My first exposure to Home Hospice Care was back in the mid 1980’s when a neighbor of mine abandoned his painful attempts to find a cure for his liver cancer and came home to die. He was only 59 years old and had been more a father to me than my own had ever been.
He was a fighter in all things and many of us felt betrayed that he had given up his treatment at the cancer center at the University of Houston. Hospice care was largely unknown back then – it was not allowed as a Medicare benefit until 1986. It was also largely misunderstood. I recall a particularly insensitive neighbor speculating that perhaps the family could not afford to allow my friend to die in a hospital.
What he taught us all was that home hospice care allowed people to die surrounded by family and friends instead of doctors and nurses. A nurse came every day to offer support and monitor the painkillers that allowed him to be aware of what was going on around him without being in intense pain.
What he wanted for all of us was a chance to say goodbye in familiar and warm surroundings. And so we did. It was indeed a long goodbye, as hospice care sometimes is but somehow the setting and the community present made it less bitter and far more sweet.
I worked evenings at the time so I was able to visit him during the day. I had the chance to thank him for all he had done for me and all the many things he taught me. He thanked me and made me promise to pass it on and continue to do for those I met in my life what he had done for me. And I have tried my best to fulfill that promise.
Relatives and old friends from around the country came to spend a little time with him. He lasted for eight days before leaving us all behind. I was working at the time but no matter as I had already said my goodbyes.
I think back to that long goodbye every time I hear of some friend passing on in a hospital or nursing home. At first, I wondered why anyone would not choose home hospice care. Later I learned it was not my place to judge.
Faced with the decision of where my own mother would spend her last days, I had second thoughts. She was comatose and the hospital told us there was nothing more they could do and we had to look for hospice care for her.
The nursing home she had been in before her final trek to the hospital offered hospice care but it was not a home. My brother wanted her at his home but for the first time I realized a potential disadvantage of home hospice care. The room in which your loved one breathes their last remains after they are gone. I wondered how long it would take my brother and his wife to view the room as what it once had been – a guest room.
We ended up taking her back to the condominium where she was still living by herself at the end. It was another long goodbye as she lasted 10 days. There is no ideal way to say your last goodbye to a loved one. But when my time comes, I hope I have the opportunity to be surrounded by those who have been a part of my life for one final long goodbye.