Dealing with the loss of a loved one to early-onset dementia

My loving family

My mum, Sharon, was born in Swansea and grew up with her older sister, Beverly, and younger brother, Robert. Mum met my dad, Martin, in 1984 and they moved to Cardiff, where my dad lived, to start their new life together. 

They had their first child in 1988 – my oldest brother, Peter, followed by my other brother, Tom, who made his arrival in 1990. I completed the family in 1991! Three children in three years! I don’t think this was my parents plan but they took it in their stride and brought us up in such a loving family, something I will always be grateful for. 

When me and my brothers were growing up, my mum worked evening shifts three days a week so that she could be there in the days to look after us and do the school runs whilst my dad worked. 

‘My mum was a super mum and I can’t remember her complaining about anything.’

She would always be doing something with us. I honestly don’t know where she got all her energy from.

If she was tired, she definitely didn’t show it!

Becoming a mum myself

When I found out I was pregnant in 2015, I felt so nervous telling my parents. It wasn’t a planned pregnancy and I was still living at home with my partner, who was in the navy. 

I told my mum first and she instantly had a massive smile on her face. Her words to me were, ‘This is great news! It’s just what the family needs.’ 

These words have always stuck with me because mum was so excited about becoming a nan for the first time. She absolutely adored her grandson from the second he was born.

Mum’s early-onset dementia diagnosis

My grandpa (my mum’s dad) had early onset dementia and passed away in 2002 at the age of 65. 

Not long after his death, I remember seeing my mum upset and a family member saying to her, ‘Don’t worry, there will be a cure by the time you’re old enough to get it.’

Sixteen years on, my mum was diagnosed in July 2018 at the age of just 56 with the same condition as her dad. 

My mum was having numerous amounts of tests and scans for just short of two years prior to this. The scans of her brain were coming back normal but she was struggling to hit her targets at work and there were visible signs that something wasn’t right.

 ‘It didn’t come as a surprise to me when we were finally given the diagnosis, but I was still devastated.’

My instant thought was she wouldn’t get the opportunity to see her grandson grow up and this broke my heart. The words she said to me when I told her I was pregnant would forever go round in my head.   

My mum didn’t want anyone knowing at first, including me and my brothers. I think this was just her motherly instinct and a way of protecting us, which she always had done. 

It wasn’t until my mum and dad’s neighbour, Pete, saw her in the garden one day and asked, ‘No work today?’ To which she replied, ‘No, I’ve got dementia’. That’s when she started to open up. 

From that day, their neighbours, Chris and Pete, were nothing short of amazing. They were both so supportive and caring, not just to my mum but my dad too. That’s something as a family we will always be grateful for. 

How mum’s condition progressed quickly

In November 2019, my mum was admitted to Barry Hospital on the Young Onset Dementia ward. She was becoming quite aggressive at home towards my dad so it was the right thing to do whilst they tried to sort my mum’s medication. We were all so shocked and confused at how quickly mum was deteriorating.

In February this year, my mum stopped eating. She would refuse food but would still take liquids. This went on for a number of weeks. Then in March, I received a call from my brother to say that mum was going to be receiving palliative care. Her body had become so weak and was shutting down.

My mum was only diagnosed 18 months before. How could this be happening so quickly? I instantly had so many regrets because I wasn’t expecting to lose my mum so young.

The whole family spent every day in the hospital next to mum’s side.

Coronavirus was just starting to get that little more serious so I feel lucky that we got to spend that time with mum. Had it been a week or two later, we may not have been allowed in the hospital. 

On Friday 13 March 2020, my mum peacefully passed away. She had just turned 58.

Mum's death gave me something to focus on

I never expected to lose my mum at the age of 28.

I feel lucky and grateful that I had 28 amazing years with her but so sad, and slightly bitter, that she was taken so soon. 

I will continue to talk to my son about her and I have pictures around the house so he will always remember what a loving, caring nan she was. 

‘Losing a loved one at any time is hard but losing someone during a pandemic is awful.’

Due to the pandemic, we were only allowed ten family members at mum’s funeral, which broke my heart.

Why my mum? Why did she get Alzheimer’s? Why was it so rapid? Why now?

The least she deserved was a send-off with all her family and friends as she was loved by so many. But we’re now planning to have a proper celebration of mum’s life. 

I’ve also signed up for the Step Up for Dementia challenge to complete 850,000 steps within three months. I felt this would give me something to focus on. 

It’s been hard and there have been days where I’ve stayed in my pyjamas all day. But I will complete the challenge and so far I’ve raised nearly £3,000 for Alzheimer’s Society, which is a testament to how loved my mum was. She really was the best.