OT---why does no-one understand???

SLACK ALICE

Silver Member
Sorry -gonna be long !
We all know its easter break for the kids,So Once again the owness falls on me to look after our disabled son- Now dont get me wrong ,I lov him to bits , but why is it always me ?
This was the argument I had with OH yesterday and sorry to say it still carrying on today- he just dont get it.
Yes I know he goes to work 5 days a week and brings home the money - I work 12 a week - cant work more
1, no hours at work
2, Have to be home for son
3, Not allowed to work more than 16 hours per week(carers allowance)
But It got to the point where he said ..I should find a job that pays the same amount of money he gets and then he would stop at home and look after son !!
but on the same token I will have to do all the ''Man'' things he does ??ie gardening, building,fixing things etc
afterall his money pays the mortgage!!
For all I care this place could burn down I dont care
He just doesnt get it.
I dont want to stay at home ,looking after son, changing him feeding him etc. I ve had to do it for 20+ years and it has always been me that has to do part time work and stay at home -not him.
Last week he has been coming home at 7.30 or later - I told him he better not do it this week I will kill him.
i dont go out - I would feel guilty leaving OH at home with son. But wot I want to know is why is it always me?
I phoned my sister and she says . That thousands of women do this - look after their kids- Yes I know but not for 20+ blooming years. so she dont get it either.
We have also lost sons respite - we are now allocated 13 nights per year and I need to save them for september. So we wont get a break till then. so it will be until then just the 3 of us day in and day out. Even then they cant garantee any respite- I live in hope
I am finding this is having an affect on my SW aswell Im STS or gaining cos i just dont give a dam anymore. This is all gonna fall apart -I can see it now.
Has anyone on here gone through this and made their OH understand?
sorry for going on but Im upset- I want a life :cry::cry::cry:
 
Im sorry hunni, no advice or words of wisdom just vitual hugs.xxxx
 
Sending you big hugs alice, you sound as though you are going through a frustrating time in your life which is understandable. My situation is similar to you in some ways but so different in others. If you ever want to talk just pm me. Hope you get things sorted with your oh xxx
 
I don't see how your husband only thinks you work 12 hours a week... being a carer, even to your own son, is a full time job and I bet even when you are at work for those 12 hours you are worrying and thinking about him and the things to need to be doing at home.

Everyone needs a break from time to time... a proper break. Your son isn't only your responsibility, he is your husbands too and I know it is easy for me to say but it is about time he stepped up took some!

Do you get any support or help from your GP... not for your son but I mean for you as his carer? Is there a support group near you at all?
 
Why don't you look into how much it would cost to pay for someone to look after your son privately, to come and clean your house, do your washing, shopping and cooking and then present a bill to your husband for half of it. Tell him that people get paid for everything that you do for 'the family' and on top of that you also work 12 hours a week. Ask him when your life is supposed to begin and when you're both going to handle everything 50/50 in fair manner.
Or arrange 1 or 2 evenings or a day at the weekend when your husband can look after your son, which can be your free time. You can go out if you want to, read a book in bed or have a long long stress busting soak in the bath without having to get up for your son every 10 mins or however often.
If your husband won't agree to this then he is being totally unreasonable and dumping all responsibility for your son on you. If this is the case then I'm afraid you need to get as stubborn as him. Wait for him to come home and just go out...tell him your going to the shops and take yourself to the cinema or a friends house.
 
can you not reappeal for respite care, I work in a sen school and i know tyhe parents who shout the loudest get more help regardless of whether they 'need' it or not. Don't feel selfish about doing it your entitled to it.
I can see why you are so frustrated, ur OH just doesnt seem to be getting it! role reversal would be a real opener for him if only it was possible
 
I'm a full time carer for my disabled son too. Soetimes it's overwhelming and soetimes it's bearable. It looks like it's a difficult time for you at the moment. I hope you feel better soon xx
 
Hey Hun, I just want to give you big hug. I understand what it is like to have a selfish other half although I don't have the same responsibilty as you so I can only imagine how hard it is. You deserve a medal you really do. I wouldn't be able to cope at all. Try what Tracey113 has suggested and reappeal. It may not work but then again it might and it will be worthwhile. If you ever need anyone to talk to just mesg me.
I hope you feel better soon and have the strenght to carry on with sw.

xoxo
 
Why don't you look into how much it would cost to pay for someone to look after your son privately, to come and clean your house, do your washing, shopping and cooking and then present a bill to your husband for half of it. Tell him that people get paid for everything that you do for 'the family' and on top of that you also work 12 hours a week.

