A reader called to ask about how to talk to people who are dying.
She'd read my story about caring for my husband as he was dying of brain cancer, and she had questions about her brother, who had had kidney cancer and other serious health problems.
She sat with him during the last two days of his life while he was at home in hospice. Like my husband in his last two days, her brother was unable to communicate.
She talked to him a little, but it felt strange, and she spent much more of her time talking with his nurse. Years later, she feels guilty that she didn't stop the conversation with the nurse and talk more to her brother. She wishes the nurse had urged her to do that and helped her figure out what to say.
I know what she means. I too felt uncomfortable having one-sided conversations with my husband at the end. I didn't know what to say and I didn't know if he could understand. I figured I'd already told him what I wanted to say and it was enough for me to be nearby, but I did envy people who could rattle on about the good times and how much they cared as their loved one lay dying.
I asked some experts on dying - Sister Mary Joan Smith, a hospital chaplain who starts this week as manager of spiritual care at Mercy Philadelphia Hospital; Gail Inderwies, who runs Keystone Hospice in Wyndmoor; and Lynn O'Brien, who is in charge of Abington Memorial Hospital's hospice - about how to talk to the dying.
Of course, there's no simple answer, but all said they believed that even people very near death could hear and appreciate knowing that people who loved them were nearby. They encourage family members to talk to the dying person, largely because it makes the families feel better. They added that holding a hand might offer as much comfort as a torrent of words. It's being there that really matters.
Smith said she routinely recommended that people reminisce about the good times. It's true that sobbing over a beloved person who's dying might make him feel worse, she said, but it also could make him more aware of how much he was loved.
"There isn't a right or wrong answer," Inderwies said. One of the hardest things is to sit in silence, but, she said, "If a person's not a talker, they may not want you talking a lot to them."
Even so, family members and friends often regret leaving important things unsaid. "It is really what's important to you, what's in your heart, and . . . if you don't say it, you're going to regret it the rest of your life," Inderwies said. " . . . Always leave like this may be the last time you may see them."
She believes it's valuable for families to surround the dying and talk about the good times. "You're going to have a lifetime to sit shivah," she said. "You only have now to share what you want."
O'Brien recommends using short phrases with the dying and says you don't need to talk all the time. Tell them when you enter or leave a room. Share a memory if one pops into your head. Or, you can say, "I'm here with you. I'm just going to read a book, but I'll be around."
It's normal for the bereaved to feel guilty, she said. "We all feel guilty about something after someone dies."
She and Inderwies said people who wished they had talked more to someone who died often felt better if they wrote down what they wanted to say. Some people then bury the words or light the paper afire and watch the ashes rise into the atmosphere. Some go to the grave and speak the words out loud.
"If it's heavy on your heart and something you need to express in some way - do it," O'Brien said.
Contact staff writer Stacey Burling at 215-854-4944 or email@example.com.
For previous stories about Dealing with Death At Home, go to www.philly.com/caregiver.