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“Oh that is boodiful,” he says stammering but fervently, on hearing certain music or touching colours and fabrics, or, once in awhile, touching my face.

Sometimes he stops in the middle of our time together, when he has been trusting me and responding, and asks, ” But who are you?”

And we have another moment of joy or grace.

I know his judgment when more able-minded, on seeing himself now would be that he should not be living this. “Take me out behind the barn and shoot me,”  he said when confronted with evidence of the devastation that this disease would bring.

But now, he is mostly happy, especially since now they let him lie in bed as long as he wants. When he does get up, mostly driven by hunger, sometimes coaxed by a caregiver (one does this trick of waving a banana under his nose!), he needs a good wash and a change of clothes, and then he is ready to eat and dance and explore a new world.

And appreciate the boodiful.





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The Penny Drops

A couple of days later, he was safely tucked on the couch with a blanket, snoozing after lunch, almost as I had left him, so that is good.

But there is a back story behind this Saga of the Falls in the Dining Room which I have written about repeatedly lately  , along with the issue of whether being strapped in a wheelchair was a good solution. I woke up at 5 this am, thinking, Oh! That’s bizarre.

But where to start?

Perhaps where I left off yesterday. The truth sometimes requires a look at details.

Don had been at lunch, which is served from 12 to 12.30 at the latest. Usually 12.20. When I got there at 1.45, he was sitting sadly alone in the dining area, scraping away at his empty meal plate.

What I realised this morning was, that to help him up, I had a bit of a tough time to push and pull the table and his chair apart so he could stand.  Then he was afraid to go into the lounge area, saying “I’m not allowed in there.” And when he got to the couch, promptly fell asleep, even snoring.

This is a for-profit care home contracted by Island Health to look after our elderly and ailing. The chain, Retirement Concepts, was bought by Anbang, a Chinese investment company, in a sale approved by the federal govt.

The assets of Anbang are now administered by the Chinese government while its chairman lingers in prison for fraud. Billions in assets are for sale.

This particular care home, Comox Valley Seniors Village, has been running without a Director of Care for 2 months and without a General Manager for many more. There is no visible management on the site to hear concerns.

I have talked repeatedly to the LPNs and the occasional RN who are supervising the care aides. Apparently residents in this Special Care ward are not supposed to be left alone when eating, for obvious reasons. And I have asked again and again that he be offered the option of a nap after lunch if he was up early in the morning. My concerns were documented and sent to management (or somewhere?) according to the nursing staff.

The care aides on that day were 2 casuals and one regular.

The rest of the penny dropped this morning, when I remembered one of the care aides mentioning that Don had been up and wandering away during lunch. (Mealtimes in this ward can be hilarious: just as staff get one resident seated, another wanders off.)

Probably not so funny for care aides who deal with this constantly.

So someone pushed the chair and table so tightly together that wandering off was impossible. And then he was left there in the empty room for well over an hour after the meal was over.

Unauthorized use of restraint? Sure seems like it to me.

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The problem is better but clearly not solved.

Sitting in the lunch room alone about quarter to 2. Sleepy and dazed.

About 10 minutes later, after we moved to the couch.


Afterwards I learned that he had been up since about 10 this morning, so it was time for a nap. If i had known i would have taken him to his room, if I could get staff to unlock the door.

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Joy in my heart

It may be too early to rejoice but tonight I am.

It has been an interesting week. No falls, and a guy no more cognescent of his surroundings, no more able to recognize people, but still brighter eyed, more present.

I attribute this to a team, each contributing with his well being at heart.

The nurses and LPNs are now on regular shifts, so they know him, and suggested cutting his older heritage meds, since he hasn’t been dangerous and paranoid lately.

Our family doctor immediately agreed.

The care aides suggested he was tripping on his shoes and suggested removing them at least for now. They also became vigilant about letting him sleep in – sometimes til after lunch- or else coaxing him to nap in the afternoon.

The rec staff know their dancer well and are ensuring he gets stimulation. Today another resident’s wife brought in a marvelous quilt, decorated with sensual and visual variety, from ribbons and buttons to lace. He remained engrossed, stroking and feeling and folding for over an hour.

