Note: I want to thank every single one of you for the words of encouragement, either in the comments below, via Twitter, Facebook or email. It's been an immense comfort to know we aren't alone in this. Today was a better day after an insane weekend. But it could all explode again within the next few hours. The reality of this sickness is hard to bear and almost impossible to comprehend. I can only hope none of us will walk that path. Again, a HUGE thank you.
Frank Lorenz shared the following poem with me on FB. I thought I'd pass it along:
I’m tired. Profoundly, profoundly tired. For months—years really—my sister and I have been dealing with our mother’s slow, unrelenting descent into the darkness of Alzheimer’s. It sounds heroic but it isn’t. Believe me. It’s a personal hell that brings out the worst of who we are, no matter how hard we try to help and do what’s right. Our own private apocalypse.
The woman who raised us no longer exists. It’s a terrible thing to say but there it is. I have friends in similar situations but in every single case it’s about loss of memory, insecurity, confusion—a terrible and cruel fate, always. But our mother is also full of hate, something we never even knew existed. And she’s chosen to focus her entire bile and paranoia towards the only two people trying to help her through this: her two kids.We are thieves, we are plotting, we are ingrates to be striked off her will; we are conspiring to break her, stealing kitchen utensils in the night, her phone book.... Anything. We're fools, we're morons, we're insane. She can call 10 times a day, filling our voice mail if we're not home—with insults and accusations or suddenly, a cry for help. But when we call back to offer it... The same loop begins all over again. These days she's threatening to call the police. Eventually she calms down but it never lasts. There is no end, no resolution, no discussion possible. And that's what so hard to accept about this disease: the realization that no amount of logic or comforting has any impact whatsoever on the person you wish to help. She is incapable of comprehending anything outside of her own fabricated reality. She doesn't even hear it. It's all a monologue. A dark psychopathic monologue bouncing off the walls of her own echo chamber.
And of course, no one understands how she can still be living at home, all by herself. Because it makes no sense. None. We know this, everyone does, and we've been trying for over a year to make her accept the truth—doctors, nurses, caregivers... She's held her ground, stubborn as ever, fighting everyone tooth and nail. But this week we've reached a tipping point and it'll be out of her hands soon... It'll come down to the very conclusion we worked so hard to avoid. Because we have to, because we've done all we could do to try and preserve this way of life she clings to so violently, even in the face of anger and fear and profound sadness. Anything to prevent change.
Now change will come.
It is inescapable.
I know this is all highly personal and I probably shouldn't be writing about it publicly. But it helps. And right now, I honestly need anything that helps.
So I'll look to the sky this weekend—not for answers, because answers won't come. I'll look up for light and air, for beauty however insignificant.
I'll look up to catch my breath.