Many people find me and my work through searching for individuals with experiences of caring. I’ve always been passionate about sharing what we went through with my dad to help others, mindful that when my dad was alive we never really knew much about the experiences of family carers in wider society. The day-to-day was so immersive, social media wasn’t the phenomena it is now and we didn’t even know that Carers Week existed, meaning our years of caring were often quite isolating and lonely.
With changing times, however, come many ways of learning about how other families cope (or don’t cope) with caring roles, and the subject of this blog is one of the very latest resources – Gina Awad and Tony Husband’s book, ‘United – Caring for our loved ones living with dementia’, which was published on 2nd June 2022.
A sensitive portrayal of the lives of families affected by dementia
‘United’ is a thought-provoking and very personal account of seven families’ experiences of caring for a loved one with dementia. Gina has curated it, letting the families have their own voices throughout the book, and rather than being very word-heavy it is illustrated on almost every page by Tony, making it a very accessible publication that doesn’t take long to read.
Don’t think, however, that because the pages aren’t packed with words that the messages are any less powerful. So much of what the families in ‘United’ have said resonated with me, and I’ve picked out a few examples to share with you.
The emotions we experience
From Kate and Fred’s story, Kate’s description of the emotional struggles so many carers feel (and that I recall SO vividly):
“I sometimes feel angry and guilty. Dare I think of respite? Am I being selfish? Doubts are constant.”
And then those profound moments when your loved one says something you didn’t expect:
“Those dark feelings of failure, ineptitude and inadequacy often recur. I asked Fred once:
‘Can you imagine anything worse than me as your carer?’
‘Yes, you not being my carer.’”
From John and Nobby’s story, John’s recollection of the decision to move his dad into a care home struck a chord again:
“Eventually, we realised Dad needed full-time care for his own good. But the guilt we felt was unbearable.”
Guilt is such a common feeling for families. It’s one we had, it’s one I’ve written about, and I know so many other families have experienced it too.
John and Nobby’s story also finishes with a line I have written myself so many times:
“Dad, I miss you.”
Post-diagnostic support, music, the arts and more
The similarities between my thoughts, feelings and experiences and those of the families featured in ‘United’ continue throughout the book.
From Penny and Emma’s story, the lack of post-diagnostic support that I have campaigned about for so long is laid bare again:
“The help we were offered was minimal. We were on our own with little information, help or guidance. It was scary.”
From Maya and Meera’s story, the power of music and the arts, a topic I’m hugely passionate about:
“We’d been introduced to a fantastic local dementia group. Mum loved it. She was the life and soul, chatting away to anyone who’d listen. She loved dancing and singing.”
“Mum loved painting and colourings. It gave her peace and freedom and captivated her. It was lovely to see.”
And there are so many other themes I identify with in ‘United’, like the importance of the natural world for wellbeing, the role environmental modifications play in helping a person to live well, how animals can support a person living with dementia, and from Sienna’s story, how she’s turned her personal experiences of caring into a professional career:
“My gran always used to say to me that ‘giving makes me smile inside’. I know exactly what she meant, as I feel a warm glow from within. I’ve found my purpose.”
Heartbreak… and the dedication of a daughter to her dad
From everything I read in ‘United’, two quotes from Kay, Ashley and Thomas’s story stand out beyond all others. Thomas’ insight into his dementia led him to say out-of-the-blue one day:
“You know I won’t be able to walk my girls down the aisle, or ever hold my grandchildren . . .”
That just made me cry. Did my dad think that too? Who knows. He never said it, but it was sadly true for him too.
And from Thomas’ daughter Ashley:
“Throughout my twenties, I’d been helping to care for Dad, but I wouldn’t have had it any other way. I love my dad . . . that’s what matters. We are UNITED!”
Anyone who knows my story will know why Ashley’s words are so powerful. As I said in my G8 Dementia Summit film:
“I’d have my dad back in a heartbeat, dementia and all that it brings, I would have him back because he was my dad, and you only get one dad.”
Profound and personal
I hope if you have any experiences of caring – be they current or former – that you’ll have a chance to read ‘United’, and as you page through to feel a little less isolated and alone. Bravo to Gina and Tony for a profound, personal and very emotional book, and my thanks go to Gina for including D4Dementia in the resources list.
The book concludes with Gina’s reflections on creating ‘United’, and I want to conclude this blog with Gina’s thoughts on living in the moment, something I tried to do with my dad and something I’ve written about myself:
“The greatest thing I have learnt over the years is the emotional connection we create when we can simply ‘be in the moment’ with our loved ones. I have felt this, witnessed this, and to me this is the essence of connecting in a meaningful way that goes beyond words.”