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 · 25/10/2018 22:28
Thank God it's Friday tomorrow, is all I have to say. Another ridiculously early start getting DS ready for his carer getting him dressed, toilette and breakfasted and his medications down him, trying to keep him on side and cooperative - then going off to work and hoping that I won't be criticised too much tomorrow (because I am inappropriately, inordinately sensitive to criticism) - it is all too much. Yet it isn't because, ridiculously yet in plain fact, I am doing it all.
But I do want to find a better way because it isn't a life. The only reason that I don't get depressed so that I can't function - that I don't give up - is that there is no 'me' to give up. I am not a person, just a thing that does what has to be done.
Tell me if I am getting too intense and unduly negative. Do I need just a good telling off & shaking? But as I say, there is not much of a 'me' to tell off and only a desensitised body to shake.
UnRavellingFast · 26/10/2018 10:34
No you don’t need telling off in any way shape or form. You deserve praise and need support. Can I ask how involved your dp is with the routine care you describe? Also, if it’s not intrusive to say, your words do sound like they are coming from a place of very understandable depression. When you see your gp please don’t minimise your feelings. X
MrsPatmore · 26/10/2018 10:55
Although I find that counselling doesn't practically help, it does help to ease the emotional burden. Just knowing there is a sympathetic ear where you can explain everything that goes on in your life without fear of worrying what other people may think. It can stop you from going over the edge.
flapjackfairy · 26/10/2018 17:07
Can I say in the kindest, gentlest way possible that it may be time to look at long term options for the care of your son ?
I know all carers recoil in horror at the thought of supported living or care options but I have known several people who have been forced down that road due to their child's aggression and risk to themselves as well as the carers. Even if that is not something you want now would it help to research and plan the options available for when your child becomes a legal adult ? It may help to see that there is a long term plan that you are happy with and it may give you a glimmer of light at the end of the tunnel because if you crack completely and the wheels fall off entirely where will that leave you all ? You must look after yourself in order to be able to care for your son whether that be at home or in another setting.
I hope I have not spoken out of turn. I know that we all want to do it all for our children for as long as we can but you need to think of the wider picture as well x
Livingtothefull · 26/10/2018 19:58
Thank you so much again. Just to respond to some of your points:
Yes we have thought about DS future, no you are not speaking out of turn on this so no worries. We did actually have a residential/educational plan all set up for DS for the next few years to take him into adulthood and approved by the institution, he had a place there - however sadly the local authority refused to fund it due to Govt cuts and as the current arrangement is cheaper for them. Still they will review next year so maybe will have better luck. I know that having him with us isn't going to be viable in the future - I just want to enjoy being with him as he grows up & have some of the burden of care taken away.
My DH is a superb hands on father to DS so he easily does his share of DS care, I have no issues at all on that score. But because this puts a strain on both of us I have concerns about his health too so feel it isn't fair to unburden myself to him very much.
I need to find ways of ensuring DS care is manageable while learning to dial down the stress & emotional upset. Of course it is really hard to prioritise myself but I need to do what is necessary for my well being, there are times (like this week) when I get dangerously close to the edge.
lily1110 · 26/10/2018 21:45
Hi there, I just wanted to say what a fantastic mother you sound, I’m also in total awe of you holding down a career as well as the complex care of your lovely son. I bet you have no idea how much you are respected and valued at work. I think the cuts you mention are utterly unlawful and cruel, disabled people and their families are the absolutely last people who should be hurt by funding issues and it’s barbaric that this is happening in 2018. People in government need to be held to account. I’ve often found in life that things reach a crasendo and feel completely unmanageable and then something gives way and things become a bit more bearable. The 5.30 start sounds so tough on top of everything else, is there any option to change that? Also your friend with the adult kids at uni and no job sounds a total knob (sorry) - I actually think she must envy your career to say something so crass.
Livingtothefull · 27/10/2018 16:56
Thank you lily1110 for such kind words. Yes the cuts are wicked and the Govt have a lot to answer for, I can't trust the on anything now. That is very sad.
That is an interesting take on the situation with my friend.....it never occurs to me that anyone would be envious of me. It is not that my life is all terrible there are so many good things and I wouldn't be without my DS despite everything - but I can see how for somebody looking from the outside in it would appear hard
The work starts should ease off a little once DS half term is over as the school will cover a lot of the caring tasks although the early starts won't go away entirely, sadly - but at least won't be so pressured first thing.
