November 20th, 2013
September 27th, 2013
I love to hear that some folks (MD’s especially!?) are getting their end of life wishes tattooed on their chest – right where they would put the paddles if the EMT’s or MD’s were getting ready to zap some jules of electricity into the unresponsive person to bring that person back from …whereever. Would a big old” DNR”even stop them. I wonder. Well, in my estimation it is absolutely worth a try.
With considerable thought, I would want mine to read “DNI (Do Not Intubate)” I would definitely want to be allowed to go if some sudden event caused me to be unconscious – an MVA, for instance. But drugs that The percent of those unresponsive from an MVA who are able regain a meaningful existence is freakishly small. Soon I will be sixty and I have had an absolutely awesome life. That is why I can honestly say even now, that it would be okay to go rather than live to be drastically diminished in my ability to function. It is the intubation that really has the ability to prolong a sudden body fail into a tragically drawn out demise.
I foresee a time when I would want to change the “I” to an” R” after further aging causes all systems to be used up a bit more worn down. But the design properties of those two letters will make that easy. So I will start working on the design. It will definitely be draw on the “Courage my Love” logo that I love so much.
September 17th, 2013
I recently said goodbye to a friend. We met nearly one year ago when I came to her house to sit while her carer took a break. At first I kept my conversation to a respectful minimum. I waited to see what she wished from me. I sat next to her hospital bed and we watched the news on our local television station. Slowly we began to “gab” a bit. Then a bit more – until that was effortless. But we also had days when I would say next to nothing – following her lead. She always apologized for these quiet days but of course I would have none of it. It was my pleasure – chatting or none – to be removed from my own bizzy-ness for a few hours. And it really was my pleasure.
While we are often admonished to be compassionate, we forget that in order to be of help there must be those in need of help. How often did my friend apologize for needing the help I gave? Nearly every week of that year it seemed. But she gave me an opportunity to do what I am asked to do – be kind – and it was almost effortless. Without her acceptance, I could not have done what needed doing. I will miss her.
August 14th, 2013
Not much feels good about watching the way frail elders are cared for at the end of their lives. I have been watching and listening to the experience of frail elders and their loved ones for more than twenty years now. As I became more aware of issues surrounding hospital and nursing home practices – I became angry and sad. As the years went by, I worked within a large health care organization to seek change in policies and procedures. I led discussions, promoted patient-centered practices, brought front line staff together to address their growing concerns for what they were being asked to do when caring for patients. I sat in meetings where topics of end of life care were discussed ad nauseum with no real change in bringing comfort and dignity to frail elders. I was called “courageous” by my colleagues. I met nurses who were afraid to speak openly about what they observed. I was not popular with those in charge of folks like myself and soon it became clear that my participation in the organization was undesirable. I suppose I became a little too courageous.
But I didn’t feel courageous. I felt defeated and sick in my heart and my soul. I left the front line of nursing more than three years ago now. I am just beginning to see the positive nature of this change in my life. My interest in matters involving frail elders has continued as I wrote more than 70,000 words here explaining concepts of allowing natural death. I read everything I could find, but most importantly, I listen to stories of real people. And it is clear that suffering of frail elders continues and loved ones are robbed of the memory of a peaceful passing by hospital policies and procedures. Stories of “unwanted” care perpetrated on those who have prepared Living Wills that are not honored has brought me to tears. I have only grown more sad and angry.
I have said that this is work that will not let me go. I have been encouraged by many who live the stories, on the frontlines of health care, that I only hear about now. I understand why it is not safe for them to speak openly about these topics when employed by institutions that provide care to elders. But I am no longer in the employ of any organization. It is safe for me to speak. So I will. Because still after all these years of looking listening and learning about frail elders at the end of life…not much feels good.
February 2nd, 2013
The fact that folks are discussing the end of life care we want vs. the care doctors choose for themselves would point to a pretty big difference between the two. I’m gonna go out on a limb here and say…that’s a problem. Listen to a physician’s discussion of the topic. Educate yourself. Take action or someone else’s actions will take you.