Thinking back I realise so many things. I can no longer really trace the progression of the disease. For sure, behaviours i assigned as obstinacy or character quirks or failings, some of those I see now as the beginning of the disease manifesting: the clever little inventions for latches or ramps -no need for the hardware store – which he always delighted in, became absurd constructions so elaborate they didn’t work. I remember being exasperated, arguing, “You don’t need to be so complicated. Just put the board here and a nail, and it will work,” and the response was usually him stomping off in frustration.
But as the situation was unveiled, and as i devoured everything i could about dementia and about caring for those with dementia, my attitude changed. In the end, i shut up a lot of the time and it seems to me in retrospect that the disease stripped layers of ego and artifice from both of us.
As a result, we became even closer, more trusting. It seems to me we became stripped down to our essence, naked of artifice because he was no longer capable and i was emotionally exhausted. I don’t count the therapeutic fibbing i became so good at. That was done with no malice.
When we meet now, it is that pure essence which remains and grabs joy in each other’s presence.
I remember when we met 35 years ago, I thought man and woman (in our case – i expect any love is the same) existed to learn the path of unifying with Other, which is our mortal rehearsal for the Great Mystery. Why else such bizarre sexual arrangements! Why such searing agony and overwhelming joy? Why such contentment in simple acts – planting seeds, cooking supper.
But having come that far, now we are stuck in a great grieving birthpang to learn more of the path. The great pain of glory or the bitter inevitable fruit of love?