Dementia Diary: ‘I’m sorry. I forgot you were my daughter’

Keeping Mum: In the first of a series of columns, Anthea Rowan lifts the lid on a searing but formative experience

The first time my mother forgot who I was, who I am, came out of nowhere. At breakfast time, as she sat across the table from me with her tea and toast, she knew I was her daughter. By evening, it had gone: something had apparently cut clean through our relationship, like scissors shearing silently through silk.

Remind me, she said, leaning into our conversation, “because I don’t remember exactly: When did we first meet?”

I thought she was joking. I reacted as if she was; I laughed. Then I saw her face; it was plain she wasn’t. And I wasn’t sure who was more shocked. Or what was more shocking to her: that she had forgotten I was her daughter. Or that I was.

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Afterwards, as I tried to make sense of it all, I wondered when the memory lapses my siblings and I dismissed affectionately as “forgetful” had slid sinisterly towards clinical.

It’s easy to blame so much on senior moments: She’s old. She’s tired. Perhaps she’s dehydrated, and I nudge a glass of water in Mum’s direction.

But forgetting the names of some of the places you’ve lived, forgetting the names of which grandchild belongs to which of your children, is quite different to forgetting who those children are.

I reeled afterwards. When your mother forgets you, it’s as if roots have been pulled up and shaken loose. If your mother doesn’t know you, who are you? If your mother has carved you out of her past, what’s your history. To know and love a face plays a fundamental role in human connection. Suddenly my mother didn’t know mine.

Why do you think I call you Mum, I asked, hoping common sense might jog the memory?

She considered my question for a nanosecond: “I thought you were just being polite.”

I spent hours then, curating a collection of photographs, pictorial evidence of who I was to her and her parents and her siblings as if I must provide layer upon layer of proof of our kinship. And then I tailed her, laptop open to my pitiful PowerPoint: “See, there’s me and you, Mum. And here’s me and you and your mum. And me and you and my dad, your husband”. Me, me, me. Me and you, Mum.

She wasn’t convinced. I hear her on the phone with her sister, her forgetting has bloomed in proportion to my desperation as indignant resistance: Who is this woman anyway?

My eldest daughter, concerned at my distress, asked me how it felt.

It did not feel the same as my father’s death. But it felt similar. A separation. I didn’t yet understand — I will learn, later — that living with dementia in a loved one is often compared to grief as bits of a life lived together are peeled away and lost.

And it felt alienating: when dad died we were in it together. This seemed selective: why had my mother forgotten me, not my brother or sister?

Later — for there are many things that come later as I play catch up in my understanding of dementia — I will learn that dementia interferes not just with memory but also with the brain’s ability to comprehend what the eyes see. It compromises our uniquely human high-level visual processing; a person with dementia can look into the face of a loved one — a daughter — and fail to recognise those intimately familiar features. My mother knew she had a child by my name. She just didn’t believe I was her. “You look too old,” she insisted, “you look even older than me”. I felt like an abstract of myself.

Eventually, even more cruelly, this face blindness might extend to sufferers themselves, so that they don’t recognise the reflection that stares back at them. When that happens, Dr David Robinson, consultant geriatrician at St James’s Hospital tells me, mirrors in a house may have to be covered up or removed, such is the distress they cause.

Why so sudden though? Why did Mum know me one minute and not the next? In her beautiful memoir, Keeper: A Book About Memory, Identity, Isolation, Wordsworth and Cake, which describes her mother-in-law’s dementia, Andrea Gillies writes, “there is change afoot and changes come as steps and not as slopes. There are sudden downward movements’. I have learned she is right. The decline into dementia is not a gradual slide downhill. It is jarring. Breathtaking. It’s not even always downhill: sometimes you are jolted hopefully back to the surface.

Two years after that first occasion, my mother has forgotten I am her daughter and then remembered exactly the person I am to her countless times. The first time was just a few weeks later and coincided with my birthday. She wished me happy birthday belatedly; my brother reminded her.

“Thanks, Mum,” I say.

Also, she continues, sounding sheepish, “I’m sorry. I forgot you were my daughter”.

She delivers it in the same tone you might adopt to apologise for something unexceptional: “Sorry. I forgot your birthday,” say.

That’s okay, Mum.

It wasn’t. Not back then. But it is now; now I understand that her forgetting is pathological, never personal.

Today, when she needs reminding of who it is on Skype as she holds her iPad aloft, my brother or sister on speaker phone, I remind her which of my siblings has called, and who they are to her, to me. Then I giggle and say loudly enough, so that whichever sibling is on the other end of the line will hear and laughingly protest, “but I’m your eldest, ma, and I’m your favourite, don’t ever forget that: I’m your favourite”.

And Mum laughs too.

Instagram: @anthea_rowan