I watched Brock go through different stages. Here’s what to expect.
They told us my husband’s cancer was terminal: He had months to live. Maybe as long as a year. From that moment in the doctor’s office, we waited for death.
One day, Brock napped for an extra hour. Was this the end?
He woke up with a cough. Was this it?
With both of us in our late thirties, we had never witnessed death up close. On television, we watched Steve Jobs and Jack Layton (a Canadian politician) become skeletal as their cancers progressed.
“Will that happen to me?” Brock asked. We didn’t know. I patted his healthy tummy, assuring us both we weren’t in that final stretch, yet.
The isolation & uncertainty of caregiving
I read the books, found a spouses’ support group, and was matched with a hospice counsellor. We met with Brock’s palliative care doctor and chatted with the home care nurses. We were surrounded by supportive experts.
And yet, I felt very alone.
In that final year, Brock slept or was sleepy much of the time. Eventually, he was not capable of making decisions. It was up to me to decide when to call for help, and when to let a new symptom play out. If it was after clinic hours, I had to figure out whether our questions and concerns justified calling an after-hours emergency line, or even texting our doctors’ home numbers.
One evening, after many months of this anxiety and uncertainty, Brock was suddenly unable to swallow or communicate. It was 11:30 p.m.
First thing the next morning, I texted an update to our palliative care doctor and she told me this was the end. After living with stage four kidney cancer for three years, my husband was dying. Of all the emotions I could feel at hearing this, I felt relief. I was relieved because, while this was the moment we’d feared and dreaded, at least we knew what was happening. Finally, there was certainty.
There are books, hospice resources, and palliative care pamphlets that describe the common stages of death. Here is our own experience with those stages, shared with the hope that hearing our story will alleviate your own anxieties when caring for a loved one in their final year/months/weeks/days.
What dying looks like … months before the end
During our final year of Brock’s life, I joined a Facebook group for caregivers, and someone posted a photo of her husband in the afternoon: asleep on his side in bed, in a dark bedroom.
I looked up from my chair in our darkened bedroom at my own view: my husband was asleep in bed. Other group members posted their own identical photos. This was when I realized how similar our experiences were: like pregnancy and childbirth, death is a common experience. There is a predictability to how we die.
The earliest sign that Brock had cancer was his afternoon naps. My energetic, entrepreneurial husband never napped. This need to rest and sleep increased over the three years he was sick, and in that final year he spent more and more time in bed.
How to support this stage
To make Brock’s life easier, I sourced a fancy hospital bed that let him raise the back, legs, and feet with a remote control. (Our preschooler loved this bed.) When Brock found the plastic-lined mattress too hot, I bought a cooling pillow-top mattress. I bought extra sheets and changed the bed daily, whenever he went to the washroom or sat in the living room.
In addition to these fancy beds, the Canadian Red Cross and other agencies loan out easy-rise chairs, bath benches, commodes, toilet seat risers, and much more.
To protect Brock’s limited energy reserves, I became his gatekeeper: when family or friends visited, I set a timer and asked them to keep their visits to the half-hour limit (a limit Brock set with me beforehand). When we visited family, I explained he might need to close his eyes mid-conversation, to rest. As Brock got weaker and less able to advocate for his own needs, I became his tough guardian.
Somedays, Brock didn’t want to eat anything, while other times he craved the same foods day after day. He went through phases where all he wanted to eat was Spitz sesame seeds and apple juice, then chicken burgers from the pub, then chocolate sauce cake with whole cream poured on top. I enabled him, shopping and ordering takeout and baking whatever he felt like, at any time of the day. And if he didn’t want to eat anything, I didn’t force him.
What dying looks like … one month before the end
When we get close to death, that line between being awake (conscious) and being asleep (unconscious/subconscious) starts to break down. A common metaphor is having a foot in both worlds at the same time.
Seeing ghosts
Brock and I weren’t spiritual people, so it surprised me when he told me he was seeing faces. He saw them around the room, in the patterns of the dresser’s wood, and so on. He didn’t recognize these faces. While seeing a mysterious face sounds scary, they didn’t make Brock feel anxious. He knew it was a weird thing to see, and was embarrassed to tell me about it, in case I’d judge him.
I am not a neuroscientist, yet I interpret these hallucinations to be an example of how our brains play a role in the dying process; those synapses misfire and start shutting down, leading us to misinterpret our sensory input.
Psychologically, our brains assure us: “Yes, death is scary, but look at all these people around you, keeping you company.” I think this explains why some people close to death see their loved ones at their bedsides, or ghosts.
Fragmentation of the self
Brock also started to feel like he was (sometimes) three people. For example, he said he knew he’d have a good sleep if all three of him were ready to go to bed. If one or two of him were missing, he’d have a hard time falling asleep or wouldn’t sleep well.
I once brought him a glass of chocolate milk, because he’d asked for it, and he said: “Phew. I can drink that. I thought I’d have to drink all three glasses.”
Or when he made a physically strenuous journey to the washroom, with help from me and a nurse, and he said: “Oh, that wasn’t as hard as I expected. I didn’t have to do it three times.”
Brock and I brainstormed where his three people came from. The father, the son, and the holy ghost. Ego, superego, and id. Given Brock’s experience, maybe there’s a reason that a lot of cultural patterns occur in threes.
Here are some of the things Brock said during that half-conscious, half-unconscious stage:
“I was about to offer you whatever I was eating in my head.”
“I think we’re done with the bread, if you want to put that away. And, as I’m saying this, I’m realizing there is no bread.” (Said while I gave Brock a back massage.)
“Is that the smallest letter?”
