A year has passed, as my mother is slowly passing away…
I have been silent for a long year. Sigrun has been gradually, almost imperceptibly slipping away. At first, she started speaking more quietly, then less, and now only an occasional barely comprehensible word makes its way past her lips. Her lovely smiles are now so rare, that care managers and family celebrate when we are lucky enough to be present. For a while she seemed to be in a free fall losing weight – all the way down to 77 pounds. Then for a few months, she started eating again, gaining weight and celebrating something of an Indian Summer.
Of course, this blog’s subtitle is called “the lighter side of loss” – and I think for that very reason, I have been having a hard time writing. The joys of Sigrun have become so basic, so elemental, that it is hard to capture them in a well told story. How do you write about laying your head on your mother’s chest, just to feel her skin and recall your childhood – nuzzled against her neck? How do you capture the joy that a gentle squeeze of your hand brings?
Sigrun still makes eye contact, and I know that during her remaining time with us, there will never be a moment where I can say she is no longer here. Whether it is the questioning expression in her eyes, that tells me she is still trying to understand, or the growl with which she communicates that she wants to hold the fork herself, or simply her gentle breath that I feel as my head is barely lifted by her chest.
And so I know, that when the time comes, I will be devastated, as the last bit of rope from the losing game of tug-of-war I’ve been playing with this disease will slip through my hands, and with it my mother will be gone.
I believe that as family and care givers, we spend much time postponing our emotions and letting the management of logistics keep us distracted. Once the diagnosis of Alzheimer’s comes in, we realize, it is no longer about us, but about caring for the individual who is at the mercy of whatever area of the brain is being attacked. Yet I am also starting to understand that it is just as much about us. We who are forced to let go of our loved one bit by bit, need to grieve little by little as we experience the gradual loss, but also deeply and continuously for the whole person that is no longer with us.