One morning, about seven years ago, I woke up and forgot how to get dressed. I sat on the end of my bed in Cardiff, and simply didn’t know what to do. I couldn’t even remember how to get the clothes out of my wardrobe. After 15 minutes, everything came back to me, but this episode was frightening, and the point at which I started to worry seriously about my health.
Two years before that, I’d suffered the first of a series of three mini-strokes. I was 59, and working for the Environment Agency, having previously enjoyed a 30-year career with the police. Out of the blue, one side of my face dropped and I was unable to say the letters S and F properly. I also developed extreme fatigue, a tremor in my right arm and difficulties with my memory. At the time, my partner, H, and I were in a long-distance relationship in different parts of the country, and I wanted to continue living independently.
I recovered enough to go back to work, where these memory lapses became more frequent. I couldn’t remember how to log on to my emails; someone would show me, but I’d forget again. When I asked a second time, they would say, “But we just showed you,” and lose their patience.
Proud of my record – and knowing I was still good at my job – I vowed to continue to fight on. But by July 2016, I knew something was very wrong and I went to my GP. My doctor was dismissive, telling me, “You’ve had a stroke; your problems are physical, not mental,” and I left my appointment in tears.
Eventually, my GP relented and I was referred to the elderly care unit. That name really upset me – to be called “elderly” when I was barely 60 – but after a series of scans and MRIs, I was diagnosed with vascular dementia. Part of me was relieved there was a name for what was wrong with me, but it also felt like a death sentence. I went home and cried for three months, barely leaving the house. It wasn’t so much, “Why me?” but, “Why me at the age of 60?”
I also recalled caring for my father, who’d had Alzheimer’s disease. Dad had suffered from hallucinations – seeing the ornaments on his mantelpiece move around, and insisting that a stranger was sitting in his armchair. He was so convinced of the fact that we had to put a dining chair on his seat to stop “Bill” sitting there.
More than once, my dad called 999 to report imaginary burglars in the house. At one point, I had to sleep in his bed to stop him wandering outside in the middle of the night. Was this what the future had in store for me? I was terrified. The doctors told me to stop drinking caffeinated coffee, and to continue taking my blood pressure medication – that was all the help they offered. My cognitive health continued to decline: I had no idea what to cook or how to do it, so I stopped eating anything except toast and cereal.
Friends didn’t know what to do or say so they drifted away; my brother and sister didn’t have the capacity to look after me. Eventually, in October 2016, I was forced to take retirement for ill health, and I decided to move in with H, who lived in East Sussex. I hadn’t wanted to impose my illness on H, but we both realised I couldn’t put it off any longer.
On the Eastbourne coast, H made me proper meals and I rallied a bit, but my overall health continued to decline. The pandemic hadn’t started yet, but I lost my sense of taste and smell. I started bumping into doors, had restless and painful legs, and found it hard to sleep.
In the end, I nagged my new GP for a referral to a neurologist, and in 2020 I was diagnosed with Parkinson’s disease. The doctor then told me I almost certainly had a related condition called Lewy body dementia, but that could be confirmed only by post mortem examination. “I’m not ready for that yet,” I replied. Lewy body dementia was the disease affecting Robin Williams when he took his own life in 2014. If he’d been diagnosed, he might have understood his illness and still been alive now.
At the time of my diagnosis – which was later confirmed by a specialist nurse – I read a leaflet saying I would live for only five years. Eight years later, I am still here.
Lewy body dementia is different from Alzheimer’s in that there isn’t that same continual, downward slope. Instead, my mental condition fluctuates – I can go from fully lucid to forgetful and back again within a few hours.
The best way of describing it is that a fog suddenly comes down, and I can’t see through it. This is terribly frustrating. I used to be a terrific multitasker, but now, I have to do one thing at a time painstakingly. If H comes in, full of stories of the day, I feel overloaded and the noise bothers me. Sometimes, I walk into a pub and realise it’s too unbearable to stay, so I walk out again. A lorry drives past and I jump out of my skin.
The other day, I forgot the word for “watch”, and had to describe it as “that thing on your wrist that tells the time”. I also get hallucinations from time to time and feel a presence next to me: my beloved cats died earlier this year, but I still see them on the sofa. Sadly, these episodes are becoming more frequent.
But I haven’t given up on life just yet. When I got over the initial shock of my diagnosis, I told myself: you can either sit here and watch daytime television, or you can do something with the rest of your life. I took the latter option. At first, I did voluntary work in a hospice, but that ended with Covid. I am now an ambassador for the Alzheimer’s Society – in fact, I am the first person to have had dementia on its board of trustees. I helped with the launch of KYN, a new dementia home in Bromley, Kent.
I want people with dementia – and their relations and friends – to understand this illness. Don’t put us on the scrap-heap. I was the same person the day after my diagnosis as I was the day before it – so is your family member, so don’t treat them any differently. A person with dementia may not remember everything that happens, but they will remember how you made them feel at the time. I personally enjoy hugs, and often ask for a cwtch, which is a hug in Welsh.
Making the occasional visit to London to give a speech on my condition keeps me motivated. But these trips are often exhausting and I need to sleep for two days afterwards. Mostly, I spend time on the beach. I take myself down to the sea to watch the sunrise and listen to the birds; see the odd dog walker and fisherman. I’ve even taken lessons in beach fishing, though I’ve yet to catch anything edible.
In the face of an uncertain future, spending time in nature gives me a sense of calm. I’m 68 now, apprehensive about the long haul, but I refuse to give in to my illness. I try not to dwell on the things I can’t do – and have made the decision to enjoy the things I still can.
As told to Miranda Levy
Lewy Body Carers Week runs from 10-16 June
Disclaimer: The copyright of this article belongs to the original author. Reposting this article is solely for the purpose of information dissemination and does not constitute any investment advice. If there is any infringement, please contact us immediately. We will make corrections or deletions as necessary. Thank you.
