It’s taken a while, but I’ve started to talk about death? 

Don’t get me wrong, I plan to be here for many more years! But, now I’ve finally plucked up the courage to start the conversation, I can’t seem to stop. Its become the next ‘hurdle’ I dearly want to help my son Simon prepare for. Death has become the next flag to fly from my mast.  The next brownie badge for my sleeve. Death is joining a long list of things that I desperately try to ‘fix’, for my lovely son, to ensure he can live a happy, secure and untroubled life.

Simon is 32 years old.  He lives in his own home, with 24/7 Support.  Understanding Simon’s daily wants, or needs is a subtle process. Until we manage to break his code we often take an educated guess at what he understands and what he wants. So, asking Simon to contribute to a conversation about death is not possible.

Over the years I’ve made halting starts to a plan for helping Simon to manage the end of my life and others to manage the end of his own life. Coffee stained, dog-eared documents have been slowly pushed out of sight.

So why have I started to think about death, now? On reflection I think it’s down to realising that:

• Talking about it, when I am fit and well, will result in the best possible outcome for Simon and I hope take pressure off Nic. He won’t have to second guess what Mum would have said, because I’ve said it.
• It’s a natural progression. I’ve been taking steps to secure Simon’s future without me for years.  Contributing to Needs Assessments; finding the right support provider; securing a forever home. All done with the aim of being as assured as possible that when I’m gone he can live the rest of his life as happily as possible. It makes sense that I’m now moving on to the next step. I’m making sure that if he is terminally ill, or when he dies, he is treated like Simon and his needs are understood and met.

How did the conversation start?

• I needed to be with people that I felt with safe with.  I knew I would be upset, but it would be okay.
• Simon’s older brother, Nic, helped me. It was a great feeling to have him by my side, and he gave great balance to the conversation.
• Simon’s Locality Manager, Vikki to Nic and I through a series of questions on End of Life Planning which gave structure to the conversation – she also provided tissues.
• Simon’s Assistant Locality Manager (Kirsty) and Lead Support Worker (Natalie) helped Nic and I to answer the questions. They provided lovely relevant input, demonstrating how much they knew about Simon, and how much they cared about him.

The conversation isn’t over – what’s next?

We have produced Simon’s End of Life Plan. We will review the plan every year to make sure it’s still relevant and update it if things change. Next we need to starting planning for my death.  How do we explain it to Simon? Who should explain it? What does he need to know? How should I be replaced, not as a mother but as a Finance and Property Deputy.

The more I talk about Death and managing its impact on people with Learning Difficulties, the more I learn could be done better.

I’ll use what I learn to help Simon, but I’d also like to help other families deal with this sensitive area because I do believe that in the end it will enable us all to live the rest of our lives in peace, knowing that we have done everything we can to protect our family members when, we are gone.