Monthly Archives: October 2019

Is It You?

For a year or two after my love “went in” to residential care, he was very clear that he know who i was and even, sometimes, why we were not together anymore.

Once he carefully and sternly  announced, “I don’t mind it here. I will stay, so long, so long,” he emphasized, “as you visit every day.”

Of course he had no choice anyway, part of my pain and guilt, but that’s a different story. He was unable to figure out the keypad lock, although once he brightly remarked, “oh so that’s how you do it.” But then the information disappeared because he can’t transfer from short to long term memory. And these days he can’t access long term.memory either.

Soon i tried to visit less often for my own mental heath,  until it became clear that the care was patchy, and my heart had holes.

As time went on, he would look and touch me, and ask, Is that you? Then, reassured, he would laugh and we would kiss and hug, while he tried to figure out where we could spend the night. Under a bush? in the lounge? perhaps camping in the garden? maybe break into the linen room? were some of the alternatives offered.

But personal identities were getting sketchy. The care aides said when he confused them with me they let him, because it made it easier to look after him. They hoped i didn’t mind, and i didn’t.

I remember one day he turned the wrong way and hurried down the hall after a black-haired aide,calling my name in a demanding panic.

He had by then forgotten the names of his wife and his children and all his brothers and sisters, all carefully counted on the fingers every morning, sometimes twice a day, for years and years after diagnosis, his insurance against losing what mattered most. They were who he loved and he did not want to lose them.

And now he has almost lost me. He likes me well enough that I can (usually) bring a joyous smile to his face but my name was lost months ago.

Now he mostly has no idea why this friendly woman comes into his life. He doesn’t know it is every day, because time is also lost. Oh he doesn’t mind, and sometimes still touches my face and tells me i am beautiful.

Yesterday it took a little while for him to focus on me, but when i asked, Can I have a hug? his arms came around me, we kissed.

To my surprise, amid a confusion of words, I heard “stay a hundred years” and i knew it was his old refrain,  the old love spell,  “I wish we could stay together like this for a hundred years.”

And i knew he knew it was me.

 

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So much to process

So the Island Health-appointed administrator had a meeting with families at Comox Valley Seniors Village two days ago. The room.was packed and even more issues emerged. It was quite a meeting!

That was shocking enough but today a few of us met with family members from Nanaimo Seniors Village.

Their story of how people realised what was happening and came together is a bit different from here, and we had a lot of information to exchange.

It has left me stunned, and grieving that I, yes, desperate, left my poor darling in this situation.

I did not know how far below the standards this care was. I grasped it as a lifeline after 12 years living with my love’s dementia. I was on the ropes and thought the sometimes strange, always paltry care was the price he and i had to pay for my inability to look after him any more.

I didn’t know it is not this way everywhere. I didn’t know it is not even what the system sanctions.

It is just too much to process and i will go for walks in the forest and by the ocean before i try to make any sense of it.

And try to forgive myself for my ignorance.

 

 

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Mouthy

Lately my dear puts everything in his mouth. The nurse’s arm, the sensory items one might call toys, the empty glass (a problem if it’s styrofoam), the napkin, my hand. As i let him suck, he turns my hand, examines it, kisses it, and chooses a finger.  I watched bemused until suddenly, he chomps. He may not have many teeth, but yep they are sharp!

When i protested, he was somewhat abashed but mostly bemused and talked a lot, maybe explaining, but i could make no sense.

And so again we probably descend, and so again i must bear the journey.

Meanwhile,  in a great distraction,  the care home and the media are obsessed and upset because the government has assumed temporary control due to health and safety issues.

It is early days for sure, but so far there has been no indication that anyone in the local management levels actually understands the depth of the issues raised in the Medical Health Officer’s report to the Island Health Board.

They seem to think it is just a few trouble-makers, whose loved ones might have had an unfortunate accident, or two, or three. A fall, a sore, an infection, a death. Happens all the time you know, and, oh yes, it does, anywhere: accidents happen, things go sideways, but not over and over. And yes, we all know that no one gets out of Complex Long Term Care alive.

But most of the complaints and serious system failures the government has identified have nothing to do with the so-called trouble-makers. We did not to my knowledge even file more than a fraction of the complaints to Licensing.

This is personally frightening. Things were going awry all over, unknown to us. Thankfully the licensing branch of government got the trail.

One accident might happen, once, but multiple accidents are a system failure. And system failures are a management problem. And an oversight problem. Possibly,  no probably, in part a money issue, but definitely not an odd mishap or two. This is a time when management swings into action to sort things out.

As that happens, I have decided to not move my love to another facility, and to give the process a couple of months to see how it goes. He has friends and staff who know him well, so I want to avoid the upset of moving if at all possible.

Meanwhile a few overworked and underpaid care aides are the front line to stop my poor darling from eating whatever is movable and comes across his path.

Hint: Folks, better check all those soaps and deodorants and other stuff lying around in his room.  We are now in another stage where anything anytime anywhere might go in his mouth.

We have been in that stage for at least a month or two. Parents will find this familiar!

The confusing thing is his somewhat aware reaction when his instinctive motions are interrupted. Not an adult, not a child. Just a fine and much loved human doing his impressive best, with a deadly handicap of dementia.

And very mouthy, just like his chosen woman.

 

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