Advice on end-of-life caregiving

  • The Importance of Talking

Hadley Vlahos is a 31-year-old hospice nurse, mother of three, and, as of this past summer, a New York Times bestselling author: Her debut book, The In-Between: Unforgettable Encounters During Life’s Final Moments, recounts her journey to end-of-life caregiving, delves into some of the more mystical things she’s witnessed as her patients die, and explores the impactful relationships she’s made along the way. The In-Between—SELF’s November Well-Read Book Club selection—is a deeply moving reflection on many of the fears that plague all of us, bringing inevitable life experiences like illness, pain, and death gently to the surface.

I recently chatted with Vlahos about her job, caregiving, grief, talking to her kids about dying, and how to support the people you love when words simply don’t feel like enough.

SELF: What advice would you give to a first-time caregiver for someone who is living with a terminal illness or dying?

Hadley Vlahos: Don’t be afraid to ask for help and take it day by day. For many people, caregiving is a marathon, not a sprint. I come in during the last six months of someone’s life—by that point, it’s not uncommon for patients' caregivers to have already been in that role for many years. It’s not sustainable to care for someone else for that long without a break. If your neighbor offers to sit with your loved one so you can go get groceries by yourself or take a nap, take them up on it! There is no shame in asking for or accepting help.

Do you have any tips for caregivers on how they can take care of their own mental health?

Recognize that anticipatory grief—grieving a person who is still physically alive but no longer themselves due to their illness—is completely normal, but it does make the task of caregiving more difficult. If it’s feasible, I would absolutely recommend getting a therapist or licensed mental health counselor. Caregiving can be isolating and overwhelming. Having someone to help you through those emotions can make a world of a difference.

Is there a part of death and dying that you used to be afraid of but no longer scares you?

I used to be very scared of the unknown. What happens when we die? Does nothing happen? Is it going to hurt? Now that I’ve been with so many patients as they’ve died, I no longer fear it. I witness patients process their inevitable death and come to peace with it. I watch patients see their deceased loved ones before they die and feel very comforted by their presence. For me, I now know that no matter what happens at the end, I have the option to be comfortable and calm. Knowing what a good death looks like and that I should be able to have it makes the thought of death not scary for me.

What’s a common misconception about death that more people should be aware of?

I think that most people feel like their death is out of their hands and out of their control. Many patients feel like they get a terminal diagnosis and are told what to do and when to do it: Get this surgery, get labs drawn, take this medication, etc. They feel like they have no other choice.

The reality is that patients are allowed to say “okay, enough,” and elect to go home on hospice care. Patients are allowed to prioritize what’s important to them at the end of life. For some people that is treatment, but I often hear that patients were not aware that they could choose hospice sooner than they did.

Read the whole interview here: