Choosing to die at home

Louise’s husband was diagnosed with Stage 4 Bowel Cancer when she was pregnant with their youngest daughter, he was treated for 5 years before dying at home. Louise is a former Mummy's Star Team member and shares her experiences of living with grief through her blog and Facebook Page

Choosing to die at home

We had just visited a friend in the local hospice. We had never set foot in there before, certainly not since the cancer diagnosis, but we had been pleasantly surprised. We sat in the car, the rain hammering on the windscreen. Despite knowing that his cancer would eventually end his life, we had never actually discussed what we would do. Now was the chance.

'Do you think you could go there if you needed to?” I asked hesitantly. We talked about how we would manage bringing the girls, how hard it would be to say goodbye each day, knowing we might not see each other again. He would rather stay at home.

We discussed the implications of this. Did we have enough room around the bed for nurses? Would we need any special equipment? Who would he be happy to help if needed? What would the children think? After a few minutes we came up with 3 rules. He would remain at home as long as -

I was able to cope

His pain and other affects could be managed sensibly

The children weren’t scared

Sensing the conversation had gone on long enough, I just had one more question.

“Is there anything in particular you want for your funeral?”

The words seemed to physically hurt as they came out of my mouth.

“No” he said, “I trust you.”

At the time this seemed ever so sweet, but in the weeks to come I started to feel like it was a cop out! There were so many decisions I would have to make on his behalf… alone. We had 4 years of knowing, but it took us until we only had weeks left together to face it.

But knowing we did have that conversation was always a comfort. It was the only time we ever talked about dying and I’m glad we did. Having that short, difficult conversation in the car in the rain, would end up being one of the most important we ever had as a couple. It gave me confidence in my decisions. When well-meaning relatives told me ‘it was time to go a hospice’ I knew I could say with certainty that we had decided together to remain at home, I could tell the GP that this was the plan and get the support I needed, that our girls would know he wanted to stay with them as long as possible, and that this was his choice. That the last gift I gave him was honouring this wish.

After 5 years of treatment the staff at the hospital knew us well. He had been ill on so many occasions, both long hospital stays and overnight observations, and each time I had convinced myself that this could be the end. But now it was really here it was hard to take in. The specialist nurse spoke to me alone as another took him for a blood test he probably didn’t really need. She was kind but firm. She helped me put a plan in place.

The next few days would see family and friends stopping by. The children sat with him in bed watching films on the laptop or reading while he slept. It was my Mum who asked “do the children know what’s happening?” well of course they do, we’d talked about it loads of times, the cancer would eventually make Daddy so poorly he would die. But did they know this time was now? Sitting with my 4 year old and explaining that Daddy would die soon was the hardest conversation. Her small face looking up at mine, reading my emotions, yet equally keen to get back to playing her game. I was telling them to be quiet, getting cross because Daddy was trying to sleep. He told me not to worry. “About what??” Don’t worry about the noise. He wanted to hear them play, their silly arguments, their laughter and their songs.

My 7-year-old said that those last days were like watching Daddy’s soul leave. That his body was so broken, and he didn’t need it anymore.

After a night filled with visits from some respectful and amazing nurses, he died peacefully in the morning while the girls ate their breakfast downstairs. As I sat with them, they saw my face and they knew. At 4 and 7 it’s so hard to know what they understand, but as we held each other in that moment I knew we had done all we could to prepare them for this.

With wisdom beyond their years they made a sign for the living room door NO GROWN UPS ALLOWED (except mummy), creating a safe space for themselves to play and talk without unwanted interruption. They wanted to see him. I wasn’t sure if this was the best idea, but the fear of them resenting me when they were older for not letting them forced my hand. We stood together, starting a new adventure. They stayed only a few minutes, the finality of this almost seemed lost on them. But it became clear over the next few days that the intimacy of that experience would bring us closer together than ever.

Family and friends gathered, cups of tea were drunk, someone made a massive pot of chilli. Our home was filled with love and celebration of a live well lived. Dying at home wasn’t scary. The girls slept in bed with me that night, not wanting me to be alone. We changed the sheets together and they passed out in a messy heap as I stroked their hair. Secure in the knowledge I had done all I could.