How would YOU cope waking up to find your partner dead in bed?

Carolina Setterwall wishes she didn’t know the answer to that. Here she recounts how she handled hers and her infant son’s grief in the hours, months and years that followed 

There are certain events in life that change you so profoundly that you start thinking of them as razor-sharp dividers separating a ‘before’ and an ‘after’ in your history. These events not only change the world around you, they change you as a person. In my case, the transformative event was finding the person I loved and had lived with for five years dead in bed at the age of 34.

It was a Monday morning in October 2014 when I went into our bedroom of our Stockholm flat to wake my partner Aksel. I’d spent the night on a mattress in our eight-month-old son Ivan’s room as he’d been suffering from night terrors and the only way to get him back to sleep was for me to breastfeed him. Aksel and I often ended up in different bedrooms; we even joked about how Aksel and our cat would sleep in one bed while our son and I slept in another. But it wouldn’t last for ever, and at least we got to see each other over breakfast.

Aksel was freelancing as an IT technician; I was on maternity leave from my job in PR and lately had been feeling both lonely and bored. Plus, I was worried about Aksel’s workload. It was only a matter of weeks until he was to take on childcare when I went back to my job. Or at least that was the plan. But Aksel insisted he couldn’t afford to give up his freelance clients and would work from home while taking care of Ivan, and continue working in the evenings. I thought it was a crazy idea, and we’d been arguing a lot. He seemed tired and I would be quick to use it against him. ‘See,’ I would say. ‘You can’t work this much and also take care of our son.’ ‘I’m doing my best and I have to make it work,’ he’d reply.

Aksel with Carolina on holiday in Tokyo in April 2012, during cherry blossom season. ‘We were stunned by how beautiful it was,’ recalls Carolina

The previous evening, Aksel had sat working at the kitchen table while I settled Ivan in bed. I’d texted to tell him I planned to sleep where I was. He answered, ‘OK, goodnight’ – and that marked the end of our five-year-long thread. I was feeling almost rested as I carried Ivan in my arms and went into the bedroom the following morning. I don’t remember opening the door because it’s just something you do when you enter a room; it doesn’t mean anything – at least not in the ‘before’ version of my life. Seconds later, everything changed.

I placed Ivan on the bed so he would be the first thing Aksel saw when he opened his eyes, but as our son crawled towards him, I realised something was very wrong. Aksel’s skin was pale, and he was lying face down. Instinctively, I grabbed Ivan and stopped him. After a moment’s hesitation, I touched Aksel’s foot, which was sticking out at a strange angle. It was cold and stiff. I knew then that he was dead and had been for hours.

Within seconds, I was no longer a sleep-deprived mother waking up her baby’s father. I was a widow calling 999; I was a woman carrying her child on one hip and using her free hand to check a body for a pulse without finding one; I was a person trying to figure out a way to get through the next few minutes. ‘Just until the ambulance arrives,’ I remember thinking, because I couldn’t go further than that. And then I wrapped Ivan in a blanket and left the apartment.

In the first hour

 My memories of the first hour are hazy. I know I sat on a bench in the back garden, and I remember feeling ashamed about being outside in my pyjamas when a neighbour passed by, but I don’t remember if we said hello. I know I didn’t cry because I remember wondering whether it was weird for me not to. I just sat there. Waited. My phone later informed me that I had sent out text messages telling our friends that Aksel had died, and to some I had even replied when they asked me if I was kidding. ‘No, true,’ I had written. Then, nothing.

I don’t remember calling Aksel’s brother but I know that I did, because he was the one who called his parents and other siblings. Within an hour, my family and the whole of Aksel’s joined me. Somehow I was escorted back to the flat. Inside, people around me took charge and gently told me what to do. ‘Here are some clothes, come and let me help you get dressed,’ one of them said, and I did. ‘Here, sit on the sofa and feed Ivan,’ another one said, and I obeyed.

Still no tears. Still not able to comprehend what had happened. Just trying to avoid the inevitable moment when the doctor, who had arrived to examine Aksel’s body, would try to make me go into our bedroom to say farewell. I absolutely did not want to go into that room again; not that day, not ever. Among all my feelings, that was the strongest one during the first hour. When the doctor said that he thought I should do it, I started to cry for the first time that day. ‘Please don’t make me,’ I begged. Everybody around me said that I would regret it if I didn’t; that I should see Aksel one last time.

And so I did. He looked peaceful and pale. I kissed him on his cheek and it was cold. I took his hand and it didn’t squeeze mine back. I said goodbye because I had been told to, but I felt numb, as though I was alone in the room, which, in a way, I was.

Days after

The first week, I was never left alone. Family and friends moved into our flat and made a schedule so that I would always have at least one person with me. I remember there were flowers everywhere and that people constantly tried to make me eat.

For the first three nights, I stayed in Ivan’s room. I lay there, next to my son, trying to breathe normally. It took me four nights to be able to sleep at all and six to decide to go back into the room where I had found Aksel dead. My friends had, with my permission, taken our bed away. The room felt empty and I couldn’t collect my thoughts. Still, by the end of that first week, it was clear to me that I was to blame for Aksel’s death and that I had killed a kind person just by being me.

