Forget-me-nots: how I dementia-proofed my life
After her diagnosis she faced a life of adapting, so this author set about finding ways to overcome her new challenges
I used to think of York as my forever home. My flat was next to the river, and I would proudly tell people that living there felt like being on holiday and never leaving. Then dementia came into my life and, soon enough, I realised my once-loved city, with all its hustle and bustle, no longer suited me.
I wouldn’t wish dementia on anyone: it was a bummer of a diagnosis to get and it very quickly became clear that life wasn’t going to be quite as I had imagined. I also realised that this new life was all about adapting to the challenges that dementia throws at me. My approach became to try to keep one step ahead, doing all I could to outmanoeuvre and outwit dementia at every stage. I like to see it as a game that I play.
I now live in a quiet village, but when I moved, I had no idea how hard it would be to learn to live in a new place. It wasn’t until I got the keys to my new home that I realised I hadn’t been capable of choosing a house that was appropriate for me. As I stood in front of the large window overlooking a beautiful paddock, I remembered I’d bought it for the view. I hadn’t noticed the awkwardness of the steps leading up to the front door and down to the back garden; I didn’t need three bedrooms and a garden out the front and back. Yet here I was, looking out over that paddock, happy as Larry in my new home – but also aware that I would need to adapt my environment to make it work for me.
My house is in a row of four that all look similar. When I first moved in, I would get very confused as to which was mine. Since I couldn’t remember the number, I’d happily walk up the path of my neighbours’ houses, and then get the feeling that something wasn’t quite right. This allowed me to meet my neighbours who, luckily, have all been wonderfully helpful. However, I needed to figure out how I could make my house stand out.
Forget-me-nots are the symbol of the UK's Alzheimer’s Society and, when I came across some beautiful tiles with the flowers on them, I realised they would be perfect to go on either side of my door. The full story of how I came by these tiles is in my new book, Somebody I Used to Know.
My kitchen is tiny and, when I moved in, it had two doors that used to endlessly confuse me. I couldn’t remember where they led, so I would end up walking round in circles.
Doors are often a problem for people with dementia: some aren’t able to remember what’s on the other side, while others prefer doors to stay closed for safety. In my case, the solution was a simple one: I got out my screwdriver and removed both doors, eventually turning the openings into arches. Now I can see where each exit leads without getting confused.
Kitchen cupboards and bedroom wardrobes pose another challenge. I’m often unable to see them, and they end up blending into the walls. When I first moved, my daughters would ask me why I was wearing the same outfit each day and I said, because I couldn’t find most of my clothes, that I thought I couldn’t have yet fully unpacked. In reality, I wasn’t able to see my wardrobe doors so had forgotten that my things were stored behind them. Many people said I should get transparent cupboards fitted, but not only are these expensive, they also look chaotic if you don’t keep them tidy – and I was certainly not going to.
I ended up taking a photograph of the contents of the cupboards and wardrobes and attaching them to each door. This was another simple yet effective solution: the photographs now attract my attention and remind me that my wardrobes have things inside them.
Considering colour and contrast is so important for people living with dementia, and I spent a long time choosing the colours that would feature in my new house. Carpets were the first thing to think about. Living alone meant I couldn’t have deep pile in case I saw footprints and became scared, not realising they were my own. Plain colours are ideal: complicated, swirly patterns can give the impression of movement and some flecks can look like crawling insects, which, as you can imagine, can be very disconcerting. There also has to be a contrast with the walls to make it clear where the floor ends and walls begin.
Because people with dementia can spend so much time looking at the floor to make sure they don’t fall, surfaces are also important. Shiny surfaces are to be avoided, as they can look like water, while black surfaces can simply look like a hole. This applies even to TV screens, which are black when switched off. I now have mine at an angle so that it reflects the images from my window, while the staff at the B&B I often stay at in Keswick now put a red pillowcase over the screen.
Then there are light switches, which are usually white and so can blend into pale walls. I found I couldn’t always see them, so after putting my thinking cap on once more in search of a simple, cheap solution, I came up with the idea of painting a dark-blue border round each switch. Now I can always find them.
When dementia fills my head with confusion and anxiety takes over, I have my Memory Room. I just sit and stare at all the photos hanging on the walls. Photos of much-loved people smiling back at me. Images of places I adore visiting, and I instantly feel calm. Everyone needs a corner of their house filled with precious memories that make you smile.
I moved in the winter (so I’m told!), so as soon as spring arrived, I was out pottering in the garden – and continually falling up and down the steps. If the edges of steps aren’t clearly marked, I don’t see them. I wasn’t able to remove the steps, of course, and it probably took me a while to work this one out. But then I spotted a small pot of luminous yellow concrete paint and added one simple stripe down each step. Since then, I’ve only fallen once or twice, and when that happened I simply gave the steps a fresh coat of paint.
You see, if you think of a diagnosis of dementia as a life of adapting, there’s often a way to overcome problems. My main tips would be:
Familiarity and consistency are the key to calmness, so moving house can be very traumatic. I was lucky and moved very soon after I was diagnosed. But with simple changes to the environment, an already lovely home can become dementia-friendly.
Colour and contrast are really important to think about because our eyes don’t always interpret information correctly. If you want to know whether the colours in a room are dementia-friendly, simply take a black and white photograph. If there is sharp contrast between the different shades of grey for walls, floors and furniture, you’ve probably got it right.
If someone with dementia is continually having a problem with something, find out why and help them adapt. For example, if they’re always falling over in a specific place, is it because they can’t see the change in floor type, or is the edge of the step not clear?
Always include the person with dementia when making changes and talk about why and how these might help.
Finally, my motto: there’s always a way.
– © The Daily Telegraph