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It is 3.35.

He comes slowly down the corridor, staggering a bit, hand held by the care aide, not distressed but not walking well, very distracted by all these new strange sights.

He is 5 minutes late for our 30 minute meeting twice a week. I am dancing on pins, wondering if i should bother the very kind folks at the front desk to phone back into the forbidden zone and ask? But there he is.

I come out to greet him and the care aide, facilitating, says, Oh look, here she is.

He says they left at 3.20. It takes a long while, and skill, to bring a severely handicapped guy through all these strange vistas he has never seen before, without triggering extreme fear.

As we go in to the visiting room, he has no idea who i am but i sound friendly and he takes my hand in his very very cold one.

We do stuff, and slowly his hands warm up. He happily sits (this sounds simple but involves a lot of suggestion, patting the seat, and him kind of roving around, finally asking, Sit here?) He looks and looks around the room we have been in many times before. More and more warily.

Now, my true love scared is a sight to beware —  even now i myself am slightly apprehensive — so I hand him the pool table wooden triangle hoping for a distraction, and he askes, To eat?

I say, er,

No, and try to interest him in making noises with it. No go.

He gives it back, not interested (that’s my guy!) and struggles up. We wander the room holding hands (yes same old room we have been in before, but each time new to someone with no working memory).

After awhile, out of nowhere, he stops and stammers, “i really really l-l-l-l lea-rned you” and bends down, holding me, quickly to kiss my mouth through the mask. Astonished, I turn my head and he kisses my cheek. For those 30 seconds he was intent, and then it was all gone again.

Disappeared into the dementia fog.

But for a couple of seconds, there was a beautiful happy smile in his eyes.

And so in my heart for the days until we are allowed to meet again.

Lovely 30 minutes today. He was awake and in a good mood and talkative. The care aide who shepherds him said he had been up since 10 am! She knew he was ready to sleep for a few hours but was afraid he would miss our date.

Ironic but so dementia typical.  I had scheduled the date for later afternoon because he has usually been in bed until 2 pm.

Just gotta roll with whatever.

So we walked around, he kinda glommed on to a fake potted plant and i had trouble moving him away… maybe some slight disarrangement of the decor there.  Gotta roll….

We played with the shuffleboard for 2 minutes, his eyes widening at the clack when he hit a token.

Then on around and around the room again.

He selected a stacked up chair, not the ones set out and sanitised for us, of course, to sit down. I tried but could not steer him to those on this day. And he promptly, happily, started to dose off.

So i got him up again. I would be happy just watching him sleep, but it could be difficult to get him back to the ward. I even thought of calling the care aide to say, bring a porter chair in case he conked out. Even then it could be a problem. He can be a dead weight and too much for us.

After another round and round, each time a new exploration, it became clear he needed to sit again.

I tried the internet looking for music, and this week the connection to Shaw Open worked. Yay! And soon we sat and moved our hands to the music, all the while his eyes were closed. But he was not asleep, just resting. I tested by leaving my hand still, and over and over he picked it up himself to the beat. And he answered when i called his name.

It reminds me of how much he always wanted to share music, and how sometimes I was not gracious.

Oh no no no! not Kris Kristerstoffison for the 9th time straight! because he didn’t remember the other 8 times and i already, 8 or 9 or more years ago, did not realise the depth of the memory loss. I am sorry to say we – well i –  argued. He just thought “crazy woman” and mostly reluctantly humoured me.  The ipod I got as a compromise was not really sufficient for him, because music is for sharing.

So today we shared this Creedance Clearwater music with our hands. Once upon a time we would both be up and going crazy with joyous dancing, but that was not this time and maybe….. he doesn’t dance the way he did just a few months ago? A few months – going on 5 months – is a very long time as this disease progresses.

Before Covid we danced.

Slowly getting the beat and doing fancy moves with his feet, showing off, and being so happy when i twirled away and came back. Not for a long time have i seen that. No dancing now.

I don’t know how much he dances now, or why or why not, or if there is even dancing music ever in the ward  – no live music that i know, no happy Friday parties i know, under Covid. And under Covid,  i cannot visit his daily life. I am not allowed to know what is really happening with him.

When the aide came to take him back to the ward,  we chatted and he at first objected.

Since he got sick he always hated people, especially women, especially me, talking when he could not understand. So we slowed and lowered our voices and our pitch, and soon he was joining in. In what sounded kind of like complete sentences. Not too sure just what he was saying in particular but he was very satisfied to be a part of the conversation, and listened to.

When we got him standing up, and as he walked out of the visiting room, with the aide holding one hand,  me the other, he started singing. As i slipped away,  he sang down the hall away from me.

Tonight a light story from …oh 8 or  10 or 12 years ago… one that still makes me laugh.

