I can only speak from my own experience of dementia, because every journey with this condition is different. What I’ve gone through, how I feel, and how it affects my day-to-day life may not be the same for someone else. Dementia is deeply personal – what I remember, what I forget, the emotions that come and go – they’re all unique to me.
So, when I share, I’m not trying to speak for everyone, just offering a glimpse into my own reality.
My Dad
Over 10 years ago, my dad was diagnosed with dementia at age 70. It started with little things – barely noticeable. My dad’s doctor told me that some people with dementia simply fade away. And this is the only way I can describe the dementia journey for my dad and us as a family.
I have been blessed with great parents, a great childhood and into adult hood, they were a big part in my daughters’ lives, helping to shape the people they are today.
I remember my dad as a big strong man, who loved his job, who was a joker, who loved music – Rock-n-Roll in particular. After over 35 years’ service, his workplace closed and it took part of him with it. He worked for a couple more years and then he retired. I think this is when it started, the little things.
We used to laugh that he was always asleep when we went, they did enjoy holidays early on and they were a big help with my daughters and my niece, but even then, my dad looked for any excuse to stay home, much to my mum’s annoyance.
We didn’t notice it at the time, but he had started to withdraw, he was happiest sat in his chair in front of the fire or in bed. Over the 10 years, he had throat cancer, a burst ulcer, followed by bladder cancer, he took it all in his stride and my mum was always at his side supporting him. He never complained, he only moaned about leaving the house.
As a family, we were lucky my mum is who she is, although she has health issues herself, she was always there for Dad, which meant we could carry on with life as normal, just visiting and stepping in when Mum needed us and when she wanted to get out of the house for her own sanity and a break. Dad was never any trouble, to be fair he was in bed most of the time, and he only ever got lost once. It was the longest 8 hours in our lives! We never knew where he’d been, he didn’t know, the only thing we knew was that the police picked his car up coming off the M6. He couldn’t find his way home. My dad never cried, but he did on this occasion, when everyone had left and it was just him and Mum. We took his car keys off him not long after that.
His final years were spent sleeping more and more, fading a little bit more every day. I don’t think he even noticed the pandemic and he never had COVID. The only thing that never faded was his love for my mum. And she did all that she could so that he could stay at home. The biggest thing for me was that he didn’t forget who we were and I’m so grateful for this.
Towards the end, Dad was barely awake, in the short spells when he was, he just wanted to go back to bed, he had little conversation, he didn’t eat and drank little. The biggest consolation was that he was always happy to see us and he would say: “I am happy”.
It was a dark day, when we finally reached the stage that we couldn’t cope anymore and our doctor stepped in called in carers – they were such amazing people, they were so considerate and respectful to my dad and Mum. Their help meant my dad could remain at home, in the place that he loved with his family around him.
It was just 6 weeks later on the 27th March 2023 that he left us aged 81, we said our last goodbyes. As the doctor predicted, he peacefully faded away and I couldn’t have wished for anything more. Dementia may have taken a lot of things from him, but it never took his love for his family.
Reflection
Looking back this is what I remember the most, at the time it was a struggle: the desperation of how we would cope as his care needs increased, and what we would do once the care cover stopped (he only had 6 weeks palliative care), the regular calls to my brother to help pick him up off the floor, the constant arguments to try and get him to eat or drink something, making sure someone was in the house with him at all times, the struggle to get him to wash, the accidents, looking after Mum so she could look after Dad, working full time and worrying how to juggle both at the same time – our list is short compared to most people’s struggles, but when you’re in the thick of it you have to get through it, what choice is there!
It does feel like you lose the person twice. The first being slow and quiet, as the person you love starts to slip away, memory by memory. They’re still there, but not fully. Conversations change, familiar moments fade, and slowly, the connection you once had begins to unravel.
The second is the final goodbye. It’s like mourning in two parts: once for who they were, and again for their physical presence. It’s a double heartache – watching someone disappear while they’re still sitting right in front of you.
My mum
It’s now 2 years on, and my mum has been diagnosed with vascular dementia aged 81 caused by a stroke in the past. Having cared tirelessly for my dad, masked the slow changes in my mum. She has been lost since he has gone and has lost some of her purpose. Initially, the changes in her we attributed to old age and water infections. But her symptoms are getting noticeably worse, one day she is ok but the next something is missing (she is mithered as we say), she struggles to find words, gets easily confused, mixes up who we are, she has 2 of some people and she can’t figure out where the second one fits in, she relies on us more and more, and the worst part is she constantly comments that she doesn’t know where my dad is sleeping. It does come back to her, and she gets upset as she remembers; it’s heartbreaking. It feels like pieces of her mind are flickering in and out depending on the day.
It’s been hard to accept the diagnosis, I was clinging to the fact her increasing confusion is a water infection and a dose of antibiotics will sort her out. But I can’t deny it any longer, we are losing another parent to this terrible disease.
As a family, we are only just starting out on this journey, she’s doing well and still very self-sufficient, but I know it’s going to be a difficult one, it’s very different to before – just knowing there is support out there when we need it is comforting.
This Year’s Charity
This year, we’re proud to support Alzheimer’s Society as our chosen charity. Dementia affects millions of people and their families, and Alzheimer’s Society is doing vital work to provide support, fund research, and raise awareness.
We’d be so grateful if you could help us raise money for this incredibly worthy cause. Every donation, big or small, makes a real difference in the lives of those living with dementia and those who care for them.
Together, we can bring hope, support, and change.
