Andre reminded me that the little things are everything
We have shared Andre’s story before, a young man with his whole life ahead of him who received a devastating diagnosis of frontotemporal dementia at the age of 22. Andre’s story was also shared by the BBC after his mum Sam spoke publicly about his diagnosis, his personality, and her hope that donating his brain to research might help other families in the future.
Now, 5 months after losing Andre, Sam has returned to her role as a support worker at FitzRoy at The Maltings day service – a role she left in 2018. She has been reflecting on how everything she went through with Andre has given her a new appreciation of the difference that good support really makes.
I think about it a lot more now from a support point of view, but also from a parent’s point of view.
For Sam, returning to care was not something she expected.
“I kept saying to people, I’m never going back to care. I’ve done it before, I’ve now done it with my son, I don’t want to.”
After Andre died, Sam began to realise how much she missed being part of that world. At his funeral, Sam saw the people from The Maltings who had supported Andre in the last year of his life. She saw how much he was loved, and how much his life had meant to the people around him. She also saw how FitzRoy had supported not just Andre, but the whole family.
It wasn’t just about Andre, it was about all of us. I was like, I have missed it. I want to be back.
That was part of what brought Sam back to FitzRoy. She came back with a much clearer sense of how much good support can mean, both to the person and to their family.
“I’ve come back with an open mind and a very different view on caring, how to support, and just looking at the little things that matter, which I might have overlooked before.”
For Andre, it was often the small things that shaped the quality of his days. Andre’s diagnosis changed what he needed, but his personality, humour and relationships were still there. As Sam told the BBC, dementia did not take away Andre’s “personality, his sense of humour, his laughter and his smile” until the very end. He still had that Andre sparkle and his own way of showing people what mattered to him.
The Maltings team knew Andre well. They knew what made him laugh, how he communicated, who mattered to him and what helped each day feel like a good day.
As Andre’s needs changed, that knowledge became even more important. It helped the team adapt his support and keep finding ways for him to be part of the life around him. His last months were still filled with connection and laughter – a lot of laughter.
Andre reminded me that the little things are everything
Sam says that experience now shapes the way she supports other people.
She knows what it feels like to be the parent who is hoping someone will notice the small things. The familiar routine, the favourite drink, the look that says yes – or no – the moments of humour. The thing that may be barely noticeable on a busy shift, but means the world to the person and their family.
When you’re on the other side, you realise how much the little things matter.
For Toby, Deputy Manager at The Maltings, the difference in Sam since she returned has been clear.
“We’ve got the same Sam, but an even better version,” he said. “That lived experience has bloomed in her, she is so passionate and inspirational.”
Sam describes The Maltings as somewhere she wanted to return to because of the way Andre and the family were supported. She saw how the team were committed to making a difference, and she wanted to be part of that again.
I can now give that back. It’s made it clearer that this is where I should be.
Knowing the person behind the diagnosis
Andre’s legacy is still felt at The Maltings. Sam brings Andre with her in the way she notices people, the way she listens, and the way she understands that a good day is often built from many small things done with care.
At FitzRoy, Living My Life is how we support people. A huge part of that is Who I am – seeing the person beyond their diagnosis or support needs. For Sam, Andre will always be the person who brought that home.
During the worst period of her life, knowing Andre was safe and happy made an unbearable time a little easier. When she came to pick him up from The Maltings, she would often hear him laughing before she could even see him.
For Sam, that laughter was everything she wanted to hear – Andre was happy.
That is what she wants to give back now – helping other people have days that feel good to them, and helping families feel reassured that their loved one is safe, happy and known.
For Sam, the little things are now impossible to overlook, just someone taking the time to understand what a person is asking for can change the whole feel of a day.
Andre showed her that, and now she is proud to be back at The Maltings, giving something back.
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