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This is the price of love

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My mum is gradually forgetting how to use a knife and fork.

At almost 87, and with the dementia that has taken twelve years to meddle this far, meals are bamboozling. She knows that jam is to eat, but forgets to spread it on toast, eating it straight from the sachet with a knife. She loses energy and appetite trying to navigate a plate of food. It’s easier to sleep. Which she does, nearly all the time.

Dad is a man with razor-sharp wit who, three years off ninety, still drives to their Alzheimer’s choir gigs. He’s hot property on the geriatric speaking circuit, laying audiences in the aisles (granted, some are asleep) with his talks on astronomy, geology, history or politics. A retired geologist recently complimented him on his research — which is refreshing, in this age of misinformation.

He’s extraordinarily active and involved in life … or he would be, were he not such a devoted husband. Dad lives with mum now, in a nursing home designed for her stage of ageing, not his. The dining room is peppered, regardless of when we visit, with once-vibrant women (and a handful of men), who are now shells of their former selves, sitting at empty tables, staring for hours at nothing.

And there is dad, sitting amongst them. Brilliant. Interested. Voluntarily holed up before his time, in a place where the emergency doors are closed discreetly during meal times if a resident is being conveyed down the hall on a gurney for one reason or the other. At 22, in 1954, he promised ‘in sickness and in health’ and he delivers on that promise 24/7, six and a half decades in…

The smoke and mirrors dad has deployed over the last decade to protect mum from the truth — that she has Alzheimer’s — offers a masterclass in love. Where my sister’s or my patience might run short the tenth time we explain something in the space of a few minutes, Dad’s patience has held out for years. It’s not just the repetitious questions. It’s the early hours anxiety and the night terrors. It’s the constant worry over her handbag and what’s in it (a pair of slippers, a framed photo or herself and countless bundles of toilet paper rolled into small, cylindrical shapes).

Her mind clings to who we are, and we feel very loved by her as always, but under stress, she slips into forgetting us and mixes up our kids. The one new fact that has persisted through the fog and managed to plant itself in her long-term memory is that her son-in-law has died. She can’t recall where they live or how old they are or what they did thirty seconds ago, but after many a painful, ‘Where is Jeff?’ at the start, she now remembers, and talks of him often, and of how much she loved him and how sad it all is.

I read an article from a young widow in the US whose retired father has moved in with her to help with the parenting. I have exactly that kind of self-sacrificial father, and that kind of mother too. She still offers to come over if ever I need help with anything, not knowing that she has no idea where I live, can’t navigate, or drive, or help, and that her presence, while beautiful, actually complicates things even further. So our circumstances are such that it’s been the other way around in our family. It’s my sister and I and our kids trying to help care for our parents, to take them to appointments and clear out their home and sell it, and assist with government paperwork so unnecessarily complex and baffling, it’s a disgrace.

Each time we help them, I have flashbacks to all the cheese and lettuce sandwiches from the 80s. And to the piano lessons and the band rehearsals and the proof-read uni essays and the loans to pay bills when we were short. It’s like we’re chipping away hopelessly at a lifelong love debt we can never repay because there was just so much of it.

This article was going to be an entirely different one, in defence of consciously staying single after midlife singledom is forced upon you. I had a whole lot of thoughts on that, and now I find myself confused…

I don’t want to be one of those old women sitting at empty tables, staring at nothing. Genetics will give that a red hot go, I suspect.

I want to be like mum who, terrified and helpless against the inevitable loss of her mind and then her body, still has dad. She might be confused about cutlery and carrying a ludicrous assortment of personal items, along with paranoia about thieves, while wearing at least three necklaces at all times … but mum is not in any way confused about dad. She frequently declares him to be ‘the most beautiful man in the world’, and she is right.

He reads to her the love letters they wrote to each other as teenagers, even the parts where eighteen-year-old him confessed to eighteen-year-old her that he couldn’t imagine why someone as wonderful as her would consider being with him. How ironic, from a man who could be the ‘poster husband’ for the ages…

It’s torturous watching a parent unravel, but this sadness is the price we pay for our extraordinary luck. Not everyone has two parents reach old age. Not every set of parents hurdle four score years and seven even deeper in love than they were during their teenage correspondence. Caring is exhausting, but it’s also a privilege denied to many.

My child was five when his dad died. My gratitude for being 45 and having two parents is tainted with guilt. I value the very thing that was torn from my little boy, and he needed it much more than I do. The mind starts bargaining, pointlessly, swapping imaginary circumstances in which every scenario still seems abhorrent, trying to make sense of it all. Maybe my parents toyed with similar mind-games, grief-stricken for their grief-stricken child. Wouldn’t we all take our child’s pain if we could?

But that’s not how it works, of course. It is what it is. Grief is not a competition. I am allowed to feel the wrench of losing this beautiful woman, not suddenly or peacefully, but at a snail’s pace, excruciatingly, in front of our very eyes, for years.

I usually know how to end an article but I’m struggling here. So I’ll just email this to dad and he can approve it on his iPad in the dementia ward.

He’s devouring Ginger Gorman’s book about internet trolls now, and no doubt wondering how the world could have gone so inexplicably mad on his generation’s watch, so keep the comments nice. He really deserves it.

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