Dementia: My Embarrassing Hero

Heroes come in all shapes and sizes (and, no, I don’t mean those miniature chocolates that seem to get smaller each Christmas).

If I were to ask Archie, aged 11 who his hero is, he would either name Andy Murray, or possibly now Kyle Edmund, or some footballer who earns more each month than many people earn in a lifetime. As a very small boy, it was either Bob the Builder or Thomas the Tank Engine. A few years ago, Captain America or Iron Man.

Martha would be acutely aware of who had asked the question and using her unnaturally high emotional intelligence would, I’m sure, declare with a dramatic hug, “It’s you, Mummy.”

Mabel would, depending on my timing, either dance and sing her answer (to the tune of Moana’s How Far I’ll Go, whilst attempting a ballet pirouette) or would growl at me like a dog.

My point, I suppose is that as children our heroes are not fixed. They change with the weather, with trends, with our emotions.

I remember as a young teenager being hugely embarrassed by my parents. Mum was bossy and I never seemed to be able to do anything right. She also seemed stricter than my friends’ parents and would happily tell my friends off in front of me for the slightest thing.

My father, was the local GP and my friends all knew him well from him being their family doctor. But, despite him having the high standing in the village, he still had the ability to utterly humiliate me. Whilst driving along, he would, without warning, honk the horn and wave at complete strangers, who, in their confusion would smile and wave back. As young children, this was very funny. As teenagers, it was simply odd and we would slide as far down in the seat as possible so we couldn’t be seen and associated with this very strange man.

He used to always make my friends try their vegetables too – even though they said they didn’t want any. He’d make every visitor try and least one pea and if they ate that one, then he’d give them another. They’d end up laughing, I mean, looking back he was a funny man, but at the time…. well, if the world could have swallowed me up it would have been very welcome at times!

I am reminiscing about all this because the start to 2018 has been pretty horrendous. Not all of it, mind you. Martha turned 9, I had a lovely birthday weekend….there have been a few super highlights. However, my father’s health has been a massive cause for concern following three emergency hospital admissions.

My father was very poorly around 20 years ago. A benign brain tumour followed by unexplained seizures that several consultants and clever professors struggled to get under control. They did though, eventually. After several years.

Until a few weeks ago.

My brother was with him at the most scary time, when the world was darkest and we were very unsure of a positive outcome. He took some time out from sitting by my semi-conscious father, holding his hand and went instead to see my mother in the home. “Just to really depress me!” he laughed.

You have to laugh.

He told our mother that dad was very poorly. He tried to make her understand that we were all very worried and Dad wouldn’t be visiting for a few weeks. Of course, we all knew she wouldn’t understand, but you still hope. You still believe that somewhere deep inside a hidden corner of her brain she is hearing us. Her response was to stare off into space, seeing the things we cannot see, hearing the things we cannot hear and mumbled some noises in reply. The words “potatoes” and “helicopter” being the only two recognisable words in amongst the other mumbled sounds.

Twenty years ago was scary. But, no matter what happened, our mother was there. At every step of the way, she held his hand and drove him to his appointments. She enabled him to keep working by driving him to his patient visits each day. She also shielded us from it – or from the worst of it, anyway.

Every day there is a mum-shaped hole that follows me around. It hovers like a shadow that only I can see. I have learnt to live with it and hide it quite well. In fact, I have been very impressed with how strong I can be, when I need to be.

But, for the past few weeks, while we have struggled with my father’s health, the shadow, this mum-shaped hole – has morphed into a terrifying chasm. It feels like I am teetering on the edge of a black abyss and it is terrifying.

I bumped into a lovely friend in Aldi and she chatted away, like friends do and I lost it. I completely broke down. Crumpled right in front of her, mid-conversation. I had stepped off the edge and dipped my toe in the chasm of dread and fear and for a few moments it overwhelmed me. My poor, lovely friend was, quite rightly horrified (I am not a pretty crier!) as I struggled to regain some composure in the bread and pasta sauce aisle. I apologised profusely and had a quiet word with myself when I got home.  It was during this quiet word when I realised that my dad is still causing me embarrassment in front of my friends. He’d have found that funny.

My mother’s absence throughout the past few weeks has been acutely painful. Physical almost. I have ached to hear her voice, to have her tell me it will all be okay. I have sobbed for her to wake from her foggy reality and come and help us get through it. I have cursed and shouted and blamed her for making me feel useless and scared.

Her absence has accentuated my fear. Her strength, that would have reassured and calmed has been replaced with silence and incoherent babble about potatoes.

I am not ready for a world without my mother’s strength.

I am not strong enough for that.

The problem is, I do not have a choice.

So, the update is that my father is doing well. We are waiting for further appointments and we need answers but, for the moment, all is calm.

Hubby and I were at a business meeting a few months ago, before the mum-shaped hole turned into a scary chasm. Hubby was asked who his hero was. It was quite a formal business meeting and the question was completely unexpected and took Hubby by surprise. He took a few moments and then stated it was his grandfather, because of his humility, his kindness, his grace and his ingrained goodness.

I can think of no better reasons to choose someone and he is indeed, a rather amazing man.

I was then asked who my hero is. “My dad,” I stated without hesitation.

“He has had so much to deal with, but he never complains and he handles everything life throws at him with immense dignity and grace. The way he looked after my mother and put her needs first, despite the difficulty and hardship that brought him, is remarkable.  He is strong and brave and is also the kindest man in the world, who would do anything for his family.”

I have just realised that I never told him – about the question I was asked, or about my answer. I should have told him.

So, just to confirm Dad (and to possibly embarrass you a little, like you used to embarrass me)……

You are my hero, Dad. Because of your bravery, your kindness, your humility, your compassion, your strength and your fragility. You are my hero for all these reasons, plus a million or so more.

And I know, without any doubt, you were her hero too.

I miss you, Mum x