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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be disheartened

6 replies

Livingtothefull · 17/09/2013 20:04

DC (12) is severely disabled, confined to a wheelchair & has learning difficulties, has never walked independently and never will. He had to have major surgery...recovered from this but never got back his full mobility. We have just been told he needs further surgery.

DH has hurt his back (from lifting DS) & is in a lot of pain....has also had some upsetting family issues recently. He takes a lot of his upset out on me as there is nobody else.

As DS is so dependent we had to pay for specialist care over the summer holidays, and an adventure holiday for DS with other special needs children. The rest of the time we took time off work to care for DS. So we have not had a family holiday together - haven't had one for years as we can't afford it in terms of time or money.

I had to leave my job in a hurry early this year as was bullied at work....found a temporary assignment which will end later this year. DH & I both need to work to cover mortgage etc, I am scared I won't find another job.

I have worked hard to get a professional qualification; just one module to go and I will be finished. But I am losing heart again and feel like giving up. Am trying unsuccessfully to get something more long term.

I sometimes get panic attacks which literally take my breath away...feel nauseous, have a metallic taste in my mouth, my train of thought is lost, I lose short term memory. I went to the GP who prescribed anti depressants and referred for counselling...I am still waiting. Paying for it myself is not an option when I could be out of work in a few weeks.

I think I am coping - i have DS so it is not an option not to cope. But it seems all wrong that life is so hard, I want everything else (work, family, studies etc) to just take care of itself so I can focus on DS. DS is so happy in his nature despite everything and despite all the (further) pain he is going to have to go through he loves life. He deserves so much more from me. I so wish that things would get easier

OP posts:
VoldemortsNipple · 17/09/2013 20:16

I'm sorry, I can't really offer any good advice but didn't want to read and run. Have youtried posting this on the SN boards. II'm sure you would get some good advice and support there. Good luck and I hope somebody more helpful will be along soon.

Runningchick123 · 17/09/2013 20:20

Do you have any carer support groups locally? Being able to meet up with other parents who are caring for disabled children might be quite therapeutic whilst you are waiting for the counselling to come through.
With regards to finances - are you claiming the correct level of DLA for your child and can you claim carers allowance whilst you are out of work. Carers allowance is only £58 per week, but it goes some way towards recognising your role as a carer.

ChampagneTastes · 17/09/2013 20:20

I wish I could offer some helpful advice. All I can think is that your DS is tremendously lucky to have you. I wonder if you could get some respite care, just so that you can have a bit of a rest and maybe focus on job-hunting?

Runningchick123 · 17/09/2013 20:22

BTW - You are not being unreasonable. Caring for a disabled child is physically and emotionally demanding and appropriate care is so shockingly expensive and sometimes not fit for purpose.

Guitargirl · 17/09/2013 20:24

I'm sorry, that all sounds extremely difficult and no wonder you are finding it hard with everything that life has given you to cope with.

Are you getting all the help - financial and practical - that you are entitled to?

Livingtothefull · 17/09/2013 21:30

Thanks all. I have posted on & consulted needs board for practical advice. Sometimes it gets too much & i can't help but offload, don't want to risk hurting or burdening anyone. I think we claim all entitlements in terms of benefits, respite etc. Caring for DS gets harder though as he gets bigger, sometimes he gets frustrated and lashes out.

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