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Nick’s fingers tremble a little as he buttons up his white shirt. He’s stood seemingly assessing himself in the mirror, only I can tell his eyes aren’t focused and he’s looking right through his reflection.
Frozen.
I hand him his black tie and he fumbles with it for a while, the tale too long, or the knot too fat. In the end I take it from him, and tie it round my own neck correctly, before circling it round his and tightening it at the collar. He tries to smile in appreciation but it barely reaches the corners of his mouth, never mind his eyes.
I know he feels sick, because I do to.
Down the hall, David is talking loudly on the phone. He’s shouting how he’s not to be disturbed again today and I feel the whole house shake as he slams his old bedroom door and thunders down stairs.
I squeeze Nick’s hand and he manages to squeeze it back, then he picks up the sheet of paper, her life reduced to a 10-minute summary printed on stolen office stationery. He reads it over silently once more.
In the car on the way to the crematorium the radio plays as soon as the engine starts, inappropriate pop songs fill the air but no one can bear the silence so the music fills the gap. David skips to the next station, eventually settling on the easy listening comfort of Radio 2.
Seeking meaning in the lyrics from the musical stylings of Yazoo was an unexpected turn of events but something in the chorus reaches down into my guts and I turn to see the impact of the words on Nick’s face. One of the tears he’d been storing in the corner of his eye falls, a trail down his cheek, the physical evidence of the grief held within.
All I needed was the love you gave
All I needed for another day
And all I ever knew
Only you
The car park has already started to fill by the time we get there, and we sit for a moment with the engine off, not yet ready to open the doors and get on with today. David’s wife reaches for his forearm and he loosens his grip on the steering wheel and turns to her and nods before opening the door.
They exit, but Nick remains still. The longer we stay in this car, the longer till all of this is real.
Only it’s been real for a very long time.
Nick was twenty when she was diagnosed. At first the worry had been a tumour or a stroke. What was causing this change in behaviour, these mistakes? This confusion that slippped into the normally competent, steady head of the household. Nick would come back from uni and notice, the odd thing, shopping left unpacked in the car, glasses ‘lost’ atop her head, a jumper on back to front.
On their own, it’s not enough to make you worry, everyone makes mistakes, has the odd slip up, forgets their train of thought or the reason they entered a room. She suspected it was the menopause. It was about the right time.
Only that wasn’t it.
Progression was relatively slow to start. Life could continue more or less as it always had. She needed to take early retirement when there were just too many mistakes at work, but she could still look after herself. She was still her.
Until she wasn’t.
That took years though, the slow stripping back of what makes a person who they are, along with their ability to perform simple tasks, hold coherent intelligible conversations, look after themselves.... talk. One by one the functions of the brain erode.
Alzheimer's is not simply being a bit forgetful, or repeating yourself. It is the gradual receding of the person you love before your eyes and being forced to grieve for someone while they’re still alive.
We’d moved in with her for the last couple of years. It wasn’t safe for her to live by herself and at first this seemed like the obvious solution. Care homes are expensive and becoming institutionalised would surely only hasten the diseases unstoppable march. For maybe 18 months or so it worked. We could cook her meals and do the shopping, I could work for home most days and a nurse would visit through the week to help with personal care.
The evenings were hard. The relentless pacing, being so unsettled, searching for something but unable to articulate what. She didn’t know what, at least that’s how it seemed. Only that she needed to keep circling, pounding up and down stairs, in and out of rooms, seeking out the pieces of herself her brain no longer retained.
She liked it when Nick would put on music, something they listened to in his childhood. She could sit and the old familiar smile would return, her beautiful eyes would sparkle like they had before. Like they used to when I would visit as a teenager and be embraced in that maternal hug that felt like a second home. The last 6 months proved too much for us to cope.
We’d agreed that respite care was necessary for both of our sanity. Nick had resisted for a while but he was exhausted, depleted.
“You can’t pour from an empty cup.” I’d say and Nick would nod and acknowledge but nothing would change. We kept on the relentless, wearing routine. The hours spent out of bed at night, trying to coax her back to her room, to stop her wandering. We, neither of us, getting enough sleep.
One time, we didn’t wake with her, too many days in a row of broken restless nights meant that the monitor installed in her room did nothing to rouse us from our slumber. It was only when we heard the back door slam, we realised she was out of bed. Nick shot down stairs, and found her barefoot in the snow, only a thin nighty to protect her from the cold. I followed after, stopping off in the kitchen to turn off the unlit gas hob.
We made arrangements for respite the next day.
It was only for a week, we spoke about going away somewhere, taking some time together as a couple, we were approaching our third wedding anniversary. Maybe we could just get the Eurostar to Paris for the weekend. In the end we were too exhausted. We slept, we sorted out some life admin we visited her daily.
