Monthly Archives: October 2016

Just in case anyone of you, dear readers, got the mistaken impression that all is now love, hugs, and roses, i feel i should clarify. In large part for that someone like the  less experienced me for whom i really write, trying to tell what is coming down in the future for we who love people with this soul-destroying disease.

The next three days i went to see my love he was completely out of it. Babbling, hallucinating, afraid “of everything,”not sure of who i was except he felt i was safety, beloved and beautiful.

Not sure he would have even recognised music if it was played. Words meant nothing to him although at one point he asked, “Have you seen my tire?”

“Tire?”It slipped out before I grabbed the question back. Quickly recovered, “oh, the car?”

“Yes of course.” This conversation was already longer than his attention span and no longer important.

“Oh it’s in the parking lot, the brake is on and it’s all locked up.”

He nods approvingly and points at the little children running around, who only he can see.

“So where’s that other one who is supposed to be here? D…d…delores?”

“Right here. I’m Delores.”

“My wife.”

“I’m your wife.”

He looks bored and wanders off on his endless rounds. He appears to feel all the women with long dark hair (unlike my grey) are Delores. Guess that’s ok with me. Lightens the load.

The care aide who jokes and dances with him walks in and Don breaks into a huge adoring smile. And wanders off again.

“I get tired.”

“Yes you must get tired.”

“Oh how will they get here?”

By now i too am exhausted and emotionally paralysed. I hastily leave.

I was late getting to the care home for the Friday afternoon party and a friend tells me my love has been dancing for an hour non-stop. And there he is, somewhat oddly attired to the outside eye i suppose, and gaunt, determinedly stepping, stepping, lost in a world that makes sense. Music plays, you dance.

And i join him with joy that there is still this place we can meet. In the hallways, people say,  “oh look, it’s the dancers” and my love grins proudly.

This robber disease has still not stolen music. He sings the words to songs i didn’t know he knew, even though his spoken words are mostly a jumble. You just have to wait for a clearing in the fog; then he gets out a phrase or two that makes some kind of sense. Language as an abstract art.

The disease also has not changed the smell and feel of that beloved body, the rightness of a gentle kiss or holding hands. The care with which he awkwardly places his hand under mine so the chair arm does not hurt me and the stealth with which i move so that his holding me does not hurt him. The fit as we stand together, the satisfaction of walking in step.

And it has not stolen our yearning for each other. It was always like that. Where one went, the other followed. I pounded nails and carried firewood, because he was there. He learned to type and wrote fine pieces for our magazine. We worked together, as was the normal case in our farm backgrounds, and found it good.

But now each time we separate, me in relief to go back to a world which may not make great sense but does have time and language and some logic, he sadly turning back to the ward he is now accustomed to, each time we separate, a sense of great wrong overwhelms me.

And yet this separation is the only option to save myself, because so far the disease, my love’s disease, has only chewed off hunks of my soul. It has not swallowed me whole as it once threatened to do.