is a superlative father to DS and does if anything, more than his fair share.

Just wondering how I will cope with supporting DH recovery and caring for DS is scary enough.

I had a bit of a setback at work.....a colleague (whom, ironically enough, I have bent over backwards to help) wrote me a really rude email and copied in various members of senior management because he took exception to something I had done, I did not demonstrate enough sympathy for his personal circumstances it seems.

It backfired on him actually....my manager was really supportive of me particularly as he is aware of my situation right now. But I am surprised how sensitive I feel about it at the moment. Normally I would just brush this kind of thing but I think I am struggling more than I even know.

[UnRavellingFast]

Hope you’re ok, OP. Thinking of you.