Think of the carers.
We all know that carers are the unsung heroes of today society! They look after their loved ones with no thought of themselves, no rest bite, and very little recognition for all their hard work and effort.
Most people would say it’s all in a days work, especially if it is their child that they care for. But I believe they deserve recognition for what they do.
If you are a parent/carer of an unwell/ chronically ill/ sensory impaired or disabled person I would love to hear from you.

I would like to hear your side of the story; how the diagnosis made you feel, what it means for you as a person, and tasks you have to do on a daily/ weekly/ monthly basis just to support a person you love
This guest series is about hearing disability from the carers perspective, and I hope to raise awareness and understanding of all that you do.
If you would like to participate, I would love to have you! Please contact me on the following:

Much love, Sassy X



2 comments on “Think of The Carers”

  1. Hi Sass. Thank you very much for your blog; it’s wonderful to read about your experiences and relate them to my own.
    I realised you posted ‘Think of the carers’ back in 2016, but I’ve only just seen it after it popped up on your twitter account!

    As you may have guessed, I am a carer. I am classed as an ‘unpaid’ carer, because I am a carer for a family member, and can’t get carers allowance because I’m also employed full time – (which obviously makes everything harder, particularly because my job involves shifts)!

    Anyway, I’m going to try and take a little about what I’ve experienced, the things which have stuck with me, whilst looking after someone who has lost their sight. I would like to apologise upfront for any rambling, but it’s the first time I’ve really spoken about anything like this yet alone written it down.

    I’d like to start with, and would like anyone reading this to keep at the forefront of their mind, that through everything I talk about, I have always been conscious that the person I care for has it worse. I’d trade in a heartbeat. For someone you love to be in so much pain, upset, to be going through such a horrendous experience, and knowing full well there is nothing you can do about it… it’s abysmal. I have often felt like a failure; like I should be able to fix things – even though I know that’s ridiculous. But it doesn’t matter how I feel. On my darkest day, I hide it. Because it’s bad enough that my partner has gone blind. Since she started going blind, one of the main things she has worried about is the effect it has on me. I don’t understand how she can be so strong in that regard. She’s had something horrific happen to her, in the loss of a sense – but one of her biggest issues with it is what it means to me. So if she can be that strong, then I need to be stronger. I don’t let her know it’s getting me down, frustrated, angry, despondent, whatever I may be feeling, it has to be another normal day. Because if I let anything other than normality show, then all I’m doing is adding something else to her plate.

    Although my partner’s sight loss is recent, we feel quite far down the line with it. It is now total, (bar the occasional light perception, if she’s staring at a blooming’ lighthouse). But we have adapted, as you must. Simple tasks are less and less complex. If we encounter an issue we invariably find a solution – but the most important part in trying to find one is for it to allow her to be independent. It is not a solution for someone else to do something for her; neither of us find that acceptable. (Wait, obviously I’m talking about simple tasks – walking down the local high street we obviously concede she needs a bit of help sometimes!!).
    Things to get better. It’s always bad, obviously, and there are days where my mind is not a happy place – but in general our mental health (I like to think) is a step above where is was last year, and the year before that. I’ve had dreams in the past where I’ve blinded myself – sometimes in one eye, sometimes totally. When I’m doing it, in this dream state, it’s because I want her to know that I understand what she’s going through. It’s all fine and good standing next to her and saying ‘I understand’, but I don’t, I can’t, not fully, as long as I can see. It’s a stupid idea, obviously – she needs me sighted! But while I’m dreaming, it seems like a sensible thing to do. Like it would bring us closer.
    It’s when I have dreams like that, that I’m reminded my mental health isn’t always as good as I’d like. That our situation does take a toll on the both of us.

    Something that I don’t talk about it much, because I do instantly get upset, is a point in my life where I felt so crushingly helpless. I held the person I loved in my arms, on the bedroom floor, where she had crumpled in tears. She screamed at me, banging her fists on my chest, through sobs, “Why can’t I see?”. In case you’re wondering, this was before she was blind – but it was the first time she couldn’t see her reflection in the mirror. She had thought it was condensed, tried to wipe it, and then realised she couldn’t see her hand either. All I could do was to try and reassure her. To tell her we would sort it; we would go back to the doctors, this time to a different, better hospital, and we would find out what was going on. But I cried too. What else could I do? I was out of my depth. Helpless.

    We’re a lot further down the line now, as I said. My partner has no sight, so I am now her guide. One of those things which I can’t quite decide if it makes me happy or sad, is that she doesn’t really like anyone else guiding her, because we’re so used to each other. I know what directions she needs, how much space she likes, what information she wants to be told. She understands what subtle movements of my hands mean, which direction I mean for her to move in, we can hold a conversation interlaced with commands and advisories about kerbs and objects as we walk down a road. With anyone else she’s either being dragged, pushed around things or stepped off kerbs. It might sound harsh and ungrateful, but I don’t mean it to be in the slightest – it’s just that everyone else, no matter how close, spends less time guiding her than I do – so it’s natural for them to be less in tune with her. We’re obviously grateful for all the help we get from friends and family. In a way, I find it nice that only her and I work that well with each other – but I am also sad that she depends on me so much to feel normal when we’re walking around shops, rather than feeling like a bag of shopping being swung around with other people.

    I feel like I’ve written a lot without saying much, so I will wrap things up for now, so closing paragraph! 🙂

    Being a carer for my partner feels so natural. It isn’t something I have to do anymore, it’s just how we interact. It’s like a sighted person asking their partner how their day was – (obviously she does that too…) – but I mean guiding her around a bus stop is as normal as talking. It’s just us, it’s how we communicate. I don’t think we would be as close as we are now if she hadn’t gone blind. I’d literally give my life to allow her to see again, that goes without saying really. But she’s not really my dependant. She’s not my blind partner. She’s just my wife. I love her, and I would, and will, do anything that she needs me to do.

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