We have been in Germany, where my partner is originally from, for two weeks. The closest friend of their family is 87 and in the last days or weeks of his life. It was very frustrating on several levels, not the least of which is my inability to understand or speak German to him. So I just had to sit there and smile and say hello and good bye and see if I could figure out what was being said by picking up a few words. Before I started ministerial training and went through the death of an aunt and two grandparents, I had what I think could reasonably be described as a death phobia. It started when I was in elementary school and went on for a very long time, really up until the past few years. I was very overly preoccupied with people I love dying, very nervous when they left to go to the store or on a trip, or really anywhere that something would happen to them. I thought about death a lot – my own or my loved ones – and generally couldn’t talk about it or think much about it without getting quite distraught. This was not a normal “gosh I don’t want my loved ones to die.” It was really a huge problem.
Taking a classes at divinity school and being a student intern minister, as well as needing to be strong through the deaths of my family members, helped me get over this. It just sort of faded away. Thank goodness.
All of this is to reflect on the challenges of dying well, both in the U.S. and in Germany. Something I could not have even began to think about until recently. My family members all had hospice care, which somehow I imagined to be widespread in Germany which it is not. My grandma died with friends and family around her, people coming and going either to simply be present to her, or to bring food, or to share memories – to laugh, eat, and cry. This is how people should die. In their homes, with their loved ones, with skilled nurses and hospice workers asking the right questions, preparing people for what is to come, reassuring, and listening.
Frederic is dying in Germany alone in a room in a home for old people or people with disabilities. No one has spoken to the family, nor to my mother-in-law (who is his best friend) about what to expect, how to best be with him, nor have they spoken to him in a respectful or loving way. He is a patient. He said they are rough with him when they bathe him. We were there to say goodbye before our flight, and although he is confused and can’t talk much, he said, (in German), “Gipsy, I want out.” Gipsy is my mother-in-law. He wants out.
He is an old person that they are waiting to die, washing only because it is their job, not cleaning him up in his bed soon enough so that when we came in he was laying there half naked in his own waste, distraught and confused. And alone. Dying alone is horrible.
It was interesting to see my minister-mode turn on so quickly and so naturally, and it was reassuring to me about my calling. What were his wishes? Perhaps he wanted to talk about his life? Did he have a living will? Perhaps you should offer to put the bed up a little more? I left when I saw him half-naked, knowing of course that he might prefer privacy from a visitor. Perhaps we should only enter the room one at a time – three of us seem to overwhelm him… all these little things I did and thought that seem so basic, but seemed also desperately needed in a situation where everyone was sad and upset and confused.
It was painfully frustrating to not be able to do more. To know that he lay alone in his room because it was simply not the thing to do to be there. His family was not there even every day. He was in the care of underpaid staff.
This is not to criticize anyone involved really, because it seems like this is just how it is done, but to wish for a different system. And to look forward to being able to contribute more through my ministry to the idea of dying well. Both through example, but perhaps eventually, through training others.
As my partner and I think about the possibility of a baby in the coming years, and what it takes to make a good birth and bring a life into the world with minimal medical intervention and trusting the wisdom of the body and our love for ourselves and the new life, and it seems equally important for us to remember what a good death means. How we can slip from this world to the next with as little pain as possible, and as much love and comfort as possible. Because we do not like to talk about death, and because we don’t like to think of it, it seems that it can too often be put in a small room in a big institution, and we try to leave it either to staff who can change adult diapers, or to doctors and machines who try to “save us” from what we cannot be saved from – old age and the slowing down of bodies that just happens.
We are in the process of getting life insurance, and our finances more in order, along with arranging our own wills and living wills. It seems important for us all to do this to save our families from the challenges that Frederic’s family has faced in deciding how to proceed and what to do as he faced his last moments on this earth. Let us all do this to save our families the anguish it can sometimes present and help making answering hard questions easier at the end of life, as well as to think about what a good death would mean to us.
I have also faced the challenge of comforting my partner through all of this. I am a firm believer in some sort of world/life after this on here on earth, and he is not. Wow, does that make it hard to comfort someone facing death. Often “They have had a good life” can be a good approach if that is in fact the case – however, when the dying person has not had a good life – and there is nothing more to look forward to, that appears to be even more of a bind. But perhaps that is for another post.
In peace and prayers for Frederic as he leaves this earth,