If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

The Supporting Act

GoRoweGoRowe Posts: 5Member Listener
edited May 15 in Guest blogs
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?

Replies

  • Adrian_ScopeAdrian_Scope Posts: 913Member, Administrator Scope community team
    edited May 15
    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.
    Senior Community Officer
    Scope
  • Antonia_ScopeAntonia_Scope Posts: 1,577Member, Administrator Scope community team
    edited May 15
    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_ScopeRichard_Scope Posts: 1,344Member, Administrator 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 - Cerebral Palsy
  • Ami2301Ami2301 Posts: 4,684Member, Community champion Brian Blessed
    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.
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • GoRoweGoRowe Posts: 5Member Listener

    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

  • GoRoweGoRowe Posts: 5Member Listener

    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.

  • GoRoweGoRowe Posts: 5Member Listener

    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. 

  • GoRoweGoRowe Posts: 5Member Listener

    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_ScopeRichard_Scope Posts: 1,344Member, Administrator 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 - Cerebral Palsy
  • Chloe_ScopeChloe_Scope Posts: 1,585Member, Administrator Scope community team
    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 :)
  • Jean EveleighJean Eveleigh Posts: 42Member Talkative
    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_ScopeAdrian_Scope Posts: 913Member, Administrator 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?
    Senior Community Officer
    Scope
  • Jean EveleighJean Eveleigh Posts: 42Member Talkative
    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 :-(
Sign in or join us to comment.