1. So so tired, any ideas?

    Posted by webquest at Thu Aug 02, 2012 4:58 pm

    Hi, I'm not sure what to say first, so I'm probably going to rant on..... Our house Me I'm disabled and a carer I have an 18 year old son with Aspergers, a 17 year old Daughter with Chronic Pain Syndrome, a 12 year old son who has had such a sheltered life surrounded by illness and death. My partner and carer who is gradually falling to bits physically and probably mentally. I have a son who has left home who is a struggling single parent. we have 2 friends,one locally who is very ill and the other lives away from Leeds. We live in a council house thats seen better days, with a council office who never sort out our repair requests, minor stuff like needing a new roof since 2005. We don't have any outside help, restbite, social services or anything. Our trips out are shopping, Drs, Hospital maybe the garden center for a cake!. Thats even the kids social life...apart from the internet when its working or the pc is...

    My Partner is a big man 6ft 8 and 24stone he has been sleeping on our very small broken sofa for 7 years as week cant sleep together for a number of reasons. I sleep upstairs in the most uncomfortable bed that is ready to break. Its really low to the floor so on the days I can manage to get out of bed I have to roll off it onto the floor, the rest of the time my partner has to try lift me out. His knees are knackered, he has plantar fasciitis in one foot and a bad back that can make him cry. On my bad days I try not eat or drink so I don't need the toilet etc .. I also have hyperhydrosis which is kind of like massive flushes I use towels to try soak up the sweat and make out its not too bad so my partner doesn't have to deal with me as much. He never really clicks on, he's too busy with everything else! But it really isnt nice spending over 7 hours in a wet bed in wet clothes, luckily I don't smell I'm just soggy and anything that touches me is soggy too.

    So this is my first post and I am touching on one problem of many, and I know most of you are experiencing the same problems or have experienced the same problems. But can anyone give me any ideas on how to......

    Reduce the pressure on my partner?
    Get funding for a heavy duty bedsettee ?
    Where is the best place to get an adjustable bed from, how to choose whats best?
    Any funding to help get the bed either?

    I don't want to come across as "poor old us" I just need advice, we have tried for years to just get on with it and play "everything is GREAT!"....but we just can't any more. Thanks for reading, healing thoughts to you all :)

  2. Re: So so tired, any ideas?

    Posted by jaye2080 at Thu Aug 02, 2012 8:14 pm

    hi Sherrie, and welcome to the site.

    When i was desperately struggling with my husband a charity worker once told me that to get any real help I had to go through our GP because, as it was put to me, he was the key to 'open sesame'.

    You say that your husband is your carer, and so he has the right to a carers assessment. That assessment is to determine what would make his life easier. There is such a thing as a carers grant, and it's my guess that a decent bed to sleep on would be a high priority. You should be able to find out about this from your local council offices, if not give social services a ring and tell them your husband wants to have an assessment - this is his legal right by the way, but whether anything comes of it is a different matter.

    Other routes of funding could be charities such as the lions etc. you could try googling for charities as there are probably a lot more than you realise.

    If you don't get what you want at the first asking then do keep on asking, very often it's a case of 'he who shouts loudest and longest gets heard'

  3. Re: So so tired, any ideas?

    Posted by webquest at Thu Aug 02, 2012 9:01 pm

    Thanks for replying Jaye :D

    We are both carers, can we get assessed together or do we do it separately?

    It would be nice if the dr's could help, but its a big practice, we never get to see the same person. We ring at 8am sit on hold for 30mins and if we are lucky all the appointments haven't gone. I tend to go see them with a massive list and get them to write out a prescription and then that's me done for another 6 months or so. do they need to have seen you alot or doesn't it matter?

    I did look at a charity based in Liverpool for financial help but they needed a referral, I don't really know who would be able to do it. No outside agencies are involved, plus I don't know what they do. A few years ago we had someone out from the social services who said we could get restbite for my autistic son, we are always struggling with money (I presume it costs?) plus I am the only one who can deal with my son, so I didn't think it was possible that he would cope going to someone to stay. So the worker said that's all she could offer so thats why we haven't bothered with social services etc

    I probably should try harder but, I have intermittent memory and speech problems so I tend to just sit at home and hide away. It sounds silly I know. I have always been the head of the family even before I became ill I was my mums carer, they all look to me to sort out the problems. so on my good days that's what I do. but there is so many things and so little good days.

    Oh lol I,m ranting on again lol


    best wishes


  4. Re: So so tired, any ideas?

    Posted by jaye2080 at Thu Aug 02, 2012 10:13 pm

    Hi Sherrie,

    I should think carers assessments would be done seperately since it depends on what the individual carer needs.

    I've just read through your initial post and notice that you are disabled, so i'm wondering do you get DLA, or indeed does anyone in the family get it, your autistic son for instance. That should be all you need to get some help.
    To get all the medical help I needed for my husband I wrote everything down in a long (very long) letter to the doctor, then made an appointment to see him and just handed the letter over. Doing it that way made sure that i didn't miss anything out in their all too short appointment slots. It worked wonders for us. If you have to go to see the doc it might be a good idea to write it all out first. You will also need to stress that both you and your partner are struggling to cope now and need some help. It wouldn't do any harm for your partner to see the doc and let them know that he needs some support too.

  5. Re: So so tired, any ideas?

    Posted by webquest at Fri Aug 03, 2012 3:11 am

    Hi Jaye

    Thanks again for replying, I get DLA and so does my son, I haven't applied for my daughter as I think they would think it cheeky. Though some of my daughters needs are expensive. I would imagine in a few years she will leave home, so maybe she will apply then. My Autistic son will probably live with us till we pop off, unless he meets someone....which is hard as he rarely leaves the house.

    This letter for the Dr, what do put in it? Our problems and difficulties or our medical needs. I'm sorry to keep asking questions....But my mum used to say the more information you are armed with the more you have to battle with.

    Thank you so much for your help, big hugs to you and yours :D


  6. Re: So so tired, any ideas?

    Posted by webquest at Tue Aug 28, 2012 7:35 pm

    Thanks to a wonderful lady called Gill at the Carers Center Leeds, life may get a little easier if all goes to plan.

    Gill spent ages with me and my partner filling in a Community Care Grant form so that I may be able to get a comfy bed and chair and a sofa bed which is so badly needed.

    I have also been in touch with our GP and hopefully she's now on the same page.

    We as a whole family are now going to be assessed by Adult Social Care.

    I'm probably feeling too optimistic, but one days optimism isn't going to harm.... :?
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