‘There’s something wrong with mum,’ I confided to my younger brother one evening, around four years ago.
Every time I travelled home from university it was the same. I would return to a frosty house, watching my dad and younger brother walk on eggshells around my mum.
I remember heading out for drives with my dad to discuss mum’s unusually distant behaviour. The warm, bubbly, yet ever-so-slightly timid mother we had grown up with had somehow changed.
She lashed out over the smallest disagreements. Her motherly nosiness was replaced with indifference towards our lives. Little did we know that the frustration and helplessness we felt were an echo of the diagnosis to come.
We guessed that depression was the culprit for mum’s mood changes and unusual lapses in short-term memory. The real answer, however, was far worse than we had anticipated.
I was away studying English Literature at University of York when, in February 2018, my mum was diagnosed with an incurable illness called Early-Onset Alzheimer’s disease. In other words, she had dementia aged just 53.
Symptoms usually start small but dementia eventually reveals itself as devastating memory loss, speech loss, and behavioural changes. My mum’s parents passed away when she was a child; as we weren’t aware of any family history, we had no idea dementia could be looming.
The moment I found out – three years ago now – still makes me reel as if it were yesterday. I was in the library, frantically trying to finish an essay and dreaming about double vodka sodas when I received a call from my dad informing me. Within seconds, my studies and nightclub daydreams seemed meaningless.
It might sound ridiculous, but the way they describe these moments in films is scarily accurate. Your head swirls, your gut heaves, you laugh with disbelief. Dementia is terrifying and tragic, but I felt like I was being tricked. My mum’s in her 50s – she shouldn’t have Alzheimer’s disease.
Putting my studies on hiatus, I returned home. At first, it was frightening to utter the word ‘dementia’ around one another. I recall the four of us gathered in the living room, the house’s atmosphere no longer frosty – just solemn.
Mum, showing more resilience than any of us, smiled and said, ‘I’ll be okay.’
Of the estimated 850,000 people across the UK living with dementia, only 5% have young onset dementia – meaning a diagnosis before age 65. Though 5% seems small, that’s still 42,000 families facing the unique challenges of a dementia diagnosis at an early age.
Soon, the diagnosis crushed mum. Within months, she lost her driving licence, the job she held for nearly 25 years and her sense of purpose.
Before her diagnosis, she was as family-orientated as a mother could be. Mum was often found dreaming up day trips or experimenting with recipes from her battered Delia Smith cookbook.
Dementia affects the parts of the brain that control planning and reasoning, so these treasured parts of mum’s personality have since been lost to the disease. In the early months, she dealt with depression as she reconciled with her new future.
Young-onset dementia is still relatively rare, which means support and services tailored to dementia patients below the age of 65 are scarce in the UK. With little guidance from healthcare professionals, it’s often up to us to figure out the best way to care for mum.
Knowing there’s little support out there is isolating. Though mum is not yet at the point of requiring round-the-clock care, we need to make sure she’s safe and eating every day.
For me, it’s also important to keep her exercising and mentally stimulated. While my brother studies at university, my dad and I share responsibility. In a funny way, the experience has strengthened our bond. However, my dad also works 40-hour weeks as a taxi driver – it’s hard not to worry about him too.
Navigating your 20s is often unpredictable but finding out your parent has a terminal illness can veer your life off course entirely. Over the years, my brother and I have been mum’s young adult carers. The role is difficult at times – 45% of young adult carers in the UK experience mental health problems.
In the past, I struggled with a loss of identity and anxiety. Back in 2019, I was thankful that I could still pursue my Master’s in Cultural Studies, but I knew my life would shift after I graduated. I once imagined moving to the bright lights of London to pursue a career in journalism.
Instead, after deciding to become my mum’s carer, I found myself living in my childhood bedroom. I’m caught in a balancing act between my care duties and building my career.
We’re told that our 20s are supposed to be our ‘selfish years’, but it doesn’t feel like that. At the same time, I know I’m doing right by my mum, making our situation a little easier to accept.
Many of my days consist of arts-and-crafts and gardening with mum, or cooking and cleaning. Though this sounds like a simple life, most moments are clouded with the strange phenomena of anticipatory grief as we watch her slowly slip away. Completing the most mundane of tasks, like sweeping the floor or making dinner, reminds me of the abilities mum is losing.
The insidious process of dementia means she can no longer take care of herself and often struggles to communicate in complete sentences. Although I’m grateful to hear her laugh, the sad truth is that, in the near future, I might not hear her voice at all. Perhaps shortly after, she won’t even know who I am.
Coming to terms with mum’s dementia hasn’t been an easy journey; I still have days where I feel helpless. On others, I can’t help but think about the 54 million people worldwide living with the condition, whose families are facing similar worries to mine. Because of this, I am deeply passionate about the fight against this cruel disease.
I aim to tackle misconceptions about dementia, like the fact that one in five adults believe dementia is an inevitable part of growing old. As my mum’s experience shows, dementia can strike at any age.
It is currently Dementia Action Week, led by the Alzheimer’s Society. This year, the charity and its supporters are calling on the Government to cure the ‘decades of underfunding and neglect’ that means the current dementia care system is ‘difficult to access, costly, inadequate and deeply unfair’.
Right now, I’m kept up at night worrying about finances. In the UK, most families caring for someone with dementia have to fund the total cost of their care, which can be £100,000 for the average family.
Though my mum’s dementia diagnosis is terminal, talking about the disease, writing to my MP, and raising money for charity have turned into healthy coping mechanisms for my own grief. From skydiving from an aeroplane to cycling 100 miles with my boyfriend, I’ve raised nearly £3,000 for Alzheimer’s Society.
But it’s a drop in the ocean – only through sustained fundraising and active calls to our Government can we can hope to make change. I didn’t expect to become an advocate against dementia at 24 but I won’t stop until there’s progress.
My mum’s shocking diagnosis has taught me that none of us know if we may get dementia one day. I’ve also learned that people living with the disease are some of the most vulnerable in society.
To protect them, we must act now.
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