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It was probably a dumb move, but i have been slowly re-engaging with dementia advocacy, feeling stronger.

So i watched “Much too young” on Knowledge TV about the caring young adult children and their parents with early dementia.

Trying to tuck mom into bed while she spirals off, in another scene, mom shouts Shut up over and over, but they don’t understand she literally means it, because just a few straight simple words work best.

And thinking about how hard it was for my guy’s adult children. When you travel with the dementia person slowly down that long appalling tunnel, i think you get acclimatised to their world, sometimes their secret meanings. You see how their core is there.

But random exposure does not give you that insight, no matter how you love each other, and although you get to keep most of your regular life, you lose that great privilege of following them down to the naked core of their being and yours.

Perhaps anyway that process is for lovers?

Kids need to go live. To caregive for this awful disease with little support or training is a nightmare, no matter your age.

It has happened again. I went out in the world to a meeting where i think i contributed my mind and my experience to discussion and problem solving.

As i came home i felt so alive, so happy to do something i love.

And then, again, the crash, the grief, anguish, the unrelenting lonliness, the horror at what has happened. It seems as soon as i leave my isolated coccoon where i can stay tightly inside my body, focussed on the day, as soon as i extend out to spaces where I used to thrive, and as soon as i feel i could still thrive, i crash back into incapacitating loss.

Feeling old, and thinking – just for a split second – oh it’s ok, now we can be a little old man and a little old woman together, we will have such fun.

And then suddenly remembering, no. Remembering too how i always scorned proudly and said, I’ll be just fine without you. And how annoying it was that he never believed me.

In some ways, the hideous thing is when consoling friends say, but you lost him long ago. Oh well yes I did, and grieved all the way.

But only the part of him that could read and write and do other stuff was lost. The inner core was there always, the connection, body to body and spirit to spirit, the deep intuitive sharing. We never lost that. He was determined to keep it, and i responded.

So now, amidst the enormous pain and grief of the world, i sit, crying my heart out for one lost man.

………………

On another note, I would like to hold a zoom memorial for him on April 16th, his birthday. Well i don’t want to at all, but i have, i think, to do it sometime, for his family and friends, and maybe as a closure for me. I thought some photos and music and readings from his writings, and then anyone who would like to speak. Please let me know if you would like to read or speak. It will be an open space.

“So is all the stuff that’s locked up in the car locked up?”

“Oh yes.”

“And it’s raining. Where is it raining from?”

“The sky!”(said brightly.)

“Oh don’t be silly” (semi-crossly).

---

 

I’ve been ruminating around, thinking that i owe it to family and friends to have our zoom memorial. (April 16th, the rest tbd.)

I had ordered seeds, bought starting soil, just didn’t have the energy or urge to get them going.

Then old colleagues phoned and got me engaged in organizing a toxics session – the work i gave up when Don needed more care.

The grief is there but more like a burden or a package i can choose to unwrap or not. Depending.

Discovered Twitter a week ago in time for a bird’s eye view of the insurrection, which was wonderful. (the view not the frightening insurgency.) The rage and hate in our land is way outside my comfort zone but clearly a failure of democracy. For me though i was suddenly engaged.

Just in time for another stupid war all the while the planet becomes unfriendly to mammal life.

Tonight i suddenly got up, got the grow lights ready, and then put Steve Earle on, (the one Sue MacVittie gave Don years ago) – the first time i’ve been able to bear listening to our music.

Danced like a mad woman to his twangy “I grew up in a military town… waiting for sky to fall” and then collapsed, thinking, whoo What just happened?

6 years ago today i took my very demented darling into long term care. Nothing can sum up the pain and heartbreak before or after.

I choke on it so i try not to think about it. Nothing i did (and oh i tried) could change the path.

Living and dying. As it has to be.

i am startled to realise it is 3 months since he left, leaving that raw agonized hole in my heart i try not to venture near.

i surprize myself by feeling ok and even well a lot of the time. Or sometimes lonely, occasionally with a flash of joy, and many times a great love for others, but completely listless at other times. Getting out of bed is a struggle because waking up has the danger of bringing it all crashing down in my head again.

I summon up the strength to do my job, or enjoy a social event. Then, repeatedly, I crumble as soon as i am alone. Not every time, but the ache in my heart demands its sacrifice and i have no idea how to appease it.

