Monthly Archives: March 2022

It was probably a dumb move, but i have been slowly re-engaging with dementia advocacy, feeling stronger.

So i watched “Much too young” on Knowledge TV about the caring young adult children and their parents with early dementia.

Trying to tuck mom into bed while she spirals off, in another scene, mom shouts Shut up over and over, but they don’t understand she literally means it, because just a few straight simple words work best.

And thinking about how hard it was for my guy’s adult children. When you travel with the dementia person slowly down that long appalling tunnel, i think you get acclimatised to their world, sometimes their secret meanings. You see how their core is there.

But random exposure does not give you that insight, no matter how you love each other, and although you get to keep most of your regular life, you lose that great privilege of following them down to the naked core of their being and yours.

Perhaps anyway that process is for lovers?

Kids need to go live. To caregive for this awful disease with little support or training is a nightmare, no matter your age.

It has happened again. I went out in the world to a meeting where i think i contributed my mind and my experience to discussion and problem solving.

As i came home i felt so alive, so happy to do something i love.

And then, again, the crash, the grief, anguish, the unrelenting lonliness, the horror at what has happened. It seems as soon as i leave my isolated coccoon where i can stay tightly inside my body, focussed on the day, as soon as i extend out to spaces where I used to thrive, and as soon as i feel i could still thrive, i crash back into incapacitating loss.

Feeling old, and thinking – just for a split second – oh it’s ok, now we can be a little old man and a little old woman together, we will have such fun.

And then suddenly remembering, no. Remembering too how i always scorned proudly and said, I’ll be just fine without you. And how annoying it was that he never believed me.

In some ways, the hideous thing is when consoling friends say, but you lost him long ago. Oh well yes I did, and grieved all the way.

But only the part of him that could read and write and do other stuff was lost. The inner core was there always, the connection, body to body and spirit to spirit, the deep intuitive sharing. We never lost that. He was determined to keep it, and i responded.

So now, amidst the enormous pain and grief of the world, i sit, crying my heart out for one lost man.

………………

On another note, I would like to hold a zoom memorial for him on April 16th, his birthday. Well i don’t want to at all, but i have, i think, to do it sometime, for his family and friends, and maybe as a closure for me. I thought some photos and music and readings from his writings, and then anyone who would like to speak. Please let me know if you would like to read or speak. It will be an open space.