I know a thing or two about sudden loss. I have lost grandparents and a friend out of the blue and it hurt like a bandaid ripped off of tender, unhealed skin, taking with it part of my heart. I am less familiar with incremental loss, watching a loved one slip away slowly over an excruciatingly long time, physically more or less fine but mentally losing connection with reality.
Not knowing what to expect is heartbreaking. Will today be the day she forgets me? Will this be the last time she knows me? Was that our last conversation as grandmother and grandchild before she looks at me blankly without a flicker of recognition? You try to landmark the progression based on what clinicians have prepared you to expect but sometimes things accelerate unexpectedly and you thought you knew where you were on this journey but you don’t, you’re lost, and you don’t know where you’re going next and nobody knows.
The trouble is, you think you have time, like Buddha said. The truth is we don’t always, but dementia is a beast that brings the urgency of that reality to the forefront. With the busyness of life it’s easy to lose track, to decide to call another day because there’s just too much to do and you know they will understand. And they do. But when you know things are being unremembered every day, there’s so much guilt in the decision not to pick up the phone. Did I miss my last chance? Or do we still have tomorrow?
Nothing is promised to anyone but the process of watching a loved one’s life disassembling in their memories until there are just meaningless blocks that don’t fit together anymore underscores this unkind fact. I don’t know if a day will come when she doesn’t know my name; I pray it never does. I feel like I’m losing her piece by piece and it hurts, but I don’t want her to lose me too. I don’t want to be forgotten like milk on a shopping list left on the counter by mistake.
I want to still mean something because she means so much to me. I’m not ready for any of this, but dementia never stopped to ask. Dementia doesn’t care you’re not ready. Dementia doesn’t care about anyone. Dementia is just a stupid disease that steals things right from under your nose: relationships, memories, things that were and things that now never will be. Dementia will progress whether I’m ready or not and all I can do is hang onto her as tightly as I hope she will hold onto the memory of me. Tomorrow isn’t promised, I just hope she remembers me.