I really thought about whether or not I should post this, which is kind of ridiculous when you think about it, because on my blog I should be able to talk about what I want.
As you may or probably may not know, this week, the 10th-16th June is Carers Week, a week when we draw attention to the fact that there are over 5.7 million unpaid carers in the UK according to the Carers UK Website and to add our names to the map of carers in the U.K.
I have never shied away from sharing the fact that I am a full time unpaid carer for my adult son, but this year has been really draining on me emotionally and physically for a number of reasons which out of respect for my son I am not going to elaborate on.
I started Years Of Caring to shine a light on unpaid carers, to help other people see that they are not on their own, and it has been amazing to hear from so many people. There were many who did not know they were carers because the people they looked after were family members, so they assumed they were just doing what they should have been doing anyway.
The irony isn’t lost on me that I have not had the chance to post in Years of Caring so far this year because I have been too busy caring for my son!
I also felt that there are only so many posts, so many stories you can write which essentially say the same thing – I am a full time carer, and I am exhausted and isolated, and move between loving being able to be with my son and resentful for the fact that I am here, finding myself in a world I didn’t choose to be part of.
I know Carers Week is all about putting Carers on the Map, and while I completely get that, I also feel that it is one of the issues with being a carer – that my own personality and hopes and ambitions have become subsumed by the fact that I am now defined as Eldest Years of Reading’s Carer.
As for many people, when you become a carer, your whole world is focused on the person you care for. You are either looking after them all the time, or sorting out their admin, or trying to get support, or just trying to make it through the day when you are so exhausted that you just want to curl up on the sofa and sleep. As a result, I feel that my world is contained in the care that I provide for my son, and I can’t tell you the number of events and opportunities I have had to turn down because of my caring responsibilities, when I could have for a brief time been Clare again.
It’s also endlessly frustrating when you feel excluded from the world because it is no longer accessible to you. Carers events are sometimes online, but when they run on for too long or at times when you can’t make it because you are helping the person you care for, you can’t make it and miss out again. The online forums are a brilliant way of engaging with people, but I read them and feel that people are dealing with far more incredibly demanding situations than I am, and that in comparison I am lucky with what I am dealing with. Although family and friends are sympathetic, the only people who really get it are those who have gone through or are going through it, but I also don’t want all my conversations to be defined by my being a carer.
Talking about books and blogging has been so important for me, and I have been fortunate to have read numerous wonderful books. Before I was caring full time I was able to take part in events and meet authors whose writing I love, for which I am truly grateful. Yet the book world is changing too, and unless you have the time and creativity to keep up, while gaining more followers on your social media accounts, you have to accept that you just talk about books you love when you can and hope that one person listens.
When Carers Week ends, nothing will have changed for any of us, however many marks we are on a map. We will just get up the next day and keep doing what we do because there is no alternative.
Until there is real money and actual support for those of us who care endlessly and without question, we simply keep being the carer, caring for our loved ones because the alternative is worse. Perhaps looking behind the label of ‘carer’ and facilitating real emotional, physical and financial support for us to try find the person we are and would love to be again is the campaign we really need.
Love
Clare
Xxx
Years of Reading Selfishly 
Thank you for sharing. I am a 78yr old shut in,but felt the need to tell you,my heart & prayers go out to you. So I’m sending you a ((( HUG. )))
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That is so lovely of you, and all hugs are always gratefully received. I hope you will accept this Huge Hug I am sending back to you with lots of love and I hope you are ok xxx
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So perfectly put Claire, it is so isolating, so “unseen” (I still get “patient doesn’t work” written in my own medical notes when I explicitly state I am a carer, so ignorant! And I agree about the forums, I find they are drowning in such sadness and tragedy but that makes it harder to handle in many ways. Trying to find a job that fits around caring and is flexible or the right hours with the stupid earnings threshold is impossible so I feel stuck and excluded.
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Thank you so much Gem – I know you absolutely “get” what I am talking about, and I really appreciate you taking the time to read and comment on my post. I also know what you mean about feeling stuck and excluded, as it seems as long as you are doing it, and not asking for help, then you are just left to get on with it. Am sending you lots of love, and am always here if you need a chat xx
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Thank you for this post. I do so enjoy your blog, so know that you are touching people you don’t really know! Wishing you, and your son, all the very best x
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That’s so lovely of you to say so Kathy, thank you so much! I love your blog and account too – thank goodness for books! Xx
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Very beautifully and truthfully written Clare x
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Thank you so much Emily, that’s lovely of you to say so xx
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I never appreciated what it meant to be a carer until my husband had major surgery and relied upon me for everything for two years. I’m so glad that you wrote this post because it seems to me that we need far more visibility about the problems and challenges encountered by people in situations like yourself. It seems to suit officialdom to sweep this under the carpet.
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Thank you so much. I think so many people don’t realise that they could become a carer at any point, and the fact of the matter is that if you get on with it, you are left alone to deal with it. You are absolutely right too, in that we are often ignored because it’s convenient to do so. I hope you and your husband are doing ok now, and sending you love xx
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Well Clare , wrap the cloak of affection that we selfish readers feel for you around yourself and your son. I can only imagine the endless Wake, care, sleep , care and repeat …… huge hugs
Sue x
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Thank you so much for your comment Sue, your words really mean so much, and all cloaks of affection are always appreciated xx
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Wonderful post, Clare. Carers definitely need more recognition and to be paid by the government. You are saving them so much money when you keep your loved ones home. Hugs to all the carers out there and the lovely ones they care for.
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Thank you so much Carla, that’s so lovely of you to say so xx
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