The Vaccine

Today (written January 16, 2021) i got the first dose of the Pfizer covid vaccine, because i am listed as an essential visitor for my love.

I was a bit apprehensive especially since it is likely the second booster shot will be delayed. But the company claims (uh huh) 90% effectiveness after 14 days. Too soon to tell, way too early. As far as i am concerned, i am approaching it as a miracle of scientific advance AND a population-wide experiment.

My mother took DES when waiting for me to burst on the scene, and i did develop cervical cancer 30 years later. I don’t think they were related but she did, so i am no stranger to the perils of drugs and drug company cures. The victims of the opiod epidemic can witness that much better than i can.

But anyway i trucked up to.the Campbell River hospital and got the shot. Better to try then not, has always been my motto.

Came home, took a nap, got up feeling absolutely great.

Realised a weight was lifting, slowly, but inevitably. Whether this particular vaccine works for the long term or not, there is life at the end of this terrible tunnel.of fear we olders have been living in.

My generation remembers polio well with many survivors marked by it; my friend Jim walked with a limp forever because of polio, and he was one of the lucky ones.

My mom’s wartime generation rememered smallpox and yellow fever and so much more, besides living through years of deprivation and endless fear and grief.

I went to measles parties as a girl, because if a woman got german measles (so we called it) when pregnant, the baby could be borne blind. So at puberty we girls went to.the sick.child’s house and were encouraged to.hug and kiss and share cake, and especially chewing gum, in the hopes that we would get the measles now, rather than a few years later.

I remember the yellow quarantine sign on my friend Beverley’s house because she had what we called rheumatic fever. She lived, pale and wan, and her heart was damaged forever at age 8 or 9.

I remember the kid a block.or so away…. and the endless whooping cough on a summer night.

So after the nap, when i got up, i began to weep from relief and appreciation. Science will sooner or later save us, especially we elders, from this scourge too. Then we can get down to the real.survival issues, like clearcut logging the old growth, like the embrace of globalization so that our country could not make its own masks, or vaccines, or cars, or plastic doodads, like over-consumption on the spaceship.

Like the survival.of the spaceship as a viable place for human life, and what kind of life that will be.

My darling gets his vaccine Monday.


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Passing peace

I don’t understand – can only feel what is happening. On Friday my love’s youngest son came to see his dad for the first time in 15 months. This was just a visit, finally allowed.

It went very well, in a quiet room. As Don relaxed and we all chatted, I could see him homing in on his son’s voice. His son was calm and unperturbed which helped. We just sat and chatted. Don seemed satisfied and content. It was actually a great visit, for someone so very disabled, i thought.

Gave me a happy glow all weekend, just because it worked.

Had no expectations of anything as good today, when i bopped in to give him supper. I had a new baby doll for him too.

We were given a distant room, away from the noise of dinner, with a lovely view, which felt great to me.

It took about 15 minutes to get him to open his eyes and relax, and then 15 minutes of an outpouring of his words, none of which i got. Asking repeat is pointless because he has zero short term memory, except if he is triggered by a feeling like a threat (for example, pulling his wheelchair backwards, or loud laughter.)

As an aside, i do not know how much his care people realise how extremely sensitive and fearful he is.

So anyway, supper came and was greeted with his usual eagerness. It was quiet like the last visit again in this new room and we were relaxing. I was for once not in a hurry, had no secret To-Do list for the evening.

I slowly interspersed small spoonfuls of food with love talk and praise (got a tad carried away talking about what a good man he was for me and had to stop and wipe my eyes! hurts when i think that way).

Anyway as the meal wound on, small spoonful by small spoonful, his words more frequently fell into place.

I was gobsmacked when he asked “when he is coming?”

He clearly commented, “Good supper” and for pureed food it was indeed very tasty. i stuck a spare spoon into each item before i gave it to him, and then used my sanitized little finger to sneak that taste under my mask. Probably not quite allowable behaviour but i did not want to taste stuff his spoon had been in. Infection runs both ways.

It was a sweet time as he sang as he ate, and then later, we hummed and sang. I know we were communicating in our own way and truely just contentedly being with each other.

