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The Supporting Act

GoRoweGoRowe Posts: 5Member Connected
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: 1,891Administrator 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: 1,783Member Pioneering
    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: 1,484Administrator 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: 4,986Community champion 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.
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • GoRoweGoRowe Posts: 5Member 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

  • GoRoweGoRowe Posts: 5Member 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.

  • GoRoweGoRowe Posts: 5Member 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. 

  • GoRoweGoRowe Posts: 5Member 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_ScopeRichard_Scope Posts: 1,484Administrator 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: 2,488Administrator 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 :)
    Chloe
    Online Community Officer
  • Jean EveleighJean Eveleigh Posts: 45Member Courageous
    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: 1,891Administrator 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: 45Member Courageous
    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 :-(
  • Karen4MickKaren4Mick Posts: 1Member 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_ScopeAntonia_Scope Posts: 1,783Member 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_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @Karen4Mick ;how 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. :)
  • Jentay69Jentay69 Posts: 1Member Listener
    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_ScopeAdrian_Scope Posts: 1,891Administrator 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? 
    Senior Community Officer
    Scope
  • Adrian_ScopeAdrian_Scope Posts: 1,891Administrator 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:
    Senior Community Officer
    Scope
  • veritercveriterc Posts: 148Community champion 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!
  • JelliheadJellihead Posts: 4Member Listener
    Welcome to the carer community.  We all have our own way of coping.  I like to indulge myself in a little "MeTime" corny as it sounds.  Having a bath to ease away the aches and pains, I now have osteoarthritis so my daughter, who has Downs syndrome, has become my carer.  Just walking to get a paper everyday gives me half an hour to clear my head.

    My nightmare's are the form filling!  Also the total disregard of Local Authorities care and support plans for carers, as now laid out in the Care Act 2014.  It is truly a disgrace. But worse than that you become more depressed, anxious almost to the point of neurosis.  The world really does feel as if it is against you.  Friends become enemies and you distrust those around you and their motives.  My main concern is always the health and safety of my daughter, while LA's seem to think they can implement changes without any risk assessments or provide any reassurance that my daughter will be safe?  So why even try to change routines, social activities and educational and health options when they are working to those that may or may not.  

    Independence is an amazing thing, but most of us care for someone who is extremely vulnerable.  The worry of them falling into the wrong mindset or befriending those that can do them either or both mental and physical harm is a constant worry which affects us all.  

    We all must take as much care as possible by allowing those we do trust to do their bit.  Help is there and it is hard to accept it, but we, as carers, need the space to breath and smell the roses too!

  • odessaodessa Posts: 2Member Listener
    Hi everyone ,  

    That tricky question being a carer .. I’m carer for an. 22 yrs old who has recently diagnosed asd and learning difficulties ..  she was born wid learning difficulties and she  being maintained in mainstream.. ( I have been a carer for 22 years) .. it being hard struggle and setbacks have been awful . .
    As my daughther doesn’t fix criteria in my area -  we have never had respite or social worker .. the effect of being a carer without support has been very damaging .. at times it has been overwhelming to be a parent .

      I live in outreach area and no services will come in my area .  I volunteer to support carers in borough .. I volunteer on carers forum/ panel and struggle on carers allowence only ... it been difficult ...lots ups and downs .

    . I’m artist and I find it’s getting hard to enjoy the things I love ..... I volunteer and work on projects to help others but sometimes I think I do too much. 

     the difficulty I have  - that I sometimes think parents who care for children/ young adults are sometimes ignored.. i know in my area it is get slightly getting better as there more involvement with professionals ,,, agency but there still seems to me that I am not heard ..

     i constantly worry as my  daughter is vulnerable .. I maybe waffling but I think that people who surround me can sometimes not understand where I am coming from ..
  • Chloe_ScopeChloe_Scope Posts: 2,488Administrator Scope community team
    Hi @odessa and welcome to the community and thank you for taking the time to share this with us all. Don't worry you weren't waffling! I'm sorry you haven't qualified for respite, that must become very difficult. What kind of art do you like to do?

    I'm sorry you feel ignored, I hope the community will be able to help with this. We have a parents and carers board that you may find helpful. Please do let us know if there is anything else we can do to support you :)
    Chloe
    Online Community Officer
  • foxukfoxuk Posts: 90Member Courageous
    Hi,

    At 64 with a lifetimes experience of Caring I am very tired. I started when I could 'go fetch for daddy' and have been a Carer ever since. I now care for 'just' my wife, in the past caring for mum, dad and wife. I am disabled myself having had my benefits upgraded to the enhanced rates of PIP for both Care and Mobility, on transfer from DLA last year.

    Carers are ignored and abused by the 'professionals' who interact with us. This has not changed and may never change.

    We have no power to object to the worst actions of those who we rely on. How can we take action that has any effect?

    We receive no help whatsoever from Social Services who are supposed to contact us every year. The last contact was about two years ago when they were doing a 'heavy' sales pitch on their shopping service, a burglar alarm salesman couldn't have pressed more stress buttons.  Of course we would have had to pay through the nose for this.

    We contact 'charities' and professionals who seem to think that every sentence is supposed to start with 'All YOU have to do....', and then spouting some twaddle that has already been tried to no effect. Gawds, if I was able to get stuff done why the hell would I be contacting them? There are rare exceptions.

    The nearest comparison to a Carer's plight is that of the junior doctors who were on duty for 72 hours before public opinion forced change. I count my 'on duty' time with life or death responsibility in decades not hours as do many other carers. 

    We were offered 'respite care' about ten years ago. This was after waiting two weeks for a social worker to contact us, following a dislocation of my knee (after the A&E visit I had to cook lunch within an hour). This was NOT a respite for me, it was made very clear that it was so that I could clear my parent's possessions from the house, which they were 'cluttering'  in the 'Social Worker's opinion. 

    I could go on but it's time for lunch..........


  • foxukfoxuk Posts: 90Member Courageous
    I must add a small addition to the above.

    The one thing I find that takes time and is really difficult for me is laundry. This has been treated as a deplorably sexist 'joke' by every female social worker I have spoken to as if it's a 'man thing'. I hasten to add that I am Welsh and come from a line of powerful women matriarchs and was taught to sew, cook and even knit as a child. 

    I have been asking for over 30 years a simple question. 'Where can I get laundry done at a price that doesn't cost more than buying new (cheap) basic clothes?' Every time I have spoken to a social worker I have asked the same question and never had the courtesy of a return phone call.

    And people wonder why I am a cynic....... 

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