I feel demoralised and overwhelmed.....agai n

(128 Posts)
Livingtothefull Fri 25-Oct-13 12:25:35

I have posted previously under another name re my situation. My only DC (12y) is severely disabled. We have had a few upsets with DH family which are now contained if not resolved. I have suffered quite badly with depression/low self esteem issues the past year or two but am coming through this & had treatment. I also experienced bullying at work & had to leave in a hurry so found a contract role which lasts till next month. Things have lately been a little more settled.

Now, DS requires further major surgery which is scheduled at the very end of the work contract. So I won't be available for work while he convalesces though, on the plus side, at least I will be free to take care of him. But I NEED to work to keep the roof over our heads, am terrified I won't find something else. DC will deserve a wonderful Xmas and how will we pay for it?

I am studying for a PG qualification which is nearly completed...was scheduled to end January (already deferred through mitigation due to DC issues - no further deferment possible). I have to do some research within the next couple of weeks, how will I do this with all that is going on with DC? I am so worried about my poor boy.

My health has been pretty poor & I have piled on weight, have been addressing this lately by joining a gym, running when I can, doing fitness dvds at home, eating better etc. How will I do this while DC is convalescing? I know I will comfort eat and won't be able to leave the house or afford the gym. I also feel horribly guilty for working on myself like this when DC will never be able to even walk.

I don't know why I am posting here really...these issues can't be taken away but I need to somehow get though this and manage my life. I need to fight this feeling of fatalism....feeling that life/the universe etc has it in for me and will ensure that I don't succeed, that pressure will be piled onto my little family until we all break, and that I will remain on a step lower than everyone else.

Livingtothefull Mon 18-Nov-13 21:19:43

I think that I am too hard on myself as NannyOgg has said upthread, that expecting this much is actually counterproductive. When I feel that whatever I do is not good enough, it makes me want to not bother at all....and I can't afford to feel that way. I need to be effective and I also want to feel reasonably OK about my life & what I am achieving, which in turn helps me be more effective.

How can I be kind to myself when I lead a life which makes no allowances for kindness...which makes a set of demands and does not care how I might feel about them? As I have tried to say previously, success is in the doing, in positive achievement not just in 'being', 'existing', 'inspiring', 'thinking good thoughts', 'meaning well'.

I need to care for my DS. I NEED to find a job to keep the roof over our heads. I need to study as if I fail I know I will regret it for ever. I need the wider family/friends circle to know I care. And I need to do it all now....prioritising doesn't come into it, I never get this time back.

Livingtothefull Tue 19-Nov-13 09:20:40

Well I had DS ready in his school uniform and school bag at the bottom of our road (a minibus collects him to take him to his special school - our road is too narrow for it to drive all the way up to our house) at usual pickup time.

Got a call from DH to say he had received a message from the bus driver/escort that they would be late as the child who was picked up previously had been 'playing up' and it had taken some time to persuade him into the bus, hence the lateness.

I am afraid I just lost it and ended up shouting down the phone at DH: Why could the other DC's parents not damn well make sure she was on the bus in time? Why were they such wimps unable to handle their own DC? They can't put up with their DC protesting if they laid down the law and said 'you are getting on the bus right now and no more nonsense'. I managed to lay down the law with my DS and get him ready on time, despite him screaming abuse at me practically non stop until I felt sick. I still got him ready on time for the bus & as a result had DC standing around in the cold - just after having surgery - because of this? If the bus had been held up due to traffic it would be different/unavoidable.

I have been up since before 6am to get DC ready for school. This involved unstrapping his gaiters to do his painful stretches whilst listening to him screaming in pain and shouting 'Fuck you' at me, doing up the gaiters again ( quite tricky and need to take care with his scars/stitches), balancing him at the edge of his bed to do a pee and cleaning him before putting a nappy on, giving him his medicine, cooking and spoon feeding him his breakfast, then dressing him ( manoeuvring his trousers over gaiters and plaster cast - at the best of times it is challenging to get a pair of trousers onto a child who can't stand up.)

I still managed to get DC ready in time though. Why? Because I didn't want to risk inconvencing the other DC on the bus or their parents, or the bus driver & escort, by being late.

AIB totally U at fuming about this? I am really scared at how angry I am getting....have no idea what challenges the other DC parents are having to face so I might be totally unfair.

bibliomania Tue 19-Nov-13 09:50:36

That sounds like a nightmare morning, and the thought of it being day after day like that - oh, you poor thing.

