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Just saying, not being melodramatic, just factual.  If suicide was available, i would consider it. Start planning options. My preferences, like no drowning, no hanging, do limit the field and that is probably good. Maybe. I guess. 

My close friends and my doctor know i have struggled with this for years and especially since Don got very ill.

In bad times like tonight, one thing holds me back. I promised myself i would stay while my dad and my love were here – in this particular time/space – because i knew it would hurt them too much.

My dad is long gone, and relatively peacefully. He was ready to go and advanced cancer and a whack of sedatives set him free. My long-serving caregiving sister is beginning to reclaim her life and i rejoice for her.

I have been so often tempted to cheat and i say to myself, well your love knows you no more, you are free.

Strangely,  I am almost eager to see what i will do and feel when i am actually free of those moral bonds. The real test. Will I decide to leave, no regrets? Or, an enormous weight of trama resolved, will I live the last few years of my life with the joy i feel just outside the reach of my soul?

I am so curious to find out. The inner me has been so stripped by my love’s dementia, anything could emerge.

But so much for if and when.

He sometimes, given time and space, does know my being, of course not my name and not who-in-the-world i am, — no relational structures, human or spacial,  of any kind, mean anything now –  but once in awhile, after time to sort things out, he smiles in his eyes, and holds my hand and sometimes hugs or kisses me, when possible.

Which brings me to today’s epic fail. A faulure of system communication, a failure of compassion (well that would be the health system’s management of long term care in bc altogether) , a cascade of issues including a failure of the unit LPNs or care aides to answer for 2 hours my repeated fail-safe phone call to alert my pending visit.

(All cool nothing to see here All reformed and good to go. Oh yeah,  except the day shift staff have been unable to answer the phone, for hours, for days and days. Short staffed or just ignoring family calls?)

All this, AND he is delivered 15 minutes late on a 30 minute once a week date,  the 4th precious 30 minutes in 10 weeks. It takes my love 15 minutes to recover from the journey from his safe ward to strangeness.

All this leads to emotional catastrophe for me, and maybe a bad day for an inexperienced rec aide who was just filling in.

My love will remember nothing, not even the part where, after  sitting at the table, and calming down from that long journey through various locked doors, and us playing games with a stuffed toy he pushed toward me, me carefully not touching it because of the rules,  after 10 minutes, he slowly shakily  reached out for my hand and i stretched a tiny finger to him…

He will not remember. I will always wish i had died before i was forced to pull that finger back. “Ma’am that’s against the rules, Ma’am you will have to leave. Take it up with Bonnie Henry.”

Care? Compassion?

All I can think tonight is how i failed to protect him.

A week later, for our next 30 minutes, he is shaking and scared. He just got up, they say. And he has no idea why he is being brought here to a strange place and it scares the heck out of him, at this point in time today. He is really out of it.

And it is so cold in the visiting room that i am cold too, but that is a good reason to hold and rub his hands and give him a neck rub and vow to myself to bring a blanket next time.

Anyway after a long time in his perception and mine, he calms. We explore the room a bit, and suddenly he gets a smile in his eye and swoops down and kisses me. He says things for which i have no comprehension.

Then almost instantly the moment is gone and we go back to walking around. No music. Nothing much there just walking around a pretty boring (to me) room. To him there is lots of stuff to explore.

Especially the floor. For years he has seen and tried to touch things on the floor. I have seen this many  times before in many other residents of his dementia ward.  Must be a … symptom or something? but  i can’t find it in the literature.  And i notice this floor has little bits of this and yucky that, so i steer him away from those. One does learn a few skills in a dozen years of dementia experience!

I stay close partly because the ancient body magic remains and just touching and feeling him is wonderful. I feel alive and i know he does too. I wear his old shirts when i am alone because i can imagine they still hold him in them.

Also he is still a bit shaky on his feet so i have an excuse.

So we go round and round and round, and sit down, and he picks up and pulls at the mask they bring with him. Trying to put it on him when he was shaking and scared would have been disastrous so they leave off.

Then about 15 minutes in, to my amazement,  he picks up the mask and puts it on his head trying to make the elastic fit around his head. A darn good guess if you ask me!

I ask if i can help? and loop it around his ears and put it on over his mouth (figure the nose would be pushing it – you never know when you push the limits and you might get … to be honest, hit, in what to him is self-defense– reality check!  That IS the life of the care side) and… OOOH he accepts it! I tell him it looks great and he smiles proudly.

Everyone around him has been wearing masks for weeks, so i suspect he wants to fit in. No one pays much attention to learning in dementia patients, or even pattern language.

But i just don’t know. Could certainly be. And he does seem to indicate that my mask and his are together.  Hmm who knows? Who pays enough very close attention over years and days and hours to the subtleties of communication with dementia patients except families? Researchers? Not. Care staff, Not. They have dozens of other people on their shift.

And a couple more times unpredictably I see him smile suddenly in his eyes and he hugs and kisses me. And each time  then the moment is gone, and we go back to round and round.

When the aide comes back, she says, Oh, he is calm now.

I say, could he have a sweater please? he is cold.

I wish i had remembered to suggest a warming blanket. They took the warming blanket device away from his unit a year ago, but they would have walked right by it to get back to his room.