I am feeling a bit peeved though today. I have my doctor's appointment next week, it was an early one and I had taken a precious holiday & planned to go for the appointment then had a delicious day just to myself. Some free time with nothing I had to do, nowhere to go - imagine that.
But we have been contacted by DS school and they want us to go into a meeting with them to discuss some concerns. In the afternoon of the same day as my doctor's appointment. Imagine that, my precious me time cruelly snatched away - I am feeling it badly. I have to go to this though & there is no point rearranging for another date, I would just have to take another precious holiday.
So yet again, I feel as though my bit of personal space is being taken away because somebody has lined up something else for me to do. That is my persecution complex kicking in though, I know this can't be helped.
Livingtothefull · 28/10/2018 00:32
I will take a moment or two to steady and sober myself, then I will write and plough on.
No though...better to wait until I am actually sober. I sit up here as I often do of an evening. I feel that I have to articulate albeit badly, on behalf of my dear DS who has been robbed of his voice. He loves the world, he loves everything about his little life....I just wish it loved him back better and I wish I was a better advocate for him because I can never be good enough.
I wish I could be free of the fear - of worrying that I am not making the grade, that I am not the person my dear DS needs to support him. I am just a middling kind of person and I am so fearful of everyone. That fear just needs to go, I wish it would but it is welded to my soul.
Chosenbyyou · 28/10/2018 05:50
I have much respect for you. Think you are doing amazingly well in such a tough situation.
There was a thread on here about having/not having a career with a child with additional needs - you are amazing!
I struggle with feeling like I’m doing a bad job at work. I have two little ones (3 and 1) and whist not having the needs of your DS I am drained my the no sleep/rest and I have that niggling voice in my head that I’m bad at my job. I’m not. I’m good at my job even with no sleep but it’s hard to remember that.
Someone said that 20 something’s are full of confidence at work (I was!) they think they are amazing but as they age their ability increases but their confidence wains (that’s me!).
I try to be honest about my weekends (I’m on my own a lot with two babies and I struggle) but I often feel like people just want the stock answer of ‘good’.
You are a strong lady, please don’t think negatively about yourself xx
UnRavellingFast · 28/10/2018 21:21
Thinking of you OP. mine are both teens and have faced some psychological difficulties so although I don’t face the same level of stress and challenge as you by any means, I totally understand how it can reduce one to an almost zombie like state. However I am sure you perform much better than you think you do even when under par. Please do tell the gp the depth of the issues you are facing so they can help you. You’re doing so well. I’m full of admiration and your lovely ds is lucky to have such a brilliant mum.
Livingtothefull · 28/10/2018 22:59
Thank you so much. I will try hard not to be negative about myself but tbh it has been really hard this weekend not to feel bad about myself. I have been snappy & difficult even with DS - I apologised to him later but can't unsay some of the things I have said.
TBH I have been upset because a friend of DH said he wanted to come over today....just texted him to say he might come over. I have been really stressed, I felt I just couldn't cope with visitors....felt tense all day actually. So sat here feeling all day feeling tense, waiting for the knock at the door which heralded my needing to pretend everything is fine, that we have no particular worries.
It is really frightening how quickly one's mind can break down, just how fragile it all is. I have felt n the very edge & although I haven't had a breakdown or lost my sanity I have understood very clearly how someone can. I just feel it is a very rough and brutal world and it can very quickly and obliviously consume and destroy people. I hope I come out of all of this a better person; at the moment I hardly feel like any kind of person at all. I am an inferior, at a lower level of being. I feel that I am in danger of breaking down and if I succumb, my family will have lost a cash generator cum domestic appliance and that will be regrettable, that's all. Because I am not much of a person, there is very little of me left.
I hope the doctor can help me (as much as this pathetic scraping together of sensitivity and guilt can be described as a 'me') with all this later this week but tbh I am sceptical. What do I say given that I barely exist? 'My brain wants to explode.....I am a deeply inferior human being....I am in no way equal to the tasks that are my lot in life. Make me a better person and help me'. I can see the doctor shying away from all of that as a hopeless case.
