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10-16 June 2024

Lizzie shares her experience of caring for her father who had Lewy Body Dementia.

"Roald Dahl’s Danny the Champion of the World, which Dad used to read to me, says “What I’ve been trying so hard to tell you all is simply that my father…was the most marvellous and exciting father...” 

"Danny, mine too and despite the best efforts of Lewy Body Dementia (LBD), it’ll never take away his greatness. Caring for him was one of the greatest privileges of my life and one of the toughest. 

"I moved back in with Mum to help take care of Dad and confess I had no idea about what caring for someone involved.  It’s A LOT.  

"Meal times were now a task; we prepared one ‘softer meal’ for Dad and one for us. Mum, the real hero of the story, gave him his breakfast, his medication, prepared lunch and dinner, all of which took time. 

"Body clocks were out of sync - I called it ‘Daddy time’. When we winding down for the evening Daddy was awake. When we didn’t want to get up at 3am, Daddy could be calling out. He was often asleep when grandchildren arrived, sorry to have missed them. 

"Dad suffered from hallucinations which can be part of LBD - we hid from bullies, pretended to ring the fire brigade and fought in WW2. I tried dismissing them, being there with him, and reassuring him. “Hello Daddy’”, “hello little one” he replied before scrunching up the bedsheet and stopping a chimney falling down. The mind is a powerful thing. 

"Also no one tells you about the amount of stuff. Strange equipment became a logistical challenge. Prescriptions had to be ordered, medicines selected, pads counted, bags dated, fluid charts completed - it was a constant rhythm. 

"I’d work remotely next door to Dad and would get up sometimes to hold his hand whilst he was having a vision, returning to my zoom call often trying not to cry. 

"There were lighter moments of course: 

  • Dad humming The Dambusters whilst being hoisted across the room  
  • “Bed-bound catch” was fun. We’d both start laughing, my face being the perfect target at the foot of the bed 
  • “Dad make sure you’re moving your fingers” – waggling them with vigour, he turned Raynauds into Beethoven. 

"As mentioned, I didn’t know much about caring but I want to say to any fellow carer, you’re doing a fantastic job - please remember that.

"I’m sorry to say we lost Dad a few months ago so please allow me to end with a tribute to him. Daddy, I hated seeing what this horrible illness stole from you but you were so dignified, kind, gentle and selfless until the very end, it is a lesson. I feel lucky that I could spend precious time with you, holding your hand like you have always held mine. Just because we can’t see you now, doesn’t mean that you’re not with us."

With thanks to Lizzie and The Lewy Body Society for sharing this story.

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