To often feel like giving up (though I know I can't)?
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 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.
Livingtothefull · 04/05/2019 20:54
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.
Livingtothefull · 05/05/2019 10:15
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 · 12/05/2019 21:54
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.
HeyThereDelilah1 · 12/05/2019 22:49
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 · 12/05/2019 22:58
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.
Livingtothefull · 13/05/2019 22:52
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.
Livingtothefull · 18/05/2019 01:33
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 · 19/05/2019 00:50
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.
HettyPain · 19/05/2019 09:24
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 · 19/05/2019 19:30
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.
HeyThereDelilah1 · 20/05/2019 09:28
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...
UnRavellingFast · 20/05/2019 10:35
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.
Stripyhoglets · 20/05/2019 11:22
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.
Livingtothefull · 22/05/2019 20:06
Thank you all so much. I hope you are right HeyThereDelilah that the Brexit mess may lead to the demise of the Tories and to better times.
At the moment though it seems some of the worst of the hostility and aggression is coming out. The viciousness with which DS and by extension we, have been treated at times would have to be experienced to be believed. So I don't know this is all going to end....a civilised society supports its most vulnerable in my view, so we are ceasing to be civilised.
The cynic in me thinks Brexit may be a big distraction from their failings in every other area; maybe we are not supposed to notice that things are falling apart under their watch. No wonder they don't like being held to account over this: www.theguardian.com/politics/2019/may/22/amber-rudd-to-lodge-complaint-over-un-austerity-report
Livingtothefull · 25/05/2019 00:44
We just got a letter that advises us as follows: 'regarding the transport support that was offered to DS while he has been at school....as he is turning 18 this summer the transport will no longer be provided by the Transport team'.
The letter ended with this heartfelt sentiment: 'I'd like to take this opportunity to wish DS all the very best for the future'.
2 trains of thought emerged from this:
It is so good to know that now that DS has come of age he no longer needs transport as he has miraculously recovered the use of his legs on reaching adulthood;
I am sorry that Theresa May was upset today because she had to resign; however on balance, I feel a lot sorrier for the rest of us especially the most vulnerable. I don't know what the future holds for DS.
Livingtothefull · 26/05/2019 23:25
I am sitting here contemplating sanity.....do I have it? How can I tell? I am not sure that I am sane really...have had episodes lately where I have been literally nauseous from stress.
I feel like an angry, bitter, twisted-up travesty of a human being....yet the only thing to be said in my favour, is that I am a travesty that dearly loves my DS. Will that be enough though...in a country that seems to be falling apart? Will that country care for its most vulnerable like my DS?
HettyPain · 29/05/2019 09:04
How is your DH now? Hope he's doing well.
Are you entitled to any other support when your DS turns 18? I'm wondering if something else should kick in? But no doubt you'd have to apply for it.
Also wondering if you need to get to see your own GP? For you. You could talk about how you're feeling and they may well be able to help.
Livingtothefull · 03/08/2019 23:42
Dear all, I am feeling thoroughly guilty because I haven't acknowledged your kind posts for far too long. I can't say how much I appreciate and value them. It may ring hollow but it is true.
DS is I hope going to the adult special needs college in September....but nothing has been finalised because the funding still has to be formally approved. Even though his school has already done the handover with the college and prepared him for it.
So I sincerely hope it is going ahead as planned, otherwise we will have the considerable challenge of explaining to someone with severe learning difficulties, why the future we had prepared him for isn't happening after all.
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