Monthly Archives: February 2018

I arrived today just as the staff had finished with a shave and a haircut (he was in a mellow mood — many times he won’t let them near him) and we all gave him lots of praise for looking so spruce. Maybe it should have been the staffs’ praise, but he loved it, preening for effect.

So then we set off looking for a place to sit. The manager has addressed a dysfunction in the cleaning system so that chairs are actually returned promptly to the ward after their frequently-required cleaning. At one point there were only 5 chairs for 17 residents. But now the place is crowded — there are chairs, and maybe right now less folks in wheelchairs — so everyone is sitting in the lounge.

We could always go to his room, although it is locked due to all the mobile residents with busy fingers, but there is only a single narrow bed. I suppose i could bring in a couch….but it would need cleaning all the time. And couches for visiting couples is clearly not part of the Ministry directives or even certification. Too bad, but the system is far to busy trying to make sure everyone is fed and bathed and not whaling on each other.

Anyway, no room for a couple to cuddle, and hence the expedition. No minor matter with an unsure and muttering companion, when you have to go through 3 sets of locked doors — each one an adventure and potentially perilous, and needing supervision as it swings closed, according to himself — to get to the lounge. The lounge is lovely and big with high ceilings, almost unused except for the many concerts, and usually there is an empty couch or a couple of chairs side by side.

Whoa, where is this? he wonders as he sinks happily into our favourite couch.

We sit and hold hands, looking at fingers and sometimes counting them, both of us contented with our few magic moments.

Then he turns to me and says clearly and strongly, “I think we — I mean we two — should die together.”

I was startled, but the idea was no longer as upsetting as it was back in the bad days, when i thought the healthcare system had that in mind!

“We will,” I said, meaning it truthfully but allegorically.

He looked at me. “Today!” he stated authoritatively.

We sat some more and thought. I surreptitiously wiped away a couple of surprising  unwanted tears, but he caught me.

“Are you alright?” he asked tenderly.

“Oh yes.”

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.

Tongue-tied indeed.