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911 no guns

Tonight i am remembering that about 7 years ago, using up those precious respite hours, i went to the Courtenay rcmp shop , feeling guilty and ashamed.

I said, You need to know:  If there is a 911 call from my address,  i really need you, because my love’s dementia is getting violent.

But I insisted, Put it on the file, there are NO GUNS here. Do not come in shooting!

As well as being personally scared 24/7, I felt for the cops, emotionally confused, not knowing which call was nutsy (sort of like  living with dementia but multiplied a zillion times).   But i was scared too, alone with a delusional partner. And i didn’t want them showing up to an unknown situation, scared and trigger-twitchy.

Ok,  the cop at the front desk said, We will put that on file.

I didn’t have a lot of faith in that,  but i hoped they might have my back without horrid force. I knew it was easier for them to be dangerously defensive as the default position and that bode ill for a wild and strong (and big mouthy) guy with dementia. If it came to me calling 911, it meant he was driven raving mad by so many delusions that he could no longer make sense of.

So, about a year later i was testing out a new phone, in putting numbers,  and started with 911. To my horror, the phone called!

I hung up quickly, and much later figured out how to turn location tracking off.  (er, the 911 folks say, don’t hang up, stay on the line so we can clear that call. oops, never again!)

About an hour later, as i was toddling off to bed with my pjs on,  there was a quiet, discrete knock at the door.

Is everything all right? We found a call from this phone and we know there is a dementia case here.

Are you sure it is ok?

A steady searching gaze.

Gobsmacked at so many things:

How they were able to track an unused phone;

How they had tracked and remembered a report from a year or more ago;

How sure i was that it was dangerous to have cops called to a violent scene. All part of the fear and racism escalation we have see for decades. Deep in our behaviour now, ssdly.

I remember when cops were on the street all the time, didn’t have guns, had time to know people in the hood,  and we were not afraid of them.

And I will never forget how glad i was to see that youngster quietly on my doorstep, making sure all was well. I slept better for months.

 

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Old and failing

So my love is old – 86 in April. I remember how we imagined we would cuddle together by the fire, both of us understanding the dreadful gates that age imposes, but neither of us imagining it would come to this.

He always insisted that when it was time he would go to a care home so  I could be free. I do not know if he meant it, because this disease is a shape-changer and what is  – or was –  moves, as so our life situation.

But I see and hear and interpret  from the limited monitoring i can do, by Skype 2 times a week and calling the care home LPNs every day, that he is slowly going away.

Just a couple of months ago,  on good days, he was talking like crazy and cracking jokes that only he can understand.

Now for 3 days straight they have used a lift to get him out of bed.

I don’t think or hear any evidence that he smiles and jokes anymore. I fear he is losing spirit and hope.

I get no reports anymore from the care aides who love him, because the most efficient part of Island Health’s swanky administration has been to plug the possibilty of real info – did he smile or joke today? Those jokes that no one else understood but cracked him up…

I am afraid this lockdown has cost him the will to live. Not sure about me either to be blunt.

When you have had dementia for 15 years, we all know it is inevitable. No one gets out of a long term care home alive.

But despite his chivalrous instructions, I always planned, and arranged my life and work, to be by his side every step of the way. To hold his hand, to reassure him with love.

He is still eating mightily, so my fear is hopefully premature,  but i think he will be leaving soon.

I will never know if he lost his fabulous joie de vivre because it was the natural path to death, or because the lockdown cut him off from nurturing. Everyone in masks, no hugging or touching.

That applies to me too.

In the meantime i think i will entertain myself by finding out about death rates in long term care. Some deaths, of the … 2 dozen or more i have seen over the years in a 17 bed ward, are clearly understandable.

But so many more are unexpected. And uninvestigated. Especially during outbreaks and lockdowns. I have been uneasy about this for a few years.

One wonders if anyone ever looks at death rates in these quasi-prisons,  or does the entire system shrug? After all, they come here to die.