How to support this stage
When someone sees something that (to you) isn’t there, it’s tempting to argue. But I wanted Brock to share his experience with me, and so I accepted everything he said. I listened without comment, without joking or questioning the validity of what he was seeing, thinking, and saying.
When Brock would see or share something especially weird, I resisted gossiping about it with other people, or being silly. Instead, I wrote it down.
(Brief tangent here: I wrote these funny quotes and stories down, thinking that I would share them with Brock when he was better. Some day, I thought, we will laugh together about how funny he’s being. That’s how powerful denial is: I was watching my husband die, and yet some part of my monkey brain thought there would come a time when he’d be back to normal.)
What dying looks like … weeks before the end
A familiar theme among the dying is travel. My theory is that some part of our brain understands we’re about to undertake a significant departure or change (i.e. death). In order to break that reality down so we can psychologically grasp and accept the idea without freaking out or getting depressed, our brain tells us to expect travel.
I asked Brock once if he was scared of dying, and he said no. Again, I thank the miraculous human brain for easing his passage here. He was slowing down in every way — mentally, physically… He was very tired and weak by the end, and the idea of permanent rest wasn’t scary.
How to support this stage
Half asleep on the toilet one day, Brock asked: “Where’s the car parked?” I assured him the car was parked nearby, and I knew where it was.
At this stage, it’s all about reassurances, listening, and keeping our loved one calm.
A rare time Brock became agitated was when he couldn’t understand which medication to take. Nothing had changed, I marked the containers as usual. He asked me again and again to explain the doses to him, and suggested we write down the (very simple) steps.
I had to stay patient, assure him I would just give him what he needed, and take that level of decision-making away from him. While his physical decline was obvious, I hadn’t realized until this point that his cognitive ability was also disintegrating.
What dying looks like … when we shift from living to dying
Three years after his diagnosis, following a year of extreme weight loss and declining energy and strength, I woke Brock up to take a pill and he wasn’t able to swallow it.
He was foggy and not really conscious, although he was able to move around.
That night, he would not stay still; he kept sitting up and trying to stand, as if he had somewhere else to be.
At first, that uncertainty I’d felt over the year returned. Did he need the toilet? Was he more comfortable upright? Should I help him get to wherever he was going?
It wasn’t until the morning, after a difficult night of constantly easing Brock back onto our bed, that I learned about this stage.
Restlessness, wandering… It’s a normal stage in the dying process that they watch for in hospices and care facilities, because if someone gets up and starts walking in the middle of the night they can fall and injure themselves.
I think it’s a continuation of that “travel” calling. The dying person knows their journey is about to start, so they get out of bed and start walking.
How to support this stage
When we expect this stage, we can have an injection ready that will calm the dying person, and keep them safely in bed. (We did not have this injection.)
Similarly, one of Brock’s painkiller medications was in oral-only form; we should have had an injection form on hand, for when he was no longer able to swallow. It bothers me to think he was in pain for that one night without his top-up painkillers.
What dying looks like … at the end
Over four days, Brock gradually slipped away from us. The word is “comatose” — he couldn’t control his body anymore, including his eyes, which stayed half-open and glazed. That first morning, he could grunt and gesture enough to tell us he was extremely thirsty, but since he couldn’t swallow anymore we could only wet his mouth with a sponge.
Our friends and family arrived, camping out in the living room to work, or making food in the kitchen, in between visits with Brock. We spoke to him, watched his favorite movie together (Lord of the Rings: The Two Towers) and listened to his Spotify playlist.
We adjusted his position in our bed every hour, taking care not to lie him on the tumor-y side. We sponged his mouth, changed the moisture-absorbing sheet under him as he sweated, cleaned him up when his body purged his bladder and bowels, and dosed him with painkillers religiously.
His body became hot in some places and ice cold a few inches away as his circulation slowed.
I laid beside him and felt like he was trying to tell me something. It was frustrating not being able to communicate.
How to support this stage
Brock’s mom, a nurse, assured us he could still hear us. We tried not to talk about him; instead, we spoke to him.
I reached out to all the important people in his life. Many were able to come and say goodbye. When his best friend entered the room, Brock suddenly shouted “Johnny!” When another close friend (who had ordered a Tesla) phoned from New York, Brock yelled: “I want to drive a Tesla!”
I’d done enough reading to know the things I should say to my husband at this point:
- Explain what was happening.
- Assure him he was still in control.
- Give him permission to die (I had to lie).
Over and over, I said: “This is what’s happening: This is the end of your life. We love you and are doing our best to keep you comfortable. I’m really sorry if we aren’t doing it right. Your job is to let go when you’re ready.”
On the fourth day, at a rare moment when his parents, brother, and I were all with him in the bedroom, he died.
Death is a natural process
I believe that death is a right: We should be able to end our life before our natural time, if we choose. “Medical assistance in dying” is legal in Canada, as it should be.
At the same time, witnessing Brock’s death made me realize that death is a natural process; just like pregnancy and childbirth, our bodies and brains (usually) know what to do. When we trust this process, monitor it, and work with it, death can be a peaceful, loving experience.
(To be clear: Sometimes these natural processes need medical support. I had preeclampsia and an emergency C-section; Brock needed hefty doses of fentanyl and morphine, plus an oxygen tank.)
Understanding death lets us enjoy the life we have left
It’s terrible that my husband died at age 38. We love and miss him every day. I have no regrets about those final years together, about our choices, or how we were able to support him. We gave him the best death we could.
If you find yourself loving or caring for someone nearing the end of their life, I hope our story and knowing what to expect will allow you to enjoy the time you have together in those final years, months, weeks, or days.
[This story was first published on Medium.com by Human Parts on November 4, 2020.]