Forgetting but not gone

He used to be my Dad. As I look at him sat on the sofa I don’t know who he is now. Still looks the same, but I’m not looking at my Dad I’m, looking at the thing that’s killing him. If he thinks, behaves and talks differently, can he be the same person?

I’ve heard that the first sign can be a change in character. Maybe his was when he started trying to be funny. After years of the family dog being as likely to attempt a humorous line, Dad wanted everything he said to be comical. This was quickly followed by a dramatic decrease in his ability to learn new things. When you work in the IT industry, not being able to keep up with trends means that you won’t last long. His contract wasn’t renewed and he lost a part of his identity.

New jobs came and went. Simple tasks that would have been too easy for him in the past were now beyond his capabilities. Being without that job shattered his already fragile confidence and left him isolated at home. Even before the illness, describing him as socially awkward would be putting it mildly. Now stuck at home and that lack of socialising over the years meant he was left with no friends visiting him when he needed them the most.

He used to be so comfortable in his own company that Mum would say that he could not speak to anyone for a week and still be happy. This infuriated her as she struggles to go five minutes without talking. Dad’s lack of enthusiasm for anything would also drive her crazy and make them such an odd couple. When asked how something was, his standard reply of ‘It was alright’ seemed to cover anything from beans on toast to Michelin star food, from a karaoke night at the local pub to a Fleetwood Mac concert.

Only once have I seen him genuinely happy with a Christmas present. This was just before his official diagnosis, but we already knew something was wrong. His beloved Carlisle United had been drawn to play at Everton in the FA Cup third round. I’d managed to get tickets for the game off the Everton website. As usual I had bought him a book, so I wrapped the tickets up on top of that. He opened the present and did his usual slight acknowledgement of appreciation for the book, without noticing the tickets.

‘It’s the thing in your other hand that’s the main present,’ I said.

When he realised what they were he broke out into the broadest smile I have ever seen from him.

That game proved to be one of my lasting memories of him, one of many that he has long since forgotten. Carlisle scored an equalising goal around half way through the first half, keeping alive the possibility of a fairy tale upset. Dad and I jumped up out of our seats and celebrated the goal, Dad with that smile from Christmas day. We both realised at the exact same moment that we were the only two people in that entire stand who were celebrating the goal. The goal scorer had run off and slid on his knees by the corner flag down to the right, in front of the 7,000 travelling supporters from Carlisle who were all going crazy with joyous celebrations. Meanwhile we were getting death stares from all around. One particular Everton fan a few rows behind us was screaming at the stewards to throw us out. That fan didn’t know us, if he did he would’ve known that Gandhi and the Dalai Lama were more likely to incite a riot than me and my Dad. A middle-aged man behind us kindly suggested that if Carlisle scored again we should probably remain seated for our own safety. When they hit the crossbar in the second half we just about managed to follow his advice. Two late Everton goals won the match 3-1 but at least we got out of there intact.

I’ve heard that life can only be understood backwards but has to be lived forwards. Living with someone with Alzheimer’s it is easy to think too much about time gone by. As his condition worsened Dad seemed to live more in the past, a past that becomes increasingly jumbled. Now he doesn’t know that my Mum is his wife, despite forty-five years of marriage. When asked who his daughter is he will say Mary, remembering his sister’s name instead. Maybe there is something about Mary because it is the one name that has stuck in his head, even though he has barely spent any time with her over the last forty years or so. I’m just the guy who walks the dog with him, feeds him and makes sure he takes his tablets. I’m not even sure he understands the concept of a son. Most of my time outside work is spent sitting with him, watching re-runs of Inspector Morse, Lewis and Endeavour. The plots are still a mystery to him, no matter how many times he has seen it before. Maybe it’s the vague sense of familiarity that provides comfort.