It was one of those deep connections words cannot capture and i do not want to destroy with words.

Then, because the care aides said his dresser drawers were stuffed with useless clothes since he now needs clothes slit down the back for easier dressing, we wheeled to his room and i loaded up a bag of clothes to take home.

I asked him to hold it for me, (helping still usually gets a positive response) and then we went back down to the common area, him with the bag of clothes and Baby doll, whose name might be Shirley.

I swear i heard him say, as we wheeled, “I’m going home.” The significance of what seemed a random remark, has only struck me — packing and carrying clothes piled on him as we did in airports –oh my!

He insisted as we parted, commenting “Heavy” as i took the bag of clothes, that i took Shirley’s little blanket but he kept the baby doll. We will see how that goes.

Dementia comes and goes in waves – and the situation, noise, over stimulation, and time to focus all play a huge role. Apparently, a love connection helps if one gives it time.

There is so much more cognition buried under those layers of seemingly insensible dementia than i have realised.

For me, i can hardly wait to dip again into that blissful passing peace. I will be joyful in the while.

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An interesting day

My partner’s son who is much loved by both of us, came to see his dad for the first time in person in 15 months. Up until now, he was only allowed window visits which were pretty useless at this stage of dementia.

It all went much better than I feared. My love was in pretty good shape, outside of needing to be cajoled and well, misdirected, out of chewing on a teddy bear.

I am sure he recognised his son’s voice. And he was calm and spoke several times, clearly. He was of course well groomed and actually pretty happy listening to his ipod.

I had feared this encounter because the last year has seen a pretty sharp decline in my sweet’s cognition and abilities. But his son seemed calm and accepting.

I can only stay sane by not thinking of the past, not looking at old diaries or even reading this blog.

But the care staff were warm and welcoming and it felt to me like we were in a weird and funny way, in my love’s new home, which it is.

As his days with us get less, I wanted him surrounded by observant and compassionate care. It does seem that he is, and it gives my heart ease.

For anyone interested, Crying Out Loud (which originated from a troubled dementia ward in the Valley) is sponsoring a discussion on Wed. April 14th at 4 pm about what quality residential dementia care could look like. You are invited Learn more. Please join us for this important forward-looking discussion.

It affects all of us, so it is time to figure out the future. You can register at

You’re invited!

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The little guys

Watching dreadful footage mostly on bbc about the starving disgusting treatment and in another case (cbc i think) bombed and burned children, I can only remember my loved, saying over and over, all through his dementia passage, “You’ve got to feed the little guys.”

Now he too is a little guy, opening his mouth eagerly, for another spoonful.

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Once again, our dementia journey takes a little twist, as behoves the trickster with its show times (when relatives, friends, or doctors come) and crying times.

On.Monday he was so sick, so bad, wheelchair bound, completely incoherent and barely awake, on puree food (no one had told me) and choking on it, and just generally about a gazillion times worse than 2 months ago.

I left in tears, overwhelmed, assisted by an kind caregiver, and spent the next two days in wild grief and, to be horridly honest, guilt and release. Trying to deal with having to phone the funeral parlor. Unable to imagine The After.

This disease sometimes goes like that, especially i guess for dementia longhaulers. All pretty much the same for weeks or months, a slight decrease, a long time at each level of disability, and at the end, very sudden decline. Two or three months ago he was still walking and feeding himself a lot of the tine.

As a loving partner, you get used to each stage of loss of ability. And just as you think, (after shock and grieving), Okay we can live with this, just as you get comfortable, another decline, another blow.

I know many families do not even try to accompany their sick person on this journey (gut wrenching for us observing, but probably just normal reality for our ill ones). They say goodbye at the care home door and go home to grieve. Yes, i have often envied them. I do not judge because grief is grief, no matter how it comes down on you.

Anyway after all that grief the last two days, i dreaded going back to see him again on our next scheduled visit, another dinner date. I dragged myself in and pasted a smile on my face above the mask.

And lo and behold, the trickster was back.

