There’s a quote from Roald Dahl’s ‘Danny the Champion of the World’ which Dad used to read to me as a child and which I recently re-read to him. Danny says: “What I’ve been trying so hard to tell you all is simply that my father…was the most marvellous and exciting father any child ever had.”
Well Danny, mine too and, despite the best efforts of Lewy Body Dementia (LBD), it’ll never take away the greatness of dear Dad. Caring for him was one of the greatest privileges of my life and also one of the toughest.
After an unexpected three-month stint in hospital (swallowing food incorrectly resulted in bacterial pneumonia and sepsis), we managed to get Dad back home. I moved back in with Mum to help take care of him as he was now bed-bound and I confess, I had no idea about what caring for someone involved.
The district nurse said once “I don’t think any of us expected him to last very long but it just shows what home care and love can do”. I am so grateful to her for that.
Caring for someone is A LOT.
Meal times – Dad was a brilliant cook – were now a task; we often prepared one meal for Dad which had to be softer (please God, don’t let him choke) and one for us. Mum, the real hero of the story, gave him his breakfast, his medication, prepared his lunch and gave him his dinner, all of which took a long, long, time.
Our body clocks were often out of sync – I called it ‘Daddy time’ which we had to adjust to. When we were winding down for the evening, Daddy was often fully awake. When we didn’t feel like getting up at 3am, Daddy could be calling out on the monitor. He was often asleep when his children or grandchildren arrived, sorry to have missed them when he woke – if he realised.
Dad suffered from hallucinations which can be part of LBD – some were funny, some really weren’t… we had snakes on the wall, had to pretend to ring the fire brigade, were in WW2, saw bullies in the corner, had to reassure him that the house wasn’t for sale, to name a few. I tried dismissing them, being in there with him and simply sitting there next to him. I remember once saying ‘hello daddy’, “hello little one” he replied before scrunching up the bed sheets and trying to prop up a chimney that was falling on him. The mind is a powerful thing.
Also, no one tells you about the amount of stuff that has to be ordered or kept track of when caring for someone. Strange equipment that showed up became a logistical challenge. Prescriptions had to be ordered, medicines selected, pads counted, bags dated, fluid charts completed – it was a constant rhythm and a tiring one at times.
I’d work remotely in the room next door to Dad and at times would get up to hold his hand whilst he was having a hallucination or to give him a drink, before getting back to the zoom call I was on – returning often with fixed smile and sometimes trying not to cry.
There were lighter moments of course, mainly because of Dad’s superb sense of humour, although these glimpses became less frequent:
• Him humming the Dambusters tune as he was being air-lifted across the room in the hoist
• We’d play “bed-bound catch” sometimes. I’d stand at the end of the bed, give him the ball and we’d both start laughing, my face being the perfect target
• “Dad you need to make sure you keep moving your fingers” – he’d waggle them with vigour and turned Raynauds into Beethoven’s Fur Elise.
I was pretty naïve at the start of my caring journey. I know a little bit more now and I want to say to any fellow carer in whatever capacity, you are doing a fantastic job – please remind yourself of that during the darker times.
I’m sorry to say, we lost Dad a few months ago so forgive me if I conclude by paying 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 that I will take forward. I feel so lucky that I was able to 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.