She seemed sad. Confused as to why she’d been left alone in this place that didn’t smell right. Where the halls all looked the same and you needed a code to leave.
As we were finishing our visit on the second last day of our stay, a nurse took us to one side, explaining that her behaviour had become increasingly agitated and they weren’t in a position to keep her safe. She’d apparently pushed one of the older residents out of her way as she’d been doing laps of corridor and the dear old lady had been going too slowly for her liking.
“I could tell, she wouldn’t have been like that really, it’s the diseases – you understand – I know she was a lovely woman and wouldn’t normally do that sort of thing.”
Yeah, no shit Sherlock. Thanks for the insight.
Things got worse after that, what little speech she had, all but faded and she was no longer continent. The truth was, we couldn’t cope. She developed a urinary tract infection and was admitted to hospital.
She never left.
They had a unit there for those with late stage dementia and Alzheimer's, it felt like a waiting room at death’s door but truthfully, they were equipped in a way we weren’t. There were shifts, and medically trained staff and we thought it would be temporary. Whether she came back to us or we found her a home but, things advanced so rapidly at that point there was no solution found in time.
You’re constantly trying to fight the last battle without appreciating the front had moved. Researching care homes, when really it was just about making her comfortable now. In those final weeks.
When arranging the funeral and contacting various old friends and colleagues, one had seemed confused, “But what actually killed her?”
It was such a stark question.
People don’t seem to understand it’s fatal. That it’s a life sentence. They think but ‘You can’t die of forgetting.’
But when your body forgets how to swallow and your lungs forget how to function and you’re reduced wet cloths at your lips to keep them from drying out. Life cannot continue.
Nick was the one to call David, when it was clear that there were only a few days left. He had visited regularly but it’s hard when the person you're visiting no longer knows you're there to see them. When you end up having a more meaningful chat with the 90-year-old in the bed opposite. Yes, it would be confused, but she could be directed to old times and there would be some level of understanding.
It was hard not to feel it unfair, the injustice of it. Sarah was in her mid-sixties, aphasic, incontinent, unaware.
When Nick called, David had been packing for a short trip away with his wife, they’d helped too but they lived further away had a young child and it was their first holiday as a family.
He put it on speakerphone in the car
“Should I cancel?”
“I can’t answer that, David.”
“Well, what would you do?”
“I don’t think she’s got long, I’d want to be here. But she won’t know, you know that.”
“I can’t go on holiday with mum dying in the hospital Nick.”
“No, no I couldn’t either.”
“Shall I come and stay with you in the house?”
In the end, he’d got a short leave of absence from work and driven late into the evening. Whatever tension had existed between us, seemed to mean nothing as we stood in Sarah’s kitchen and drunk tea. I busied myself cleaning down every surface as the brothers chatted. Sharing old stories from their childhood, memories plucked from recesses of their brain that were brought firing to the surface with the events of the present.
We’d visit every day, the three of us. Sometimes, I went in, other times I’d wait outside. Sarah was mine too, part of my life since I was 14 but the brothers needed some time just them with their mother and so I’d drink tea from plastic cups and pick at hospital canteen food.
On the 4th day we were sat round her bedside, her breathing ragged and rasping. No one warns you just how slow and loud death is. How utterly drawn out the body will make the process of giving up our mortal shells. Nick was holding her hand, sometimes when he squeezed, she’d squeeze back but more often than not, there was nothing.
It didn’t feel like there’s long left but no one could stand being in that room any longer, the agony of watching each laboured breath wishing that it both will and will not be the last.
A decision was made. “Let’s go for a walk." Walk and remember and talk and clear heads of this awful room. Come back refreshed to resume our vigil. So that’s what we did.
We walked through the small patch of woodlands at the back of their childhood home, where we used to take Nellie and later Henry to play. Her boys spoke of the trees they climbed as children, and the fights they had, and the promises they made to each other not to tell their mum, on their return. The words flooded from them, the joy in their tales.
The phone was ringing, when we entered the house. The landline usually quiet, it can only mean one thing. Nick and David looked at each other but neither can bring themselves to reach for it, so I do it.
“Hello?”
“Hello I’m looking for Nick?”
“I... I’m Charlie – I'm her son in law, Nick’s here.”
“I’m sorry to tell you Charlie....”
I’m not sure I really heard the rest, I can see Nick drop to his knees in front of me as my face obviously relays the message and David wraps him up while I finish the call. They cling to each other and I feel it’s right I stay on the outside of that moment but then Nick looks up and reaches for me and I get to my knees and surround him, his wet face buried into my neck.
David boils the kettle because what the fuck else is there to do.
