The Supporting Act — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

The Supporting Act

GoRowe
GoRowe Member Posts: 5 Connected
Charlie (37) is a sometimes artist, as well as full-time carer for his wife Laura, a young woman with a range of complex physical and mental impairments.

As the carer, I sometimes feel like I’m only half a person. For some medical professionals, I’m not sure I exist as more than someone else’s supporting act. As far as they’re concerned, I probably winked into existence around the time Laura was first diagnosed and similarly disappear the moment she falls asleep. I am a badly-written sidekick — only an accent, a haircut and a pithy remark when things are at their bleakest.

For most of my adult life, I’ve been her carer. While others spend those early years of adult life becoming well-rounded people, we spent ours learning about a growing list of ever-expanding conditions. Laura has never allowed her disabilities to define her, but somewhere along the line I allowed them to define me. They have become the answers to that awful ‘What do you do?’ question that reminds me how unimportant I am. On brighter days, I’m the interpreter or the advocate, while on others, I just make the tea. I don’t think I really look at myself as a person, but as a string of responsibilities necessary to keep the woman I love going.

A woman leaning her head against a mans shoulder as they look outwards with their backs to the camera
I cherish the time I spend with Laura. She’s the strength I cling to and my entire support network. I’ve never been as resilient as her though — the challenges we face can get me down and I know I’m not the only one. Depression is rife in the carer community. According to Carers UK, 3 out of 5 of us have experienced it at some point and it’s not uncommon to feel as if you don’t matter. Not too long ago, and after much prompting from Laura, I went alone to the doctor and spent eight minutes of my ten-minute appointment fielding questions about her instead. I’ve been prescribed course after course of ineffective anti-depressants but have been subtly (and sometimes not very subtly at all) discouraged from therapies because the regular schedules might be incompatible with Laura’s care plan. All of this is done with that same old condescending tone, as if I’d mistakenly thought for a moment that I’m a person in my own right. It’s those sorts of encounters that make me want to give in. I don’t need to be reminded about her timetable. I already feel bad enough that I took the time to see someone at all.

With so many obstacles then, it’s easier not to bother, to ignore your needs or to forget them altogether. The last thing on your mind is tending to that other, less important person — you. And yet you should. You should talk about things. You should seek help. If only to be a better carer. When my mental health is in the toilet, the standard of care drops and if not for Laura being the force of nature that she is, she could easily become just a list of needs. She has never taken me for granted and there have been times where I’ve fallen so far, she’s had to take care of me instead. That never should have happened. She deserves better and, if I’m honest, so do I.

You can’t forget about yourself. You can’t hope it’ll just go away. Like any disease, depression doesn’t flee without a fight, if anything it just gets worse. The lethargy clings on until you can’t face trying to fend it off. You have to be armed, whether that’s with coping mechanisms or a group of like-minded people. You’ll have to battle to be heard and to get the support you need. This week is Mental Health Awareness Week and as a carer I spend so much time being aware of someone else’s needs, but for every week of every month from now on, I’m going to do my best to be aware of my own needs too.

What are your tips for protecting your own mental health? Do you think you get the support you need as a carer and if you have a carer, do you have any concerns about their mental health?
«1

Comments

  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    edited May 2019
    Thanks for sharing @GoRowe

    As a carer, I can definitely relate to having my medical appointments dominated by questions about someone else. I guess that's one of the drawbacks of having a family doctor. It doesn't happen at all now that my local surgery only seems to use locums, but nor do they have much of an understanding of my medical history.

    Glad to hear you'll be taking more time to focus on your own mental health. It's so important!
    As for tips, I think the best one I can give is to always take some time for yourself so you can recharge. It's not much of a tip, but it's one that helps keep my head above water.
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    edited May 2019
    Thank you for sharing your story with us @GoRowe, :)

    Blogging helped me escape my reality sometimes, even then my caring duties did not stop. But I had something to come back to, that's for me. I agree @Adrian_Scope in taking time out for yourself is essential and trying fun ways to spend time together with your loved one. 

