I wonder if anyone but me even thinks about him

Jill Butcher cared for her husband Laurie who had frontotemporal dementia. Laurie died last year. Here, in an extraordinarily honest blog, Jill reveals the complex nature of her grief and loss

I had a lunch party at Easter. There were twenty-seven of us – our children and grandchildren, my relatives, and Laurie’s relatives. Easter is supposed to be a time of renewal, and maybe that’s how I should see it.

I hadn’t entertained at home for over nine years. The last party was at least three years before Laurie was diagnosed, but looking back, the symptoms of frontotemporal dementia (FTD) were already destroying his personality. I couldn’t understand why my previously sociable and popular husband had become so difficult. What he thought were jokes and witticisms were tactless put-downs. Some people left early, and I vowed I would never entertain at home again.

He died on August 4th 2018. Is it really that long ago?

The final downward path to his death began a few months before. For some time, he’d been sleeping fully dressed. He hadn’t washed or showered in months and wouldn’t changed his clothes. I tolerated that, but I couldn’t tolerate him wetting the bed. I could change the sheets, but I couldn’t make him change his urine-soaked trousers. That was why we fought, and that was when he hit me. We were moved from being under the Living with Dementia Team to the Dementia Crisis Team. I used a private care company who sent carers (in pairs) who managed to wash him and dress him in clean clothes. Not without abuse, but they did it. What saints! I thought.

The Dementia Crisis Team thought it was time to find a care home, but those that came to assess him said that they “couldn’t fulfil his needs”. That meant, I assumed, that they wouldn’t be able to cope with him.

The excuse for the party last weekend was the inauguration of my new kitchen. I had spent a large proportion of Laurie’s and my savings having the kitchen and dining room gutted and knocked into one big kitchen-diner. I now have glorious yellow kitchen units with everything sunny and new to go with them. Believe me, it’s gorgeous.

But another reason for the party was to renew my relationship with Laurie’s family. Some of them had avoided us for years. “We want to remember him the way he used to be,” one person said when I had asked them to pay us a visit three Christmases ago. A copout, I had thought. I soon learned that other FTD carers also experience similar avoidance tactics from so-called friends and relations.

When you are an FTD carer you certainly find out who your friends are. But some of them came to the funeral. Funerals brings all sorts of people out of the woodwork, don’t they?

I don’t know how long those wonderful carers would have kept Laurie clean if it hadn’t been for the next crisis. It happened in early April last year. Our daughter, Sophie, and her family were with us at the time. It was Sophie’s decision to dial 999. The ambulance took us to A&E. I felt curiously calm – I suppose I had learned to take this sort of thing in my stride.

Laurie was diagnosed with pneumonia and sepsis, and was unlikely to survive, said the consultant. There would be no invasive procedures used to keep him alive, and both Sophie and I agreed to that. Laurie, of course, was not asked and could not have had a view, let alone express one.

When I got home from visiting Laurie in hospital two days later, I found a number of messages and emails waiting for me. “We saw you on TV,” friends said. They’d seen the feature on BBC South-East about Laurie, FTD, and my novel, BEYOND THE MARRIAGE VOWS. Mark Norman, BBC health correspondent, had interviewed us in March. Laurie had behaved predictably badly for the camera, and Mark had given me the opportunity to read passages from my novel. Too bad, I thought. Why hadn’t I been told it was being screened today? But I watched it on I-Player and didn’t know whether to be sad or glad my poor Laurie would never see himself on TV.

Next morning, I learned that Laurie was not going to die – this time. And there was a cannula with a drip in his arm. “Does that hurt?” I asked him. He nodded. Isn’t a cannula and drip an invasive procedure? I wondered.

Should I phone Laurie’s brother to tell them Laurie was in hospital? No, I decided. They hadn’t visited last time. I didn’t even think they’d care.

They came to the party last weekend and we hugged and kissed and opened bottles of Prosecco. We sat in the sunshine and ate the buffet lunch that I’d cooked in my new cooker and laid out on my glittery kitchen surfaces. We talked about the garden and holidays, and children and grandchildren. I’d planned to propose a toast to Laurie’s memory. But I bottled out, because I was afraid I’d cry.

The sun was shining, and sky was blue and I think everyone enjoyed themselves. So did I. Honestly, I did. But I did notice that not one of my guests mentioned Laurie. It was as though he had never existed.

I wonder if anyone but me even thought about him.