Or some of the books I was able to find
I was surprised when I realised how few books or blogs I could find that reflected the experience of what it is to have a parent with dementia.
When I gave up alcohol a couple of years ago, all I could read for a while was ‘quit lit’, memoirs by people who had given up drugs or alcohol. There were MILLIONS of them to get my hands on as I weaned myself off red wine by drinking up their stories every evening instead.
There are so many books about the practicalities of dementia, like Oliver James’s excellent Contented Dementia: 24-hour Wraparound Care for Lifelong Well-being. And there is the amazing Wendy Mitchell, who has written about the experience of having dementia herself.
But given how common dementia is becoming, there still doesn’t seem to be much of a body of work from the partners, relatives, or friends of the people with dementia.
I was particularly interested in finding accounts that explore what it means to watch your parent go through dementia, changing into someone you don’t always recognise (and who doesn’t always recognise you), changing from caregiver to cared-for.
A few years into this, I’ve found several books that I’ll tell you a little about here. This isn’t going to be a list of ‘Ten best books about having a parent with dementia’ because I actually don’t know about ten, and that’s a big reason why I’m writing this blog at all.
I know what comfort I’ve found in other people’s words when going through a difficult, life-altering experience like this one I’m going through at the moment. I hope my words can provide someone with hope or at least recognition about this subject that feels so little discussed or portrayed.
Anyway, here are three books that I found brought me a better understanding of what has been happening and made me feel less alone.
Comment below this post if you have any other recommendations for me, as I’d like to read them. I won’t say I’d love to read them because, let’s face it, this experience is hard to face. Sometimes you just want to get lost in a book about anything else.
This Ragged Grace: A Memoir of Remembering and Forgetting by Octavia Bright
It took me until a couple of years into this to pluck up the courage to even pick up a book about dementia. It all felt too raw, and I was struggling to look reality in the face. Then one day in my wonderful local library, I caught sight of This Ragged Grace, and I was brave enough to borrow it and read it.
Bright’s writing is thought-provoking and thoughtful. It spoke to me as it’s not just about her father having dementia but also about her own journey to sobriety. The book is a fascinating exploration of how her father’s forgetting runs alongside the gradual journey to remembering that sobriety entails. The need to reckon with yourself and your past.
She wonders if part of her realised that getting sober would be necessary to deal with what her father’s dementia brings, and I’ve sometimes wondered the same. Not being able to escape the sadness through the oblivion of alcohol is hard but necessary because you can’t be dealing with all this with hangovers and illness and shame in the mix.
The ending is absolutely heart-breaking and left me sobbing, reminding me of the horrors of the height of Covid for people in care homes, where the virus was rife but families weren’t even allowed to come and hold their loved one’s hand for the last time before they died. I still can’t believe that was allowed to happen, how inhumane it all was for the dying and their families.
Shobna Gulati’s Remember Me? Discovering My Mother as She Lost Her Memory
The next book I want to mention is Shobna Gulati’s memoir. As well as being an entertaining account of Gulati’s life story and incredible career as an actor and performer, the evocation of her mother’s dementia and of being her mother’s carer is beautiful, sad and so clear-eyed.
What interested me too – and what I have seen in my own family – is the toll her mother’s dementia takes on the relationships Gulati has with her siblings, all of whom are estranged at the time of her writing.
A parent’s illness does seem to crack open families, and I think this is especially true of dementia, which doesn’t just demand physical caretaking but also dealing with your parent’s mind and at times personality changing before your eyes.
Gulati draws insightful comparisons between looking after your child and looking after your parent. While we know more about how to care for a child, caring for a parent with dementia is unchartered territory, an often alarming switch from a person who used to take care of you. While I can follow endless Instagram accounts giving me parenting tips, I often feel lost when wondering how to deal with some of the things my father does and says.
Harry Dodge’s My Meteorite: Or, Without the Random There Can Be No New Thing
Finally, I want to point you in the direction of Harry Dodge’s My Meteorite. It left me thinking about so much more than dementia – the nature of art and time and technology and humanity – but Dodge is also deeply insightful in the sections that deal with his father’s dementia.
Dodge is able to dive into all sorts of things in a way that is surprising and new and somehow recognisable, as seen in his incredibly vivid description of his father eating some oatmeal (I’m not sure if copyright law allows me to quote the whole section but I would if I could!).
He also charts the anger and frustration of feeling that doctors and nurses don’t seem to be taking the illness seriously enough, the endless waiting for tests as things seem to be crashing down around you, the hard decisions that need to be made about the person’s care, the falls, the worrying if they’re happy in the care home, the guilt as you leave them there, the guilt that you might not have always made the right decisions, the endless decisions as the situation changes and changes again.
What’s particularly well explored is the way in which time and life have completely changed for the person with dementia. We tend to find ourselves judging whether they have a good quality of life by the standards of our own lives as people without dementia, but it’s a completely different existence, a different experience of the world and of time that isn’t necessarily unhappy or empty even if it might appear like that. Dodge’s account is always curious, never sentimental, always insightful.
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