The greatest Dad I could have ever asked for – Lizzie’s story

Lizzie shares her experience as a young carer after her dad, Rob, was diagnosed with frontotemporal dementia at age 58.

Lizzie smiles at the camera with a city backdrop

My dad was a gentle giant in every sense. He was patient, kind and slow to anger. As father-daughter relationships go, ours couldn’t have been stronger. Yes he was my dad, but he was also one of my best friends. We shared a love for the outdoors, music, sport and always finding ways to make each other laugh.

Early signs and diagnosis

One of the earliest signs something wasn’t right was with Dad’s driving. He always did the long-haul driving when we’d go away, but he began to have trouble with the clutch and the gears. In 2017, we went on a family holiday to Canada. Dad was getting ready to drive us to the Airbnb, and he froze. He couldn’t work out how to start the car, or process the directions we needed to go. We sat in that carpark for what felt like an eternity as he stared at the steering wheel. When we finally got to the accommodation, I broke down in tears. Dad cried too. We hugged and cried into each other’s arms.

Rob holds a young Lizzie up with his right arm

Looking back, I knew something was wrong but I didn’t think for a second that it was dementia.

I had graduated from university and moved to London where I was living with my best friends. I loved life in my new city and doing all the things people in their early twenties like to do. But after a couple of years, things started to change for dad and in the back of my mind, I began to have a constant worry for how he was doing. And each time I did visit home, I could see things were getting harder. He had begun to stare blankly at people, often stopping in his tracks and unable to get home.

He was diagnosed with young onset frontotemporal dementia in 2018, when he was 58 years old. I was 24. When I heard the news, I was at work. I remember thinking, I don’t know how to feel right now. Yes we finally had an answer to everything that had been going on for the past few years. But, that answer was a condition with no cure. I didn’t know how to handle that.

I tried to go home as much as I could to support Mum with caring for Dad. A few years earlier, trips home would mean Dad spoiling me with fried breakfasts delivered to my bedroom and weekend bike rides, but now it was centered around how I could help care for my dad and provide support and respite for my mum..

‘Sorry for staring, it’s just my dementia’

Dad’s staring had become progressively worse. Taking him out in public often became a source of angst for us as well as him. Being a tall man, people would see Dad staring and interpret this as a sign of aggression. People would snap at him, or in some cases, even confront him physically. This was devastating, especially given he was the most gentle man you could ever meet.

Working in the fashion industry, I saw a practical opportunity to help the situation. I designed a t-shirt for Dad to wear – on the front it said, ‘Sorry for staring, it’s just my dementia’. The effect was almost immediate. Hostility was replaced with empathy and understanding. From this simple idea, a side-project called This is Dementia was born, which I ran with my fiancé Rob and Mum until early 2024. To be honest, as much as the enterprise was about raising awareness and understanding of the condition, it was also somewhat of a coping mechanism for me.

Rob lies in bed with Lizzie and her brother by his side

Dad’s final days and dealing with grief

In 2022, Dad was hospitalised for an infection. Following that, he was bed-bound in our family home. Prior to this, he had also became non-verbal. And while we found ways to find joy, it was a devastating time for all of us. One of Mum’s lifelines through this period was her dementia specialist Admiral Nurse, Tracey. Mum retired from work early so that she could care for Dad full-time. Tracey would call or visit Mum every two weeks to check in, and provided practical support when Mum decided to start having carers come to the family home. Tracey also introduced Mum to a local carer’s group. We are forever grateful to Tracey for her support through this time.

Dad died in May, 2024, in his own bed, with family at his side.

Everyone grieves differently. For me, nature was a healer. I took the dogs into the forest, and let my emotions flow. If floods of tears came, I let them come. I went camping with my partner and had time to think about Dad and start to process his loss. And in time, I’ve reconnected with who he was before dementia. The years of joy and laughter. The best friend and the greatest Dad I could have ever asked for.