Living With Dying articles
How To Be With Someone Who Is Dying
By Leah Carey
Jan. 3, 2017
Anyone who has been the caretaker for someone who is sick or dying has heard a dozen variations of these sentiments:
“I wanted to come by and chat but I didn’t know what to say.”
“Just let me know what you need – anything at all!”
“I wanted to know what was going on but I didn’t want to bother you.”
If you have ever found yourself saying one of these things – and almost all of us have at some point – this article is for you.
Because while these expressions of support are well-meaning, they place the responsibility for connection on the people who can least afford to expend the energy: the people who are already in crisis.
Carol Anne Gillis of Littleton, New Hampshire, knows this cycle well – in 1980, she took care of her mother as she died; more recently she had her own experience with cancer.
“When I was going through cancer and I had a lot of people offering to help me, I was too sick to even pick a name to call,” she said. “The list was under the phone – within my arm’s reach – and I just lay there. I thought, ‘I can’t read the list and make a decision of who’s the best person.’ So I waited until someone came.”
Gillis is also the founder of the hospice of Littleton, New Hampshire. The organization has gone through many changes since her time there, but Gillis remains a wealth of information and wisdom on how to be with someone who is sick or dying.
“Let me know what I can do”
A broad offer of help – “call me any time for anything!” – is minimally helpful to a family who is already juggling a million details and emotions at once.
“Offer something specific,” Gillis said. For instance: “If you need a ride, give me a call. If you need a meal prepared, give me a call. If you need someone to stay overnight, I’m a night person, give me a call. Make it a specific category of what you’re offering.”
If you are in the person’s home, keep an eye out for things that the person wouldn’t think to ask for help with.
“It looks like your refrigerator doesn’t have very much in it. Would you like me to do some shopping for you? I’ve got plenty of time, I have to go for myself. I’ll go and pick up some things, what are some things you’d like?” suggests Gillis. “Or pet care. I couldn’t walk the dog, and so I had different people offer to walk the dog for me. That was a wonderful thing!”
As a caretaker, it can often take less energy to do something yourself than to make phone calls to find out who would be willing to do it. That’s why offers need to be very specific, Gillis said.
“It can’t be this vague thing – ‘Let me know if there’s anything I can do!’ All you’re doing then is making yourself feel really good that you offered.”
“I don’t know what to say”
In truth, you may not need to say much at all. One of the great gifts a dying patient can receive is the chance to talk without being interrupted, Gillis said. People at the end of their life often want to review their life experiences.
“It’s a way of dealing with unfinished business and as the person is listening or asking questions about the patient’s childhood, the patient’s early years, the patient’s interests – whatever – it’s just allowing that patient to review. A life review. And that creates, I believe, a peace as the person is getting ready to leave. I think that’s one of the very valuable things.”
Being able to do this with someone other than a close family member, who already knows all the stories, can be wonderful, Gillis said. The most important part of asking the questions, she continued, is to take time to hear the answers.
“It’s got to be in the body language that you’ve got all the time in the world,” she said. “If you do not have time to hear the answer, don’t ask the question. Because we are in such a rushed society, that we say, ‘How are you?’ And we don’t have time for anymore of an answer than, ‘Fine.’ And that’s not the way it is with a person who’s dying. If you ask a question, you’re there. You wait for the answer, no matter. And you don’t fill in the silences.”
“But what if I cry?”
It’s not unusual for people to advise each other not to cry in front of someone who is sick or dying. Gillis thinks otherwise.
“I think the crying – if it’s real, and it’s not you’re crying because of your own stuff that you haven’t dealt with, but you’re crying because of the person – you may be crying for them and it may be very therapeutic,” Gillis said. “So I would not say don’t ever cry in front of someone.”
She even has a suggestion for how to talk about it with the patient.
“I would simply say, ‘I think so much of you that it’s just breaking my heart that you have to go through this and I hope that you’ll forgive me for crying, because it makes me very sad to think of someone so beautiful having to go through this,” she said. “You want to remove any guilt: You’re not making me cry, but the situation that you have to go through is making me very sad.”
The prohibition on crying is something that Gillis thinks takes away from everyone’s time together at the end of life.
“You know how much energy it takes when a family thinks they can’t show the patient anything? They’re wasting a whole lot of life energy just trying to hold it all in,” she said. “They drain themselves of life energy that they could be giving to the patient.”
“I didn’t want to bother you so I didn’t call”
Gillis likens caring for someone at the end of life to being on a piece of ice that becomes detached and floats out into the sea – adrift and separate from the world. While you may not be able to change that feeling with your phone call or visit, you can help remind them that there are people on the mainland ready to pull them back to shore when they’re ready.
“The first thing I would be trying to communicate to them is ‘You’re not alone. You feel alone, but this is not real,’” Gillis said. “I would say that I’m here to listen. I’m here to sit. I’m here to do whatever you think I can. But the main point is that you’re not alone and I am here when you’re ready to talk about it, to be angry. You can express whatever emotions you wish. This is a safe person to say it to. Because it will stop here. There’s a confidentiality that goes with that. So if you want to be furious and rant and rave and do something that no one has ever seen you do when you’re really angry, it’s okay. It will stay here.”
And once again, crying together can be a special gift in these circumstances. “If you want to cry, I might start to cry with you,” Gills said. “But you can cry. It’s safe. I am a safe person for you to do this with.”
Gillis has been at the bedside of countless people before, during, and after their passing. She said that it gives her a great sense of purpose in her life.
“A tremendous sense of doing something to help someone,” she reflected. “Usefulness … Being of value to somebody else.”
A couple weeks ago, my dear friend Jennifer’s father passed away. Although we don’t see each other often, she was an important emotional support through my mom’s illness and passing.
“This whole watching-your-parents-die thing really sucks,” she messaged me. “I can say for certain now that I didn’t get it. I thought I got it, but now I really get it.”
Another friend recently lost his family dog very unexpectedly. Even after my own experience of receiving condolences, I was at a loss for what to say to him.
Carol Anne Gillis echoed a sentiment that I’ve heard from numerous people in interviews for this series: “We don’t really know how to communicate very well now.”
I remember some of the things people have said to me through this experience that boggled my mind. The one that sticks out is the person who asked me what type of cancer Mom had.
“Uterine,” I responded.
“Oh, that’s good,” she said. “At least it’s not one of the bad ones.”
Or the people who ask me how I am doing, who prod the still-smarting wound of this loss, only to immediately turn the subject to their own troubles as soon as they get a tear out of me.
No, we don’t know how to communicate very well now. And part of the problem is that we keep illness and death under wraps. It was only a generation ago that “cancer” was like a swear word – only used in hushed tones when children weren’t around.
My own beloved mother wanted me to have all the emotional support I needed – but I shouldn’t talk about what was really going on because she didn’t want people to know how bad it was.
I think about all of the things I have said in the past to people, thinking I was being helpful – “Call me anytime! I’m here for anything you need!” – and realize how inadequate those words were.
I wonder how many unintentionally hurtful things I have said to others going through the pain of losing someone. Because, like Jennifer, I thought I knew. But I didn’t know.
These days there’s a self-help book for just about everything. But I’m still searching for the book that effectively shares what it’s like to go through the death of a treasured loved one for someone who hasn’t been there.
And in truth, it might be an impossible book to write. Because we think we know. But until we go through it, we just don’t know.