Kirsty Day, who cared for her dad, who was diagnosed with Early Onset Alzheimer’s when she was just 24, is opening up about her relationship with him this Dementia Action Week.
The theme of this year’s campaign is having a conversation with a person with dementia – and here she talks about her difficulties with that after her dad’s diagnosis – after being inspired to open up by Ricky Gervais’s AfterLife.
I love talking. Me and Dave – my dad – would spend hours talking to each other. It was a shared passion – amongst others – including but not limited to football, books and music.
He was never stuck for word, a true conversationalist and (although would never have told him this then) – he was a font of all knowledge – and I was the sponge. We would stay up until the wee small hours putting the world to rights – something that I still enjoy doing now.
I had an unbreakable father-daughter bond with this chatterbox – or so I thought.
But this once articulate, quick witted and charming gasbag – was now asking me for cigarette sandwiches and repeating the same song lyric over and over – and I found myself unable to cope on occasions.
Dave’s dementia progressed, he lost his speech and I was lost for words.
He would rather have given up his right arm then not be able to hold court in a conversation. And I now didn’t know how to approach a chat with my former conversational comrade.
It has been six years since he passed away following a long battle with early onset Alzheimer’s disease – and I often think about how I could have better kept our conversations going.
Last week, while watching Ricky Gervais’s new series – After Life – I found myself relating to the main protagonist in the show – Tony.
No, no, no – not the bit about wanting to hit a child over the head with a hammer at the school gates – but how he feels and reacts to his dad, who is also living with dementia.
He is finding it hard to cope with his dad – following the death of his wife – and he gets irritated with him, as he keeps talking about his daughter-in-law as if she was still alive.
I would get annoyed with my dad too – just like Tony does – when he could not communicate how I thought he still should – now that makes me feel guilty.
Like Tony, I would sit in an armchair side-by-side my dad, both of us staring out at a wall and I would not have a word to say. Then I would batter him with questions (to break the silence) and expect an answer. I was 24 – with a baby on the way and didn’t have a clue.
While I can look back and laugh at the moments in his dementia now – like they do in After Life – at the time, I didn’t see the funny side of it. I felt shattered – physically and mentally – and my mum too.
Tony says things like – ‘What is the point – he doesn’t even know I’m here’ and “He can’t understand me’. ‘He doesn’t care what I say’. But as the nurse says in AfterLife: What if he does understand?
Along our journey together with dementia, I did bring some new tricks and tools to the table when communicating with my dad – to help me cope with being a carer, and In turn he was able to join in more – probably because I relaxed and went with the flow more – rather than thinking it needed to be the same as it always was.
Life, in that respect, became better for both of us. But don’t get me wrong – this isn’t a fairy tale, some days I still wanted to give up and I cried A LOT but other days I laughed – like when he would not share any jelly babies with my son or when got me mixed up with my mum – cue awkward conversation!
But I also have a lot of posthumous knowledge that I could have put into practice now too.
So here is what I have learnt. That it is OK not to be OK – that you can and probably will get angry and irritated at times, but you can press the reset button at any time and start again.
I have also learnt – that I am probably too hard on myself.
I have learnt that I did a lot of things naturally, like non-verbal communication and giving invitations to respond like saying: ‘I love Elvis’.
I have learnt, I don’t have to have verbal diarrhea and a pocket full of questions to enjoy communicating.
I have definitely got an increased understanding of dementia, which I wish I had then, and I have learnt that it is great to have the right tools in your box when communicating
with a person with dementia – maybe just not a hammer.
The last memory I have of being with my dad is sharing a cake with him for his birthday and listening to Elvis – we didn’t ‘talk’, we smiled at each other, held hands, did a chair dance and I remarked what a lovely Victoria sponge it was.
I have thought many times about having one last pow wow with my favourite chatterer – but I now know that communicating with my dad was not all about words – and it gives me comfort. our bond was never broken – just changeable.
To learn tools that can help you communicate with a loved one living with dementia, sign up to a free Empowered Conversations workshop here.