‘Once she explained it to me, I could just let go’
“I want to get the word out about important hospice is,” said JoAnn Nadeau of Mashpee, when she agreed to tell her story.
Her husband, Paul, died of esophageal cancer this past May and, with the help and support of the VNA of Cape Cod Hospice & Palliative Care team, he was able to die comfortably at home.
“I had no idea how comprehensive their help was going to be and how it was going to extend out to my family,” said JoAnn. “I am so grateful for their support, and the caring and gentle way they took care of Paul.”
His cancer journey began in July 2015. While he did go to Dana Farber Cancer Institute for initial consultations, the couple decided after meeting with Cape Cod Hospital specialists they felt more comfortable having Paul’s treatments at Cape Cod Hospital.
A PET scan showed that the cancer had not spread, which made him eligible for an esophagectomy, a surgery to remove the tumor in the esophagus, according to JoAnn. Jeffrey Spillane, MD, a surgeon at Cape Cod Hospital (CCH), performed the surgery on the couple’s 45th wedding anniversary in November 2015.
After a lengthy recovery, Paul and JoAnn met with Jaclyn Flanigan, MD, a medical oncologist at Davenport-Mugar Cancer Center at CCH in January 2016. She had to break the news to them that the most recent PET scan showed Paul’s cancer had spread.
“They saw a lesion on his liver and after doing a biopsy, it became clear that they weren’t looking for a cure,” she said. “Instead, they were looking to prolong Paul’s life as long as they could with chemotherapy.
“I’d say in the whole scheme of the two years that we were going through his diagnosis, treatment and hospice, that was the biggest shock for me. We were told with this type of cancer that it could spread seeds to other areas of the body, but I never thought it would happen.”
Deciding On Hospice
Paul was pretty healthy when he began his weekly reduced-dose chemotherapy treatments, according to JoAnn. As time went on, he became more fatigued and his appetite dropped off. He told his wife that if could get his strength back, he would be OK.
“Paul is Finnish and one of the words for tenacity, or courage or digging deep is ‘sisu,’” said JoAnn. “He talked a lot about needing sisu during this time.”
In December, the couple decided to take a brief trip to Oregon where their two daughters live. Paul, who loved music, had the opportunity to hear one of his grandsons sing in a choir.
“It was a good decision because it was the last effort he was able to make,” said JoAnn.
Two months later, JoAnn decided she needed more help with Paul’s care because he seemed depressed and he was shutting down.
“He had to put all his energy into just functioning,” she said.
They met with Jeff Gaudet, LICSW, OSW-C, survivorship program manager at Davenport-Mugar Cancer Center, and he suggested palliative care with the VNA Hospice program.
Everything was set into motion and after meeting with a representative of the program, Paul had a physical therapist, nurse, and dietician scheduled to come to the house to evaluate him and start care.
In April, 2017, as Paul’s condition continued to decline and after two falls, one that caused a brain bleed and a brief hospitalization, his nurse from the onset, Christine Eaton, RN, talked to him about moving onto hospice.
“We found out we would get even more services and he was able to get the medical equipment he needed including a walker and hospital bed,” his wife said. “The thing that really pleased us was once we switched from palliative care to hospice care, the entire team remained the same.”
Eaton was an important part of making Paul and her feel comfortable, JoAnn said.
“She was very upbeat and had a way with him that even when he was grumpy, she could joke with him and turn him around. And she always listened to what he had to say. She was so important to us from day one.”
Amy Squeglia, PT, his physical therapist, helped Paul maintain his energy as long as he could.
“She would go at his pace and yet be encouraging and humorous,” said JoAnn. “One day she asked him about his hobbies and he said one hobby was using his computer, which he hadn’t been able to do for a long time. He was so fatigued, but she helped him get to his computer, started it up for him and he sat there for 15 minutes using his computer for the last time.”
Paul really appreciated having Robert O’Toole for his home health aide, she said. Paul felt comfortable with Bob, who was always great about following Paul’s lead for whatever he could tolerate for care, she said.
JoAnn is also very appreciative of the people who staff the phone at night.
“When you get that paper that has the 1-800 number on it and you put it on the refrigerator, you don’t realize how often and in how many different circumstances you are going to have to call,” she said. “I called so often in the middle of the night, especially if Paul was having symptoms and I didn’t know what to do. The person on the other end of the phone was so patient and calm and always engaged. Michael Nelson, RN, was one of the people I would talk to and he was wonderful. The people who answered would tell me that someone would call me back in a couple of minutes to help me and they always did.”
The social worker, who helped with emotional support and guidance for the couple, as well as their family, was Sarah Stevenson, MSW. She was instrumental in helping JoAnn understand the various processes and stages of dying and the emotions that her husband was going through.
She supported the couple’s two daughters and grandchildren, advising them on when to come for a visit – sooner rather than later – when it was becoming more apparent that Paul had little time remaining.
It became difficult for Paul to talk with JoAnn about his needs towards the end, and Stevenson was able to help her understand that people prepare for dying in different ways.
“Once she explained that to me, it took it off my plate, I could just let go,” said JoAnn. “My biggest fear as Paul’s caregiver was not knowing the signs of when he was getting close to the end. She explained the signs and reassured me that I would know.”
With the full resources of Cape Cod Healthcare, VNA Hospice is the highest-rated hospice on the Cape. For more information on Cape Cod Healthcare VNA Hospice, call 800-978-0838 or 508-957-7710. You can also learn more about VNA Hospice here: