CaringCV

2 years out….

To be honest and non-dramatic, it is slowly getting better — many more days with no tears.

Often though, much more often, just kinda getting through the day the week the year, and wondering, “So this is normal life? why am i taking up space on this crowded planet?”

And sometimes a few words, a memory, a tv show, pierce even this boring facade.

He worried a lot about what would happen to me and i would laugh and say, Oh i will be very sad, but i had a life before you, dude!

Didn’t quite work out that way — he knew me better than i did with all my bluster.

Often my dreams show him floating in and out, usually with a building project, but unlike real life we never fight – and maybe all our earth life fights were on the surface?

Because in my dreams i have no ego or ambition, and he too is simply there with me, floating in this strange ambience – it is very strange.

But in the daylight, i stagger on, often eeking enjoyment from great days, good adventures, interesting projects. Sometimes even forget anything but the moment.

But the beauty of music still makes me cry, i don’t know why.

But I do know for sure that when i laugh too much, when i have a great time with friends, when i have free space, a day or two later, it hits.

The stories from war in Ukraine, in Gaza, seeing those people in their loving heartbreak, a phrase, a story, a drama about love and sacrifice —- out-of-nowhere any and all trigger this pain, this twisting of the helpless heart. As tonight.

Sometimes when i wake from thosecdreams where we are floating together i wish this could be the afterlife after all? Maybe if i just let go a bit more, i could join him again?

Beyond the safe encompassing feel of his body, even when his mind was gone, there was a peace, a mind meld – that is what i miss and why i am so very lonely.

Goodnight my friends and thanks for reading – talk to you another day.

Tonight two years ago my love died, i think in peace, but my heart still hurts unbelievably. I kissed him and said, Farewell my love, and left. He knew – in the last stages – but i suspect he knew. I suspect, perhaps romantically, he would not leave while i was there. It was the last thing i could give him and me, freedom to go.

But it is not that easy, it turns out.

As time goes on i see more and more how he supported me and understood me beyond my bluff denial.

Okay dude, I never admitted it to you – that would be giving up my power – but you knew more about me than anyone else. And loved me anyway: “God knows I love you babe, but….”

I thought i was toughened by years of grief, dealing with dementia. Thought the End would be easy in comparison.

Little did i know how lonely i would be, without you challenging me, calling my bluff, often painfully. Now no one really knows me.

Other caregivers cautioned me, but i discounted – thinking i had suffered enough. Turns out grief isn’t like that. You don’t just pay your ration of grief and get HomeFree.

And so i sit tonight, grieving. Let this grief be witness.

After a great affirming and invigorating afternoon with a friend and guide, and well yeah, a couple of beverages, got up and turned on the cd player for the first time in at least 7 years.

Have been afraid of the pain music opens in my heart. Can’t explain but we danced together all the way through this dementia until the last oooh 6 months or less when he could no longer stand. So for some reason music, any kind of music, made me cry.

But tonight feeling stronger, I thought why not! i yearn for the beats and sounds and poetry in the music of the last 40 years 😎

So i slowly turned on the cd player. (oh i know ooooooolllld tech) but wow it worked like a decade ago – grabbed the 1st cd to hand – Steve Earle a gift from Susan MacVittie – and then whoooo ! me crazy dancing!

And no tears. Going to take this slowish but the first time i danced to music or even listened to it without crying in many years.

I found this very helpful — i have been feeling guillty and also tbh being guilted by friends who want me up and about again and even demand it (as in oh good he’s finally dead, let’s move on. Am i being mean — or accurate?)

But it’s like groping for solid ground in shifting sand and i just can’t do it. This post is helping me: https://www.intuitivehealingnyc.com/blog/2022/1/23/how-grief-impacts-our-social-spheres

Not sure if you are allowed (ugh barf) to feel this way 1 and a half years after death, but i do.

Been putting up a good smoke screen and keeping our small non profit watershedsentinel.ca running, and running well, no year of mourning for me! but my heart is running on empty and nourishing memories

It is just over a year and five months since Don went to the light. The fog of grief and trauma is receding, slowly, although sometimes washing or roaring back up like a high tide, and then it slowly laps away again, for a day or a week.

It is, I think, probably going to be survivable. That was, I suspect, seriously in doubt at times.

Anyway, looking back, of course there are so many memories i cherish. I am pretty sure i test my friends’ patience telling these stories, although they deny it. To be honest, i don’t really care – i can tell them to myself just as well. And some really are zingers, others are just fond and lonely recall, a way of keeping him near me.

But looking way way back, i am recalling how, long before he started cutting boards short, long before the doctors, he started with these weird jokes. He would pretend he had forgot something – my name, what meal we were having, who his sons were, whether we were planting potatoes or tomatoes.

There was always a somewhat comical twist to these little jokes, but there was also always a very intent examination of my reaction, to see if i thought it was funny.

