Each day, ordinary Riverdale residents arrive at a hospice on Henry Hudson Parkway and volunteer to sit with the young and old, rich and poor, religious and non-religious, comforting them during their last days.
Many would see this as a gloomy way to spend time, especially in a society uncomfortable with the idea of human mortality. But volunteers at the 18-bed MJHS Zicklin Hospice Residence describe the experience as anything but morbid. They unanimously agree that sitting with those approaching the end of their lives has enriched volunteers’ own lives in unanticipated ways.
One of the volunteers, Dejanee Velasquez, 23, said it is often the patients who brighten her day.
“I’ve been visiting one patient regularly and we have formed a good relationship,” Ms. Velasquez said. “One day the nurses told me that the patient hadn’t been talking too much lately. When I went to visit with him that same day, he smiled so big that it made me smile … he was talking so much and [said] he was glad that I visited him that day.”
The founding of the modern hospice system is widely credited to Cicely Saunders, who worked in the UK in the middle of the 20th century. She wrote: “You matter because you are you, and you matter to the end of your life.”
But nearly a decade before Ms. Saunders’ birth in 1918, a charity group known as The Four Brooklyn Ladies was inspired by similar ideals to found a precursor of the modern hospice in New York in 1907. After going door to door to raise money, they got a small tenement building in Brooklyn to offer compassionate, dignified and respectful end of life care to local residents.
Despite this pioneering start, New York has been slow to embrace hospice care. In 2012, 32 percent of New Yorkers were enrolled in a hospice during the last six months of their lives, compared to 51 percent nationwide, according to numbers reported by WNYC radio. Experts surmise that this may have something to do with patients› fears that a hospice referral means accepting they will never recover, according to media reports. Another reason may be New York’s medical culture that focuses on curing patients rather than caring for them and eventually letting them go with dignity, NPR reported.
For hospice staff and volunteers, this presents unique challenges in trying to make everyone feel loved, respected and comforted. Their approach sounds simple – companionship. Some find ways to use their individual abilities: in creative drawing, helping to write letters or playing music. Sometimes they will meet outdoors, especially if the weather is good and a patient would like some fresh air. The change in scenery can often provide a boost to the spirit.
“I never cease to be amazed by the quality of individuals who are drawn to offer volunteer services to our patients and families,” said Patricia Cusack, director of MJHS volunteer services. “[It] enlightens me on a daily basis to be more cognizant of the awesome reality of the goodness within people who freely give their time, talent and energy to lighten the burden for hospice families and patients.”
Susan Adler, 54, is a licensed massage therapist and long-time hospice volunteer. She was inspired to volunteer after by the hospice care her mother received at the end of life. Ms. Adler said she decided to try to make a difference in the lives of others by offering massage to help with pain relief and relaxation.
“It can be difficult to see people struggling physically with the loss of their health and strength, and struggling emotionally with the knowledge that they are soon going to die,» Ms. Adler said. “But I am grateful to be able to provide some relief to them through massage, and help make them feel cared for.”
One of the most important parts of care is listening, and this is something volunteers are better equipped to offer than the medical team. Patients sometimes share memories they do not want to share with the doctors or even family members or clergy. They can express pride in their accomplishment and feel they can admit regrets without being judged.
More often it is the little human gestures that count. Ms. Adler recalls being given strict instructions by an often-ornery woman to make tea by grating ginger and boiling water. Doing her best and terrified she got it wrong, she returned to the room, cup in hand, to be met with a smile and the words: “No, no, dear, that’s for you.”
Volunteers such as Ms. Adler and Ms. Velasquez agree that with all the hassles and ingratitude of daily life, walking into the hospice and being appreciated by patients for making a difference in their lives has been rewarding.
But it is not without challenges. There will come a day when the people with whom they have shared their time, their life›s stories, their laughter, and their friendship will no longer be waiting. Sometimes they will sit vigil while their new friend slips away. Sometimes they will arrive the next day to find an empty bed. Fond and final farewells are part of life for those who sit with the dying.
Yet, they say they would not trade this sadness or waver in their commitment to offer simple human compassion and companionship. Many of them have found something positive in witnessing the cycle of life intimately and often. Listening to stories of people›s lives in their twilight hours, learning what it important and what is meaningless when all is said and done, have given them a perspective and wisdom, and a sense of the preciousness of life and human dignity, volunteers said.
“The experience has changed me tremendously,” Ms. Velasquez said. “The way I think about life has also changed. Death is not picky: it can happen to anybody at any age. Because of this, it’s important for me to be grateful for everything that I have and to continuously live and enjoy life.”