To ask for advice & strategies to cope with my life better?

[Livingtothefull]

The following is my litany of problems:

My teenage DS has severe disabilities, both physical (wheelchair bound) and severe learning difficulties (he has a mental age of around 4) So DH and I are heavily preoccupied with his care, we have very little outside support except that which we pay for ourselves with Disability Living Allowance. With this support we fit his care around his attendance at special school and our full time jobs.

DS will be leaving school in the next few years so need to plan. We are in the process of applying for the new Personal Independence Payment (even the phraseology sets my teeth on edge - so now DS is supposed to 'aspire to independence' rather than merely 'living with disability'. It is a lengthy stressful process to reapply for what we thought was accepted to be a lifelong, life limiting condition. And I am desperately worried that at the end of it a reason may be found to withhold the benefit from him.

DH has found out that he is going to need fairly major surgery in the next few months. I am worried, not just about him, but about the logistics of caring for DS while DH is recovering.

This brings me to the specific question I have:

I am holding down a professional job in the meantime but I am getting worried about my ability to cope. Although the feedback I have received has all been positive and nobody has expressed concerns to me about the job I am doing. They are aware of my situation with DS and DH surgery and have been supportive, offered flexitime and to work from home etc.

But I can't get rid of this feeling that I am an 'imposter' and am not coping and it will only be a matter of time before I am found out. Every time I make a mistake I magnify it in my head, it doesn't help that I am exceptionally busy at the moment and so I am finding it hard to keep up, whenever somebody has to chase me for something I reproach myself, am paranoid that they are thinking that I am not doing a good job, are going to complain about me etc.

I have had bad experiences in workplaces in the past, and if I am honest I think I am traumatised by the issues we have had to deal with re DS. So these feelings are coloured by this - but I don't know how to get past them. I NEED to keep this job and for it to be a success. I am arranging to get counselling btw which may help; but this is taking a while to set up, & I need some strategies for dealing with this in the short term, can't go on like this!.

My question is: can anyone advise me on such strategies? Have some of you been in comparable situations in the past with multiple problems and stuff going on, and how did you keep a level head? How do I convince others (and myself) that I can cope and not let this fear get in my way? I need to find a way to turn off the fear spigot located in my head?

Sorry rather long & I hope all this makes sense!

[Ruralretreating]

Hi Living, I'm sorry you've been having a tough time again. Great advice from Polly there re work. Without meaning to be nosy or cause offence (my knowledge of disabilities is pretty limited) are you getting all the help you can/are entitled to with DS. Can your GP help at all? Being hurt on a regular basis sounds a lot to cope with. Sorry if that's unhelpful, it's not meant to be.

[OneWaySystemBlues]

Do you have any support from social services? You are entitled to a carer's assessment as well as an assessment of your son's needs. If you haven't already, you need to get through to the disabled children's team, or whatever it is called in your area.

What you are dealing with sounds incredibly difficult. My son has different difficulties, but adolescence made things 100 x worse and he got very challenging and aggressive. It took some fighting for but we did get social services support/direct payments to pay for some respite. It's even more important as they approach adulthood. There is only so much you can do and you're doing an incredibly hard job as carer, as WELL as challenging paid job which sounds like it would be hard enough without the stress of looking after a challenging teenager with a disability.

I hated having to ask for help, but I was worried that we wouldn't be able to cope and I was worried about what would happen if we weren't there. They only get bigger and stronger and there is a real possibility that you could get hurt. No matter how uncomfortable it might feel, you need to consider your safety in all this too. I think it is even more important as he's leaving school in the next few years.

[daisychain01]

The ridiculous thing is: I am good at what I do. I have a lot to offer the company I work for - in the medium to long term. But not right now.

These positive words shone out to me, why not try writing down 2-3 achievements and positive things you've done every day.

You'll surprise yourself how long the list is!

[Livingtothefull]

Thank you all. Yes we are trying to get all the help we are entitled to & I am really grateful for the help we do get. We do have to fight for everything like you say OneWay, we do have some respite but live in fear of it being taken away. DS respite carers (who have cared for him regularly for years) were called into a meeting arranged by the Council & told that there was 'reducing demand for respite care'; it was implied that the respite service might be discontinued.
There aren't any fewer SN children in our area so if there is reducing demand this is because the service is not communicated effectively to families (which it isn't). It is also classified under 'foster care services' which I feel is likely to put people off.

DS has funding for one to one care at school at the moment; we are worried that this might be taken away too.

I am worried also that if I admit that DS is hurting me, it may affect the options for him for residential care as an adult. TBH he doesn't hurt anyone else but me, not his schoolteachers (he behaves really well at school) not DH (who can restrain him) only me. That doesn't make me feel good.

I am trying to stay positive but it is really hard. Positivity is taking everything I have got.