Survivor's guilt

It’s a hard post to write, a hard topic to try to explain—what it’s like not being a primary caregiver for my mom. I have been on both sides of it—one where I halted my life, moved back home, did what I could to participate—and then the other, where I realized that I needed space for myself, separate from the larger care circle that had formed around my mother.

This is a luxury not everyone has. There are so many I’ve met along the way who had no choice but to leave school or careers, states and relationships, to care for a parent (or in some instances, parents) who ended up with Alz. I’ve had support and options in so many ways where others had none. This makes me feel incredibly guilty, and selfish, like who am I to sit here and talk about the heartache of this disease?

I know it’s not about that, that this community is not about that, but it’s hard not to think about, not to carry that Survivor’s Guilt. And not just with other young(er) people whose parents have Alz, but also with my family. Especially now, as I’m getting older. Before the argument of me needing to establish myself and my career made more sense, but I feel like I should be doing more.

I’m working towards sorting out what that means, but it’s a struggle. With a lot of different people involved in my mom’s current care situation, many (most?) of them with strong personalities, it’s hard to know where my place is. Beyond that, I admit I still want to be able to live my life, maintain some independence,

Things are much different now than they were then—we can no longer try to pretend around her disease and how it’s advanced. Before I felt more like an enabler than a caretaker, trapped between The World That Was and The World That Was Unfolding. But we’re so removed from that now, all quietly resigned to the fact that things will never be the same. Now it’s just trying to help manage the ship to keep things running, with my mom as comfortable as possible, doing what we can to keep each other sane.

I wonder if anyone else out there’s experiencing this, and what you’ve done to overcome it? Conversely, anyone out there who is the dedicated primary caretaker who thinks this sounds like whiny dribble?