Do you think you might be angry at those other parents because they are a safe target? You have a lot of anger inside, of course you do, at the unfairness of everything - is there any safe place to express it? Can you go outside and smash up some old crockery (buy some super-cheap stuff in a charity shop if you need to) or the good old punching a pillow or something? Or just go someplace where you can scream as loudly as you want?

Livingtothefull Tue 19-Nov-13 10:12:06

Thanks bibliomania, yes I think you have nailed it and I have a lot of pent up anger which has nowhere to go. DH called back later all worried as he thought I was angry at him as I had been shouting.....I assured him I wasn't as it was not his fault but that I needed to know he understood where I was coming from and he said he did.

I didn't say anything or complain about lateness, to the bus driver/escort, it wasn't their fault, they were inconvenienced too & they are not paid to put up with crap from parents. It would upset the children anyway, if I had made a fuss.

I have no idea what the parents of the other DC are facing, and no business making judgments. Every time I see DS wounded legs with the surgical sutures still sticking out of them I get upset. I can't even comfort him because at the moment he hates me.

So, I have a whole big bucketload of emotional upset and NOWHERE to offload it/NOBODY who is to blame.

bibliomania Tue 19-Nov-13 10:27:36

Poor consolation, but at least you're a "safe space" for your DS's anger. Honestly, everybody needs that so you've got to find one for yourself. I'm not trying to talk you out of your anger at the other parents. You're allowed to be angry. You should be - you need to be. You need to hit something and scream.

cq Tue 19-Nov-13 10:45:29

I've just read this entire thread and am in awe of you, living.

As someone else said upthread, the love you have for your DS just shines through even your darkest posts.

I have no helpful words or advice, but wanted you to know there are lurkers out here cheering you on.

I hope you get some precious time to yourself today while DS is at school.

Livingtothefull Tue 19-Nov-13 13:39:46

I try to express the anger when I can. I know that when I am hard on & berate myself, I turn the anger in on myself & that is not good.

I know I am not alone, most of us go through hard times. A couple of those kind enough to post have referred to their own special needs DC so I know we are far from alone. We are just trying to get through the hard times as best we can.

Yes I have tried to relax this morning....this afternoon I will try to find out about benefits entitlements as advised here, agree it seems possible I am entitled to more. Then I will contact my long-neglected course tutor.

Thanks so much cq for your kind words, your post helps more than I can ever explain.

Livingtothefull Tue 19-Nov-13 22:02:06

In desperate times there is comfort - and a source of great pride - in just getting on and doing what has to be done. Sometimes it seems that that is literally all there is, nothing else left to keep one sane.

Livingtothefull Wed 20-Nov-13 20:06:49

OK we received the following letter from the Disabled Children's Team re DS, re our request for support for his independence at home. Please let me know your thoughts:

'As you are aware (DS name) is on our waiting list for an assessment with regards to increasing his independence with toileting at home. I understand....that since we last saw DS at home (btw this was in 2008) his independence with toileting at school has greatly improved and it is hoped that with some equipment it will be possible to achieve the same success at home. At present we are operating at a 0.5 staffing and therefore it is still likely to be some time before DS can be seen with regards to this. (Maybe will be another 5 years before they can do this then).

The reason I am writing is because I received a phone call from DS school Occupational Health provider this week following his recent op as she wanted to discuss DS current personal care at home with regards to the advice that our team would give and further provision could be made.

(School OH name) advised me that at present, although you have ensuite level access shower facilities provided for DS, you are currently choosing not to use these and are currently carrying DS to your ground floor bathroom and lifting him in and out of the bath. This choice places both yourself and DS at risk of falls and severe/fatal injuries. Since provision has been made for DS to safely access wheelchair accessible washing & toileting facilities our advice would be that these facilities are used.

It is also noted that you are choosing not to use your through floor lift at present and are continuing to carry DS on the stairs. This places both yourselves and DS at serious risk of injury and possible fatality'.

Livingtothefull Wed 20-Nov-13 20:07:32

And here is the jist of DH's response to the above:'

'I have received a distressing and unpleasant letter sent by the Occupational therapist team in (regional authority).

It should have been anticipated that this would cause us immense distress. I am extremely disappointed that a professional should communicate without understanding the full facts.

We requested a chair with wheels, in order to allow easier access to the downstairs bathroom.....for easy toileting the down stairs is easier for the time being, whilst he requires from his surgery.

