What to Expect During the Dying Process: What Families Wish They’d Known

We plan funerals. We argue about paperwork. We Google symptoms at 2 a.m. But the day to day reality of the dying process often arrives with zero warning and a whole lot of what the hell is happening.

No one really talks about what dying actually looks like until you are already in it.

After walking alongside many families at the end of life, I’ve seen many different dying experiences but almost all of them end with someone saying, “I did not expect….”  Because it’s not like the movies.  And since we never talk about death and dying, we don’t often share our experiences with anyone else so we don’t know what to expect!

So let’s just get it out there, shall we?  Here are some of the things I’ve heard people tell me they wish they’d known.

1. Dying is usually slower than you expect

Movies make it look dramatic and sudden. Real life tends to be quieter and much longer.

People are often shocked by how much waiting there is. Days blur together. There are long stretches where nothing seems to change, followed by moments where everything shifts at once. That slowness can feel excruciating when you are emotionally exhausted and desperate for clarity.

Knowing this ahead of time does not make it easy, but it can keep you from constantly thinking you are missing something or doing something wrong.

2. Appetite changes are normal and not a personal rejection

One of the most painful moments for caregivers is when food stops being welcomed.

The dying body gradually needs less fuel. Hunger fades. Swallowing becomes difficult. Favorite foods suddenly taste wrong or are refused altogether. Families often panic or feel hurt, especially if feeding has always been a way of showing love.

This is not your loved one giving up or pushing you away. It is the body doing exactly what it is designed to do at the end of life. Offering food gently and without pressure is usually far more loving than insisting they eat.

(Check out this widely known book on the matter)

3. Sleep increases and it can feel like you are losing them early

People nearing the end of life often sleep more. Sometimes much more.

They may drift in and out of consciousness. Conversations become shorter. Eye contact fades. Families often worry that their loved one is withdrawing or that they have already missed their chance to connect.

Even when someone appears asleep, hearing is often one of the last senses to go. Talking, reading, holding a hand, or simply being present still matters. Love does not require a response to be real.

4. The body does strange things that are normal and unsettling

There are physical changes that no one prepares you for.

Breathing patterns change. Skin color shifts. Hands and feet cool. Sounds may come from the chest that are scary if you do not know what they are. None of this necessarily means pain.

Most of these changes are part of the natural shutting down process. Hospice and palliative teams see them every day. Asking questions is not bothersome. It is responsible caregiving.

5. Emotional and spiritual moments can be surprising

Some people talk to people who are not physically present. Some reach for something unseen. Some say things that feel symbolic or out of character.

This can be deeply comforting or deeply confusing, depending on your beliefs and expectations. Many families wish they had known that these moments are common and not signs of distress or confusion that need fixing.

Often, the best response is simply to listen and stay grounded.

6. You can do everything right and still feel like it is not enough

This is the one that hits hardest.

Caregivers often replay every decision after the death. Did I say the right thing? Did I stay too long or not long enough? Should I have pushed for something different?

There is no perfect script for dying. Being present, imperfect, tired, loving, and human is already enough. Guilt loves hindsight, but hindsight is not wisdom. It is just pain looking for meaning.

7. The end does not always look how you imagined

Some deaths are peaceful. Some are messy. Some are quiet. Some are loud with emotion.

Families often expect a final profound moment with clear closure. Sometimes that happens. Sometimes the end is subtle and anticlimactic. Both are normal. Neither means you did anything wrong or missed something sacred.

8. You are allowed to need support too

Many people believe caregiving means being strong at all costs.

In reality, the dying process can hollow you out. It is exhausting, heartbreaking, and disorienting. Wanting help does not mean you are failing. It means you are human.

Support groups, hospice teams, death doulas, and trusted friends exist because no one should do this alone.  (Psst, I host a completely free support group for caregivers twice a month on zoom!)

If there is one thing people consistently wish they had known, it is this:  You are not broken for feeling lost during death. Death is unfamiliar territory, and most of us are learning it in real time.

Gentleness goes a long way here. With them. With yourself.

As always, if you need help or just some calming presence while caregiving please do not hesitate to reach out.