Author Archives: delores663

The little loving things

A year and a month after he died (mercifully) I am doing okay. Today felt great for several hours, like really great, and then… the oven door handle fell off. And the same screw seemed to hold the whole darn door together – don’t start me on crappy cheap cost-cutting design.

Gasp. now what? Plans. 1) fix it myself 2) call long-suffering son-in-law 3) call repair shop

I could see the screw still sticking in the other layers of the door, so first step, would it screw back in? but of course all the tools i had available were the wrong head (30,000 curses on all the folks who have fun designing different screw heads for appliances … umm make that 300,000,000)

So i was pissed and non-plussed until i remembered, What about the screwdriver my love gave me once, “Here maybe this will help you fit your computer connections.” I scurry off to the office room and retrieve the tool, And it fits! Door fixed.

Maybe in a few years such events will bring happy gratitude, maybe. Tonight, after such a good day in recovery mood, grief does not describe the tearing pain.

It might be stupid but that’s how it is, clawing my way back to some semblance of life after these hard years.

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A Year

There is really not much to say, maybe because to be honest, i try not to think about the devastation of the last years of our life together.

I sure could, and on bad days do, wallow in the trauma, the agony, the horror, the loss, the grief which still underlies so much of my comprehension of the human world now.

If i were a soldier – and maybe all caregivers are, paid or not, fighting this tidal wave of dementia – I know i would be recognised to be with PTSD, for what it’s worth. No matter. No help for what happened anyway.

Except maybe it would help if society, friends, co-workers, all recognised that this is what we, all of us, have travelled through. Cure? for what? reality?

No way you can lie in your bed terrified night after night in case he – your most intimate trusted person – thinks you’re a intruder (sometimes acts on that) and not be damaged. No way you can face this madness, and dearly love the person, day after day, and not be damaged.

The disease was the intruder, and a tidal wave that swept away our lives.

But tonight, a year after he breathed his last, i am also remembering the great times, as I often do. We did have a great totally fabulous time together. Laughter and closeness and adventures. So much. And, yes, earth-shaking arguments.

As he got sicker and sicker, and then in the care home, we got much closer, both stripped of ego and identity. Just us. And we still knew each other until the end.

I can only hope our spirits meet again.

Until then, i am slowly picking up involvement and enjoyment in daily life, although i have to confess it all seems to me privately like a shadow-show now. It was like this once when i recovered from cancer. But this time I have to play (and often enjoy) my parts.

But I do still miss that extremely aggravating person, my own beautiful man. I guess I always will.

I won’t say, Rest in peace. I will repeat what i whispered as he died.

I will be with you soon enough. Time means nothing to you now, so wait, while i live out, maybe even enjoy, this petty bit of life still given to me. I will be there and we will go to the stars together. I promise.

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To be clear

Things are going better. The paperwork hangs on – i did his last taxes but just can’t seem to remember to mail the papers.

There wasn’t much so i hope that is all proceeding well. There should be a social service or help for those who.have lost their life partners – everything is hard but some agency could make it easier by helping.

But for me i still get emotional whiplash. Thought i was over the worst and doing surprisingly well, although doing well seems mostly to be presenting a brave happy face to the world.

But tabling for the watershed sentinel at a community event on Sunday … well, i enjoyed it, loved the company, and thought finally! i was ok. I knew i have gotten emotional whiplash each time before, but i thought this time, months later, i had finally swum out of that drowning pool.

And then the backlash. Tonight i remembered how he would always carry the boxes for me, i never had to worry about that hassle.

Then i touched his urn, and it was cold, he would have been complaining.

And again the future looks bleak and empty and i am so alone with only my memories and heartbreak for company.

Better, but not ok, not yet. Hiding it better, but still broken.

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Weird day

I chose a weird day to file long overdue papers – car, new license, makes me sad, remembering all the glorious trips the old one saw us through – and house. This day was supposed to be the memorial zoom, which i copped out of. And glad i did. It was hard enough to know it was his birthday, and the memories do flood.

But what i remember today is Don and his reaction to the Ukrainian side of my roots. I think we all take that part of our family heritage for granted, but also until recently, we have not talked much about it.

But one year early on, Don was adament we should go to Saskatchewan to see my mother’s family. It was the right thing to do, so, me reluctant, we went.

He loved it all, baba, uncles, cousins, sweet smart Uncle Dan, but most of all, well it’s not really noble, but the food! All the competitive visiting from aunt to aunt: “What did she feed you? Try this, mine is better.”

The aunts signalled tacit approval by gifting us with tea towels and such, but most importantly, a quilt for a queen bed! That quilt is on my bed even now and still makes me happy.

Uncle Dan tucked more and more food into our tiny car, Annie sent fabulous flax seed bread, and then we were away, back to my beloved coast.

As we left, Uncle Dan took advantage of a private moment to hug me and murmer “You, you keep this one, he is a Man.” Not a sentiment i would dispute, for sure.

The thing is, i had felt from the time i was a pre-teen that Uncle Dan was my idea of a man. My mom’s idea of entertaining family when they came to Ottawa was to send me as guide on an exhausting tour of the sites.

We did Parliament – a building i love mostly for the fossils encased in its stone walls – we went to the mint. The other tourists ohhed and ahhed at the view of coins cascading down from wherever. Dan moved quietly in the background and murmered, “You can’t take it with you.” This was in sync with my nascent radical spirit.

But it was the visit to Eddys Papermill that confirmed my elevated view of Dan. God knows why my mom thought a visit to a papermill would be fun – take my word, it’s not! Aunt Annie by then was staggering on her heels, all dressed up to see the capital, and Dan, without a word, took her heavy purse and carried it for the rest of the day.

Maybe that doesn’t sound like a big deal now. But in the late 50s, early 60s, it was. This man who “broke land” for a farm, logging the required 5 acres by hand, not allowed to sell the logs (“what are you supposed to do, eat the sons of bitches?” he groaned once telling us), this tough man made nothing of carrying his wife’s purse. And he approved of my man.

Going to see my Ukrainian family was a wonderful thing to do and i have always rejoiced that i shared that with my man.

Slava Ukraini!

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Can’t do it

So for anyone who reads this blog and made a note in their calendar, there will NOT be a memorial zoom for my love on April 16. I can’t do it. A friend asked, when i expressed anguish, “Who are you doing this for?” and i blurted without thinking, “Not me!”

And so, having dedicated a decade (well add 5 or 10 years) to loving and caring as my sweetheart’s dementia got worse, i can see no reason to anguish over a memorial done for other people, mostly absent people.

Others who were on this dreadful journey with us — maybe a small dinner of memories together on the 16th or whenever works? … contact me – you know who you are. Those who are far away, may you be still and peaceful.

We all pass to the light, and his passing was as good as those around him could make it – gislakasla to Nola and Dennis and James, and Kelly, and also Doug and Terry who helped so much afterwards.

Nope. Reclaiming what very little of my life remains starts now. Of course if others want to organise, i will attend (even paid zoom for a large attendance already) but Nope. I’ve done more than my share of caring and crying and being torn into bits. I am exhausted. Your turn if it matters. Send me an invit!

I will be putting up a memorial web page attached to this blog, where you can post comments and memories and photos. Hope to have that up very soon and hope to read and see and cherish your thoughts there.

In the meanwhile, be peaceful and loving. The world of humans is full of turmoil, but our dead are thankfully at peace.

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Adult children

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.

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Again

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.

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Conversations

“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).


 

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Something strange

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?

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just a note

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.

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