Any carers out there?

I have been on this terrific site for a few weeks now and find everyone so inspiring and positive. I am a carer for my husband Peter (Sarcoidosis 21 years and COPD 2 years) and wonder if there are any other carers, apart from the lovely amagran, who use this site? It would be nice to chat sometimes and discuss our ups and downs too. Hope everyone enjoyed the Olympics and what were your thoughts on the closing ceremony? I think some of it was good, Emilie Sande for starters, but some was not quite up to scratch, sorry George Michael.

Stay well all. Love, sassy59 xxxxxxx

14 Replies

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  • Hi Sassy

    Yes I am a carer too for my hubby who has IPF. It is bloody hard coping with it . I don't know if you are aware but you can get a grant so you can have a break, beauty treatments, hairdressing etc. I got mine through the Oxfordshire County Council, so you may like to ask your local council. I got £260 which I am going to use for hair, massage and nails. I do work still, but have reduced my hours from September to 25 per week, and have taken flexible retirement. I work in a school. Life is hard, I would like our lives back, he is 61 and can't enjoy life anymore. But after 42 years of marriage, I will care for him.

  • hi, didn't know about a grant, but my hairdresser only charges a fiver and my family are great when I need a break. yes it is hard, and knowing what's best is hard too, its a bit like when the kids are young, do you spoil them or not. you want to spoil them because you don't know how long they'll be here, at the same time if you suddenly become a mum rather than a carer, will they think they are gonna pop off any minute, not sure am making sense here, I know what I mean to say. Another thing is that we have been married 40yrs next month and we have always had a bicker at each other without being nasty, if I stop doing that he'll think he's worse cos am being nice to him all the time. Bloody hell I sound like a right old harridan. But he gets at me too, other day he shouted " Carol, here " I replied, "am not a dog" he said," you're my bitch"

  • I am a Carole too and Pete and I have been married for 39 years this year so not quite as long as you and Richard. My family are also great but sometimes things get difficult especially as mother-in-law has cognitive impairement which will probably lead to dementia. On the whole though, all is good and we get on well. Loving our new grandson who is 8 weeks old and gorgeous. Makes you glad to be alive! Take care xxx

  • Hi grahamsgirl,

    Things are tough at times but we seem to cope well and get through it. I didn't know about the grant but will look into it. Sounds good though, and every little helps! I am full time carer for Pete which is fine as I get to enjoy our grandson too as all our family are close by which is great. I hope that you and your hubby stay well. I personally dread the winter with all the germs etc. but we all stive to keep Pete as well as possible. xxxxxxxxxxxx

  • Holiday grants for carers... disability-grants.org/holid... and disability-grants.org/

    NHS Choices: nhs.uk/CarersDirect/yoursel...

    Mind: mind.org.uk/help/community_...

    There are several sources of funding for carers to get a well-earned break, and that could be with or without the person they are caring for. Your local council, Rotary Club or Round Table may have some scheme in operation too. See disabledholidayinfo.org.uk/...

    I used to work in a community centre that had an active local carers group, they had a 'pamper day' at least once a year, getting trainee hairdressers and manicurists from the college, people doing fortune telling, local dance club doing a demo, as well as the usual NHS and council stands for healthy living etc. They would take a large hall for the day and get a grant towards a buffet lunch, as a 'persuader', too. The group themselves had a core of regulars, they'd got a mini bus at one time, but it was off the road the last I heard, well past it's prime. Just shows that you can do when you get together with others in an area.

    My wife works as a home carer, but isn't 'responsible' for me (she says!). I get to look after myself as best I can, although she makes the main meal each day. I do what I can, a bit of washing up and so on. Sometimes I'll put the oven on and make a start if she's short of time. At least she'll know the ropes by the time I need to get her to help me more.

  • You do make me smile Gordon! I am sure your great sense of humour helps to keep you going. I do hope your dear wife does know the ropes by the time she is needed to help you more or you are up the creek without the preverbial paddle! Keep smiling and making everyone else smile with you! sassy59 xx

  • Hello everyone,

    You all seem to know so much already, but if you want this all in one place the BLF have a booklet 'looking after someone with a lung condition' which has all info about caring, finances, looking after yourself, etc:

    You can download it from here:

    blf.org.uk/Page/Looking-aft...

    or order a paper copy here:

    blf.org.uk/Publications

    Would any of you like to form part of the BLF Family, friends and carers reference group? If so, I would contact you to hear more about your experiences and contribute to the project by being a case study and point of reference for any materials and activities we develop for carers.

    Email me if you are interested in this : katie.peters@blf.org.uk

    It's great you're here to support each other - keep talking and sharing your knowledge!

  • I have COPD but am a carer to my son who has Aspergers and ADHD combined, so I suppose I'm not a carer to a lung condition but a lung condition sufferer who cares for an Aspergers..

    I like to be different lol x

  • im in the same boat too.my son has aspergers.hes almost 12.he wont let me out of his sight at home. i call him my little shadow!

  • Mine was/is like that, even now he can go anywhere he likes but if I go he's on the phone wanting to know when I'm home..

  • Hi Eviex,

    You certainly do like to be different and I am sure your life cannot be easy. It is good to hear from you. I am thinking of applying to be part of the BLF family, friends and carers reference group as it is good to be able to get support and be supportive to others.

    Take care, xx

  • I can't seem to get support in my area or I'm just not looking hard enough.. I've just always done, got on with it without too much fuss. I did try and get support when he had a break down after his first love left. Terrible time with him but no-one would help, not social services nothing. First time to ask and zilch but I/we got through, as you do.

    I have just contacted Doncaster carers in the hope something will come of it but I don't hold out much hope.

    You should apply, there is more needed in every area..

    x

  • Hi sassy59

    I am a carer also to my husband of 29 years, he is 66years of age and i am 51 he has had copd for over 10 years He is very near the end stage although he is not on oxygen (confusing) He actually choked last week went out of it with a fit a very frightning thing

    we have a Community Matron who monitors him once a week

    I have MS mildly at the moment but worry about the future , looking after someone whom you love is very difficlult

  • My thoughts and prayers are with you chick..

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