But if you care enough to forbid visitors for months on end, you ought to care enough to look at the death rates.

Does the coroner ever look? Do the cops? Does the Public Health Officer even glance at the reports and look at the time periods or like everyone else shrug,  because who cares, they are old and dying anyway?  Is this entire warehouse system killing people, at best, by cold kindness?

 

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Alone

I have always treasured and fiercely defended my alone time. Revelled in the luxury of it.

But this is the first time i have been truly alone, without friends and neighbours and colleagues dropping in, for work or fun, shared meals or walks, been without meetings and greetings every day or two.

First time alone without my partner – in the bush, on the lighthouse, never really alone. Pissed off, driven crazy sometimes, yes, but for sure not alone. Folks, if you have people living with you, you are not isolated. Give up that guff.

It is also the longest time i have been unable to see my love in the care home. I know some day i will never see him again, but that will be goodbye. Closure, at least, no matter how hard and bitter. Over, at least on the physical level.

And maybe at that time i can go out and about again. In fact, i will,  no matter the covid situation, because it will not matter anymore.

But now, while my friends gather and share, I remain clostered, trying to make it feel like a mission instead of madness. Waiting, because i fear not being allowed in to see him if I am careless. We have no idea what the rules will be when this cruel separation is over, but i feel the only thing i can do is guard myself, to guard him and all the others.

Meanwhile, and all this while, the world has gone on its merry way.

i do not see my friend who only sees her family … or my friend who is very careful but travels to see her family, or my friend who distances from her family but visits many others every week. Or my family here who have their own hard and busy lives. Etc etc etc

Now with summer we might be able to do the 6 feet thing, although my hearing and instincts are to be closer to people. An ape at heart, as we all are.

And now it is Mother’s Day. I have no children and my mother and father are dead, my brother and sister far away. The family i have here are my love’s family.

When i was very very poor – like can’t afford a dozen eggs because of the rent poor – Christmas was the hard time, to see all the people with big packages and bags containing stuff I could not imagine.

Now for the very first time, Mother’s Day is making me, a lucky and i think loved, well housed  senior feel poor again. And very alone.

 

 

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The Window Visit

As I feared, the Window Visit was a disaster, at least for me. He will not remember.

After resisting for weeks, and a soul-rattling conversation with one of my sisters in sorrow, I gave in to the temptation.

I was told he was up and about and I thought, what if i never see him again? Just as i have been driven since the unrecognised pneumonia episode last July: “Better go check” so i did.

It was a little creepy scouting along the building, but the lawn area of the big dementia window,  no longer mouldy or cracked (victory!), held bird feeders and nesting boxes i think, and sparkly windmills. Cheerful. It looked like someone cared.

So I knocked on.the window and a lovely care aide brought My Man over. After some cueing, he saw me, and i swear i saw him say “what are you doing there?”

Of course even if he could hear me no answer would make sense, so I just waved and blew kisses and held out my hand toward him.

Slowly he reached out to try to hold it, over and over. The glass of course was in the way, and he reached down and then upwards… seeking.

My heart shattered, again. Who knew there were so many pieces to break in a broken heart?

Soon he went wondering off, to try to give his afternoon muffin to another lady,  said the care aide.

At some point we must learn to distinguish between health care and torture.

 

 

 

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Sisters of Sorrow

Tonight we talked by Zoom – we sisters who have or had hostages in BC’s Long Term Care system in the Comox Valley.

Only some few of the multitudes,  we in Crying Out Loud. We are sisters who met and bonded in the dementia ward at CVSV.  There are many more – husbands, brothers, wives, sisters, sons and daughters and all the relations and friends – sorrowing and grieving, all over our valley, our island, our country, the world. No one is untouched. We are legion.

Another elder – an amazing woman who should be honoured, who herself contributed to advancing health care – has died. Her daughter croached between the shrubbery peering in the window to see her mom until they let her in.

Only allowed in to see and feel and touch your loved if they are dying.

