Jon’s story – “Music has become our bridge”

Dad was born in 1945 in Surrey and grew up with his two brothers. He has always been adventurous, unconventional and intensely curious about the world. I remember him telling me about the time he spent travelling Russia with his brother, Paul, when they were arrested after being mistaken for spies; remarkably he recounts this story fondly!

Dad worked multiple jobs while studying at a dental college. He later moved to Lowestoft where he met Mum and built a successful dental practice. He also had a passion for chemistry and electronics. Growing up, I often found him in his electronics room at home, which was filled with the various contraptions he was working on.

Fitness was also central to his identity – even now, at 80 years old, he can run and do push-ups. As children, my older brother, Christopher, and I went on long, meandering walks with Dad. One time, we walked the outer perimeter of Pleasurewood Hills Family Theme Park while hearing children’s laughter from inside. We find this hilarious now. It wasn’t cruel – it was simply Dad sharing time with us in the way he understood best.

“In 2022, Dad was diagnosed with Alzheimer’s disease”

We noticed subtle changes in Dad when he was in his early 60s. He would recall events that had not happened, or adopt our memories as his own. Then, in 2019, Dad had a stroke. Physically, he recovered quickly, but we saw a clear decline in his cognitive ability after this. He had larger memory lapses, found daily activities increasingly difficult, and frequently recounted memories that had not happened.

Dad had an exceptional memory for numbers, but one time he forgot his PIN number at a cash machine. His temperament also shifted at times, with him becoming unusually irritable and agitated. These were brief but noticeable changes from the person we knew.

In 2022, Dad was diagnosed with mild cognitive impairment, and later with Alzheimer’s disease at the age of 76.

Although he was open to seeking a diagnosis, Dad was terrified. I remember him saying that the doctor told him he had one brain cell left and that his brain scans were completely dark. I think his Alzheimer’s diagnosis and fear had twisted his memories of these medical appointments.

I think the diagnosis became real to Dad when he had to surrender his driving licence. His confusion behind the wheel was becoming very dangerous, but as a family, we felt such guilt for telling the GP that we thought Dad’s driving was no longer safe. He found this loss of freedom and independence extremely hard.

“The Admiral Nurse visited Mum and was a huge help”

As his dementia progressed, Dad became increasingly dependent on Mum. He experienced separation anxiety and panicked when Mum left the room, even to go to the toilet. She was his full-time carer and was physically and emotionally exhausted.

Mum first had contact with a dementia specialist Admiral Nurse in December 2023, after being referred to the service by her GP. At the time, she was at breaking point.

The Admiral Nurse visited Mum and was a huge help. She answered Mum’s questions about Alzheimer’s disease and shared advice around her role as a carer. The Admiral Nurse also encouraged Dad to continue his hobbies, so he took part in a few woodworking sessions which he really enjoyed.

“The emotional impact of Dad’s diagnosis is profound”

As Dad’s needs increased, it became clear that he needed specialist long-term dementia care. Mum resisted moving Dad into a care home for as long as possible. She felt incredible guilt that she was betraying him. I felt this also, but I knew that if she remained Dad’s only carer, I would lose her as well. This is what pushed me towards finding a care home for Dad. The Admiral Nurse supported us in our search for a suitable care home, reassuring us that she was just at the end of the phone if we had any questions.

After trial periods in various care homes, we eventually found a good placement for Dad. The initial transition into the care home was very difficult. Dad was confused and distressed – he even broke windows and climbed fences in an attempt to leave. But the care home was great at safely adapting to better support him, and Dad is now much more settled.

Mum and I visit Dad in the care home every week, but the emotional impact of his dementia diagnosis remains profound. Watching someone you love change so dramatically, while still seeing glimpses of the person they were, is incredibly painful.

“Music has become our bridge”

I play the drums, and before Dad moved into the care home we used to have weekly drumming sessions. I’ve brought my electronic drum kit with me a few times when visiting Dad at the care home. Dad loves music by The Rolling Stones, so we drum along to his favourite songs, putting on a show for the other residents. He instinctively joins in on the drum kit – although his memories are fading, his love of music remains strong.

During one visit, I recorded this video of Dad playing along to a song I wrote, called ‘This shrinking world’, which is inspired by his dementia journey. The song is written from his perspective, capturing the confusion, fear and emotional disorientation that a dementia diagnosis can bring. While this version is instrumental, I am working with a singer on a vocal version. Music is the best way for me to honestly express my feelings.

In these moments shared with Dad, there is recognition without the need for words. We reconnect through our shared love of music, which I hope always remains.

I have seen some people completely withdraw from Dad since his diagnosis, which is really sad. Sometimes people get frightened by the word ‘dementia’, seeing the condition more than the person living with the diagnosis. But I still see my dad. He will always be Dad, first and foremost.