WE’RE TWO WEEKS INTO the hottest summer since records began. The chalkland garden outside the house is cringing and wilting despite my best efforts with the old zinc watering can. The molten heat melts candles on windowsills, and the blinds do little to defy the suffocating power of the normally welcome sunshine.
I’m hot, bored and irritable. My life’s on hold. My 97-year-old mother dozes serenely on the sofa. The chains which bind me to her are insufferable: duty, guilt, kindness, love even.
As mum has entered the final stage of her life encumbered with dementia it has been getting increasingly awkward to know what to do with her. We never got along particularly well anyway as she was so critical of my choices in life. However, my brother and I promised we would never put her in a home and that she would stay in her own house. Now we are both living ‘half-lives’ trying to accommodate her.
This is my ‘month with mum’. It’s getting more difficult to find a reason to get her out of bed every day when it’s very clear she doesn’t want to. When I get her downstairs for breakfast there’s always an unspoken expectation, a criticism: what is the point of this? Are we doing anything or going anywhere? Sometimes we play ‘The Cloud Game’. It starts with her sitting up in bed and pointing to the sky.
“Oooh look at all those clouds, its nasty out there,” she’ll say. “I think I’ll stay in bed.”
“Aaah but look at the patches of blue sky!” I’ll say. “There’ll soon be some sunshine. Time to get up!”
It’s hard to lift my voice up at the end of that sentence so that it sounds positive.
Today the heat is sapping my soul. I’m drained and dull and know that there is only one thing we can do. Nothing has prepared me for this sense of being trapped: free from my marriage, children all grown up, and now I need an excuse to get out of the house! I’m not even sure it’s safe to take an old person out in this heat but she’s pretty tough and we won’t be out for long. I decide mum can wear one of the straw hats she has accumulated over almost a century of living on this planet.
It has taken a few years of proudly staggering around on two ‘sticks’, (as she called them) for mum to finally accept the wheelchair. Now that we both know the score, a walk is so much more accessible. It’s strange how easy it seems for her now, to accept that someone else is in charge after 60 years of her tyrannical rule over her marriage and family. How sweet and caring she sometimes seems towards me now. I sometimes wonder if it’s a tactical move, now that she is totally dependent on the two of us, her children.
Of course, true to form, she refuses to wear the elegant hat I found in the top of her wardrobe. I tell her it will just have to be a short walk then, as they have been reporting on the TV that elderly people have been dying in this heat.
Once out of the door there are plenty of hazards which confront us, even on our most unadventurous route. The pavement outside is cracked and hollowed-out where the Tarmac has eroded, or it slopes at such an angle that mum has almost tipped out a couple of times in the past. After these early experiments, I decided that taking a wheelchair on the pavement was simply not feasible and resorted to the road.
We could turn right towards the village and the shops. Yet somehow, we never do. I realise that despite all our ‘differences’ over the years, love of the fields and sky may be something that we share. I take this route, knowing that it will be less bumpy.
Despite her dementia (or maybe because of my lack of skill on earlier journeys), she still seems to remember previous experiences and gives me continuous feedback about the state of the road surface and what might be coming up – in case I haven’t noticed. I’m getting better at it now that I am more experienced in wheelchair management. I smile as she points here and there. I’m starting to warm to her a little.
We reminisce about the many summer holidays we used to spend camping in these fields before she and dad bought a house here. She sits up slightly taller in the wheelchair and looks around her.”
We reach the end of the houses, and the road becomes a narrow country lane with no pavement or passing places. By now, I’ve become the Rally Driver and mum is my Navigator. Her role here is to warn me that there is something coming in case I haven’t seen it. We soon slip into an unusually comfortable companionship.
With the road quiet today and little else to occupy ourselves with, I point to the newish row of saplings which grow along the hedgerow at the road edge. They are elm saplings, planted about 20 years ago. I pick one for her now and let her feel it. I tell mum about the Dutch Elm Disease which decimated the ancient elms of England. Every time I tell her this, she is surprised, as with many things. Once, it was her who explained this to me. Her voice stops being monotonous and starts to lift and deepen with expressions of remembering.
It still feels strange for the roles to be so reversed. As the need to defend myself from her constant challenges recedes into the past, I start to feel any residual tension drain out of me. Gratefully I recognise the shift and we reminisce about the many summer holidays we used to spend camping in these fields before she and dad bought a house here. She sits up slightly taller in the wheelchair and looks around her. She has forgotten that her knees hurt so much that the pain makes her nauseous. Slowly, gradually, she is coming back to life.
It’s strange but it’s stirring me too.
