Several people have asked why the Facebook absence, why Stella and I are not available, why we have had to cancel various events or are just not making any plans. This is why.
The past few days I’ve found myself saying to numerous people on the phone and in person, my dad’s dying. He’s been dying for some weeks now and I find myself in a weird place, surreal, away from my usual life, unable to write or do anything that doesn’t involve a district nurse, palliative care, carers, a catheter and morphine. And I hate it. I didn’t bargain on my dad dying from secondary cancer in the cruellest way, lying in a hospital bed in the dining room of my parents’ house. The room where they started their business, first an office and twenty five years later their dining room. It seems fitting that he should end his days in a room that has provided much happiness and food and celebration. I thought he’d have a quick death, die of a heart attack, one minute here, the next gone, that’s what we all want for our loved ones. But we mostly don’t get what we want. Mostly we get the unexpected phone call in the night.
Right now I’m sitting in front of my Abba, dad, abbale, Jackson. It’s the only way I can write this, because every time I leave the room he calls for me. I’ve left my south London home, left my darling wife, who is still in recovery from a cancer recurrence and a recent biopsy on her arm, my cat who provides me with joy, and our house, which is going through its own loft conversion turmoil, but that will have a fantastic outcome. I’ve left all of that to be here. My dad is currently talking, sense and no sense and intermittent shouting about wanting to die and can we end it all for him and a repetition of words which are never formed into finished sentences, like a David Mamet play. I quite like the nonsense, how he taps the table with his scratch backer, asks to be sat up, to be moved up and then down and then up and then down and then moved to the side and hold me tight, hold me tight. It’s hard physical work, hard when I know he has bone cancer and I am terrified of breaking something or hurting him. And watching my mum hold him tight makes me cry. Up down up higher higher hold me tight enough enough I can’t take it.
My compassion is filled with anger and resentment. I want my life back, I want to be able to look after Stella, I want to be in my own home. I want my dad to die so that he, and we can have some peace. I never thought I’d say those words, I want my dad to die, but I do. Watching him suffer like this is unbearable. My unbearable threshold is pretty high, but this has pushed me to the limit. Our ‘conversations’ go something like this.
Dad. Shelley, end it, take me away, lift me up to heaven.
Me. I can’t dad, I can’t kill you.
Dad. Why not?
Me. Because I’ll end up in Holloway prison.
Dad. So what?
Yes, I am going to write the play, because it has to be written, because among the suffering there is great humour and tenderness and silence and all that I cared about I don’t care about and so many people have been through this and worse.
My mum is astounding. Bashing at chicken pieces to make schnitzel for dinner. Last night we ate dad’s mattar paneer frozen and to be defrosted in time of need. Thanks dad. Thanks for all the food and love and wisdom and laughs. Your version of Madame Butterfly will always be the best.
Dad was a self sufficient, energetic 86 year-old. Yes, he’s old. His dying is very different to my sister’s. He’s had loads of operations, the last a heart valve replacement some years ago. His pig’s valve is doing very well in his kosher heart, but his liver is not so great. He used to do everything for himself, looked after my mum, looked after all of us, never sat down except to eat, and even that he did with the enthusiasm of ravenous youth. He used to drive and buy fruit and veg for everyone, actually he never bought it. He has a deal with the grocers around the corner. They park in his driveway, thereby not needing a business permit, and in return he gets fruit and veg for free. It’s an unspoken agreement. Manuel from the grocers’ shop arrives with green bags full of produce. My mum says, will they still let me have fruit when your father is no longer here?
