What matters most?

I often talk about having a conversation with the people you love about what is most important to them at the end of their life, way before someone is dying. If we have these conversations early, we can put it aside until needed, but at least we will know in advance how they want to be cared for, what matters most, and how we can truly honor their wishes.

This is very important information to have.

We tend to want to stay at the bedside of someone we love who is ill, declining, and dying. Sometimes not leaving for hours at a time. This can be exhausting for the person sitting vigil. They are not taking care of themselves, they are not getting enough sleep or eating well or taking a break, which they deserve. I understand the need to be there, I too have not wanted to leave the bedside. But what if that is not what they want? What if they don’t want to be stared at for hours at a time? What if they don’t want a room full of people? What if they want peace and privacy? These are questions we need answers to.

There is a sense of guilt that people feel when they get up and walk away, as though they are abandoning the person they love. But what if you were given permission to step away, to get a cup of coffee, to take a nap, to run errands, or to just breathe? Would you feel less guilty? You have probably heard me say before, “they don’t take with them who was there at the last breath, they take with them who was there all along.” I believe this. I have witnessed numerous people take their last breath minutes after someone walks out of the room, or moments before they walk back in. What if that was intentional? What if they didn’t want an audience? What if they didn’t want that to be the last thing you see?

I truly believe that even when the person in that bed is non-responsive and unable to tell you what they think or how they feel, there is a certain sense of awareness. They know you are there; they know how you are handling everything that is happening, and they especially know how you are feeling. This is that time when you need to know what they would want and need from you.

Would they like you to read to them, or play music?

Would they like you to share about your day?

Would they want visitors, or prefer not to have them?

Would they want you to be there, holding their hand, with no words needed?

Would they want you to give them some space and privacy?

If you knew the answers to these questions ahead of time, you could honor their wishes accordingly, but more than that, you could also give yourself permission to step away for a bit without the punishment most people inflict upon themselves.

Imagine you are the one lying in that bed and everyone you love is sitting around you, staring at you, anticipating your death, struggling with the ache they are feeling. It is hard enough facing the reality that you are dying but taking with you the pain it causes everyone around you makes things twice as hard. If you don’t have the conversation, and you aren’t sure, at least have everyone take turns, don’t overfill the room, and turn your phones off. Don’t feel obligated to say anything at all, just be with them in silence, that can be calming. They know you are there, they feel your love, and I imagine they also feel a sense of peace knowing you are there... but also knowing that you have stepped away to practice a little self-care physically, emotionally, mentally, and spiritually.

Have the conversation now with the people you love. Find out from them what is most important to them in the last weeks, days, and hours before they die. Think of the five senses… what do they want to hear, feel see, touch, and smell?

Knowing this will allow you to honor them beautifully, which I know is what you want to do.

xo

Gabby