The Love and Care of John Paul Mays
Sometimes truth isn't just stranger than fiction, it's also more interesting. Through a series of events, people being in the right place at the right time, the personalities present ready to work together and learn from one another, you make something extraordinary happen. What you have is a recipe for a miracle.
In-Patient care resides on the third floor of Memorial Hospital of Converse County. And you may not realize with all of the patient rooms, nurses stations, meal delivery carts you pass by that for over 20 years this was someone's home. John Paul Mays called the third floor home until September of 2016, and he called those who cared for him his family.
Diagnosed from a young age with spinal muscular atrophy, JP had already survived longer than most. It was about twenty years ago when JP Mays first arrived in Wyoming, following a girl. A transplant from California via Louisiana, JP followed his nurse to her hometown of Casper, Wyoming in the hopes of continuing their relationship, when that didn't pan out he was left looking for longterm care.
This is when he met the staff at Memorial Hospital of Converse County in Douglas. Presenting to them as a respiratory patient in need of full and long term care, the Nursing and Respiratory Therapy staff at first grappled with exactly how to provide this service. Most of the respiratory patients at that time stayed just awhile. JP however stayed on, eventually appointing his room with every electronic one could imagine and as well decorated on all available surfaces with Oakland Raiders paraphernalia. He also had a larger than life personality to contend with as the nurses soon found out.
"John Paul was cantankerous. He was full of life, though kind of a control freak, he liked to have things a certain way," recalled 3rd floor nurse and friend, Shelly Lopez. "I mean he only had control of certain things, so if those items got skewed in any way he would make his opinion known. But through it all he was a teddy bear, he had a heart of gold."
Working from the Third Floor, JP was employed for many years by the Bureau of Land Management as their webmaster. Working remotely from Room No.312 he oversaw their site, servers and all needs relating to how we the public engaged on line with the BLM. He also loved technology and it wasn't odd to see him in Casper at Best Buy purchasing new equipment. But with an independent mind such as JP's came certain limitations from his disease process.
Having been in a wheelchair from the time he was five, and on a ventilator from a young age as well, JP had to establish bonds of trust with the nursing staff, "John Paul relied on us for all of his care: dressing, feeding, bathing you name it we did it for him. So with that, comes a lot of trust," continued Lopez. "To gain John Paul's trust was not an easy thing. He would test you and push you to your limits. And once he knew you were at your limit or you broke and told him you were done then he loved you and you were fine after that."
JP often knew which staff he wanted to assist him and which he didn't. And the nursing or respiratory staff could be found in his room even after their shifts had ended watching a movie with JP, or simply sitting with him keeping him company as one would a brother. Members of the nursing staff at MHCC would accompany JP on trips to Deadwood or Steamboat, rallying along beside him as he played poker or toured the sites. Sometimes just taking him for a walk if the weather was nice enough outside or a trip downstairs for a coffee.
Lopez remembered how difficult it was when nurses would move on, "It was really hard for him when staffing would change. If somebody would leave and new people would come in he would have a really hard time with that change because we were his family and he would get attached to us."
"He had a unique bond with each and every one of us. He was my brother, and I was his sister and we fought like siblings, but we also loved one another like family."
"JP was a very unique individual, very interesting and you're talking about a gentleman that had a disease process that was very debilitating, but he had this drive to be successful," recalled Joseph Baldwin, his respiratory therapist and friend. "He had a zest for life, a bigger love for his Oakland Raiders…and it was a pleasure to help take care of JP, but it was more a pleasure to be a friend. He and I had an understanding that when I was taking care of him that it was a provider and patient relationship. But after work we would sit there and catch football games when I was here, watch movies. He got to be a very close friend of mine."
Most patients with JP's type of disease process don't live as long as he did. Most succumb rather early in adulthood. Sometimes patients like JP can make it into their early thirties, which prove to be the exceptional cases. JP made it into his early fifties. "And that is a testament to the care he was provided here," stated Baldwin. "Everybody who took care of him really doted on him and made sure everything was just as it had to be." Everyone took such excellent care of him, that the normal causes of death for someone with his diagnosis: pneumonia, infection from bed sores or catheters were not an issue.
JP often stated, "I'm living on borrowed time here. I can't believe I've lived this long."
When asked how he survived for so long Lopez reflected, "His will had a lot to do with it. Like I said he was very stubborn. He had a love for life and a love for the people who took care of him. I think he lived for us. As the time came, and he started getting sicker and we started having more conversations about what's going to happen [about his passing] he was so scared to die. I think with all of us, we were just there for him and we were like 'you are not going to be alone, we are going to be there with you.' And I think once he knew that we were going to be okay, he was okay."
"He had something to live for… the people here they weren't just his caregivers, they were his family and he knew that. He would constantly tell you that you were his brother or sister," concluded Baldwin "He felt that sense of family that he never had, and we felt that same kinship with him. It wasn't just that he was a patient. And that's the joy of working in a small town hospital. Here you get to know your patient. And it's not just him, you get to know each and every one who comes through the door. They all become family."
Lopez added when asked for final thoughts on JP's care, "I think the care he was given here, was something to attribute his longevity to. He never would have gotten that level of care in a nursing home. That one on one care would not have happened. He had one CNA, that was his CNA from the time he got up to the time he went to bed. There was usually someone in there with him. This was something that the hospital just did for him, that they provided until the end. But we did it for him… because he was family. We were his everything, and he was our everything."
John Paul Mays was recognized by the entire hospital staff with a memorial service at his passing, then honored at the annual Christmas Party with the Legacy Award. Taking the stage, Lopez and many Third Floor nurses shed tears and writings bearing witness to the love they shared for their patient, their brother. Emotions overwhelmed those gathered as they recalled the emptiness in room 312, but that they knew they had born witness to something special.
The third floor staff at Memorial Hospital of Converse County recently was recognized by Press Ganey in November 2016 for their excellence in providing Patient Centered Care. But it really is an acknowledgement of a fact one man in particular knew for over twenty years. He was the lifeblood of their floor, and their care their love extended and added quality to his life. Thank you to all who cared for and loved JP. You proved that bigger isn't always better, and that our patients are our family.