David Markowitz's 95-year-old father was in the final stages of congestive heart failure. He suffered from dementia and was so agitated that he howled much of the time. Neighbors even called the police. When he was finally recommended to end-of-life care, his social worker and nurse, in contact with the patient's physician, recommended medication to calm the severe anxiety.
But David resisted. He had lost his mother and sister, and his father was the only family he had left. Although David (whose name we've changed to protect his privacy) did not articulate why he was resistant, social worker Stephen Borow's 15-plus years of experience in end-of-life care told him that David was frightened of losing connection with his father. And for the son, even the screaming was a connection.
"I have to find a way to let him know that his father's screaming means that he is suffering," Stephen said. "There are other ways for them to connect besides the screaming."
When a loved one is dying, we experience a profound need for connection at the same time that our habitual avenues of connection -- conversation, activities, shared experiences -- are closing down. Over many years in hospice care, I have seen a number of ways family and friends connect in those final days with a loved one who may be drifting in and out of consciousness, cannot communicate verbally, or otherwise seems beyond reach:
• Touch -- Holding a hand can forge a profound connection.
• Read--Reading creates a shared experience, even if your loved one cannot respond.
• Sing -- Song touches the spirit and impacts the body.
• Reassure -- Let your loved one know that it is okay to go.
• Be -- Just being there can be connection enough.
Stephen understood what his client was going through in more than a professional way. Both of Stephen's elderly parents were in hospice care, too, his father in a nursing home and his mother in assisted living. "She doesn't recognize me, does she?" his father would ask when Stephen took one to visit the other. Stephen put his father's hand in his mother's, and witnessed a deep connection. "He went quiet, and she went quiet," Stephen said. "There are ways of finding connections, even if they're not verbal."
Ranging from a gentle brush of the hand to hands-on healing modalities such as Reiki, touch creates an instant human connection. "People who are ill may well feel that they are not touchable, not loveable," notes the Rev. Vince Corso, a bereavement and spiritual care manager. "Touch is a very important nonverbal affirmation of their humanity, their value."
Peggy Neimeth, a social worker with much experience in end-of-life care, recalls that when her 92-year-old mother was dying, she seemed to find great comfort in her eldest granddaughter sitting by the bedside and stroking her hand. "Although my mother was blind and suffered from dementia and could make only repetitive sounds, I'm convinced she knew her granddaughter was there," says Peggy. "She fluttered her eyes, and you could just tell she was at peace."
(As with all these suggested connections, find a gentle way to ask or gage permission from the friend or loved one who is dying.)
Pauline, a home health aide who cares for people in their final weeks and months, often reads to her clients. She asks them what they'd most like to hear or, if they cannot communicate, she extrapolates from the life they lived what would be comforting. Often it's the Bible and the newspaper, as with her most recent client. At first, they would have robust conversations about the reading material. As he grew weaker, he became unable to talk -- but she still read every day. "When I saw his face light up, I knew he was still hearing and enjoying," she says. "I knew I was still making a difference in his life."
Abby Spilka, a trained "vigil volunteer," has sat at the deathbed of several New Yorkers with little or no family nearby. She finds that reading, even silently, creates an easy connection, and she often brings poems or meditations when she is sitting by the bedside. I've seen children reading a favorite story to grandparents, a wife reading a book they both loved to a husband, and many faithful reading from the Bible.
Bebe Broadwater, a musician and hospice volunteer, fondly remembers visiting a patient named Bill in his final months of life and discovering he, too, was a music lover. "Every time I saw Bill, we would end up singing a couple of duets," she says of her weekly visits. "Old Irving Berlin songs. Even toward the very end, when he was feeling so tired, he would brighten up and sing."
The power of music on the heart and mind has been well documented, including its ability to reduce anxiety and depression, soothe premature babies, increase quality of life for end-of-life patients and even help release dementia patients from a fog.
Hospice volunteer Rebecca Kaplan is part of a choral group known as a threshold choir, which uses song to soothe the suffering at life's thresholds such as births, major surgeries and deaths. The New York volunteers visit patients undergoing cancer treatment or in hospice care at Memorial Sloan Kettering, Beth Israel, and the Visiting Nurse Service of New York Haven Hospice Specialty Care Unit at Bellevue Hospital. After asking permission from patient or family, the choristers softly fill the room with song. "It changes the feeling in the room, the whole dynamic," says Rebecca. "It allows people to cry, to open up, to relate to each other. It holds people in compassion."
A colleague recently told me about the remarkable last night of her 93-year-old grandfather's life. His wife of more than 70 years stayed up all night holding his hand and reassuring him that it was all right to go. She enumerated the support systems she had in her life -- daughter, grandchildren, good friends -- and assured him she would be all right. "At the end of it," she said, "he simply stopped breathing."
"Last days are about quiet reassurance," says Judy MacDonald Johnston in an inspiring TED talk on preparing for a good end of life. She stewarded Jim and Shirley Modini, a nonagenarian couple in California, through their final months of life. The couple had no children, and their main concern was that their beloved 1,700-acre ranch and its wildlife were in good hands. Their decision to donate it to Audubon Canyon Ranch Wildlife Preserve gave them peace of mind -- which the care team reminded Jim of on his last day. "He could not speak," Johnston recounts. "Through his eyes we knew what he needed to hear again: 'Everything's all set, Jim. We'll take care of Shirley right here at the ranch, and ACR will take care of your wildlife forever.'"
She wisely suggests that as part of your end-of-life conversations you make clear what final words you want to hear and from whom you want to hear them.
The simplest -- and, at the same time, the most difficult -- way to connect at the bedside of a dying loved one is to just be. Concentrate on the moment, listen to the breathing. Let your thoughts land softly, or alternatively, take flight. This is what Alison Reynoso, who trains and organizes vigil volunteers for VNSNY Hospice and Palliative Care in NYC, tries to convey to those preparing to visit people in their final hours.
"It's so important to be comfortable with just sitting and being a presence for those who are dying," she says. "Make sure you are centered before you enter the room, and focus on your intention, which is just to be present. It's no more, and no less, than sending love and peace to the person you're with. You don't even have to speak it. You can communicate it in your thoughts."