It was clearly so important to him that i always laughed or smiled, even long after he really HAD forgotten, during the time – a few years – of denial he went through.

Thinking back, i realise he was checking, testing, trying to use his intelligence for a self-assessment.

Later when it got worse, he would use that same intelligence to tell our friends (probably over and over! but i figured they could handle it for 10 minutes during my 24 hour caregiving day) that he had Alzheimers. I asked why and he said, “Because you see, when i get so bad that I need help, they will know what is wrong and help me.”

And people did their best.

What i learned from Donald Archie Malcolm, over 40 years:

There were lessons about love, in our case between man and woman, and the hurt and joy of giving up ego into a bond. There was the painful depth of understanding over the decades, the fights, the persistence. Never would i have believed, the first time i stormed out, that there was so much more understanding to come.

I learned better but that is not what i want to write about tonight.

The two of us took off after saving about half our gross salary in oh 3 years. He had paid mortgages, car payments etc for his family, but now we were free to try.

I remember talking to my aged father about my surprise at the layers of love and understanding i was discovering. He was looking after my stroke-stricken mother in a private care facility. And he answered, yes darling there is so much more. I did not, to be honest, believe him.

We headed north and built a cabin on beautiful land in the Hazelton area. And then we learned this was different than urban BC. It was an education in action for both of us to realize this land was indigenous land. It was ironic because after many years of hiding, his family was remembering the Cree grandmother.

Later of course i realised this canada land is all indigenous land, as is every land, but we newcomers do not have to be enemies.

Tonight i want to talk about homesteading in the 20th century. He knew how to build a cabin, had worked for skilled house builders.

Knew framing, roofing, mixing concrete, rudimentary skills, but plumbing and wiring were beyond his back country experience. And soon we went off to another dream adenture- as lighthouse keepers – which paid cash.

Nonetheless we started again on an island in the north of the salish sea. And between those two situations, i learned skills i had only heard talked about by my parents, from prairie farm backgrounds, 1920s to 1940s.

I learned how to build a cold box in the spring on the side of the hill. We put milk and cheese in there.

I learned to cook dinner early when the sunlight would disappear at 3 in the winter and you had to save your kerosene or candles.

I learned to cook, wash dishes, wash myself, wash clothes, and use that water for the garden on less than 15 litres a day (sure don’t do it now but yes it is possible!)

I learned to cook and even can food on a woodstove. And how to feed that woodstove. It took me longer to learn to use a woodstove than it took to get my graduate degree. All the different woods and when to use what for what heat at what timing. It is actually quite precise.

I already knew how to sew and knit and mend and darn, but this took it to the next level. All by hand, because we had no electricity. I even proudly made rag rugs, which i had read about in books. They were not well made and didn’t last long, but better then spending a few dollars at the store.

I learned how to ice fish with a line and some corn, i learned to shoo off bears with a tea towel, I learned the northern lights were glorious.

I learned the land is your friend but really it is not great to clear a wetland for a mini-farm.

I learned rural people can be very hard, or very kind, to newcomers.

I learned how to survive, at least partly, already coded into me by my parents’ backgrounds. I learned it takes observation of your surroundings, a whole lot of very very hard work, courage, and a whack of stick-to-it. And relationships to sustain you.

This learning is in my bones. It was in my man’s bones, and my grandparents’ bones.

And undoubtedly all our ancestors. We all come from the land. Our ancestors all learned these skills.

d

I always wanted my man to die first. Yes, awful but… hear me.

I knew if i died he would be devastated and I thought i was stronger to handle this ripping apart better. Also decades ago, i kinda thought i could be the merry widow but as time went on and we grew closer and older i knew i would be left adrift too.

By then though i had lost my mother and father, so i felt confident that i could survive this loss too.

Now i don’t know. A friend told me the second year is worse. I can’t really compare the scale but i gotta say this is bad.

I think some of it is a kind of delayed ptsd or whatever — images keep flashing into my mind of when he was paranoid and held me scared “how many of my children did you eat?”

And then the joy the love – even in the depths of dementia when we were truly souls meeting beyond the screens we usually put up to secure our inner being.

Right now, I think he was right when, years after he went into long term care, he announced with rare lucidity, “I’ve been thinking, and i think we should die together.”

But i try to forget when we first got a semi gentle diagnosis and he was skipping across the lawn afterwards, and said, “What is wrong with you? all the joy has gone out of you.”

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.

A program i was watching played “Walk me out in the morning dew” which has always been powerful to me.

I did not know until right now that it was about nuclear holocaust written in 1962 by a canadian.

But i have always related to the tragedy…

And suddenly a dam burst (again) after months of doing “great” – i kind of have too because dear people’s pay checks rely on me. Trying to fix that…

Anyway the grief was probably additive – my deep loss and trauma in my own life first, then the loss of so much, the battle for species and the earth, all lost now. OH YES they are, humanity at least in north america is giving up the earth for imaginary money. Go team homo not-so-sapiens.

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.