can anyone help? — Scope | Disability forum

can anyone help?

Hi this isn’t something I normally do and is really difficult so I hope this all makes sense. 

I need some advice regarding my situation and I thought this would a good place to start. I don’t have anywhere else to turn. Firstly I am disabled and have quite complex physical and mental illness. My physical illnesses have gotten progressively worse over the last few years and my daily life has been affected quite badly. 

I live with my partner who became my carer when my health got worse. Recently I moved into more accessible accommodation so I am able to do a lot more now than I used to so I don’t need as much help. They have their own mental health struggles, diagnosed with borderline personality disorder. For the last few years it’s been an ongoing problem. We go in a constant cycle. Things will be good then they will relapse. During these they become snappy and withdrawn, and as I have PTSD I can’t cope as it reminds me of abuse I suffered. The last year or so has been rough especially with the pandemic. But it’s now at a point where I can’t cope any longer. I’ve turned into a carer for them and I’m not well enough to continue. If I don’t wake them up they won’t get up, if I don’t cook breakfast they wouldn’t eat. If I don’t get up to cook dinner we wouldn’t have it until a stupid time. I have to hand them their meds or they wouldn’t take them. The house is a mess and unclean, I do my best but with my health it’s too much. They are in compete denial about this and make me feel like I’m moaning or seeing mess that isn’t there. I know it’s a cliche saying but I feel like I’m walking on eggshells. They had an episode recently where they left the house and was sending worrying messages to me and other friends. Who ended up then having to call the police because they were saying things that made it seem they were about to hurt themselves. 

I try to talk to them about this but they take everything as an attack or that I’m going to leave. They even make offhand comments about killing themselves if I ever left but I don’t know how serious they are about this. They’ll sometimes go to the doctor or try therapy but they’ll never be fully honest with them. Before lockdown they went away for a few days and it was so nice to be on my own. I was so much less anxious, I had a nice routine and I could just do what I wanted without having to worry about them. We are together pretty much all day and it’s not healthy for them to be so dependent on me but I suggest changes and they don’t like it and as I can’t go out alone I can’t get away from them. 

I’ll be honest I don’t understand everything about the illness but I do my best. I research and read about people’s experiences to try and best help them. So I know their behaviour is part of the illness. But I can’t cope. The cycle just keeps repeating and I don’t know how much longer I can live like this. It’s now getting to the point where it’s affecting my physical and mental health. I feel like I’m living in a permanent state of anxiety about what they’ll do next or what mood they’ll be in when they finally get out of bed. I don’t know what to do or where to turn or how to help my situation. I’m so sorry this is so long and thank you for reading if you’ve got this far 

Comments

  • Sandy_123
    Sandy_123 Member Posts: 2,209 Pioneering
    Hi @hopeinthestorm sorry your going through this and glad that you reached out, I'm not best person to advise on this, I just wanted you to know some one is here. If you go to Google and type in helplines  a list will come up for you. I think also might be information on here too maybe on home page. This is your 1st step to getting help. Hopefully some1 else who has a few links will respond soon.
  • Sandy_123
    Sandy_123 Member Posts: 2,209 Pioneering
    www.samaritans.org.uk 
    Phone: 116 123 (free 24-hour helpline
    Scope's helpline provides free, independent and impartial advice and support on issues that matter to disabled people and their families. Phone: 0808 800 3333. Textphone: dial 18001 then 0808 800 3333.
    Just a few I have for you there are loads more 
  • Marrybrown
    Marrybrown Member Posts: 12 Listener
    I have the same problems!
  • hopeinthestorm
    hopeinthestorm Member Posts: 12 Listener

    Sandy_123 said:
    www.samaritans.org.uk 
    Phone: 116 123 (free 24-hour helpline
    Scope's helpline provides free, independent and impartial advice and support on issues that matter to disabled people and their families. Phone: 0808 800 3333. Textphone: dial 18001 then 0808 800 3333.
    Just a few I have for you there are loads more 
    Thank you so much 
  • Sandy_123
    Sandy_123 Member Posts: 2,209 Pioneering
    @hopeinthestorm your very welcome, let us know how you get on 
  • Sandy_123
    Sandy_123 Member Posts: 2,209 Pioneering
    @Marrybrown you ok, there are lots of help lines etc that can help.
  • leeCal
    leeCal Member Posts: 4,362 Disability Gamechanger
    edited February 13
    My local surgery offers six weeks of free counselling, perhaps yours does too. This may help to highlight some of the most important factors and help you understand the situation and your options more clearly. Just a thought.

