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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Where are we?

So since he returned from hospital, he has only really been awake for a day  about once out of four. That gorgeous smile (gorgeous to me and his caregivers) has only briefly appeared.

A couple of days ago the doctor took him off the pain killer, saying it was the most sedative of all his meds.

The first day was wonderful – up all day and smiling and laughing and being present. We danced and danced. Answering to his name. Sort of like in the hospital. “Responsive” i think is the word they use.  I ‎see his eyes are focused, although not necessarily on what i would like!

And that has continued but he has continued to fight desperately to protect himself whenever he needs care – washing, changing, clean clothes. It is all traumatic for everyone, him, the care staff, me. This is not new behaviour.

In the last few months he has developed a strategy, during this desperate fight to protect himself, of spreading his knees so the care aides can’t take his pants down. It is devastatingly funny. It is also in my opinion, brilliant. How in the midst of all this total loss of cognition did he figure that out?

I am secretly proud of him. This is the guy I picked. Not educated, no money, but so damn intelligent.

But this trauma day in day out continues and is basically disgusting. Drugs don’t help. Less drugs don’t help. He is strong and defending himself from any invasion of his body from changing shirts or socks to toileting. The care aides are sometimes hurt although not intentionally. What a way to live, in fear.

After the battle is over, he is usually fine. There are advantages to having zero memory!

But whether he will ever bounce back to his level of enjoyment of life before the pneumonia remains a big and troubling question. I am reluctant and afraid to predict.

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Uneasy

It has been 4 weeks since Don came back to the care home from the hospital.

He is… okay. Sleeping a lot which is fine because pneumonia wipes out people a quarter his age. But what is missing is his smile.

He is worse now than in the hospital in terms of happiness. His bubbly jokey nature – that which convinced me he was enjoying life despite all and should be saved to continue –  has not returned yet. He seems to have left it in the hospital, where he was quite happy, treating it all as a great adventure, after he regained consciousness.

His floor of the care home is just coming off 3 weeks shutdown for an outbreak of parainfluenza. Maybe when recreation starts again this week it will help. Right now the wing feels like it is occupied by ghosts, drifting around. It is, if i let myself think, ghastly.

I summarize the med info by saying it causes croup in the young and pneumonia in the old.

Is that what he had? No one knows and no one as far as i know is asking.

But i am. I am shaken by my lack of trust. I am hovering over the LPNs: Did you check his oxygen, did you check his chest? They oblige, but all seems fine, except his missing smile.

What we can’t check is his spirit, and i am fearful it may be broken.

I think i will try to move him to a different facility with better dementia care, but he may not make it through the waiting list.

Tomorrow i go back into the land of Island Health bureaucracy, not for a social cause, but to desperately try to give my love some ease.

 

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