Doctors used to try to tell us that his condition wasn’t that bad. They weren’t comparing him to how he used to be though, the way we knew him. His memory used to be his greatest asset. Freakishly good at quizzes, in his hey day he would have out run a Chaser and been able to crack into the Eggheads team. The breadth and depth of his knowledge used to astound me. I wondered how he possibly had time to learn so many things. As a kid I would put it down to him simply being so much older than me, but now I’m older than he would have been then, and I’m still nowhere near that level of knowledge. I can only laugh at how, when he had all that knowledge he would barely say a word. Yet now when everything he says is nonsensical, we can’t shut him up. When we watch the TV quizzes I generally remain silent, even on the occasions when I do know the answers. Answering questions in front of him seems ridiculous, like playing five-a-side football against Bobby Charlton and mocking him by being quicker to the ball. Even years after his diagnosis Dad still had amazing moments of clarity, plucking impressive answers from the depths of his jumbled mind.

The decline is unstoppable and constant but not linear. One day he can’t do something, but the next day he can. Around eighteen months ago he was struggling to tie his shoe laces. After my usual process of encouraging him to do the task himself I relented and tied his shoelaces for him. It was a horrible moment of despair for me, dads are supposed to tie their kids’ laces. As I tied them I thought of all the times he must have tied mine, even though I don’t remember it ever happening. The difference being that he would have tied with the hope of looking forward to the day when I could do it for myself. I was tying knowing that he wasn’t going to get any better. Bizarrely even now more often than not he can tie his shoelaces himself. Not always conventionally, sometimes they end up in a mess, but they keep his shoes on his feet.

For over a year now he’s not been able to take the dog for a walk himself. He could get lost, he might leave the front door open, he would forget his key and not be able to get back in if he had remembered to shut the door, he might forget to put Mason back on the lead when he got to the road and he wouldn’t pick up any poo. I’ve tried not to rob Dad of any aspect of independence until necessary. When we take Mason for a walk, I let him hold the lead, and put the lead on the collar. A task that seems so simple, and for Dad sometimes even now it can be. Yet other times he will try many other crazy ways of attaching it to the dog, sometimes trying to tie the lead itself around the collar, other times putting the whole thing around Mason’s neck as if it was a noose.

The worst part of living in the past is me regretting all the things I never found time to do with my Dad, but now it’s too late. At each phase of the decline I have focussed on what can no longer be done. I should have focussed on what we still could do. It’s always tougher in the moment though. No more playing in golf competitions, became no more playing golf at all. Not being able to have a meaningful conversation became barely being able to understand each other’s words.

A couple of years after the trip to Everton, I decided on another trip for his Christmas present that year. It seemed ridiculous to me that such a big Horse Racing fan as my Dad had never been to the Cheltenham Festival, the most famous and prestigious National Hunt Race meeting in the world. It happens every year, yet he had never managed to go. I bought us a ticket each. By this stage in his decline conversation in the car was going to be far from flowing. I put together a couple of CDs of his favourite songs. As we headed down the M6 and M5 we had Johnny Cash, The Eagles, Elvis, Bob Dylan and The Beatles amongst others for company.

Essentially Cheltenham Racecourse is just a big expanse of open grass, with grandstands full of thousand of people, most of whom are either drunk or about to get drunk and about half of whom are Irish. It is the history that makes it special, the best jockeys, trainers and owners in the world desperate for a winning horse at Cheltenham. This was also the biggest day of the meeting, it was Gold Cup day. The Grand National gets more public attention, but the Cheltenham Gold Cup is the race with the most prestige, the one that identifies the best horse over fences for that year.

Several races happened before the big one, me and dad having a small bet on each race. Even I can’t remember if we backed any winners, which probably means that we didn’t. We were in the cheap section of the stands, but our ground level view at least allowed us to be standing right by the legendary finish line. The Gold Cup came and went, without us backing the winner. It was one of those events and atmospheres that it was great to be able to say I have experienced.

We headed back home, with the classic tunes still playing on a loop. I was happy that Dad had been able to do something that would have without doubt been on his bucket list had he been the sort of person to make one. He would never have treated himself to anything like that. We got home late that night and my heart sank when I over heard Mum asking Dad about the day.

‘Did you enjoy it?’

‘It was all right.’

‘All right?! You’ve just been to see the Gold Cup, surely it was better than all right!’