We arrive at the farm, about half a mile from her house, set deep in the Oxfordshire countryside. Usually this would be the point of return, as we are running out of tarmac. Normally I would swivel the chair round and head back to tea and cake at home. Cake which mum loves but cake that I should be trying to avoid, having put on so much weight since we started our caring regime. Nevertheless, it’s cake which might just save the day by being the one really memorable part of it.
Unexpectedly, as we turn the corner, there is a warm breeze which evaporates the sweat on my forehead quite quickly and which seems to be cooling me slightly – just enough to make the thought of continuing a possibility. I carry on past the farm.
I deftly pivot the wheelchair though a motorbike-proof chicane. We find ourselves on a dusty dirt track with a green spine of grass down the middle. It’s not exactly the ideal surface for an old and battered wheelchair and its equally ancient occupant. The track takes us across the fields and under a little railway bridge to the village. It is known by locals as ‘the back way’.
“Oh, we can’t go down here,” mum cries out in distress, “it’s too bumpy!”
It’s probably 20 years since she last walked down this track with my father, when they were still able to enjoy an active life. However, I regularly walk down here whenever I can as it also leads to the river. I know every inch of it. I’m feeling adventurous but I know I will have to take things in easy stages.
“Why don’t we just see how far we get?” I venture.
Dementia has changed her personality. She has adopted the survival mechanism of laughing at herself when she can’t remember things, which is quite sweet. It is also something I never imagined would happen.”
Unlike dad’s, mum’s dementia is more a case of loss of short-term memory. An extreme case. She can dress herself with help and use the toilet but she can’t remember having a Covid vaccination two minutes after having it. She sits there expectantly with her sleeve rolled up until a kind nurse tells her ‘It’s already done’ and she is pleasantly surprised and relieved.
Dementia has changed her personality considerably. She is so grateful for anything I do for her and so tolerant, that most of the time she is pretty easy to care for. She has also adopted the survival mechanism of laughing at herself when she can’t remember things, which is quite sweet. It is also something I never imagined would happen.
We have been on the track for quite a while, and we are slipping into the continuum of a long road trip. It’s starting to feel like we’re in a buddy movie when all the initial grouches have been ironed out and the travellers have become a comfortable unit. Mum’s being pushed and has become used to the off-road experience and I’m getting the exercise I so badly need. Mum has got eagle eyes and spots potholes as if they were land mines.
“One on the left here!” she calls out obligingly whilst clinging expertly to her armrests and swaying with the bumps. Charmingly, her main concern (or perhaps her secondary one, after falling out of the wheelchair) is that all of this entails hardship and exertion for me.
A pattern of dialogue emerges:
“Are you sure you can manage? I’m very heavy!”
“Yes mum, this is really easy for me, don’t worry.”
“But I’m such a big lump to cart about, are you sure you are alright?”
I laugh and remind her that she is no longer a size 18. That she has lost so much weight she is now a size 12. She doesn’t believe me, of course. A lifetime of dieting and being overweight is still there, quietly distorting her sense of herself. In her head she is still a ‘heavy lump’. I feel a twinge of something, somewhere between my heart and my stomach.
To prove to her just how light she is, I start to jog. The track has flattened out a bit and we are finally out of the intense sun and in the deep shade of horse chestnuts and field maples. This feels so much more comfortable, so I can carry on now with the job of distracting her from her worry. I do this by pointing out the swallows screeching anarchically and the flints peppering the chalky pockmarked parking area. This is where dog owners leave their cars to enjoy walks along the River Thames.
So focused are we on the important activity of navigating this lunar landscape that it is a few minutes before we speak again. The silly little wheels on the front of her wheelchair skiddle this way and that. There are a couple of near misses where the wheelchair refuses to swerve neatly round the edge of a hole and threatens to tip over. Mum copes extraordinarily well, leaning obligingly without much complaint until suddenly the going gets a lot less tough. We find ourselves on a well-kept Tarmac lane.
“Not long to the village now…” I suggest, experimentally, feeling rather hot and sweaty and suddenly incredibly thirsty after my Formula One-style driving extravaganza. Mum tucks her blanket in tightly around her knees and laughs, “Well, we’ve got this far…”
Her face is flushed and delighted and I know the time is right for my pièce de résistance. I am so glad I decided to bring my purse with me. I come round to the front of the wheelchair so she can see me properly.
It almost feels like ‘the old days’ when she and my dad used to have people over. Rare family gatherings where my father’s slightly disreputable sister (my favourite aunt) would arrive in a flurry of merriment and fun.”
“Shall we call in at the Catherine Wheel?”
