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Of course it has been evident, when I looked, for years. There is a mostly silent circle of care supporting me, wrapping me with warmth. You all know who you are but tonight i want you all to know i know too, and am deeply grateful for all the love and support each of you in your own ways give me.

Social connection, an ear which seems to never tire while i rave and vent and mourn, practical advice, physical help, a shovel ready appearance from nowhere, a ready laugh at the horrific,…oh there are so many of you, held close to my heart.

And yes it takes a village to lift someone up and hold them. Not just through these dreadful events of my life and don’s life lately, but for all of us as we travel through the rapids and the calms, the tidal bores and the sunsets, we do all need each other, holding each other up and paddling like mad.

Thank you

I “know” he’s not going to get better but lately, perhaps freed of the daily – no hourly – no minute by minute – grind of caregiving, it is hitting me hard. I can hardly bear to write it, but he is not getting better and. . . I don’t think he will.

Residual tears pour down my face, after a good long session of howling into the quilts. He won’t be coming back.

I “know” all this – have known for a dozen years and wept -but still, as day by day i visit and he makes less and less of his very own sweet darling nutsy sense (which i have become used to and enjoy), the pain gathers again and again.

Loss by loss by day by day. The news I can’t share, the advice he can’t give.

Last night he had a sense that we two should be going, hit the road perhaps, although that’s a lot of words that don’t make sense to him any more. But a rather fragile walk to look outside was more than enough (as i thought) to quash that,  as he looked horrified at the dark and the lights outside.

He won’t be coming back and we’ll never hit the road again. And I can’t stand this grief.

Over and over, just as we travelled across Canada to his Madawaska river home, over and over.

After doing, I thought, very well at this new life, even managing to cook dinner for myself once or twice, and getting a lot of work done, I am suddenly trapped in wave after wave of sorrow, welling up unexpectedly, overwhelming me at inopportune times. Talking with friends is sometimes difficult.

I am haunted by the memory of my beautiful man, hunched over and lurching down the hall, calling urgently after a dark-haired caregiver who is scurrying to another patient, “Delores! Delores!”

“Hi Don,” I call, holding out my hand. He wavers, between me and the hall where the caregiver disappeared, back and forth, back and forth.

Lately it is obvious that although he is usually delighted to see me, kissing my hands joyously, he also forgets I am there and wanders off, to confuse another woman with me. This is a mercy for him if he can find comfort in that, and hopefully makes the job a little easier for the caregivers.

But it leaves me remembering our many joyous years and thinking, how did this happen? How did we end up like this? And then i realise I no longer have long dark hair. It has turned grey, as it should, in the passage of time. And all creatures must die, to make room for the young.

I am reminded of words a therapist told me: “Of course you are in grief. Your husband is dying, the long, slow, hard way, fading like the Cheshire cat.”

Just in case anyone of you, dear readers, got the mistaken impression that all is now love, hugs, and roses, i feel i should clarify. In large part for that someone like the  less experienced me for whom i really write, trying to tell what is coming down in the future for we who love people with this soul-destroying disease.

The next three days i went to see my love he was completely out of it. Babbling, hallucinating, afraid “of everything,”not sure of who i was except he felt i was safety, beloved and beautiful.

Not sure he would have even recognised music if it was played. Words meant nothing to him although at one point he asked, “Have you seen my tire?”

“Tire?”It slipped out before I grabbed the question back. Quickly recovered, “oh, the car?”

“Yes of course.” This conversation was already longer than his attention span and no longer important.

“Oh it’s in the parking lot, the brake is on and it’s all locked up.”

He nods approvingly and points at the little children running around, who only he can see.

“So where’s that other one who is supposed to be here? D…d…delores?”

“Right here. I’m Delores.”

“My wife.”

“I’m your wife.”

He looks bored and wanders off on his endless rounds. He appears to feel all the women with long dark hair (unlike my grey) are Delores. Guess that’s ok with me. Lightens the load.

The care aide who jokes and dances with him walks in and Don breaks into a huge adoring smile. And wanders off again.

“I get tired.”

“Yes you must get tired.”

“Oh how will they get here?”

By now i too am exhausted and emotionally paralysed. I hastily leave.

