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22 days

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?

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For DJ

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.

 

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Intuition

I have great belief in what I call the “back of my head.” Often when I thought i was struggling with a life decision, on looking back I realise steps taken, which prepared the way,  reveal the “back of my head” already knew what I was going to wake one morning and suddenly decide.

In my 30s I started running  a fever every evening from  8 PM to 8.30. I am not one for doctoring – had way too much of that as a helpless kid – so usually I would never run to the doc. But this symptom was so specific I figured there might be a clear cut answer, so off I went.

She looked perplexed and to my disappointment said, no, I know of nothing that would cause that. She ordered some tests and looked up and asked  when did you last have a pap test? Of course, the answer was basically never, and before I knew it I was flipped on my back getting The Procedure.

Well one thing led to another, the cancer shute I call it, each test more grave, and finally,  with some drama, much meditation and self-examination in face of potential death, along with a serious hemorrhage along the way, I wound up cured.

And wiser, with a deep belief that the back of my head was looking after me.

I saw another doctor listen too, when, as she was about to treat me for a dislocated shoulder, she looked into my eyes, stopped, and sent me instead on the 2 hour journey to hospital for an xray. The ache from the now healed break in my upper arm reminds me of that moment, and I am thankful.

And last week i was visiting Don as he lay in bed at 2 PM. “Oh,”he said, looking at my silvered hair, “Your wings are beautiful.”

He eventually got up, driven by hunger. While he gobbled lunch, I picked up a tough bit he had spit out. Usually I don’t worry much about hygiene between us, focusing on sterilizing my hands on the way in and the way out of the ward. But this time something niggled, and I went to wash my hands that extra time.

The next day the facility went into “lock down” as Don and most of the residents, and the long-suffering staff, struggled with a wave of norovirus.

I am so far fine, and more convinced than ever that the whispering intuition at the back of my head knows way more than the babbling I.

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Videos for dementia caregivers

Supported by the Victoria Hospitals Foundation and produced by Island Health, this series of videos for dementia caregivers covers a range of topics to help those caring for a loved one living with dementia. Extensive and useful. Video series

It is of course all so you can keep your loved one at home, which is pretty much necessary since there is little relief in sight on the residential care bed front. Still, I could have used these vids during the long and lonely years….

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New beds old games

So the politicians came today, all shiny and smiley in their new suits, to announce 150 “new” long term care beds for the Comox Valley. Many of us wept at home afterwards, because the big contract went to yet another for profit elder care home chain,  “a good company,” enthused Minister Dix, who is not so great an actor as he thinks.

This in a valley where one care home is already under the control of the Chinese government due to events stemming from the corporate necessity to maximize profits. The board of directors of any company is not legally allowed to do otherwise, no matter how “good.”

Even more depressing, the Minister insisted these were “new beds” blithely and happily ignoring the fact that most of those beds, when built in 2 or 3 years, will be swiftly filled by the overflow waiting in the new acute care hospital, which has been overfilled since it opened.  It is planning disaster but no accountability in sight.

“I was in Abbotsford yesterday,” he gushed, “and their  hospital was at 120% capacity.” Not exactly sure how that does anything except reinforce the need for more long term care everywhere, but he seemed to think that changed the subject.

 

(Someone should do an audit on the plain old financial cost of all this nonsense, never mind the lost years, the lost lives of all this neglect and health care chaos. It must add up to hundreds of millions which could have given us the care we need.)

Another 30 of the 150 exciting new beds in the Comox Valley are basically  a book keeping move, because they already exist as “temporary” beds and are full.

It is all such a stupid old game, sweep into town like a feudal lord and announce great news – hey you get an extra ration on alternate fridays! smile for the camera you ingrates – which barely stanches the bleeding social wounds, and then denounce realists as those who just always reject good news.

Tonight I am sad and exhausted. And so tired. Tired of dealing with the lack of adequate care management at the foreign-owned care home in the Comox Valley. The licensing officer receives complaints almost every week – not from me – and nothing happens, nothing changes.

Tired of the struggle to save others from this dreadful waste of the last years of their lives on this sweet earth. Tired of looking for a drop of truth or sincerity in this pathetic democracy.

It is just a shell game and our lives as we work, and worse as we age, are the pawns to be conned and then thrown away.

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Strange?

Since around December 22 or earlier he has been sleeping up to 20 hours a day. Not too long ago.he had a pattern of taking long sleeps about every 10 days or so for a couple of days but lately it has been everyday. Kind of strange, concerning.

Sometimes he is just lieing in bed, snoozing with his eyes part open part rolled up (very creepy looking), talking and hallucinating away amiably.

“Are you hungry?”

“oh yes very hungry”

“Then let’s get up and get lunch.”

“No.”

Stalemate. No one seems to.understand this situation. The care aides say, ask the nurse

The nurses are asking the doctor.

In the meantime I am.preparing to spend a lot more time with him in his room, if that is where  he wants to be.

 

 

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Sleep sleep

Today like a few days ago he slept all night and until at least 2 this afternoon. He fluttered his eyes and muttered at me but said emphatically that he was not hungry. I stayed a few minutes and opened the curtains… but he remained safely ensconced in his sleep.

I left, and as soon as I was able to be alone, spent an hour or two grieving… for he is surely leaving. On his own time, in his own way, as it should be — but oh! it hurts.

Why? I miss him as he used to be when we tore around the back country, eating trout and having great adventures.

I miss his arms around me as he pretended to be brave ( oh yes I knew but it didn”t change the comfort). I miss his endless confidence in me, even as he tore up and down the cabin swearing because I had disappointed him in some incomprehensible-to-me way.

I grieve the man I have only truly come to know as he has been stripped of mindful abilities. This man is the one I wish I had always known, both of us with no more bluster, no pretences, artifice exhausted, just us alone with bare and raw souls.

Oh over the years and multitude of angst-filled fights, we got a lot of the way there, which is surely the object of every human interaction. I remember how when we met I began to believe the reason for sex was that we in our god-like existence had to learn to love the Other. And sex ( just the icing on the cake he said once when I was ill) was the learning tool…to help us.

And now he is happily and peacefully sleeping away. The timing, weeks, month, years, is up to him.

My gift now must be to let him go. And I think he will know if I am not ready. But he is so tired now he sleeps and sleeps.

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