Overnight?

I get there about 4.30, timed to check out the supper offerings. Lunch the day before was pretty dismal, and i am wondering if the care home is sliding back again, or if they have lost a good cook?

Anyway, when i get in, he is still in bed from his afternoon nap, very comfy, and is confused when I turn on the light and announce supper etc, all, to be sure,  introduced only gently and slowly.

He focuses on me, blinking, and says, “Are you here now?”

“Yes,” i say, “I come every day because I love you.”

I don’t add, because it is way beyond his comprehension or need-to-know, that i have to come, because I don’t trust the care home to look after his more subtle needs.

Yah, real real subtle like, for example, cleaning during outbreaks, or undiagnosed pneumonia– yep i am still deeply pissed and in uber-protective mode.

This defenseless person, my former partner, has aroused all my motherly ferocity. I hate the way I cannot move on with my increasingly short life, but obligations rule, and obligations to innocents rule most.

“So,” he slowly says, breaking my heart, still not sure where or why we are here, “Are you here to stay now?”

“Oh yes,” I lie, sobbing silently deep in my soul, where no one knows, just one more heart-breaking therapeutic fib among so many, “I am here to stay.”

“Overnight?”

Jeez, he has lost so much language, how did he pull that together?

I am stunned but muster another (probably sickly) loving smile and say, “Well, um, no, not All night, i think not.”

He castes an eye around the barren room and the bed he is so comfortably tucked up in, with no room for two, and agrees, Ok.

Eventually a great care aide and I coax him down the threatening hall (which he has clearly never seen before and holds all sorts of dangers he says he would rather not face) we coax him down and into his chair in the eating room.

He devours coffee and cranberry juice, offering me some politely from time to time. But he is just as glad I refuse.

Then as we wait, he starts in on the table, using spoons to saw at the napkin, “Milk,” he pronounces. Then, when my head is turned for a second,  the fork successfully gauges some shreds of napkin.

I grab them before they get to their mouthy destination. Despite confusion, he doesn’t protest, and i remember how he used to say, fondly, when he didn’t understand, “Crazy woman.”

Supper finally arrives, but the aide realises the meat needs to be cut up, and carries it away again. “Hey!” he shouts.

When it comes back, the meat is nicely chopped, but the delicious baked potatoes and the (amazing!) perfectly cooked broccoli and cauliflower are in huge chunks.

As an overloaded spoon heads to his mouth, or the floor, i hastily cut up the rest into manageable chunks.

I can then leave him with a kiss, engrossed in his meal, and humming as he eats.

But the thing is, he can indeed eat this good soft and actually tasty food, but he has no sense of size or how to make the pieces small enough to eat. Or how much fits on a spoon, or in his mouth.

Is it unreasonable to expect a care home to know a resident likes “real,” albeit soft, food, but needs that food cut into spoon size pieces? I would and did do that for him at home 4 years ago, as you would for any young one, which in some ways he now is.

I fear, rather than 2 minutes of staff time to cut the food smaller, the alternative might be the ghastly minced food we just got him off a few months ago.

It is a marvel that he still continues to want to eat. The minced food is not an encouragement.

 

 

 

 

 

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Doll gate

We are walking around and around the ward. He is pleasant enough but shows no signs of recognising me.

My back is hurting and, frankly, i am bored, so i grab a doll off the shelf and hand it to him.

It is wrapped in a nice jumper but its appendages- head, hands, feet , are hard.

“Oh,” he says, “when did we get this?” (ahha he did know we had some connection!)

I gulp and say, oh about a month ago.

“hmmm I didn’t know,” he says with a mix of suspicion and surprise. I’m busted, but he forgets.

Later he works hard to tear the head off, but these items in the dementia ward are built tough. Eventually I intervene, but later he is twisting and twisting at its arm.

“You are hurting it,” i say. He looks, and hesitates, and stops for the entire hour, until i spirit the babe away at supper time.

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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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A change, a choice

It seems my application to transfer my poor confused love to another care home in the Valley is winding its way through the system. About 2 months ago I had asked to move us to The Views and added Glacier View just 2 weeks ago.

I have heard nothing official but it seems Glacier View is looking at his file.

What it means I don’t know. Can they decide they don’t want my sweet? or loud-mouth me? Do they have a bed or or they just preparing? I don’t know how the inner workings of this system go.

I know a decision is pending for us, to go or to stay. Leaving our dear many friends at the care home will be wrenching. For me, for sure and i think for them. But will it hurt him, or will he react to the change with glee as he did at the hospital?

I do not really want to leave where we have settled in, but it is not comfortable physically ( down to not enough furniture in the dementia ward again) or mentally.

I feel compelled to check who is on every shift, and who is off,  because the care is uneven for dementia, even if technically competent. I go every day to see if he is still ok. I am afraid to leave town. Even when he is sleeping, i need to check. This is so unhealthy.

Can Island Health fix this broken system? Oh, Maybe.  Can it fix it in time for my love and me to have a tiny bit more peace and grace in our last days together? Doubful. We probably don’t have that much time on earth unless something dramatic is done.

And so the decision looms, and uncomfortable change may have to be the choice.

And now I wait for the phone call. I think when it comes I will have 24 hours to choose and to act.

 

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It is a losing battle

I have known for a decade and a half that this diagnosis was a fatal blow. Fatal to our lives together, fatal to our future, and literally fatal to my sweet and ornery love, although he always refused to believe it.

Sometimes i suspected it would kill me too.

In the strange way common to dementia victims, although he grieved and protested and denied and fought mightily against the slow stripping of his abilities, nonetheless he never believed it could kill him.

He sometimes tried to plan for leaving and going into a care home, and to be noble about it. He was diligent in looking for a new man for me, as if that was important for my survival, but never factored in his own demise.

And along with him, I have struggled and fought and protested and advocated for him and organised for better care every step of this long slow decline. We have been and are now intimate and loving to a level I never would have imagined. Stripped to our souls, we know who we are.

We are a team, but we are losing this battle together one day at a time. All we have to look for now is comfort.

Every good day, every smile, every dance step, every coherent word, is a victory. A moment of bliss, but only a respite on the very long road to defeat.

What I personally selfishly need is an end to this unending trauma, and I cannot bear that end. I cannot imagine how to survive that, although I know so many have done so. It must be possible, but how?

It is inevitable but that does not –  and has not – ever made it easier to accept.

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