That’s the outbbreak rule and the care home says it cheerfully, as if it was reassuring: “Of course if he is palliative we will let one member of your family come in each day.” Or maybe the priest, but then … not you.

Delivered as good news, but in reality breath-takingly gruesome and inhuman. You can only see them if they are dying.

Now more “residents” — that means our family members —  are in peril and we all know what it means. Refusal to eat.

It’s the disease, yes, it progresses that way, the doctors say, but also, we know,  depression from the isolation. No live music, no group games, seated 6 feet apart in the so-called lounge.

Oh no there’s – they say – no infection here, and the CVSV has been locked down for 48 days now. And they can’t even let dementia patients toss a balloon back and forth in a group? They laugh when they play that game, but No.

Jesus wept.

We have seen that depression/refusal to eat/  triggered during other outbreaks when we were locked out. Our loved ones do not know why they are locked away or where they are, or where we, who were their trusted guides, although they know not our names any more,  have gone.

And we in our sorrow and pain only know there must be humane ways to deal with aging and dementia. These prisons for elders are disgustingly wrong.

There could be ways that allow pods to be small so staff know the people trusted to their care and the people know the staff and each other, and so infection does not sweep through vast wards. Ways that would allow us to be there, instead of clinically, mathematically, locked out during lockdowns. There could be loving ways.

I call them wards but the facility calls them wings. In reality they are cell blocks for those who have committed the crime of being sick and mostly old and mostly demented.

This is evil; this is wrong. And we will change it.

Truth is, long term care is health care. It is not a stay at the spa as the ads for the profit-driven companies pretend. No one goes into long term care for fun, but it does not have to be hell.

And no one lets their loves be put in this broken system, until they themselves are also broken. My sisters in sorrow and i are barely surviving. Only at the very end of our ability did we let our loves go.

Long term care must be brought under the Canada Health Act, funded, designed, and treated as the compassionate health care it should be.

We sisters in sorrow invite you to help us make the changes we need. Sign up for the email newsletter for Crying Out Loud, and all together we will make these changes.

 

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Don Calling

The phone rings. I see it is the care home and as always, my heart sinks.

He is sleeping so much, and i feel the separation so keenly that i am generally in a paralysis of fear and despair.

There is a familar humming and stuttering.

“Hi,” says the familair voice of the nurse. “It’s Don. He wants to talk to you. I asked him if he wanted me to phone you and he said yes.”

Astounded, I say “Oh, he is having a Very good day.”

There followed some love talk, (the nurse said he was kissing the phone,) and the noises we share to communicate sometimes and then, I swear, he said “What are we doing here?”

Stunned and knowing nothing much made sense to him anymore, i improvised – “There’s a war on and no one is allowed to move around, but I will come to you as soon as the war is over and they let me.”

I said i would come to the window tomorrow and he said “yes.”

The nurse reported that he had moved off singing and dancing, and she had to go help someone else.

A rotten day has turned around in what feels like a small miracle.

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Covid

Since the facility was locked down for an influena A outbreak just 2 weeks before the Covid lockdown, or lockout, I have had a bad feeling about this.

Before i say more, i want to give a shout out to Island Health, who have been ahead of the provincial actions in many ways and who are doing all they can to protect the long term care facilities.

And BC itself has taken emergency provisions (and had the contractual and regulatory – hello Licensing-   ability and the ethical staff to use those provisions.)

And every single underpaid staff member at this Seniors Village is working way beyond what should be asked of them, including voluntarily not seeing their own families. My respect is huge for these good people i call my friends. We have been through a lot together, and they have been through much more.

Where the BC regulatory reform goes after Covid, if there is an after, we will see. But for now Don’s care home on Vancouver Island is probably as safe as it can be.

But my darling himself is in bed far too much of any day to hope. Today, he was only up, by himself mind, for half an hour, after getting all his meals in bed.

They are turning him to prevent pressure sores and he is still eatimg heartily. But this is not good.

The last time i saw him, about mid march, we wandered around and around for about 15 minutes,  and then he said, Wait, is that you? I said, Yes! It is me!