UnRavellingFast · 29/10/2018 19:17
No the doctor will definitely not shy away in any way from such desperately and genuinely needed request for help. They will be very concerned for you. In fact if you say the very thing you outlined above it would illustrate how deep your feeling of desperation is. I think writing what you have said above along with a summary of your son’s situation would make it easier for you to explain at the gp’s perhaps. You could say, I can’t talk about this without breaking down so I’ve written it down, do you mind? It will be a big help for them to see how you need help and maybe even get you some respite. Certainly anti depressants are not the actual answer but meds may get you to a place where you can feel better and see more clearly. You are a person, a great and valuable person, not a cog. Take care. X
Livingtothefull · 30/10/2018 10:17
Thank you so much.
Well I went to the GP this morning & given her a precis of what I have talked about here as you suggestedUnRavelling and she was very responsive, I have got a prescription for anti depressants so will get on with those. They will take a while to kick in though....so back to the doctor in a couple of weeks to see how I am doing & maybe increase the dose.
I have also been referred to for specialist help though that could take months. I could have got signed off sick for a while but that isn't really an option for me because I am still within probation at work - but that is always there if I do need it, better to fail at work than fail with the care of my DS.
A bit of good news....the school meeting isn't till later in the week so will need to take another half day to attend but at least it isn't today. Today I really do get to relax which I think I desperately need.
April....thanks for the kind words & the flowers.
Livingtothefull · 30/10/2018 13:59
My afternoon didn't pan out quite the way I hoped. I had a phone call from a furious, seriously stressed DH....apparently the school have broken DS wheelchair so it can't be used at all. The wheelchair got knocked over - again though we don't have the whole story. It is a brand new wheelchair, built specially for him and we have had it just a couple of months. It cost over £3k of our money (though family helped us with this)
So now I have a stressed DH driving down the motorway, left his extremely busy job having made apologies to his boss, to collect the chair from school and take it to the wheelchair company we bought it from, in the hopes they can fix it & it is covered by guarantee. I didn't know about any of this so there is not a lot I can do except try to calm him when he eventually does get home.
In the meantime, DS doesn't have a wheelchair at all as the school doesn't have a spare one. As a wheelchair is DS legs, this is to say the least unfortunate. You would think they would have a contingency plan for this kind of thing? Oh I forgot: 'Ring the parents' - that's their contingency plan.
NationalShiteDay · 30/10/2018 14:14
Oh love, that's awful
I'm reading this with my employer hat on and i would encourage you to speak to your boss, when you feel able to, about the stress you're under. There are lots of things that can be done to support you and your family (flexibility, shared understanding of how to manage work/life balance in times of extreme stress for example).
I've managed many people over the years who are juggling all sorts of very complex caring arrangements. They're good people (I know they're good, I wouldn't have hired them otherwise), I don't want to lose them, I want to support them so they can thrive at work (and at home).
flapjackfairy · 30/10/2018 14:18
Oh Lord. It never rains but it pours.
As regards the wheelchair. Hire one. Not too expensive and will solve an immediate problem. Also red cross lend them out. Unless your son needs a special moulded seat that is !
We have 2 children in chairs and an equipment failure is a major drama I know.
Well done on getting gp to help. Hope the medication helps soon x
Livingtothefull · 31/10/2018 19:32
Thanks all. Well we got an interim chair sorted & the wheelchair service provider say they can fix it. So...disaster averted for now.
Started on my meds but the GP said it can take a couple of weeks before I start to feel better, I may even feel a little worse initially so here goes....
Livingtothefull · 04/11/2018 21:51
I'm good thank you Unravelling. DS has been demanding, knows just how to push my buttons.....got shouty which I feel guilty about.
I am steeling myself now for another week at work. I will find out this week whether I have this job for the next 6 months or not, it is always possible I will be out on my ear. Just hoping it won't come to that, rejection doesn't seem to get any better with age or experience. I am trying to rise above it, it seems ridiculous and undignified to be so guilt-ridden and feel so unworthy.
I wish I were not forever side-tracked by my inadequate self esteem, I want to feel equal to everything that is in front of me.
UnRavellingFast · 04/11/2018 22:12
Yes self esteem issues are bastards! Try and hang on to the fact that what you are doing could not be done anything like as well by most people - therefore you are a very admirable and brilliant mum and worker. That is very evident even to me who doesn’t know you, so try not to let the inner voices get you down. Good luck next week. X
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