I arrived for a home visit to meet James and Julia (pseudonyms). James was clad in blue overalls, as if his day job was an on-call mechanic. I inquired if he was working in the garden. He chuckled and replied, ‘With looking after Julia, I am a full-time employee, I am the chef, cleaner, gardener, driver, carer, name it, that’s me.’ Then, with a big smile, he asked me to look at what else the overalls are useful for, and he demonstrated as he wiped his hands vigorously on them. He told me they were convenient and versatile and owns three of them, which makes running around the house easy. Julia looked at him and smiled, then looked at me and smiled before looking back at James and laughing loudly.
Julia tried to express something, but she couldn’t because, since the end of last year, she has developed aphasia. The last time I met Julia, she spoke and would tell many stories, some coherent, some very funny, and some woven through different times, so I was not quite sure if we were in the present, past, or future. Nonetheless, it was a warm welcome. The purpose of the visit was to introduce our research, assess whether Julia and James could participate in our research, and discuss consent and confidentiality.
From arrival, I could tell James was very dedicated to supporting his wife, who has vascular dementia. James served me a cup of tea and some biscuits and chocolates while Julia sat quietly sipping her juice, and when I spoke to her, she smiled and laughed. Yes, one of my favourite parts of fieldwork is having a cup of tea as the participants tell me the story of their lives. Occasionally, I might get a home-baked cake. I never ever say no to what I am offered, but probably because I come from a culture where it’s rude and offensive to say no to hospitality. In my culture, a guest is a god in a human form, and therefore, you are meant to offer something to drink or eat, and if they turn it down, it causes mistrust.
James told me that ‘Julia was living cheerfully with dementia for 10 years and now needs help with everything and is happy to do all he can to ensure she is happy and comfortable.’ He said that people are surprised when he says she is ‘living cheerfully with dementia.’ He said it was not easy, and he was in denial for two years after her diagnosis and avoided telling friends to protect Julia’s dignity until it was impossible to hide dementia symptoms. He also avoided social gatherings, making excuses for himself and Julia, but realised this was isolating them from their circles. He then realised that Julia was just ‘joyfully’ getting on with her life, taking each day at a time, and he decided he too should accept their new reality and live the best life they could with the new unwelcome visitor, dementia.
James told me to understand where they are now; I needed to know where they have been. He excitedly narrated how they were born and grew up in a mining village in England. Coal mining in the UK has a long, complex history spanning thousands of years, dating back to the Roman era. James was happy to fill me in on a bit of the history, its health implications, and how escaping that life was a dream for many, with only about five young men escaping per year, and he was one of them. Julia’s house was almost next to the pit.
Julia and James met in their village at the age of 15. James explained that they both passed their secondary exams, but Julia could not progress despite being a top student. It turned out she was the wrong gender and class. Despite Julia having to engage with gendered roles of her time, she eventually became a nurse later in life. James, without gender obstacles, was able to pursue a career as a pilot. They kept in touch via letters, and he laughed at how there was only one neighbour with a telephone.
Their relationship survived, and they got married at the age of 23. He was so proud to show me their congratulation postcard from the King and Queen on their 60th wedding jubilee. They have three children and six grandchildren dotted across the world. He showed me various photos of them and their achievements and said family was everything to him and Julia. He said his job took him all over the world, and with Julia working as a nurse, there were people to be nursed all over the world, and she was very accepting and accommodating of that lifestyle. He showed me more pictures of their life together. He later sent me a PowerPoint presentation prepared for the diamond jubilee from their childhood to now, a testament to their enduring love and commitment to each other.
James sat beside Julia, holding her hand, kissing her on the forehead from time to time, checking she was following the story, and prompting her memories on sections of the story where she would laugh, smile, or nod. James said if Julia stops smiling and looking jolly, then he will know something is very wrong. James said Julia has always been peaceful, positive, and open to people, and even after her dementia diagnosis, that part of her personality did not change.
James reminisced about their life and the many memories they have created together. He said they had lived in that house for over 30 years and had the privilege of enjoying walks by the river with Julia, which he directed me on how to get to. It was beautiful and peaceful by the river.
James also described how much Julia loves the garden, but she is now unable to work on it, so James does it, but Julia will sit in the conservatory, absorbing the evening sun, sipping a glass of Baileys, which she takes a little each evening and has done for many years. James said he did not want to change that routine now that Julia has dementia; he does not want to take her little joys away. The garden was beaming with colourful flowers that Julia could see from the living room’s large window.
Both are aged 84, and James proclaimed Julia was one month older. With Julia’s reduced mobility and fainting if she stands too long, taking a mutual walk by the river is not possible; they treasure the many memories they have created walking along the river. Since it was the end of the day, I decided to enjoy the beautiful walk by the river, which was as idyllic as James described it. James even followed up by email to check if I had walked along the river, so I was pleased to share that I had done so, and it was as stunning as he described, with swans and ducks. I could not believe how exciting a researcher’s job is, from listening to people’s stories to walking in their favourite places that have not changed much over time. Taking paths that humans have walked for centuries.
This sort of river walk is typical in Scotland and highlights its beauty. It’s even more scenic in Spring when everything is green and springing to life.
James also said the river walk would take me to the sea, where I can cross to a small island. He cautioned me to be careful to check tide times, so I don’t have to be rescued like people who have found themselves stranded on the island. Being stranded on an island during fieldwork wasn’t something we put in the research risk assessment. Scotland has approximately 900 islands, mainly located in the Shetlands, Orkney, Inner and Outer Hebrides, with only 94 inhabited, so you are never too far from an island.
James said if I looked closely, I might be able to see the three bridges, which I did. The Forth Bridge is a cantilever railway bridge built in 1890 that carries rail traffic between Edinburgh and Fife and is a UNESCO World Heritage Site. The Forth Road Bridge is a suspension bridge, opened in 1964, that carries the M90 motorway and connects Edinburgh to Fife. Queensferry Crossing is a cable-stayed bridge that opened in 2017 and carries the M90 motorway, providing a more direct route between Edinburgh and Fife and replacing the Forth Road Bridge for motorway traffic.
As a researcher, it is a privilege and honour when participants let us into their lives and trust us with their stories. James said he could talk all day about his life, and Julia said he has too much to share and wishes others could hear how they are living positively with dementia to help others who may be struggling, which is part of the reason I am sharing this. He said they have been together for so long that now, with Julia struggling to express herself due to aphasia, when it’s just the two of them, she doesn’t have to try because James understands her even without words. He is very dedicated to ensuring Julia is comfortable and well cared for and that she knows she is loved. He wants us to know that dementia is a complex condition, but we can also live well with dementia.
However, there was a hint of sadness that their pet dog of 19 years had recently died, but James said they were lucky that Julia seemed unaware of this, and they saw no need to upset her about it. So, while walking, I came across this beautiful cat, patched majestically among the hedges, which reminded me how much pets are part of the family and bring a lot of joy and comfort to people living with dementia.
So, in James’ words, we can live ‘cheerfully with dementia.’ We do not have to focus only on what the person can’t do; we can focus on what they can do. For Julia, a big smile and laughter reassures James that she is still here and that she is still the person he fell in love with over 60 years ago in a little miners’ village. Thank you for reading.