For a long time I’d felt guilty about putting my mum in a home. The decision, in 2013, was made for her own good to protect her from my father.
He was not physically violent, but she had Parkinson’s dementia and as her condition progressed, evidence of neglect and rough handling had mounted to back up the numerous examples of his cruelties, mad rages and controlling behaviour over the years.
Social services had asked me to intervene, so I did, for her sake.
I told her we’d take her home in a few days, and that, meanwhile, she should think of the care home as a holiday. But even with the fog of dementia, she understood it was all wrong.
As I left her there on that first day, bending to kiss her on the forehead, I saw her face crease with emotion. She was stumbling over her words, but I heard her repeating ‘Don’t . . . don’t . . . don’t . . . ’ as I walked away.
I felt my heart breaking.
Shaun Deeney recounts caring for his mother (pictured), who has Parkinson’s dementia, after freeing her from a care home
After that, I cut off all contact with my father. I had tried to buffer his worst excesses for years. But now, with my mother safely out of his reach, I was free of all that.
He visited Mum a couple of times. But when the doctor insisted he give up his driving licence, he stopped going altogether and took to his bed, angry with the world and especially angry with me.
Regular visits to Mum in the care home showed a rapid deterioration. The progressive effects of Parkinson’s dementia had made her frail and, soon, she could no longer stand, walk or feed herself. Each time, she would beg me not to forget her and not to leave her there.
Although I accepted that Mum would be likely to end her days there, I made promises that I would one day bring her home. I hated myself for doing so — and never thought for a moment I’d make good on those promises.
Then, 18 months later, I got a call to say my father was dying.
For the next three weeks, I visited him in hospital daily, wilting in the warmth of the ward, listening to his laboured breathing, dabbing ineffectually at his cracked lips with pink foam swabs on white lollipop sticks.
Finally, I called my younger sister, who flew in from Canada. Our father died the next day. Then, sitting at his bedside together, something extraordinary happened: my sister and I made the decision to bring Mum home. Our father’s sudden death meant there was no longer any obstacle in our way and no reason not to care for the mother who cared so well for us; no reason not to spend more time with her and get to know her without our father’s overbearing presence.
Not many people can make a decision like this. But there was nothing to prevent me becoming Mum’s carer if I chose to.
My sister had a career, a partner, a mortgage and lived in Canada, so we agreed she would not be on the front line — but she promised to help with money and moral support.
Shaun said his motives and ability to cope with the pressures of becoming a carer were frequently brought into question by the care home and social services. Pictured: Shaun as a baby, with his parents
I was in my mid-50s and young enough to cope. I had no partner (I am divorced), no regular job (I am a writer, so it doesn’t really matter where I live and work) and my two daughters were in their 20s and independent.
And, more than anything, I really did want to take Mum home.
Not only was our plan clearly suspect in some people’s eyes but, at times, it seemed as if I was personally suspect, too. My motives and my ability to cope with the pressures of becoming a carer were frequently brought into question by the care home and social services, and there were few votes of confidence from anyone at the time.
My gender and my proposed role as a carer — despite statistics that tell otherwise — were considered not just uncommon, but borderline unnatural. It made me laudable and appealing on the one hand, but also ‘one to watch’.
But after six months of paperwork, planning and preparation, Mum’s homecoming day finally arrived.
It was April 2015 when I finally pushed her wheelchair into the garden of the Surrey bungalow she once shared with Dad. I got the sense that she was more awed by being outside than by the sudden shift in location.
I was high as a kite and just couldn’t seem to stop talking.
Mum said nothing. She did not even acknowledge me.
Yet that first day was particularly memorable because Mum choked on my lasagne. I managed to spoon in maybe two mouthfuls before she was consumed by coughing.
The technical term is dysphagia; a disruption to the swallowing process caused by dementia. The reality is your loved one apparently choking to death in front of you and, what’s worse, because of you.
Shaun said in the first few weeks of caring for his mother (pictured), he would lie awake at night with his bedroom door open and hers
I was very scared, angry with myself, and alone.
What had I been thinking? How could this stupid plan of mine ever succeed? Did I really believe caring would all be about homemade food, shared memories and happy days in the garden together?
In those first few weeks, I would lie awake at night with my bedroom door open, and hers. And I’d listen, hear nothing and wonder . . . is that good or bad? Is she alive or dead? Am I really cut out for this? What if I get it wrong? What if all those warnings turn out to be right?
But, gradually, I began to realise that in order to care well, you have to worry less. You can’t fix everything. Some days are good, some not so good; sometimes you can laugh together and sometimes it is all too much and what you want to do is weep.
We settled into a rhythm and, three weeks into my new life as a carer, I began to realise the hardest part of the job is that every day is the same. There are no weekends of leisure, no time off for good behaviour and no respite for Mum or for me.
Visits from professional carers, who come in three times a day, help to punctuate the unchanging routine with their comings and goings, but the hours are long.
For much of the time I felt tired, as if I was jet-lagged or hung over.
It’s not the chores that are tiring. That is when you feel useful and engaged. It is the hanging around, the waiting. I was on yellow alert all day long: watchful, even nervous, but with no action I could take to bring the alert level down.
In the evenings, I didn’t watch television much. I was just too exhausted and the outside world seemed too remote to comprehend.
Shaun said like many carers, he began showing a disregard for the basics of self-care tantamount to a dereliction of duty
I did polish up a stoical attitude, not simply because it is required but because misery is ugly and I preferred to keep a lid on things. But, inside, part of me was worryingly empty. I’d smile like Frodo, deliver magic pills and potions like Gandalf, but Gollum was always lurking in the shadows.
