Suzy’s mum Barbara surrounded by her family

I never met Suzy Webster’s mum but in a strange way I knew her through her daughter, and when I heard that Barbara had died I experienced a deep sense of sadness.  I asked Suzy if I could write something to honour her mum, though as I sit here in front of my laptop I realise that inevitably this piece is as much  about the extraordinary woman that is Suzy as about her profound and very special relationship with her mum.

I first met Suzy in 2014 when she was speaking at a conference in London.  Though quietly spoken and understated, she has the power to move you.   She told her audience that two years earlier her parents had moved in with her and her young family so that they could have the “dementia adventure together”.  It was simply put, yet behind the words lay the endless reserves of love and courage that those of us who have followed Suzy and her mum’s story have witnessed over the past eight years.

I was to see Suzy on and off at various dementia events.  She was unfailingly open with me about how things were, allowing me to glimpse behind the laughter, the depth and complexity of emotion that always accompany a dementia diagnosis.

Then, in the spring of 2020, the pandemic hit us.  By now, 73-year-old Barbara was reliant on a wheelchair and hoist, and six carers attended the house in pairs three times a day.  To reduce her mum’s risk of contracting Covid, Suzy decided to reduce the number of domiciliary carers entering the house by taking on the evening shift herself.

She had initially wanted to take over all her mum’s care but her husband Andy, a hospice chaplain, understood the unsustainable toll this would take on his wife – who, by the way, was still working for Age Cymru – and persuaded her to share the burden.

With the country in its first lockdown, I saw a tweet from Suzy.  Typically outward looking and open-hearted, it hinted at the gritty realities involved when caring for someone you love in Coronavirus times.

“At 8pm my new care shift helping Mum to bed will have just finished.  I will definitely be joining in #clapforourcarers #clapforNHS but also thinking about family carers who are having to cope often alone & with no support, PPE or training.  #WeAreInThisTogether”.

Later that year, Suzy was a guest on my podcast.  It remains one of the most listened to episodes of all time.  She spoke of the toll on her and of her family’s vulnerability.   “My mum seemed to have no rights.  There was an inadequate normal before Covid, and now this”.

With no choice but to retain some carers, Suzy knew that Barbara could die from the virus.

“Perhaps this is mum’s time. Day to day I haven’t got time to think, but I’m watching mum grow down just as you watch a child grow up.

“I sometimes look at mum and think, we’ve lost you a little bit more today”.


But the unprecedented situation also brought, in Suzy’s words, unexpected privilege.  A hands-on carer for her mum again, she embraced the opportunities this presented – to tuck her mum into bed, to hug her, to give her a kiss and occasionally hear her say softly, “Lub you”.   Two words worth more than anything money can buy, and a phrase that will stay with me forever.

Then, as the vaccines began to allow the UK to open up, Suzy once again had to learn to let go.  Fear hit her in waves; she was terrified that if her mum contracted Covid at this stage, the past 100 days would all have been in vain.

This spring, her fear materialised: Barbara grew suddenly weak and nearly died.  Just a few weeks later Suzy appeared on my podcast for the second time and was typically open about the two terrible days when a hospice nurse told her this was probably it.

“It was as if I’d been punched in the stomach,” Suzy said.  But there was also, she admitted, somewhere deep down, a sense of relief.  She and the girls had a holiday booked for the summer – one of her first thoughts was that her dad could now come.

Such moments of unflinching honesty mark out this young Chepstow mum for me and hugely increase my admiration of her.

But Barbara rallied, as people living with dementia often seem to do in the face of death (my mum took us to the brink half a dozen times in her last few months), and Suzy realised that she needed to talk to her two now teenage daughters about how much they wanted to be involved when their grandma’s death finally came.

Suzy, I now know (to coin a phrase) constantly thinks of those around her – her mum, of course, her teenage daughters, one of whom took her GCSEs this summer, her dad, her husband.   But what of her?

Full of gently spoken wisdom, Suzy has a steeliness to her too and a strength that’s enabled her to steer her family through the deep, choppy, uncharted and unpredictable waters of dementia.

Her daughters, she says, have grown with her mum, in the final years they learnt to read her language through her eyes.

“Mum has been a gift to us”, she told me earlier this year.

Suzy wanted to share that gift, the story of her mum’s dementia, and the lessons she and her young family were constantly learning.

“Sometimes you have to remind yourself to go and sit with your mum, go and hold her hand and stroke her hair,” Suzy told me when we spoke in May.

“Remember, that mum is there – just go and be with her.  Often, I just put my head on her shoulder and now and again she pats my head – and that’s my mum, Pippa.  That never changes, that feeling of mum”.

Oh Suzy, I know just what you mean.  Your mum may have gone, but what a legacy she’s left us, through you and your girls, through Andy your rock, through your phenomenal honesty, your gentle wit, your perceptive wisdom, your team spirit and your willingness to share.

All that’s left for me to do is repeat the final message you sent to us all.