This Mother’s Day – just like every other day of the year – I’ll be thinking of my lovely mum, Glenys, who has lived with dementia for over twenty years. She’s in residential care now in my home town, and I’ll visit her on the day, as I do most weekends and public holidays. For many years, until 2011, I was her sole carer in our family home and by distance during the week (my own flat being 100 miles away in London).
I’m a drama scriptwriter by profession, and in May 2017 my play The Things We Never Said went out on BBC Radio 4, starring Lia Williams and Siân Phillips. It later won the Writers’ Guild Best Radio Drama Award 2018. In the past, mum would have been thrilled to share such news, would have tuned in with excitement, and called me after to enthuse about the production. Even if it was not to her taste, I suspect she would have praised it anyway – for I was her beloved daughter.
Today there is none of that. Mum has never heard the play or even known it was on; I didn’t tell her, as I knew it would mean nothing. And yet it’s all about her, about “us” – the people we were, and the strangers we have become.
Such fracture would have been unthinkable to either of us twenty years or more ago. Both only children (mum widowed, I single), we were each other’s only immediate family, each other’s best friend. But somehow, in those twenty years, the umbilical cord of all our life’s experience started to detach.
Mum has been in care for over seven years now, in two different homes. The rupture began long before that. I see it now, in odd, malevolent looks she would sometimes cast me, as we sat at home watching TV; in strangely inappropriate gifts, more suited to a child; in wild rages and accusations of uncharacteristic vitriol; in the bewilderment on her face, when I let myself in with my key. Now I see: already, she didn’t know who I was.
Back then, in our family home, she still had the social facility to cover it up, pretend to be “au fait” (one of her favourite phrases). She took her cues from the context: this woman is in the house; she knows me; I must know her. And (crucially) there’s no-one else here…
Looking back, I realise that around this time she stopped driving conversation. Always a prodigious and entertaining talker, she became not mute, but unusually tight-lipped. As if there were some passive-aggressive sulk going on beneath the surface – a silent antagonism that said I had done her some inexplicable wrong. When I served her meals, she would thank me courteously, somehow too polite, ingratiating almost; and as she ate, she might look up now and again and comment, “this is very nice, thank you”, with a gracious nod of the head. I couldn’t put my finger on it at the time, but now I see: she was addressing me as a waitress.
Yet this unspoken estrangement didn’t make her less dependent on me. On the contrary. She became unbearably clingy. Increasingly unsteady on her feet, she would refuse a stick on trips out, preferring to clutch limpet-like to my arm. At home, I could hardly leave the room by myself, let alone the house. On days when I had to drive back to my own flat in London, it would take until mid-afternoon to extricate myself from her maddening ploys to stall me. As I finally pulled away down the road, I would find myself screaming in the car.
My mother’s as-yet-undiagnosed condition trapped us both and locked us away from the world. Her intense, suffocating neediness convinced me that I was uniquely necessary to her and any attempt to regain my own independence would mean abandonment of her. It caused terrible guilt and trauma when those needs became too great for me to manage alone and I had to place her in care. I feared she would never settle, the distress would be too much. But in fact she has done well.
She needed someone with her 24/7. She needed someone. She didn’t need me.
If you are caring for someone who has moved into residential care or is facing that transition, Dementia Carers Count offers a special ‘Home to Home’ course tailored to this stage of the journey and end of life issues, among its range of core support courses for friends and family carers of people living with dementia. Contact us for details.
Ming’s play, The Things We Never Said, is not currently on BBCiPlayer, but can be downloaded to read from the BBCWritersroom Radio Drama Archive. You can also hear an extract from the radio production and discussion on BBC Radio 4’s Fortunately podcast with Jane Garvey and Fi Glover (@ 10’ 33”).