How do you insulate yourself from despair?

[Livingtothefull]

My DS (15) has severe and complex disabilities and learning difficulties, he is my only DC. I find it hard to deal with because nobody wants their DC to be more disadvantaged in life than they themselves are.

A couple of days ago I was out & about with DS and something happened to trigger a meltdown/tantrum. DS screamed at me that I was a 'f---ing bitch' and bit me on the arm a couple of times….really tried to dig his teeth in at my wrist, where the arteries are - although he has learning difficulties he is not daft you see, he knows what is likely to do the most damage.

I managed to restrain him but in the process of getting him off my wrist he tumbled out of the wheelchair and onto the pavement. The wheel came off the wheelchair, I was worried that it was irreparably damaged. My first thought: 'How am I going to get him home if the wheelchair is broken?'. Another thought : 'What if he hurts a member of the public?'. He was out of my control.

DS lay on the pavement, screamed at me, punched and and kicked me and passers by, and tried to bite me again. Then he tried to break a shop window by punching it and bashed his head against the pavement in a frenzy. I tried to stop him damaging himself this way & he bit me again, I have to say that bites are very painful.

At this point a little crowd had gathered, thought that this was all highly amusing & laughed at DS and me.

Some other people intervened & sent the 'little crowd' packing. There were 4 or 5 people who helped (both passers by & people from nearby businesses), they were all absolutely wonderful, lovely people. They helped to restrain DS, put a cushion under his head to stop him hurting himself, fixed the wheelchair, hailed a taxi & helped me put DS in so I could get him home.

The incident took a toll on me though, I was exhausted after & am covered in cuts and bruises. I have a demanding full time job, have to go back to it after the bank holiday and dread being asked about what my weekend was like/what I got up to etc. My family are lovely but they can't understand what it's like….that's not their fault. I tell them about DS, that he lashes out (like many regular teenagers do after all) because he can't express himself any other way and is so physically restricted that not wonder he lashes out. They are just like 'That's a shame'. It's not their fault; there is literally nothing to say about it, nothing I can say about the hurt & feel and no words of wisdom they can ever say to comfort me.

Nothing to be said or done to 'nail' and remove the emotional pain and that's nobody's fault. My experiences are so off the wall, it is very isolating. I know that I will have a repeat of this incident and I am fairly sure that one day, DS will really hurt me. He is getting bigger and harder to handle.

I am sitting up this evening, pondering how I keep going for everyone's sake and ensure that I don't give up or despair. The way that I deal with it is to keep some critical distance between me and my emotional upsets; to be a 'doer' a thing that simply does what has to be done. I live in the zone of 'not despairing just doing' and it works for me most of the time, I have found this strategy works OK but it may not be the best one, has anyone any ideas about what could work?

Just wanted to send a big virtual hug. Agree that you need increased support from somewhere.

Reading this I find myself wondering if you can take further steps towards where you see yourselves and your son in 4-6 years' time. I am imagining (and this indeed may be part fantasy in today's world, but we can still hope!) - identify a residential setting that would be appropriate for him at the age of 19-20, and arrange that he starts spending time there now. Respite time, or weekday school nights, or whatever it is that would allow your life to switch from coping with your son, to having meaningful time with him, and being able to switch off dealing with his problems long enough to handle outside work effectively. A longer transition period would surely be a positive especially starting while school is still part of the picture; and give you more space to change if the first place you try turns out not to be the right one. Most of all though you need to know that there is someone else who can deal with your son when it is too much for you on your own. I believe that is a common problem with disabled teenagers, probably boys even more than girls.

Very best wishes for a restful fortnight and fresh useful ideas coming out of the break for you.

You def sound like you need time off work sick. You are being investigated for the fits and your gp may well need to sign you off for stress. Speak to your gp. Then work can get cover in and sort out what needs doing there.

You are not superwoman!!

Regarding your ds. How much independence does he have? Is there a way that he can make some life choices and get some independence from you and dh? In terms of his emotional development. Are there any groups he could go to with a carer out and about where he could socialise with peers? What would he like to do regarding college?

