Ambiguous

Not long ago, in one of those impromptu deep discussion with a teenager that you don’t see coming, my 13-year-old said “everyone acts like nothing has happened to us.”

The 13-year-old in question is known to be prone to exaggeration and fiction. When he was in pre-K, for instance, he’d regularly come home and regale me with stories about how the teacher had taken him for a haircut that day, or to McDonald’s, leaving the rest of the kids back in the classroom to fend for themselves.

This was such a pronounced character trait that I took to calling him the novelist behind his back. (Sorry not sorry, kid.)

Nine or so years later, he still insists things that didn’t happen did happen sometimes. But, in this case, he wasn’t wrong.

We’ve been watching his father decline due to Parkinson’s since 2016. It’s reputed to be a slow-moving disease. But that was not our experience. Physical decline happened fast, as did dementia, which affects a large percentage of people with this disease. Anyone who thinks it’s just a tremor has swallowed the Michael J. Fox Kool Aid.

The physical decline was heartbreaking and scary to watch. The mental one was, as well, but it was also more complicated.

Dementia isn’t absolute. Or at least not in the coming on phase. The person is there, but not. Same, but different. Looks like the person you know, but isn’t. It’s gaslighting extraordinaire.

And that’s the subtle stuff. There’s also the uglier side, the sundowning, the tempers. And, as you might imagine, there’s complicated feelings toward the person exhibiting these symptoms. Is it them, or the disease? Does it matter? Can you not be angry if someone didn’t mean it or couldn’t help it?

These were salient questions for all of us.

It happened slowly and then fast, and the kids, because I worked full time, needed to work full time, were often alone with the situation. Eventually there were aides to buffer the asks, the demands, the temper. But they weren’t there around the clock.

My kids went through a lot. So did I. The rest of the world, even those in the know, were mostly oblivious to just how awful it was. The pandemic isolation also complicated this phase. Let me just say, there was no cozy knitting, no glad-we-all-have-some-down-time together, stuff happening in my family unit during lockdown.

The fact that no one saw what we were going through, when they should have, and when we were all in lock down, made it hard for us to register and process, too.

There’s a name for what we’ve experienced. I’ve written about it before, in the context of sibling loss. It’s called ambiguous loss. It’s a concept named by a psychologist named Pauline Boss to describe losses that are not literal deaths and thus are not acknowledged as losses. Soldiers lost in war whose fates are never known. People who are literally swallowed by Alzheimer’s or dementia.

Though the survivors of these losses have most definitely lost a person, not to mention a family structure and way of life, society does not recognize it as a loss. Ritual and support are reserved for death. That leaves survivors of ambiguous loss to muddle along, confused, frozen, with their emotions unprocessed, trying to make sense of the loss that is not called a loss and the way their lives are and are not the same.

I wrote about it in the context of sibling loss because bereft siblings, to those in the know, are often called “the forgotten mourners.” People see the loss of a child in family, regardless of the age, as the parents’ loss. Surviving siblings are often greeted with phrases like “you have to be strong for your parents, they’re going through a lot” and “how’s your mother?”

As a result, siblings are trained to think the loss is not theirs, and get stuck in their grief. I’ve heard from senior citizens, after they’ve read my book, who have realized for the first time that the loss has happened to them, too. Better late than never, I guess. But frozen grief is awful and disabling. It’s years lost. It’s sad.

Ambiguous loss feels exactly the way my son described it. No one registers it as a loss, so you can’t, either. You do what’s expected of you. You soldier on as if nothing has happened.

As a coping skill, ignoring things only tends to only work so long. It has an expiration date. In our case, we’re dealing with the fall out now.

What pains me is that I know this. I’ve even talked about it with my kids, in passing. But I didn’t do the things that should have been done, like outright naming it as a loss when it was happening, and when Paul finally exited the home and entered facility.

I guess I was too in it to be also managing it. But listening to my kids, seeing them trying to pull it together now as school and life demands of kids their age, I am pained that I did not see it, did not act on it more definitively, sooner.

While everyone takes off their masks, and ostensibly rejoins life, my kids are gamely trying to rejoin life with the relief expected of them, getting back to “normal.” But there’s not a normal to get back to. Not for us. Or not yet. We are getting there, though it often does feel as if we exist on an invisible island, slogging through on our own.

I’m writing this as a PSA, really, for those who might be experiencing this, to name it for them—ambiguous loss--and to those who see it around them, and might be able to do someone a solid by naming it for them.

I think it falls into the category of if you see something, say something.

I’ve written about grief and loss a ton in the context of my brother’s death. And yet, I couldn’t spare my kids or myself this one, somehow.

It’s humbling.