High points, low points

By Rosie Stewart

Diana Shelly, 63, is chairman of the Cally Rail Group, a pressure group campaigning against the negative impact of the King's Cross development in the Caledonian area of Islington. She lives in north London with her partner Phil. Here she describes the death of her mother Isobel.

IT WAS as if I was a spider on the end of a thread, dangling over a void.

I realised there was something wrong with Mum at the end of March 1995, when she was staying in Somerset with her friend Rene. She suddenly had a black out and fell down. She started to go to the Royal Free in London for tests.

Isobel was fiercely independent and she didn’t want me to come with her. She was curious, alive, and she always wanted to know things. She was also stroppy as hell and very determined.

Then the care team called: “We’re really worried because she’s called us out twice running because she’s fallen over, we think she should go into hospital.”

I went tearing up to her house in Hampstead, dropping everything from my desk at UNISON where I worked as a communications officer. I was on automatic. I went to the hospital in the ambulance. I sat in casualty for four hours waiting. Then the doctors said: “We can’t work out what’s wrong with her. We’re sending her home.”

They suggested that she go home in a taxi but there were steps and she could have fallen and hurt herself. I had to fight to get her home in an ambulance. By this time she had periods of incontinence and was blacking out again.

After 24 hours I stamped my tiny middle class feet and threw my weight around. I spoke to a doctor who said, “Can’t you look after her?” They talk as if you can suddenly leave your job.

I had this completely sleepless night and then called the care team and cried down the phone to them. They gave me the strength to go back to the doctor. That was at the end of April and we had about a month in which they were doing tests.

The consultant asked if she drank and I said she did drink a little more than I was comfortable with. Immediately they think there’s a big black cross against her, she’s an alcoholic that’s why she’s falling over. Then they asked: “Is she always this muddled?”

This was a woman who did the Guardian crossword - and I don’t mean the quick crossword - over her breakfast before she’d finished her coffee. We’re not talking about someone who is muddled; we are talking about someone who is ill.

They would do one test and then we would wait. Then they’d do another and that would take another week.

The horror is that you think, “Do I get what I want by throwing my weight around or do I then become one of those really difficult people who go to the back of the queue?” It’s a really fine balance.

Isobel never left. We went through four or five weeks of this achingly slow diagnosis and eventually they worked out it was cancer. She had a brain tumour.

After a certain point I realised that she’s not going to remember who I am. My first inkling of that was when she woke up one day and said, “Hello, Gillian.” I think I was prepared for that. I just knew there was a point when she wouldn’t realise who I was at all. But it was very intermittent: I’d get a very rational conversation and then it would go away again.

I knew that she was really scared of getting Alzheimer’s or something like that but by the time I knew it was a brain tumour I couldn’t talk to her about it. I didn’t know whether she’d understand and I felt it was too much of a burden for her. We discussed with the doctor the possibility of radiotherapy but we knew we would just be prolonging it.

Then her wonderful friend Rene said: “You know your mother always said that she just wanted to slip away.”

If all you’re doing is prolonging someone’s life in the most painful way then there’s just no point.

We made her as comfortable as possible and it got to the point when I sat there saying, “It’s all right, you can go now if you want to.” She died at the beginning of July.

Grieving takes a long time. It’s step by step. Immediately it’s more about the practicalities: the funeral, the council tax, bank accounts, all that sort of stuff.

It was such a roller coaster, but there is a point when you want normality and you want something you know how to do. I needed a structure. I needed a routine and I needed to realise again what it was I could do well.

There’s also a certain point at which you don’t wake up every morning and think, “My mother’s dead.” You come out of a tunnel. You can see the light for a long time and eventually you reach it.

I’m an only child and I realised that I didn’t have a clue about anything to do with my family apart from my parents. So I started to research my family history and it’s become very important to me. I feel I know where I come from. I have a security now; I call it a backstitch.

When you’re backstitching you’re going back, underneath and forward. That’s what I see myself doing because I’m trying to stitch myself back into history.

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