I think this is a fantastic idea
 
I also have a disabled son and know how hard things can get. Have you asked for a carer's assessment? You are legally entitled to one. You could have Direct Payments so that that you can employ a carer for your son. Maybe for just a few hours a week to give you a break. I depend on my carer, especially during the school holidays, and during the school term time I can go out with my husband.

Ask your social worker about this, but you'll probably have to say that you can't cope anymore and desperately need help. The people who shout the loudest are the ones who tend to get the most help. It's not fair but that's the way it is.

I hope things get better for you.

Teresa
 
Oh honey, your OH is being totally unreasonable - but it could also be that he's scared. It could be that he's scared of the responsibility of looking after your son on his own as it's always been 'your' job. I'm not excusing his behaviour, but his unreasonable behaviour could be coming from another source.
Him staying out after work and coming in later is very unfair, and thoughtless and needs to stop.

It sounds to me as though you're depressed and frankly you need a break. If it's not your husband then maybe a close friend or relative can look after him so that you can have a break?
 
Is there a charity linked to your son's disability? You may get some support there or at least links to further support? Also wondered about a forum, at least there may be folk going thru the same thing and equipped to offer more ideas/solutions for you.
And a hug, really feel for you x
 
You might also be able to put your son's name down for any cancellations the respite centre may have - there may be a waiting list for them, but worth looking into?
 
Hope you don't mind, but I've had a root about on the net. Maybe this site will help:
Carers.org
It's the Princess Royal trust for Carers :)
 
Oh god .....sounds like I made my OH sound like a right Ass****e.
Now dont get me wrong, he can be at times.
I think its just because its always me that has him at school holidays -he always works - but I think I just totally lost it and let rip. I hate my job, and to be honest i'd pack it up tommorow if i could but I need the bit of money I get every month.
I suppose I was mad because, I have had enough of worrying about what to feed him ,changing him and sometimes he moans a lot - so I just wanted to run away from it all.Wot makes it hard aswell is that I can only go for car rides with him as the people carrier we had is broke and we only now have a small car and i cant get his wheelchair in it.
I know we could have a motability car - but I really dont want to get one -(Last time we had one my older son died soon after getting it - so it seems a bit like tempting fate )
Oh well , I suppose i have had my rant !!
have been in contact with social services - but as usual they come to the house -stick their nose in and say they will be back and you dont see them for dust !!.

I feel better today- and realise that I have to get on with the cards Ive been dealt with - cos if I dont no-one else will
so its back to ....
losing weight ,taking the mickey,shouting and screaming,acting like a kid and mucking around ..( well its how I cope!!)
Sorry for sounding off on you all , but I just needed to do it and thanxs for all your advice
XXXXXXX
 
I think your husband is being hugely unfair, yes you "only" work 12 hours a week but you need to add up the hours that you are at home looking after your son, I bet its a sight more hours than your husband is doing. I can't say I know exactly how you feel, but I did look after my grandad for 10 months and work full time which was very difficult especially as my grandad doesn't sleep at all at night. Your son is your husbands responsibility just as much as yours, I have a feeling if the roles were reversed he wouldn't cope as well as you have so far.

My advice to you is to get an appointment with social services and DEMAND to know exactly what you are entitled to, also ask for this information from the CAB. Does your son have a designated social worker? Also find out the official appeal process for the respite. See if you are entitled to any further financial help that maybe you can put towards a carer or someone to come in and clean the house. I know that shortly before my grandad went into a home social services paid for someone to come and sit with my grandad for 1/2 day a week so that me and mum could have a rest and go off and chill out somewhere. It wasn't much but it certainly helped and we were also given a cleaner. Good luck hun x
 
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