Yesterday the singer was already playing when i arrived at the Friday afternoon happy hour. Hard to describe, but folks, half in wheelchairs half semi-mobile, were listening, eating chips and enjoying soft drinks.
The new recreation assistant had clearly won his trust, because my love had traversed doorways and the mysterious elevator to go dancing. He was standing, waiting for the next song and greeted me with extravagant joy “Hey!” and a huge hug. We danced and a couple of times he stopped to touch me with a gentle kiss on the mouth and a nod. “You are the best; you know everything we know,” he said amid the “word salad” babble. I nodded. I did.
But today he was withdrawn, semi-surly, wavering between acknowledging me and the edge of anger. Once or twice I wondered if he might actually hurt me, which reminded me of those years when we lived together at home, and I never knew when to fear.
And so it is. Now for me it is only an hour this way or that at the care home. And, as another visiting relative said today as i fled, i escaped.
But the emotional whiplash continues.
I live a double life, definitely better than those last years when he was at home, but torn. My new/old/reclaimed life goes on apace, as i explore a new world as an almost-widow and a free creative person. But my old love claims me, calls me with all the strings of our shared years. Make no mistake – down under the layers of delerium, past the restrictions of mind loss – my man is there. I know him as i always have, at the core. I smell his solidness, I see his essence, even as he loses me. Off and on.
People ask me how i can write this blog, be so intimate.
There are a couple of answers.
I want my community to share this journey with me. It comforts me to know you are there.
I want to voice what it is really like, for those, the millions and millions affected who cannot write, so medicine and society get a move on dealing with this agony.
I want to pay tribute to my love and our journey together, our journey now pulling us so unwillingly apart.
Most of all, what i write here only captures the slightest part of what is coming down and has passed. I haven’t touched the pain of the family, brothers and sisters, sons and daughters. I am not dealing with the travesty of health care for these demented elders and their exhausted caregivers.
The writer’s block comes because it is too big a task to write about all that. And I am a more and more frail human as i confront the loving face of this epidemic, and recognise the enormous burden of all the pain – war, racism, injustice – in this world.