Tonight a light story from …oh 8 or 10 or 12 years ago… one that still makes me laugh.
We had a plot at the co-operative Anderton Gardens near Comox – a magical space i highly recommend – although for some reason my love buddy never took to it wholeheartedly.
One day we went to watch the extraction of honey by the bee keeper there. I thought that might interest my bear and it did. We bought a jar or two that i gave him to hold.
Then, wanting to go see our plot which was probably 500 feet away, and knowing that getting don up and moving in the right direction would be a major chore, I asked *S* who happened to be there, to keep an eye on him. She was leading the dementia caregiver support group i went to at the time, and i knew she knew what to do.
I slipped away for 10 minutes stolen peace with the plants.
Next thing i knew he was hobbling, furious, up the path, clutching his honey and his walking stick. S trailed behind, somewhat apologetically because she knew how precious those moments were, but guiding him.
At that time we had no home support, no respite, it was all on me 24/7 …
“You are too careless with me!” he shouted and accused, very indignantly. “I didn’t know where you were!”
I tried to pour water on the fire. Oh Yeah.
“But I knew where you were, with S and she is our friend who would always look after you.”
The embers glowed for hours after we made a hasty retreat to our apartment. I felt bad for S but there was no time for conversation. Getting him out of there was the best option to avoid the full volcanic eruption.
Looking back, still chuckling, because he was so very indignant and it was so funny, i understand now finally that he was already much more impaired than i realised.
I needed time and space to not feel personally more imprisoned before i could hear. He wasn’t being selfish or stupid or possessive. He just didn’t know where we were and he was terrified.
The story of the dementia caregiver: Your person has already gone 3 or 4 more steps ahead of your comprehension into that long travail. And when you get a chance to look back, after time passes and maybe you get to catch your breath, you see.
“You are too careless with me!”
I didn’t know how bad it already was for him, because i held him steady in our daily life and did not understand how much i was doing. I did call myself his guide dog, but did not understand the depth.
In that angonished bad moment 10 or some years ago, he told me. I did not know how to hear.
Later, in one of the many care workshops, i wrote a message to myself for the future: “Listen to Don, he will tell you what’s going on.”
Eventually i could do it no more, and he was placed into care which is another whole exhausting story. But better than him shadowing me, albeit happily, all around the house.
Oh i had limits! i made him sit on the bed watching the bathroom door until i came out. Which reminds me of all the times he burst in while i showered, “Are you alright? i didn’t know where you were.”
Listening is harder now because of the Covid lockdown. And because he is much more away from me as the disease progresses and i have not been able to follow day by day.
(Talk about an epidemic by the way. Dementia qualifies.)
It might be a mixed blessing because i know the end of this long and twisted tale is inevitable. It might be good for my health to have more enforced distance.
But of course, i worry. If he had enough mind left to think about it what would he have to say?
The other words that echo and sting are ones from about 3 years ago in a rare moment of clarity.
“Oh i don’t mind staying here, it’s ok, so long (stern emphatic look) as you visit every day.”
And now covid cases rise again and i think, Oh my love, we have all been too careless with you.