2018: the year I became a grownup

2018 was the year I finally started to feel like a grownup.

Early in the year, I turned 60. I grumbled a bit at the lack of state pension and I bought myself a “senior railcard”, which I loved and was strangely proud of: it felt like a rite of passage. That wasn’t what made me feel like a grown-up, though.

I didn’t realise how momentous the year was going to be. How much my life was going to change. How much I was going to change.

Spring

A few months after my birthday, I went to my mother’s to celebrate hers. She was 84. I told her I’d been thinking a lot about mortality since turning 60. She told me it wasn’t something she thought about: “There’s no point.”

She also told me about the state of her joints (not good, but she didn’t complain), and added proudly: “My doctor says I am organically fine.”

Her GP doesn’t seem to have based this on any actual evidence. We would find out later that it was entirely untrue.

Summer

In June, I had an assessment for autism, and it confirmed what I’d thought for ages. I am #ActuallyAutistic.

I was pleased, but it was still a big deal. It changed the way I looked at myself, and the way I looked at my family, and my understanding of how we all communicate (or not). This would turn out to be timely information, that would help me navigate – almost successfully – a family crisis that took over the final few months of the year.

But first, there was news from my in-laws.

In July, Husband got the phone call from his brother he’d been expecting for a long time. They both knew what it was about so they even made small talk for a while before Brother-in-law actually said that their father was dead. Father-in-law had been in bed and in decline for a few years. No-one was surprised, or particularly sorry.

There was a small family do after the funeral. “It’ll be us next time,” said Brother-in-law cheerfully, over the bacon butties.

We knew things were shifting, but not how quickly.

I didn’t expect what happened next.

It started with a chirpy email from my mother at the end of July: “I'm having some tests at the moment. Hard to believe but for about a month I've been eating less.” It was hard to believe: Mum’s the sort of person who on an afternoon out always looks for the tea-room. I should have been worried.

She kept downplaying things, and I took this at face value, because I’m Aspie and I believe what people tell me. For weeks, she continued trying to not worry us, until suddenly she announced that the next step was “to see if we can eliminate bowel cancer”.

I got the email the day we got back from my father-in-law’s funeral.

I’d arranged to visit my sister the following day. It was a bright summer afternoon and we sat in the garden and eventually talked about Mum’s mystery illness. “Do you think it’s cancer?” I asked. “Yes,” said my sister.

“Do you think she is going to die?” “Yes.”

I sat there stunned. All I could say was: “I don’t know what I’m supposed to do”.

Autumn

I learned.

First, I learned to wait.

We waited for Mum to get her appointment for the cancer tests. Then we waited for the results. Then we found out it wasn’t bowel cancer after all. It was worse: advanced pancreatic cancer. Nothing to be done, but wait again.

For two months, as summer turned into autumn and the garden she had nurtured for 52 years started to fade, I waited for my mother to die. For two weeks I saw her progressing towards the end; for two days I watched her go through the final lonely journey they call “actively dying”.



At first, I told myself it was OK. I discovered the average life expectancy in the UK is 84, which meant we were on borrowed time. I knew lots of people my age had lost their parents, and they seemed matter-of-fact about it: it was what happens. But I hadn’t expected it to happen to us. Not yet. My Nana – Mum’s mother – lived to be 96. That was our benchmark.

I reasoned that the timing was OK, even if it was a shock. Mum had been afraid of dementia (she’d seen her friends get it); I had been afraid of her going into a home (I’d seen her friends do it). We had time to say goodbye; Mum had time to find out how much people thought of her. Mum was a Christian so she wasn’t afraid of death. It was the best way for her to go.

But I didn’t want her to go.

I’d always thought I’d be fine when it happened. Because of the reasoning above and because, I would have said, we weren’t close. We’d never worked out how to communicate, because we couldn’t talk about our feelings. But I’d started to adjust (my autism diagnosis helped) and to look forward to seeing Mum and to find things we had in common to talk about.

And I found out I wasn’t fine. There’s a primal fear that kicks in when you’re going to lose your mother, and it overrides any logic. Even before we got the diagnosis, the stress symptoms hit me. I felt so bad one night I had to look up what was happening. I learned a new word: dissociation.

Later, I learned lots of new words. Palliative care. Syringe drivers. Terminal restlessness.

And I finally learned to say: “I love you”. After a while, we said it every time we parted, just in case. So it was the last thing I said to Mum, and it was the last thing she said to me.

Winter

At the funeral, people kept saying: “You’re the matriarch now.” I’m not sure how that works when I am not actually a mother, but as the eldest sibling I suppose that makes me head of the family.

My Mum’s cousin told me what it would be like: “You don’t have anyone to ask things any more.”

So who can I ask now: “What am I supposed to do?”