How it REALLY feels when your husband has dementia

Jill Butcher cares for her husband Laurie who has frontotemporal dementia. Here, she recalls his diagnosis and how it changed both their lives.

My husband was diagnosed with Frontotemporal Dementia in 2013, after years of bizarre behaviour. The first person who suggested that Laurie might have dementia was our garage mechanic. “I recognise the symptoms,” he said. “My father-in-law was like that.”

I made an appointment with Laurie’s GP. “Dementia?” he said. “No. It’s a personality disorder. He plays bridge, doesn’t he?”

I nodded.

The doctor continued. “He couldn’t play bridge with dementia. He wouldn’t remember the cards.”

So that was that. I accepted it. I hadn’t heard of FTD and nor, I now realise, had that doctor.

In the year up to Laurie’s diagnosis the police visited our house five times. He was banned from two supermarkets, a pharmacist, a leisure centre, a library and his bridge club. By then all our friends had dropped us and I was mystified by what had happened to the man I had married. I thought about leaving him.

The diagnosis was a relief. Now I understood why my husband was so nasty. It wasn’t his fault and I knew I would see him through to the end. In a way it’s the diagnosis that traps you.

He couldn’t understand what all the fuss was about. He still doesn’t.

I read everything I could about dementia, but the book that grabbed me was Still Alice by Lisa Genova. It’s a novel about one woman’s decline from her first symptoms of early onset Alzheimer’s until the later stages. The writer had got right inside Alice’s head so that the reader experiences what it might be like to be Alice. I believe strongly that fiction can be more powerful than fact.

I wondered: Has anyone done this with FTD? I couldn’t find a novel about FTD, let alone one written from the point of view of an FTD sufferer. So I decided to write one.

My heroine, Effie, the carer, is my alter ego. She’s lot feistier than I am. She says things and does things that I would like to do and say, but I wouldn’t have the nerve.

My hero, Lionel, is based on my husband.

I decided after few chapters that I couldn’t write the whole book (named Beyond the Marriage Vows) from Lionel’s point of view because I wanted to show what Effie felt as a carer, and Lionel could have no idea about that.

So I’ve written some chapters from Lionel’s point of view and some from Effie’s. Of course, no one can actually know what Lionel thinks, but I reckon I can guess as well as anyone. It is fiction. I’ve had to invent Lionel’s side of the story.

For example, in one-chapter Lionel visits a leisure centre and behaves so badly that the police are called. All I knew about the real incident was that two policemen turned up at our house. I can guess what happened, but I could only write it as fiction.

Writing from Lionel’s point of view gave me an opportunity to bring in some humour. The book is an easy read. It’s fast-paced and funny, but fundamentally tragic.

I have found that support meetings and talks rarely tackle the subject of how dementia affects marriage. I have listened to carers of parents with dementia. Without minimising their trials, I wanted to say: “This is different. This man was my lover. We enjoyed intimacy. He’s the father of my children. And now I don’t even like him.”

It’s hard to be a wife and carer. One woman I knew called herself a “married widow.’ Another said she was ‘a widow without the benefits.’ Effie knows she is a ‘widow-in-waiting.’

And that’s going to be the title of the sequel – The Widow-in-Waiting. I’ve written a couple of chapters and I’ve plenty of ideas. There is, of course, only one end to an FTD story, and that’s going to be so hard. Meanwhile I am a wife and carer and it gets more difficult every day.

– Beyond the Marriage Vows is available on Amazon as a paperback or an e-book. Royalties are donated to the National Brain Appeal.

– Unfortunately, Laurie passed away in August 2018. Jill talks about the impact of his death here.