A Hartlepool man who was diagnosed with Alzheimer’s just months after his mother died from the disease has published a book to help others know they are not alone.
Michael Booth, an involvement member with our Trust, was only 46 when he was told he had dementia. Now, five years on, he gives talks around the world on the condition.
“The diagnosis was a real blow, especially as I’d just watched my mum go through it. One of the hardest parts was to tell my dad that, after losing his wife to dementia, I had it too,” said Michael.
“It felt like a kick in the stomach at the time, and still does. It’s a terminal disease, there is no cure, so it was a case of coming to terms with it. That’s why I started writing the book.”
Loss and sadness
Michael was born in Hartlepool but moved to South Africa with his family as a child. He returned home to help out when his grandfather developed signs of dementia – and stayed on.
“Although it was a sad situation, my grandfather was in his 80s at the time – an age when you might expect people to have some loss of memory function,” said Michael.
“He never got a formal Alzheimer’s diagnosis, but he did have the symptoms. None of the family realised back then that the disease could be genetic.”
Michael’s mother, Christine, started struggling with her mental health not long afterwards, when she was in her early fifties. Initially, her loss of speech was put down to stress and anxiety.
Eventually, aged 55, she was diagnosed with young onset Alzheimer’s – by which time she couldn’t speak or identify objects and was losing her memories quite rapidly.
“I helped my dad care for my mum and, as time went on, I found myself forgetting where I was going, forgetting my words and having problems with my balance,” said Michael.
“My mum was in palliative care by this time, and I put it down to stress. But one of the Trust mental health nurses caring for my mum suggested I get tested, so I did.”
Balance and speech problems
Christine died just before the first Covid lockdown of 2020, at the age of 65. Only a few months later, Michael received his own devastating diagnosis.
“I was 46 at the time – an age where I thought I had a whole future ahead of me, until I didn’t. Strangely, the peace of the Covid lockdowns helped me come to terms with my health,” he said.
“Lockdown gave me a chance to reflect and research. I had lost my driving licence with the diagnosis, couldn’t work and it was a lot to deal with, but my wife was such a great support.”
Michael, a former project manager, found that his speech and balance, rather than memory, were affected at the start of his illness. He often forgot, or got stuck on, words while talking.
His balance issues also landed him in A&E with broken bones on several occasions, which prompted The Bridge dementia charity in Hartlepool to suggest he move to assisted housing.
“After the move, The Bridge asked me to write about my experiences,” said Michael. “I thought about it for a while and, once I started writing, I never stopped. That work has become my book.
“Writing gave me something to do at first, helped keep my brain active – then I realised it might help other people in the same situation as me. I really hope it does.”
Hoping to help others
Michael has drawn on the expertise of those he has met while giving talks and volunteering for charities to ensure his book, Dementia: You are not alone, is both factual and practical.
It is now available on Amazon and has been written as a guide to the support, help and advice which has helped Michael on his dementia journey.
“I’d only ever written work reports before, so this was a real change of direction for me. I just hope the book sparks conversations. It’s so important to be open about dementia,” he said.
“Holding the book in my hand for the first time was quite a surreal experience. It was a special moment. I just hope that people read it and that it helps them.
“I want people living with dementia to know that it’s not the end. It might feel like it is, but it’s not. I’m still me. I have a few problems, I struggle with a few things, but I’m still me.”
Inspirational work
Gemma Gray, an involvement and engagement facilitator who works with Michael on projects within our Trust, said:
“Michael is a well-respected member of our participation group in Tees. He uses his experience to continuously help others and our services.
“We are very grateful for all that he has done, and his book is testament to the person he is – an inspiration.”
