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I treasure every moment with Mum, knowing one day, she won't recognise me

Sarah Tillett, 31, from Newcastle, was just 24 when her mum was diagnosed with young-onset dementia. Here, she reflects on the challenges she’s faced as her mum’s memory has gradually faded.

Sarah Tillett (right) had always been close to her mum Mary (left) who was diagnosed with dementia at just 54 years old. (Supplied)
Sarah Tillett (right) had always been close to her mum Mary (left) who was diagnosed with dementia at just 54 years old. (Supplied)

It was the kind of text you never expect to receive – especially not at the tender age of 24. My brother had been helping my mum, Mary, with some paperwork when he sent me a message: 'Mum forgot how to spell her name today.'

Time stood still. We’d known something was wrong with Mum for a while – she was increasingly forgetful, and not her usual, happy self – but nothing as bad as this had happened before.

Feeling sick, I tapped out a reply: 'She needs to go back to the doctor. Worst-case scenario, she’s got dementia.'

Writing those words down was a lightbulb moment. Suddenly, all the symptoms Mum had experienced up to that moment made sense – although part of me could barely believe it. Mum was only 54 years old. How could she have dementia at such a young age?

Sarah Tillett with her mum Mary and brother Sean in 2019, a year after her diagnosis. (Supplied)
Sarah Tillett with her mum Mary and brother Sean in 2019, a year after her diagnosis. (Supplied)

Mother-daughter bond

Although we’d argued through my strong-willed teenage years, Mum and I were always close. She was known as 'Saint Mary' among my friends, because she’d go out of her way to make people feel welcome.

When she and Dad divorced when I was 16, we leant on each other for support, and when I headed to university, I went home regularly to make sure Mum and I had some quality time together. After university, I taught English in China for six months, and she’d send me care packages and letters – reminders of home that meant even when we were thousands of miles apart, we remained close.

Mum and I were always close. She was known as ‘Saint Mary’ among my friends, because she’d go out of her way to make people feel welcome.

When I came back to the UK in 2016, it was time for me to grab my independence, so I got a job in retail and moved to London. It felt like a new beginning for me – but it wasn’t long before I started to notice changes in Mum’s behaviour whenever I went home to visit.

She was always a stickler for cleanliness, but the house was increasingly dirty. She’d buy something she needed from the shop, then forget she’d picked it up and buy another one. One day, I opened the oven to find a green, rotting chicken sitting on a roasting tray inside. Goodness knows how long it had been there.

Mary Tillett at her son's Sean's wedding in 2018, the year of her diagnosis. (Supplied)
Mary Tillett at her son's Sean's wedding in 2018, the year of her diagnosis. (Supplied)

Early signs

Something wasn’t right, so we checked the house for carbon monoxide leaks, thinking perhaps that was causing Mum’s confusion. She’d also suffered from depression in the past, so we urged her to go back to her GP, who put her back on antidepressants.

Around this time, Mum decided she wanted to retire and move to Ireland, where her family lived. She’d left her job as a community psychiatric nurse to work at a supermarket, but had trouble with things like cashing up the tills, and was on long-term sick leave. We wondered if this was the change she needed to get better.

While my brother, Sean, was helping Mum with paperwork for moving house, he realised she couldn’t remember how to spell her own name.

It was while my younger brother, Sean, was helping Mum with paperwork for the move that he realised she couldn’t remember how to spell her own name. We hoped her condition might improve once she’d moved – perhaps she needed a change of scenery? – but instead, her symptoms got progressively worse.

When she arrived in Ireland, my uncle took her to a doctor, who ordered memory tests and a lumbar puncture, which can detect Alzheimer’s disease. Then in February 2018, I received the call that changed my relationship with Mum forever.

Mary Tillett, pictured back in her twenties. (Supplied)
Mary Tillett, pictured back in her twenties. (Supplied)

Devastating news

My aunt rang, and put Mum on the phone – but she was crying so hard, she couldn’t speak. It was left to my aunt to break the news: "Your mum has Alzheimer’s." I was devastated – she was only 55 years old. It was impossible to process the fact that our lives weren’t ever going to be the same again.

As a former nurse, Mum knew what her future held, and spent days after the diagnosis in bed, struggling to process it. She’d always been the one to look after me, but now I had to reassure her that everything would be OK.

