SUITCASE PACKED AND READY TO GO

I like the Dalai Lama’s concept of death: the thought that it’s like changing your clothes when they are old and worn out, rather than as some final end.

Apparently, the grief felt after someone you love dies is not measured by the number of tears shed. No, it’s measured by scales. Not the type used for baking a cake, although of course food is synonymous with grieving.

When Dad died, my friends brought round a range of sympathy sustenance: lasagne, muffins, chocolate. And there was the amount of food consumed at the wake. He had been a popular man, so we ordered enough for a platoon of mourners. It all went. Dad would have loved it.

One of his favourite past-times, apart from golf, was eating a meal with friends or family. Sunday roast around our massive kitchen table was the highlight of his week. As our family grew bigger with the addition of girlfriends, boyfriends, friends, so did the table. It was Victorian with a crank handle that opened up the middle section so that extra leaves could be added. It was ironic that the cancer he had took away his appetite completely. One of the saddest moments was watching him trying to enjoy the food in front of him but giving up and pushing the plate away.

No, grief scales have nothing to do with weighing food. The Grief Intensity Scale weighs up feelings, thoughts, and behaviours after someone close to you has died. It’s pretty straightforward. You answer a set of simple questions (How often have you felt yourself longing or yearning for the person you lost? Not at all, at least once, once a week, once a day, several times a day?) and just like that, in not much more time than it takes for you to step onto a scale to measure your weight, you can quantify the amount of grief you are feeling that day.

And then there’s the Anticipatory Grief Scale (AGS), which evaluates the anguish you feel in anticipation of someone dying. Consisting of 27 statements it measures anticipatory grief on a Likert scale, which allows you to express how much you agree or disagree with a particular statement. The higher the score, the higher your levels of anticipatory grief. Simple.

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1) I feel close to my relative who has incurable illness.

Strongly Disagree/Disagree/Agree/Strongly agree

We’d ordered a hospital bed to put in the sitting room because Dad had become so weak he found it difficult to walk from his bedroom. The flat had an open plan living space so we could make meals in the kitchenette and chat to him at the same time. His pride and joy, a 43-inch flat screen TV, hung on the wall. My brother bought it for Dad after he was diagnosed with pancreatic cancer so that he could watch his beloved sport in glorious, ultra HD.

My sister, the efficient one, created a timetable each week and labelled our daily duties in different colours. It was stuck on the fridge door with magnetic “dots,” so it was clear for us all to see who was due in that day. None of us fancied looking after his “bottom end,” so we employed a domiciliary care nurse, Stephen, to keep it all shipshape down below. Dad liked him.

“It’s very matter of fact. There’s no social chit chat, it’s all flashing flannels and a quick towel dry,” he said over lunch one afternoon.

“Lovely,” I said as I tucked into vegetable soup and slices of granary bread. We were both sitting on the sofa, watching Pointless on the TV. Dad’s food lay untouched on the side table.

Jenny, an occupational therapist, had been to the flat the day before to oversee delivery of the bed and other essential “living and disability” aids: commode, Zimmer frame, shower chair, elephant feet to raise the height of the sofa.

 “It’s like sitting on that wall overseeing the harbour in Dartmouth,” I said as I peered over my soup bowl. My feet were a fraction off the floor. “Remember? We’d all sit in a row and dangle our legs over the wall, eating fish and chips.”

“You used to love fishing for crabs,” said Dad. “You’d sit on the pier all day with that little fishing line, filling up your princess bucket.”

He turned away to look at the TV. I placed my hand on his arm.

“Perhaps we could go there next year. We could hire a mobile home and drive down. Take our time.”

Dad covered my hand with his own. “I’m so lucky to have you.”

*

2) I very much miss my relative the way he or she used to be.

Strongly Disagree/Disagree/Agree/Strongly agree

This Woman’s Work was interrupted by the sound of my mobile ringing in the car. Kate Bush was put on hold as my sister’s name lit up on the dashboard.

“Hi, Em, all OK?”

“I’m at Dad’s. I need your help.”

My heart dropped. I was on my way to lunch with a friend. It was supposed to be my day off from Dad day care.

The front door was ajar. “Hello,” I called out as I walked into the sitting room. Dad was lying on the floor in between the bed and the sofa. From what I could see he was naked. A blanket covered him up to his chest. Emma had placed a pillow under his head. The room stank of faeces. Dad looked up at me, his face almost as grey as the carpet he lay on.

“Shit, Dad. What’s going on?”

“Shit is pretty much right,” said my sister as she walked in from the bathroom, carrying damp towels and a bowl of hot water. Dad smiled weakly.

“I’ve had an accident,” he said.

“He’s been lying on the floor for more than eight hours. Covered in shit.”

“I’ve had better moments,” said Dad. “I’m sorry.”

I smiled. “We’ve all had better moments. It’s not your fault.” I turned to Emma who had flicked up Dad’s towel. He moaned as she gently moved him onto his side and finished off cleaning around his bottom and the tops of his legs.

“What can I do?”

“Clean the walls.”

The wall at the back of his bed had brown marks smeared all over it. He’d lost control of his bowels and used the wall to prop himself up as he tried to walk to the bathroom. The sheets hung off the bed, covered in woody slime.

“Oh, Dad, why didn’t you use your alarm?”