‘It wasn’t the Gold Cup though.’

‘Yes it was. You were at Cheltenham, so it was the Cheltenham Gold Cup.’

‘Was it? Oh I didn’t realise.’

I should have taken him sooner, rather than waiting for him to be ill.

In this case the circle of life has included a role reversal with the son looking after the Dad. It’s almost impossible not to do some things the way he used to do them, especially the language I use.

‘Watch where you’re going,’ is now my mantra to him rather than the other way around.

So far I’ve bitten my tongue just enough to not say ‘Because I said so.’

I can’t help but find the disease fascinating at times too. The things he does remember when all else seems to be gone, makes we wonder why they survive. Most amazingly of all to me is how many song lyrics he still recalls. With that in mind the latest trip out I organised for the two of us was to St Helen’s Theatre to see a Johnny Cash tribute act. It didn’t get off to the best start, when the act came on the stage and said;

‘Hello I’m Johnny Cash.’

My Dad said ‘No you’re not,’ loud enough for the people around us to hear. Once the songs started though, as I suspected he would, Dad remembered virtually every word.

The performance was excellent, and Dad sang along quietly throughout. As the man pretending to be the Man in Black, started saying his thank yous, I feared that he wasn’t going to do a particular song. Fortunately, he was simply saving one of the best for last and got everybody on their feet for a rousing rendition of Ring of Fire. Dad and I stood up and belted out the song, both equally lacking in any singing ability. For me it was a magic moment, for him it was something that was forgotten before we had made the short trip back to Warrington. I decided that it didn’t matter if he didn’t remember it, I knew he enjoyed the moment.

In amongst all the sadness there have been moments of comedy gold. The latest of which occurred this past weekend when we took Dad to stay in a care home for the first time, for a week of respite for the three of us. When he settled down into a comfy chair in one of the lounges, the lady who runs the activities there came up to him with her sweepstake for the Grand National. Dad dipped his hand in and pulled out a horse called ‘Total Recall’.

To describe this period of my life as tough would be undoubtedly an understatement. I’ve heard it said several times that Alzheimers is worse for those caring for the person than it is for the one with the condition. I’m still not sure about that. The thought of being so confused, so reliant on other people and incapable of communicating properly with others is something that I dread having to go through. Developing the condition myself is my biggest fear. Without question though Dad’s plight has been incredibly difficult for Mum and myself. Needing to spend so much time with him has meant I hardly play golf any more, I miss a lot of Warrington Wolves matches that I would have gone to, I can’t work full time, residential trips with work have been put on hold, holidays don’t exist, I don’t spend enough time with friends and spending so much time on the sofa has ruined my physical fitness.

Dads are supposed to teach their sons. I certainly learned plenty from my Dad, and not just the quiz trivia. The main trait I have tried to copy from him is putting other people first, looking after them and to be as happy for their successes as your own. The most vivid memory of him before Alzheimers is from a time when I had one of my best ever golf scores. He had been playing in the same club competition much later in the day. When he got home he had obviously seen my score on the computer in the clubhouse. As he came through the front door Mum asked him how he had done.

‘Oh that doesn’t matter. Have you heard his score?’ Dad said as he set off quickly up the stairs without even shutting the front door behind him.

Having heard him come in, I came out of my room to meet him at the top of the stairs. We did our only ever high five and Dad had a smile that matched the one that was induced by the FA Cup tickets years later.

Through this experience the learning has kept coming. The importance of friends and spending time with them. Realising that what I feel I am missing out on right now is obviously important to me. If I get genuinely free time again I will be a lot less likely to waste it. I won’t wait to make trips that I want to make. Experiences won’t be put off until some other time. Seeing my Dad like this has shown me the importance of making the most of the moment. Maybe one day I will forget everything too, but that doesn’t mean those moments won’t have happened. I also need to stop living in the past, to focus on what I can still do rather than regretting what I can no longer do.

He’s still there on his couch. Forgetting moments almost as they happen. He gave me life and I’m hoping I can still make the most out of it.

THE END.