Category Archives: Uncategorized

just a note for those who know us, it was Don’s 85th birthday today. I brought chocolate cake and the whole ward got chocolatey. He was uncomprehending but pleased with all the attention. Apparently he had had the traditional cheesecake birthday celebration at lunch too. Another day with a happy guy, talking a mile a minute, making arrangements for mystery projects, but smiling and laughing to warm one’s heart.

Once again I find myself emotionally strung out and numb. I figure I have too much going on.

There is my “day job,” my life’s work of nurturing, and editing our magazine as it slowly grows to maturity.

There is the advocacy I want to do on health needs in the Valley and beyond.

There are the tiny raised beds I want to spend the summer in communion with.

And most troubling of all, there is my perpetual work as a caregiver  trying to guard my love in his few last years from the outrageous fortunes of living in a for-profit care home.

Just as we – a group of family from the dementia ward – thought we had got action from Island Health and the corporation on its neglect during a norovirus outbreak, just as a new manager was rolling up his sleeves to deal with a backlog of inaction, just as a new Director of Care was hired to address the multitude of issues which arise when staff are left to cope by themselves for 8 months, just as we all, family and staff, were looking to better days, Head Office blunders in.

They announce with no discussion or consultation with anyone local, that all staff must re-apply for a new schedule, one which supposedly provides more full time jobs. The staff, who have lives and need their personal balance, are focussed on the fewer weekends. Several have just quit.

Worse, corporate headquarters  announces a 5-week rotation from ward to ward, which for dementia care is… well, insane, and a prescription for disaster: falls, fights, resistance and over-medication, because it takes time for care staff to know each person and how to deflect with respect (because the residents may be demented but they are very intuitive), and talent, and rare incredible skill to work well with the demented.

That is why sometimes when confronted with my love in full sundowning flight, I flee! Sometimes I stagger home and go to bed for a few hours.

Tonight another wife who is a friend was there  which was comfort because the ward was all over the place. Noisy, everyone telling tales in their own crippled communication … it really was bedlam.

Fortunately the staff on tonight were seasoned and skilled. They projected calm enjoyment as they paid quick attention to each person, using different attitudes and language with each one. Not bad when you have 8 people each to care for.

These are the frontline workers we should honour.

They make my many horses seem a pleasure.

When I got there just at the end of lunch he was in the dining room, scraping and scraping away at his tiny dessert bowl. The menu said cheesecake but it looked to me like he, being on a mush diet, got jelly.

Anyway I guess it was good because he didn’t want to give it up.

“So,” he said, “Have you figured it out yet?”

“What?” I asked carefully, keeping an eye on the clock

I had an important meeting in 20 minutes and I didn’t want to trigger any reactions the staff would have to deal with when I scurried off.

“Where we are going to stay together,” he explained as if we had been working on this problem for months. “You’ll get it, I know you will sometime.”

I bounce into the ward, feeling pretty good because I had free time. He is standing in the middle of the area between the lounge and the dining area.

The look in his eye is vague and I weave up.and down in front of him, beaming energetically, until.he focuses.

“Hello,” he says, “I’m afraid I don’t know who I am.” I am a bit stunned but take a chance that what he doesn’t know is his nouns and pronouns.

“Oh well hi, I’m Delores.”

Instantly the reply comes, although a bit reflexive, “I’m Don,” but I can see he is wondering, so what?

I gulp mentally and smile and stroke his arms, “I’m your wife, …your woman.”

He relaxes and a bit of light comes into his eyes and he says, “well that’s smart, that’s good.” He strokes my fleecy and is amazed, “you are soft.”

Whereupon we wander up and down.the halls, him talking a mile a minute until, 15 minutes later I collapse upon the couch, exhausted. There ensues a lot more discussion with several other residents, none of which would work as conversation outside the ward.

Fortunately the wonderful rec people come in to sing “Irish songs” and I once again escape, head twisted, but I think intact. One more time surviving,  and remembering how it felt to live down the rabbit hole 24/7

” I want to go home. I want to take you home with me.”

Two days ago he was saying, “I could go with you ” when I left after a 2 hour visit.

Yesterday in the middle of grocery shopping I was wiping away tears remembering that is what he always said when I went off to a meeting  whether next door or far away.

And many times he did join in. He always joked that, amid all the causes, his tshirt would say, I lift heavy objects, and so he did, over and over, for our work.

I smile and laugh, and cry, inside, silent until now, when I can tell you, my blog companions and friends, tell you words i could never say if and when we meet.

Outside of my skin, acting for him, I hug and cuddle and reassure.

It has been a very long time since he verbalized so clearly, and even longer since he talked of home.

He who trekked across the land of Canada every year, loving every mosquito-infested  endless mile of it – dragging his family with him- hasn’t mentioned for a couple of years his Madawaska Valley home farm, his home river, his brothers and sisters whose names he recited, counting on his fingers lest he forget,  every morning for years as the disease progressed: “Dearl, Dalt, Eleanor, Don, Faye, Gary, Garth, Dean, Carl,  Dwight, Sharon.” They were his anchor to home.

Now as the care aides change and clean him, he holds on to me whimpering, then looks strongly into my eyes and repeats, “I want to go home.”

He has probably been thinking a long long time to formulate this – through the month-long norovirus closure that killed 2 out of 17 in his ward from resulting pneumonia, through the pending death of his best buddy on the ward, who got the virus and has now stopped eating.

Who can argue? this place is clearly unsafe and he is right to want out. The staff are trying so hard but the management- public or private –  is non-existent to support them.

I entertain wild thoughts of a health care caravan to bring him home, but that is fantasy of the worst kind. He barely recognized where we were 6 years ago, the last time we made the pilgrimage to Ontario. And so many of his generation who he loved deeply– Faye, Bert, Mac – have died.

But fantasy aside here and now, for the sake of my own life – and then thus his – I just cannot bring him home with me to “our” house. I wish with all my heart it was different and I could see another way forward to bring him home,  but I can’t.

——

Thank you for listening and witnessing. Namaste.

It has been 22 days since I have been locked out of my love’s care room.due to a vicious round of norovirus which is currently re-infecting those who have already been sick a week ago. How long these fragile souls can withstand this extra stress should be a concern to all relatives.

At first it felt like a bit of a holiday– freedom from the wrenching emotional roller coaster of anticipatory (and ever-present real) grief which is triggered less or more with every daily visit.

I suddenly had time for self care like a visit to the dentist, a call to a friend. I was ok.

But now enough is enough. I need to see him, hug him, enjoy his presence and I cannot.

Worse, there is no communication from the facility. No measures announced from Island Health to help or check on procedures at their contractor. A contractor with neither dietitian nor director of care. Who is addressing protocols?   who is ensuring consistency throughout the system? who is searching for the weak links in their sterilization methods? Are they washing the floor every day with disinfectant? I know the staff are wiping and cleaning but they are starting I suspect to feel defeated.

We who wait can only wonder, and try to figure out a lever of accountability. Anyone know a good lawyer?

Tonight I grieve and weep for a friend of my love, who has departed,  gone to the light, away from the dementia care ward at CVSV.

When I knew him he was a gentle soul, always with a crooked smile and a light in his eyes for me. In these last months he could not walk and was very ill and could hardly speak, but sometimes whisper.

In his real life, in the old days, strong, athletic, a mountain climber and so much more. That man I never had the chance to know.

Only a few weeks ago, as he and Don sat at a beautiful fiddle quilt his wife had made, Don was in sleepy distress, muttering with his eyes closed. His friend, slowly, slowly, with great concentrated effort, reached out his hand in comfort.

That is the kind and gentle soul I grieve tonight.