“I love you to the bottom of my heart and that will never change, BUT,” sternly, gesturing around the careroom, “I really don’t think all this is necessary.”
I grinned to myself, reminded of my mother. In her eighties, she was devastated by a severe stroke with total left neglect. My dad moved them both into a private nursing home so he could stay with her, in the misguided belief that he could help her learn to walk again. And she ranted, “I Just don’t know why your father insists on spending all this money on this fancy hotel!”She had some spicey comments about the service at the “restaurant” too, when one of the care aides tried to feed her. “I have never seen anyone so rude. We’ll never go back to that restaurant,” she fumed, as dad pushed her wheelchair down the hall.
Our discussion trails off into nonsense and non sequitur, including another serious interlude: “I’m worried. I’m worried about our kids. Don’t you think you should give them something to eat? See,” pointing to a small lady across the hall, “there’s one of them now.”
I gulp, wavering between explaining for the third time in the hour that the kids are so grown up they are about to start drawing their pensions, or ignoring the issue altogether.
Inspiration strikes and I say, “well we’re having dinner at five o’clock. Do you think they can wait til then?”
“Ah, five o’clock sure that’s good, that’s great!” and my love’s injured mind wanders off into another stream of consciousness.
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?
Yeah. There should be a word for someone who is no longer themselves (not physically, none of us are teens forever!) with a fatal illness but not dead. Or a word for those of us bereaved this way. The experts – folks who write books – talk about anticipatory grief or disenfranchised grief because the loved one hasn’t died yet.
But what’s the word? What’s the special status? For him or for me?
Revenue Canada has most kindly invented a status for the money of “Involuntary Separation” which helps with part of the issue. So far i have refused to accept that because I can’t bear to acknowledge it. My heart cannot bear it.
Nonetheless we, the partners, both of us, and probably all the people grieving and caregiving their parents with this fatal dementia which wreeks havoc with the person before the body – we need a word, a social status to explain our state.
Do other cultures have a word?
All this is in part brought on because i can’t go see my estranged love right now due to flu at the facility. My yearning and grief has overcome me, but it is still the grief of separation, as if one of us was on a trip, or we had been quarreling, as we often did. Not really true as a feeling, because even when I can go back and hug him and hold him, whether he remembers me or not, we are separated by much more than a temporary factor.
What’s the status? What’s the word? This might continue for years. I am not single or widowed. He is most definitely not dead. I hope he is still getting music to dance to.
Words would help. Any one? Any culture?