Lewy Body Dementia: ‘My Life Changed In A Day’

Acclaimed cookery writer Rose Elliot talks movingly about her husband’s battle with lewy body dementia, and the peace and strength she discovered – somewhat reluctantly – thanks to the teachings of a monk…

‘One evening in the summer of 2013, a couple of months before we were due to celebrate our Golden Wedding anniversary, my husband Robert, then 79, went out in his car. I was busy and lost track of the time, then suddenly looked at the clock and noticed it was getting on for 9pm. I’d been expecting him back by 8 at the latest. The time ticked by and still there was no sign. I began to get worried and phoned the police, but there had been no reports of road accidents. Robert must be one of the few people around who refuses to have a mobile, so there was no way I could contact him – although I was surprised he had not got a message to me by some other means. All I could do was wait.

Eventually, well after 10pm, a breakdown lorry arrived at our gates with Robert in the front and his car on the back. He had filled the tank with petrol instead of diesel, the car had seized up after a few miles, and the shock had been so great that he had completely lost his memory – which was why he had been unable to contact me. He couldn’t remember where he lived, didn’t recognise our house or me: he had only managed to get home thanks to the kindness of strangers.

Over the following days he had tests and scans and was found to be suffering from Lewy Body Dementia, an unpleasant disease that combines the symptoms of Parkinson’s and Alzheimer’s, along with a strong tendency to hallucinate. It is particularly disconcerting because one moment the sufferer can appear lucid, and the next not know how to put a key in a lock.

Christmas came and went, and Robert continued to decline. I watched helplessly as my handsome, dynamic, inventive, warm, witty, wise, funny and practical husband became wobbly, incoherent, lost and living in another world.

By the end of March, I was having to shave him; by June, I’d had locks and padlocks fitted to stop him going out after he’d disappeared once, and the police had had to bring him home. Caring for him became more and more difficult; I couldn’t leave him on his own; I had to plan my life carefully. Then one night he fell over and I couldn’t move him. He was carried out on a stretcher, and that was the last time he went through our front door. He was in hospital for seven months and then moved into a home.

I’ve had some sad times, as everyone does – the day my father died suddenly of a heart attack; the night I miscarried our first baby – but without a doubt, the day I helped Robert settle into his room in the high-dependency nursing home was the most heart-breaking. At the other sad times, Robert was with me, there by my side, and we went through them together. Now, suddenly, here I was, experiencing the very worst moment of my life, and the one person who had always been there for me was the reason for all my heartache and pain.

I fell in love with Robert when I was only 15, and he changed my life. He is nearly 12 years older than me, and when I started going out with him I was desperate to leave school. So I abandoned my A-levels and started cooking for a living, starting at my parents’ spiritual retreat centre in Hampshire. I have been vegetarian since the age of three, and my food was well received. That led me to write my first cookery book in 1967, and to my present career… so the impact he had on shaping my life then – and throughout our time together – was immense.

Robert, who was a chartered electrical engineer by profession, would drive me to my cookery demonstrations, help me with all my equipment and any practical things that needed doing, and then while I performed he’d sit quietly at the back, watching.

Now I miss his touch, his smile, his laugh, his jokes – especially his jokes: I did not realise before what a rich lexicon we shared, private jokes that no one else could understand. I feel like a widow already. There are so many memories of things we experienced together, such as the birth of our three daughters (and seven grandchildren), and times good and bad, that I can no longer share with anyone. Having been together for so long, memories of him are woven into the very fabric of my life and there’s always something to remind me of him: a sound, a smell, the sight of his Wellingtons by the back door; his tools scattered untidily where he last left them.

Or, perversely, sometimes it’s the absence of something that used to be there that makes me weep: not seeing him working in the garden, barrow of weeds beside him, or not hearing the lawnmower in the garden, nor the sound of the grand prix or cricket on the television; no warmth in the bed beside me. I am having to learn to cope on my own; become a more competent driver, fix household items, deal with the practical and business things that Robert took care of.

Robert and Rose on their engagement in 1962

But, before he became ill, Robert gave me a great gift – although neither of us realised it at the time. Over the years he had developed an interest in Buddhism, something I did not share as having grown up in a retreat centre I shied away from anything remotely ‘religious’.

However, out of love for Robert I helped host some meditation sessions in our home. As a result I met a wise and witty monk who asked us to call him Ajahn Bhante, who taught us simple mindfulness meditation as well some basic principles for living – the original version that came direct from the Buddha, and which has today been found to have great benefits.

Now, going through this sad time of my life, Robert is no longer with me but the mindfulness practice is. It has made a real difference. I don’t do long meditations; instead, I take mindfulness breaths, as the monk described, throughout the day, whenever I feel sad or angry, and it brings me peace and strength.

I visit Robert at the home almost every day. He still recognises me – just. It breaks my heart to see him as he is: painfully thin, pale, gaunt, ‘vacant’, virtually unable to speak: I just hope his mental state protects him from realising his condition.
For me, the grief and sadness are still there, still intense, and I still weep a lot, but there is peace too; a kind of pool of peace that is building up inside me, comforting me when I feel sad, making it easier to bear.

I have learnt to appreciate what I have – and had – as well as the here-and-now. And for that, I am truly grateful. I honestly don’t know how I would have got through these last two years without the simple teachings from that monk.

Rose Elliot has written over 60 vegetarian cookbooks that have sold over three million copies around the world. I Met a Monk: Eight Weeks to Happiness, Freedom and Peace is out now (Watkins)

My 3 steps to peace

1. Breathe in naturally; feel the air going in through the tip of your nose, and then out through the tip of your nose. Really notice it and realise at this moment that that is all you are noticing, and all is well.
2. Allow yourself to experience your feelings but without judging, criticising or commenting on them; just accept them as they are. Breathe again. Keep feeling, and breathing, and thinking to yourself: “It is as it is: let it be.”
3. When you notice your breathing and recognise and accept what you feel, the emotions will lessen of their own accord – and you will find peace.

Most Popular