Monthly Archives: August 2019

Where are we?

So since he returned from hospital, he has only really been awake for a day  about once out of four. That gorgeous smile (gorgeous to me and his caregivers) has only briefly appeared.

A couple of days ago the doctor took him off the pain killer, saying it was the most sedative of all his meds.

The first day was wonderful – up all day and smiling and laughing and being present. We danced and danced. Answering to his name. Sort of like in the hospital. “Responsive” i think is the word they use.  I ‎see his eyes are focused, although not necessarily on what i would like!

And that has continued but he has continued to fight desperately to protect himself whenever he needs care – washing, changing, clean clothes. It is all traumatic for everyone, him, the care staff, me. This is not new behaviour.

In the last few months he has developed a strategy, during this desperate fight to protect himself, of spreading his knees so the care aides can’t take his pants down. It is devastatingly funny. It is also in my opinion, brilliant. How in the midst of all this total loss of cognition did he figure that out?

I am secretly proud of him. This is the guy I picked. Not educated, no money, but so damn intelligent.

But this trauma day in day out continues and is basically disgusting. Drugs don’t help. Less drugs don’t help. He is strong and defending himself from any invasion of his body from changing shirts or socks to toileting. The care aides are sometimes hurt although not intentionally. What a way to live, in fear.

After the battle is over, he is usually fine. There are advantages to having zero memory!

But whether he will ever bounce back to his level of enjoyment of life before the pneumonia remains a big and troubling question. I am reluctant and afraid to predict.


Filed under Uncategorized


It has been 4 weeks since Don came back to the care home from the hospital.

He is… okay. Sleeping a lot which is fine because pneumonia wipes out people a quarter his age. But what is missing is his smile.

He is worse now than in the hospital in terms of happiness. His bubbly jokey nature – that which convinced me he was enjoying life despite all and should be saved to continue –  has not returned yet. He seems to have left it in the hospital, where he was quite happy, treating it all as a great adventure, after he regained consciousness.

His floor of the care home is just coming off 3 weeks shutdown for an outbreak of parainfluenza. Maybe when recreation starts again this week it will help. Right now the wing feels like it is occupied by ghosts, drifting around. It is, if i let myself think, ghastly.

I summarize the med info by saying it causes croup in the young and pneumonia in the old.

Is that what he had? No one knows and no one as far as i know is asking.

But i am. I am shaken by my lack of trust. I am hovering over the LPNs: Did you check his oxygen, did you check his chest? They oblige, but all seems fine, except his missing smile.

What we can’t check is his spirit, and i am fearful it may be broken.

I think i will try to move him to a different facility with better dementia care, but he may not make it through the waiting list.

Tomorrow i go back into the land of Island Health bureaucracy, not for a social cause, but to desperately try to give my love some ease.


1 Comment

Filed under Uncategorized