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carolineboxall

Why write a story about dementia?

Updated: Mar 4, 2021


Some time ago my mother-in-law was diagnosed with dementia. It was very sad. The ‘Grandma’ we all knew was disappearing before our eyes and she started to do things which were becoming unsafe. One night she woke the neighbours, shouting that there was a fire. Thankfully there wasn’t but thinking about her wandering into the road in the middle of the night was not a happy thought. First we found a carer who could live-in but it soon became apparent that one carer was not enough. We sadly admitted to ourselves that it was time for her to move to a care home.

We did the rounds and found plenty of places that were wrong for Grandma. Too dirty, too noisy, too dark, too few staff, too cabbagey-smelling.


Grandma fell ill very suddenly and had to spend a few weeks in hospital. We had to find somewhere for her to live. In fact, the hospital refused to let her out until we found somewhere.


Eventually we found a home not too far from us which was acceptable. A couple of years later we moved her to a new place which was more like a five star hotel, also near us, and finally we were happy that she was living somewhere she would be well cared for.


Grandma was always a character. She remained a character even after she almost totally lost her memory. She had become a different character by then but her face always lit up when we visited even if she didn’t remember who we were. We listened to stories about her childhood that even my husband hadn’t heard before. We will never know if the stories were true but they were entertaining all the same.


From the time Grandma moved into the first care home up until the day she passed away four years later, she lived with the most extraordinary people. We are a big family and with seven of us crowding in to visit Grandma, we soon realised that the other patients or residents could be lent a ‘spare’ visitor to chat with for a few minutes. We got to know the other ‘Oldies’ as we affectionately called them, and we became very fond of them.


There was Irish Mary who kept trying to escape, Frank who used to fly Spitfires and had a terrible temper and Basil, the sweet old retired school teacher who had no idea who he was but smiled all the time and only ever said three words: “I don’t know.”


It was tragic that these fine people should be reduced to such shells of their former selves but they were all magnificent in their own way. They taught us lessons we could have never learned without having met them and I am so glad we did. My children know about dementia and how to speak to people who have forgotten everything except for their earliest childhood memories. They have respect for the elderly, no matter how reduced their capacities.


My youngest child, my son, was particularly enthusiastic about visiting the Oldies. Aged five he had no inhibitions and no expectations. Every person he met was equal in every way, whether it was a resident with severe dementia or one of the carers. He spoke to them all very loudly (Grandma was deaf, Grandma lived in the home, therefore everybody else in the home must also be deaf). He would sing to them, dance for them and would even get them to sing or dance along with him. We could all see that this little boy was a joy and a breath of fresh air for the residents. The old people would wave to him, try to give him their cakes or stroke his hair until he’d had enough (which wasn’t long!)


When my son was a bit older he started piano lessons. His teacher was surprised that he wanted to learn Christmas carols in September but he had a reason. From November, well into March, every time he visited Grandma he sat at the piano on the dementia floor and played “In the Bleak Midwinter”. He made lots of mistakes but all the residents joined in and paused with him as he tried to find the right note. Despite the resulting cacophony, it is a heart-warming memory.


When Grandma passed away we were obviously all devastated. My son had an extra sadness because he wouldn’t see all his old friends at the care home anymore. It started me thinking about what it would be like for a young boy to live in a care home all the time. Grandma and the other residents had such wonderful personalities and quirks, they would give me all the ideas I needed for a story. And so the book I had always wanted to write (but never knew what to base it on) was handed to me on a plate.


It took three years to write It’s Raining in Moscow and I Forgot my Umbrella and I have had wonderful feedback, not just from children, but from adults who say the story has helped.


I’m happy that Grandma lives on as ‘Gran’ in the story. Billy is based on my son and of course I couldn’t leave my four daughters out of my first book, so they all appear too. It’s a bit of a roller-coaster of an adventure but the story is an uplifting one which aims to show how dementia is not something to shy away from.


It is sad but, as with everything, it’s how you cope with what life throws at you. You can turn most things into a positive if you have the right attitude.



"If you're considering getting this book then don't hesitate BUY IT. Having lost a grandparent to dementia I found this a remarkable book on how this never easy subject was handled and presented in such a special way. Anyone can read this at any age. I loved reading it and was left wanting more at the end. And yes I did shed a tear or two. I hope there will be a sequel one day. One of my best reads this year."


5 opmerkingen


neelam
25 jan. 2021

Your blog is so interesting and really does put a positive light onto what is otherwise a heavy subject. The characters in your book show how to make the best of the situation, for everyone. Amazing. I thoroughly enjoyed reading it.

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carolineboxall
30 okt. 2020

Thanks so much stubbs.s! I am so sorry to hear about your husband. What a good idea to write down your emotions - I bet they would make great poems. With my mother-in-law and the other dementia sufferers I met through her, some of the things they said were so poignant. Sometimes the honesty and childlike innocence were very moving.

Keep writing!

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stubbs.s
28 okt. 2020

Sounds very good. Would love to read your book. I am a carer for my husband. I started making a story about the feelings on the diagnosis, but still on the journey of highs and lows happiness and sadness and all the other mixed emotions. Your book sound inspirational


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jamiesond
20 okt. 2020

What a wonderfully written blog and a great idea for a book. Can’t wait to read it!

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backyardfooty20
18 okt. 2020

Love it! Looking forward to reading more of these!

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