Published by: Wellcome Collection
Pages: 208
Date released: 03/06/2021
Date read: 04/06/2021
As our population ages, more and more of us find ourselves caring for parents and loved ones – some 8.8 million people in the UK. An invisible army of carers holding families together.
Here, Kate Mosse tells her own personal story of finding herself a carer in middle age: first, helping her heroic mother care for her beloved father through Parkinson’s, then supporting her mother in widowhood, and finally as ‘an extra pair of hands’ for her 90-year-old mother-in-law.
There is a story about the gentle heroism of our carers, about small everyday acts of tenderness, and finding joy in times of crises. It’s about juggling priorities, mind-numbing repetitions, about guilt and powerlessness, about grief, and the solace of nature when we’re exhausted or at a loss. It is also about celebrating older people, about learning to live differently – and think differently about ageing.
But most of all, it’s a story about love.
Before I get into this review, I will say this is a very personal review; possibly the most personal I have ever written. Whilst at the crux of it, this is a review of a book, it is more a review of how this book has touched me.
I am going to start by saying I insist everyone read this. If I had the resources, I would love to be able to purchase every copy of it and just hand it out to everyone I meet on the street. I knew just 50 pages in that this would be the most important but heartbreaking book I could ever read. It was very personal, not just to me, but to the 8.8 million other carers in the UK. It’s a hard book to read and I often found myself blinking away tears so I could get to the next sentence, but that’s part of its glory. Being a carer is hard. And that’s the understatement of the century. It’s raw and upsetting and tiring and anger-inducing and emotional and fucking hard. This book doesn’t sugar coat that. It explains the heart wrenching nature that is to care for and watch a loved one deteriorate and die before your eyes, whilst simultaneously feeling like you could do more to help them.
In January 2016, aged 22, I resigned from my job as my Maternal Grandmother was showing signs of illness. This very quickly developed into full-blown vascular dementia. Between myself and my mum (plus other relatives, and 4-times-a-day visits from paid carers), we spent every day caring for her until she moved into a care home in the May, before passing away in the July. My Grandmother was one of my closest friends. Growing up, she was like a second Mother to me; I frequently stayed round her house and she taught me to read, often climbing up one her lap before I could even speak, demanding she read me a book, and she is where I get my love for reading and writing from – a gift I cannot thank her enough for. Watching her go from a highly intelligent and independent woman (my Grandmother had died 15 years previous), to a shadow of her former self, with hardly any recognition of anyone around her, and with no speech, was no less than heartbreaking. If I’m honest, I’d rather not have had to take her to the toilet, help her get dressed when she’d forgotten how, to stop reminding her how to dial the phone after receiving 21 phone calls in one day from her. But it was a privilege to spend so much of her last days with her, even if it wasn’t in the Grandmother/Granddaughter capacity I wanted.
Then eight months later, aged 23, my father was diagnosed with stage 4 cancer. My father was my best friend. I was 100% a daddy’s girl. I continued working full-time through his illness, but also helped care for him. We never had ay professional help until the final 5 days of his life which he spent in the local hospice (which we so, bizarrely, desperately missed when we no longer had reason to go). For nine months (diagnosis to death), we helped him get out of bed, sort out his medication, clear up after him after a bad reaction to chemotherapy, let him sob on our shoulders, took him to appointments, discussed funeral plans, helped him to get washed and dressed. Caring for him became a second job. Never sleeping deeply because you were waiting for him to throw up, waiting for the phone call when he was admitted to hospital, spending every waking hour sat by his hospice bedside as he began to slip in and out of consciousness. My dad was a big man, was overweight, with a larger-than-life personality. A gentle giant. And in the last few days of his life, he was gaunt, and yellow and wasting away. This was the most heartbreaking thing of all. I would not take back a second of helping him through his darkest days, but I wouldn’t have wished for a second of it. I had to put aside my grief and my anxiety and become the parent on one too many occasions. I miss my dad terribly but wouldn’t want him back for a moment if it meant he had to suffer again. People have often questioned me when I’ve said that. There’s a line in the book that Kate writes that I think explains it perfectly:
“I missed him all the time but without ever wishing he was still with us.”
Like Kate, my father had been in so much pain, and struggled with even the simplest things, and his body had finally had enough. Those moments after his death might have been the hardest for us to live through, but it was the most peaceful of his. He was no longer suffering or in pain, and whilst grieving, we could start to relax.
And then, in early 2019, my Grandmother’s neighbour and best friend (who had also helped care for her in her dementia days – in her 90’s we referred to her as the world’s oldest carer) started to deteriorate. She had always been fiercely independent – on one occasion she simply got on a bus and let it take her anywhere, she ended up in Southend. But she began having falls and breathing difficulties and it turned out she had heart failure; not surprising at 95 years old. But very quickly, she went from a fiercely independent, fairly sprightly woman to someone who couldn’t feed herself, couldn’t stand or hold conversation. After a while, she chose to move to a care home where she was cared for very well. At the end of 2019, I spent 3 hours with her in A&E, and for that entire visit, I was Sue from M&S. I don’t know a Sue from M&S and I didn’t know she did either, but to contradict her would cause more distress, so I went with it. Thanks to the Covid pandemic, that was the last time I ever saw her; she passed away in July 2020. She became a surrogate Grandmother to me after mine passed and was so loving and funny and smart and such a joy to be around. I never felt I was “caring” for her as such. I was just visiting an elderly lady, and enjoying it thoroughly, even though some days were harder than others.
Many people reading this book will have their own caring stories I’m sure, but they are my main ones. Three intense caring responsibilities for three of the closest people to me in the space of 3 years.
Another line that Kate says in the book was “It’s hard to write when you heart is breaking”. This touched me so much I had to take a phot oof it. Finally. Finally, someone wrote down how I feel.
I have been writing ever since I can remember, and whilst I am at 27, as yet unpublished, I try to write every day. I am working on fiction books, non-fiction books, and children’s books. Any excuse to write. I think that’s why I started this blog so I could write, and about books. Over the years, my therapist has been able to chart my depression and anxiety levels by whether I am reading or writing. If I haven’t been able to focus on a book, or I haven’t written a word in a fortnight, she’ll know I’m struggling. When I tell her I’ve finished writing a chapter, or picked up a new book, she knows I’m on the up. And after my Grandmother and Father died, I felt I couldn’t do either. Not being able to read whilst grieving is a common thing, so didn’t concern me too much. The most heartbreaking thing for me was I couldn’t write. Writing is how I cope with things. When in doubt, pick up a pen and just write. Write anything. And yet I couldn’t get any of the words from my head to the page. There was too much grief, too much sadness, too much anger, and at times, not enough of anything, just numbness. I couldn’t write about anything because no words could quantify my feelings. I only knew my heart was mending itself when I could find the words that meant something to me again. And it’s very difficult to explain that feeling to someone who doesn’t feel that way about words. So, to find an author who can perfectly describe my heart’s experience is truly a blessing.
Whether you have been a carer, are currently a carer, or think you may have caring responsibilities in the future (if you’re a woman, you have a 50:50 chance of becoming one), this is the most important book you could ever hope to read.
Books By Your Bedside 