January 6th, 2014
I feel that some forgiving is in order. The kind that means I must find some forgiveness to extend to another. But I need to forgive institutions. No individual persons need be included…. though I can make out some faces, in the murky soup of “this is how we have always done it” leaders. I need to forgive a system that has become far more powerful than the sum of their dangerously complex parts. One that I watch cause increasing amounts of suffering, while it purports to be alleviating it.
I feel I must forgive the transgressions of a system of care that dictates how we care for frail elders in most American institutions. I am sure other institutions could be held under a similar microscope, but it is health care that I have known the best and loved the most. I describe myself as a systems thinker with a front line focus. I have thrived on the crazy-making environments where activity levels are dangerously high for those on the front line, and that includes those receiving, as well as providing, care. That activity swirls around all manner of suffering that is met with every possible medical intervention to stop it. But so often it is just not possible to make it stop. And that’s when I found myself needing to lie. To explain to patients, their loved ones and the concerned staff members struggling to provide the care they felt their patients deserved…I had to lie. I had to pretend to believe that institutions and those who led them were truly most concerned with conditions on the front lines of care. And not so much the monies generated there. On these not so fine points, I could go on and on.
As you may already know…the book is coming. But I feel this forgiveness must come first. Let the anger at the institutions be the initial impetus for writing, but let the forgiveness inform my writing so that what I share is full of love and hope for a better end of life for frail elders. I am praying on it.
January 3rd, 2014
The truth is I’m afraid. Just as scared as everyone else I suppose. But maybe even more so for having witnessed the experience of frail elders as I worked to bring comfort and kindness to those in my care.
I know that my love and patience showed in my practice at the bedside. I know it was evident in my efforts to make change happen in institutions that meted out care to elders as though it were a punishment for their belief in the lie that we could fix their ailments of old age and make life last. My concern for the insensitive and sometimes cruel treatment of elders caused me to “rock the boat” that wanted stay the course and just do the job, follow the orders and maintain the appearance that all is well. I grew to question accepted practice and to ask polite but pointed questions of those in charge. My most frequently asked question was always “why are we doing this?”
“Please explain to me why we are causing pain as we stick needles and tubes into places they do not naturally belong. Please help me understand why we are tying this person down so they can’t remove those tubes. Please tell me why we are not honoring the hours days and weeks that are left by providing an environment that offers interesting sights and sounds and the company of caring others and all that is required to stave off boredom and loneliness. Please tell me why the monies must all be spent to prolong life rather than to enrich it. And most of all please tell me why we are not listening to the ones who say…I am ready to go now.”
And it is all this and more that strikes true terror into my heart as I fear the control that others may take of me at the end. The possibility of those tubes and those needles and the boredom and the loneliness and the angry hurried hands that will touch me as my body is cleaned in places I do not wish to have touched at all.
I fear it. All of it. Because I know what is possible and I know that there is only one way I can be certain of avoiding it.
November 20th, 2013
I recently had the opportunity to speak with groups of folks with an interest in death and dying – a group of geriatric care managers and a college class of young folks pursuing careers in health care. To both of these groups I say “Thanks so much for allowing me to plant seeds for the elders you know, and will come to know, as we all go forward in this life. I am certain that you will be listening in a different way to their needs and wishes. I know this is not easy for any of us.”
And last week I attended my first Death Cafe in Rutland,Vermont. (www.DeathCafe.com
) I loved it of course. We split into three groups of 6 or 7 and discussed just about anything about death that we wanted to. Apparently, I am a disruptive element since our group was the only that did a lot of laughing. I know it is extremely hard to talk about death for many folks, but it really is permissible to smile a bit and even laugh at the absurdity of our common experience. I want to believe that somehow humor may make it a little easier to go to the scary places and make them a tiny bit less scary because we have said the words”death and die” right out loud.
th Cafe please.
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.