And he said, “Oh that is wonderful,” and touched me gently all over my hair, my face, my body, breathing in amazement.

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Kippers

Figure i will save the tins of kippered herring i keep buying because my AWOL darling loved them… gonna save them for the ensuing famine if we don’t get this darn bug under control. They would each be a week’s worth of nutrition in a famine.

Right now we are all struggling and huffing and puffing with having to  fight covid on its natural terms… distance, avoiding infection, etc. instead of what we are used to — pop a pill, brew some magic herbs, call the doc,  go to Emerg.

Nope, says Covid-teacher, welcome, earthlings. It’s my world, for now.

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Shelter in the storm

My love’s care home at Comox Valley Seniors Village is once again closed for an outbreak. Not the dreaded Covid-19 but influenza A. It has spread from ward to ward, but not so far tonight to his special care unit.

Fortuately he has no concept of any of this, except his old belief that they were all being held there to be killed and eaten… and he has mostly forgotten even that, thankfully, enjoying his bed and his food, and occasionally engaging in this or that, as he wanders round and round. That content is due to care aides who know and understand his rhythms.

Also a beefed up Rec Department has interesting things happening every hour or two so all residents are more engaged.

This afternoon a small number of our Crying Out Loud group got together, widows and long term caregiver survivors. We did not hug, and mourned that loss of contact.

We were all remembering the disastrous norovirous outbreak a year ago, when the care home, with almost no management, failed to do necessary cleaning. Two of our life partners died during that outbreak.

Now the same care home is about to lose its public administrator. Her time is up. She has put lots of stuff in motion which might bring this place up to the level of the non- profit homes in the Valley. But none of those measures have yet matured or endured.

And in a massive gesture of non- confidence, the newly-hired Director of Care has quit.

You can’t change corporate culture by forcing them to hire an extra kitchen aide and a couple of cleaners. Or the rec folks who are making a huge difference in the atmosphere. Less like a prison, more alive.

So here we are – a year later – in yet one more outbreak, with no reason to believe cleaning protocols will be inspected or enforced, top management again missing a critical leadership role. And the Health Authority ordering no recreation or visitors.

The same old grim scene that kills people, from infection or despair.

And yet in the face of this, our group gathered, laughed, understood each other’s pain, respected each voice, enjoyed the food (Grazie mia amica) and the stories, and then we figured out the next steps in our action plan.

The comfort eased my pain-filled heart.

May we all find such kind shelter in this storm.

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Thoughts on care

I am bemused tonight and wondering.

This afternoon i watched an incredibly talented dental hygienist talk and massage my darling into letting her first look at, and then step by step triage his teeth. Oh not fillings, but checking for pain, cleaning, investigating and fluoride. And some other magic tricks.

Some months ago, he bit and hit her but she agreed to try again.

Lo, the new happier Don, the one off hydromorphone, and with a whack of loving care –  kisses from me and her chin massages –  Who knew! – and happy calm chat (she kept queuing me back to MY happy memories, managing both my emotional messages and Don’s receptors) …

That Don was perfectly happy to lie down on his bed and let us coo and fuss over him.

It was touch and go from time to time. He can be cranky guy, running on pure emotional intuition. Natually defensive. Anyone would be – will be – if what people were doing to you made no sense that you could understand.

Each time she backed off, came back calmly, and slowly as each step was accepted, extended her wish list for his tooth care.

This dementia whisperer persisted. When we started she told me,  “Relax, I have all afternoon.”

As she packed up, he was happily snoring!

Later I realised that her having enough time was totally amazing. It took me awhile to feel or believe  the luxury. Not in a rush, not answering a call bell,  having the time to just be with us, for as long as it took, and relax us both.

Care is for dementia is so complicated. The talented ones, care aides and the many other professions, should be honoured as special healers.

They give our beloved ones the care they need, mental and physical,  and they help heal our tormented caregiver souls.

 

 

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