Sorry - realised after I posted you have been signed off for 2 weeks!!

Hmm. You tried to arrange a meet up with your sister, but it seems she and the rest of the family have changed this to something completely different, and told you what would be happening. No doubt with the best of intentions, but (and I may be projecting here) that sounds rather full on and possibly a bit much for someone who is signed off with stress.

Thanks all for posting.

Yes that's pretty much it Silvery, what was a meet & catch up for 3 of us has turned into a full on family gathering & tbh I am not looking forward to it….not that I don't love them all & want to see them just not like this, right now. I didn't even arrange anything…this all stems from me contacting DSis to say hallo.

It is not their fault that they just can't understand what it is like and of course they have problems of their own; but these days I feel that there is just nothing to talk about. My situation will be the 'elephant in the room'; will have to find something else to talk about with them.

This is how things are often done in my family….they arrange something and then contact me to invite me along when it is a fait accompli. I don't think I can get out of this now it is organised.

To be fair though, if they waited for me to organise anything they would wait till domesday. Sometimes I feel I just don't have the energy for it all.
I don't know if they enjoy seeing DS or if it is too stressful for them; however DS does look forward to seeing them & seems to enjoy family get togethers.

We do get some respite btw though it is never enough….and are planning for DS future. And yes I want to be assured that DS care needs are covered so that I can just enjoy being with him; as we won't be able to do this forever.

You did try to organise something, though. But not the event you've ended up with.

Although some might suggest you setting your boundaries with the family by saying it's a lovely idea but it's too much for you at the moment, doing that might be just as stressful as going along to the get-together.

Apparently a family member called late last night in a bit of a flap, wanting to know what had been organised. I was asleep when they called & DH had to leave 1st thing in the morning before I was awake so was only just able to tell me.

So apparently everyone is looking to me to organise/book table etc. I feel like calling back and saying 'just tell me where you will be meeting & I will turn up, I don't care where it is but I don't want to organise it all either'. It's just a bloody restaurant lunch, I don't care where I go. Yes I think trying to duck out would be as stressful as going along.

I know IABU…it's like they can't win whether they organise everything beforehand or leave it all to me. I just want DS & by extension me, to be at the centre of plans not at the periphery; want him to be one of the first priorities to be considered rather than a tolerated add-on.

You Are Not REPEAT NOT Being Unreasonable.

What would happen if you did call back and say that?

I honestly think you NEED to do exactly that. Or just cancel it!

They have no concept of how your feeling. This would be a good time to explain to them.

We will probably look for a residential arrangement because I don't think it is in his long term interest to remain with us

This sounds like a great idea ^^

You have done amazingly so far, but this cannot continue if you are getting hurt.

Your work colleagues think you had a fit. They won't think any less of you for that.

Hope all went ok today Living.

imo you need a year off. At least.

You are under extraordinary stress. Your body has sent a very clear warning signal - please listen to it. What good would you be to anyone if you let yourself break? You are cracking and breaking. You have to do something.

I have to agree with a pp that you aren't superwoman. Yet you seem to think you are! Where has this idea come from? I hesitate to say this but you seem to have an extremely heightened sense of responsibility for one and all. Except yourself.

Have you had any counselling? Please don't say you're not the sort - no-one is 'the sort'; everyone is 'the sort'.

I'm sorry if I sound blunt. I'm seriously alarmed you insist on driving yourself into the ground; insist on keeping going. When your body AND your mind are clearly sounding the klaxon. Please listen!

Thank you for posting. It went OK with my family at the weekend; I confided with Dsis about what had happened after the rest of the family left (the rest of them don't know), she was supportive though of course none of us can change the reality of what is on our plate.

I will do what I can Springy to give myself a break, I know that everyone has their breaking point. I am not Superwoman but I think of myself as a pretty strong person. I have to deal with reality as I find it though….I feel that I just HAVE to be strong enough to deal with what I have on my plate, it is my reality & I have to be equal to it.

So I don't feel that it is me, but my circumstances, insisting on keeping going. I also have to pay the mortgage; I am actually the higher earner. But I accept I may not be approaching this in the right way and that there is another way which might be less demanding of me but ensuring I get done what needs to be done. I just wish I knew what it was.

