Parents and carers
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Need Support but Partner Reluctant

NatureSeekerNatureSeeker Member Posts: 10 Listener
Hi everyone.
This is my first post. I am a carer for my partner, although I do have anxiety and fatigue problems of my own.

I've been 100% financially supporting him with just my benefits for over 7 years as he struggles to make any money as a self-employed film-maker. His health is seriously holding us back, and is just getting worse (he has CFS and a genetic condition where his immune system doesn't make enough white cells, and the symptoms of that are increasing all the time). When we first moved in together things were difficult, but not impossible, and he's always making out that he'll improve again. I really don't think he can.

We have been living in substandard accommodation as nothing else is available with housing benefit near where he has contacts. He has said for a few years that he'd rather be dead than claim benefits again. He feels he wouldn't be able to do projects if he was claiming any entitlements, he'd be so depressed. Creativity is the only thing he wants to do and the only thing that distracts him from his chronic pain.

I have been waiting nearly 2 weeks for him to just look for his birth certificate so we can send off a form for his NI number, so that he can apply for PIP (even though he doesn't really want to). He doesn't have a bank account now either. He said his old one must've been closed as he didn't use it for 10 years. He is extremely private and hates the thought of telling people about his lifestyle/finances. I'm desperate for progress!

So, the situation is that I have no support. Specialists and GPs have no idea how to help him. He's on the highest painkillers he can get, but they make him depressed and drowsy, so he only takes them a few times a week. I have given up my life without realising what I've done, and now I want to leave, but he's too ill and unsupported for me to leave. He has zero income, and I have to do almost everything for him, as his pain is intense and his fatigue seems to be extreme for about 80% of the day. His mood swings are crazy because of the pain, so it's hard to discuss serious issues, and I have no one else to talk to. I don't drive and we're stuck indoors all the time, neither of us have any quality of life. His parents have lost touch with him because they can't cope with his illness and don't believe it's as bad as it is. There is no one to ask for help.

I just need some advice as to what is possible. I'm hoping that he can claim PIP without having to stop his efforts at making films etc. That's the only thing that keeps him going. I have to get out of this situation, but feel I have to help get him financially independent first. As soon as possible! This is seriously affecting my mental & physical health, and I haven't found any local groups or organisations to try. What help can he get? Any suggestions welcome.

Replies

  • poppy123456poppy123456 Community champion Posts: 20,617 Disability Gamechanger
    Hi,

    I'm sorry you're going through all of this. Yes you can claim PIP and work, it may go against you if the reasons for your claim contradict the work you do but people do claim it and work.

    He will need his NI to be able to claim any type of benefit and this includes PIP. Is there any reasons why he doesn't have a NI number? Usually they send it to you just before you reach your 16th birthday, if your a British citizen. If he's had it and just lost it or forgotten the number then he just needs to contact the NI helpline, answer the questions and they'll send it to him in the post. He must have had one in the past because you can't get a job without this. If he's always worked has he paid NI contributions or tax? His NI number can be found on the HMRC website, he'll just need to make an account to see all of his details. This is the link for that,

    He will also need a bank account of some kind to be able to receive the benefits if the claim is successful. Other benefits maybe possible if in future you do decide to leave but of course he can't do anything without a NI number and a bank account.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @NatureSeeker, and a warm welcome to the community!

    Thank you for sharing this with us- I'm so sorry to hear about your experiences. It sounds as though you've been through a lot and things must have been tough for both of you. Given the circumstances, I would strongly recommend speaking to Carers UK who will likely be able to give you the best support and advice on moving forwards, both you and him. You can find their support line and contact information here.
    Our telephone helpline providing information is open on Mondays and Tuesday between 10am and 4pm - 0808 808 7777
    In the meantime, do keep talking to us and let us know how you get on, and we'll do our best to support you.
  • axwy62axwy62 Member Posts: 140 Pioneering
    I sympathise immensely with how you feel having been through something similar myself. I admire you for doing your best to make your partner financially independent before you leave and hope you succeed.