I was late getting to the care home for the Friday afternoon party and a friend tells me my love has been dancing for an hour non-stop. And there he is, somewhat oddly attired to the outside eye i suppose, and gaunt, determinedly stepping, stepping, lost in a world that makes sense. Music plays, you dance.

And i join him with joy that there is still this place we can meet. In the hallways, people say,  “oh look, it’s the dancers” and my love grins proudly.

This robber disease has still not stolen music. He sings the words to songs i didn’t know he knew, even though his spoken words are mostly a jumble. You just have to wait for a clearing in the fog; then he gets out a phrase or two that makes some kind of sense. Language as an abstract art.

The disease also has not changed the smell and feel of that beloved body, the rightness of a gentle kiss or holding hands. The care with which he awkwardly places his hand under mine so the chair arm does not hurt me and the stealth with which i move so that his holding me does not hurt him. The fit as we stand together, the satisfaction of walking in step.

And it has not stolen our yearning for each other. It was always like that. Where one went, the other followed. I pounded nails and carried firewood, because he was there. He learned to type and wrote fine pieces for our magazine. We worked together, as was the normal case in our farm backgrounds, and found it good.

But now each time we separate, me in relief to go back to a world which may not make great sense but does have time and language and some logic, he sadly turning back to the ward he is now accustomed to, each time we separate, a sense of great wrong overwhelms me.

And yet this separation is the only option to save myself, because so far the disease, my love’s disease, has only chewed off hunks of my soul. It has not swallowed me whole as it once threatened to do.

It is always, or almost always – except for brief respites like insanely joyous holidays, wonderful evenings with friends, or walks in the woods – with me. A bit like a mild toothache or a sore joint. You don’t pay much attention but it never goes away.

And sometimes erupts.

Today at the care home, i find him out for a walk with the recreation aide, who is clever and compassionate and indefeatably persistent in her pursuit of ways to engage her charges.

He is hunched over walking crooked, looking oh so desolate. If this was Vancouver’s Downtown Eastside, he would be judged and discarded as a druggie. Brought it on himself you know or whatever savage paradigm is in vogue these days.

But the aide points me out and after quite a bit of prompting he sees me, and grasps my face and says,”oh thank god, it’s you.”

I say “Yes, and i am so happy to see you.” We walk around a bit up and down the hall and out into the garden and wind up having lunch.

There’s a lot of things to look at and play with at lunch – spoons, napkins, cups, food, and what to do with it besides mounding it into the centre of the plate. Lunch is a full time occupation, not to mention the external factors: who is paying, can we stay here, (more  and more his ideal world features staying where he is) and, will i be staying the night? He “would be happy here” then. Somehow his smarts are at work because he is aware that he is well cared for in this place.

But me. Eventually i run away, or sometimes walk, happy to leave the hourly responsibility behind, thankful that our health system stepped in and found care for him, which IS care for me. I have been spending these many months recuperating, beating back illness and stress effects, searching for a new base. Wondering what kind of life is left for me.

I leave as i do every time, no longer choking back tears – mostly – just aware that the ghost of my love is always with me, always whispering “be careful, babe.” Always loving me much more than i have ever loved myself.

Tomorrow will be another day of mourning, one of my secret days, but tomorrow i must go to him again. A ghost of the man i chose to spend many joyous decades with, but still himself to my sorrowful eyes.

They call this “the long goodbye” but it is more like an amputation, day by day, week by week, as more of your relationship gets cut away.

Suddenly I feel funny, a little bit like the middle of a Hendrix song, all floaty and disconnected. Not really surprising. Just back from an amazing holiday, not to mention a time change and 23 hours in airports and on planes, then dumped back into “real”life. Enough to make anyone feel strange.

Tried to see my love yesterday but he was out for an ice cream run on the bus. Well yes, that is a big deal because 6 months ago they (the recreation staff at the care home) wouldn’t have tried to include him, and he would have been terrified to go.

Anyway he was off after ice cream, and i left. Not too disappointed because i had been dreading this reunion, after having been far away for 10 days on a glorious, nay grand, music and ancient stones tour to Ireland.