    After hospital appointments, we would watch our favourite movies. Even though one of us would end up falling asleep, it takes the edge off of the aftermath of long and sometimes worrying appointments or day.
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Thanks for your post @GoRowe
    It has given me a real insight into how my wife might feel at times. I have to admit that my main focus has been getting through the next assessment or appointment and even though we talk afterwards, I haven't always thought deeply about how being the partner in such a situation feels.
    Food for thought. Thanks again.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Very insightful @GoRowe My fiance and my Mum are my carers, they change over when one needs to go to work or somewhere. I'm always thinking of their health first and its frustrating as I always say to them to go to the Doctor's when I know something is not right. The don't listen and just say "I haven't got the time".

    So I'm stuck in a catch-22 with them at times.
    Disability Gamechanger - 2019
  • GoRowe
    GoRowe Member Posts: 5 Connected

    Hi Adrian_Scope glad I’m not alone with the appointments but also glad we don’t have too many locums as I’d drive myself potty repeating my history every time. :D  :D

  • GoRowe
    GoRowe Member Posts: 5 Connected

    Hi Antonia_Scope do you still blog now? Was it about your caring experience or just general stuff? We unwind the same way and watch a movie and agree to leave the talking for tomorrow. Like you said it helps to take the edge off.

  • GoRowe
    GoRowe Member Posts: 5 Connected

    Hi Richard_Scope

    I hope it wasn’t too negative. I wouldn’t change my life for the world. I was just trying to say how important it is to look after your own mental health even if you spend most of your time on other people while throwing in some anecdotes about our lives. Me and my wife are very honest and open. She read this blog after I wrote it and I know how much she appreciates me and equally how much I rely on her. Mental health is a weird thing in that if it is bad, people can automatically assume someone else is to blame but that has never been true for me. I hate that medical professionals often assume  that if you have depression as a carer it’s because you’re a carer rather than it being a separate thing. 

  • GoRowe
    GoRowe Member Posts: 5 Connected

    Hi Ami2301 I’m my own worst enemy and I think it’s the same for lots of people. Laura is always nagging me about my health and it’s not just down to being a carer that I neglect it a bit but just the way I am. 

  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Hi @GoRowe
    It wasn't negative at all in my opinion. It's really useful for me to see the other perspective :)

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Thank you so much for sharing this @GoRowe! I found it extremely interesting and moving to read, you're a really good writer! I hope sharing this with us helped in some way :)
    Scope

  • Jean Eveleigh
    Jean Eveleigh Member Posts: 163 Pioneering
    As the disabled partner I can definitely relate to this, my partner was treated as if his only role was to keep me as healthy as possible and he was irrelevant unless something happened to me because he "wasn't on the ball" :-(  after 10 years and his mental health steadily declining and being ignored we have to separate to prevent him from having a full on breakdown and being able to access services for himself, we currently live 200+ miles apart and only get to see each other 2 out of every 5 week his health is still very up and down at the minute but at least he isn't just seen as my carer at the moment 
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Thanks so much for sharing this @Jean Eveleigh. I'm sorry to read about your situation and your partner's mental health. I hope he's now able to access some services for himself.
    It must've been a really tough decision for you both to separate. Do you have much support yourself now?
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
  • Jean Eveleigh
    Jean Eveleigh Member Posts: 163 Pioneering
    My partner didn't "get on" with psychological service (his words) so no he's not currently receiving any help as he refuses to engage, he has always refused to access carer support services too, I'm surviving I've gone from 24/7 care with 16.5 hours supported respite for him to just the 16.5 hours care call for core needs (bathing, dressing, feeding) and neighbours and an Red Alert emergency call button for the rest of the time - I struggle but what can I do social services won't give me any more hours :-(
  • Karen4Mick
    Karen4Mick Member Posts: 1 Listener
    Hi, I'm the person getting looked after. My partner and I met 6 years ago, he worked full time and I worked part time. We had a great year together and on our first anniversary we went to England for a hot air balloon ride and it was the most amazing thing ever. Anyway to pass the time until our train  was due we decided to play pool. After a couple of hours playing I leant down to take my shot and that was it, simple as that, my back was in agony. This was my second time of this happening, in the past I was crippled for 6 years before having 2 discs removed. My Mum was my carer then. Now my partner who was so passionate about his job for 30 years as a chef gave it up to look after me and I feel so guilty about it. I know he misses it so much. I can see him getting depressed but he just says he's fine and won't see a doctor. Me on the other hand have suffered from depression on and off for most of my life and I'm currently on antidepressants which are actually working for the first time. I just wish I could help him. Sorry for going on too long.
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @GoRowe sorry for the late reply. I do and yes it's more about information for carers. That's good to hear, it does help a lot :)
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @Karen4Mickhow are you doing today? Thank you for sharing this with us. I am sorry to hear this, it's hard to convince a loved one to seek help, if they are not ready or have not recognised any changes with their mental health. There's some tips from MIND's website on self care for depression.

