“Don’t you understand? If I can’t dance I will die!” he pleaded one Monday night when he wanted to go downtown, not understanding Monday or that there was no dancing downtown on Monday nights.
Now, he can’t or won’t or doesn’t walk, i am told and i see on our covid-rationed visits.
Despite all these years, this feels very sudden and i have been avoiding writing this update on the hope it would pass, as so often before he has dipped and then bounced part way back.
His sense of humour is diminishing too.
But so far no bounce back, not yet. Even so, after a rather nasty supper, while he spilled food everywhere and alternated between feriously rejecting my spoon and then eagerly gulping down the offering, even during that rather unhappy supper, when he bumped me accidentally he turned and said, “oh, I’m sorry.”
And over and over for the last month he has told me, “I’m scared.” He is calling out for his mother, his big sister Eleanor and brother Dearl. Even Dearl’s long dead wife Glenora. No one but me would know who he is calling.
And i am scared too. I have been grieving and caring for a decade and a half, and i do not know how much more I can survive.
And then I pull my head out of my bubble and remember all the anguish of my sisters from Ward 1F and of all of us around the world, ensemble. It pulls me out of the grief spiral but it doesn’t change my endless shock and grief.
Every stage of this disease brings grief, and then, again, another grief, like a slow drip. A torture, alone in one’s mind and memory. This misery does not love company.
The disease has stolen my best friend, sneakily, piece by piece, no matter how hard we both fought against it, over 15 years, and it is not finished yet.
I have grieved every loss, and in the early days, he did too. Sometimes he raved, and sometimes we grieved together.
Now I grieve alone, and try to comfort him. “Don’t be scared. I.will be with you.”
He doesn’t understand the words but seems a bit comforted by my caress.
CaringCV 