DS enjoys the bath and sometimes requests one. He has few enough pleasures in life, so we do not want to deny him this as an occasional alternative to his shower. We are extremely attentive as to his safety at all times; we are both conscientious parents who would never endanger DS. We have never ever had an accident or even near miss whilst involved in DS care; by any standard that is an excellent safety record.

With regards to the accusation that we do not use the lift, this is incorrect. It was agreed previously with OH professionals that he should be encouraged to access both and that if he prefers to shuffle upstairs (accompanied and supervised at all times) then that was acceptable. This is DS home and as far as possible he should be free to get around his own home by whatever means he sees fit, and as his parents we can and should be trusted to safeguard his well being as hitherto we have successfully done.

I would like clarification as to what exactly was said between these professionals as certain facts have been misinterpreted. It is impossible to carry DS upstairs especially post surgery; he is unable to shuffle upstairs at present so we use the lift. He cannot access either the bath or shower at present so he is sponge washed by us.

In summary, your letter accuses us of endangering DS. Given that we have just witnessed him go through a 6 hour operation and dealt with the painful aftermath, this accusation has caused us immense and wholly predictable distress. I can say catagorically that it is untrue as well as being highly offensive to us as his parents.

I note that DS has not been reviewed since 2008 - well over 5 years ago - during which time period he has had 3 operations.

I have been truly shocked by this letter and both Living and myself are very distressed by the blatant accusations of endangering DS. Will these officers please understand the consequences of their inappropriate remarks. We look forward to a redraft of the letter and a retraction of the accusations made'.

NothingMoreScaryThanAHairy Wed 20-Nov-13 20:29:11

Well done to your dh, sometimes the professionals do not think about the impact of their words. Especially if they are second hand and have had NO contact with you for over 5 years. It's laughable that they think they are qualified to comment.

Just rereading what you actually do for your ds in a day (even the small snapshot you post here, and I know that is only a small snapshot there is no way you should only be getting mobility element of DLA. I know I am banging on about it but to you have any support locally to fill the forms in? I only ask because even though I am an educated professional having an idea of how to say what I was saying made a huge difference and also describing the worst of days rather than what I hoped would be the best. If he is difficult and confrontational (understandably that should go in (it doubles the time to do anything ime). I do not want to teach you to suck eggs. But it is so hard to look at the screen and see all that you are dealing with and thinking even we get mid rate care, (different circs but still). And I wonder if the DLA and the carer's would take the pressure off you in the short term to allow you to regroup. I don't know where you are in the UK but I am sure there is a support group who should be able to help you.

Livingtothefull Wed 20-Nov-13 21:05:17

Thank you NothingMoreScary, I can assure you we are following up as you advised re DS & our entitlements. DS care needs are of course much more challenging than normal post op; but even at the best of times he needs a high level of support and as he grows it puts more demands on us. Yes there are some local agencies which have been very supportive so we are approaching them.

I find it ludicrous that this woman who wrote the letter ( who has not seen DS in years) feels qualified to comment; by her insinuation - or rather outright accusation - that we are not safeguarding DS. I am just so offended and feel patronised by her letter; as if we, unlike 'normal' parents, cannot be trusted to make judgments as to what is safe for DS in the home (as every parent does all the time).

When DS is well he is very good at climbing the stairs; I would like to see this woman stop him from doing it. If my back is turned for a second he is on his way up. I feel that any independent activity he is able to do should be encouraged. If he is in the bath or on the stairs we don't leave him for a moment.

bibliomania Thu 21-Nov-13 09:35:05

Well done to your DH! I can't believe they would give you so little help on the one hand, and scold you for doing it wrong on the other! Talk about an utter lack of self-awareness! That really rubs salt into the wound.

Of course you should be encourage DS is whatever independent activity he can undertake - it would be cruel to take that away from him.

Can't remember if it's been said previously, but have you been in contact with your MP? For me, admittedly in a totally different context, the involvement of my MP's office was the one thing that made a bureaucratic blockage suddenly disappear.

Livingtothefull Fri 22-Nov-13 11:02:41

Have had a response now......our concerns are being taken seriously & her boss is being involved.

Yes contacting our MP is a good idea bibliomania, we have done this in the past when we have felt the need. I will see what the outcome is now before deciding how to proceed with this.