    Every year without fail Christmas gives me an all over warm glow... yep, faulty tree lights.


  • hopeinthestorm
    hopeinthestorm Member Posts: 12 Listener
    Sandy_123 said:
    @hopeinthestorm your very welcome, let us know how you get on 
    I will. It’s just so hard because I’m never alone in the house. And communication is one of the things I find really difficult
  • hopeinthestorm
    hopeinthestorm Member Posts: 12 Listener
    I have the same problems!
    I’m sorry, it’s such a hard situation. I’m here if you’d like to chat 
  • Ross_Scope
    Ross_Scope Posts: 5,466

    Scope community team

    I'm sorry to read you're struggling at the moment @hopeinthestorm, but I'm glad you've spoken out and asked for help.

    Have you spoken with friends and family about what might be the best way forward for you both? They might have some valuable input.

    And is the GP of your partner aware of all the things she is going through and what she has said to you? It can't be easy to go through such things alone and hopefully you have spoken with people who would have the expertise to help you.

    We have sent you an email with further information inside, in case you hadn't had chance to see it yet :) 



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  • hopeinthestorm
    hopeinthestorm Member Posts: 12 Listener
    I'm sorry to read you're struggling at the moment @hopeinthestorm, but I'm glad you've spoken out and asked for help.

    Have you spoken with friends and family about what might be the best way forward for you both? They might have some valuable input.

    And is the GP of your partner aware of all the things she is going through and what she has said to you? It can't be easy to go through such things alone and hopefully you have spoken with people who would have the expertise to help you.

    We have sent you an email with further information inside, in case you hadn't had chance to see it yet :) 



    Thank you for replying. 

    I don’t have many people in my life I can talk to. I don’t have contact with my parents. And although my aunt is supportive she lives back in my hometown 3 hours away so she’s limited to what she can do. 

    Their friends are aware of their mental illness and although they are supportive I don’t think they realise how draining it is on me. I spoke to their best friend yesterday and she just says not to tell any of what I’m feeling because it will set her off. They take everything as an attack and I worry about saying the wrong thing so I tend to keep my feelings to myself. 

    Their GP is aware they have mental illness but not that it’s bad again. They are reluctant to speak to their gp and will put it off until it’s really bad. 

    Thank you I haven’t received anything yet but I will keep checking 
  • Jean Eveleigh
    Jean Eveleigh Member Posts: 161 Pioneering
    I know you are worried about their health but as you have identified this is affecting yours as well.

    I suggest calling the GP and social services and asking for a crisis meeting - request they come out and talk to you and your partner together, write down your concerns so that you are not dismissed or knocked off course.

    Start the meeting by saying this is not an attack or a call to end the relationship but that you cannot cope, your health is being affected and you are worried about your partner's safety - then list your concerns clearly and ask what help can be given to support you both.

    If they refuse to come out then do this as a letter instead and send it to them, your partner may feel betrayed to begin with but you need to do something you cannot allow this situation to continue for either of your health.
  • Tori_Scope
    Tori_Scope Posts: 6,718

    Scope community team

    edited February 14
    Thank you I haven’t received anything yet but I will keep checking 

    Hi @hopeinthestorm :) I can see that Ross emailed you at around 1pm yesterday. Has the email not gone through? 
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  • hopeinthestorm
    hopeinthestorm Member Posts: 12 Listener
    Hi, no I haven’t received anything yet
  • Tori_Scope
    Tori_Scope Posts: 6,718

    Scope community team

    Hmm. I will try resending it @hopeinthestorm :) 
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  • Ross_Scope
    Ross_Scope Posts: 5,466

    Scope community team

    Hi @hopeinthestorm

    That's odd, apologies about that. It should now be in your inbox, please ensure you check your spam folder.
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  • hopeinthestorm
    hopeinthestorm Member Posts: 12 Listener
    Hi @hopeinthestorm

    That's odd, apologies about that. It should now be in your inbox, please ensure you check your spam folder.
    I’ve received it now thanks! Will try and reply tomorrow. Thank you for the support I really appreciate it 
  • Ross_Scope
    Ross_Scope Posts: 5,466

    Scope community team

    Hi @hopeinthestorm

    That's odd, apologies about that. It should now be in your inbox, please ensure you check your spam folder.
    I’ve received it now thanks! Will try and reply tomorrow. Thank you for the support I really appreciate it 
    Glad you've received it.  Please reply in your own time, no rush :) 
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