Good Death. Bad Death: What my mum and dad’s deaths revealed about inequalities

Good Death. Bad Death: What my mum and dad’s deaths revealed about inequalities

Real Flowers

Five years ago, dad came out of hospital to die. Suffering from cancer, he went to stay at a hospice. The carpets were plush, the fixtures clean and tasteful paintings hung on the wall. Real flowers.

Visitors to his final bright room always commented on the beautiful bay window, replete with stained glass engravings of blue flowers. Commented so much in fact, that my father, recovering his sense of humour for a short while, said: “sod the bloody windows, you’ve come to see me”.

There was a cafeteria (not canteen) that opened up to a walled garden with paths leading to secluded spots by tall flowering plants where families could sit quietly and cry. We did a lot of that, surrounded by sparrows.

The staff seemed unhurried. There were no ‘cabbage’ smells, and little of the frantic rush that there had been on the 11th floor hospital cancer ward. Nurses and healthcare assistants asked more frequently about our needs and wishes, brought us tea and chocolate biscuits.

And, when we retired to the lounge (with small kitchenette for those ‘patients’ who were still able to microwave ready meals brought in by loved ones), there was a library of books and up to date newspapers and magazines. The radio was usually on Classic FM.

Dad had lived to 84, had played tennis up until his skin yellowed and we had got him into A&E fast. During the month’s swift decline, he had moved along his ‘palliative care pathway’ (god how we love our distancing terminology) relatively smoothly, until he ended up on the Liverpool one, much to the consternation of my step mother: “Why are they sending him to Liverpool?” she cried once.

We argued against him coming home as he did not want to turn his home into a hospital and be surrounded by machinery and sterilised equipment, nor could my step mum cope.

So, with communication and choice, pathways, plans and shared decision making, I found myself one evening by his bed. As he slept, pain softened by carefully dosed morphine, I bent over his bed, grasped his hand, whispered ‘I love you’ and ‘goodbye and ‘see you tomorrow’ and slipped out of the room and downstairs.

I put 50p in the vending machine and down dropped two KitKats for the price of one. That was when the fire alarm went off. It stopped after a minute. I checked in with one of the nurses who said that she would pop her head round his door every ten minutes.

I drove home slowly via the Heath where we had gone for family walks hundreds of times to feed the birds. I parked and strolled across a field in the dark. A fox dashed past me. That must have been about the time he died.
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Plastic Flowers

Meanwhile, mum came out of hospital to die. Suffering from depression, neurological problems and deafness, she went back to her nursing home. The carpets were threadbare, the fixtures dirty and cheap oil reproductions hung on the wall. Plastic flowers.

Visitors to her musty room noticed how the wallpaper was peeling away. My mum had lost her sense of humour ten years previously. Her bed sores had got worse in the last few months, as the physio stopped coming and as her care plans were less frequently monitored: “help me” was her usual cry. Or: “don’t leave”. She was scared of the night staff.

The smell of piss and vomit hung just beneath the lavender air freshener. We brought our own biscuits. The TV blared out across the communal lounge and the ‘residents’ struggled to get the attention of the harried staff. Old Hello and OK magazines lay in scattered piles.

Mealtimes were an ordeal. We had to slowly spoon liquidised mush into her mouth. But this Viennese fine pastry cook refused any food in the end. Once or twice we managed to push her round the small lawn littered with dog ends in a squeaky British Red Cross rented wheelchair. We cried a lot, surrounded by sparrows.

Mum had lived to 81, had given up tennis long ago, and when her second husband died went into steady decline. Lonely and anxious, her mojo had given way. Maybe the past caught up with her (she was a Jewish refugee on the kindertransport), or perhaps the death knell had started to sound after seeing me struggle through my mental health problems (which she found impossibly hard to deal with) and after her second husband died. Whatever the reasons, she went downhill for ten long years.

Her ‘pathway’ was more like Hangar Lane Gyratory System in the rush hour; uncoordinated and lacking in compassion mostly. She had to be moved in regular succession from warden assisted housing, to assisted living centre to residential home and finally to a nursing home. She fell between numerous cracks in the health and social care system.

During all this, she broke her hip and was holed up in a godawful community hospital for weeks. That was the beginning of the real end. Later, after several hospital admissions (dehydration) where she lay immobile in a geriatric ward, surrounded by screaming patients, next to windows left open, she came back one final time to the nursing home.

So, with communication and choice, pathways, plans and shared decision making, all lacking, I found myself one evening by her bed.

That afternoon, I was told, she had exhausted herself by ripping at the wallpaper. When I arrived, she was asleep, small white strips curling down over her head. I watched her for a few hours, then bent over her bed, grasped her hand, and whispered ‘I love you’ and ‘goodbye’ and ‘see you tomorrow’. And slipped out of the room and downstairs.

I drove home down the main road, guiltily praying that she would soon be at peace. We got a phone call the next morning saying that she finally was.

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Parity of Esteem?

Two deaths. Six miles and six months apart. The same country. The same family. Two deaths so different to one another. Why?

RIP John Gilbert
RIP Vera Rogers

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David Gilbert is a former mental health service user. He has 25 years experience of working with, and for patients. Amongst other things, he was Head of Patients and the Public at the Commission for Health Improvement, and Patient and Public Involvement Director at NHS Croydon. He has also worked at the Kings Fund, OPM and Consumer Association. He set up InHealth Associates seven years ago. He was co-founder of The Centre for Patient Leadership that originated the notion of patient leaders and patient leadership (with Mark Doughty), and was awarded ‘star leader’ status in the recent HSJ/NHS England Patient Leader Awards. He currently works part time as Patient Director, Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. David is a leading thinker and doer in the field of patient and public engagement and is a respected strategist, facilitator, researcher, trainer, writer, connector and communicator. He has worked with over a hundred local, national and international organisations to help develop effective ways that patients can be true partners in health and healthcare.