My guy was perky, had a lot to say, and apparently, plans, saying clearly: “I want to go to Canada”- his infuriating way for years of talking about our annual trip to his old sod and family in the Madawsaka Valley Ontario.

He clearly thought the space beside the table would be suitable, and asked several times. He used the extra spoon, upside down, to scrape at the table and feed himself, quite enthusiastically. He was clear about what food he wanted (well, all of it!) and said thank you. He did not cough once.

A month ago, I had hoped for a rebound where he would walk.again, but that is just not going to happen after 2 months in the wheelchair and not trying to walk. But today he was trying to reach the usual mysterious things on the floor and used his legs to move the chair.

He called me “dabe” which is close to the babe he always called me. He even ventured what i think was my name. He very clearly counted his fingers up to eight. I remember being thrilled 2 years ago.when he counted to five.

With what relief i greet this new slight reprieve. Now, and each and every time, every stage, I am back to scheming how to help his ravaged brain, how to comfort the soul i love within.

How to.put my exhausted finger in the hole in the dyke one more time.

Trickster, dementia trickster.



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If I can’t dance

“Don’t you understand? If I can’t dance I will die!” he pleaded one Monday night when he wanted to go downtown, not understanding Monday or that there was no dancing downtown on Monday nights.

Now, he can’t or won’t or doesn’t walk, i am told and i see on our covid-rationed visits.

Despite all these years, this feels very sudden and i have been avoiding writing this update on the hope it would pass, as so often before he has dipped and then bounced part way back.

His sense of humour is diminishing too.

But so far no bounce back, not yet. Even so, after a rather nasty supper, while he spilled food everywhere and alternated between feriously rejecting my spoon and then eagerly gulping down the offering, even during that rather unhappy supper, when he bumped me accidentally he turned and said, “oh, I’m sorry.”

And over and over for the last month he has told me, “I’m scared.” He is calling out for his mother, his big sister Eleanor and brother Dearl. Even Dearl’s long dead wife Glenora. No one but me would know who he is calling.

And i am scared too. I have been grieving and caring for a decade and a half, and i do not know how much more I can survive.

And then I pull my head out of my bubble and remember all the anguish of my sisters from Ward 1F and of all of us around the world, ensemble. It pulls me out of the grief spiral but it doesn’t change my endless shock and grief.

Every stage of this disease brings grief, and then, again, another grief, like a slow drip. A torture, alone in one’s mind and memory. This misery does not love company.

The disease has stolen my best friend, sneakily, piece by piece, no matter how hard we both fought against it, over 15 years, and it is not finished yet.

I have grieved every loss, and in the early days, he did too. Sometimes he raved, and sometimes we grieved together.

Now I grieve alone, and try to comfort him. “Don’t be scared. I.will be with you.”

He doesn’t understand the words but seems a bit comforted by my caress.


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Five Years

The day after i wrote the “Can I come?” post, when i was escorted, masked as always, into the room where I would help him with supper – always an adventure – he saw me and said first and clearly, “I want to come with you.” This happened.

And then we descended into words i could not understand , and trying to eat (him) and not spill too much food (me).

January 8th, 5 years ago is when our friend Debbie and I took him to the first care home for full time residence. Our hearts were breaking, but he was strangely calm, saying, I’ve been here before, recognizing the care home atmosphere whether from visiting my mom or his mom years before, or from the couple of respites he/we had at another local facility.

I haven’t written much since he/we moved to another home in the Valley. The atmosphere is different and my crazy protective fears have calmed. They went into overdrive after the pneumonia a year and a half ago, and I could never relax after that. Now, I do not feel I must phone every night, and when i do I usually get an accounting of his day from the care notes. Imagine!

I am allowed in to see him 3 times a week, which does not replace the ability to drop in and check his mood and care at random times, as i used to do, before Covid. It is probably, no, definitely, better for me. I know when i am going to see him, I know they will phone if something happens (because they have), and the rest of the time I can go about my own Covid-limited but enjoyable life.

