Because we don’t tend to talk about death and dying in our culture, most people are afraid to be with a dying person, unsure of what to do or what to talk about.
I was with my husband when he died. During the two days between him not waking up after surgery and discontinuing life support, I was with him for 12 hours a day. COVID restrictions at the time limited guests to two at a time and no one was allowed to spend the night. Sitting with a dying person for 12 hours may sound grueling, but I found that I became so absorbed in the present that the time flowed.
More recently, a loved one made the decision to begin receiving hospice care, which means they are no longer receiving medical intervention for infections and conditions and only taking medicine for pain. Typically when a person begins receiving hospice care, it means they are ready to die, but it may take months or longer for that to happen. In the case of my loved one, they are progressing quickly toward death.
I have spent the last few evenings with my loved one and their partner.
My thoughts on how to be with a dying person are shaped by these two experiences and also my own near-death experience after I had a stroke in 1997.
Here’s my advice:
If they are able to talk, they may be hard to understand. Be patient. There is no urgency. Give them time to stumble over their words. Follow their lead about what to talk about. They may want to talk about dying or the weather or their mother or something else. Whatever they want to talk about is ok. You don’t have to try to steer them toward or away from certain topics.
If they are responsive but not able to talk, you can hold their hand. You can talk to them about memories, you can read to them, or you can be quiet. Sometimes sitting in silence with someone is more comforting and profound than filling the space with words.
It’s ok to bring a book or play a game on your phone. You might scroll through pictures on your phone and show them to your loved one, if their eyes are open, or describe the photos to them if their eyes are closed. When my husband was dying, I chanted his favorite Buddhist chant.
If they are not responsive, talk to them. The point isn’t to wake them up but to help them understand what is happening around them. I don’t know what a person who is dying and appears to be sleeping understands, but I choose to believe that they can hear us talking and feel us holding their hand or touching them gently.
When I enter the room of a dying person, I announce my arrival to the person and give a description of what I’m doing. I might say, “Hi, Loved One. It’s Liz. I’m here to say hello and tell you I love you. I’m going to sit down on your right and hold your hand.” I also announce when I’m leaving.
When I visited my loved one today, I noticed several vases of beautiful flowers in the room that others had brought. I described them in detail to my loved one so they could picture them if they wanted to. I told my loved one how good it was to see them looking peaceful.
When I was in a drug-induced coma after my stroke, I did hear people’s voices. I don’t know if I captured everything that was said around me, but I was certainly aware of who was in the room with me and the broad strokes of the conversation.
It’s ok to cry. It’s ok to not cry.
You don’t need to entertain them, but it’s ok to laugh. Death may feel like serious business, but I think my husband enjoyed hearing his loved ones laughing around him as he died.
If the person is at home, it can be nice to bring some food for their family, if they live with others. At my loved one’s home, people have brought cheese and crackers, brownies, fruit, salad, and other easy-to-eat food, along with many bottles of wine.
Take care of yourself: take breaks, stay hydrated. I have had to set alarms to remind myself to go for a walk, have a drink, and eat a snack every few hours.
It can be exhausting emotionally, which may leave you feeling tired, irritable, or disoriented. You may feel calm when with the person and then weepy and anxious later. Or vice versa. I find that I feel completely calm and open while with a dying person and then I’m very anxious and sad after. The anxious sadness can last for days.
It can help to remind yourself that being with a dying person is an honor that not many people get to experience.