This day five years ago was the last conversation I had with a husband who knew who I was.
Of course, I didn’t know that it would be.
The anniversaries of these things are perhaps a little weirder this year because the dates and days match up. Today, the calendar date that he last recognised me and we had an interaction that was meaningful to him in some capacity, is also Bank Holiday Monday, as it was when it was happening. So I guess there’s that, though I’m not altogether sure yet what I’m supposed to do with it.
I’m not stuck in the flashbacks of the early deathiversaries and I do not miss them.
But to know it is five years this date and this day has it’s own quiet significance, and also, in a way, doesn’t.
It was a day of a goodbye that I didn’t know I was saying.
I cannot imagine the shock and pain of losing someone to sudden death. Of life being normal until a knock on the door or tone of a phonecall shatters everything in a moment. To not have had the opportunity to say what you might have wanted to. The fight for peace in having to believe that they knew everything that you would have wanted to say already.
I am grateful for the chance to have said those things.
But death to terminal illness isn’t like they show it on the movies.
Watching someone have to say a final goodbye every time they leave a group of people for months and seeing the toll that takes on them, to the point they stop wanting to see people at all.
Wondering whether your goodbye is the last one every time you leave a room.
Realising that when you had your last goodbye, you didn’t really think that was it.
Because you think this time of dying is going to have this gravity to it. That you will know the end is the end, that there will be a sign or that something inside you will give you that gut reaction. That it will be clearer that now is the time to make the changes.
But nobody actually knows. The nurses tell you when you see decline over a week your person has weeks left, and when you see decline over a day, it is more likely only days. And that’s helpful. But weeks and days is still nebulous. How much of life do you stop not knowing how many weeks “weeks” is and the bills still need paying? How much of normality do you keep going and which one do you outsource, the caring for the dying or the caring for the ones who will still be living?
When will a “see you later” become a “goodbye”?
This day five years ago we spent most of the afternoon waiting in the barbers to get the boys’ hair cut, because we hadn’t had time before and they were looking like bush people and who knew when we were going to be able to go if not then. A friend was able to sit with Steve and talk to him about football so that we could leave the house, because we had decided two days previously that he now couldn’t be left alone. I made dinner, supervised homework, did all the things that needed doing, took up strawberries and lollipops which were the only things Steve wanted to eat, helped him to the bathroom, popped children in our bed for a rotating set of bedtime stories as reading out loud was still something he could do without losing words, did the morphine. All much as we had the days previously. If I had know then what I know now, would that day have been different? I probably would have been less bothered by the bush people hair, to be fair. And maybe ordered delivery food.
But while we had signs of daily decline, mainly mobility and mental capacity, while it felt nearer to the end, there wasn’t any indication that it was as imminent as it was. Or if there was, I missed it.
I wasn’t extra kind, extra attentive. I didn’t stop everything and give him my full attention all day. There were no speeches, no last words of enduring love. Life powered on, with three children needing to feel life around them as strongly as they felt the shadow of death.
A whispered goodnight at the 11pm morphine turned out to be goodbye.
When he was asleep at the 3am morphine, I took that as a good sign that he was finally getting some rest without being in pain or discomfort from his body failing and filling up with toxins from the failure causing him to feel even worse. I didn’t know that it was because those toxins were irrevocably affecting his brain and that the next time his eyes opened they would be filled with fear because he would have no idea who he was, who I was, what was going on, and the chance for meaningful goodbye had passed.
Once he was asleep children were ushered in to say a goodbye to someone who in reality was already gone, knowing he wouldn’t be here when they returned home from school. Consciously orchestrating that for your small children is a part of parenting I wasn’t expecting.
Those are but some of the events of today and tomorrow five years ago. I don’t need to recount the finer details or make myself recapture the trauma for posterity. I know what happened. I’m grateful in some ways that he didn’t. An experience I can now almost envisage as a fly on the wall of the bedroom I redecorated as part of reclamation. An experience it now almost seems incomprehensible that I went through.
In the hospice we told him he could go now, although in all honesty, he pretty much already had.
Terminal illness messes with goodbyes.
In some ways we had been saying goodbye to him for weeks. As he stopped being able to do things, remember things, be part of things. As our relationship transitioned from husband and wife to patient and carer. As we did things for the last time without knowing they would be the last time we did them.
In some ways we never said goodbye at all, because he’d lost the ability to hear by the time we knew he was going.
But in theory, five years ago was the day that we said it to a person who understood it. I wonder whether that should feel more than it does, but it’s been five years and perhaps through time, perhaps through the trauma, many of the details of the day have not been consigned to memory. I think that’s OK.
All in all, I guess the next right thing is to remember to make every departure one you can live with. To keep shouting “have a good day I love you” when the teen leaves late for school even knowing it will meet no response. To hug those who still consent to be hugged. To tell people why they matter even if there is surface discomfort.
Because I don’t think I do regret the barbers, even if I might not have been there if I had known five years ago what I know today. I didn’t know. And the boys needed hair cuts. And we lived lives where everything didn’t need saying at the goodbye, because it was said all the time.
Which is a good job really, since I didn’t know when it came, even though we knew it was coming.