Lying next to Ivan at night, I went through hundreds of pictures on my computer, trying to figure out exactly when Aksel had become ill – the moment when I should have taken his fatigue seriously and forced him to see a doctor. When he had complained about feeling exhausted, I had met his complaints with my own – telling him what it felt like to breastfeed every night and never get more than an hour of sleep. I had pushed him with my demands of shared chores, that he clear his schedule to make time for me and his son. When he told me he felt anxious about making his paternity leave work, I hadn’t said, ‘Should I stay home longer? Would another few months make it easier for you?’

Aksel with four-month-old Ivan in a local park, 2014,

Instead, I had pushed and pushed, forcing Aksel to do things my way, at my pace, as though I was the boss and he was my employee. Let’s move in together! Let’s get a cat! Let’s go travelling! Let’s get a car! Let’s have a baby! Come to think of it, I had been nothing but a terrible girlfriend the past few months, maybe even years. It had been weeks since I told Aksel how much I loved him because I was so busy nagging him. And then he died. And it was my fault that he had – of course it was.

‘You can’t blame yourself,’ friends and family said. ‘This is not your fault.’ I remember feeling provoked because, really, what did they know? When Aksel’s parents texted me and asked me how I was, I felt so ashamed it took me hours to come up with a response. Sometimes when they called, I asked a friend to lie and say that I was sleeping because I couldn’t face the people whose terrible loss was my direct responsibility.

Months later

Aksel died in late October; we buried him in early December. In the chapel, when family and friends came up to hug me, I thanked them and used my son as a shield so that they couldn’t get too close. When the officiant gave her speeches, I cried silently with my eyes kept on Aksel’s picture, my tears falling gently on to my son’s scalp. I made sure not to sob too much. The least I could do for Aksel was not to steal the show.

By that time, I was seeing a therapist who specialised in grief. She listened to my guilt and self-hatred and not once did she tell me I wasn’t allowed to think that way. She listened and I cried. Sometimes I started crying in the waiting room and kept on sobbing until I was back with Ivan, who was waiting with one of my friends in his buggy. I developed a technique where I would cry only when I was alone or in my therapist’s office. Never with Ivan, because I desperately wanted him to be happy and I thought that in order to make that happen, he needed a mother who at least pretended she was happy, too. Sometimes I didn’t have to pretend. There were days when my smiles and laughs came naturally. There were other days when all I did was pretend. I pretended to function as a mother, as a person, as a friend and, after about a year, as an employee.

After six months, I learned that Aksel had died of undiagnosed cardiac disease; doctors reassured me that he died peacefully and without pain. It would take me another six months to accept that his death was just one of those things that happen, without anybody being to blame. By that time, Ivan and I were living a family life of our own. Our first summer without Aksel came and went. I joined my stepmother on her holiday. I saw Aksel’s parents a lot, and after a while I started relating to them as Ivan’s grandparents. They were always close by.

Years down the line

Nearly five years have passed since that October morning when my life was divided into a before and an after. Inevitably, Ivan and I have been discussing death since the moment he started talking. Always on his terms, never on mine, because that’s what all the child psychiatrists told me I should do.

In Sweden, where we live, there’s an expression: ‘grief is striped’. It means that the grief comes in stripes rather than being compact. I think this goes for children even more than adults. My son has had many days, even weeks, when he doesn’t seem to think about his loss at all. Then one evening, boom, it’s there. He’s asking what I believe happens after you die. And why it isn’t possible to visit his father in heaven when there are aeroplanes around. And where he would live if I died, too, just like his father. And if he was crying that morning when he and I found his father in bed, not breathing any more.

These conversations aren’t easy. My instinct says I should protect Ivan and that he is too young to have these kinds of thoughts. He should be worrying about whether or not he’s getting an ice cream on Saturday evening rather than what would happen if I died, too. But we talk about it regularly. And we talk about Aksel – the kind of man he was, how much he loved him. We look at the pictures that I went through trying to find answers during the first weeks. Then we get an ice cream from the freezer or go and play in the yard behind our house.

Carolina and Ivan, now five, in the Stockholm park they walk through every day on their way home from Ivan’s nursery

Now I am the mother of a five-year-old son and a seven-year-old stepdaughter. I am a full-time writer and the partner of a man who happens to share my experiences of losing a loved one at a young age. I am also scarred; constantly afraid of losing the people I love. The moment before I wake somebody up, be it a member of my family or a visiting friend who is sleeping on my couch, I get so scared I nearly panic.

I no longer blame myself for Aksel’s death but I still dwell on it. What if we had gone to the doctor’s? What if I hadn’t been so hellbent on us doing things at my pace and had waited for him more? What if I hadn’t fallen asleep next to our son that night? What if I had told Aksel I loved and appreciated him more often? Would things have been different? There are still a lot of ‘what ifs’ in my head.

And the Carolina who went to bed next to her son the night before Aksel died? Well, she died too. 

• Carolina’s novel Let’s Hope For The Best, based on her experiences, is published by Bloomsbury Circus, price £14.99. To order a copy for £11.99 until 28 July 2019, call 0844 571 0640; p&p is free on orders over £15