This will be a very upsetting post for those family who have not been immersed in the nitty gritty of care for Don… which is to be honest pretty well 90% of them. Highly recommended you do not read this (as if you ever do!!!) because it is super upsetting.

So to the story.

I get to see Don for the third time – this would be the third 30 minutes – since March 10th. The other times he has been happy, sometimes estactic, to see me.

This time he is not troubled exactly, but …. not present either. Sort of stunned and absent. This is not too unusual, it is hit or miss to find him focussed or happy. Hard to hit in 30 minutes out of a week!

When he is brought into the visit room, the aide pulls up his pants. As things progress and we walk around, he hoists them up, over and over. They are way too big for him, the elastic shot,  and i think nothing of it at first. He is happy to have my help hoisting and tucking.

But after about 10 minutes, i realise the weird bulge hanging down (uselessly) around his leg is his diaper, politely called an incontinence product.

No matter how i hoist and tuck, as he tolerated it and even said thank you a few times, it keeps falling down. He is distracted and miserable and i am feeling useless because i don’t know the exact way these things should be put on. I do know that would require starting over, pulling the over pants with those damn hip protectors down, and i also know he is in no mood for that. It would ruin the remaining 20 minutes of our time together for the next 10,000 minutes until our next visit.

He does ask, once more, “What are we doing here?” and i have to answer “oh baby i don’t know.”

So although we both tried to get into better avenues, this visit, the third very precious 30 minutes in 3 months, is …. uneasy.

When the aide comes to take him away, he is still distracted but trying to follow me.

I decide to complain.

Again. I am so very tired of having to do this.

After 20 minutes a lovely nurse who i really like comes out to talk.

This, dear readers, is where it gets really complicated.

Families at this Retirement Concepts facility have been paying privately for incontinence products. Thousands of dollars a month on top of the care home fees.

At the last family council, it was announced that (under the public administrator) this would stop and the company would provide the required high quality products, as happens at ALL the other care homes in the valley. I checked.  We are talking up to $200 a month per resident,  so… the math is interesting. Peanuts compared to the $5 an hour skimmed off staff wages but still, I guess every penny counts.

Anyway this beautiful RN starts talking and says, well Don is covered under Vets so why not let Vets pay for a better product instead of the facility?

Uuuuh … Why? The facility is supposed to do this,  and it all comes out of taxpayers anyway (the facilities are paid by us the bc taxpayers to provide these necessary products).

It went on… Because Don was mobile the products didn’t work, he loosened them up. Translation: it is his fault! if he was immobilised this wouldn’t be a problem.

Dear heaven! Just don’t push my buttons. Fought that battle 2 years ago when they wanted to strap him into a wheelchair.

I mentioned that i had seen him with drooping diapers before Covid and before facility products, when Vets was paying for the “best” product, so the issue was actually as simple as training care aides how to put on a diaper.

Come to think, i can’t remember how often i would come to visit pre-Covid and while Vets was paying  for the so-called high end product, and he was in that same miserable state. When it was pointed out, the care aides would take him away and fix the issue and he would emerge sparky and ready to dance!

That was only when i happened to be there, once a day. What happens now?

The beautiful RN said because Don was mobile and kept patting at his hip protectors,  it loosened the diaper. I said Yes, but the sticky tab was not pulled off so of course it couldn’t stay on!

“Care aides need training in how to put on a diaper,” i said, hating how it was necessary to get down like that.

It sounds like not rocket science but apparently it is.

And then we got into 2 versus 3 litre holding diapers and if don got a rash from the inferior product and me pointing out that  no one needs a 3 litre holding diaper  – they need changing!  and we went round and round and round until i was exhausted and bored.

But they still want Vets to pay for  a product the Tena rep told our family council was unnecessary and which might avoid having to do a night time change.

Which reminds me my sisters in Crying Out Loud did say they were told you the family rep had to Request a nighttime change.

Some care home.

Babe, I promise you we are gonna get out of there one way or another. I am so so sorry.

Remembering tonight the day – oh 6 or 7 years ago when we were flying to Ontario. To my …. er, concern,  Don decided to share with the airport security guy as we went through the checkpoint (all of that being incomprehensible and thus nonexistent to his nibs, nice trick!) his precious stones tucked in his pocket (no way was he having anything to do with putting them in our checked bag.)

So just as we were going to walk through xray, he pulls them out and proudly shows them to the guy on security. Wants to.give him one. A special gift.

I am holding my breath. And then  in one of so many beautiful interactions among humans , the man grins and says, hey, yes! It’s ok, you keep those.

See I have some too, and pulls his own special stones out of his pocket.

A file has been shared using Link Sharing. https://s.amsu.ng/OLVLsOJnCDCN (Expires: Jun 13, 2020)

Today for the first time since March 10th i got to see my love for a half hour. He was in a very good mood. I wouldn’t say he “knew” me but he had many big smiles and laughs, and said, something then clearly, “44 and there you are!” with a huge grin.

Clearly he has been very well cared for, in his body and spirit, despite the lockdown.

And now i have real spirit to continue in our campaign for better long term care.

COVID-19 cases in long-term care inspire redesign, reform of institutional-style homes

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.

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?

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.

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.

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.