I would like to see this woman tell me how to lift a struggling, screaming, uncooperative near-teenage boy with leg gaiters and a plaster cast into his wheelchair, as I had to do this morning, without 'endangering' him again.

bibliomania Fri 22-Nov-13 11:17:13

Good to hear that your concerns have been listened to. This woman should be trying to make things better for you, not worse.

That must be murder on your back. You're a strong woman, in so many ways, even if you don't always feel that yourself.

Livingtothefull Tue 10-Dec-13 00:45:38

I am sitting here again, far too late at night.

I don't want to talk too much about the weekend I have had. Suffice it to say that copious quantities of emotional distress were involved. On the side of DS, on the other hand, he has experienced outright physical pain.

I am desperate to hold it together and am begging for help. How do I remind myself that I am a human being as is DS and that we are entitled to expect life to be rewarding..even pleasant at times? Rather than sheer hellish suffering, day on day?

I am just tired of watching my DS suffer. If there is one thing guaranteed to make a DM feel that she is a bad mother, it is to watch her DS suffer and know that she can do nothing to help; what is more, knowing that she has advantages in life that he will never have.

She (i) grew up feeling socially awkward, thinking that feeling vaguely disliked by all those around her was the worst evil that could befall a human being; that it was her lot to feel inferior and that was just dreadful. That is before she had her DS and had years of watching him suffer and really knew how hellish life could be. Life is remorseless where some people are concerned; it really doesn't care how much those select people suffer. It singles out individuals like my DS; unilaterally decides 'I earmark you for extraordinary suffering' and accordingly piles it on.

I really wish I could lose the social awkwardness, the prevailing sense of inferiority now though; it is an additional burden I just don't need. I will never ever have peace of mind, but how I wish that I could operate from a position of strength and that self esteem could be mine.

Livingtothefull Tue 10-Dec-13 01:06:20

I just want to be emotionally strong with no chinks, a role model for my DS. I am tired of being openly sneered at.

I am still trying - failing - to get a job. I have until 7 jan to do my dissertation and I am not doing it. I am not even panicking,I am just like a rabbit in headlights even though I will not get a further extension. I am an all round failure at present and so feel all the associated guilt and grief.

Livingtothefull Tue 10-Dec-13 01:31:37

How do I keep going and why should I stay sane? I will NEVER harm DS but all the same I am scared to ask for help.

There are several things that rank as the worst in the world; here is one of them. When your DC is in pain and you know that you can do nothing to help him, to alleviate his anguish, you end by being irritated by his cries. I know myself as a terrible, horrible person.

Livingtothefull Tue 10-Dec-13 01:45:34

I remember, when DS first arrived, some family members telling us 'he was given to you for a reason; he was meant to be with you'.

I don't know why they think that; on what basis do they think that we are exceptionally well equipped so as to ensure we can handle this? I note that we seldom hear from these family members and so are, largely, left to get on with this.

I do believe in God; but I wish that when he gave me DS to care for, he could have taken my self doubt away.

Reelife Tue 10-Dec-13 02:04:30

Hi Living.

Didn't want to read your posts and ignore. I too am awake when I should be asleep, but I only have the mundane stresses of life to deal with.

The middle of the night is the loneliest time, isn't it. The quiet emptiness seems to drag your mind to its low point.

I can't begin to imagine what you go through on a daily basis. I often think, when I see articles or watch tv, how amazing parents such as yourselves with real challenges are. You are totally entitled to be upset and rail against the "fairness" of life. You don't always have to put a brave face on, and the boards here are an amazing source of support. As a parent of two "NT" children (for want of a phrase) I feel I can express a negative opinion about myself or my parenting - I should imagine the pressure is intense if you feel that someone is criticising the care you are giving your lovely boy when they have no idea what you live with on a daily basis.

This is a bit of a ramble, and in certainly no way meant to be patronising, but remember in these lonely small hours of the night, that there is always someone who can listen to you. Xx

HawthornLantern Tue 10-Dec-13 02:17:02

Living I didn't want to read your posts and leave you unanswered. I read such a loving and articulate DM coping with unimaginable levels of stress and distress. I have no practical experience to draw on but wanted to know someone read your posts and was thinking of you.

Scarletohello Tue 10-Dec-13 02:35:41

Hi I've just read your thread and its had me in tears at times. Especially when you said you were a 'failure as a woman'. You are incredible! The love you have for your son, the care, the strength you have, is impressive.

I feel very humbled reading about your life. The last year I've been looking after my dad who has dementia and is blind and I've found it frustrating, unrewarding and lonely. One night I was so desperate I went online to try and find an organisation that supported carers. I found one but it wasn't till I was on the phone that I realised it was in Wigan! But the woman was lovely and just let me rant and sob...

