The worst thing I’ve ever done.

My Dad is dying, he’s in the late stages of Alzheimer’s disease. Over the past 5 years, since the diagnosis, I’ve had to slowly watch his decline. At first, it seemed so slow as to be almost unnoticeable. I would find myself doubting the diagnosis. And then all of a sudden, in the way that you suddenly notice that you need a haircut, I realised that my Dad had died some time ago. Not actually dead, because that is pretty black and white, but effectively dead. Everything happened so quickly, one day he just didn’t know who I was and kept talking as if he were in a completely different time and place.

Due to challenging behaviour, we made the decision to place him in a facility that could better serve his needs. I no longer live at home, but the stress was too much for me. I can’t begin to imagine what it was like for my family who were his carers. The Rubicon had been crossed.

We were given two weeks. It felt too soon, everything was being rushed, were we even sure that this was the right decision? But to be honest, we would have felt the same if we were given 2 years. We all wavered during that 2 week period, but the others were there to bring us back.

For obvious reasons, we couldn’t tell my father what was happening. Not only would he not remember the conversations, but his recent behaviour led us to believe that he would not take it well. So, we needed to keep it from him. Hide the fact that we were removing him from his home to go live somewhere else in the care of people he didn’t know. My father left home at 15 to join the Air Force because his family were so poor. When my mother met him decades later in Saudi Arabia, he still only had a single, small suitcase that contained his entire worldly possessions. After 30 years of graft, he now had a nice home filled with nice things that described a well-lived life. We had now made the decision to remove him from it all, and we couldn’t even explain to him why.

The weird thing about being around people with dementia is that you start developing nasty behaviours. You assume constant senility so begin to speak in code about them, in front of them. Maybe in the same way that you would do so with a child. It’s degrading. It’s also not true, my father knew something was coming and had a pretty good idea what, even if he couldn't explain it.

On the day we were set to transition, I drove to the family home with my stomach in knots. I was just praying for a smooth ride. The first thing I notice when I walk in is the suitcase and coat ready to go by the hallway. The finality of that imagery was, in some ways, the point where reality really set in. We were all false smiles and forced cheerfulness as we tried to engage him in conversation that could distract him from the evil thing we were doing. I even took my baby, who he loves dearly, as a prop.

He was reluctant to leave the house, he could tell that something was wrong, like an animal sensing a shift in the weather. More fakeness got him out of the door and into the loaded car. He kept asking where we were going.

“Just a quick hospital check-up, you’ve been poorly recently, haven’t you? It won’t be for long, I promise.”

It’s only a 15-minute drive to the facility, it felt both longer and shorter. The whole time I was just hoping that he wouldn't start fighting it. What the hell would we do if he started raging as we barreled down the road? Every twitch he made caught my eye in the rearview mirror. Was he reaching for the door handle?

Reaching the home pushed my guts even further into my throat. Last chance Sean. You can still stop this. I didn’t.

The nurses were lovely and obviously well-practised in this transition. They were in on our deceits so knew what lines to feed him. We were so close now, but he hesitated at the car.

“Where are we? What’s going on?”

I had no idea what to do now, am I going to have to physically force a dying man from my car? More people are starting to move towards the car. There’s my Mum, a handful of staff, me. All of us converging on the reluctant door. Fortunately, I didn't have to do anything worse than what I had already committed.

As my Mum cries against a pillar, he is led into the building with a group of friendly nurses. He doesn’t even look back, likely has no idea we were even there or who we were. The final image I have is of him being led into the building, while a member of staff carries his single, small suitcase. The entirety of his worldly possessions.

If you’ve lasted this long, then thank you. And as a reward, I have a favour to ask.

There is nothing that can be done for my family, but I want to do everything I can to make sure nobody else has to go through what we’d had to suffer. Alzheimer’s isn't some obscure illness, it’s currently the number one killer in the UK. More people die from this horrific disease than any other cause. So I’m raising some money to help.

This year, I will complete two marathons.

The first will be a full-kit hike across some of the most challenging terrains in Wales, the Brecon Beacons National Park.

The second will be flatter, but faster. I have entered the virtual Berlin marathon and intend to run it.

If you would like to help me combat this disease, then please consider donating to my cause. You can find my Just Giving page here: https://www.justgiving.com/fundraising/trek26-alzheimers-seanrobinson

If you are unable to, then I completely understand. There are plenty of ways to help without it ever costing you a penny, check out https://www.alzheimers.org.uk/.

Thank you.