When we get the hospital, no one is there to greet us and we enter the room where she lays. The ragged pained breathing has stopped but she looks much the same as she had a couple of hours before.
A doctor enters, looking sheepish.
“I’d hoped to catch you before, you came in. I’m very sorry, but I still need to perform the final checks. It’s not... We know she’s passed it’s just procedure, you can step out if you like.”
No one moves. The doctor pointlessly checks her wrist and her neck for a pulse, dons her stethoscope and listens for 60 seconds to her silent chest. She nods and leaves.
That was it, she was gone and we weren’t there to witness it.
I worry if Nick will forgive himself for that fact, I tell him, maybe she knew, maybe she was waiting so we didn’t need to see it. I don’t think either of us believe that.
It was just the way it played out. We needed to leave that room, we needed to breathe, and talk about her in the fresh air, away from the smell of disinfectant and the unnatural heat of a hospital ward.
And it just so happened, that was the time she left.
Nick opens the car door and I follow suit and we head to the steps of the unassuming brick built building on the edge of town. Mourners dressed in black, look on with kind but uncomfortable smiles. We take our seats at the front and Nick takes out his sheet.
I’ve never been more proud of him, his voice somehow steady as he recounts her life to a room packed with people. He thanks the nurses, he welcomes friends and family, he tells her story. He says goodbye. I don’t know how he does it, this man who I swear, I’ve seen well up at Mastercard adverts somehow finds a strength to deliver a eulogy at the woman who made him and he does so, with depth of feeling and with care.
David delivers a reading, Forever Young by Bob Dylan, maybe some would find essentially a folk song at funeral a little crass, but a stale bible reading that none of us had any connection to didn’t seem appropriate either. So that was the choice.
The lineup is painful and I want to tell Nick he doesn’t have to do it but I know he wouldn’t back out. All these people have come to pay their respects, so now we need to let them. He shakes hands and nods and offers comfort to those overcome. It doesn’t seem right. He should be the one breaking down, but his grief had been long and low and slow. A decade of losing her. Her death only the final frontier of loss.
At the wake, the mood is lighter in the way that wakes so often are. An old school friend recounts the time her and Sarah bunked off in 6th form and drunk cider by a canal. David’s holding his 1-year-old now, Jessica’s parents having brought her to the hotel now that the formalities are over. She brings a levity to the situation in a way that only a young child can.
I’m struck again by loss.
Loss that this sweet child will grow up never knowing that she very nearly had the best grandparent anyone could ever ask for.
That one day, our own children as yet unplanned, won’t ever get to sleep over at Nana Sarah’s and bake scones and cheese straws or stay up late under a blanket and watch Disney films with her. They won’t know the warmth of her hugs, or the wickedness of her laugh. The cheeky glint in her eye when she’s up to no good or the strength she would offer in her warm embrace when you needed support in a time of need.
It’s in all the events yet to come, we will feel her absence on repeat. Nick robbed of a relationship with his mother as an adult. They’d just been getting there, that point where parent and child turn into a sort of friendship like no other. When the shared history that bonds you can morph into an unparalleled closeness, but without the embarrassment of teenage years or the necessity for continual parental guidance, a new structure can be formed. A new connection established. Only no sooner had that seed began to grow, it had started to wilt with her confusion. Her disease infantilizing, reversing roles that had not yet had the chance to fully shift to equal footing.
We should count ourselves lucky that she made our wedding, that enough of her was still left at that point to know what it meant and to share that with us. She might not have been able to help with the planning or offer a speech as we might have one day assumed but we have the memory of her bouncing on the dance floor to Brown Eyed Girl and Mr Brightside like the rest of us.
There is no substitute. No one else will ever have been the one who nursed him as a boy with a fever, no one else will ever have driven him to every rugby summer camp and washed his kit each week. No one else, made him endless meals, no one else grew him from her body, who literally turned her blood into milk and nourished him as an infant. No one can replace her.
So, when I hold him and cradle him in our bed that night, and I feel his gentle sobs against my chest, I don’t try and tell him it will be OK. That time will heal all wounds, that life will go on and it will get easier with it’s passing.
Right now, his grief is a gaping black hole at the centre of his life, one that has been growing with every year and now feels all consuming. That hole will remain. Life will come marching on regardless and filling, in and around it. We will live a full life together, we will surround ourselves with love, we’ll laugh, and cry, and make love and hold each other in the depth of pain and the pinnacle of joy. We’ll cuddle our way through gentle laughs and Thursday nights in. But the grief will remain. It won’t always be at the forefront, it might not even form part of our conscious thought but it cannot be removed. Removing it would be removing her and forgetting as we have come to know is too big a price to pay for a life set free from pain.