So I was thinking you really need some emotional suport, have you contacted Carers UK? I know they have a helpline and I am sure they could listen to you as we'll as give you any advice on benefits. You really need an outlet for your feelings, I know there's MN but because of the amount you post and what you're dealing with I really think you need more. You are an amazing woman and you need to take care of you!

Livingtothefull Tue 10-Dec-13 20:16:37

Thanks so much again for all your messages. Scarlethello: I am sorry what you are going through with your father and yes it is incredibly isolating and lonely caring for a loved one, when the condition is permanent/ongoing. I hope you have found the support you need and thank you for your kind words.

This evening we had a call from DS school as they are so concerned about his condition and state of mind. He is usually a happy, cheerful boy so it is heartbreaking to see the change in him. His carers at the school seem genuinely upset. A couple of the neighbours have noticed how he has changed for the worse.

We contacted the doctor again to arrange an appointment this week and try to get him some support. Receptionist: 'You can't have an appointment this week, we are fully booked. It will have to be next week'.

Us: 'no that will be too late, he needs to see the doctor this week'.

Receptionist: 'the only thing I can suggest is that you call in the morning and try to get an emergency appointment on the same day. There are no appointments this week'.

Us: 'Let me explain something to you. My DS has severe disabilities, he has had major surgery recently and there are complications arising out of that surgery. He needs to see the doctor this week and we need a firm appointment'.

Receptionist: 'I've already told you that we can't do one'.

At this point DH went absolutely ballistic at her and in the end, said she would arrange for the doctor to call us. Why couldn't she have suggested that at the outset? Why does all the pushing have to come from us? Why are we left feeling that nobody wants to support us?

I am so unhappy...we have hardly been bombarding the surgery demanding help ( partly because we know how unhelpful they are likely to be). All they have had to do so far is give me an (incorrect) phone number for the district nurse, and dole out a couple of painkillers prescriptions.

Livingtothefull Wed 11-Dec-13 13:13:56

OK I got a call from the doctor.....she will see him tomorrow evening.

I sound as though I am moaning about everyone, I don't mean to be like that. I think I can appreciate anyone who is trying to be supportive (even if they are actually unable to help) but find it upsetting when those whose job it is to assist us, seemingly couldn't care less.

I think I have more or less given up on the jobhunt this year....the interview I went rushing to yesterday morning, after a sleepless night with DS, went nowhere.....I got a call yesterday evening from the agent to tell me I was unsuccessful. So it didn't take them long to confirm that they hated me....what is the matter with me? I didn't want to tell DH and upset him further as yesterday was a bad enough day. He still doesn't know.

I felt really down & depressed about everything yesterday but I am trying to be more positive now.

So I think the rest of this year will consist of:

Continue to support DS first & foremost. Get a few hundred out of my savings account to pay for his wonderful Xmas;

No more active jobhunt (though respond to any job ops that agencies contact me about);

Focus on MA project and (somehow, by some miracle, get it done by the deadline 7 Jan).

Does this sound like a plan?

Livingtothefull Thu 12-Dec-13 21:59:01

Well we took DS to the GP & have also been in touch with his consultant who did his op....it seems his pain is due to stretching of the tendons in his legs affects the nerves which is known to often cause hypersensitivity & severe pain. My poor boy must have been in agony for weeks.....but at least now he has a prescription for the appropriate painkillers so we hope will be more comfortable soon.

The GP told us that following the argument with her, the receptionist has made a complaint about us which will be dropping through our letterbox very soon. So I will have to read it to see if it requires a response.

I wanted to work on my MA project but have just not done what I set out to achieve today....so feel a sense of failure. I just need to grit my teeth & somehow get through the next few weeks and out the other end. I am really really suffering at the moment & just want this all to be over....to wake up one day and realise the worst is over & we are in the midst of better times.

Here is where I want to be:

I want my DS to be over his op, out of pain & enjoying increased mobility & well being from the surgery. He has been miserable for so long now and this is not in his nature; bless him, by nature he is far & away the happiest person I know. I want my old DS back again;

I want to have a job that is reasonably rewarding and challenging;

I want to somehow knock these studies on the head, finish my MA and pass.

None of this is going to be any fun at all to achieve; but somehow (say by early next year) this is where I want things to be. So please, root for me or pray for me & DS.

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