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!

Sarah as a child with her father in 1981 smiling

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!

A black and white photo of Sarah Smith's parents in 1964

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'.

Bill Mann pictured with his grandchildren on a staircase

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.

Two photos of Bill Mann pictured with a toy therapy dog on the left and a black dog on the right

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.

Our dementia advisers are here for you.

’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.

Sarah with her dad, Bill, as well as Max. Rosie, Molly, and Lottie the dog

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.

Front cover of Sarah Smith's book Because I know who he is

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.

Advice for carers

15 comments

Add a comment

So beautiful! On contrary I’m also curious about how those who didn’t have a positive nurturing bond with the parent who suffers dementia, and the even tougher journey both the patient and caregiver have to endure?

Although I have not yet had chance to read the book I love the sound of it , even from the warmth of its title and this beautiful article.
I would like to describe here some of my father's hallucinations, as a probable part of Lewy body dementia ,so that readers can glimpse a little more of the changes that can happen . Sometimes dad would see wonderful things in his garden and be happy , at others he would hear and see water running everywhere and try to take a spanner to a radiator, or try to throw water over a fire when there was not one .At times it seemed like he had dreamed an (unlikely ) event but utterly believed it was true .For example, one night he was shouting for "Help". When I went into his room to see what was wrong he said that "In my book you are lying dead in the road out there" . One night he woke up firmly believing there was a car stuck in mud outside , with its wheels spinning , and he needed to go out to help . This was in a long spell of very dry weather and he was dressed in very little. I think he may also have had a problem smelling things that were not there, though his sense of smell in daytime was poor. Perhaps the worst episode was after he had become distressed at the TV News when a schoolchild had been stabbed. His delusions/hallucinations became terrifying with men with guns in every room at doors and windows , even then he seemed more concerned for me than for himself .

A beautiful heartwarming read that shows how much love there was between Sarah and her dad Bill. A very realistic account of a Dementia journey. Sometimes funny sometimes heartbreaking but overall a very memorable read. It would make a great film!!!! 🥰

I love the special moments when something happens that you haven't seen for a while. When we take my husband's step-father out, he points out how beautiful the day is (every 5 minutes of course).

A story of undeniable and genuine love. It confirms the unmistakable bond between a father and a daughter and in turn a daughter and her father. The love of family is insurmountable. Such a beautiful story!

This is a very encouraging book, detailing in a very personal way, the journey of a father and daughter through the highs and lows of dementia. It is beautifully and sympathetically written and I imagine it will bring comfort to those in a similar situation. Many people including myself, will identify with so much of what Sarah has written. I have known Sarah since she was ‘the wee girl next door’ and I can attest to the love and devotion she shared with her Dad.

Wish to do something to help sufferers.

Hello Rosemary, and thanks for your comment.

It's wonderful to hear you are interested in helping people affected by dementia.

We'd recommend speaking with someone from our Supporter Care team on 0330 333 0804 (open every day between 8am and 10pm). They can answer any questions you may have about the various ways you can get involved.

You can also browse our website for further information on:
Volunteering - https://www.alzheimers.org.uk/get-involved/volunteering
Fundraising and events - https://www.alzheimers.org.uk/get-involved/events-and-fundraising
Campaigning - https://www.alzheimers.org.uk/get-involved/our-campaigns

Thanks again for your expression of interest - we hope to hear from you soon.

Alzheimer's Society website team

Dear Rosemary, firstly I greatly commend you on your wish to help those people living with dementia however I would like to politely pick you up on the language used. I think I might have used the same term myself in the past & the media & health care professionals constantly use it. I would highly recommend reading the 2 inspirational books 'Somebody I Used To Know' & 'What I Wish I Knew About Dementia by someone who knows' by Wendy Mitchell who was diagnosed with young-onset dementia at the age of fifty eight. She states that "for so long the word 'dementia' has been feared & when people hear the word, they immediately skip to the end stages. But it has to have a beginning & a middle -with so much life to be lived." She also writes in her new book about the importance of positive language to reduce the stigma of the disease & states "My least favourite word is 'suffer' & unfortunatelythis is the one that is used most often to describe someone living with dementia - a sufferer. I always challenge this, particularly when I'm speaking to trainee nurses heading out into the world to work with people who are living with dementia. 'Do I look like I'm suffering?' I ask them & they have to admit that I do not. If you were described that way, day after day, you might start to believe it." Please don't be offended by my reply as obviously you're not aware of the importance of the language we use (the majority of people aren't & I wasn't) but that's why I wanted to highlight it to bring it to eveyone's attention & we can all start to make a change for the better. Wishing you all the best & obviously your heart is in the right place in wishing to help.

Amazing story. A Mann well lived and well loved.

Excellent work highlighting a difficult, yet positive, journey of a loved one with Dementia to provide hope to others.

Well worth the read whether you’re touched by dementia or not.
In a sometimes painful but realistic way, Sarah opens your eyes to what could lie ahead and how to better understand and manage the condition.

So beautifully written. This is such an informative article. Thank you very much indeed. I have learned a lot by reading this. The more we are all educated, the more we can help patients and their families receive the care they need. Thank you for educating me. Inspirational and very touching.

So beautifully written!
The love shared between father and daughter is tangible. So precious 😍

Fabulous story outlining the positives as well as the heart-breaking moments of loving someone with dementia. Uplifting from start to finish.

Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.