Phyllis's Journey

Eight years ago I began the most rewarding years of my nursing career … I became a Hospice nurse. Having been a nurse for 32 years and always working in a hospital, I never imagined I could find such reward and fulfillment every day. I learned early that Hospice was not about dying, but was about quality of life and living for those with a life limiting illness. Every day was a learning experience and 8 years later I can honestly say I am continuing to grow and I learn something new from each patient and family member that I care for.

My first Hospice experience began with a courageous and gentle woman named Phyllis. She had been receiving Hospice care for several months and I had become her new nurse when replacing her nurse that was moving out of town. She and her husband welcomed me into their home and she shared feelings of pride for her family and devoted husband who was caring for her. She had taken time to make scrapbooks of her family with memories of their lives together. She shared these with me and had been so grateful that she had the time and strength to complete them. They would mean so much to her family in the years to come. She had shared with me the fears of her illness but also the strength of her faith.

I always looked forward to my visits and helped prepare medications, assess her physical needs and support her husband and family. As her condition weakened, she was comforted to know the Hospice team would assist her with personal care as well as meeting her need for adequate pain control and comfort measures. Her Hospice Medicare benefit allowed for provision of equipment such as oxygen, a hospital bed, wheelchair and other supplies to be provided, as well as medications for comfort . Having developed confidence and trust in those caring for her, I was able to teach everyone about her care so that she could remain in the home she so loved. I communicated with her doctor as well as the Hospice Medical Director physician about her condition on a regular basis and obtained orders from them for her care. The Hospice Social Worker helped with information regarding her care planning and offered ongoing support. Her pastor and Hospice chaplain met with her regularly to meet her spiritual needs. She now looked at life in a new light.

Phyllis’s condition had declined gradually and her activities were very limited. Her condition had remained this way for a few months and the Hospice physician recommended she be discharged from the Hospice program to be evaluated with tests and it was determined that surgery may give her extended quality of life. She was fortunate to recover and regain strength to be able to care for her husband as he became ill and declined over the next few years. They sold their home and moved to an Assisted Living facility. They changed their lifestyle, but were able to remain together until his Alzheimer’s disease progressed and he went to an extended care facility when she could no longer care for him. As his disease reached the end stages, Hospice care was requested to assure his comfort needs were met and the family was comforted and supported through this difficult time.

Soon after her husband died, Phyllis’s condition again returned. She accepted her disease, requested no other treatment, and wanted only comfort measures and quality of life. She was living alone in the Assisted Living facility and once again requested Hospice services. Phyllis had requested that I was her Hospice nurse and I was honored and delighted to be able to meet with her on a regular basis. She was always so grateful and gracious. As her condition weakened and she needed more care, she did not want to be a burden to her family. Her son explained that he and his wife agreed that they wanted to be a part of her journey and welcomed her into their home. My Hospice visits continued to his home and I was able to teach him and his family members about medication and care. Phyllis was so relaxed and comfortable at his home and all of her family gathered for Thanksgiving, Christmas, her birthday and get-togethers. They reminisced and shared wonderful memories of their lifetime. Phyllis could not wait to share her stories with me as she celebrated her life. She was so proud of her family and so grateful for her care. A Hospice volunteer would also go to the home and sit with Phyllis for companionship and stay with her if her son needed to do errands.

Phyllis’s condition slowly declined again, but she always shared with me that her faith was strong and she was not frightened. With every visit I would assess her pain and comfort levels and her medication was adjusted to assure her comfort.

Phyllis worried about weakening and being a burden to her family, but they assured her that it was important for them to be a part of her journey and they wanted to care for her as she had cared for them when they were young. This was such an honor and privilege for them.

I cannot begin to tell how much this experience has meant to me. What a privilege to learn so much and how this has helped me to help others, as well as myself and my own family members.

One day as I sat with Phyllis and her son, she said she wanted to be able to share with the community how much Hospice support has meant to her. I asked her what was the first thought that came to her mind and she answered without hesitation, “Why it makes me happy!” She always felt relieved and supported when a Hospice team member called or visited. She always felt comforted to know a nurse was available 24 hours a day, 7 days a week and she did not have to be in pain because they always listened to her needs and understood what she wanted. She knew her family was also supported and her dignity was respected.

The day came when Phyllis told me she was too tired and weak to get up from the bed anymore. Rest was welcomed. The Hospice aide had been coming 2 times a week to assist with bathing and personal care. Her visits were increased and Phyllis was so comforted by this. The family was grateful for the support and teaching them how to best comfort her.

Most of the day and night there was music playing softly (her favorites from Tommy Dorsey or her favorite dance bands, relaxation or Celtic harp music). The fragrance of her favorite lotions were present and she was surrounded by her pictures and favorite figurines as her family sat by her bedside to share in this journey. She was at peace.

Sometimes people may ask me, “How do you do what you do?” I respond with a statement that my Nurse Manager and mentor shared with me, “How can you not do what you do if you can help to make a difference?” I am rewarded daily by the people who touch my life in a way that will ultimately touch others. We help each other and I am blessed to work with a team of professionals that consistently demonstrate compassion, commitment, dignity and sacredness of life.

Phyllis had asked that I share her story in hopes that others may benefit from her Hospice experience. This was truly her gift to me. It is an honor to be a member of this Hospice team and I can truly say that my work is not a job, but a mission to be able to help others.

Written by Sue Lycan, R.N., C.H.P.N.
Community Mercy Hospice