What happens when we die

Every death should be like my mum's.

Sue Edgar, born Sue Watson, 1954-2021.

On March 24, I wrote that I would have to take a break from Sick Note for some time, because my mum’s cancer had returned. I hoped that she would recover enough from her recent stay in hospital to get chemotherapy, which could extend her life by a few months. 18 days later, she was dead.

In that three-week period, from her leaving hospital to her passing away, everything felt so important. Every decision about drugs, or what sort of big foam thing we could buy to keep her propped up in bed, or what we should make for dinner, was agonizingly significant. Some things were important because they would impact her mental and physical health and the amount of pain she was in. Others were important because we knew her time to experience joyful things were limited. More simply, they were important because she was dying.

Here is how Mum died: Though the original tumor in her lung, discovered in 2018, was long gone, a few lymph nodes in the middle of her chest were still cancerous. Before she got sick again, we didn’t have a lot of reason to be urgently worried about those. Every scan she got over the past few years tracked the size of those little fuckers, and they never grew very much. In fact, after the scan she got in February, the lymph nodes were ‘stable.’ But then she got so breathless she had to go to hospital, and she never got better from that. My stepfather, Richard, is a retired general practitioner, and he explained that one of those lymph nodes was likely spitting out clots for some time—perhaps the ones that caused her pulmonary embolism in July of 2020, and one that lodged in her leg, which had caused her pain this past winter and had been confirmed on an ultrasound—and finally, one went to her heart, lodged itself in the left ventricle, and slowly killed her. That clot made it harder for the blood to flow around her body, making her breathless and swollen.

For some reason, the doctors at the hospital didn’t notice this swelling, or really do any physical exam at all when she was released. (This was incredibly frustrating, for all of us but especially for Richard, who had the medical knowledge to understand how important such basic measures were yet, because of Covid restrictions, couldn’t be in the hospital to observe her care or advocate for her. It certainly didn’t seem like they had much time for or interest in listening to the questions of an older lady with cancer, on whom they also pressed a horrible conversation about do-not-resuscitate directives when she was not ready and it wasn’t even clear to anyone why she was sick.) By the time she died, she was incredibly swollen, basically everywhere in her body except her right arm, and her beautiful face. Her torso, her left arm, her legs, were all balloon-like, swollen with fluid that had nowhere to go. (This is consistent with heart failure). I felt so angry at how helpless we were; couldn’t we just stick a syringe in there and get some of that fluid out, I thought, if it’s causing her discomfort? If we know it’s a clot causing this, why can’t we do anything? But we couldn’t. She was already on the maximum dose of blood thinners. It was just too late. It was just one of those things.

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When I wrote to you on March 24, it was actually quite a good day for her. She was able to get out of bed and downstairs, slowly, and even went into the garden with Richard and her portable oxygen tank, to look at the flowers she loved. She ate dinner with us in the kitchen. She tried taking her tube out a couple times, for a few minutes at a time, testing her oxygen sats after. For a couple days, I thought she was making progress. But then she got worse. Breathing became harder. Stairs were a nightmare that she dreaded. I kept hugging her and breathing as deep as I could, as if I could breathe for her. She was, understandably, very anxious about what was happening.

One night, a few days after she came home, she became so weak, her pulse slow, that I thought she was dying right there, and I held onto her and cried, and she almost laughed and told me it was ok, “we’ll get it sorted.” The next day, her palliative care nurse rang, and miraculously she offered Mum a bed at the local hospice, Katharine House. There, they could assess her properly, tweak her drugs, and make her more comfortable. It was only after she went to the hospice that I really accepted that she was dying, and soon.

We were lucky in so many ways. Katharine House is a great hospice, and it was almost empty when she was there, so she got a lot of attention (the nurses seemed absolutely up to the task of being sweet and caring even if it had been busier, but it’s undoubtably easier to do that when there are fewer patients). The food was good. Most importantly, the doctor in charge of her care there was a brilliant palliative care doctor, Rachel Clarke, whose writing was beloved by Mum. Not long after Mum arrived at the hospice, Dr. Clarke came and talked to her for hours. I don’t know exactly what they talked about, but I know it helped Mum beyond measure.

Covid made it impossible for us to spend as much time as we would have liked with Mum while she was at the hospice (that amount of time being “all our time”), and we had to take it in turns to visit each day. On the first day that it was my turn, I arrived at the hospice to find her much more comfortable and happy, on a better combination and dose of morphine and anxiety drugs. She wasn’t in pain or struggling to breathe, but she seemed slower—not intellectually at all, but everything just took her more time. She was wheeled out onto the little patio outside her room, and we sat there and drank iced apple juice that the staff brought to us. I took a photo, because these little glasses of children’s juice, and the staff’s kindness in bringing me one too, meant so much to me.