He has carers coming in four times a day, two carers each time, not one of them is English. Take that UKIP. They are hard workers and love my mum and dad. And when they are here at 8.30 I run up to the shower, make myself fresh, then mum and I have breakfast. And when they return at 1, we have lunch, and at 5 we have a break and at 8 we have dinner. And so it goes on. We fit our meal times around them, because it means someone is always with dad. My mum hugs and kisses them and thanks them. It is exhausting and frustrating. He wants to die, he calls to his mother in Hebrew to take him. And there is nothing we can do. My sister’s death was bad enough, but this is horrendous. He’s in a kind of living purgatory, not getting out of bed, dozing and waking and shouting and dozing again and calling my name, calling my mum, Esther or my nephew Eyal or my niece Gal or my cousin Cheryl. We four take it in turns to be with mum and dad. One person cannot be here for more than 3-4 days because it is too hard, upsetting, draining. Friends and family members drop in, but dad doesn’t want to see everyone. His undignified death is not how he would want it to be. He would want to go out with a bang, a great big colourful bang, instead he is like a sparkler that never runs out of spark, that sizzles and lights up but is never fully lit. I wish I could dampen that sparkler, but I cannot. So I continue to do what needs to be done.
Making calls to my father’s rubbish GP surgery takes all the energy I have. Then there are the incorrect prescriptions, the bank that give me problems trying to gain power of attorney because now I am in charge of the house, of my parents’ house. Stella had to come over with my passport and my sister’s death certificate so I could go to the bank and sort this out. She, with her own post surgery stress, her work and our house to look after. I miss her. I miss my life. I miss my friends.
There are people who are kind, the carers who come four times a day, who my mother thanks and hugs. The night carer who sits with my dad from 10pm – 7am, so that we can sleep. He has had three night carers, gentle women who have had their own suffering. I am curious, I ask them questions about why they do this job and they tell me. One, at 18 lost both her parents in Somalia. Rita, who is dad’s current Ugandan nighttime carer, lost her mother to spinal cancer. She tells stories of her mother having 8 children, of being in the fields all day, of pain early on and then cancer and death. And all of this while I am in the house I grew up in, Golders Green, north London. Golders Green is full of orthodox Jews, buzzing during the week and silent from sunset on Friday night to sunset on Saturday. I like it best then. I crave the quiet. I love that I can drop round the corner and buy falafel; at home round our corner is rice and peas. I love rice and peas. I love the cake shop and have to stop myself indulging in sweet sickly pastries.
Dad is quiet now. I gave him a diazepam. He was fractious and distressed. Now he sleeps peacefully, mostly. Intermittent calls to ‘hold me Shelley’ and ‘water,’ allow me to write. And I am loving writing. I miss making it up as I go along. Mostly it’s made up for me, with dad calling and doorbells and the phone ringing. And sometimes the doorbell brings loveliness, their kind religious neighbour, Rifka, a mother of five, who wears a wig and sober clothes, and me in jeans and t-shirt and hoodie, my purple converse blending with the plants along the wall. Rifka offers help, gives us meatballs, chicken and noodles. Strangely I have been craving meatballs and chicken with noodles all day. You have five children, I say. So what, she says. If you need to go out I can sit with your parents. And I know she means it.
Dipti from the post office came to say goodbye, and Manuel from the grocer’s shop cried when he said goodbye to dad. And the women from the bread shop ask about him, and the women in the chemist sighed when I said my dad is dying. Dad has a lot of women in his life. Despite his sickness, his charm still filters through.
So this is where I am. Where I have been, where I will continue to be until he goes to his daughter and parents and little brother. I have told him that he will leave one lot of love to go to another lot of love. He asks me how I know. I know, I say, I know.
Tonight I will drive home and stay home and return next week, dropping in to see them on Sunday, because the break will be too long. And while I am driving, I will remind myself, as I do every day, of how lucky I am, how lucky we are, to have the support and money and NHS to help us. To have the privilege of being with my dad when he is dying, to hear him speak to the carers in Arabic and Italian, his pronunciation perfect. He voices his suffering in Italian very well. When I asked him this morning what an egg was in Hebrew, because I couldn’t remember, he told me.
This morning he asked me to scratch his foot, to rub his foot. Rab it. Rab it. Not a rabbit but a rub it, he said. Rub it. Clever dad. Dying dad. My dad.