In September 2021, for a myriad of reasons that are far too complex and far too emotional to explain in a blog post, I found myself in the slightly unexpected position of now being a full time carer to my adult son.
I say slightly unexpected, because I knew the day would come, but to suddenly find out in the space of three weeks that the placements you had envisioned would be available for the next three years, turn out to be so completely wrong you can’t quite believe what you were thinking when you applied on your son’s behalf, it’s a shock, trust me.
I now found myself the primary, full time carer for my adult son, and it changed everything. I have always looked after him from the moment he woke up to the time he went to school, and from when the school day had finished until he went to bed, but now, there is no break. From the moment T gets up, to the moment he goes to bed, I am looking after him – and it’s exhausting, physically and mentally.
Due to various elements of T’s condition, respite isn’t an option at the moment, so it’s up to me to be here and be present for him. Meeting friends for a coffee or a lunch during the week are no longer an option, and the only free time I get is when my husband comes home from work, or at the weekends.
I can imagine you reading this, wondering why I am writing a post like this – I mean, after all, you are thinking, this is meant to be a blog about books for goodness sake.
I guess it’s just that I want to try and tell people what it is like being a full time carer. It’s not easy, it’s full on, and it takes over your life. Suddenly, all the things you thought you wanted to do are put on the back burner, and honestly, I came very close to stopping running Years of Reading a number of times. How could I be a good blogger if I can’t find the time to read, to write reviews.
It can absolutely feel like you are being left behind if you can’t read and review. I feel guilty for all the books I haven’t been able to read, for all the reviews I want to sit down and write, and for all the times I can’t attend events or take part in bookish things because to be honest – T has to come first. It makes you doubt yourself and your love of reading. Am I still a book blogger if I don’t actually blog about books? In the ever increasingly growing and fast moving book blogging community, where do I fit in if my life changes and I am simply too exhausted to be part of it anymore?
The one thing that has got me through this huge life change is reading, and the bookish friends that I have made since I started blogging. Before I started blogging, I was always a little sceptical that you could have friendships with people you have never met, but they have been the very thing that have kept me going through the last year. I am so lucky to have such incredible friends in my life who have been there for me when I needed to vent, or to simply just talk about books for a while. Amanda (@bookishchat) has been the best bookish friend I could have wished for. We have both had a lot to deal with personally this past year, but as well as chatting non stop about books and Real Housewives, for me, having Amanda there to talk to, and us having created @twofondofbooks has meant everything.
Honestly? We don’t talk enough about what it means to be a full time carer. Of the immense isolation and loneliness that you feel, of how your world often shrinks to the four walls you have to live in for much of your day. It really hurts sometimes as you see friends and family doing all the things you wish you could, without a second thought or a whole load of planning and complicated strategies that you have to put into place before you can even step outside of the door.
Reading has always been my escape, my time away from reality, but over the past year it has become so much more. It is a snatched ten minutes of joy for myself when I am not needed, it is a chance to lose myself for just a little while in worlds like and unlike my own, and it is way to be constantly connected to those who love reading and books just as much as I do. I have never appreciated books, reading and the friends I have made in the bookish community as much as I do now.
If you have read to this point in my blog post, thank you. I felt I needed to explain just why writing and blogging has had to take a back seat for a while, and to share that if you are going through something similar too, I hear you, and we need to talk openly and honestly about what being a carer is really like. It’s hard, it can be relentless and like you are constantly trying to be heard, but I wouldn’t have it any other way.
All I can say is thank goodness for books, reading and the incredible bookish community I am so pleased to be part of, because I really don’t know what I would do if I didn’t have them, and my life would certainly be a lot less brighter without them.
Lots of love,
26 thoughts on “When Your World Changes Unexpectedly”
This was a moving and very honest post. You’re right; we don’t talk enough about the role of family carers, and what being a carer entails. I have had my own experiences of caring for family members, and so I think I do relate personally to at least some of what you are feeling. Anyway, I am sending good wishes. X
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Thank you ever so much Emily, that is so lovely of you to say so – and you are right we don’t talk enough about what being a full time carer means. I am sending you lots of love and thank you for your good wishes, it is much appreciated always xx
As a carer myself I get a lot of what you are saying. For me it happened overnight when my mum became blind. So my life & her’s changed with no warning. I’m on my own with no support from anyone so books have become an escapism for me. All the best to you.
Hello Theresa, it’s so lovely of you to take the time to comment on my post. I hear you about your situation and am sending you lots of love, and hope that books continue to help you escape if only for a little while. I am at @yearsofreading over on Twitter, so am always there if you need a chat. Lots of love xx
I’m glad you find some moments to read and write, and I’d be interested in hearing more about what you do. Have you read Say Say Say by Lila Savage? It might be interesting to hear your take on that novel, since it’s about a young woman who works as a “companion” to people who are handicapped in some way–only during the day, though.
Hello Jeanne, thank you so much for your kind words, and I think that I will keep talking about what I do, because as well as giving me a space to talk honestly, it also means that hopefully it resonates with others in the same situation too. I actually do have Say Say Say on my bookshelf, so will seek it out very soon. xx
Can I send you the biggest of hugs.
That blog couldn’t have been easy to write, or indeed post. I admire your bravery and if I’m honest, more than a little humbled by your honesty.
It sounds like you and your family have a tough time of it, and open communication like this can only ever be a good thing – thank you.