I had written out a little paragraph of the things I needed her to know before she died. Reading them back now, they feel so completely insufficient to the task of conveying my love for her, although part of the deal with Mum was that it didn’t need conveying; every time we talked it was a little patter of love, like two otters playing on a riverbank. I told her through my tears I would be ok, and we talked about how wonderful my husband is, and how we knew he would look after me. I told her I would move to the West Coast and keep living the brilliant life she had set me up to have, and that I would do that for her, and take strength from knowing that. I’m glad I told her these things, that afternoon in the sun, before it was too late.

From the day she got into hospice, things became much better. When we visited she seemed at peace and happy, even if her sleepy body was increasingly betraying the still-burning fire in her mind. And yet all I wanted was for her to be able to die at home, with us, not alone at the hospice—a lovely environment, to be sure, but not with us. She needed to be with us, and we needed to be with her. It was very hard, her being there; she wasn’t quite awake and functional enough to Whatsapp me very consistently or legibly, though I sent her pictures of what I was doing mostly like normal, just a bit less frequently. I missed her, and I knew it wouldn’t be long before I would miss her forever. She was being slowly withdrawn from my life.

Again, we were so lucky, in part because of circumstance, and in part because of the systems and efforts the hospice and the NHS had in place to get her set up at home—and that they worked. A nurse sent by the NHS came on Easter Sunday to assess what we needed and what would fit in our house. The NHS provided a hospital bed, for free, that was delivered to our house, which we set up in the living room. It was mostly done without too much effort or coordination on our part, except for moving furniture. Most of the time, they called us, not the other way around.

She came home in an ambulance after 10 days in hospice, and was helped into the bed by the paramedics (who were extremely nice), where she spent her final few days. She was closer to dying than I thought she might be; it all happened so fast. That night, I stayed up after she went to sleep and made chocolate ice cream with coffee, in the kitchen with my husband. Mum and I had made the same flavor when I was home last year, and we both loved it. Every now and then I’d creep as quietly as I could to the living room, trying to check on her without waking her up. My brother James came to stay—he got time off work—and her older sister, and they were with us the whole time. Another stroke of luck: None of us had shitty enough jobs that we couldn’t just forget about work for a while.

The next day was the last day that she was really properly awake, though she also slept a lot. She could still talk to us; sometimes what she said didn’t make total sense, but it was still undeniably her, in her voice, her turns of phrase and little jokes. It wasn’t possible for her to eat much but she occasionally had little pieces of fruit, cut up small like she had asked for, and even a smoked salmon roll-up at dinner time. I will never forget her face when I asked her if she wanted some of the posh Marks & Spencer custard we had in the fridge, and then again when I spoon-fed it to her, and she just loved it. She ate a couple spoons of my chocolate ice cream, too. I plugged my phone into the big speakers and played her some of her favorite National songs—Apartment Story, The Geese of Beverly Road, Mr. November.

Every now and then, she would see a photo on the digital frame I had set up on the windowsill, and smile at it, or remark on it. A photo from my wedding day. A photo of her with my brother on the day he graduated from his second Master’s degree, so much pride in her face. Once, she looked at a photo and smiled and said, “What a rich life.” I know she said that for us and not her. Everything she did was for us.

That was the last time we really got to talk to her properly. We took it in turns sitting next to her, holding her hand, the rest of us scattered around the living room reading or staring at the ceiling. (I watched a lot of Arrested Development on my laptop, and thank god for it.) We would tell her things even if she couldn’t hear us or talk back. I told her she was being so brave, and that I loved her. Often, she would open her eyes to see me next to her, and she would smile. I would smile back so genuinely, as if the circumstances weren’t what they were at all, because I was so happy to see her and so happy that she saw me. Then she would close her eyes again and I would lower my head and squeeze her hand, and hope I was sparing her the sight of the second part, the agony. In the weeks after she died, I wondered a lot if I had spared her too much, and somehow made her think I didn’t care as much as I did that she would be gone; I didn’t talk to her about her dying much at all, because I was scared and it felt pointless, and instead focused on smiling at her and being her daughter, her Libby. I’m not so worried about it now, or at least, it doesn’t keep me awake. If I knew, she knew. And she would protect me, so I would protect her.

On a bright Sunday morning, she died. Richard and her sister were with her, though I don’t think she was conscious of anything. Richard came to wake us up, and I went into the living room, and saw her dead body and let out a howl like I got shot, even with all the weeks of preparation, the intense awareness every second I was awake of what was coming. She was gone, and I was alone.

