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Facing into dying - feeling the sadness and the joy


It is over three months since Mum's diagnosis of late stage cancer. Three months since our lives changed and we started adapting to a new version of reality.



Simon Blake OBE,

CEO

Mental Health First Aid England



The words have perhaps not quite yet sunk in, but whether they have sunk in or not, the truth is there in our day to day lives. Mum is dying and the best clinical prediction at the time of diagnosis is that she had 'months rather than years' to live.


Three of those months gone already.


As Doctor Kathryn Mannix says in this brilliant short video https://www.bbc.co.uk/ideas/videos/dying-is-not-as-bad-as-you-think/p062m0xt 'we have stopped talking about dying and that is in fact a problem'.


That is why I am writing this blog. We have to talk about death and dying so we can take better care of the dying person, help them prepare for their death and ensure their wishes are heard and taken care of; so we can take better care of each other through the process of a loved one dying and prepare ourselves better for death and the grief that comes with bereavement.


Mum's health has deteriorated. Her energy, her appetite, her physical reaction to food and she hasn't wanted to or been able to leave the house for a month now. As I wrote that sentence I realised with a jolt in my stomach what a big shift that is in a month. As we live the changes they seem to happen much more slowly.


Dad and I have settled into a much more steady rhythm in supporting Mum. I for the most part have learned the things that Dad feels are his responsibilities as her partner, and the things they both want me to do.


But the purpose of this blog is to share truths, not gloss it. That has been and is still hard.

I have to work hard to understand why he is behaving in certain ways, and not just respond to the behaviour. I have learned that when he sometimes tries to waken Mum, it isn't because he wants to wake her, but because he wants to be sure she isn't dead.


When he is fussing about whether she has eaten enough it is because he believes good food will keep her alive. And when he is asking her if she wants the jelly later when she is being sick, it is because he doesn't want to eat it all if she will want some because sharing is caring. (Yes he did ask Mum if she would want some jelly later when she was literally mid sick. I didn't bite my tongue in that moment!)


And at times I have had to remind Dad that some things are just easier for me to do because I am 30 years younger, in the same way that 30 years ago some things were easier for him to do than - and for - me.


This week Mum was tired when the palliative care nurse came. Conscious we had been with Mum throughout previous visits. Mum was often looking to Dad and I to answer the questions so I wanted her to have some time on her own with the Nurse.


I suggested we left them together. Dad thinking Mum wouldn't speak, me pretty sure she would within seconds. 45 minutes later Dad and I were sat looking at each other in the kitchen. I am glad Mum had the time alone. It was difficult to introduce the idea the first time because Mum was worried of being alone and Dad was worried that both she wouldn't talk and he might miss something important.Turns out we did miss some stuff when the new prescription arrived and none of us knew why! It is now accepted that Mum must have time on her own and we then need a briefing from the nurse on the stuff that is relevant to us and she wants shared.


I gave them the memory book. We called it a 'little book of love' and it was magic. I learned from that we cannot wait until people are dead to say how great they were, or are dying to tell them how great they are. Memories bring such joy. Yes, this type of thing takes time and effort and we have become used to buying things at the click of a button. As Christmas approaches, if you are celebrating, and wondering what on earth to buy, try this or an adaptation of it - ask a group of friends and family to write 100 words with their favourite memory of the person you are making a little book for. It brings joy to everyone - the people who contribute, the book maker and the receiver. I learned about Mum and Dad - and was reminded of happy times - from doing this.


As a child Mum used to rub my forehead gently if I was sad. Now as she is being physically sick or upset I will sit and rub her hand and arm with the same gentleness. As I do I am pinning memories and songs to those moments, so I can remember this gentle time with joy.

Sometimes people underestimate kindness. I am not one of those but if I was, this period would make me change my mind. I am 100% sure the love and care Mum is getting is because she touched so many lives in deep and different, extraordinarily ordinary ways.

This week alone Mum has had a batch of home made dinners delivered, flowers from one of my school friends, cards from my Uni friends, flowers from her godson, followed by her favourite chocolate from same godson, flowers from her granddaughter, homemade cakes from her great grandchildren, a feather dusting brush from the next door neighbour (so Mum can point out any cobwebs she spots from her chair and instruct me to sort them), and a homemade cottage pie from a life time friend because they had talked about cottage pie on the phone. Each and every act of kindness bringing a smile, a conversation, a memory and of course making a new memory.


We finally found a copy of the Greatest Showmen on a DVD old enough to be compatible with their DVD player. We smiled and laughed and talked our way through as we remembered our first trip to a London theatre to see Barnum. This was our first trip to London together as a family when I was 8 years old. That conversation of course took us to remember our last trip together with my brother to collect my OBE about thirty years later.


Since Andrew died I have worried about this moment - about being able to support my folks well enough through their old age and carry on working and living in London. Through a horrible set of circumstances - a global pandemic - that has been easier than I expected so far and I am able to work from Cornwall. Zoom and Teams knows no boundaries.


That same pandemic has brought different challenges particularly during lock down. The hardest so far being funeral planning. Planning the funeral itself was a beautiful thing. I would never have guessed the hymn, the songs, the reading and her approach to the religious part of a funeral. The tough bit was the very strong potential for numbers to be restricted.

After 75 years of living well a good ending feels like a necessity. We may not be able to do that in traditional ways, but we will find a way. Of that I am determined.


We didn't get the privilege of writing the final chapter with my brother. His death was too quick and unexpected. Having the chance with Mum is a privilege I don't want to waste. Sometimes it is tough but we there are so many moments that are moments. Let me leave you with one.

This week Dad offered Mum his hand to help her to her chair. She pulled what we lovingly call a 'Blake face' (a scowl that has been passed through at least four generations of Blake family) and said she could manage. As her eyes rolled and her legs wobbled she smiled to herself, grabbed Dad's hand and said 'my legs are as steady as a 2 year olds, I shall run like one'.

The joy of that moment - the smile on her face, Dad's laughter and the warmth in my heart will stay with me forever. It epitimises the sadness and joy and I wouldn't exchange this time with my folks for anything.

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