A Guide for Families Facing End of Life
If you are reading this because someone you love is approaching the end of their life, you may be feeling overwhelmed, frightened or simply unsure of what comes next. And if you are the person facing the end of your own life, you may have questions about what to expect, how you want to be cared for and what matters most to you now.
This guide is for both of you.
Most of us are never taught what dying looks like or how to prepare for it. We often don't know what questions to ask until we suddenly find ourselves needing the answers.
My hope is that this guide helps you understand a little more about what may lie ahead, gives you things to think and talk about while there is still time and helps make this part of life feel a little less frightening.
There is no perfect way to do this. Every person, every family and every death is different. Take what feels helpful to you and leave what doesn't.
When Someone You Love Is Approaching End of Life
Realizing that someone you love may be dying can bring so many emotions at once. Fear, sadness, disbelief, confusion and sometimes even the hope that maybe everyone is wrong.
You may suddenly be hearing words you don't understand, talking about hospice or making decisions you never imagined having to make. Family members may not agree about what should happen. And underneath all of that, you may simply be wondering, How much time do we have? What should we be doing?
If you are the one approaching the end of your life, your questions may be different. You may be wondering what dying will feel like, whether you will be comfortable, how much independence you may lose or what will happen to the people you love after you are gone.
These are not easy things to think about or talk about.
But learning about dying doesn't mean giving up hope. It can actually give you something very important: time. Time to understand your choices, to talk about what matters, to say things that need to be said and to make decisions before a crisis makes them for you.
If hospice is beginning to come into the conversation, understanding what hospice care is and what Medicare's hospice benefit covers can also help you know what support may be available to you and your family.
And sometimes simply understanding what is happening can take away some of the fear.
Understanding the Dying Process
One of the things I wish more families knew is that dying is usually a process.
The body begins to slow down and its needs start to change. A person may begin sleeping more, eating and drinking less, becoming weaker or having less energy for conversation and visitors. As death gets closer, there can also be changes in awareness, breathing and circulation.
Some of these changes can be frightening when you don't know what they mean. Understanding what is happening can make a tremendous difference in how you experience this time. The National Institute on Aging also has helpful information about the physical changes that can happen near the end of life and ways families can provide comfort.
→ Understanding the Dying Process: What to Expect in the Final Weeks, Days & Hours
What Matters Most to the Person Who Is Dying
When someone becomes seriously ill, it is very easy for everything to become about the illness. Appointments. Medications. Symptoms. Decisions. What the doctor said. What hospice said.
But there is still a person in the middle of all of it.
If you are approaching the end of your own life, this is still your life. You still have a voice in how you want to live the time that remains.
And if you are supporting someone who is dying, one of the most important things you can do is ask rather than assume.
What matters most to you right now? What are you worried about? What makes you feel safe? Who do you want around you? Is there anything you don't want? Is there anything you want us to know?
Some of these conversations may also lead to decisions about future medical care and who should speak for you if you can no longer speak for yourself. CaringInfo’s Florida Advance Directive resources can help Florida families understand and document those wishes.
End-of-life care isn't only about medical decisions. It is also about how someone wants to live while they are dying.
→ What Matters Most at the End of Life