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I wish I could say that the entirety of these last few days of her life were all peaceful love and joy. On the whole, they were; she had a very good death, just years and years too early. (She was 66.) Still, there were also times of pain and confusion, and those mattered a lot. After she died, I told people she died peacefully and quickly, and that’s true; she was sleeping normally until just the last few minutes of her life, when her breathing became more labored, and she died. But the final few days of her life were not without moments of pain—and those moments, and how we dealt with them, mattered too.

The third night she was home, just after Richard had gone to bed to get a couple hours of awful sleep, she began to make pained faces and noises. She shifted around in her bed, clearly uncomfortable, and scratched at her neck. We tried to ask what was wrong, but she couldn’t talk anymore. I had to go wake Richard up. (Everything was especially hard on Richard, because he inevitably had the role of doctor as well as husband, and we needed him to make decisions about medications.) We gave her a Benadryl, thinking maybe the morphine she was on was making her itchy, and managed to get another lorazepam under her tongue too. That seemed to work, and after an hour or so she was back to sleeping peacefully.

The next night, the night before she died, was much harder. Around the same time in the evening, she started to experience the same discomfort, only more intense. She pulled at her clothes, made noises of pain, tried to move in her bed but couldn’t. She kept yanking her oxygen tube out. We tried shifting her up the bed, but it was clearly hurting her. It got worse, and worse, and we couldn’t do anything. We couldn’t get another lorazepam into her mouth. I turned to my brother and Richard and said, this is the worst thing that has ever happened. Richard called the out-of-hours service, and a GP—one Richard had happened to work with for years—came out to our house, after an agonizing hour or so. The GP was able to give her something by injection, and after a while she seemed to relax. And that was it. That was what she needed to make her way, gently and surrounded by love, into death.

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What happens when we die? We can’t know what happens after we die; it’s part of the deal of being human, a deal none of us signed up for, to live life knowing we will die and not knowing if there’s anything afterwards. I wish I could say I believed it was something other than nothing. But we can often have a great deal of control over what happens when you die; the weeks leading up, in the final hours, the final moments, are important, and if we’re lucky, we get to decide what happens in those moments.

We can’t always control those circumstances, of course; some people die suddenly. But most people die after what we often call a ‘decline,’ either short or long. (No one ever seems to die “after a mid-length decline.”) This often happens in hospital, though the percent of people who die in a hospital in the United States has decreased from 48 percent in 2000 to 35 percent in 2018, according to the CDC. A higher proportion people die at home (31 percent) than at the start of the century. This is good, since the vast majority of people say they’d prefer to die at home; it’s certainly what Mum wanted, and it was the only way we could have helped her have the death she did.

But many people in the United States don’t get that. They die in hospital or in crummy nursing homes, after weeks where their families spent more time worrying about getting time off work, or insurance, or who’s taking care of the kids than they did sitting in quiet peace with their dying relative. Or they die in pain, early, because they couldn’t get the treatments they needed. Worst of all, they sometimes die alone, or on the streets. Though these administrative and financial barriers to a good death are more obvious and heinous in America, this is true even for patients on the NHS in the UK, which has been hacked apart by successive neoliberal and austerity-minded governments for decades. (Mum would appreciate me calling it neoliberal; we used to joke about things being neoliberal, like it being hard to get a good cup of tea at a train station, or disappointing nectarines.) Things that are supposed to be guaranteed by the NHS and the basic premise of using the government to care for one another are no longer. Staff are overworked; bits of NHS services are privatized; hospitals are downgraded. We got lucky that most of the services provided for Mum had not yet been ruined (except for her stay in hospital, which was awful).

What my family was able to do for Mum in her final days was ultimately quite simple: We were able to care for her. We could display our love for her, express it in each little comfort we provided her, and ease her passing. We were able to care for her so well because of our privilege (and having a doctor in the house), but also because the NHS helped us do it. Things like being given a room at a hospice, getting a free hospital bed for the house, or having a nurse and a doctor come to our home for free—those are clear examples of how a society can give families more ability to care for their dying relatives. We all love Mum more than anything, and it sure feels to me like she was the most special person who ever lived, but what made her death better than others wasn’t just how much we loved her; it was that our circumstances, and the NHS, helped us turn that love into physical acts of caring.

In those last weeks, everything felt so important, and it was. I told you all those little details I remember, like the fruit and the ice cream, because they were not little details; in those moments, they were everything, each the most important thing that’s ever happened. Everything we can do to make dying better, more full of love and kindness, is important. Every dollar we can spend on this goal is well-spent.

My mum’s death is the worst thing that has ever happened to me. It could have been even worse; for many people, every day, it is. To allow that is evil, as great an evil as death itself. It must be fought, to our dying breaths.