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Broken

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.

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The fog lifts a little

Today for the first time since my love passed, i actually truly enjoyed myself for 2 hours, with no tears, no regrets, and joy in my heart.

Yesterday i went to the beach and that too was good, but every little social outing is completely exhausting. I usually crawl into bed for an hour even after a quick trip to the store. It overwhelms. All those living bodies, each with their own complex stories, just too much.

But today was different.

My friend Linda and I met for brunch at the Wave, a hotel in the Valley which had a bluegrass jam featured.

And oh i was transported – live music! the rhythm, that lovely bluegrass twang, the banjo, guitar, bass, and the fiddle. It was magic and joyful.

My friend of over a decade looked at me and said, “I didn’t know you liked bluegrass that much” and i had to laugh as i said, I didn’t either!

I remembered how my love would be up dancing, as i so wanted to (covid rules say no). And was glad there was no need to try to explain that rule to him. It would have been a nightmare, ending in anger and tears. That is over.

It is a small start – the beginning of imagining a new life, one to be enjoyed, as in his mid stage he so wanted for me. Today for a few hours the pain lifted and there was life and joy on the other side, instead of just endurance. No need to worry about him anymore.

Right now, in this moment, before the fog lowers again, i am interested to see what happens next.

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Almost a week

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

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Looking so angelic

He is again in bed before supper but had been up all morning (bath day) until after lunch, when he was nodding off, the nurse said. The care aide said they would be sure to get him up when i came to give him supper.

Which is great if it works for him. These days it is hard to tell, but after i fuss around and hold his hand and stroke his cheeks, I always ask – are you okay? and almost always he opens an eye, semi-smiles, and says, Yes.

Today i did not want to stay until supper, and he was fine. I duck down until I am in the range of his slit of an opened eye. Sometimes i brush my hair across his face and he reacts the same as always, with a grimace and a smile.

I kiss him goodbye and see he is still lying so quietly, awake, just still, calm. So I kiss him again and tell him I will be back tomorrow. Slowly he answers, To Morrow.

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How Is Don?

They (you all! ask politely). I have been putting off this post for a long time because the answer is strange, to me and probably you who care about us, and we do thank you.

So after a few weeks of observation, – afraid to say.anything too soon – i think he is settling into his new level of disability. Which is severe..

He cannot walk or feed himself, although he remembers and relishes the motions.

He knows his name and stupidly I realised just Monday that he meant me when he said something like “delish.” For weeks i did not get it.

Duh.

What else? He still can direct the food and decide if it is good or not or if he wants more.

He has looked for several weeks like what i call Don Buddha – totally still, calm, listening to his ipod if it is on or not.

And he still clearly enjoys it (tearful blessings to the care home staff who give this to him )

But for a few weeks now he is more alert, tallking a lot, although i do not always/often understand and he does not remember 15 seconds to the next.

Nonetheless there are stiill remnants of function and memory.

And he is fine seemingly enjoying life as he has it.

And i am focussing on learning the same.

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Still learning

He is clearly still learning and as he does, so do I.

I already told you how he directs his food. He has gotten even more creative with his tongue, extended to be fed. Sometimes flicking it in and out, making me laugh while he says, come!

I remember crying joyfully to the LPN about 2 months ago, “He knows the word Open!” and so he did and does, reliably opening his mouth for food. LPN wasn’t much impressed, probably seeing the bigger picture of inevitable decline and hoping i wasn’t buying into false hope.

But I was impressed, because he had shown no awareness of the ability to understand words in the few months before. No, not thinking there was any miraculous long term “hope” but fascinated by the resiliency of the brain to learn.

Tonight he was totally jittery, babbling, grabbing. We talked and i sang (!) love songs and hugged him and stroked and hugged him and gradually he quieted, and centred on us.

But not totally. When the food came, I handed him a spoon, since he had been how-do-I-say? imaginary scraping the table and putting his fingers in his mouth, approving of the results.

So i thought he would enjoy the spoon, while i delivered real life food to that eager tongue.

I handed him one spoon and so fast i could not process, the spoon was hurled forcefully to the floor ahead of him. A chilling reminder that dementia is dangerous in its unpredictability.

Thinking about it, i remember he has been disturbed by that corner, with a dark chair lift stored there, for months.

Was it a temporory fit, or an attempt to fend off the thing in the corner? I will never know, and long term care is not equipped to problem- solve on this microlevel.

i am untrained and uneducated, but i know him. I could maybe do this level of problem-solving, but there is no time no space. Covid does not help. And dementia does, to be honest, make it all a bit of a crap shoot.

