Dying Matters Week

Dying matters. It’s painful. It’s daunting. I don’t want to face it. Nobody does.

As it is Dying Matters Week, let me tell you about the most difficult part of my weekend:

It has been three weeks since we found out that Mum has Progressive Bulbar Palsy. The average life expectancy for someone with PBP is 6 months to 3 years.

That is so hard for us to deal with, and when I think about a future without her, my heart still breaks. I don’t think I will ever heal from it.

The fear of death is ever-present. My grandfather emailed me yesterday, wishing I could tell him how long he has left with his daughter. It can feel like with every day which passes, time is running out. Death is a looming threat getting bigger and bigger every day, and ignoring it won’t work.

We have to confront the reality that there is no cure. By tackling this head-on, it is easier to cope. The looming dark figure becomes smaller, a mere blot on the horizon, and we can appreciate life much more. It is so important to talk about death, which is why I support Dying Matters Week.

This weekend, we decided to stand together as a family, and face death. Death will not defeat us, although one day it will part us. We sat down and began talking about funeral arrangements, and Mum began to draft her will.

I think Mum is seeing death, in part, as a reunion. She was conflicted over burial or cremation, and it’s an almost impossible decision to make. What do you want to happen to your body? Either option seems bleak and horrible. Cremation, for my mum, offers a way of reunion. She has requested that we scatter her ashes in two places – half on the grave of the grandmother she adored, and half on the grave of the daughters she lost. In death, she will return to the family who have already left us.

There are still some questions to answer. Does she want flowers? What does she want for the service? What music does she want? I like Savage Garden’s ‘You Can Still Be Free’ or ‘Glorious’ by Darren Hayes – Mum adores Darren Hayes and we’ve seen him together twice. These songs are beautiful, but I don’t know if that’s what she would want.

These are not easy questions, and they’re not easy conversations. I don’t want to contemplate losing my amazing mum. Together, mum, Hannah, and I are almost a single unit, and we have been especially close over the past five or six years. She will leave a huge hole in our lives, so it’s natural that we don’t want to talk about it. We don’t want to believe it is real.

It is real. We can hope, wish, and pray, but it is real.

In facing it now, we can have these details signed, sealed, and tucked away. After this is sorted, we don’t have to think about these kinds of arrangements again. We truly can enjoy each and every day. We even enjoyed the weekend, despite discussing these plans.

More importantly, when we are grief-stricken, when our hearts are breaking and the world seems to collapse around us, and we don’t want to think about the future, we know exactly what she would have wanted to happen. Her will details a keepsake for each family member, and we know how she wants everyone to remember her. The wheels are in motion. We just have to press play.

Discussing death now will help us cope in the future. This is the kind of planning we have to do.


2 thoughts on “Dying Matters Week

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  1. Hi, I met you today at the course ( I’m the girl in the lift) and in all honesty I was glad I bumped into you today because I was meaning to pull you aside and tell you how much I appreciate you blogging about something so important but I never got the chance. My dad has MS which is similar yet very different to MND ( it’s more to do with the sheaths lining the nerves however rather than the nerves them selves) and my family and I are going through something similar to what you are. The speech.. the movement… the memory… It’s horrible but I too sat with my dad only two weeks ago and helped him draft his will and arrange his fueneral. I haven’t told anyone about my dad or any of my story -you’re the first person and I just wanted to say thank you for making people like me feel like we aren’t alone. If you are ever free i’d love to grab a coffee with you one day. Stay strong


    1. Hi! Thank you so much for you comment, and I’m so sorry to hear about your father. I know how hard it is to look at your parent and see the impact of a wasting disease. It is so cruel. I would love to grab a coffee sometime.


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