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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What happened?

The last two and a half weeks have been a high pressure whirlwind.  I have been afraid to write about it for fear of tempting fate.

On July 5th Don was rushed by ambulance, sirens whooping, to hospital from the care home. He was moaning and shaking and had severe pneumonia.

In emergency, antibiotics were started before the lab tests came back. The wonderful hospital doctor had The Talk with me, but I could not let my love go, not like that, suffering, and no warning and no care, and no painful and loving goodbye. It would be a total failure of his trust in me. I know I will have to let go sometime soon. But not like that.

I could not.

We agreed to treat him overnight and see. By morning he was comfy in a lovely room at our new hospital, off oxygen. He opened his eyes and smiled and asked, What happened?

Indeed. The questions haunt me, though apparently the “system” and many of the people working in it think old sick people just have shit happen to them. And no one thinks it’s unusual. Or asks too many questions.

He is, so far, better now although the care home has another respiratory outbreak going on. I fear, because he is not back to his usual bouncy bossy self.

I fear. He will die and no one will ask how or why, because he is old and sick with a fatal disease. But he loves music, and dancing. He grins and makes great silly jokes.  He has been enjoying life lately.

He developed near fatal pneumonia in the “care” home, with no one apparently noticing, until close to the last hours.

He has mostly forgotten and may get his joy in life back, who knows? But I will continue to ask, What happened? I can not let him down.

 

iend in my heart, and the huge political pressures around care and good care.

See http://www.seniorsvoices.ca – family intervention.

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Lunch

Went to the care home to have lunch with my love today. He had just got up, which means he had missed breakfast but the new Director of Care has put a note on his care plan to stuff him when he is up and around.

So he was calm, a little sleepy still, but happy, smiling at me. Lunch was actually pretty good too and I was happy to help him navigate it.

At one point he looked away from me, not knowing me in the moment, and said contentedly, “yes she is a wonderful woman and a very good wife.”

Made my day!

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Worst Ever

I have sat through dozens and dozens of forest industry corporate exercises in persuading the community folks in the room that a)  they can’t afford to do better or b) they are going to do better tomorrow or c) they are great well-meaning people and it is all someone else’s fault. Meanwhile of course the chainsaws bite and the toxins flow.

We in the environmental field call it “Talk and log.”

Today at the mock Family Council at Comox Valley Seniors Village where my true love is entombed,  we got all of it full press.

We got the lovely delicacies. We got the excuses – not me, it was before I was in charge (but of course the Chinese corporation and Island Health were in charge whoever the faces in the minor management roles at the moment).

It is the government’s fault because they don’t pay us enough (said with sorrowful faces while they know they do not deliver the hours of care they ARE paid for, because how else can they make a profit?)

It is the union’s fault because they aren’t negotiating for pensions for the staff (I kid you not, and about then I got very nauseous.)

It is those lazy care aides, standing round doing nothing. Yep their fault. You bet, let’s blame the workers.

oh yeah it is you families, always phoning the nurses to find out how your beloveds are. You have to stop that because we’ve cut the shifts and they don’t have time to talk to you anymore.

The difference for me from the forest industry is now they hold my dear very ill darling captive, while the lies grind slow.

I went home and cried and cried. I have failed him, leaving him, in my desperation,  in the clutches of a company that will do anything for profit.

Then I took a very long shower  trying to wash off that “Family Council.”

It didn’t work.

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