For the past ten years, hospice has been a huge part of my life and its impact on me has been immense. I have worked all of that time in one agency as a hospice social worker or bereavement coordinator. I have been privileged to be a part of patients and families lives before the death and their families after the death.
Every hospice experience is as unique as the individuals who are living it. Every family comes with its own unfinished business and differing opinions about what hospice and what dying is supposed to be. Regardless of similarities and differences, one thing remains the same: Hospice is there to help that patient and family be as comfortable as possible during a very difficult time.
Some people fight their dying with every last breath even when treatment was discontinued weeks or months before. Some people wait and hope for it to come quickly. Either way, though their intent is usually not to teach us, very often we learn life lessons just by being in their presence.
This story is not about me and the work I do. This story is about the pain of standing on the other side, of being in the other group. The families whose loved ones are dying, the ones who feel helpless to do anything about it, and whose hope has been stripped from them.
I learned this when my forty-four-year-old step-daughter, Kelly, was signed into hospice by my husband. Kelly had been a part of my life since she was twelve. I loved her like my own daughter. I could not fathom that the very people I worked alongside of each day were now caring for Kelly… were now caring for me , as part of her family.
I hated it. Not my co-workers or my agency. They were wonderful. I hated that she was dying. I hated that there was a need for hospice. I just wanted to go back to the fateful day of her surgery and turn it all around.
Kelly had gone in for a routine one day surgery. She was expected back at work the following day. Some things went horribly wrong and immediately following surgery, without even making it into the recovery room, she arrested and was resuscitated.
She sustained major brain damage. For three months, we stood by her bedside, various family members always with her. She was unable to do anything. It was the most heart breaking thing I ever experienced.
When my son died at fourteen after being struck by a car, it was horrible. He was gone in an instant with no chance to say goodbye. But he did not suffer. It was immediate. With Kelly, it was like a sudden death but at the same time a lingering one. She was already gone when they wheeled her out of surgery. She would never again speak to us or follow a command though we and the doctors and nurses tried to get her to respond the damage was too extensive. If she survived she would never be able to do even the simplest thing.
She was there physically though and that was a double edged sword. It allowed us to tell her again and agin how much we loved her but it also meant we had to see her in a way she would never want to be. One month after her surgery, she was released from the hospital to the very nursing home where she had worked for the past thirteen years One month before she died, she was admitted to our hospice. She was being cared for by her co-workers and mine and surrounded by family and friends right up to her last breath.
Though I was compassionate and caring before Kelly’s admission to hospice, I learned at a high price that some days the support of others means the world, some days nothing matters or makes a difference. Dying is hard even when the dying are kept comfortable. It is hard on their families and everyone who loves them. I knew that before, but now I know it in a deeper way that comes from having lived it on the other side. It also gave me a new appreciation for what my co-workers do.
They made us feel like we mattered everyday whether they were present or not. They did this through being there with the touch of a hand or a hug, through phone calls to check on Kelly and on us, through collaboration with the other hospice team members to make sure Kelly was getting the very best care and kept as comfortable as possible.
Hearing my loved one’s name spoken by my co-workers was the hardest thing and the best thing. Hard to know she was on hospice but the best to know who was caring for her.
Deb Kosmer 2011