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“Anticipatory Grief” Is A Miserable, Underappreciated Epidemic

I want to believe that worrying about the future is basically pointless, just a one-way ticket to unhappiness. To reduce anxiety and promote calm, we must practice mindfulness instead, focusing on the here and now with gratitude.

But, for almost a year, my relatively near future contained the death of my father, and it was mostly impossible for me to stop thinking about it. After nearly 10 months spent considering the impending situation (which just came to pass two weeks ago), I’ve certainly learned a few things.

Bottom line: So-called “anticipatory grief” is not a weird edge case. Anticipatory grief is core grief. Anticipatory grief is only becoming more common. And it will mess you up.

Last May, dad jumped in his car to go buy a few groceries, suffered a seizure on the way, and got taken by ambulance to the ER where they did an MRI and found something. The diagnosis: glioblastoma, an aggressive and incurable form of brain cancer.

The “standard of care” treatment is immediate tumor “debulking,” but they basically never get all of that fibrous fingered mess and it’s more or less bound to come back. Follow up the brain surgery with some vitality-sucking chemo and radiation, whose side effects can be as bad (or worse) as the previous effects of the tumor itself.

My dad never returned home from that ill-fated grocery trip. He moved from the hospital straight into an assisted living facility, and from there to a hospice.

Needless to say, this out-of-the-blue diagnosis shocked me. At first, I couldn’t sleep, I drank copiously, I phoned it in while parenting, I was completely stricken with grief. But dad wasn’t dead yet. In fact, he was quite peppy thanks to the steroids and excitement.

I traveled from Brooklyn to Georgia 13 times in those 10 post-diagnosis months just to visit him. Despite ongoing and mounting health challenges, I could still hug him, talk to him, send him a text message, look him in the eye.

To the uninitiated, grief may seem like a linear thing: you lose someone, then you grieve. It’s bad until it gets better, and better still (with maybe a blip on special occasions like birthdays or anniversaries). I didn’t realize how wrong this unspoken assumption was until my dad got sick.

As Atul Gawande explains in his much-loved Being Mortal, modern medicine has created a large class of people whose end-of-life trajectories are prolonged instead of steep and quick. (This is not a good or bad thing per se, but it does present hard tradeoffs). As such, anticipatory grief isn’t just the province of a few unlucky Alzheimer’s patients’ families.

Now, it seems like everyone eventually gets cancer, and everyone’s cancer gets treated. Stroke patients often live to see another day, if from rehab. Heart broken? Try a pacemaker. Doctors’ bags are full of tricks (of highly variable quality). So, anticipatory grief is not really that rare, and it’s only becoming more common. Everyone’s stuck mixing up her own custom blend of hope vs. resignation.

Unfortunately, explanations of “anticipatory grief” tend to make it sound like you’re grieving in advance of a loss, i.e. improperly, since the loss hasn’t happened yet. On the contrary, anyone who finds himself in an “anticipatory grief” scenario has already lost a great deal: a sense of security, plans you didn’t even realize you had, and so on.

The big and obvious loss of a person is lived in a thousand tiny losses. Many of those can announce themselves well before any final breaths have been drawn.

Though loss is bad almost by definition, anticipatory grief presents its own lesser-known challenges. Maybe it’s better to have some time to tie up loose ends with your loved one, to enjoy each other. That’s right, this situation is a blessing in disguise! But wow, what an enormous amount of pressure to face during an already-trying time. Just “enjoy each other.” Yeah.

How often should you visit? How many possible “last one” visits will you get? Do you wear dark colors or bright colors, what do you say? Does it make sense to spring for the organic bananas for someone with incurable cancer? Maybe all the fatigued patient can do is sit in front of daytime television — is this really how this story ends? Can’t one of you muster something profound to say? Maybe not.

Plus, there’s no guarantee that your grief will line up with anyone else’s. Your co-bereaved family members and friends could easily have a “good” anticipatory grief day when you’re having a “bad” one, and vice versa. This is all massively complicated by the continued existence of the patient herself.

As the patient, the loss-to-be, processes the seriousness of the situation, her needs reign supreme while yours remain peripheral. The patient wants to look on the bright side today? Buck up! She’s down in the dumps? Time to figure out what might help. Whatever you do, don’t forget to pull the rug over your big festering wound, because it’s not your turn to be cared for yet.

I don’t have answers, only questions. No one in my family did anything wrong. How can we balance the interests of the maybe-dying or the kind-of-slowly-dying with the needs of the probably-still-living? What does that look like? Can everyone get exactly what they need? Maybe not.

No wonder that the forthcoming death sometimes starts to seem like it might become a relief to those left behind. Of course, regular grief still lies ahead. It will chew you up and spit you out. I’ve recently graduated to this stage. But the in-between is pretty horrendous too.

Anticipatory grief is grief purgatory, but you’re waiting to go to hell instead of to heaven.