The things I wish I’d known (and truly understood) at the start of this journey could fill a book by itself. It’s a constant education in understanding, compassion, adaptability and most importantly, resilience.
Three hours ago, if you’d seen me sat in the front of my car as the rain poured down (yes, really), crying and shaking uncontrollably, you would probably think I had hit breaking point. I’d just left Dad after what should have been just a nice casual lunch to realise that the Dementia has reached a point where a significant portion of his identity (and mine) – has been eradicated by this disease.
Recently, more often than not, he didn’t recognise me. It was heartbreaking at first. It’s always just been us but I understood his form of Dementia made visual identification more difficult and knew this was a possibility at some point. So, I adapted. I accepted that sometimes (more often than not lately…) he would talk to me about this other person – “my daughter” – and tell me some of the things we did together and talked about. He knows that I (the person sat across the table) am important to him and he could trust me but just couldn’t connect the two.
Then today happened – and it blindsided me.
We were discussing old memories of his time in the RAF over lunch and how he married my mother. Then there was a moment of confusion in his eyes and he couldn’t get the words out. I told him to take a minute, “the words will come“, I told him, almost on autopilot .
Dad takes 10 or 15 seconds and states: “I think there was a child from that woman.”
“Your ex wife?“, I ask.
“Yes, her“, Dad replies.
“Yes, you had a daughter together.”
Then, the sucker punch:
“Everyone keeps telling me I have a daughter but I never had kids….I had 5 siblings, that was enough.“, he says, chuckling to himself.
I don’t know how I held my tongue or held myself together in that moment. I knew better than to correct him. It’s too distressing. He’s in later stages of the disease now and living his reality based on how the brain has put remaining memories together in that moment.
But there I was, the only child to a single parent who I’ve been side by side with for the last three years, told to my face that I no longer exist in their memories. That’s the most gut wrenching thing; 30 years has just been eradicated for him by this f-king disease.
I managed to push the emotions all the way down, pay the bill and get back in the car with him. I put some 80s classics on – which he loves – and he tapped his foot and sang along every now and then. I focused on the road and getting him home. I faked my cheeriness throughout that entire journey.
By the time I’d dropped him off, I knew I had another 1 hour + in the car to get back to mine. So I went to get coffee and when I got back in the car. That’s when it hit: The pain. The tidal wave of emotions;
Real, all-consuming, heart-shattering grief.
I was hysterical. Listening to Jeff Buckley’s “Hallelujah” and taking pulls on multiple cigarettes between streams of tears. There I was, in the middle of a Sainsbury’s car park, wanting to curl up and disappear as the father I knew has been taken from me.
But I had to get home. Other than sleeping in my car, there wasnt another option. A few very deep breaths, a change in music (thank you noughties pop) and yes, another cigarette.. and there it was for me again: my resilience.
The word “Resilience” is something I find is thrown around a lot without true understanding of its meaning. However, when caring for someone, it’s something I believe you must learn and find in yourself. It’s not a ‘would like to have’ but a necessity. When caring for someone with Dementia, in my experience, it’s something you have to dig deep down and, particularly in later stages, be constantly ready to utilise.
Mind, the UK’s leading mental health charity states: “Resilience is not just your ability to bounce back, but also your capacity to adapt in the face of challenging circumstances, whilst maintaining a stable mental wellbeing. Resilience isn’t a personality trait – it’s something that we can all take steps to achieve.”
Resilience doesn’t mean you don’t feel things deeply. That you aren’t hurting. It means that even in those darkest moments, you find your own strength to move forward. It might hurt like holy hell but it’s not over. I believe that you then must balance that strength – which can be frankly, exhausting – with self care and personal joys, however small or silly.
Tonight for me it’s likely to be a bottle of red, candles, binge watching old episodes of Homeland and demolishing a box of Guylian’s chocolates.
Whatever it is, take those minutes for yourself. If it makes you happy, even momentarily, it will make you stronger.