Updated: Dec 21, 2020
Very soon after I found out Mum was dying a colleague and friend wrote me a letter about their own experience of a parent dying and what they had learned from their experience. I was grateful when I got that letter through the post. So much wisdom. And I read it often.
When children are born we know what to do. When people die we know we have to register the death and have a funeral. As a society we know a bit about grief and bereavement even though we can get much better at talking about it and supporting people through it.
We talk less about the process of dying. There is still, it seems, a worry that if we talk about what is happening we make it happen, which is poppycock of course. If we talk about death and dying we pass on the knowledge, we learn from the person dying and we can gain great comfort which will help us through the grieving process.
I have learned that having conversations about dying do not necessarily get easier, but the more we do it the easier it becomes to have the conversations.
I am deeply grateful to friends and colleagues who have trodden a similar path to the one Mum, Dad and I are walking now and have shared their experiences. It has helped and I have been touched by some of the conversations opened up by writing this blog, and the publication of Sisters and Brothers http://simonablake36.blogspot.com/2020/12/proud-to-launch-sisters-and-brothers.html.
This blog is my contribution to breaking the silence that exists about death; an open note to share our experience in the hope that it may be of use to someone. It also helps me process what is happening. If I can make sense of it in my brain and know which way I am heading - which writing helps me do - then my heart can get there too.
It is four months since we were told Mum had months to live. Four months to write the final chapter, with a close eye on the final page and those two words I don't want to write: The End.
As I lie in bed each night, often squeezing my eyes shut dreaming of sleep, I often think of this from Dickens 'It was the best of times. It was the worst of times. It was the age of wisdom, it was the age of foolishness. It was the epoch of belief, it was the epoch of incredulity.'
If you were to listen in to our home at the moment in any given period you will hear us laughing hard, talking hard, recalling and making sense of the past or trying to work out the future. There are gallons of tears.
Mum is increasingly more tired and sleeping longer. Except on the very odd occasion, she needs support to move from the bedroom to the bathroom to the chair and back again.
Over the last few months Dad and I had gotten into a steady rhythm. We had moved from muddling through on a day to day basis to 'we got this'. Two weeks ago he fell over and broke his femur. On Friday he had his hip replaced and is in hospital waiting to get home.
Now Mum and I are definitely back to muddling through. We have managed 5 days on our own, with the much appreciated help of the neighbours, family and friends.
We have some care coming for Mum today which hasn't been the easiest to organise and feels like a big relief. (The NHS undoubtedly has amazing people in it, but the systems and the lack of communication is another story for another day, it is too difficult to think about, as well as live, that particular bit of the story at the moment)
I have - through experience this week - developed more empathy with Dad's approach to 'pill time'. First night on our own as Mum got up to go to bed, her pills fell from every part of her body. Whoops. Then the morphine squirted past her mouth as she started to tell me a funny story. Whoops again. The next day we mixed up the morning and evening pill boxes. I sheepishly phoned Dad to get his help. I am much more active in the process now. A pill expert, you might say.
Mum is missing Dad terribly. Dad wants to be home. I want him home. Each morning since he has been in hospital the first thing I do is check Mum. I literally hold my breath while I watch quietly - for what seems like forever - to see that she is breathing. That is the moment each day I want Dad back home the most. They are soul mates. This is the time they need to be together.
Along with the laughing and crying we now have a few little 'untruths' each day. On Friday Mum would have told you she hadn't eaten at all. She had. Yesterday she would have told you she hadn't spoken to Dad at all and she didn't know what was happening with his operation. She was literally on the phone to him when our neighbour arrived and proceeded to tell them she hadn't spoken to him!
Those are what we lovingly refer to as the other Margaret moments. Very occasionally it makes sense to gently correct her, but most of the time not. When I choose to do, so she looks at me with her lovely brown eyes and says something along the lines of 'did I enjoy it'. A gentle 'yes Mum' and she smiles contentedly.
Yesterday you would also have seen us carefully writing a note to make peace with an issue that is troubling Mum. You would have seen us talking with complete lucidity about the past and the things she is sad she will miss in the future, as well as eagerly issuing instructions about Christmas.
Last week her grandchildren and great grandchildren came to visit. Loads of laughter and some tears. In a tearful moment, the littlest aged two put his head on her lap and said 'don't worry Grandma, I make you better'. He did make her better with another dollop of love.
Yesterday I was in the car and 'All I want for Christmas' came on the radio. I sang along at the top of my voice thinking, all I want is get Dad home ASAP and to make sure Mum feels safe and loved for the rest of our time together.
Last night a school friend dropped off a stew. Somehow one square of Fry's Peppermint Cream had gone everywhere that afternoon. Of course Mum was wearing white. My friend was coming in to say hello. I asked Mum whether she wanted to change or stay grubby. Without missing a heartbeat she said 'stay grubby'. Who was I to argue?
It really is the best of times and the worst of times, the winter of darkness and the spring of hope.
I feel privileged to have this time. And lucky and grateful that we have so much love and kindness holding us tight every step of the way.
Simon Blake is CEO of Mental Health First Aid England and has been writing his blog as he charts his own mother's battle with terminal cancer.