I had started my holiday a bit roughly, amidst people i didn’t know, overcome with regret and close to tears, imagining how my love would have jumped up to dance to the magic music. But a couple of women sat me down with kindness and common sense, and straightened me out on the need to learn to live alone. Others added a dose of friendship.

Somehow I listened and threw myself into enjoyment of this magic time. I loved being alone, the freedom of being accountable only to myself. I loved the chance to soak up the experience without caregiving. The only bathroom breaks i had to handle were my own. No need to spend an hour getting my darling ready to get on the bus. No need to hush his constant questioning.

But now. I had to go back to my sweetheart and try not to glow, I thought. Wrong. He looked at me today and stumbling over the words said, “You are getting more beautiful all the time.” How lovely, from my own heart’s desire. I thought he was looking pretty good too, although i wasn’t happy about how he was slumping over, talking to an arm of his chair when I arrived.

A wonderful care aide explained don had been shadowing him all morning and the aide had turned it into a game of hide and seek and tickles and giggles and boo! “Yeah it’s no mystery why he’s tired, now i think of it. But he only got tired about a half hour ago.”

I think again how lucky we are that the care is so good – i can’t begin to praise this staff enough – each bringing their own strengths and abilities to the job and each also adhering to the standards of care and surpassing them. They know much more about Don’s day-to-day, hour-to-hour, than i ever did – or to be honest, wanted too – with my untrained eye.

I don’t see much evidence of the previous tantrums and anger either. More and more i think living at home was just asking too much for him. Too much confusion.

I remember how he always came rushing in when i tried to talk on the phone,  and got upset when i didn’t engage with him. The concept of the telephone was gone, so why was i talking but not talking to him? Multiply that confusion by dozens of incidents a day and you have a confused and frustrated guy, ready to explode. In the care home the residents are constantly answering, speaking in the air to respond to voices from another conversation.

Anyway, to make a rambling story shorter, Don was delighted to see me, kissing my hand and then, slowly, deliberately, delicately, my mouth, and nodding, satisfied. “I am so happy you are here,” he said. “I thought and thought, long and long, about where you could be.” He paused and then asked, “Do you know where Delores is these days?”

After all this time, over a decade, all the bitter tears, all the lessons in inevitability, all the acceptance of what is, I find myself tearing around the house tonight muttering angrily to myself, “God and goddess almighty, Don, why don’t you get better?”

And I mean it until i stop in mid-tirade at the voice which answers,”He can’t.”

My heart also reminds me, “If he could, he would.”

And all my serene acceptance crumbles in another agonizing wave of grief. Again. I thought i had finished that  crazed mourning.

I was busy all day on the next issue of the magazine and took his loving self to the “party” at the care home Happy Hour – music and dancing and ginger ale (whoa he said, that stuff is strong) and chips – all of which we enjoyed as we canoodled, holding hands and touching, stroking each others’ cheeks and making silly jokes in some bilingual way.

I don’t understand much of what he says anymore, guessing only at intent, and it’s mutual. His understanding is so scant i don’t think he understands the ” party” is only upstairs from the forgetting ward. He doesn’t know he is behind 3 locked doors or that they all have the same code. On better days, he sees me pushing the buttons and says brightly, oh so that’s how it works, but he never takes it further, probably because the thought is lost as soon as it is formulated.

So now we yearn hopelessly for each other, only our mutual love crossing the great divide of dementia.

And i leave, go home, finish working, eat dinner, pretend everything is ok, – which it mostly is – and suddenly find myself sinking in quicksands of grief again.

When my father died, one wild wail i had never heard before came from my soul and my mouth, and that was that. It let him go.

This sweet agony goes on and so do my love and i.

But it occurs to me that the holiday i have anticipated for 9 months now and which is rapidly approaching might be activating some of this grief. Perhaps I was burying it and now it emerges. But what else can a person do?

Still leaving on a jet plane!!! Just a few more weeks and I’m off far away for 16 days.

Who can understand what it feels like? Maybe those with similar stories.

I go to the dementia ward – the forgetting ward – and he sees me and his face lights with joy, as it did when we first met. And my heart rises to his, in unimaginable holy beauty, as it did 36 years ago. And we are joyful for that brief  instant.

Again and again. In the forgetting ward.