Anyway, today as i gave him juice, and he was very thirsty, he grabbed my wrist and perfectly directed the glass to his eager mounth. He would not let go, but let me take it away so he would swallow.

He is still learning, as he deals with each stage of disability, now horrific, but he keeps on coping as he can.

I see. I witness.

I will do my best to keep company with this beautiful human, as i have on this very long journey – a road trip we never planned.

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Still himself

So tonight i went in to feed him, as he now needs all the time, a change, startling to me because it seemed so sudden. But i remember even 3 years ago being surprised that sometimes he could not feed himself.

I guess i just chose not to see. Now, although he remembers the motion of hand to mouth, and uses fingers often to do so, the delivery is so uncertain we need to pop the food in.

We are in a different world now. He still is aware enough to direct the food and drink when offered: come; more; yes. Sometimes as with minced boiled cabbage tonight, no! (don’t blame him, it was dreadful in my non- demented opinion. Not quite as bad as the pureed chicken and mostly dumplings passing as the protein component a week ago, but well… gross.) Anyway he is still aware enough to say No.

Almost of all the food i offer is accepted eagerly, but sometimes he is so busy eating and talking and not really swallowing that he coughs and coughs and gets very angry and scared.

So tonight, after he calmed down a bit, he had a question and called out on his right to Dearl (his older brother) then looked me, Dearorl… then forgot.

Minutes later as we ate more, he looked at me and said, Elnor?

Oh, I said, knowing this was his dear older sister who raised him as toddler, who he always wanted to see on trips home. Oh, i said, assertively and i hoped bafflegab reassuringly, Elnor is in Napanee.

NO! He pointed at my chest. Here!

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How are you?

We all ask this question, carefully, probing. Many of us have dealt with death during this hugless time. The silent heart-wails of loneliness must by now reach the heavens.

Some people have become bitter, or hang on to.the denialist equivalent of temper trantrums in a child. Some of us adopt the be of good cheer and carry on attitude.

We in our caregiving sisterhood do neither. We are already so used to suffering that COVID makes it worse, but is just one more addition to what we carry and what we have witnessed about love, greed, and relentless tragedy.

The same for me. COVID is just another layering on to a decade and a half of caregiving grief.

I am very happy with my life and work, to be clear. I laugh and smile and love the fresh breeze, the rain, the sun and green shoots. I wish i could live only and forever in that pleasant, priveleged state of mind.

But underneath it all, the life i am continuimg for myself – the friendships, the projects, the achievements – there is the inevitable on-going cheerful caregiving – no longer walks, now spoon-feeding while my love flits in and out of the present.

So I dread mornings, when i have to.emerge from.great healing dreams and enter one more day of the same reality.

I feel, to.be honest, like a mostly happy optimistic person, who has been daily crying – even though I’m not! – for a hundred years.

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Whispers

He talks so constantly and quietly and randomly, that no matter how hard i listen, i can make little sense. Sometimes he shouts out urgently for people, “Sam!” , “Jim”, ” mary” but i know not these people he is calling to, i suspect for help.

We were in his room today, much quieter than the common area. He always relaxes in the quiet areas because all that random noise keeps him on edge.

Over and over when having supper I have seen him answer “What?” to noise from other people in the big common room. How exhausting!

But today we were in his – half – room.with just a couple of care aides chatting and laughing in the hall.

After about half an hour of cozying, we were in our zone and he was doing pretty good with the feet, (note- major conceptual feat for a guy whose brain is just not working. ) He was moving his wheelchair enough that several.times i had to retreat so my leg didn’t get squashed. Been bashed already a few times by that chair.

No matter.

After enough time, and it does take time, he felt good, although of course totally uncentred in time or space or sense, but pretty happy I think. He sang several lovely songs, pausing to do so amid all the words i did not understand.

So i wanted to go.out to talk to the care aides for a moment, and hugged him and said i will be right back.

As I scurried the 30 feet away, i clearly heard him say, “Take me with you.”

And when i returned to his room, he had slowly moved the chair about 5 feet.

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Hmm

He no longer walks and so , slowly loads of clothes, some rags, some very good, come home.

I sort through them, kind of, what is good enough for the thrift store, what is just rags…and i slowly try them on… and wow a lot of those pants and pjs etc, they fit well enough especially for around the house (and what else is there these days? ) Sometimes I even see my hemming on pants – those stitches mine.

And so, they fit.

Could be sick or nostaligic but I think it’s not. It’s just that I’m wearing the big guy pants now for us and all our connections and creations, and care and finances…, Continue reading

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