For years Coronation Street actress Shobna Gulati had a strained relationship with her mum – but it was caring for her through dementia that brought the tender moments of closeness Shobna had always craved.
I am in a now empty house, which once belonged to my mum and dad and was the family home, my place of refuge with my newborn son, my mother’s refuge as her mind began to fail her, and, eventually, the place my mother died.
I have come back to sort out her things. I find myself looking through her old-fashioned green and dark red photo albums where I discover images of my sisters as babies. Their ‘first’ everything, family outings recorded and beautifully inscribed underneath with my mother’s precise, neat handwriting noting dates, people and places. But the pictures of my mother and me when I was a baby are extremely rare, with few to be found even as a young child.
It wasn’t just the two sisters – Hema and Sushma, six and four years my senior respectively – who came before me, who dampened my mum’s enthusiasm for babyhood mementoes. Nor that there were three of us aged six and under. It was because I was yet another girl. In early November 1970, a little brother arrived. My parents named him Rajesh, which literally means ‘ruler’ or ‘god of Kings’; he was their miracle child.
It was the luck of the draw that he got to be the first son and I was the third daughter. I spent most of my childhood trying to please my parents and be everything for them. Craving validation and getting attention shaped me for decades. I’d always be desperate to entertain and be what others wanted me to be, even when there was little to no chance of success. I became used to trying regardless – especially for my mum. I was the squeaky wheel in a well-oiled unit, the ‘pipsqueak’. I questioned everything. One of my names was ‘Little Miss Controversy’ because I’d pick fights. They worried I wouldn’t become a doctor, a lawyer or an engineer… I’d be the one that would disgrace the family.
It was in my late 20s that I became single, separated from my husband and pregnant ‘out of wedlock’ all in the space of a few months. The world caved in. Unplanned, expecting and alone. My siblings were disappointed about the pregnancy and felt I should be disowned. They were vocal about their feelings towards me and ‘what I had done’. There was a time during the pregnancy when I got some worrying test results suggesting that there might be an abnormality; my brother, as a newly qualified doctor, said I should consider an abortion. The shame of stepping out of what was expected didn’t disappear after the birth. And it was too much for everybody to process.
But it was my mother who was there for me when it all happened. When my marriage broke down, she said, ‘I know my daughter’. She had felt it wasn’t right from the beginning, that I’d rushed into it. She told me she felt a level of responsibility because I’d been looking for someone to fill the hole left by my father’s sudden death. (The love of my mother’s life, he had died suddenly in his sleep, aged 49, during a visit to see family in India when I was 18. Mum was a widow aged just 45.)
But the traditional lines I’d crossed ran so deep and I had this feeling that I had broken everything, not only within my own life but in my family’s lives and the wider community as well. The culture of shame among North Indian Punjabi and wider South Asian communities meant that the dishonour I’d brought on myself for getting divorced and also having a baby outside marriage was shared by my whole family.
Despite the pressures of her other children, my mother defended her choice to look out for me and my baby, Akshay. She cared for him like her own son when I went back to work. I felt my siblings were constantly judging me for leaning on Mum. Or was it the guilt that I was carrying? I wanted to provide a steady life for us all through working. It was necessary for me to become more independent in order to try to take some of the pressure off Mum, and some of the ‘shame’ off me.
Just before Akshay’s third birthday, I got the call from Victoria Wood’s team for a new sitcom called Dinnerladies. I called Mum to say, ‘I think our lives are going to change completely.’ She said, ‘I do hope so, my love.’
After the second series ended, I landed a role in Coronation Street and that marked a transformative moment in our relationship. Not just because Mum was such a mega fan but also in other ways. For one, I didn’t have to work away. I would be at home. Life would become more stable for all of us. The story pretty quickly went from everybody talking about me in such a gossipy way because of my failed marriage and baby born out of wedlock, to Mum saying, ‘Well, they’re all calling me now because you’re on television, aren’t they?’ She’d been bathing in my shame for so many years that it was life-changing for us to now be able to bask in pride.
Dementia was entirely incompatible with my mother’s world view and her place in it.
To Mum the word itself simply translated to mean that she was demented. Dementia to Mum meant a total and utter loss of control, which was the antithesis to every facet of her identity. Any kind of mental decline, outside ‘regular’ old age, is a massive taboo in my community where mental health struggles of nearly every kind are often brushed under the carpet and hidden within families.
There is no one experience of dementia. In fact, there are as many versions of dementia as there are minds which suffer from it. While there are broad strokes of symptoms, it evades a clear trajectory or prognosis, which often makes it very difficult to diagnose.
In Mum’s case, it was more about the small clues we had to piece together. One of the hints was the way she would doggedly cling on to any family ‘slights’ and arguments from the past. We had daily rows over whether or not she’d had her medication, the problem being that Mum would often forget what she had and hadn’t taken.
