The 75-year-old mother spent her final weeks of life being cared for in her daughter's Chinatown apartment. Exacting and demanding all her life, the mother never hesitated to complain and criticize, and resentment was mounting. Cooking, cleaning and caring for her mother, the daughter felt she could never live up to her mother's expectations. "She's never said she loved me," the daughter told bereavement counselor Pamela Yew Schwartz.
As a longtime member of the Chinatown community, Pamela knows that the word "love" and similar sentiments are hard for Chinese people of a certain generation to utter, even to their children. But as a longtime hospice provider, Pamela also knows how important it is to to open lines of communication at the end of life.
So when the mother told Pamela that she was thankful to be in her daughter's home, Pamela seized the opportunity. "I said, 'Does she know you feel that way?'"
"I've never said it," said the mother. "I can't say those words."
With the mother's permission, Pamela called the daughter into the room. With Pamela's prompting and support, the mother told the daughter how grateful she was for her care. "It was quite a powerful moment," says Pamela, "even if the word for 'love' didn't come up. I do this often, interpret between parents and children."
End of life is fraught with the stuff of life, and that can include tense relationships between spouses, parents and children, siblings who may disagree on a parent's care or may harbor years of rivalries and resentments. With skill and compassion, VNSNY Hospice counselors and clinicians help foster healing communication at life's end.
How to Read a Room
Members of a hospice team can often tell where sources of tension might lie as soon as they walk into the room where family is gathered. Is there an outlier standing at the window or otherwise holding him- or herself apart from family? Are people turned towards or away from one another? Is the room or house highly disorganized, messy or chaotic? That can signal a high degree of anxiety.
Social worker Joel Kaplan learned early in his career to read cues, and position himself where he feels family members need him most. He still recalls a case from many years ago that made him particularly attuned. The patient, an elderly wife, lay in bed, while her husband sat half a room away, by the window. When she said, "I want to hold your hand," Joel stepped away from the bedside to make room for the husband. "No," she said to Joel. "I want to hold your hand. I want to show him what it looks like to hold someone's hand."
Joel calibrates his own position in the room based on how others are gathered. If he notices someone in the corner, he might engage them. Other times, he stays out of the way, giving support in the background and being on hand to answer questions. He also listens closely, to how family members talk to one another. Do they use terms of endearment? Do they talk about one another in the third person? He'll mediate if he senses the patient or family members need something from one another--expressions of love, validation or forgiveness--that is going unspoken.
Actions Can Speak When Words Don't Come
In the Chinese community (as well as other communities), men can be particularly reticent in times of caregiving and bereavement. So when the family patriarch was at the end of life and his family was gathered around, Pamela encouraged the son--who was keeping himself apart--to come clip his father's fingernails. "Men are often more comfortable when they have something to do, a task," she says, whether it's cutting fingernails, making arrangements for the funeral, or figuring out travel for far-flung relatives.
This approach can be used with younger children, too, not necessarily to navigate strained relationships but to give them a meaningful way to participate when they may not be able to find the words. Suggest a young child get her grandfather a cup of water, or draw a picture to show him when he wakes up.
Unite Around a Common Goal
As their mother was in the final stages of illness, the two sisters could not have been more different. One was a Muslim, one a Christian. One was quite communicative about her struggles with her mother's impending death and committed to keeping her at home in her final days. The other sister was not. Tensions ran high. Over the course of many family meetings, hospice nurse Luis Leighton worked with the sisters and other family members to outline their goals for their mother and for the family--to keep the mother comfortable, manage her symptoms and keep her surrounded by family. In this way, they managed to identify common ground and work together. "They eventually left their past disagreements to focused on the present moment -- and unite in a common goal for their mother."
Pamela, too, has worked with many a family in which relations among siblings are strained. In some cases, the primary caregiver, often a daughter, can harbor resentment towards other siblings who are less involved but may get more attention. Other families, with multiple marriages, may have half-siblings who are largely strangers to one another but are yoked together in a parent's final days. "I encourage people to, at least behaviorally, come together at the end," says Pamela, It's giving faith, to the parent or other loved one. You do it for someone else because you need to do it. Whether you feel it in your heart or not, you do it."
Still, there are times when family members are too far away--whether geographically or emotionally--to get to a loved one's bedside before death. For those people, Pamela recommends seeking solace in the power of ritual. If you couldn't say it or do it or feel it when the person was still in this world, use the space that bereavement rituals open up to heal that relationship. Americans can participate in the Chinese grave tending festival of Qingming, a public holiday in China that dates back thousands of years, and a tradition that is carried on in cemeteries here as well, she says. Or write a letter that expresses the sentiments you could not. Bring it to the gravesite, put it in a drawer, or even put a match to it, so long as you let yourself feel the connection.
"Now Is the Time"
Our hospice counselors and clinicians also use the experience they have with people who are dying to help family members seize the opportunity to say what they need to say, whether it is goodbye, I love you, I'm sorry, or something else from the heart. "I am explicit in my language at the end," says Joel. "There are signs I recognize when someone is imminently dying, and I will say to the family, 'Now is the time.' I want to make sure they don't miss the moment."