But it is immensely more merciful than the months when i could only see him on video calls, which were, despite staff efforts, basically useless. He was usually in bed and not responsive anyway, of course, because TV screens stopped having meaning for him about 7 years ago.

May i never forget his unrestrained joy on our first during-Covid visit, just 6 months ago.

Now he does not walk so much, although not strapped in to his wheelchair. Now his talk is often bursts of song, incomprehensible like his words, where fragments make sense. One has to listen hard. The shards of mind throw up sense from time to time. Although, to be honest, he knows perfectly well when he wants more of a certain food or when i should shut up, and is very very clear about it. So it is a mix of mind-jumble and understanding, which makes it difficult to track!

I think he only recognizes me as someone he trusts, although he was calling to Debloris the other day. My voice seems to reach him, calm him, somehow. He will sometimes stop and listen and say What?

I know for sure he remembers nothing of his past, from his beloved family home or that family, to the rest of his life and the rest of his family.

He wrote “Going Away to Sea,” an account of his young days joining the Navy in the 1950s, for his grandkids, and to help him remember, but all that is gone.

Almost forty years of living and fighting and loving and grand adventuring together — all those details, gone.

What remains is still a beautiful smile I do anything to coax out, and a strange sense of humour — he tells stories all the time the rest of us don’t understand but which are obviously very funny.

What’s left is a caring person. “You’re hurting me.” “What, oh … sorry, are you ok?”

Wanting to share the minced stuff he gets for supper.

Wanting to share the napkin he tore from my hands in feverish hunger, then bit and chewed, to my horror, and then as i wrestled the rest away, generously, “Here, do you want some?”

At this bizarre 5-year anniversary, i am thankful he is still with me, but he is leaving, slowly stolen by this dreadful disease, and i know my painfully-loving task is to be there with him. That is what partners do.

But there’s no rush …. he is strong and from a long-lived family.

So I am going to have to find more things to entertain him.


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Can I Come?

The refrain of our lives for decades as i undertook environmental activism – “I want to go with you.”

And often he did, to meetings and conferences where his passion would contribute to understanding of love of rivers or the folly of our money system.

Sometimes he did feel out of place, and in the introduction circle would say, “I’m Don. I’m with her.” He kind of joked about a Tshirt that said, “I lift heavy objects,” because of the boxes and displays we schlepped here and there and everywhere.

Of course he was much more than he gave himself credit for, as the many friends who still care about him to this day would agree. His writing was stunning, provocative, evocative. His passion compelling, and/or at home, to be honest, irritating, more than once a week.

“Can I come? what will you do without me?”


But often i said No, as when a dear friend and I went to a people’s conference on dioxin in Baton Rouge. It was a grand experience, eye-opening, challenging, to see what organising on environmental justice (the communal right not to be poisoned in your home) really looked like, where Chemical Alley met the racial slums, houses jammed right up to the chemical plant gates.

It was one of the best experiences of my organizing life. When my friend and i touched down in Vancouver, we stopped for a drink to decompress on our way to the transit to her house where i would stay overnight.

Little did we know the tempest of angst brewing between my guy and her husband, whipping each other up to a fever of anxiety and righteous indignation, especially over that last pleasurable hour. Funny now, sort of, but completely vexing for weeks afterwards.

Fast forward a decade and a half.

“I want to go with you!” The insistent cry rejected our loved caregiver’s best efforts, she there to give me respite, and the outburst threatened one of those catastrophic dementia explosions.

But I was the one who exploded. I had a simple 30 minute shopping list at the mall. ALL RIGHT I roared, Come on!

And i stormed out (can’t remember if we took 2 cars or 1) to the mall.

“You want to come, come!” I yelled, and dear Debbie, my lifeline then, followed along, doing her best to calm him, distract him, assure him, while i raged and raged.

(I will say in my slight defence that it is terribly hard to live for years being shadowed by dementia everywhere almost 24/7, even to the bathroom – and that day i cracked.)

It was terrible, brutal. In the end i remember seeing him weeping at the store entrance while Debbie, truly shocked, lovingly consoled him. Her white face, his complete bewilderment, will haunt me forever. As will my rage.