We had a plot at the co-operative  Anderton Gardens near Comox  – a magical space i highly recommend – although for some reason my love buddy never took to it wholeheartedly.

One day we went to watch the extraction of honey by the bee keeper there. I thought that might interest my bear and it did. We bought a jar or two that i gave him to hold.

Then, wanting to go see our plot which was probably 500 feet away, and knowing that getting don up and moving in the right direction would be a major chore, I asked *S* who happened to be there, to keep  an eye on him. She was leading the dementia caregiver support group i went to at the time, and i knew she knew what to do.

I slipped away for 10 minutes stolen peace with the plants.

Next thing i knew he was hobbling, furious, up the path, clutching his honey and his walking stick. S trailed behind, somewhat apologetically because she knew how precious those moments were, but guiding him.

At that time we had no home support, no respite, it was all on me 24/7 …

“You are too careless with me!” he shouted and accused, very indignantly. “I didn’t know where you were!”

I tried to pour water on the fire. Oh Yeah.

“But I knew where you were, with S and she is our friend who would always look after you.”

The embers glowed for hours after we made a hasty retreat to our apartment. I felt bad for S but there was no time for conversation. Getting him out of there was the best option to avoid the full volcanic eruption.

Looking back, still chuckling, because he was so very indignant and it was so funny,  i understand now finally that he was already much more impaired than i realised.

I needed time and space to not feel personally more imprisoned before i could hear. He wasn’t being selfish or stupid or possessive. He just didn’t know where we were and he was terrified.

The story of the dementia caregiver: Your person has already gone 3 or 4 more steps ahead of your comprehension into that long travail. And when you get a chance to look back, after time passes and maybe you get to catch your breath, you see.

“You are too careless with me!”

I didn’t know how bad it already was for him, because i held him steady in our daily life and did not understand how much i was doing. I did call myself his guide dog, but did not understand the depth.

In that angonished bad moment 10 or some years ago, he told me. I did not know how to hear.

Later, in one of the many care workshops, i wrote a message to myself for the future: “Listen to Don, he will tell you what’s going on.”

Eventually i could do it no more, and he was placed into care which is another whole exhausting story. But better than him shadowing me, albeit happily, all around the house.

Oh i had limits! i made him sit on the bed watching the bathroom door until i came out. Which reminds me of all the times he burst in while i showered, “Are you alright? i didn’t know where you were.”

Listening is harder now because of the Covid lockdown. And because he is much more away from me as the disease progresses and i have not been able to follow day by day.

(Talk about an epidemic by the way. Dementia qualifies.)

It might be a mixed blessing because i know the end of this long and twisted tale is inevitable. It might be good for my health to have more enforced distance.

But of course, i worry. If he had enough mind left to think about it what would he have to say?

The other words that echo and sting are ones from about 3 years ago in a rare moment of clarity.

“Oh i don’t mind staying here, it’s ok, so long (stern emphatic look) as you visit every day.”

And now covid cases rise again and i think, Oh my love, we have all been too careless with you.

i can’t begin to imagine the life (or to apologize for my own hyperventilating) watching cbc national on the opening of a tiny bit of day care for parents and their kids who are disabled and need 24 hour care from parents who have had no respite —  for either parents or kids – during Covid so far.

And i am also thinking of ALL those thousands and thousands of caregivers, of loved ones with dementia and all the other needs, who have dealt for the last 4 months without home care, without day care, without a break. Unbelievably hard.

I want to eat, walk back, all my bitching and complaining because my pain, much as it did hurt and does hurt, is a silly blip in the wind to those in the daily struggle to stay sane and care. I know, because i was also there for years.

I am awestruck by those parents especially who have chosen to give up.all their life to their child … forever.

But also all those home caregivers who have been cast aside by the Covid winds. You have a harder row to hoe than we can imagine.

All Respect.

And please get in touch if there is something i can do to help. Yes I am a wounded one, but nothing heals more than helping.

I am sorry I caused extra concern with my post from yesterday.

To be clear, I am just fine, and (almost) over my Mad. Might take a day or two more.

I am going to (hopefully) get another visit next week and we will go from there.

I am still convinced that these visiting regulations and the entire extraordinary lockdown of the care homes (to all but the couple of hundred staff who come and go every day) is as close to medieval barbarism as you can get, and as illogical as the witch trials. But that’s a tale for another day.

And hopefully some lawyers, lots of lawyers! because this cannot be allowed to continue indefinitely: https://www.jccf.ca/family-members-to-launch-lawsuit-against-ford-government-for-violating-seniors-charter-rights/

See also the letter to Nanaimo Seniors Village  https://www.jccf.ca/legal-warnings-issued-to-long-term-care-homes-who-continue-to-isolate-seniors/

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.

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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