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"Memories are like the twinkles of stars… sometimes bright and sometimes dim."
When Grandad was younger, he was an astronomer, and he was full of stories about the stars. But now he’s getting older, he’s starting to forget things including the stories that he has always known so well, and even his granddaughter’s name. But the love between them doesn't dim.
After experiencing her mother's dementia Frances Tosdevin felt drawn to write a picture book reflecting the realities of a dementia diagnosis. Of the mixed emotions that it inspires, from joy to frustration, despair and devotion. And the difficulties of watching a loved one slowly slip away. Here Frances talks about her mother, and how her touching picture book Grandad's Star evolved.
As a child in the 60’s and 70’s, I was obessed by the space programme, and my family followed the Apollo space missions with enthusiasm and wonder. I even wrote to NASA in 1969, asking for a signed photo of Neil Armstrong (the first man on the moon), and to my incredulous delight, one day a large envelope from NASA— addressed to me— arrived in the post— inside was a ‘signed’ photo of Neil Armstrong. I could not have been happier, or prouder (or more surprised)!
When my elderly mum developed signs of dementia in her nineties, she became forgetful, and also a bit neglectful of herself— for instance, she didn’t eat properly and her personal care suffered. This was due to her short-term memory declining. At first, this was not a major problem and we supported her to live ‘independently’ in her own home. However, independent living became impossible after a fall, a spell in hospital and a sudden worsening of her cognitive abilities— meaning we could not safely leave her alone at any time. As a family, we made the difficult decision that moving our mother into a care home would be for the best. She adapted very well to this move and was soon enjoying a busy schedule of crossword mornings and Scrabble afternoons; there was always something to do and someone to do it with.
At first, she lived in the ‘mainstream’ part of the care home, but as her short term memory deteriorated— and she became more tired and less able to join in with things— she was taken across to the dementia unit during the daytime. Eventually, we were told that she would need to move into the dementia unit as a fully-residential guest. This was quite tough for us as a family, as we felt that her dementia— although debilitating— was at the milder end of the condition, since it presented mainly with severe short - and immediate - term memory problems. Gradually, we noticed that if we took her out on visits anywhere, she seemed unsettled. I knew things were really bad, when my husband and I took her to John Lewis— a shop she adored— only to find that she sat on her walker looking frightened and confused for virtually the whole visit. This was not how my mum of a few years before would have behaved! However, during the inevitable cognitive decline that followed, at no time did my mother forget who we all were, and she always knew (and accepted) that she was living in a care home. Compared to many of her peers, she was pretty clued up, and sometimes couldn’t understand why her fellow-residents weren’t.
I’ve calculated that I visited my mother around 1400 times whilst she was in the care home. Over nearly five years I saw many people (both in the main care home setting and subsequently in the dementia unit) who were affected by dementia— from mild memory loss to full-blown Alzheimers. I also saw how carers and specialists found ways to connect with them, and how simple things like playing an old film— or a song from the past — could connect with people and ‘awaken’ them. People who had been slumped and sleepy, were suddenly sitting up and engaging with films, music and songs. In fact, music felt like a magic power—a way to cut through the confusion of dementia and connect with the young and vibrant soul of the person inside. Words from songs many decades old would trip faultlessly off the tongues of residents who were otherwise hard to reach. It was a miraculous transformation…until the music and the song ended, and the magic wore off.
I also learnt how to respond with empathy to residents of the home— for example, what to say to help calm a lady in her nineties who is agitated and pacing up and down because she is convinced that she needs to collect her new baby from the hospital. I had this exact conversation with a lovely lady called Jane… and I was able to dispel her anxiety — something I could not have done if I hadn’t already spent so much observational time in the dementia unit.
It is true that in the dementia unit there was pathos and sadness—but there was also much humour and happiness. Whilst some people were locked into a dementia characterised by withdrawal and even aggression, others were constantly happy, laughing and joyful. It felt very cruel that this was all down to changes within each individual’s brain. It was as if, even after a dementia diagnosis has been meted out, a cruel lottery was at play. We were very lucky in that our mother retained all of her personality and “self”— it was simply that she had no idea what she had just done, eaten, or who she had seen. She was forever living in the present moment. For which we were all, actually, very, very grateful— it could have been so much worse.
Because of these personal experiences of dementia, I knew I wanted to write a picture book about dementia. But I needed a way into the story, or a ‘hook’— and this evaded me for a long time. Unfortunately, I suffer from historic and persistent insomnia. During bad nights, I refer to the stars as “my friends, the stars”— because, when the world is sleeping but you are not, they are a constant, kindly and non-judgemental presence. They are there when I need something to make me feel less hopeless; less useless; less out of kilter with the rest of the world— with those lucky people who find sleep at the right time in the night.
On one such night of not sleeping, I went to the window once again. I greeted my friends, the stars! In the middle of the night, for no good reason whatsoever, I was trying to recall one of two things… either the Latin botanical name of a plant (I am a stickler for unambiguous classification and love learning all the Latin names) OR the name of an occasional presenter on Gardeners’ World (can you tell I have a ‘thing’ about plants?!) … only I couldn’t… I couldn’t recall the Latin name/presenter’s name that I was trying to bring to the foreground of my mind… I KNEW that I knew it… and that I’d recall it as soon as I got up in the morning.
But at 03.30 am, could I recall it? Nope, not at all. I could not. I felt beaten and useless. I looked at my BESTEST star friend, you know— that really bright one— I’m not certain what it’s name is but perhaps it is Venus? — I looked at it and thought: memories are like the twinkles of stars… sometimes bright and sometimes dim. And in that millisecond— in that dark, lonely, pit of a sleepless night— I knew I’d had an “Aha!” moment, and found the way into my dementia story. Several things had collided in one starlit moment: my desire to write a dementia story, an especially bright and twinkly star, and my night time failure to recall something that I knew that I knew!
And a bit like the Big Bang, I had the beginnings of a story…
Grandad's Star was illustrated by Rhian Stone, and it is hard to believe it is Rhian's debut book. She has been shortlisted for the Klaus Flugge Prize 2025 which is a special award given to the most promising and exciting newcomer to children's picture book illustration. You can find out more about the Klaus Flugge Prize here - the winner is announced on 11 September 2025.
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