5 Things That People Who Are Dying Want You to Know
The hospice chaplain and author of On Living reveals what she's learned about supporting loved ones as they prepare to embark on their last journey.
Photo: Chen Liu/EyeEm/Getty Images
1. They are starved for touch.
"No one ever touches me anymore," my patient Betty said. "You can't imagine what that's like." She looked very small on her nursing home bed.
Didn't the aides touch her, I asked, when they took care of her, bathed her and helped her move?
Yes, she said, but it was different. They touched her because they had to, not because they loved her. It wasn't the same.
"I long to be held," she said, and her voice cracked and broke.
What could I do with such a deep, heartbreaking need right in front of me? What would you do? I lay next to Betty, wrapped my arms around her and kissed the top of her head, the way I do with my children when they go to sleep.
Many people who are dying are starved for touch. So ask your friend or family member whether she wants to be hugged. Put your arms around her. Hold her cheeks in your hands. If she wants you to, climb into bed.
2. They don't need to be told what to do.
There's a well-intentioned but odd piece of advice floating around out there that friends and neighbors of the dying should show up without calling first and do the laundry or clean out the refrigerator. Without asking.
People who are dying often feel like they've lost so much control over their lives already. Someone taking over your home without permission can feel like yet another loss to bear.
Yes, offer to help with chores, but don't decide you know what needs to be done. Call first to see if your friend is feeling up to having visitors that day. Set up a time so he can be ready. Ask how you can be helpful.
Dying is exhausting. If the person says he's tired, go home. And if he cancels at the last minute, know that it might be that he feels absolutely awful that day. Don't take it personally. If he says he's overwhelmed by phone calls, believe him, and send a card instead.
3. They know you are scared, but they still need you there.
People who are dying are still living. They laugh, and reminisce, and love to see the people they love. They're still who they always have been, even as they go through this new experience.
But they're often crushingly lonely. Too many times, I've heard about the children, the friends, the churches, the clubs who have stopped visiting. "She doesn't need prayers! She needs her friends!" a husband whose wife hadn't had visitors in years once cried.
I get it. I really do. I've had education and training to be a hospice chaplain, and have probably visited over a thousand people who are dying, and sometimes it's still hard for me. Sometimes, the sights and smells overwhelm me. Some people die quickly and easily, but most, at least in hospice, do not. The body struggles to hold on, and it can be really hard to witness.
Someone who's dying often looks different, sounds different, smells different and can't do the things she might have once done. Too often, these changes, and perhaps their own fears of death or saying or doing the wrong thing, make a dying person's friends and family afraid of her.
Can you imagine knowing you're leaving this world soon, needing the people you love more than you ever have in your entire life, and all of a sudden, seeing that they're afraid of you? So try. Try really hard to overcome your fear, and call or visit.
4. They might not tell you the truth about their feelings.
"Do you know why you're my favorite?" a hospice patient named Stan asked. "Because you're the only one who will pray that I die this afternoon."
Stan closed his eyes and started again on his favorite pastime: imagining his own death. The scenarios were always different, but what he imagined heaven would be like always remained the same: He'd be walking down a path in a park, and his wife would jump out from behind a tree and yell, "Boo!"
Just as she had 70 years before, on the day they met.
One of the most common things patients ask me to pray for is that they die soon. It can be a huge relief to talk openly about and pray for a quick death, because often their family and friends shush them when they try to.
On the other end of the spectrum, I've had plenty of patients whose families have assured me that their loved ones aren't afraid at all because of family beliefs. And many of those patients, as soon as the family leaves the room, break down in tears, terrified and grateful for the chance to finally talk about their soul-shaking fear.
Never assume you know anything about their spiritual life or feelings. If you want to pray with someone, ask him if he wants to first. Then, ask what he really wants to pray for. There's a good chance you'll be surprised.
5. They're willing to learn with you.
Kate, my new friend at the swimming pool, welled up when I told her I was a hospice chaplain. That didn't surprise me; it's a common reaction if someone's used hospice for their family before.
"The nurse gave us this booklet that explained what would happen as Mom died, and it all happened exactly the way the pamphlet said it would!" Kate said as tears slipped from her eyes. "It was totally accurate!" Her voice caught in her throat.
I was confused. Hospice nurses give out these booklets to comfort families, to assure them that what they are seeing and experiencing is normal. Why did it have the opposite effect? Why was Kate so upset?
"How did I not know this?" Kate continued. "How did I get to be 45 years old and not know that this is how people die? That it's so well known they can predict it? It just seems like something I should've known!"
We don't see death up close very often in our culture anymore, and most people have little or no experience navigating it, so it's normal not to know how it usually happens, and that there are steps and stages to it. Add in the fact that you might already be grieving for your loved one even before he or she is gone, and it's a recipe for confusion and regret.
It's okay that you're not an expert in dying. The person who is dying has never died before either. You can muddle through this process together.
Hospice patients are surrounded by aides, nurses, social workers and chaplains who do know what they're doing. Ask them for advice and information. Don't be ashamed of being nervous or overwhelmed. Not knowing what you're doing is not a reason to stay away.
What people who are dying really need is to be surrounded by the people who love them, even if those people have no idea what's happening. Your loving presence is the greatest thing you can offer someone. You don't need to know anything to do that.
Kerry Egan is a hospice chaplain and the author of On Living.