    That said, there may come a point where, particularly if he isn't co-operating, you have to say enough and walk away. When I married him, my first husband was the life and soul of any party, always upbeat, worked hard, earned good money etc etc, then he was struck down by a brain tumour and changed completely so that I suddenly had 3 children instead of 2. It took me 11 years to accept that whilst it wasn't his fault, it wasn't mine or the children's either and I eventually had to put them and myself first. It was probably the hardest thing I've ever done to ask him to leave and I couldn't even carry on providing some support because he misinterpreted that as meaning I would let him come back, but it was also the best thing I could have done for all of us. He had to accept outside help, I got a life back and the children were finally able to just be children and not part-time minders for an adult who was entirely unpredictable and couldn't even be trusted to collect them from school on time or not spend the months housekeeping money on computer games.

    I truly wish you the best of luck.
  • NatureSeekerNatureSeeker Member Posts: 10 Listener

    "... Is there any reasons why he doesn't have a NI number? Usually they send it to you just before you reach your 16th birthday, if your a British citizen. If he's had it and just lost it or forgotten the number then he just needs to contact the NI helpline, answer the questions and they'll send it to him in the post."
    Hi Poppy,
    Thanks for your reply.

    He doesn't have any paperwork from his past, as he left it all at his ex partner's when he left. He was pretty much on the verge of dying at that point as he'd been left in a room with nothing to eat or drink, and he had double pneumonia. So it was a very stressful time, and he's been too ill to work, or working for himself but not earning much if anything, ever since then. He was in hospitals, and staying at his mum's, where he wasn't getting any mail. He sort of disappeared from everything for years.

    I finally got his birth certificate today, so I've scanned it, and hopefully it's of good enough quality to be used, and we'll soon get his NI number, and we can progress! The bank account should tackled now i guess, which is difficult as his name is not on any bills at all. Only hospital letters. He's a sort of ghost, which makes everything awkward!



  • NatureSeekerNatureSeeker Member Posts: 10 Listener
    Hi @NatureSeeker, and a warm welcome to the community!

    Thank you for sharing this with us- I'm so sorry to hear about your experiences. It sounds as though you've been through a lot and things must have been tough for both of you. Given the circumstances, I would strongly recommend speaking to Carers UK who will likely be able to give you the best support and advice on moving forwards, both you and him. You can find their support line and contact information here.
    Our telephone helpline providing information is open on Mondays and Tuesday between 10am and 4pm - 0808 808 7777
    In the meantime, do keep talking to us and let us know how you get on, and we'll do our best to support you.
    Hi Pippa, and thanks for the warm welcome!

    I managed to find a local disability/carers' group about a mile from me. Not sure about self-referring to them, but will keep it in mind. The main help we will need is with getting a bank account and filling in the PIP form. Then, if I leave, what assistance can he get. Thank you for the contacts, I will keep then near by to use them, and I've checked out the site. It's good to know where to go, and that I can communicate on here!
  • NatureSeekerNatureSeeker Member Posts: 10 Listener
    axwy62 said:
    I sympathise immensely with how you feel having been through something similar myself. I admire you for doing your best to make your partner financially independent before you leave and hope you succeed.

    That said, there may come a point where, particularly if he isn't co-operating, you have to say enough and walk away. When I married him, my first husband was the life and soul of any party, always upbeat, worked hard, earned good money etc etc, then he was struck down by a brain tumour and changed completely so that I suddenly had 3 children instead of 2. It took me 11 years to accept that whilst it wasn't his fault, it wasn't mine or the children's either and I eventually had to put them and myself first. It was probably the hardest thing I've ever done to ask him to leave and I couldn't even carry on providing some support because he misinterpreted that as meaning I would let him come back, but it was also the best thing I could have done for all of us. He had to accept outside help, I got a life back and the children were finally able to just be children and not part-time minders for an adult who was entirely unpredictable and couldn't even be trusted to collect them from school on time or not spend the months housekeeping money on computer games.