I could detect a new kind of simmering discontent, a nascent sourness I didn’t want to acknowledge because it sat badly with the selfless suburban hero I had somehow become in the eyes of others. And because there was nothing I could do about it anyway.
It soon became clear that, like many carers, I had been showing a reckless disregard for the basics of self-care tantamount to a dereliction of duty. And there were clear consequences.
My middle-age spread had crept inexorably towards becoming an obesity issue, albeit localised in a way that made me appear quite ridiculous, with a rubber ring of fat worn around what I used to think of as my waist.
My inner Gollum would cradle and stroke the tobacco pouch, whispering to me that to smoke is my consolation, my compensation.
If I sound a little hunted, I don’t mean to complain, only to explain. It’s not all bad. Not at all. There’s the satisfaction of a job well done. There’s a role, clearly defined, obviously useful and apparently selfless.
Now, six years on, Mum is the centre of things. She is doing well and I get compliments on her wellbeing, but I know I am being judged on her longevity and my ability to stay the course.
Shaun said his mother is now doing well and he gets compliments on her wellbeing, but he’s aware of being judged on her longevity and his ability to stay the course
Her muscles have contracted and atrophied, so her legs can no longer straighten. There is little strength in her arms and her conscious control of motor functions has all but disappeared. She is also doubly incontinent, and her dignity and privacy concerned me from the start.
Even with the dementia, she could be fabulously, surprisingly lucid from time to time. How would she feel if she became fully aware that it was her son who was washing and changing her?
Thankfully, the carers are fully aware of Mum’s dignity in this respect. Most shower her alone while I make coffee.
Sometimes I help, but the intimate washing always falls to them and I make myself useful by holding the shower head, wrapping Mum in towels or wheeling her back to bed.
Where I come into my own is when we are towelling her dry. That’s when I take my chance to rub her back, talking to her all the while and telling her how she used to do this for me when I was a child. The faster I rub, the more she loves it, and she often giggles with delight until my arms tire.
There is something special about having that intense personal connection as part of the care, alongside the professionals, and the arrangement works like a dream, most days.
I consider myself the most fortunate of carers because Mum will often sleep through the night. If she does wake, turning her pillow or stroking her head will often send her back to sleep.
I’ve noticed certain names will spark a look of recognition on her face. In the evenings, her spirits often brighten and we can share a joke or pretend to spy on the neighbours through the bedroom window, or talk about the past.
At times, she can be positively coquettish, particularly if my sister or my daughters, or one of the carers, is here with us.
Shaun (pictured) said his mother is often unware that he is next to her, or even that she is at home because of the dementia
If others laugh, she laughs along, her social brain fabulously alive to the nuances of interaction with others, to manners and humour, to subtext and irony.
Together we’ll listen to music and I will pretend to be Frank Sinatra. Mum often recognises one of the songs.
Sometimes, I get nothing in return, sometimes she says ‘come on, hurry up’. But often she smiles or even giggles. Once or twice, she has called me by my father’s name.
I like that music helps to bring Dad into the conversation. It feels right to acknowledge him, and her love for him.
But the dementia means she is often unaware it is her son next to her, or even that she is at home. We can seem like strangers to each other despite our shared history.
There is so much I would like to ask her and so much I’d like to thank her for. It was she who put me and my sister to bed at night; she who made breakfast in the morning.
She was quiet and competent, sweeping behind us all, ready with plasters to salve a graze, a consoling hug for school reports, and homemade lemon meringue pie.
But she never talked of her own needs and when I was a boy, I took her for granted entirely.
I am not here to pay her back for all the years of love, worry and kindness. But it occurs to me as I watch her, absorbed in her own world, her fingers moving nimbly to pinch and gather the blanket, intent on some purpose I cannot fathom, that I can at least recognise and celebrate all she has done for me.
Our lives are circular. We begin our existence on the planet in the care of others and will likely end it in the same way. We are making the same journey from cradle to grave, from being cared for to caring for.
Shaun said his mother (pictured) never spoke about her own needs when he was a child, and admits he took her for granted
Mum is 87 now and life, for her, is winding down and wearing out. I am witness to a quadrant of it in which atrophy is the governing principle and death the inevitable end.
Before I make supper, our evening ritual is gin and tonics and cheesy snacks together. At that time, I wonder at the strange good fortune of our ending up here together.
I knew the outdoors would be good for her and she knows it, too. The other day, when the weather was mixed and I’d put a shawl over her, I said: ‘You look like a little Russian babushka; are you sure you don’t mind being out here?’
She hardly ever speaks, so her lucid reply surprised me. ‘I love being outside,’ she said.
The woman beside me in the garden as the sun dips behind the bungalow roof is certainly very like the woman I used to visit with my children; she was quiet and subdued, and when I helped her in the kitchen and asked quietly if everything was OK with Dad, she would smile with tears in her eyes and tell me not to worry. This woman is like her, but not quite her.
It occurs to me that over the years my mother and I have spent very little time alone together, just sitting.
I don’t know if she wants G&T or a cup of tea. I could ask, but such questions seem to set up a conflict in her mind. So I guess.
I have found that using a mixture of experience, imagination and intuition can, with someone you have known and loved all your life, mean you end up sharing simple moments of pleasure and reflection.
There are carers whose loved ones no longer recognise them or, worse, resent the care. And here am I with a mother who, on at least two occasions, has said to me, ‘You’re wonderful’.
Adapted by Louise Atkinson from Love And Care, by Shaun Deeney (£16.99, Endeavour); © Shaun Deeney 2021. To order a copy for £15.12 go to mailshop.co.uk/books or call 020 3308 9193. Free UK delivery on orders over £20. Offer price valid to 09/08/2021.