#1
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this is just a moan because if i don't write it down i swear i am going to throttle my husband.
I am tired beyond belief and it is now affecting my health,my son Scott is very complex and needs alot of care,we also have a 7 yr old and 4 yr old.
my 4 year old is affected badly by the amount of time we spend in hospital and was very frightened by a recent event when scott stopped breathing and was blue,the ambulance came and got him breathing but they saw it all.she is now working with the very young carers dept.
my husband doesn't get it at all.last week i had no less than 11 appointments to take scott to aswell as school drop off and pick up.i dont drive and want to learn but he has now said it is selfish to spend the money on lessons.
he seems to think that scott will wake up one day with the ability to eat,talk walk etc.
i get 5 hours respite a week provided by the hospital split over 2 mornings so cant really get much done.how the hell do i get him to realise i need him to help me more.
sorry for the long post.Sad
#2
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Hi Chrissie - I couldn't read this and leave it! I know I'm lucky in that my husband takes over looking after Jack when he comes home from work. However, that was after a long talk about me getting tired and often ending up in tears mainly due to frustration and feeling overwhelmed by appointments and things that needed doing in the house that I couldn't always get round to and then him coming home and saying things like ' I'd better do the ironing had I otherwise it'll just pile up'. I know I set myself too high a standard but I've dropped this often when my eldest son wants help with homework, someone to play on PS with him etc.

What would your husband do if you were (God forbid) ill yourself? How would he cope then? Maybe he would like to trade places for a couple of days - you leave the house for 8 hours and let him deal with school runs, appointments, housework, meals etc! I know this is probably impossible but you could 'suggest' it to him and ask him to think about it. I don't know about you but I have a planner calendar up on the wall in the kitchen for appts etc - mine and Jack's columns are usually pretty full, Ryan's is all sport and social and my hubby's barely says anything at all unless it's an appt for him! I do insist now that he comes to hospital appointments with me though - like I said to him - I'm not a single parent and just because I don't go out to work full time doesn't mean I'm a slave either!!

I don't blame you for having a a rant - sometimes I end up ranting at hubby - usually followed by crying and swearing (on my part) and he just looks at me shocked cos I'm usually so organised and laid back - but we've got to let off steam sometime don't we!

PS: Is there any way you could ask for appointments to be spread out a little or are you like me - just feel lucky to get them?! x
#3
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Hi sorry your having such a hard time. I'm a single parent so can relate to it all being on you . My son's dad cant come to terms with him , same thing that one day he'll just get up and be normal, thats why he walked away , so does my mum , so i do understand how annoying that is . Its a lot of pressure on you . I think some men just cant come to terms when things arent right with their child , it a male thing . My daughter is older ( 12 year age gap ) but i know she found it very hard at the start and would lash out at me , still does sometimes , i know with her its like grieving for not having her brother . Also its the fear of not knowing what will happen . Dont think you can force someone into the real world that your son will always have problems , think your husband needs to do that him self , but do try to talk to him and explain how your feeling and how ill its making you , i really hope you get something sorted out , thinking about you xx
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#4
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Oh crissie Sad I really feel for you, some people just don't get it even if they're under the same roof! Are you eligible for family fund? You could apply through them for driving lessons, or you could apply for a carers grant through social services, that's upto £250 I think which would pay for some!?

Secondly, have you thought about getting some proper respite!? If things aren't going to get any better it might be time to start thinking about it! Either somewhere like a respite centre or direct payments to employ someone you choose to take scott or come in and do all the night stuff while you sleep! We were recomended acorns for euan but I feel euans a little young for that just yet, we've JUST got out direct payments starting this month so are trying to get that arranged, we've been given 2 overnites a month and 8hours (which is like 1day). They're paying the higher rate for the night as euan has lots of night care, I really think you should consider it, it sounds like you could do with a break!!! Xx
#5
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hi,sorry its taken so long to reply been a busy few weeks.
i recieved my provisional licence yesterday so am going to be booking my 1st lessons later this week.to be honest i don't care how selfish he thinks it is i have saved up that money for lessons and i am doing it for the Children,to make our lives easier.
Scott has been really poorly with an aspiration so not had a good time recently,also more appointments have come through for his 7 day EEG and monday he has a mcug kidney scan,tuesday his sweat test for CF and the normal physio and SALT that we do every week so appointments are not really slowing down yet.
Our complex needs team offered us 1 night a week respite and my husband has said he doesn't want someone else in the house while he is here,so i'm not sure how i'm going to get sleep.anyway moan over.


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