Today

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.

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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.

Hmmmmmm.

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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Tonight

The music had already started when I got there after a couple of hard days’ work. He was sitting securely in the front, with no real expression in his face. No real recognition either. A bowl of ice cream was devoured in globs, and then I coaxed him up to dance. Never had to do that before.

Occasionally a big smile would cross his face and once when i did a twirl away he quickly grabbed my hand and gathered me into an embrace, saying, “Don’t leave me.”

The singer played “Can I have this dance for the rest of my.life,” and to.my embarrassment in the middle of the special care ward full of folks having a good time, I was suddenly brushing away tears.

They got chased away by a few fast dance tunes, and Happy Hour at the care home was over.

“Come with me,” I said. By now he was happy and agreed. “Where will we stay?” I suggested supper was coming soon and he thought that was good but on the way back to his ward he asked, “will we stay together tonight? where will we sleep?”

Somewhat later, a little unquiet, he held me and stammered, “Forget me.”

I don’t know if he meant: don’t forget me; or forget me. He sometimes thinks long and hard to deliver messages in the rare moments when the clouds clear a bit. But I hugged him and assured him I would never forget him, and, although there was confusion his eyes, it seemed to be good.

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Lucky man?

I get in on a rainy Saturday afternoon, after a stretch pruning last year’s raspberries, feeling pretty good.

I have new zelcrow closing shoes for him – he’s been wearing them for years and likes them, takes them on and off at will, not necessarily to the joy of the care staff.

To my surprise he was up and fairly … amiable. He had no idea what shoes or new shoes were, but sat down and let me make the switch, talking a mile a minute.

But in that strange way, not as out of it as he seems. At one point my hand collided with his, whereupon we had the full scale collapse, leaning back in the chair moaning, eyes closed but zero anguish on his face. I laughed and called him a great actor and he sat up immediately and said, “well, yes!”

Such a confusing state of mind.

I also brought his ipod and popped the headset on to play Robert Plant Band of Joy, one of our old favourites.

He said oh that is so beautiful, and started to dance. We played the whole CD and he was joyous.

Me I had to be very stern with myself not to get dragged into grief remembering all the times we listened and danced…Music mostly makes me cry now.

After awhile he leaned over and asked demandingly, “But Who are you?”

I started out with my name but it was ringing no bells, so I said, “I’m your wife.”

“Really? I never heard of any of that.”

I smiled my hardest. “Well here I am. Aren’t you a lucky man!”

And the smile crept into his eyes and he agreed.

Later he took the headphones off and pulled my hand to his ear to hear the music that way.

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