I spent 2+ hours on the phone tonight with my mom. I talk to her several times every day but this was a doozy.
The conversation ranged from her crying hysterically because she was worried that something had happened to me to her thinking that Neil Patrick Harris was talking to her (from the TV) when he said (and I quote) “love shack, you’re a love, love, love shack” and pretty much everything in between.
A lot of the conversation makes no sense and the dementia continues to wash away the person that she was. She was afraid to hang up so we just kept talking until she finally fell asleep.
Walking this out with her is without a doubt the hardest thing I have ever been asked to do. I’m ill-equipped but I am trying my damnedest.
So why am I sharing this? Because I know there is someone in your world who is facing this same situation and I know how lonely a journey it is for them. And I think you can make it a little easier. Because the disease takes its sweet time — they know you’re tired of hearing about it. Even if you’re not, there’s so much of it that’s just too horrible to say out loud.
Sure, there’s the moments you choose to laugh at so you don’t cry but for the most part, you just cry because someone you love, someone you counted on, someone you leaned on — is slipping away into a world where they are afraid or angry all the time. And eventually, they just slip away completely. And all you can do is watch. And every once in awhile, give them a moment of peace.
That’s not something you can talk about over a pumpkin spice latte in the middle of Panera.
And the truth is — there’s no cure and nothing anyone says can make it any less crappy. No human being should have their life story end like this. And certainly no human being you love.
But they are and you have no choice but to gut it out with them. It’s like mourning in slow motion, over days and weeks and years. Just when you think you’ve accepted it, a glimmer of the person you love shows up in their eyes or in a weird moment of clarity then and you lose them all over again.
I’ve never felt so alone or so lonely as I do on this journey. Not because my family and friends aren’t supportive. It’s just that it’s not really a very shareable experience. You deal with it in quiet moments, in the dark of the night and when you walk out their door or hang up the phone. And then it hits you like a tsunami, leaving you wiped out in every sense of the word.
But here’s where I’m trying to get — if you have friends or family who are supporting or caring for a loved one with dementia, they do need something from you. Next time you see them — I want you to figure out a way to transfer some of your energy and love to them. Their tank is empty.
Hug them, hold them, let them rest their head on your shoulder or even just hold their hand — whatever works for you and for them. Just know that they’re running on empty and don’t know how to ask you to replenish them so they can do it again tomorrow.
If you hang on tight enough – you will give them a safe place to cry. To be silent. To let go. To feel it all or to feel nothing. Don’t wait for them to ask. Just hug the life back into them every time you see them.