Just as an example….the GP said I needed to use my sick leave to get some rest, but the 'get lots of rest' thing doesn't pan out the way it should despite my best intentions. Last night DS refused to sleep. When he doesn't want to sleep nobody else in the house gets to sleep. He was trying to climb downstairs to look at his iPad (dangerous for him to do) and play it at full volume as he always does (would keep us & neighbours awake if he did this, plus it isn't safe for him to be downstairs alone). He refuses to have the iPad upstairs or at low volume, and won't wear earphones. It is all his way or the highway.

DH tried unsuccessfully for hours to coax him to bed & sleep, in the end he had had enough and said I would have to take over. It would be easy to criticise him for waking me to deal with DS but I could tell he was desperate, he was breaking down….and he had to leave at 6am for work while at least I can catch up on rest today. DH also has serious health problems of his own and is on ADs, so we just have to take the strain off each other when needed & work as a team.

DS didn't sleep at all last night, just shouted & demanded his iPad, shoving/elbowing me…went berserk when the milkman came (at 3am). So DH & I have had very little sleep. DH was so tired & stressed he was throwing up this morning.

How could we have handled all of this better?

I am so sorry for everything you are going through - it sounds unimaginably tough. I am not surprised you are under strain. You have been SO strong, but I think what you have on would stress anyone out.

Is there any way you can put your DS into residential care for part or all of the week? Sometimes it's having quality time together that really matters, and this might give you and your husband some respite so that you can be more able to sustain work and to give your DS the best of you, when you're not knackered and sick. Plus, your health and physical wellbeing matter. I know he doesn't "mean" to harm you or understand what he is doing, but that does not mean that you have to endure physical beatings. If you are not sound and well, you cannot take care of anyone else.

I am sorry to read this, OP. I agree with PP - your DS' needs can no longer be met by his parents without it taking an intolerable toll on you. You need to investigate residential care for your DS. You will all be happier because he will have friends of his own age.

I also agree with the last two posts, and am reminded of a wise friend once telling me that it's much better to get a resolution in place while you're still fit enough to guide and influence matters, rather than wait until there's a complete breakdown which means things have to be done on a "crisis basis" if that makes sense?

From experience I really do empathize with what you're describing, but with both you and DH now being made ill, I honestly wonder how long you can go on with this without changes having to be made

We are getting some respite already though could do with more….I just want to have some of the burden of his personal care taken away so that I can just enjoy being with him. I can't deal with many repeats of last night but it is all dictated by circumstances i.e. 'you can't deal with this but you are going to anyway'. If things carry on as they are I know I am going to get ill or really get hurt.

We are at an age now when many of our contemporaries are beginning to simplify/downsize their lives, e.g. children are growing up so less dependent, reducing working hours, living space. No immediate prospect of any of this for us. Yes we have to put a solution in pace but it is going to take some time to plan & implement it.

Nothing wrong with taking some time to plan ahead properly, Living - in fact that's one of the things I meant about doing it now while you're able to, rather than it having things happen under even worse circumstances

Can I just mention, though, that you're unlikely to get much more help by simply saying you're finding things difficult; IME, as long as you show willingness to carry on, that's exactly what you'll be left to do. Obviously you know your own situation best, but in order to get things moving, you might find you actually have to say at some point that it's simply not possible for him to live with you any longer

As I say, I've unfortunately been there, so feel free to PM me if I can be of any help at all ...

I have nothing useful to add but you have my utmost admiration and best wishes. Your boy is extraordinarily fortunate to have you. And you are not letting anyone down, society is letting you down by failing to support you.

Residential care, surely? With good, professional, experienced staff offering 24/7 cover.

Or two broken parents who won't make it to 50. Then he'd be in God knows what residential care with noone to watch out for him.

springy is right - if you don't look after yourselves, what is going to happen?

