Tom with his grandad, John, before the move into care

‘He will always be her husband, and my Grandad’: Tom’s dementia story

Tom’s grandad, John, has Alzheimer's. Despite the ups and downs of the past few years, Tom reflects on the special bond he shares with Grandad, drawing on the life John has built with his wife, Ellen, Tom’s Nana.

Driving up the M6 with my Grandad on a weekend used to be the highlight of my week. I now realise those days were the best of my life. We used to have season tickets at Manchester United for a few years.  

There’s nothing quite like going to a football match with your Grandad, but for me, the best part was that car journey. Listening to Radio 4, moaning about roadworks, just me and him. We spoke about so many things back then and I learned so much from his words. 

Tom and his grandad, John, at the football together

Tom with his grandad, John, at the football in 2015

Committed to helping others 

Grandad's life was like a film. He used to be like a superhero to people living with dementia.

He was a psychiatric nurse during the 1960s at the old Parkside ‘Mental Hospital’ in Macclesfield. Back then, dementia was simply not understood.  Prejudice was commonplace in facilities like Parkside, and it would be normal for people with dementia to be wholly ignored by the staff who worked there.

Grandad was different. He saw those patients as people who simply needed care and support. 

He hated the stigma surrounding mental illness even back then. The patients at the hospital adored him – they had never known anybody like him before.   

He arranged trips out to the local area, group walks, ordered in fish and chips. This was unheard of. He’d stop and ask patients about their day or sit and read the paper with them. He educated staff on the right way to care. To actually CARE.

Grandad, along with everybody else who lives with dementia, is the reason I care so deeply about my work as a Customer Care Advisor here at Alzheimer’s Society, and the role we play in one day winning this battle. 

A dedicated family man

I’m always filled with pride when I hear about what Grandad used to be like. Such a compassionate human being. No prejudice. An example to others. My Nana, Ellen (but everyone calls her Ello), fell in love with Grandad while she was working as a staff nurse when she saw how kind he was to people. 

She never let him out of her sight after that! He retired in the early 90s following a long and successful career in healthcare to focus on making memories with his family.  

A younger John with his wife, and Tom's uncle as a baby

A younger John and Ellen with their son

He was a superhero to me too.  He never once raised his voice, yet I still behaved best when I was with him. Perhaps for fear of ever disappointing him, not that I ever could have!

Changes in Grandad

He was the cool Grandad, who used to sit me on his lap and let me steer his car into the garage. He was the man who helped me build my first snowman. The gardening maestro who grew the best cherry tomatoes and mowed an impeccable lawn.  

He had his own Nintendo and did brain training every day! Never missed a sudoku in the newspaper. Hysterically funny and very sharp. Proud Mancunian, Man United supporter all his life. A loyal and caring friend to all and of course, a doting husband to my Nana.

Simply the greatest man I’ve ever known.  

Tom as a young boy on his Grandad's knee, steering his car

Tom steering Grandad's car

That man still exists, but tragically he doesn’t know it. 

Though he never received a formal diagnosis, Grandad started to show minor symptoms of Alzheimer's in late 2016. Now, in just over four and a half years, he doesn’t understand what football is. He can’t mow a lawn anymore. He can’t remember the people he helped as a nurse all those years ago and the lives he changed.

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He has global aphasia alongside his Alzheimer's, meaning he struggles to speak and understand what is being said to him. He also lost the ability to read and write. 

Sometimes, usually in the evenings, he wouldn’t have any idea who Nana was. It was heart-breaking.  

Making a tough decision 

As Grandad's symptoms worsened, they became more challenging to manage, even with the support of our family. We knew it was time to act once it became clear that, despite our many efforts, his condition was too much for Nana to handle. It became impossible to look after him at home, and we needed to take the next step into full-time care.

Moving Grandad into care during a global pandemic was, to put it simply, terrifying. 

We’d seen the devastating effect coronavirus had on care homes last year and there was a real fear that despite the vaccination rollout, something similar could happen again.

But it was the best thing we could have done.  

He was immediately taken off harmful antipsychotics his GP had put him on and moved onto a far more suitable medication. Any aggressive outbursts have largely disappeared. He has become socially active again and enjoys spending time with other residents.  

He’s happy. However, he misses his wife.  

Reuniting Grandad and Nana once again

Recently, my Nana was diagnosed with mixed Alzheimer’s and vascular dementia. There is no medication suitable for her. She hasn’t shed a single tear, because she knows what she wants now. She wants to be with Grandad again. 

John and Ellen reunited, having a meal together

John and Ellen reunited, having a meal together

She wants to move into my Grandad’s care home to spend the rest of her life there, with him. Because deep down, he’s still that same man she fell in love with all those years ago. Dementia will never take him away entirely.  

He will always be John, her husband, and my Grandad. 

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Tom, you clearly have an amazing bond with your grandad. WOW what an amazing man he is too!!
Very sad for you & your family watching your grandparents go through this cruel disease. Also very heartwarming that they are together again. They are very fortunate to have such a caring & wonderful grandson to look out for them.
Cherish those little flicker of light moments that you will still have with them x

Thank you so much for sharing this. I lost my dad 6 years ago to the day after a thankfully short spell with dementia but it was all so heart-wrenching for my mum who struggled with the battles to spend time with her husband who didn't recognise her. Your words have filled my head with memories and tears. Thank you. Huge love

Thanks for sharing your story. I'm happy that they are both back together again and wishing all the best to you and your grandparents.

Beautiful and insightful are obvious as kind as your grandad, and he would be so proud of you for that, and the caring work you are doing now. So pleased he is happy now in his Care Home, as is my mum, who says that she feels safe there. Love to you all .

What a fantastic caring grandson and Absolutely dotes his Granddad, and what a beautiful love story of Tom and Ellen and there devotion to each other. I truly hope they can spend the rest of their lives together,if one couple of deserve it they do. God bless them

How wonderful it is so cruel but such a heartwarming story that they are together. What a wonderful grandson you are. They must be so very proud - stay strong you clearly have inherited many traits of you wonderful grandparents xx

Such a heartwarming, insipirational and also heartbreaking story. What an amazing man he is. My heart breaks for all Dementia sufferers.

Hi Claire,

Thanks for the lovely comment. He is a truly amazing man and whilst it is tragic what has happened to him and to all of us, he’s now safe and happy which he wasn’t at home. That’s all we can wish for :)

It strikes me Tom that you are very like your grandad, he’s a lucky man to have you.

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