December 23rd, sometime after 5am. The care home is closed, so I have to key in the security code. Downstairs, the living area is dark, except for the flickering fairy lights on a nativity scene in the corner. Mary is kneeling beside the baby Jesus in his manger. Upstairs, my father is dying.
It’s been almost a year since we made the most difficult decision of our lives: that we could no longer look after my father at home, and that he needed professional, round-the-clock care. In that time, I’ve grown used to our new normal. Dad’s name on his bedroom door beside a memory box filled with photos and a miniature tractor. Bringing him the newspaper. Sometimes coffee and cake. Showing him photos on my phone, trying to make him laugh.
But this time, we’re here to say goodbye. In his room, dad’s eyes are closed and his breathing is ragged. I tell him that I’m there, and not to be frightened. I don’t know if he can hear me.
At some point, a priest arrives. He begins to read my father’s last rites while my sister, my mum and I hold his hands. My husband stands behind us with his hand on my shoulder. Eventually, the priest says, “I think he’s gone.” He tells us that, in the hundreds of deaths he has overseen, this is only the third time that a person has died so serendipitously mid-sacrament. I bury my head in the blanket next to my father’s arm, still holding his hand. I wonder how long it will be before it turns cold.
I stagger out of my father’s bedroom into the hallway. I don’t know what time it is, but it must be after 7am because the sun is beginning to rise, painting the care home in the milky light of dawn. I try to catch my breath but I can’t. An elderly woman, one of the residents, is sitting on a chair in her nightie. She says something to me but I can’t remember what. It must have been kind, though, because I try to say “thank you”. She smiles at me.
My husband leads me downstairs to get some fresh air. Outside, my legs give way. Everything feels heavy; the air around me like lead. He picks me up like a child and gently carries me to a bench, cradling me as I wail into his chest for what feels like hours. He tells me it was only about 10 minutes.
When we return to my father’s bedside, my mother is stroking his hair – a beautiful head of thick, white hair that never showed any signs of thinning, even as the dementia thinned almost every other part of him. Soon, the coroner arrives. The care assistants and nurses line the corridor with their heads bowed, as my father leaves the care home for the final time.
It has been 58 days since my father died, 22 days since hundreds of people filled the chapel to pay their respects at his funeral, and a number of years since we noticed the first terrifying signs of dementia. During the seemingly endless months of navigating anticipatory grief and then bereavement, this is everything I’ve learnt. I hope it might help anyone else who finds themselves there too.
Healing is not a linear process and grief is highly idiosyncratic in nature. Some people can’t talk about it; others can’t stop talking about it. Others, ahem, write about it for a bunch of strangers on the internet to read. You might not like or understand the way a loved one grieves, but everyone’s journey is unique and deserves respect. As counterintuitive as it seems, collective mourning can easily fracture relationships. It brings all kinds of unprocessed emotions and regrets to the fore. Learning to be patient with the people around you and knowing when to let things go will save you even more heartache in the long run.
48 hours after dad died, we had the family round for Christmas Day. We made lunch, pulled crackers, and opened presents. A few days later, I was laughing until my sides ached playing board games with my best friend. In those fleeting moments of joy, grief will find a way to rise up into your chest like bile. It will tell you that you’re a really shitty person for laughing because, in case you forgot, your dad just died. In fact, grief and guilt often go hand in hand – an incapacitating symbiosis made even more fraught if you experience quiet feelings of relief when a terminally ill loved one dies.
The long-term work of rewiring these neural pathways happens in therapy, but day to day, I try to remind myself that holding opposing feelings is normal. I can be happy because I’m playing a silly game with my friend; I can be sad because my dad is dead. To feel these contradictions is human, and the pain of loss is excruciating enough without piling self-loathing on top.
The way such overwhelming emotion takes its toll on our bodies is often underestimated. When dad got ill, I developed eczema for the first time since I was a toddler. After he died, the eczema on my eyes – which I endearingly named my ‘sad girl eye eczema’ – was so bad I sometimes couldn’t peel them open. My stomach hurt constantly. I couldn’t eat or sleep. My immune system stuttered to a halt like a faulty car engine. My hair fell out in clumps and the circles under my eyes became so dark it looked like the rest of my face might fall into them. As cliché as it sounds, self-compassion is key. As is taking adequate bereavement leave and seeking medical advice when needed (my pharmacist is now my best friend).
The ‘thinking of you’ messages and the sympathy cards will eventually stop. People will treat you normally again: you’ll be criticised at work; your partner will snap at you; your friends will say something insensitive. The world will keep turning in spite of your loss, and it will make you want to scream. I suppose this is part of the ‘anger’ stage of grief. Physical release can help, from exercise to actually screaming when you feel like it (using a pillow is advisable). Grounding techniques, such as breathing exercises, can also help when it feels like the world is moving on without you. Most importantly, communicate how you’re feeling to your support network. No one expects you to just ‘get over’ something like death.
Unlike conventional grief, pre-grief or anticipatory grief happens before a loss, usually when a loved one is terminally ill. With dementia, often called ‘the long goodbye’, you grieve the person you knew before the illness stole them from you. While this allows a more gradual form of acceptance and closure than when someone dies suddenly, I foolishly thought that it meant, when the time came, I’d be prepared for my dad’s death. Of course it didn’t, and I wasn’t.
In fact, nothing prepares you for death. All you can do is try to come to terms with it, and slowly start to pick up the pieces of your life. I’m by no means there yet. But each day, I try to reconcile with a world without my dad in it, and hold on to the happy memories. I think of the way he made everyone a cup of coffee as soon as they walked through the door, how he would spark up conversations with strangers everywhere we went – and of his wonderful, booming laugh (usually at one of his own bad jokes) that would fill up the room entirely.
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If you’re struggling with the loss of a loved one, speak to your GP about bereavement support options and find out more about mental health services at nhs.uk. To speak to someone now, call the Samaritans on 116 123.
