Glenda Sinclair, RN, executive director of the mid-Mississippi program, knows firsthand how difficult end-of-life care can be without the valuable help of hospice.
Life — and Death — Before Hospice
Today I am executive director of three hospice locations in Mississippi, knowledgeable of all aspects and services of hospice care. However, in 1980, I was the mother of a toddler named Carolyn who was diagnosed with Neuroblastoma, a form of childhood cancer. I was young and uneducated to the fact that children even had cancer.
Carolyn was diagnosed when she was 2 and died five days after her fifth birthday. We had three long, terrible, wonderful years together as we battled her diagnosis. While we had some great days early in her treatment regimen, we had some extremely difficult days during her last six months of life. During this time we accepted the fact there was no cure for Carolyn, so we worked with the doctors diligently to provide her with the best, most pain-free end of life possible.
Our young daughter had caring and wonderful physicians who were constantly available to us for her needs. However, we wanted to have her home as much as possible during the last months of her life. Unfortunately, because we lived in a small Mississippi town more than 100 miles from the hospital, that was difficult to accomplish.
Carolyn passed away early in 1983 before hospice was available in our area. The word “hospice” was never spoken during the time Carolyn was treated.
In our hospice programs we encourage our colleagues to share their own personal hospice story if they have one or explain why they chose to work in hospice. Many tell of the wonderful care that was provided by hospice professionals to their friends and family members in the past that so impressed them until they chose a career in hospice. Certainly seeing compassionate and excellent care given to those close to us can lead us to desire to provide such care to others.
Many of our colleagues share such stories. I myself can share instances since I have been in hospice where our colleagues provided such care to my friends and family, as well.
But when I share my hospice story, it is much different from this. I tell Carolyn’s story and the fact that hospice was never mentioned because it was not available at that time.
While we were blessed to have great professional and family support and were able to provide good care and support to Carolyn, I often think of how I desperately needed the support and services hospice could have provided. The many days we spent at the hospital could have been spent at home, had we had the services and care of hospice. And Carolyn was not able to die at home as we would have chosen.
I think about our excellent colleagues and how wonderful it would have been had the doctors been able to send us home with an excellent social worker such as Heather or Shannon or a chaplain such as Brother Millican or one of his fellow chaplains. I needed their care and support so much and I didn’t even know it.
How comforting it would have been to know I could pick up my phone any time day or night and have one of the caring and qualified nurses we have come to our home to care for Carolyn and relieve her symptoms or to have one of our talented certified nursing assistants to assist me in bathing and caring for her. I can’t begin to explain what that would have meant to me. If we had had hospice care, I’m sure I would now look back and say I could not have made it without them. I honestly don’t see how I did.
Spreading the Word
After facing caregiving without hospice, I now have a sense of urgency to inform the communities we serve about hospice care so others don’t have to experience what we did. It’s important that they know these services are available and not miss out on the gift of hospice as we did with Carolyn.
During those wonderful, frightening years with Carolyn, there was nothing else we could have done and I am comforted knowing we did everything we could do for her during that time. I want families today to have that same comfort in the future by being equipped with the knowledge of hospice services and availability so they can make the best decisions for their loved ones and family members. While it is their option to not choose hospice if they so desire, I feel it is our responsibility to give them the most information possible to make the best decision for those they love.
Being someone who was not able to receive the gift of hospice, I can understand the need to share our knowledge with those we come in contact with every day. I work constantly with our teams to help them understand what valuable information we have to share.