Tonight I relived an easily forgotten part of being the constant companion to a loved one with a terminal prognosis. I read words from a tormented soul trying to do the best under extraordinary circumstances. The raw confusion of someone intent on providing joy in a moment tainted by omnipresent doom.
They went to a concert. They were happy, enjoying life. But he couldn’t keep it up. He wanted, and needed, to go. But more than that, he wanted her to stay and enjoy the night. To live the moment he could not face.
And this was the quandry I read, between the lines, of the clipped, succinct barrage of text messages between a carer, partner, lover…and her confidant friend.
It brought back, with full force, the numerous times I had when Renee tried to brave a social life yet found her failing body unwilling.
She would urge me to stay. Plead with me to let her go and “just enjoy yourself”. Which as you’d expect most unselfish people would do, I would totally ignore and dutifully head home too.
And I could never understand why she would get pissed off with me for doing so. Bloody hell, was being chivalrous and unselfish such a crime?? What they hell do you want from me??
Well there it is – a self absorbed reaction to a situation not about me in the first place. Not completely obvious, but in hindsight, plain as day…
You see Renee, like the vast majority of people afflicted with a condition that results in a reliance on others to go about daily life, was mortified that her predicament would or could affect the lives of those she cared for.
She was pissed off that her illness was stopping me from being, or doing things that made me, happy.
Bloody hell. And I thought I was being thoughtful!
We naturally had many, many… Um… Discussions? about this very topic. And we never came to an agreement as such, more of a peace.
I finally came to realise that through her acceptance of what was to eventuate, Renee most desired to see those she loved and cared for happy. Doing and living their best lives. Not to be broken down by her predicament, but to be encouraged to make every moment count as if it were their last.
So when I read these texts tonight, my heart broke. I cried. I wanted to reach out to both of them and say what was. But there is only so much that words, particularly from a third party, will help.
This is one of those bizarrely horrible realities of living such an off hook life. There are, more often than not, no answers. No reasons. No end goals. Just compromise, discussion and honesty. And moments.
And love. The most crucial of all.
But only one thing is constant, and inevitably it is the only thing that matters…
So enjoy it. ✌️
Hard to read, this one. Early in my wife’s sickness, she was so focused on us, and me, making sure we were going to be ok, even to the point of trying to initiate conversations about me “moving on”, and not staying alone after she’d gone. Of course I never finished these conversation topics, it was too hard, but that was all she thought about, was making sure we were going to be ok. Later on, she wanted me to go out, socialise etc, but I didn’t want to leave her alone. Our women are amazing ❤️😭
Sounds very similar to my experience John – Renee just wanted to know that I / the kids would be happy.