I love what you do, and I know that there are many out there who feel the same. There is often no greater pressure than the load that we put on ourselves and we all need to learn to be kind to ourselves – we are all happy to have you in whatever form that you can manage and I am damn sure that all of the publishers that you work with would agree.
You told me a long time ago, that it has taken a lot of work to get to where you are now and in my opinion, while on that journey, you have gained a huge amount of love and respect – love and respect that will only have increased after your post today.
Lots of love to you Clare
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Well that just made me cry a little bit Lisa! I can’t thank you enough for all the kindness and support you have given to me always, and for always taking the time to read and share what I write. I don’t know why I wrote that post when I did. I think a lot of it was I was feeling guilty for not being able to blog as much and participate on social media and in real life. Your words mean so much, and am very glad that the Bookish community brought us together. xx
Such a heartfelt, moving post, Clare. And you’re absolutely right, as a society we don’t talk about how it is for full-time carers. No matter how much you love your son, it must be very hard at times. As for blogging, I wish telling you not to feel guilty would stick! You do such a brilliant job championing books on Twitter, frequently adding to my tbr. Sending love and hugs xx
Thank you so much Susan – it’s such a difficult topic to raise without sounding like you are looking for attention and praise. It’s just trying to find the time now to fit everything in, and then you feel guilty for not being able to blog so much, and then you feel guilty for wanting to read and write when you look after your son. Thank you for your kind words – and you are ALWAYS adding books to my TBR, and are very glad that we have met xx
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Such a poignant post. It must be so difficult doing it full time with no respite. I am glad that you have Amanda, the bookish community and your snatched moments with books. The bookish community has your back, even if we can’t provide you with time. Sending you lots of love xx
Oh Jo, thank you so much for these kind words, it really means such a lot, thank you- and where would we be without each other and Real Housewives! xx
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Thank you for writing. We have a 20-year-old with complex special needs and when school ends for him in June 2023 we will have to figure out what the next steps are. It’s a LOT. I really appreciate your honest sharing here.
Hello Jeannie, you are so welcome, and am sending you lots of love. You are absolutely right, it is a lot, and I really hope that you have the right support and help in place for you from next year. I am @yearsofreading on Twitter if you ever want to chat. Am sending you love xx
Thanks Clare for your blog. I am part of a gtoup called CarersFirst who meet every month to talk about a book we have read. This month is Small Things Like These and we meet next Wednesday from 7pm until 8pm. Let me know if you would like to join us. You don’t need to have read the book.
Hello Peter, thank you so much for taking the time to comment on my blog, I really do appreciate it. Thank you so much for telling me about CarersFirst, it sounds brilliant. I hope that all is well with you, and have a lovely day.
I’m a new reader of your blog but this is a wonderful and heartfelt post that gets at what’s so special about reading and online communities! Thank you for writing it.
Hello Laura, it’s so lovely to meet you, and I am so pleased that my post resonated with you. Thank you for taking the time to comment, I really appreciate it. xx
Much love to you too Clare. Caring full time is more than a full time occupation and I wish you strength and fortitude as you move forward together xx
Thank you so much Linda for your truly kind words, and I think being able to find the strength and fortitude to go on is something I am learning every day xx
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This blog needs to take a back seat to you and your family. We’ll be here when you are able to post again, but keep on reading – since you already know helps.
Thank you so much Davida, and you are of course absolutely right. I have been finding it difficult to concentrate, but am sure it will come back soon xx
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Hello Clare. I have never commented on your blog until now, being one of the silent majority who read and appreciate your posts but remain shy of engaging in conversation. But I was deeply moved my your honesty in undertaking this enormously challenging commitment and wanted to offer my support . You are quite right that caring is deeply underappreciated in many societies, as is much domestic work, and that carers are poorly supported financially and emotionally. Where I live many services have been cut, leaving families to flounder in isolation and frustration. I do hope you find some glimmers of light in the days ahead. As for reading and blogging it should never be something you feel guilty about not doing. Someone once said to me ” Never let your pleasures become your pleasures ” A piece of advice that stopped me , at one point as I floundered in the day job, trying to earn a living from writing but that meant, despite the trials of a full-time job in medicine and various challenges in my family life, I could disappear into both reading and writing, even for a snatched few minutes as dawn broke. I found I couldn’t write for years sometimes, such were the demands of life and, for most of my working life , read sporadically but I never lost the joy and wonder. And, now that I have the time, I can revel in words and stories. I’ve found great connection in commenting on ” Book tube” and feel I have a bookish community without needing or wanting to be a creator. I participate in group reads across the globe, have found a solid reading buddy in Europe and hardly write reviews, as I don’t have the time. I’m sure you’ll find a way of keeping the bookish flame alive too. Take care
Hello Hester, I am so incredibly touched by your kind and thoughtful comment. I don’t know what to say other than your words have really resonated with me, and you are absolutely right in what you say. I honestly do not know what I would do without reading, and more importantly the incredible people I have found in the bookish community who have become such close friends. I am so grateful that you took the time to comment on my blog, and am so pleased that you have found somewhere you feel connected and that you continue to love reading and the joyful connections it brings. xxx
Thank you for sharing this Clare – I think you are wonderful!
Oh thank you Clair, that’s so lovely of you to say so, and I think you are wonderful too xx