Dementia’s Daughter

September 20, 2024

Sasha Neal (@dementiasdaughter) is an audio visual producer and writer who lives in London, UK. She provided caregiving support to her mother and father.

Thinking about the last ten years or so dealing with my parents’ dementia, I ask myself what I wish I knew at the beginning of this very long decade. And I can’t resist looking a little further back, to my family’s “Before Dementia” era, when both my parents were alive and well. 

We were happy then, I think. Of course life had its ups and downs; its challenges. It wasn’t easy when my parents divorced, for example, but we were blithely ignorant of dementia and how it would infiltrate us. How it would steal away my dad, Syd, who was diagnosed at 74, and my mom, Sophy, diagnosed at 68. How it would stop them working, travelling, writing, keeping fit and, in my dad’s case, caring for young children. The Before era seems more and more distant now; less real, like sun-faded, over-familiar photographs. 

Now, although I want to guard that time in my memory, protect its innocence and the optimism that bad things wouldn’t happen to us, I do wish I’d known more about dementia, especially earlier onset dementia. I wish I’d known how common it is; how it starts showing up. 

And there are a couple of things I wish I could tell my younger self. I wish I could tell her to have that awkward, difficult conversation with our mom when she first started repeating things and getting in a muddle. She used to laugh a lot, making a joke of her slips. I think of how hard she worked to shrug things off. She sometimes mentioned that she couldn’t sleep; that she’d lay in bed in the small hours, her mind racing with anxiety, but I didn’t know why. 

I’ve always thought our mom protected herself through denial, but now I know it was more complicated than that: she was trying to protect us, too. And it’s only recently that I’ve accepted my own denial. My dad was already in a care home by this point, progressively non-verbal, needing to be fed and changed, and I couldn’t face any suggestion that my mom might be heading in the same direction. She’s stressed, I told myself. I don’t want to worry her. 

But I wish I’d said, ‘Mom, I’ve noticed these things, and I wonder if we should go and talk to your doctor together?’ If we had, perhaps she would have gotten anti-depressant and anti-anxiety medication sooner, perhaps we would have had more time to research and look into anything that might have helped slow her Alzheimer’s down. Perhaps with our ongoing support she would have faced the situation while she was still cognitively able to and not hung on in the isolation of her fear. And if we had had those honest conversations, maybe we would have had other discussions, about what she wanted for her care and what sort of choices she would want us to make for her when the time came.

Even though I was frightened too; even though I couldn’t believe that this thing — this disease — could happen to us twice, I wish I could tell myself: Have the courage to look at what’s happening; to really look at those little memory lapses and moments of confusion; have the courage to look Mom in the eyes and say, ‘I think there’s something wrong. Can we talk about it?’

I’m not sure it would have been possible to do anything differently with my dad: my siblings and I were not next of kin and although we tried to influence his circumstances before he was institutionalised, events happened and decisions were taken without our input and we had no right to challenge them. But there are other awkward conversations I wish I’d had about Mom along the way, some of them with her partner. I wish I’d said more firmly that the lack of routine, the travelling around from here to there, was making her worse. I wish I’d pushed harder for her to receive regular counselling, for her to try out different anti-anxiety meds. And there are conversations I wish I’d had with the manager of one of the nursing homes she lived in, who bullied us into not speaking up for what we knew our mom would have wanted. I wish I’d used my voice more loudly against this silencing disease.

But the other, most important message I’d send to myself ten years ago, as I was giving birth to — and bringing up — two children, struggling with loss, shock, and grief, is this: You are trying your hardest, you are just about managing, and you will find more strength than you could ever have imagined. And even though it doesn’t feel like it at the time, doing what you can, with the knowledge you have, is enough.