Mother of all Lists — What I'm Thinking As My Husband Dies

What I'm Thinking As My Husband Dies

I have known for five years that Greg would die of stage IV bowel cancer – I’ve read every book, I’ve had all the therapy and nothing has prepared me for this moment. I feel shocked to the core.
I’m so angry that as a society, we don’t talk about death and grief. It fucks us up. I’m thinking about the detail that my NCT classes went into about birth, about changing nappies, about breastfeeding and yet I knew nothing of the process of dying.
Death is so abstract. It reminds me of eating meat – you know it’s an animal and yet you can’t really get your head round that you’re eating a living being’s flesh. The brain seems to abstract certain concepts in order for us to put one foot in front of the other and eat a burger.
I was not expecting the emotional disengagement between us. I imagined Greg to be himself until the moment of his last breath. I now know this isn’t what happens.
I thought I would be camped bedside, holding hands until the end. For the past seven weeks since Greg went into end of life care, I’ve spent around ten minutes a day with him. He finds visitors overwhelming and too much.
Dying is a process. You are not just alive feeling very poorly and then you slide off into the universe. In our case, it’s been long winded with good days that follow bad days.
My friend Anna Lyons told me that who people are in life, they will be in death. This could not be truer.
I can’t get my head round where Greg will go. If I were religious, this would be so much easier.
I feel like an alien in amongst humans; that I know this awful secret that we are all going to have to watch someone we love die up close and now I have to go about the daily human business of going to Sainsbury’s with this existential knowledge.
I’m so glad we wrote our wills a few months ago.
I’m thinking of those women sat beside their dying husbands, worrying about finances. We had critical health insurance and it has saved us (from when Greg was in a band and insurers believed that you are more likely to contract AIDS if you’re a musician. True story). The thought of having to work or lose your house in the worst moment of your life is sickening.
The beginning of the end came from nowhere and is now like a toboggan hurtling down a mountain.
I want to be around so few people at the moment. Only people who are as close to Greg as I am.
I crave being alone. There is so little space and time to process anything that’s happening.
This is a liminal space, like a dreamlike waiting room. I recognise everything around me yet nothing is the same. I feel like we are all moving underwater.
There is so much silence and waiting around. There is lots of small talk about nonsense.

Making dark jokes have kept our inner sanctum sane. Greg and his brother Aaron thought about pranking their parents by putting a white sheet over Greg’s body and announcing he had died. This is the perfect insight into their family’s humour and it is so welcome now.
I’m finding my feet talking to the girls about Greg dying. My policy is I will tell them everything I know but they ask me questions that floor me, like: ‘How can we let our dog know that daddy will die?’ and ‘Will dad ever have a haircut again?’
Sitting with them in their grief while I try to process mine is the hardest thing I’ve ever done. Holding the space to meet them where they are at, rather than where I would like them to be feels mostly impossible.
I’m scared of the future, in particular the girls’ teenage years. I don’t know how I will navigate it on my own. I was a sassy, difficult teenager and even at five and seven, Dali and Bay are mini versions of me.
The physical feelings of grief are often overwhelming. It feels like morning sickness, being drunk and a hangover all at once.
I feel like I’ve had a lobotomy. As quickly as thoughts come, I can feel them leaving my head, lost into the ether.
Who do I phone first to say that Greg has died? Who gets an actual call and who will get a WhatsApp message? The thought of phoning people and having their grief mirrored back to me is too much.
I thought I would be with Greg when he actually died but now I’m not sure at all. I don’t think he wants anyone with him. All the nurses tell me that people die when loved ones go to make a cup of tea. I can absolutely see that happening.
I keep thinking that this is almost over, as if there is some kind of salvation on the horizon. I think that may be when the real work starts.
Other people I love are going to get cancer and die and at the moment, I have no idea how I will find the strength to do this again.
I feel like a child and an old woman all at the same time.
I’m starting to feel reckless. Like everything and nothing matters all at once. I wonder how that will manifest after Greg dies.
I’m thinking about what I will wear to the funeral. How I will buy something fabulous, keep the labels on to take back afterwards because I know I will never be able to wear it again.
I want to look like a full on Italian mobster widow. If I have to be a widow at 41, I may as well be a fabulous one.
I’m wondering if my waterproof eyeliner is all it’s cracked up to be and if I should risk it at the funeral.
I hope there aren’t people at the funeral who didn’t really know Greg that rock up and sit near the front while close friends have to stand outside. How do you police that?
How do you sum someone up in three songs at a funeral?
There is so much left unsaid. So much. You think five years of knowing your days are numbered would mean you say all the things – you don’t. Relationship dynamics get in the way.
There is so much I would like Greg to know about how he has hurt me over the years, that I’ve had to keep to myself because cancer trumps everything. That time has gone.
I have been silently angry with Greg over the past few weeks. I didn’t know you could have so much anger at someone who is dying, it feels very inappropriate.
There is so much I would like Greg to know about how much I love him, all the ways that having him as my person has shaped me.
I listen and dance to his music in the kitchen when the girls’ are at school and I can feel who he was when he wasn’t ill. It makes me feel young and hopeful again.
Listening to The Woman’s Work by Kate Bush before going to sit by the bedside of your dying husband is a rookie error.
The joy of just sitting in silence for five minutes watching him breath is like a religious experience.
I want to smash the universe to pieces to bring him back from the precipice of death just to have one more conversation with him, something trivial, anything. Just to hear his normal voice say my name.
I can’t bear Greg’s belongings in our bedroom; his half-read books by the side of the bed, half-eaten packets of favourite biscuits. I want to throw it all out and paint the walls.
I can’t bear the thought of anything changing in our bedroom; it will be as if I am getting rid of us. I’m homesick for another time.
I hope people don’t send me lots of flowers, I’m really allergic.
I desperately want to go on holiday.

I want it to be over but I never want it to end.

This list was written byStacey Heale is an influential writer, campaigner and curator who is outspoken on the topics of loss and grief. Promoting and inspiring honest discussions on the lived experience of caring, loss, grief, and beyond, Stacey speaks candidly on those topics based on her personal experiences.