Janet’s husband Mike was diagnosed with advanced prostate cancer in 2008. Sadly, he died in 2010, 20 months after he was diagnosed. Janet now volunteers with Prostate Cancer UK as part of our one-to-one support service. Here, Janet shares her experience of trying to talk to her husband about dying.

Photo of Janet and Mike

Janet's experience

When my husband Mike was diagnosed with advanced prostate cancer, things looked very bad. For the 20 months between when he was diagnosed and when he died, we didn’t talk about the fact that he was going to die.

At first we didn’t talk about Mike dying because the doctors and nurses didn’t bring it up. The doctor who diagnosed Mike said, “Things are very bad, but some people live for 10 years – you’ve got to think positively.” So we didn’t realise how bad things were initially. And we felt we had to think positively.

It sounds strange but I felt that if I talked about dying, it would make it more real and more likely to happen.

I felt that if I talked about dying, it would make it more real.

 

Putting on a brave face

Mike himself didn’t want to acknowledge that he was going to die from prostate cancer. I could hear him telling his friends on the phone that he had prostate cancer but was fine. So people would say to me, “Oh, the chemo is going to cure him.” or “He told me he’s going to be okay.”

He’d put on a brave face in front of his friends and family and then be exhausted for days afterwards. He’d tell everyone he’d been feeling fine but then he’d cry out in the night or not be able to get to the toilet in time.

I think at some point Mike did realise how bad things were. But I think talking about dying was too painful for him. He wanted to pretend things were okay and protect his dignity. And I felt I had to do that as well and not tell people how bad things were. It meant I had to cope with a lot by myself.

I think talking about dying was too painful for him.

Not talking about things made it difficult because I still thought that Mike might be able to have treatment. I quietly asked the doctors about different treatments I’d read about. They told me that for Mike, there was treatment that could possibly prolong his life by a short while. But it could affect his quality of life. I wanted Mike to have quality of life – for us, five good weeks were better than five months of sickness.

Trying to talk about it

I did try to talk about how serious things were, but Mike didn’t want to talk about it. One time, I left an end of life information leaflet around the house, hoping that he might read it or that it would help us start a conversation. Mike picked it up and said “What’s this?” I told him that the nurse had given it to me with the other leaflets. He said, “I don’t know why she did that.” I think we both knew though. I wanted him to accept how ill he was and I also felt guilty for wanting that.

At the end of Mike’s life

In the end, Mike knew I was there for him. We were in the hospital. I asked the nurses what I could do. I helped with moistening his lips to stop them getting dry.

When he was drifting in and out of consciousness, I didn’t know if he could hear me or not. So I said, “If you can hear me, can you squeeze my hand.” He raised his hand ever so slightly and his mouth opened like he was trying to talk. So I knew he could hear me. I opened my heart and told him everything I needed to say.

He was unconscious for ten hours before he died. I sat with him and held his hand. It was an enormous privilege to be there for him at the end.

It was an enormous privilege to be there for him at the end.

My tips for when your partner or relative doesn’t want to talk about dying

  • Sometimes you need to accept that some people don’t want to talk about dying. I couldn’t keep trying to have a conversation Mike didn’t want to have – it was too painful for both of us. I felt that it was his death and had to give him control over how he approached it.
  • Find someone you can talk to. I needed to talk to someone about what was happening. A friend who is a hospice nurse saw that Mike was very ill and asked me openly about it. Finally someone had given me permission to talk about the thing I feared the most – Mike dying. I’d been keeping all my fears and worries inside for months.
  • Connect with people who understand. I found it so useful to be part of the online community and get one-to-one support. Everyone’s situation is different but they can give you an idea of what to expect and support you through the toughest times. No one can understand like someone who’s been in a similar situation – I feel I can be myself with them.
  • Look after yourself. When Mike was ill, I felt that all my needs should be secondary. One day someone said to me, “If you don’t look after yourself, you’re not in a position to look after him”. I suddenly realised the importance of looking after myself so that I could best support him. I started making time for me and not feeling bad about it – sleeping, resting when I couldn’t sleep, and eating healthily.

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