And unless you have experienced it, no one understands…

It was a Monday, but this story really starts on the Sunday.  

Mum had been in the hospice for nearly a week and her decline since entering had been rapid.  Really rapid.  This Sunday we had organised for her Minister to come and serve her communion after Church, but one look at her when I arrived at the hospice told me there was no way this was going to happen.  She was unresponsive, her skin was ashen and grey, her palms were a little sweaty, her breathing was very shallow and there were long gaps between her breaths.  There was also a smell that was coming from her slightly open mouth – I can’t describe it, but I know I will never forget it.  The day before she had been quite distressed and agitated, so to see her so sedate was in one way, comforting.  But in other ways, I knew end was approaching.

When you see someone precious in your world like this, your heart breaks.  Your world starts to close in a little and part of you just wants to create a cocoon in which you can live with things as they were, with your loved one still vibrant and very much alive.  But as with the cocoon, it contains a process of transformation, so too, was this.

My once incredibly strong, independent and yes, sometimes domineering Mum had become someone almost unrecognisable.  The resistance in her to stave off this disease that had ravaged her body was now well and truly gone.  She had done what she wanted – to meet her first great grandchild, even though he had to come a month early so that it could happen.  And now just over a week later, the picture of my Mum, the woman who had always been such a powerful force in my life, had truly changed.

But this is not the bit that no one tells you about.  That was still to come.  To a certain degree, you can prepare for watching the physicality of your loved one declining; while the sadness of the experience is heartbreaking, there is an expectation of it.

Loved ones had flown in from interstate as we knew Mum’s remaining time was coming to a close.  Her best friends came in and visited, saying their final goodbyes, not expecting to see her in this life again.  A friendship that had spanned over 50 years.  These truly are the moments when you get absolute clarity about the truly important things in this world…and none of them are things, they are all experiences and relationships.

We had gotten very close with one of the nurses at the hospice and his tenderness, gentleness, humour and loving care of Mum and us was spectacular.  You know how some people just connect deeply and instantly with your soul?  This Earth Angel was one of those special people.  When he finished his shift that afternoon we had a conversation about when he was next working…not until the Tuesday.  Neither of us expected to see each other again, so we said our goodbyes.

Mum’s condition that day didn’t really change, so we left the hospice fully expecting to get a phone call that night to return for the final time.

But that call did not come – well, not that night.

I returned the next morning fully expecting to see Mum in essentially the same state as she had been the previous day.  I was prepared for that.  I was prepared for walking into her room and seeing her just lying peacefully.  I was prepared for just sitting with her, being present, being there and just quietly holding her in much love.

I wasn’t prepared for what happened.

I walked into Mum’s room, it was before 9am.  I could not have been more stunned.  Mum was sitting up in bed, eating breakfast and her first words to me were “Where have you been?  I have been waiting for you.  The nurses want to wash me & there’s no clean nighties.  What took you so long?”  And she wasn’t happy.  This was not a joking where have you been, this was a ‘I was in trouble with my Mum’ where have you been.  Holy shite!!

Nothing can prepare you for this sort of change.  No one tells you about this and unless you have experienced it, no one understands.  You prepare yourself that the end is nigh, that you will get the phone call to come as death is close or that they have actually died.  You steel yourself a little against the sadness and the heart break so that you can still operate and do what needs to be done.  On every level – physical, mental, emotional and spiritual, you are prepared for the decline, for the physical withdrawing of your precious loved one.  And then the picture with which you are presented is the complete opposite.

This experience is known as rallying and it’s not uncommon in the final weeks and days. I knew of the experience, but my understanding was that it was just a process of being a little better than what they had previously been.  Nothing close to what had happened with my Mum.  Mum’s was certainly not the normal manifestation of the experience.  She hadn’t eaten since early Saturday and now she was sitting up in bed, thoroughly enjoying her porridge and holding court.  I had her nighties with me, so I popped them in her drawer.

I had to get out of her room, I had to be able to just be in a space where I could be on my own for a moment or two, so I went to the loo.  And there I cried my heart out.  I think I was in some sort of shock at not just the contrast, but also being in trouble with my Mum.  No matter how old we are, we still want that parental approval and it was even more important to me to ensure that things were done in this end stage of Mum’s life in the way that she wanted them.  The time would come all too soon when there would be nothing more that I could do for her.  But how do I deal with her being so vastly different from how she had been the previous day?

I was feeling hurt, I was feeling angry, I was feeling sad & I was feeling stunned…and then I was feeling guilty that, in that moment, I could not enjoy that we were clearly going to have a bit longer with Mum.  This is what no one tells you about and unless you have experienced it, no one understands.  The stark contrast in experiences you will have when sharing the end journey of someone precious.  The ability of your parent to have you feeling like a tiny little child again.  The guilt because of all that you feel as opposed to how you think you are meant to feel.  It wasn’t that I wished her dead, it was that I had no concept that she could be anything other than on the edge of death after what she had been like the previous day.

What I know now is that there is no normal when it comes to someone’s end journey – either from the perspective of their physical, mental, emotional and spiritual experience or from yours.  And every single emotion is OK.  This is a wholly singular experience, even when shared with other loved ones because every single person has a different relationship with different dynamics.  There are many precious gifts from sharing a loved one’s end journey – the knowingness in itself is the most powerful gift with the opportunities for healing and creating memories to treasure that it provides.  And I had so many of those with my Mum.  These are the experiences you hear about.  

I share my journey to help you to have an understanding of what may cross your path when you share a loved one’s end journey.  It’s not all beer and skittles, but this is the nature of our human experience – to experience all that we call positive and negative; to feel in the depths our being our connection to each other.  This is what creates the fabric of our existence.

If you need some support, I do work with loved ones as well as those on their end journey.  Just send me a message.

With love, peace & blessings to you, Sharon