And we his family in town – his son and daughter in law and me – also share the load of visiting everyday at the danger time after lunch, observing and asking questions. Showing how very much we cared about his care.

It all seems to be adding up to a guy who is more calm and less stricken as this disease weaves its deadly way.


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Time to write, time to act

Got to the care home about 2.30, expecting to find him somewhere in the scheduled concert in the next ward. But the rec staff said they tried but he was sleeping.

I went in to the ward anyway, just kind of hoping to sit with him awhile. Didn’t realize they meant sleeping in the dining room.

To my surprise he was standing, in the semi dark, wavering, wavering, his eyes kind of closed, saying “I don’t know, I don’t know” with his buddy, another guy in the ward, weaving in and out around him.

Seriously an invitation for … a fall for one or both of them.

First step was to get some … cognition? awareness? buy in?

After a few passes, literally,  he sort of opened his eyes and saw or felt me and held me in a long close hug, eyes still closed, saying “oh thank god you’re here.”

Then he was off again. Asleep on his feet. Gone away. I tried  to entice him to come with me but he no longer knew me and stood stubbornly; I understood him be saying that the chair he was grabbing was what he wanted,  “I will be fine here.” His safety.

It took a while and  an aweful lot of sweet talk but eventually step by step by negotiated step I got him into his room. And with a slight bit more effort into bed. About 5 minutes later he was snoring and sleeping still 4 hours later as I write this.

The quality of care is mostly excellent, and the casual care staff who helped was totally excellent but this was an accident averted because I was there at the right time.

I can’t always be there. Accidents will always happen, especially with dementia – the journey into the great unknown – but sometimes they can be averted. That is, as I see it, surely the care home’s job.



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Another fall

About two weeks ago Don fell. It was in the dining room, after lunch, and he cut his eyebrow and scrapped his forehead. I guess the blood was impressive, but head wounds do bleed a lot.  Doc came ( the joy of a good family doctor, you are not alone in these events) and applied a zillion Steri-strips, hoping to avoid the trauma of stitches.

To everyone’s surprise, the bandages remained on long enough to start the healing, and it worked.

There has been a pattern of him being left in the dining area for hours after lunch, sleeping upright in his chair.

“Oh he’s fine,” says one care aide when I protest. To be fair, When they do put him to bed for an afternoon nap like we often had at home, he often gets up again. But for some reason this means they don’t have to try. I personally suspect they don’t want to interrupt their afternoon end of shift sit-and-gossip sessions with “useless” work.

I suspect that was the situation, and when, mostly asleep, eyes closed as is his habit, he staggered up, he got entangled in chair and table legs and went down.

I can’t prove this and no one is talking. But — hmmmmm – ever since, he has snoozed after lunch in a soft chair by the window. Coinincidence?

A couple of days ago I moved him to the one couch in the ward so we could sit together. After about 15 minutes of assorted talking – to creatures in the air, to the wheelchair next to us – he opened his eyes. “Oh!” he said. “oh…. you’re… you’re my person!”

The other day the next shift noticed he was so tired, they put him to bed at 3.30 and he slept until 9.


In any event this time he slide off the chair to the rug, no harm done. But as the nurse said, sadly, he continues to be at risk.

And I continue to refuse to tie him down in a chair like the victim of a medieval bedlam.

This is the Chinese-owned private care home contracted by BC public health to care for our aged elderly. It has been running without a general manager, and without a director of care, for over a month. The quality of care is now entirely dependent on the staff themselves and they are of course mostly doing fantastic caring work.

Nonetheless there is no access to higher levels of training or expertise to problem-solve issues such as this one we face. Who knows what other families are also dealing with?

I wonder at what point Island Health becomes liable for inadequately supervised care?

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Luck is relative

I am watching a programme on organ transplants. A suffering family is told that their beautiful son was brain dead in 20 minutes, and I find myself screaming enviously at them all as they grieve, “You are so fucking lucky!”

They don’t have to watch their love’s brain dying year by year month by month, while he no longer knows what is happening. My love struggles gamely on but the confusion is almost universal and the moments of joy are dampened by the dullness in his eyes.

Death is our part to play in life. Fair enough – but this is slow-drip torture.


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