Dementia Support Line
Real stories
Dad refused help with his dementia until we reached a crisis point
Bill Mann CBE was a philanthropist, devoted to his family and eager to help those in need. But when Billy needed help himself for his dementia with Lewy bodies, Sarah and her family faced difficulty.
My dad, Billy, always had a twinkle in his eye.
His enthusiasm and drive for life was immeasurable. He gave of himself to others because he believed in people and causes. Once you had Dad behind you, there were no limits.
Dad also had a wicked sense of humour. That’s something I shared with him. We would often laugh together – not just at each other's jokes, but at our own!
Dad and I 1981 at our holiday house. I look very pleased with myself. And I was! Dad and I had spent the whole weekend painting the outside of the house, laughing and joking as we painted. I remember that clear as a bell and with love.
Fond memories with Dad
When Bruce, my twin brother, and I were wee, Dad would come and say goodnight. Every night, without fail, Dad would walk into the wardrobe instead of going out the door. We found this hysterical, every night.
On another occasion, we were on a long-haul flight and the wee boy behind my mum kept kicking her chair. After putting up with it for a while, Dad simply took his false teeth out, turned around and smiled at the boy. Mum's chair was not kicked again!
My beautiful mum with Dad in 1964. I love the way he is looking at Mum as if to say "Hey boys, she's with me!". Mum passed 26 years ago, sadly.
Dad was known for his financial acumen. He had a very successful business, but he always made sure his children were taught the value of money. He gave me and my brothers, Ainsley and Bruce, our pocket money on an annual basis from the age of 10.
Dad pledged to double any leftover pocket money at the end of the year. Needless to say, my brothers, who inherited Dad's good sense with money, had some leftover. But not me; I’d inherited a love of shopping from Mum!
Spotting the signs
Dad started showing signs of memory loss in 2013. Nothing major, but enough for us as a family to question it.
We took Dad to the memory clinic and although he failed to answer a few questions, they – and we – were satisfied that it was nothing to worry about.
However, over the next couple of years, it became clear that indeed there was something to worry about.
Dad refused any help
By early Spring 2017, we knew we needed to seek professional help and care for our lovely daddy.
But as with many people living with a form of dementia, Dad refused all offers of help, other than my daily visits.
Dad refused to believe that there was anything wrong.
Like so many others with dementia, Dad was able to mask (or so he thought) the true extent of the problem.
We decided we would have to wait for a 'moment of crisis'.
Dad with his grandchildren taken at Christmas in 2007. His smile says so much, I think.
Reaching a crisis point
In the early hours of Tuesday 21 November 2017, that moment of crisis came.
Dad called me rambling and sounding very agitated. Bruce, my twin brother, and I responded immediately.
Our darling Dad, who gave so much to many people in his life, left his home, very reluctantly, of 32 years. Before entering his residential care home, Dad began a stay in hospital while he waited for a diagnosis.
Dad had a lot of hallucinations and a brain scan confirmed it. He was diagnosed with Lewy bodies dementia in 2018.
Dad wasn't ever frightened by his hallucinations. He believed them to be true. As they were not scaring him, I went along with it for the whole illness.
I soon realised that the hallucinations were part of his reality. To contradict or to correct him would have upset him.
Unfortunately, Dad’s dementia did make him agitated a lot of the time. Before dementia, Dad was the calmest, most gentle man.
Someone once said, “Everyone who knows Bill Mann, likes Bill Mann”. I think his devotion to charity, sports and the arts emphasises this, but to me, he was just Dad.
New to the challenges of dementia
The world of dementia was completely new to me. I had never even heard of dementia with Lewy bodies.
It was very overwhelming and at times very upsetting. Dad fought the disease (and me at times) every step of the way.
My dad was a determined man all his life.
He championed championing those less fortunate and charitable causes most of his life. Why should he approach this disease any differently?
In a funny way, it made me love him all the more. He could still show that aspect of his personality; something I believe everyone living with dementia does, right up until the end.
Proof if ever you needed it of the power of pet therapy! Dad loved having 'Billy', the therapy dog (left) and Lottie (right) who was always so calm and all the residents loved her.
Dad was in residential care for two years and one day. He continued to fight his Lewy bodies dementia until the bitter end, the same way he would anything else in his life. Dad passed in my arms on 17 December 2019.
’Because I know who he is’
That was always my answer when people asked me why I visited my lovely dad every day if he didn't know who I was. I knew who he was. My dad.
This was the inspiration behind the title of the book I wrote as a result of Dad’s illness. It was a form of catharsis that, to my delight, was published in 2021.
Although it is sad, it is a story of love. The bond between Dad and I was unbreakable.
It is also uplifting and offers hope to those embarking on, or already experiencing, that journey. I hope it helps to show others how stepping inside the head of someone with dementia can help you to best cope with it.
The book also highlights how good residential care can be. I volunteer two days a week in Dad’s former residential care home, and I love it! I was also honoured to be given the role of their Family Ambassador. It was a massive privilege to be asked.
I learned so much about dementia whilst Dad was there and I’m still learning every day.
The care and support Dad received, and the care we as a family received, was second to none.
Dad and me with my children, Max, Rosie and Molly (and Lottie the dog) at Christmas 2018. Family means everything.
A proud daughter
The impact Dad’s dementia had on me is immeasurable, both in a sad but also positive way.
To see someone so bright losing his ability to function is heart-breaking. But Dad also taught me so much about family history, because that is what he COULD remember.
Dad taught me so much about myself, that I do have the ability to cope in the saddest of times because he needed me to.
Dad's dementia has also brought me to where I am today and that has to be a blessing.
Dad was a loving, fun Dad who did so much, not just for his family, but the impact he had on so many others is amazing. I couldn't be prouder of him and his life devoted to others.
He was also one of life’s doers. He walked the walk, starting his own charitable foundation in 1988 with my mum, The W M Mann Foundation, which has given millions of pounds away to those less fortunate than him.
This culminated in him receiving his CBE for all his philanthropic work on 15 December 2017, the day before he entered residential care. That’s the photograph on the front cover of the book.
Our smiles in the photo say it all, I think… what a wonderful Mann.
Because I Know Who He Is by Sarah Smith is published by Olympia Publishers. It is available to order online from Amazon and all major bookshops.
Help with dementia care
We have advice on getting help when caring for a person with dementia. This includes information about getting support from your GP, health and social care professionals, respite care and how carers can look after themselves too.