Nancy Nicolosi is a nurse with a special calling. She has gift for bringing families together when they feel wrenched apart by the inevitable loss of a love one. As a nurse for Hospice Care of the West, she crisscrosses Orange County and Los Angeles County.
It started about 25 years ago when she knocked on the door of her patient’s home in Orange County. His adult daughter answered the door.
“I’m Nancy, your hospice nurse,” she said. “I’ll be coordinating your father’s hospice care.”
Joe’s daughter welcomed her in.
“Before we go in to meet him, I’d like to know a little bit about your dad. Can you tell me about what he was like when he was at his best?”
His daughter looked a little perplexed but as they walked down the hall to her father’s room, Nancy began asking questions about the framed photographs on the wall. She pointed to the picture that showed a strong, prominent looking man with flecks of gray in his thinning brown hair. He wore a shirt and tie.
“My Dad was the CEO of an aerospace company,” his daughter said half smiling.
They approached the picture when Joe was in his early thirties with a full head of slicked back dark brown hair, muscular body and healthy complexion. Joe’s wife, son and a few other family members joined in.
“Here is my Dad with me when I was four,” she said. He appeared so joyful with his arms wrapped around a darling little girl, Nancy thought.
“He looks like a good father,” Nancy said.
“Yes, he is, we’re really close,” said his daughter beaming.
They all lit up and appreciated a moment to reminisce about their father. In that short walk down the hall,
Nancy helped the family to celebrate Joe’s life as he neared death. Upon entering his room, Nancy held the visions of healthy Joe in her mind’s eye, although she now faced a gaunt man in his 70s with gray balding hair. She treated him with dignity and respect that a revered father deserved, not like a withering patient. Since that experience, each time, she enters a patient’s home she always asks to see a picture of he or she in the prime of life.
“I only see the CEO, the beauty queen, the tennis player, the surgeon, the mom, the dad, instead of the person debilitated by the cancer or dementia,” Nancy said.
She recommends that every young hospice nurse do the same because the exercise deepens her empathy and ensures that she treats the patient like she would want her father, mother or spouse to be cared for. Each day, she encounters a multitude of experiences upon visiting patients’ homes. The question she gets most often from the family and patient is…
“How much time do I have left?”
“How much time do we have left?”
Her answer is always the same, “The doc says six months or less. So, I can’t answer that for sure, but until that time, we will take the best care of you. Under my watch, I will do everything to be sure you’re out of pain and that any distressing symptoms are alleviated.”
She spends a varying amount of time during each visit, sometimes an hour, other times several hours. The length of her visit is determined by the unique needs of her patient. The biggest fears that she faces are patients worried about being in pain and leaving their family behind. She knows with her experience by ordering a hospital bed and the right combination of pain meds that hospice care will alleviate their pain and other symptoms brought about by the end stages of the disease. After being at the bedside of many people at the end of their lives, she knows that a loved one can have comfort, peace and even moments of unexpected joy in the last days on hospice care.
“I will change those pain meds as many times as need to make sure no one dies in pain,” she said.
Then there is the kind of pain that is a bit more different to tackle such as when a patient feels hopeless because he or she will miss those milestone moments like an 18th birthday, or wedding day, or birth of grandchild. She listens because that is sometimes all that they really need is someone to understand.
Nancy often says, “Well, we can’t fix that but we have now.”
In the now, she suggests the patients write a letter of something they would say on that special occasion. Or use a recorder to dictate it. Or ask a family member to write it or record it.
Recently, her mother passed away. Throughout her mother’s life she always collected her parents’ life stories in memory bank in the back of her mind. But as she sifted through her mother’s personal effects, she came across a picture when her mother and father looked fabulously dressed up. For some reason, she had no idea where they were going? At that moment, she realized just how much families miss out on when that person is gone because they don’t take the time to ask, reminisce and share life stories. Her personal experience has led to always suggesting her patients and their families record a life review video offered by the volunteer program at Hospice Care of the West that preserves precious family history for the survivors and next generation.
Nancy had always dreamed of becoming a nurse since she was a little girl. She attributes this ambition to care for others to her very nurturing mother. Nancy’s brother is a physician. Her father was a hospital administrator. She started as an oncology nurse back in the 1980s because cancer is in all parts of the body and she really connected with the psychosocial aspects treating the family as a patient too. Hospice was a natural segue after she made the decision she wanted to help families in their home rather than in the hospital. Today, she is a nurse for Hospice Care of the West. Nancy is part of an interdisciplinary hospice team that consists of a doctor, a nurse, a social worker, a spiritual care coordinator and a volunteer if requested to support the family and care for the patient in the last six months of life at home or in an assisted living facility.
She explained that it’s different treating a patient in a hospital because in her line of work the patient and family have authority over the home.
“Once you step through that door, you are not telling them what
to do, instead you’re asking them, Nancy said. “Essentially, I become one of them, I suggest, I never dictate.”
In some cases, she becomes a member of the family’s team and can help make appropriate medical and personal decisions that lead to a fulfilling end of life journey for all involved, but there are times when she has to just step back and gently guide.
“Hospice isn’t all rainbows and flowers,” she said.
Nancy had a patient who according to her daughters wasn’t the best mother. On her deathbed, she wanted to be their mother again. The daughters said of their mother to Nancy, “She was quite possibly the worst mother in the entire world, but we want to make sure that her last months are the best because we have to live on.” Nancy assured them from her experience with end of life and the aftermath of grief, they had made a decision that would help them all endure the challenging hours ahead.
One afternoon shortly after that call, the two daughters sat on either side of their mother on her bed. The daughters were taking pictures, laughing and carrying on with their mother. In that instant, she gasped and the life swept out of her.
Today they cherish the picture and memory of caring and loving their mother to the very end. The time in hospice gives families precious hours, almost borrowed time to get it right. When Nancy thinks of the best way to spend that limited time left, she often reflects on that picture of the daughters laughing and loving Mom to her last breath.