Monthly Archives: September 2017

People ask.

So hard to tell. It seems names are no longer meaningful – which makes sense since names are basically conceptual (which is why keeping a culture’s language matters so much – the words/names express the way those people conceive reality, a priceless piece of human existence.)

Anyway,  if your grasp on words in general is pretty well non-existent, why would names mean anything? I think concepts are part of the frontal cortex job, and that is, in my love’s sad case, pretty  well… hooped.

Nonetheless there is a happy smile in his eyes as we meet and walk or dance. Sometimes it takes awhile. I walk up to him and he looks, asks “Who are you?” I tell my name but it sparks no recognition except perhaps a fleeting puzzlement.

But as i hold his hand and we walk and “talk,” slowly he relaxes and that happiness shows up. Touch tells him we belong together. That probing kiss follows, and reassures him. He nods and usually says how happy he is.

Today being a good day, we went to the weekly party up in the elevator to the second floor. “Whoa!” he said, “Where are we?”but relaxed when it seemed i knew and it was okay. (If you have lost almost all comprehension, everything, from a loud laugh to a strange colour, is potentially danger.)

He even kissed my hand as we danced, he was so happy, although he had no idea the singer was joking about it. Way too much to even bring into comprehension. The music, the beat, the dance, that’s more than enough to deal with, although he also clearly sang many words to those old pop songs.

Yes he usually knows me, not my name, and wrenchingly, he even usually stammers out eternal love to me. His proud male gift to his female. And he is proud.

He loves to feel my hand and arm, although always fairly concerned about what those things are below at – and being! – my feet. Their connection to me is another lost concept, i guess. Perhaps body and person are disconnected?

Then seated for awhile, he asks, clear as day, “Where’s mum?” and accepts my answer that she is in Denbigh, near where he grew up.

Does he know me?

Yes, as a ghost walker knows his people and binds them to his story, he knows me. Bound by the power of his being, I also know him. We are still together, and it is what it is.

Feeling happy, excited, and apprehensive tonight because tomorrow after 9 days of self-quarantine due to sickness, i’m going to see Don tomorrow. I am looking forward to it with anticipated joy, but a tad of concern.

I’ve been away twice before for as long – for my own holidays. This was unplanned, involuntary, and at a point where his memory of me is so faint one never knows… and almost every time we met he asks who i am.

Nonetheless. He may not know who i am and certainly doesn’t remember anything about our 35 years together, but i’m still hoping for that beautiful smile and his arms around my shoulders. Worst case, my arms around his, because he is too polite to caste off a huggy female! And if i’m lucky he will sniff me politely, and delicately bend down to touch my lips with his, and nod.

But most of all, i need to be near his smell. His scent, no fragrance, just him — smelling solid, safe, sexy, relaxing, fulfilling.

Such a strange intimate thing, primative i guess, but the smell of that man has always signalled home. And it still does.

I think one of the missing pieces in dementia care and love of our people with dementia is awareness of how much of the personality remains intact. I see it all the time in the care ward.

The man now confined to a wheelchair who sings rousingly and determinedly from time to time but greets us females with “darling.” And we all want to kiss him. Seems that’s a basic part of that sweet man.

My man, being felled by a cold and helped to bed by myself and the nurse, one on each arm, raises his head and chortles, “I’ve got all the women.”

His daily vocabulary is pretty much down to 10 or 20 words, and a bunch of catch phrases, but…. there he was, my guy, focussing on one of the main values in his life- the female.

But to tell the truth, focus is not just an alien word but an impossible action.

“I wish we could be together for a thousand years,” he says, a few days later, after he kind of remembers me but not my impossible name, stroking my face when i finally get him into a quiet space. The ward is extremely upset today because a frail lady is in a brody chair strapped in, and doesn’t like it one bit, hollaring Help louder than i would have expected she could. And for a long time.

This kind of thing upsets everyone, staff and patients. I cannot comment on why the restraints, although she did yell, i can’t see. I just don’t know.

I know the facility was cited a few years ago for lack of a fall prevention programme, but i am not easy in my mind about whether strapping people into chairs is the way to go. But my own mother had to be restrained because, totally paralysed on the left, she never could remember that she couldn’t walk. The horror of it all almost overcomes me.

And now again.

Ten minutes later as i think i am getting him settled to supper, which he is eagerly in favour of, he grabs my wrist and starts trying to talk authoritatively about me never leaving. He doesn’t really have enough words to say what he means, and soon shrinks down into muttering, “You are so stupid.” Even as i laugh defensively and bitterly to myself, “well that’s the bottom of the barrel,” the words sting, because this has always been his greatest insult.

And so it goes, day after day, week after week, month after month. And despite changing circumstances, it has been year after year, moving into the second decade.

And i am thinking, this is enormous trauma. It is not just daily confrontation with the hideous loss of mind and the gruelling grinding care, but the continual endless assault on sense, on values, on reason, trashed by those who have no idea how destructive they are….  this so-called life in a Wonderland world, but not so pretty.

We are the survivors – endurers of this endless assault and this, like so many dreadful human experiences, is trauma. Our trauma though, could be helped with massive humanitarian intervention to help us cope, with constant understanding, monitoring, social work or therapists.

Instead we the survivors, like so many in this bitterly inhumane society, are left by the roadside, crippled and grieving and fatally wounded. By a disease not even our own.