I want to tell you about my grandma, though I want to say at the outset her situation is VERY different from yours, because you're not even being offered help while she turned down lots of offers. She nursed my grandfather through his last illness at the age of 86. She insisted on doing most of the work herself, despite their being help on offer. It sounds very loving and noble, but the reality was anything but. She was so tired she could barely speak to him, and when she did, it was snappy and rude. She was emotionally sad and overwhelmed, which also brought him down. She couldn't really manage physically either, which meant that he got less stimulation and exercise than was ideal while he could still get out and about. The whole experience, for both of them, would have been far more joyful and life-affirming had she accepted some help with the basics, including some residential care, and been able to spend quality time with him doing the things they loved to do.

Now, I appreciate that you aren't being offered support and you have to go out and find it which is exhausting (and I am ashamed that as a society we don't look after carers better). But the one thing that is shared between this story and yours is the potential threat of burnout, and its effects on your ability to give your loved one the care they want and need. It is NOT - emphatically NOT - selfish for you to look after yourself and to put all this on a more sustainable foundation for the future. I know that when things are busy, planning for the future is often the one thing that gets left - but this is actually the time when it is MOST important to make time for it, even if that means making some tough decisions for the short term.

for you. I really feel for your situation and you sound exhausted.

Our plan is to have DS stay at his school until he is 19 then arrange residential care for him from then. What ever set up we find we need to be able to ensure that it meets his needs & that he is comfortably settled and happy.

It isn't in his interest to be with us indefinitely, and we won't be able to do it anyway. But it looks as though we will have a struggle on our hands to make this happen and we will have to be upfront about the fact we can't care for him ourselves going forward.

Thank you so much for sharing your grandma's story shovetheholly and yes it is better to hand the personal care to those best able to provide it so that family can just enjoy being with the loved one. I do find I sometimes get snappier with DS & he knows just how to wind me up. I don't feel good about this but the strain does get to me.

Strain? Understatement award!

4 years of this? I don't think you (both) have 4 years in you. Finite human beings, after all.

I appreciate I am very probably mightily pissing you off. I also realise you wouldn't listen to even your GP. I really hope you don't both crash and burn but it really is looking likely.

I'm sorry you're having such a rotten time. I don't know that I have much to add that others haven't said, and I hope you do figure out a way to get some proper rest for yourself and soon. But you mentioned about the volume on the ipad at night. My DS1 also has severe LDs and 'challenging behaviour' and likes to play on the ipad at night and will turn the volume up really loud on the speakers and won't wear headphones. I found an app called 'volume sanity' that allows you to set a maximum limit on the volume and it's protected by a passcode so your child can't alter it. I found DS1 got cross with it the first time after I installed it, then accepted it, and it's meant that when he's awake at night he can play with the ipad without disturbing the rest of us. Just a tiny thing, but maybe it will help a bit.

volumesanity.com/

Hi, thanks for the link philosophicmum, am following up on that. It is better than battling DS with threats to take it away. He is recently getting slightly better at doing it when asked though (probably because have followed through with threats several times so he knows he won't get away with it!)

One thing I have accepted springy is that I can't carry on like this & things will have to change. To be clear I am listening to my GP and will make changes now, it won't be 'business as usual' for the next 4 years.. I know I need to stay well for mine and everyone's sake (especially DS) and am actively trying to safeguard/improve my health and get support.

But there are some things we can control & others we can't. The reality is that the help available is limited so we have to pay for any extra; in order to do this we need to work in order to afford it (& also to have a life, pay the mortgage etc). And I do actually want to work but need to have the work life balance right and I don't think it is too much to ask that the work I do is rewarding also.

I am back at work now as of mid last week, and it seems that there have been complaints about me; not my work as such but the fact I apparently haven't been communicating with colleagues enough…..my manager tells me that some people have mentioned that they prefer dealing with other team members than me. Some of the people who have said this are those whom I have gone out of my way to help; so - nice one. I know it's a job though & I have to just suck it up.

I have self esteem issues anyway which all this doesn't help. So my question for today is: have any of you ever successfully maintained or bolstered your self esteem in the absence of anything much in the way of positive feedback from pretty much anyone? Personally I have always found this difficult, have always felt the need for approval & unable to 'manufacture self esteem in a vacuum.