But just 3 months to adjust to losing your centre for 4 decades, your main opponent, the one who loved and trusted you all through (well, mostly except when the dementia made him super paranoid), your biggest fan, safest harbour… it is not long.

I wish i could just crawl in a hole and ignore New Year. We always treasured it. About 8 years ago (or more) he forgot – we were at Flying Debris at Zocallos, and he had no clue what was going on at midnight. Or what midnight was. He only knew the music. I kissed him, for both of us, and did so all the rest of his years.

And now i cannot do even that.

You know…. I’m not really okay so please don’t ask. It will only make me politely lie, and it won’t be the therapeutic fibs i learned to sweetly tell my demented love. It will be ashes in my mouth.

But thank you for reading – I do feel your company on this long pain-filled journey, though the haze of this long grief.

.

Not too surprisingly, he got his way again.

Now what is corporally left is nestled comfortably in a beautiful urn between the fronds of the ever-blooming Christmas cactus.

We’ll – well i – will see how it goes.

I have no idea if this is healthy or not, but it works for me. Despite my objections, i have to learn to live without him.

But i worry about visitors. Hmmm maybe not introduce them? That always used to piss him off but, now, really there are limits!

Tonight, and often, i just feel broken.

I can’t explain why. And i know millions of people (maybe everyone) go through this loss, but i feel broken often, and so tonight.

On good days (oh yes, more and more often) i get up and smile and pretend to be engaged, and even enjoy moments, or minutes, or hours talking on the phone. I have tried to set a routine for ocean or forest walks, (although my friend i hiked with and who comforted me through this hideous dementia journey died 6 months ago) leaving another emptiness.

But some days, a word, a memory, bring me crashing down to loss and loneliness and just … Broken. i can’t get out of bed, no matter how long i sleep. Bed and its dreams is better than the emptiness, when one is broken.

I keep climbing up – clambering up – out of this despair, and make it for a few hours of Normal, laughing, talking, enjoying thinking as always, truely engaged and savouring it like a drink of cool water.

But then… something unexpected pulls me back to the gaping emptiness of Broken. I hardly dare to see my well-meaning and loving friends. Some of them do think, he’s been dying and mentally gone for years, why aren’t you over it? Or ready to be with people?

That might take a great healer and a shrink to explain, but a decade and a half of trauma, physical fear, my sacrificed career changes, a deep miraculous gift of soul-to-soul union, might go a ways to explain this pain.

A month ago i had to file papers with Canada and cried all over the lovely lady’s desk when i had to swear how long we had lived together. This day it was the credit union needing papers signed. I was good at first but after an hour of paperwork, i was staring into the void, broken, again

And a few hours later, suddenly but temporarily furious. How could he leave me like this? WTF? my anger was intense and not healing, just bringing more grief.

Slowly reason returns and i know those long years of our suffering were in part because he did not want to leave, he could not bear it any more than I.

But now i alone must deal with Now, dragging my heart and mind like injured limbs, Broken.

No way to sugar-coat this. I only hope it eases and then i can enjoy life as before, but i suppose always dragging my broken heart behind, like a dead dream.

My love left this plane a week ago tomorrow. Not a surprise but still a hard thing. He fought hard against the massive stroke that took out his mid-brain and he was tended with morphine and love as he left.

As he struggled one dreadful breath after another, by a miracle from community, an indigenous healer came, and helped his spirit go free.

And gave mine great ease as well. The grief i have held for maybe 17 years of this dreadful illness, he said, Sister let go your burden, as he brushed with life giving cedar.

A door opened and now i feel like i am floating between two planes. The daily world, and the other, a much more important world. mmmmmm

So all will take time to turn into words, if that is what my – our – gift presents to be done.

But that is not what i want to write about tonight on the eve of reconciliation day, year, decade, century.

We received that great blessing of the brushing ceremony because he is Metis.

So many of the stories from his childhood- his father giving pieces of land from.their dirt poor farm, bought by selling railway ties, to those who needed, his grandfather’s story around the wood stove of thunder as a big cart across the sky, his insistence, which i greeted with disbelief that “We don’t know when our family came to Canada”, these stories tell

Of course they didn’t.

I am convinced more than ever that his enormous family “forgot” they were metis because they wanted to keep.their kids safe from the residential schools. It explains why his father was angry and against him going to school.

So much fear and pain beyond words, to lose your family, to hide your roots.

And years later in another part of Canada, so much courage and grace, to survive those years and help one lost brother go back to the light, the Creator.

Gilakas’la