Early-onset Alzheimer’s progresses rapidly, so we had to work out how we’d care for her as her condition deteriorated. We decided she should stay in Ireland, but after two years, Mum’s family was struggling to look after her.

It felt like I had to grow up overnight, and that our roles had been reversed – now I was the parent and she was the child.

We agreed she’d be better off back in England living with me and my partner, Shaun, who I’d met shortly after Mum’s diagnosis. The three of us moved to Newcastle to be close to Shaun’s family, and I found myself juggling looking after Mum with a job working from home selling digital software.

Nobody tells you what to do in that scenario, so we had to muddle along as best we could. It felt like I had to grow up overnight, and that our roles had been reversed – now I was the parent and she was the child.

Each morning, I’d wake up at 6am to get Mum showered and dressed, make her breakfast, and put the TV on for her before settling down to work. She’d wave at the people on telly, thinking they were in the room with her, and she’d wander into my office in the middle of meetings. I’d have to explain that I couldn’t talk, and gently lead her back to the living room. I also had to teach her basic life skills, like helping me to cook, clean and make the beds.

Special moments

Sarah Tillett and her brother Sean make the most of every moment with her mum Mary. (Supplied)
Sarah Tillett and her brother Sean make the most of every moment with her mum Mary. (Supplied)

Despite the heartache her illness created, there were still glimmers of light. We always managed to find moments of laughter, dancing around the kitchen together, or pulling funny faces at each other.

I also received some fantastic support from Dementia UK. Whenever I felt overwhelmed, I could ring an Admiral Nurse, who’d check in on me and offer emotional support and practical advice. A lot of Dementia UK’s staff have been in a similar situation, so you don’t have to explain what you’re going through – they just understand.

We always managed to find moments of laughter, dancing around the kitchen together, or pulling funny faces at each other.

Mum and I had fallen into a familiar routine, and it felt like things were going well when, in August 2021, she had her first seizure. I had no idea what was happening, and thought I was going to lose her. It was absolutely terrifying. A small percentage of Alzheimer’s patients develop regular seizures – and tragically, Mum turned out to be one of them.

I was advised only to ring the hospital if a fit lasted a certain length of time, and watching her suffer, counting down the minutes before I could call for help, was agonising.

Facing reality

After she’d suffered several more seizures, I realised I couldn’t cope anymore. Mum’s doctors agreed she needed to live somewhere she could receive medical support around the clock, and after a few false starts, Mum moved into her current nursing home just over a year ago.

It’s been hard, and I feel like I’m suffering from empty nest syndrome now she’s left home. The house is quieter, and there’s a space on the sofa where someone no longer sits.

The thing I’m most fearful of is Mum losing recognition of who I am. I don’t know if she knows I’m her daughter, but she knows there’s love there.

The thing I’m most fearful of is Mum losing recognition of who I am. I don’t know if she knows I’m her daughter, but she knows there’s love there. A big smile will come over her face when she sees me, and she’ll reach up for a hug, and those are the moments I hold onto.

There’s still a light in her eyes that’s pure Mum, and she’s always laughing. Through everything, she’s always been able to smile, and while she might not be able to communicate very well, she hasn’t lost her bright disposition. She’s happy in her own little world, and being looked after by people who really care.

Treasuring time with Mum

Sarah says the mum she grew up with is still there inside, with Mary always smiling and laughing. (Supplied)
Sarah says the mum she grew up with is still there inside, with Mary always smiling and laughing. (Supplied)

These days, I don’t take any of the time I spend with Mum for granted. I’ve still got the notes she sent me when I was at university – and the ones she left for me when she popped to the shops that simply say, 'I love you.' Keeping them felt silly at the time, but now they mean so much to me.

I’ve still got the notes she sent me when I was at university – and the ones she left for me when she popped to the shops that simply say, 'I love you.

Having gone through this experience, I’d tell anyone reading this to live in the moment – don’t wait until something bad happens to spend time with the people you love. All the things I used to know about Mum are gone now, but I’m holding onto the memories for us both.

Dementia UK is committed to ensuring all families with dementia have equitable access to the care they need. If you need advice or support on living with dementia, contact Dementia UK’s helpline on 0800 888 6678 or email helpline@dementiauk.org.