Ailsa’s husband, Richard, was diagnosed with Alzheimer’s disease in 2019, aged 62. Life goes on for them, and they continue to make lasting memories together. This Autumn, they will embark on a European rail adventure to coincide with the Rugby World Cup.
"It’s safe to say our family are huge rugby fans. Richard hails from a family of rugby lovers, it’s a big part of his life. In fact, he takes a lot of enjoyment from most sports, it has always been a fixture in his social calendar! I think it’s the sense of community and camaraderie it brings. His love of rugby has seen him travel the world in support of his beloved Scotland- and he has been fortunate enough to see some beautiful, and very far-flung places!
"Of the last three rugby world cups, he has travelled to two – first to New Zealand in 2011 and then to Wales in 2015. The next one is just around the corner, this Autumn in France. Luckily, we’ve managed to secure tickets to three of the Scottish games – the first in Nice, the second a week later in Lille, Northern France and then the last one, against Ireland, in Paris. We applied through the cognitive disability ticketing process and thankfully, it worked out.
"Richard and I have shared many special trips together. We’ve ventured to Europe many times – taking wonderful road trips in Italy, France, Spain, and Switzerland. He was always the designated driver, and I was his co-pilot, planning the route and navigating as we went along. This was our favourite type of holiday, always filled with new experiences and adventures.
"Before we met, Richard was already an intrepid traveller, following his team around the globe – always donning his kilt with pride! It was during one of these trips that we were brought together, at the Rugby Six Nations in Dublin, February 2000. Things worked out and we got married three years later – but not before we had to change the initial date of our wedding, just to avoid a clash with a rugby trip to Fiji over our first wedding anniversary!
"We have spent almost half of our married life living in Australia. In fact, that’s where Richard received his Alzheimer’s diagnosis in 2019. For quite a few years before that, he’d experienced atypical symptoms which we had initially put down to stress but when they began to worsen, we decided to seek medical advice. That became a very expensive process, with the cost of the various scans and consultations really mounting up.
"When we eventually received confirmation of Richard’s diagnosis, we were both shocked. Hearing the words from a doctor’s mouth – nothing can really prepare you for that. At first, Richard was anxious and afraid, worried that he would deteriorate within months. And so we made the decision to move back home to Scotland to be closer to friends and family. Logistically, that wasn’t without its challenges though – we were making the move in the middle of a global pandemic!
"Now home, we are both adapting to living life with dementia. It wasn’t immediate, but we’ve realised that it shouldn’t stand in the way of us doing things we enjoy. Take rugby, for example. When we started discussing our options for the upcoming World Cup, we already knew that Richard wouldn’t be able to drive this time. Instead of me taking on that responsibility, I suggested we take the train instead. But rather than this seeming like an inferior substitute, we decided to make it a real feature of our trip.
"Inspired by a holiday I took in my 20s, we booked interrail tickets and started planning a holiday where we will travel and sightsee during the weeks between the three rugby matches. Some might think this isn’t an ideal option for someone with dementia, but Richard still feels able – and he’s willing! He wants to be as independent as possible, for as long as possible, and I want to support him to continue doing the things he loves. We both think, while we can still have adventures, why not?
"It’s important for both of us that we continue to live out our interests. Richard loves rugby and we both love to travel; dementia won’t stop us enjoying either of those things. Realising this has helped Richard’s mindset shift from the initial fear and worry he experienced, to a realisation that life can, and does, go on.
"Our plans for September are well underway. I have a huge atlas with sticky notes all over it, plotting the places we plan to visit. We plan to stay 2-3 nights in most locations, so that we’re not always on the move and have time to relax and take in the sights. We’re going to enjoy the South of France first, then head down into Italy, and we’re particularly looking forward to visiting Venice for Richard’s first time. Then we’ll head back up through Switzerland to the games further north, stopping off at various places enroute. I’m sure there will be plenty of wonderful photo opportunities to capture our experiences, adding to that box of cherished memories.
"There’s no denying that life is different since Richard received his diagnosis. No amount of travelling or rugby games will change that. He used to have a very demanding job that he had to give up - that has been a big adjustment. He’s also gradually becoming more and more dependent on me to help with everyday tasks, which is something we’re both having to adapt to. There’s certainly a different dynamic now, with things Richard used to lead on now falling to me – such as organising this trip, for example. In the past, he’d be a leader for some of the rugby adventures he went on with the boys – sorting flights and taking control. He’s no longer able to do those things so yes, there’s been a change in that respect.
"I know as our departure grows closer, he’ll probably begin to show some nerves, but I’ll be with him every step of the way. This is about defying dementia to continue doing the things Richard loves. It’s about making memories and showing others that it can be done.
"I do have some observations already about the planning process for a trip like this. When it comes to finding accessible facilities that make attendance at matches more feasible, for more people… I think there’s a lot still to be done. Sports associations should better promote what support is available for people who have cognitive impairment, such as quiet areas for pre-game build up and post-game wind down. Even having areas of the stadium that are particularly close to toilet facilities would be so helpful. I think more consideration needs to be given to those with dementia, whose main interest is sport, to be able to participate more easily. Especially if it’s their main source of socialisation. What I really want is for Richard to have a typical ‘boys rugby experience’, like he used to – with me being able to just meet up with him and offer support when he needs it.
"Although he suspects this might be the last world cup event he can attend, we won’t be focussing on that. Instead, we intend to make the very most. I plan to document our days, to share with others who might be thinking about taking a holiday with someone who is living with dementia. I will share my reflections as a carer, and what I learn about supporting him on an adventure across Europe. I’m going to keep track of the number of trains we use, the miles we cover, the number of towns, cities, and landmarks we visit. Richard will, of course, be in his trademark kilt and we’ll be flying the flag for Alzheimer Scotland along the way! "