    I truly wish you the best of luck.
    Hi axwy,
    Thanks for your reply.

    Sorry to hear about your very difficult times, it's so complicated when people change and you have been so close to them. It is reassuring to know that others managed to make it through similar things, and that you and your children are in a better situation, and also your ex is taken care of.

    Lately I have really been focusing on the type of things you said: putting myself first. I always believed that things would get better, they had to, but instead they all got worse, year on year. I doubt things could get much worse than they are now, so I am reassessing my life. Of course it's nothing like I imagined it would be. I have had some amazing experiences through his projects, and contacts, but all I ever wanted was my life to be better, to be happy, to have a nice home. Being around celebs isn't going to change my home life, although I did think it eventually would, for a while. I have to do what gives me a chance at success before even more of my life vanishes down the drain! I didn't expect to be the only one paying for everything for over 7 years, and be living in this hovel! I left a comfortable home in Scotland to be here, and all I can think of every day is going back to Scotland and being free of all these dramas and disasters! Doing my own thing again. I haven't set boundaries to protect myself, and I've given up too much.

    Thanks for sharing your story with me, and your best wishes.
  • [Deleted User][Deleted User] Posts: 0 Listener
    edited September 2018
    sorry if this is harsh but some men need mothers and will drag you down to a levil were you have no choice but give up and leave  blameing an illness i beleave is just a way to keep someone near he seems to be intent on his way leaveing you to pic up everything and keep him in the state he likes ?getting him help will result in him getting mad as he does not want it by the sounds of it?the fact you will make sure he is okay before you leave is no good for you concentrate on you he is not a child mine was like this and swore he would die if i left even told the girls that  20years later at a wedding i saw him and said look girls i did not kill him he still here ?but has a new slave keeping him

  • NatureSeekerNatureSeeker Member Posts: 10 Listener
    sweet said:
    sorry if this is harsh but some men need mothers and will drag you down to a levil were you have no choice but give up and leave  blameing an illness i beleave is just a way to keep someone near he seems to be intent on his way leaveing you to pic up everything and keep him in the state he likes ?getting him help will result in him getting mad as he does not want it by the sounds of it?the fact you will make sure he is okay before you leave is no good for you concentrate on you he is not a child mine was like this and swore he would die if i left even told the girls that  20years later at a wedding i saw him and said look girls i did not kill him he still here ?but has a new slave keeping him

    Hi Sweet,
    Thanks for your input. I know I definitely have to put myself first and free myself of things I don't want in life. I'm taking each day as it comes, but have plans taking shape. It's hard when he is in a loving mood, but I'm trying to keep a distance.
  • [Deleted User][Deleted User] Posts: 0 Listener
    sweet said:
    sorry if this is harsh but some men need mothers and will drag you down to a levil were you have no choice but give up and leave  blameing an illness i beleave is just a way to keep someone near he seems to be intent on his way leaveing you to pic up everything and keep him in the state he likes ?getting him help will result in him getting mad as he does not want it by the sounds of it?the fact you will make sure he is okay before you leave is no good for you concentrate on you he is not a child mine was like this and swore he would die if i left even told the girls that  20years later at a wedding i saw him and said look girls i did not kill him he still here ?but has a new slave keeping him

    Hi Sweet,
    Thanks for your input. I know I definitely have to put myself first and free myself of things I don't want in life. I'm taking each day as it comes, but have plans taking shape. It's hard when he is in a loving mood, but I'm trying to keep a distance.
    yes it is but loveing moods do not last xxx be happy in your self life is great out here without the stress

  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Do let us know if you'd like any support with your PIP assessment when the time comes, @NatureSeeker. The information on PIP on Scope's website may be worth a read, and Citizens Advice have some great guidance on filling in the application form.
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