“Society should do a better job teaching people how to act – and not act – around a dying person.”

(Actual quote from a dying woman)

Surely, everyone who visits a terminally ill loved one has good intentions. I have to believe that most visitors want to provide comfort and companionship. Whether they are looking for a chance to offer a warm hug, share some fun memories or tell a few good-natured jokes, most visitors come with affection in their hearts and good intentions in their pockets. But not everyone is aware of the ways their actions effect their dying friend and the family members and care partners involved.

When my husband was dying and living at home, for the most part, visitors were thoughtful and respectful. We had a few friends who consistently overstayed their welcomes, but I got pretty good at kicking them out with something resembling tact: a sweet smile, generous praise for their good intentions, and a promise of another visiting date in the near future.

Things shifted, however, when Alan moved to a skilled nursing facility, where he spent the last three months of his life. That’s where we encountered more thoughtless actions by visitors. Unless I lose my nerve, next month I’ll share a real-life visitor horror story. But for now, I’d like to share some requests, directly from the mouth of a young woman who died recently.

Here’s what she said:

Stop trying to solve “The Problem.” Often, the initial reaction I get from friends is a well-intended attempt to “fix the problem.” I heard comments such as, “Have you tried abc or xyz?” “We’ll beat this together,” or “What’s the name of your disease, again? I’ll search the internet for a miracle cure or clinical trial.” I really don’t want or need people to try to solve the problem. It isn’t “solvable.” I am dying. I have accepted that. I simply want my friends to acknowledge my reality, be with me and grieve with me. I feel robbed of their authentic presence by their attempts to fix the unfixable.

Ask me what I want. Don’t assume. Please do not assume you know what is best for me or what I want. For example:

  • Don’t assume I can’t cross the street by myself. Don’t grab my hand as we are crossing to relieve your worry that I can’t cross without your kind help.
  • Don’t invite your friend – or even “our friend” to our lunch date. I should get to choose the people with whom I spend my final time, not you.
  • Don’t assume that I don’t want to talk about the fact that I’m dying – or that I do. Ask me, and I will tell you.

Keep your problems in perspective. One of the hardest parts of dying is listening to my friends fill the uncomfortableness by sharing their “problems” (pets needing surgery, kids not doing well in school, a non-terminal health problem, etc.). While I understand those problems are important to you – and intellectually I want to support you – very candidly, I find your “sharing” to be hard to take. I wish you would keep the attention and focus on what I need in my waning days, rather than turning the attention back to yourself. Of course, all dying people may not feel this way. That’s why it’s important to ask!

Please just sit with me, hold my hand and tell me that you love me. Some of my friends are uncomfortable with the fact that I am dying; however, in a few days, weeks, or months, my life will be over. I want people to just be with me – even if it’s in uncomfortable silence and sadness – to give me the space to grieve with them.

We owe a debt of gratitude to this brave young woman, who seems wise beyond her years. She was able to articulate clearly what she wanted and needed. She spelled out for us how she would like to be treated in the last weeks and months of her time on earth. What a precious gift she has given us!

So, yes, society should do a better job teaching us how to act around our dying loved ones. I will try to follow the advice outlined above when next I visit a dying friend.

In her book, By Your Side: A Guide for Caring for the Dying at Home, Barbara Karnes says this: “Being a caregiver for someone you love as the end of their life approaches is a gift you are giving them.” She is right, of course, but I would also add that allowing you to help them is a gift your loved one gives to you.

You will never be the same.

With love,
Joanne

PS. I have a few tips of my own to add to the list above, but I’ll save them for my November blog, tentatively titled, How to be the visitor from hell. Stay tuned!

The material above is derived from conversations conducted by Kim Callinan, CEO of Compassion & Choices, a nonprofit organization dedicated to making sure people at the end of life can access the care options they choose.