This post might get a little personal, just so you’re warned.
First, let me start by saying I fucking hate Alzheimer’s. I mean: as design flaws go, it’s a pretty big one. So, of course, are dementia, Huntingdon’s, ALS, you know: destructive, degenerative shit like that. Not cool.
As you may know from previous posts, my mother suffers from Alzheimer’s and has recently been admitted to a care facility because taking care of her at home became impossible. Trust me, it’s one of the hardest decisions we’ve ever had to take in our lives. We didn’t want to give her care and living situation over to someone else, but we had to.
So now I visit my mother at her care home, and as much as the Alzheimer’s is already taking her away from us, this seems to have removed her just one step further. She is now entering the stage where her recognizing me is a rare occurrence, and conversation with her has become nearly impossible. She sees a person sitting with her, but speaks to me on the basis of what is going on inside her head, which has some link to reality, but not much. My being there might trigger a memory, or an emotion, but it’s not me she’s talking to.
My mother’s residing in a care home has done something else besides make us miss her more than we already did – and missing someone who is still with you is incredibly hard and disorienting and a bit of a mind fuck. Now that she doesn’t live at home with my dad anymore, I am suddenly being hit hard with anticipatory grief. It’s like this step has pushed me over the threshold into a stage of processing that I think I probably should have already been in.
Usually, I deal with difficult things by learning as much about what’s going on as possible. I’ve tried doing that here too. Turns out, that doesn’t quite work as advertised in the case of watching someone in rapid mental decline. I try to understand what mom is going through, how things must be for her, and my head is spinning. It’s not just that I can’t – how could I with my (ostensibly) healthy brain? It’s that the emotional charge that comes with not only trying to understand her but also coming to grips with everything that now follows as she heads into these last stages of her disease is pulling the rug out from underneath me. I literally can’t pull this process apart into separate pieces for analysis. It’s all tied up together, and every so often I feel like I’ll be buried underneath it all.
Then, when I’ve almost drowned in it all, I’m forced to accept that I can’t do anything about what’s happening to her, and I can only go and see her and know that I love her, even if she can’t know anymore that I do. I can try to be there for my dad, who is going through the same thing but probably more so. I can try to be there for my sister, and for all the people who care about my mom and who hate this disease that is taking her from us, in little bits and sometimes in massive chunks, ejecting shards that cut us all with tiny painful jabs and lacerations.
In light of all this, I write when I can – or rather, when I must – and I hope that somehow my putting this on the page will help other people in similar circumstances know they are not alone, however much that may help, and I truly hope it does.