Chapter 1

Adjusting to Your Loved One’s Terminal Diagnosis

The most painful thing to experience is not defeat but regret.

-Leo Buscaglia

That Other DOD: Date of Diagnosis

It’s not just the Date of Death that rocks your world when someone you love is terminally ill. Grief does not start with death—not when you get advanced warning that it’s on its way. It starts the moment you learn there is no fixing the thing that’s killing your spouse. The way you imagined the rest of your life, planned for it, dreamed of it . . . all of that changes in an instant.

As difficult as it is, talking about things when you know death is approaching really matters.

How you come to grips with this together as a couple is what will prepare you both for what’s coming. And in order to manage your grief, there’s no hiding from it.

When Casper began to experience frequent choking from her worsening condition, she immediately told me there would be no feeding tubes, no hydration. Similarly, in the course of her career as a nurse, Linda had performed CPR on people with end-stage terminal diseases. She wanted none of that. They both wanted to see family. To say goodbye to our kids. To talk about their fears. To say thank you. And then, when it was time, to go as peacefully as possible.

You have to face what’s happening—together—to make that possible.

I’ve seen families in hospice who don’t want to talk about what’s happening or even to tell their dying loved one that they are dying. It was not for me to say they had to do things differently, but in these cases, being unwilling to talk about what was happening left these people unable to say goodbye. What’s more, the dying person did not get to decide for themselves what their end of life would be like. I saw time and again how this inevitably led to conflicts among family members about feeding tubes, CPR, medications, etc. All of this strife during an already painful time is so unnecessary.

Dying people know they are sick. They should be able to tell their loved ones what they want and don’t want. They should be able to see that one special place, to call the people they love, and to say what is in their heart before it’s too late. And when they can no longer speak for themselves but continue to hang on, you should have the peace of mind of knowing you are doing what they wanted.

In this chapter, I’ll cover how to adapt to your new reality. First, we’ll discuss acceptance. Then we’ll move into how to manage your spouse’s care, including how to get the best out of the healthcare system and how to talk to your doctor. A section with some specialized tips for same-sex couples has also been included, since I learned plenty about how the deck is sometimes stacked against us in the healthcare system.

But before you we can get to any of that, first you need to wrap your head around what has just happened.

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