And we all cried together afterward. But those tears did not really heal. May i never be possessed by that anger again.

Yesterday, years and tears later, in the care home at the end of our allotted hour, he grabbed my wrists and would not let go. “I want to come.” It took two care aides with hugs and a shoulder massage to get my hands free.

In the good old days – BC before covid, 10 months ago – i would drop in and out of his care home at any time. I could check how he was, randomly, and did.

He believed i lived somewhere around there and i think it consoled him. He would say, “oh there you are, I was just going to go look for you.”

And now as i rub my wrists, i answer with my soul, not words, i want you to come with me. I want to go with you.

Maybe, I hope, way down under the screwed up scrambled brain cells, in his soul, he too knows. I think he does.

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What i have learned #1

I never really knew what Namaste meant until i met a lovely strong woman in ltc, caring for an angry demanding bed-ridden dementia husband.

We sat together on more than one occasion and cried, together, very quietly, hiding our tears from our husbands and the staff, in the dementia ward.

I learned that her husband was an university mathematics professor in India, and taught high school here in Canada. She told me, as he hollered, and she wheeled him back and forth.

Seeking comfort from each other, when we could find a moment, because no one else could know how very dreadful this was.

Sometimes she said, What have I done that god hates me so much?

And i would try to say, It is bad luck- no god would do this to us, but i don’t think she ever agreed.

I lost her when her husband died. Gone instantly from the ward. I know she had family in the US and i hope she is with her sons now.

But i learned because of her what Namaste means. The god in me honours the god in you.

And that learning will stay with me forever.


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I lefted you

So he said, clearly, repeatedly, deliberately, as he was wheeled into the little side room where we get to spend an hour twice a week. He eats or to be honest gobbles, and i try to catch the spills.

I knew his words were only slightly tangled.

I know he meant “love” and i don’t think it was past tense. The level of cognition required to know it was me, out of nowhere, bobbing behind the mask, and put that statement out, is actually quite awesome. Given all.

And yeah, a couple or four or ten years ago i would have agreed, quite bitterly, that he had lefted me. To be honest, i still measure time by before or after “Don left.” But he never meant to, and he does no longer know he did.

He didn’t leave, he was stolen by dementia. And he went kicking and screaming, sometimes literally.

The rest of that meal was more high stress and less aware. Juice, food, plates could go anywhere.

He has lost his awareness of space, measurement, and eventually inside/outside, like inside or outside the plate or mouth, over the years, and now it is gone i think totally. Except that spoon still manages to land in or near the mouth mostly.

Time of course doesn’t exist and neither do the memories held by awareness of time.

And yet a core remains.

Today, he struggled unsteadily up out of the chair and we walked around the little room. He reached out and held me in a tentive, then close, mutually-satisfying hug, stepped back and said something that resembled “You are beautiful.”

He also a bit later, cased the room and suggested, somewhat dubiously, that the space behind the whiteboard and between the chairs might do. Gotta put on the record that he was relieved when i wrinkled my nose and turned down that nest.

Remembrance of any kind! Beautiful! I will take it! and beg people to please be careful and please slow down.

If Covid cases continue to skyrocket in exponential growth, and the hospitals fill, the odds of another total lockdown increase.

The four months when i could not see him were the worst of my life, and i almost didn’t survive it.

But he did and I did. Now, as we are slowly getting reacquainted, beyond my wildest hope given the very high level of his dementia, the Covid numbers rise, slowly, and now faster, and worse, exponentially.

Rule of thumb doubling time is 70├Ěrate of growth.

Rate of growth, says Dr Henry, is 50 per cent in 13 days. That means in 2 weeks roughly, we can expect 140% more covid cases in bc.

If we have 500 a day now, that means over 700 every day in 13 days before the end of November. If we have 600 cases now that means 840 a day in 13 days. And well over 1000 a day by mid-December.

As space runs out and staff get sick, hospitals and ICUs and care aides and the whole system is at severe risk.

It’s starting to look less like Christmas and a lot more like covid careless chickens coming home to roost.

Please stay the blazes home!

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