Monthly Archives: April 2020

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.

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.

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.