I wanted to cry. I couldn’t bear to think of him lying alone all night on the floor, in that state.

“I didn’t want to bother anyone,” he said.

*

Dad’s cancer moved to his brain, giving him dementia-like symptoms. We’d been through this before with my mother, who contracted vascular dementia and passed away in 2013. Unlike Mum, who didn’t recognise any of us towards the end (apart from Dad, who visited her in the care home, every day at the same time for five years), Dad’s forgetfulness seemed to relate mostly to the remote control and kitchen appliances.

Before he became too weak to get out of bed, he’d use his Zimmer to potter about the living area and make himself a cup of tea, or a piece of toast. He kept forgetting to fill up the kettle. We got through five in two months.

We gaffa-taped the remote so only the on/off and programme up and down buttons could be used. Before that, I think the most times I’d been called to explain how to turn on the TV or asked to drive over to his flat and work out why the screen looked like snow was 15 in the space of 24 hours. I used to dread those phone calls.

*

3. I have periods of tearfulness as I think about my relative’s illness.

Strongly Disagree/Disagree/Agree/Strongly agree

Stephen had turned up as Emma and I were cleaning the flat. We’d been unable to lift Dad back into bed. He was so frail we were worried about hurting him. Stephen shooed us into Dad’s study and expertly collected underwear, pyjamas, Dad’s teeth, a damp flannel, and a hairbrush from his bedroom. We’d already put clean sheets on the bed and within 15 minutes he ushered us back in.

Emma put the kettle on. Having spent his allotted time, Stephen was putting on his coat.

“Thank you so much.”

He put his hand on my arm. “It’s a pleasure. Your father’s a lovely man. Will you call someone?”

“Yes,” I said, looking over his shoulder at Dad who now lay sleeping peacefully in bed.

“Just, let me know if you don’t need me tomorrow,” he said as he left for his next appointment.

“We should call an ambulance,” said Emma bringing over two cups of tea. “We need to get this problem under control.”

We both sat on the sofa, legs dangling, looking over at Dad. He still looked pale. His translucent skin taut over now pronounced cheekbones. At 6’4”, he’d always been a real presence. Whenever he walked into a room he seemed to take over the space. But now, lying in the bed, he looked almost childlike.

I walked over and held his hand. “I’ll call.”

“He’ll be back here before we know it,” said Emma.

“Yes.” I turned around to face my sister. Her face was tight, almost contorted. I moved towards her.

“Don’t,” she said. “I won’t be able to stop.”

*

4. No one will ever take the place of my relative in my life.

Strongly Disagree/Disagree/Agree/Strongly agree

Dad’s suitcase lay unpacked on the high-backed chair in the Sue Ryder hospital room. The sun shone through the window, lighting up the bottom of the thin blue-green bedspread. A tiny flat screen TV was fixed to the wall next to his bed.

Headphones dangled out of the bottom of the screen and lay on the over-bed table next to the small remote. I looked at the remote with a feeling of dread.

Dad seemed to improve in the ambulance. He’d put on his funny-man mask, so the ambulance men couldn’t see he was afraid. This alter ego has served him well over the years. As a child he’d had numerous problems with his “waterworks,” which often left him smelling of urine. It was something to do with certain tubes not being connected properly. In the 1930s, there was nothing to stop his teacher from making him sit in the corner of the classroom and allowing the other children to ridicule him.

When he was 12, Dad had an operation to rectify the problem. But rather than becoming introverted and withdrawn, the bullying he’d received as a child made him determined to make everyone like him, and being able to make people laugh came naturally.

“Do you think they’ll let me bring my telly in?” he asked as the nurse busied around the man in the bay opposite.

“I’m not sure, Dad. Where would they put it? Anyway, as soon as they’ve sorted out your little problem, you’ll be going home.”

Dad smiled. He felt safe at Sue Ryder. He’d been visiting their day centre once a week for the past few months. To me, the day centre seemed like purgatory – a room full of old people all talking about their health problems, but Dad had a new audience to tell his stories to and many of the inpatients were women, whose husbands had already died. Heaven.

After the nurse left the room, the man in the bed opposite introduced himself. Like Dad he’d been an engineer, like Dad he had pancreatic cancer and was dying.

“Fantastic,” said Dad. “We have so much in common. Darling, would you mind unpacking my suitcase?”

*

5. No one will ever take the place of my Dad in my life.

Strongly Disagree/Disagree/Agree/Strongly agree

About Claire Harrison

Claire Harrison is a freelance copywriter and author and currently writes for Oxford University Press. Claire has written three children’s books and her prose and poetry have appeared in print anthologies and short story collections. She is joint managing editor of The Phare Literary Magazine. Claire has a Masters’ degree in Creative & Critical Writing and is currently studying a PhD in Creative Writing at the University of Gloucestershire. You can find her here: https://claireharrison.blog/ and on Twitter/Instagram @ClaireHWriter

Claire Harrison is a freelance copywriter and author and currently writes for Oxford University Press. Claire has written three children’s books and her prose and poetry have appeared in print anthologies and short story collections. She is joint managing editor of The Phare Literary Magazine. Claire has a Masters’ degree in Creative & Critical Writing and is currently studying a PhD in Creative Writing at the University of Gloucestershire. You can find her here: https://claireharrison.blog/ and on Twitter/Instagram @ClaireHWriter

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