Having Dementia in the house carries with it an onslaught of inside jokes. Over five years worth of perceivably funny catch phrases and bizarre incidents have made my Grandma’s ongoing deterioration ‘manageable’. They’re taken from a directory of memories of how difficult and confused my Grandma has come to be. It’s the journey the initial grief has taken over the years. It’s also the first thing that comes to mind when I think of what it’s been like to live with her. Our house of seven is characterised by sighs of frustration that turn into belly laughs.
In this space we share with Dementia, my Mum is law and order. My Dad, three siblings and I are all spectators to her work as my Grandma’s carer and daughter. We’re unfamiliar with what it takes to deliver on an undiluted duty of care. My mum hasn’t the luxury. Black and brown family units don’t do care homes. Any act that could be perceived as a ‘parade’ of our difficult circumstances is a no go. Unreasonable amounts of responsibility must be absorbed by the family. Privacy of epic proportions is mandatory.
My Grandma always said, long before knowledge of any life altering illness that if she ever ended up in a care home, she would’ve kicked out and screamed the entire way. She was prideful. She was refined and classically feminine. Sunday’s bests were worn outside of church hours; heavy overcoats that symbolised her inner wealth, endless pairs of glossy ankle boots, musky perfumes and lotions, and the wigs, most in a style highly esteemed by older black women worldwide- ‘The Pixie’. There had to be a uniform for keeping up appearances within the extensive network of South London’s first-generation Caribbeans. Her brand and her people were the essence of the life she’d built for herself as a retired, Bajan, Windrush nurse living in New Cross.
My Grandma’s old way of being, and the belongings and relationships that solidified it have collected dust. 75% of her life folded up and shut away by a memory loss of ultimate severity. My Grandma’s life now orbits around her daughter’s, and co.
For a moment over summer, my sister and I moved up in the world to look after my Grandma while my parents went for a post-lockdown break. I was greeted with an influx of vivid memories of who she once was to me. An influx because I’d let go of them suddenly during the earlier days when the Alzheimers diagnosis was harder to accept. To drop them was to accept, to accept triggered a premature grieving process, but it made things easier to live with. By the end of the two weeks, I had an image of the old her to take away as a souvenir.
When she still could, my Grandma fit the mould of most Grannies, Grans, Nanas. Kind, attentive, generous in that sickly sweet way that’s expected of Grandparents. And she was always there. We’d often get home from school to be greeted by the smell of ironed cotton and fabric softener. She’d emerge from our frontroom in one of her shapeless home dresses, those chained glasses, and a smile on a far plumper face than today’s. She’d journey an hour to bless my Mum with a choreless house, and us with her homely presence, and sweets. Her benevolence was so potent, so ingrained that it refuses to leave her even now. My sister and I couldn’t get through one act of care without her offering to assist with tasks her mind can no longer fathom. She can’t stand to be a burden of any sort, that’s how its always been. As everything else continues to fall away, the selflessness may be all that remains.
The old her appears in fragments. Her talkativeness- she’d be on the phone for hours when she was well enough to navigate her way through a phone conversation. The chatter these days is often nonsensical. Talkativeness meets Dementia to create a lot of space for repetition, as talking for the sake of talking does. Meeting her announcements and questions with a composure that suggests they aren’t getting stale is one of the codes of conduct for living here. You learn to be who you need to be, and say what you need to say to get through a conversation with her.
In a Bajan accent that has stood the test of time, she tells my sister and I, still, that she’s going to steal our legs in the dead of night, and when we wake up, we’ll have her old short ones, and what will we do then? She still has the capacity for jokes, the ones she used to tell, and newer ones that don’t have the same coherence. She must still remember to tell the legs one because she’s always truly meant it. She loved laughter like most. When she shakes with it these days, the reasoning is often lost on us, but her moments of joy aren’t.
A lot of who my Grandma was before the Dementia was embedded in the mass of people she knew. There were simply too many people for her to call to bother developing a stomach for solitude. She preferred to find herself in others. In the UK, in the US, back in Barbados, my Grandma had friends coming out the backside. Friends from church, friends from her nursing days, friends made as a young woman back at home before everyone departed ways, some joining her in the West, others staying in Barbados. She was a loved woman, a good friend I suspect, dependable like she was to family. I think of that part of her life now, looking for the results of such a prolonged service to others and I can’t see any. Most of the relationships in my Grandma’s life pre-diagnosis are obsolete. There’s not much else outside of this house.
My Grandma’s best friend is one of few who still call- Claudette, or Aunty Claud, who doubles as my Godmother. Having been diagnosed with Alzheimers shortly after my Grandma, their conversations at least make sense to each other. One wasn’t left behind, one wasn’t abandoned by the other. Anyone else checks in through way of my Mum; old cousins and other relatives who’ve learned of my Grandma’s decline and feel obliged, my Grandad, who remarried decades ago. My Grandma’s older sister is the only one who makes in-person calls. She’s frail, but lucid. She travels an absurd length for someone in their mid 80s to see her. But of course, Coronavirus has rendered that voyage obsolete, meaning they haven’t seen each other in nearly a year.
My Grandma like many others, was a second Mum, a mum with an ability to compromise. She knew how to demonstrate love in the ways that make children feel shielded from all darkness. She was full of ridiculous cautionary fables. Like older Caribbean’s tend to, she’d sometimes talk to us as if we were older than we were. I’m not entirely sure she knew that children prefer that, but she did it anyways. Her home was perfect, leaving it after a long weekend with Nana always inspired weeping. Outings with her were preceded by sleepless nights of delirium. I miss hugging a fuller body, and telling her things.
I was grateful for what I knew would be an inevitably strenuous undertaking, caring for her. I established a reconnection, for better or worse.
What’s hard? Everything. But one of the hardest things about watching my Grandma succumb to Dementia is the need to picture the inside of her mind. She must be frightened. Is she always? How traumatised is she? What does she think about? To live in a constant state of erasure is like what? I need to place myself in those shoes, particularly in those moments where I catch her sitting quietly, staring into space.
And then there’s my Mum. I refuse to submerge myself in thoughts of what it must feel like to lose a parent to Alzheimers, not even for a second.