    I'm glad to hear the antidepressants are working for you this time. No worries at all, we happy to hear from you. Keep us updated as much as you want. :)
  • Jentay69
    Jentay69 Member Posts: 3 Connected
    As a disabled older person, 70, my carer, (who is my daughter in law & I live with her, my eldest son & 2 of their adult sons) has her own health issues & I'm very mindful of the pressures & strains placed on her. She not only looks after me but also her veteran husband with PTSD, & a son with dyspraxia & a neurological disorder - they rely on benefits.
    However, she only receives carers' allowance for me, & as the son is now 20, their income has been cut massively with the loss of child benefit (although son is at college & has had to apply for Universal Credit) & tax credits. I know this has impacted on her & of course the rest of us. She tries to be very strong & is at college herself in an effort to improve her prospects but I do worry about her & the future. I try to help where/when I can - my contribution being mainly financial via my pension & pension credit, PIP, & moral support.

    Apologies that my first interaction should be so lengthy but what I'm trying to say is that carers are so tragically undervalued, underfunded & the psychological, emotional & physical stresses really need acknowledging. While finance isn't everything, a reasonable recompense would ease some pressures & save so much in the long term.
    Thank you.
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Hello @Karen4Mick and welcome to the community. Please don't apologise, you definitely didn't go on too long! :) I'm sorry you feel your partner's mental health is suffering. Does he have any hobbies or opportunities for 'me time' outside of his role as a carer?

    I've always really wanted to go on a hot air balloon ride, do you think it's something you'll do again? 
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

     Jentay69 said:
    Apologies that my first interaction should be so lengthy but what I'm trying to say is that carers are so tragically undervalued, underfunded & the psychological, emotional & physical stresses really need acknowledging. While finance isn't everything, a reasonable recompense would ease some pressures & save so much in the long term.
    Thank you.
    That's so true @Jentay69. Thank you.
    Your daughter-in-law sounds like a very strong person, but the pressures can be significant. Does she receive much/any support from local services?
    I do think carers are undervalued and very often they sadly undervalue themselves too.

    Welcome to the community. I hope you stick around and I look forward to seeing you about. :smile:
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
  • veriterc
    veriterc Member Posts: 220 Pioneering
    I definitely don't think Carers get the support they need.  For one thing, trying to find whom to contact for your charge's needs is a minefield.  As a positive contribution, with all the interest in Brexit, I am going to collect a template or 'Making use of your MEP'.  Whilst they are still there, not many people in the UK realise they are more powerful than MPs - ours wasn't going to rock the NHS boat, so we wrote to Brussels and got £2,000 worth private treatment paid for by NHS, and new drug that had been refused.  I'll let you know when I have made the template!

Brightness

Complete our feedback form and tell us how we can make the community better.