Last year I was asked by Jared’s house to put together his end of life care plan, and was initially shocked to be asked to do this when my son is still a young man.

How can I even think about this?  It’s not something I want to do or even give breath to but it has to be done at some stage.

Questions raised asked for best friends, favourite family members and support workers names, burial or cremation, and where would Jared like to die?!

So it then got me thinking…..

I hope that I go to another world (dying sounds so cold and final) before my sons so who will tell them that I have gone? 

How will this be handled?

I would hope that it is handled with dignity, kindness, and lots of thought and care.

However there are some common myths when considering telling a person with learning disabilities that someone in the family has died.

They won’t understand

They don’t experience grief

It would upset them unnecessarily to be told this news

In reality they do experience grief and my son Jack is proof of this.

Jack used to live in another care home and sadly one of the boys he lived with died. The young man was the only boy that Jack would like being around and would often sit on the boys bed to watch him play a game.   The death and what had happened to this young man was discussed in front of Jack (not intentionally) but unfortunately it clearly affected him greatly and I believe was the beginning of his downward spiral of having a mental breakdown.

I believe his way of expressing his grief was to become more anxious, irritable, with challenging behaviour, changes in his sleep pattern and eventually becoming aggressive towards me in particular.  I now feel this was his way of trying to tell me how he was feeling and crying out for help.

So how do we tackle this sensitive subject?

As Jack is non-verbal this will be difficult.

Jared has a good understanding of dying and he has had people in his life who have died during the past few years and I have talked openly with Jared about this.  I have always spoken about there being a better place in the sky where we all go to, including our animals.  Jared will often have a discussion with me where we talk of Nan and Granddad playing cards with Ayrton Senna (his favourite racing driver) and our dogs who have died playing with his sister Alexandra in a beautiful garden where the sun always shines.  If all this sounds cheesy I don’t care as when my time comes if his brother Elliot (who will probably have this task) can say this to him I believe Jared will be sad but will understand I am with everyone that I have loved and lost.

So whoever does get this job, please don’t do the following…..

Mummy has gone for a long sleep and won’t be waking up – I can imagine both Jared and Jack never sleeping again!

I’ve gone to a better place!  Jared and Jack may think I am coming back from ‘this better place’ at some stage!

Keeping everything from Jack may cause another breakdown, but how to tell Jack is the million dollar question?

And…… I still haven’t written Jared’s end of life care plan.

As Buddha says

Understand that you own nothing,

Everything that surrounds you is temporary,

Only the love in your heart will last forever