I look directly into her small, sharp eyes. Even at this age, the blue colour of her iris is still intense and striking. Her face lights up. We both grin at each other, squinting in the light.
“For a G & T?” she says.
“Of course,” I say.
So we make our way merrily down into the village, assured of a novel pit stop and delightful refreshment. It almost feels like ‘the old days’ when she and my dad used to have people over. Rare family gatherings where my father’s slightly disreputable sister (my favourite aunt) would arrive in a flurry of merriment and fun and shatter the serious, disciplined atmosphere in our house. She always brought with her a few bottles of something ‘special’ to help relax the ‘regime’.
This time, we have gone through this rite of passage together and something has happened – doors have been unlocked. It’s such a long time since I felt like this. In fact, now I come to think back, this might even be the first time my mother and I have ever had fun together, just the two of us.
My month with mum so far has consisted of weeks of endless cups of tea and relentless worry that she has not been drinking enough liquids and will get another urine infection. When that happens, she will start to talk nonsense. Then they will give her antibiotics which will knock her off her feet for the rest of the month. This will result in her losing more weight, lying in bed longer and longer and receding back into that hinterland of being only just present. Of being only just here.
I’ve just taken a ‘selfie’ of both of us grinning behind the huge, rounded stem glasses they give you these days for a G&T. The pub garden is shady and relatively empty. The condensation on the glasses and the clinking of the ice is comforting and familiar. It’s 4pm on a weekday afternoon and we have the place to ourselves. We follow the rather large drinks with a shared pizza, unexpectedly created for us in a little wooden shed in the pub garden by two chirpy and surprisingly friendly young men. They make mum giggle like a schoolgirl with their banter.
I can’t remember a time when things felt so good. The corners of my mouth are curling upwards, and so are the ends of my sentences. I’m enjoying the delights of a hot summer day and feel relaxed and positive. Mum is just about managing to sip her drink from the heavy G&T balloon glass full of ice cubes. The ice cubes swirl and the intense light sparkles off the glass and onto her face. She looks around and suddenly exclaims that she’s been here before. She looks at me and grins. She’s back from the hinterland and she’s properly here again. I’m happy and I’m properly with her, too. I make a note to myself: we need to have more adventure and fun in our lives. We must do this again – soon!
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Sally Turner was born in Hammersmith, where she used to watch the late night London Underground trains passing her bedroom window and write poems to the moon. She knew from the age of 10 that she wanted to be a writer but the confidence to be one always seemed to elude her. Most of her work is still unpublished and lies stuffed into drawers and old cardboard boxes. She lives on a narrowboat in Yorkshire and is often woken in the morning by the gentle tapping of Canada Geese on the side of her boat.
Sally studied English Literature at Leeds University, followed by a postgrad in teaching English and Drama at Bretton Hall College. Her first job as a teacher was in a Wakefield mining community in the middle of the miners’ strike and she has worked with inner city, rural and refugee populations all over Yorkshire.
After a dramatic accident skiing off-piste in France in 2010 when she broke her neck, she was lucky to avoid being wheelchair-bound and undertook her own rehabilitation by training to be a yoga teacher. Since then she has been teaching yoga and yoga therapy and is particularly interested in promoting brain longevity with respect to those at risk from Alzheimer’s disease and other dementias. ‘Off road with mum’ was shortlisted for the inaugural Tom Grass Prize.
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The Tom Grass Spirit of Adventure Literary Prize awards short standalone prose in either fiction or non-fiction, inviting writers to grapple with the spirit of adventure in any way they interpret. It is dedicated to celebrating the spirit of Tom Grass, a multitalented writer, avid reader and fearless traveller. Tom travelled the world on foot, bicycle and motorbike, and lived for long periods in Africa and India. He studied History at Oxford and wrote in many forms, from novels to screenplays to advertising copy. His entrepreneurial endeavours ranged from producing hammocks and baskets in Rwanda, to working for the Nike Foundation in Kenya promoting female empowerment. He co-founded a film production company and a leading wellness business. His novel Twist was made into a film starring Michael Caine, Rita Ora and Raff Law. He also trained as a therapist, and was interested in the healing power of psychedelics. Tom struggled on and off with depression through adulthood, and tragically took his own life in 2024.
Funded by donations from friends and family and sponsorship from Steppes Travel, the Tom Grass Prize also raises money for the Charlie Waller Trust and the Enaikishomi School and Community Project, organisations that align with causes close to Tom’s heart – mental health, literacy, and creating opportunities for individuals from all walks of life.
About the prize
The 2025 winner and runners-up
The 2025 shortlist in full
instagram.com/tom.grass.prize