In January 2017, Mum was officially diagnosed with vascular dementia. She’d had an MRI scan which showed small, historical strokes. Mum had chronic infarcts (cerebral infarctions are areas of necrotic brain tissue resulting from a blockage or narrowing of arteries) in parts of the brain related to the functions of spatial awareness, language, thought processing, and in the area that relays information to the cerebellum (balance, walking, coordination and so on). But Mum point-blank refused to accept it. We had been brought up to believe that we had a cultural responsibility and duty to our family until the very end, no ifs or buts. A care home just wasn’t a consideration for us. I felt all along I was the one with the debt to repay within my family so, whenever I wasn’t working, I would be with Mum.
During the caring years I did as I had done throughout my earlier life: I shifted and focused my everything to centre on my mother, to the detriment of pretty much any other thing in my life.
Caring for your mother is not the same as when you care for a child and you just take them in hand and do what you know is best for them. This is your mother, the woman who has been in control of everything your whole life and, what’s more, doesn’t even know what is happening. Or else she knows but doesn’t want to do anything about it. That we will never know.
On a deeper level sometimes I felt that we were taking away her dignity as we would do anything we possibly could to keep in line with her non-acceptance of her condition – such as secret hoovering, cleaning and my habitual night-time ironing and setting out of her clothes – to make her believe that she was keeping things together, that she ‘didn’t really need’ our help. It’s harder to do that when what you have to do, on occasions, is so personal and intimate.
It became hard to define the passing of time. It was as though both our sense of the hours ticking by began to blur in and out of focus. And, just as she had secretly been ordering and recording all the press clippings of my life, I began to do the same for her, too, recording her memories on the notes of my phone. Over time the memories she recalled became more and more concentrated and distilled from the rest, and she would return time and time again to her childhood. One thing I noticed was that when she talked about her childhood, it was as if she inhabited her body as a child. Her face would change and she would somehow shine with a renewal of youth. It was like the memory was living in her and emanating from her, and she was watching the events play out in front of her eyes – she was seeing things as if they were happening for the first time.
Keeping track of where Mum was – or, more accurately, which version of Mum she was at any point – could be exhausting. It felt like her memory was a singular chain in which the links had been broken, put into a bag and shaken up, then randomly reassembled in an order that made no sense to anyone. All day long she went elsewhere, to a different place and a different time, which would bring her to a completely different time in the present.
She stopped living in our shared moment. She had always been full of advice and reprimand but now she often wasn’t plugged in to what was going on around her.
Life became punctuated by rare but beautiful moments of tenderness between us, and moments of closeness that we had never experienced in our life together before. They would appear one day totally whole and beautifully painted like a butterfly that only lives for a day. But they fluttered in and out of the house and made the tension, shame and loneliness all seem worth it.
Because of all her medication, Mum would often have headaches so I would massage her head and she would just love that. That kind of physical intimacy hadn’t been part of our lives – I would never have touched her like that before, but I knew it was easing her discomfort and quietening her whirling mind. I even started kissing her forehead. She’d look at me as if to question it, but her eyes were full of the comfort and fondness from it. I introduced a different way of us being together after years of keeping our distance.
Every day was different, and every day would also have its hard moments. But you would still see glimmers of the woman you had lost in among the new women who had begun to take her place. They were the women she had once been, the girl she once was, the happy contented mother or wife in her house, to the disquiet of the woman with dementia. We sat there side by side, cup of tea by cup of tea, breakfast, tablets, lunch, snack time, dinner, drink of water or no drink of water, loo visit by loo visit, from one moment of clarity to an angry outburst, to a near disaster to laughter, which left us both silently shaking. Her recollections of her glamorous social life in stunning saris arm in arm with my father were now substituted by her memories of being the school child in red buckle uniform, red ribbons and black polished shoes. We found our intimacy in it all, as we rowed out together into the unknown of her illness never knowing what could wash or which wave could crash over us next. But for now, we had one another, and we had those butterfly moments, too. I just lived one wave at a time.
My mum died on 3 November 2019. I’d been in the trenches with Mum for years and we had come to an understanding. I knew where she was at in the end and we had said and done everything that needed to be. I understand that there were difficult memories too but, in the end, we had made peace. I feel so lucky that I had 25 years to get there with Mum. Twenty five years to redeem myself for what had happened in our lives. And that is a gift. I don’t think Mum or I consciously decided to conciliate, it’s just how it happened. We were always there for each other, my mum and me. Whenever we needed each other, we came through. I know she was at peace in her final moments and that is all that anybody can hope for.
I realise that this woman, who I had for so many years failed to please, has shaped every edge and contour of the woman I am today. While I have my own idiosyncrasies, underneath the veil of independence I’m her, just 28 years younger.
The two years I cared for Mum will shape my life. The time we spent together will make me live a different way. I’ll be more fearless.
For it’s not what you forget, it’s what you remember. Mum never forgot who she was, right to the end, even if she couldn’t remember how she had got there. Even though these journeys, the love for my father, the raising of her children, the joy and strife that life brought in the years after he left her may have been obliterated by her disease, she remained steadfast to herself, even as her own history abandoned her. My mother’s memories are now my stories and memories, more important to me than to her. They have become part of who I am.
This is an edited extract from Remember Me? Discovering My Mother As She Lost Her Memory by Shobna Gulati, which is published by Cassell, price £16.99*.