Downs With Ups

I was recently at the funeral as a support for one of my closest friends, for sadly her mother passed away.  As I reflect on that day’s events, I realise how significantly different my circumstances are.  It would seem I need to plan my own death, starting now.

(I’m now at an age when this has become quite a regular occurrence, having now several friends who’ve recently lost their mums and dads.  Both my parents are fortunately still alive and I made a mental note as I drove home from the wake, to congratulate them both on being so healthy and active in their advanced years.)

In typical tradition, there were three parts to the funeral:  the first was the lengthy mass at a church; the second was a brief, but overwhelming service at the cemetery, and the third was a wake, where we all solemnly took part in a meal.

I was busy comforting my friend at the cemetery and talking to other mourners at the wake, so it was during the church service that I had the opportunity to reflect on my own circumstances.  I couldn’t help but think about my own parent’s funerals and their mortality, as morbid as this sounds.

Then I started to think about my own death and wondered who would help Poppet when this happens, (for some reason I believe I will be her last surviving parent).  As I looked at the grieving family, consisting of my friend, her husband and son, my heart filled with compassion, but I also wondered who would be sitting with Poppet at my funeral.

As a person with an intellectual disability and as an only child, Poppet is going to need a lot of support, not just in the practical sense, but also emotionally.  Someone will be needed to either help her organise the funeral or arrange it independently.  Someone will need to be with her, not only at the time of my funeral, but beyond that, maybe weeks and months and on special occasions, such as birthdays and anniversaries.  Who will do this?

What if I became diseased with something like Alzheimer’s and my demise was slow?  Who would bring Poppet to visit me?  Who would explain to her what was happening?  Who would make sure she looked after herself throughout her grief?  Who would help her to express that sadness?  This would be something that would be extremely challenging, given communication isn’t a strong point for people with intellectual disabilities, even though their feelings are real.

Although she was weighed down with grief, my friend was able to organise her mother’s funeral and she will be able to manage her mum’s estate.  This isn’t something my daughter will be able to do for me, not that I see that as a fault.  It’s just the way it is.  I need to plan for and take care of these things as much as I can now, so that she will not be left with the unachievable burden of dealing with my death.

As I sat in the wooden pew at the church planning my own funeral, I realised I was assuming that I’ll outlive my daughter.  There is every chance that this may happen, given that people with Down syndrome have a life expectancy of around 55 years.  Ah, as if planning my own death now isn’t tough enough.

“Mummy,” I hear from down the hall.  “What’s for dinner?”

There’s my cue to go and start preparing a meal for my family and stop all this ‘What If’ing’.  There’s nothing like cooking to place me firmly in the present, and over dinner, we’ll raise another glass to Martina.