Facing up to death and dying - brightness, dark moments and the long shadow .

It is almost eight weeks ago that I went to the kitchen, picked up my phone to see 43 missed calls from Dad and my niece, and learned that Mum was in the ambulance on the way to hospital. Almost eight weeks ago that I threw together the biggest bag of clothes I could find, instinctively knowing I wasn't going to be going home any time soon. 

In the cold light of day it turns out I over-estimated on socks and t-shirts, underestimated on pants, warm clothing and work clothes, as well as how long I was packing for.

I didn't know as I drove west that we would be soon be coming face to face with Mum's terminal cancer diagnosis. We know it is real and we are still learning to accept it and absorb what it means. I am grateful for the kindness, empathy and care of folk as we do so.  

I am writing this blog to share my experience in the hope that it does just a small bit to encourage a more open culture. Death and dying are still taboo, and the silence and stigma that accompanies taboo things has never helped anyone yet. 

Every day we talk, most days we laugh, often we cry, sometimes we shout and we have tried - so far successfully - to navigate our way through the risk of Coronavirus and the stream of visitors. 

There is brightness - the joy of reminiscing, of hearing stories and adventures from Mum, Dad, family and friends. I am making a memory book for Mum and Dad. Reading and compiling people's memories has been magic. I have learned about the relationships they have with friends and family, understood better the depth and quality of those relationships, and learned Mum was pretty feisty when Mum and Dad first starting dating.   

They are the sorts of stories one often hears at funerals after someone is dead. They are exactly the stories we need to talk about when people are still alive. I am excited to give the memory book to them.  

I have read a lot about death and dying. If you are not already familiar with Dr Kathryn Mannix's work I recommend it to you. Death is a natural process. The only thing we can think that is worse than dying is the alternative - living forever which I don't think any of us want, however rubbish or good we are at dealing with death and dying. This is a four minute clip everyone should watch https://www.bbc.co.uk/ideas/videos/dying-is-not-as-bad-as-you-think/p062m0xt     

We are making plans and doing things with short timescales. Number one on our list was meeting Boris (the horse). That is done. We have the family photograph. We have another trip planned next week. And we will make other plans as we go along. We are having conversations and capturing memories as we go. It is quite remarkable how three different people can remember the same situation with enough similarities to know we were there together with my brother Andrew, and enough differences to wonder if it really was the same place at the same time. 

Those are some of the brighter bits. 

On the other side there are the dark moments: when we realise Christmas is too far away to plan just yet. Or a visitor leaves and Mum gets upset in case she won't see them again. Perhaps unsurprisingly that sets us all off.  Or the middle of the night when I hear coughing or talking and I want to check everything is okay. 

Then we have those moments that you don't want to happen, but do so easily. For example where Dad and I are a bit sharp in our responses. This week I got told off for trying to put the washing machine on the wrong cycle (some might just say a different cycle!), I forgot the circumstances, failed to bite my tongue, and we quickly reverted to the child and parent relationship. We ended up in an apologetic heap of tears with the washing machine still beeping at us.  

And there are the times that take my breath away: seeing Dad stare lovingly through watery eyes as Mum sleeps when I took them a morning cup of tea. And then the 'last times' like tomorrow, Dad's birthday. Alongside the joy and laughter there will likely be quiet moments where we lapse into our own worlds for a moment or two, and quietly reflect and absorb both the joy of the moment and the sadness of the reality.

And of course there is the every day that just rolls on. I am back in the home I grew up in under their guidance, and left almost 30 years ago to make my own way in life. Despite their protestations that I cannot put my life on hold, I am clear this is an important part of our life and that it is my choice to move back. I am working full time, and always with one ear on Mum. Is she too hot or too cold, is she asleep or awake, has she eaten and drunk enough, does she need another cushion. Are there any discernible changes yet. Does she need anything?

And of course there is the realisation that no matter how old you are it is your parent's right to embarrass! Mum's latest trick is appearing behind me on a Teams/Zoom call and waving, trying to get in on the conversation. In MHFA England terms that is what we call taking 'My Whole Self' to work. And despite my inner 12 year old wanting to flap my arms and say go away, the adult me is happy to be embarrassed, super proud of Mum, and grateful for the time we have together. 

The long shadow of Mum's death is of course constantly there - I feel my brother's absence keenly and I still remember the pain I felt immediately after Andrew died too acutely to not have that knotty feeling in my tummy. 

I am regularly asked if I am okay. When I respond, yes thanks, I am doing okay, which is slightly different than being okay, but doing okay is more than good enough for me right now. 

Through it all we feel deep love from those around us. I said to Mum a few weeks ago, if love could make her better she would be running the London Marathon on the 4th October. No amount of love can extend her life, but being open about death and dying, and holding that love carefully in our words and actions as we muddle our way through her end stage together will definitely guide us through.