On Dying Well

July 22, 2007

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,

Elizabeth


Grandma Update

May 4, 2006

A big thank you to those who emailed me or posted comments about my Grandma. Her funeral is on Monday — she passed away peacefully on Wednesday with family around. In a very Kentucky sort of twist of events, the funeral was supposed to be on Saturday but it had to be changed to Monday because it interfered with the church tractor pull. At least some people in this world have priorities straight :) Of course, she would completely understand. I found it amusing.

One big disappointment is that I won’t be able to go to New York City with our church youth group. I went to New York City on a “Summer in New York” trip in 1996 (ten years ago!) with my youth group and have been back many times with various groups to learn and teach about all the things in New York City that one does not learn about in rural Ohio. Urban poverty. Different cultures. Coffee shops (I had my first cappuccino in New York at the Used Book Store Housing Works Cafe which is still in operation). Homelessness. Ultra-rich people. And all sorts of other things. I lived at the Bowery Mission. The youth group will also be visiting the Bowery and seeing a service like no UU service they have ever seen. If you want the free meal in the evening at the Bowery you are required to go to the service. Sort of like food for oil a la Iraq only it is food for God. There is a big push to get people saved as soon as possible. There are a few amen-chanters near the front and many of the others sleep through the service. I can’t wait to hear what the youth think of it. Or Tricia (our minister) for that matter.

Wish I was going. But New York will always be there.


Times of Crisis, Need of Comfort

May 3, 2006


I got off the phone with my mom about a half-hour ago and she told me that hospice says that my grandma will probably only live another few hours or maybe a day. What surprises me a little is how I run back to those religious places in my life that are most comforting even if I’m not even sure I believe them. I want to kneel down and pray. I want to talk to God, not the UU God that I know, that presence that is within us and among us, but my old God that was this big guy with loving arms living up in the clouds. In times of crisis and sadness and just struggle, there is something about going back to that non-intellectual place we were when we were younger. That love of familiarity and that non-complex deity that was just perfect and loving and comforting. I guess the great thing is that the divine can be both of those things. God/dess doesn’t always have to be complex or heady or in need of ten different adjectives (the great mystery, the spirit of life, interbeing…) but the divine is all of those things and more. For me, at least, both simple and complex. Both personal and diffuse. The great thing, theologically, for me about UUism is that we acknowledge that different paths work for different people and that we are all just sort of fumbling toward making sense out of something that is truly beyond words. Beyond our words. It is nice not to have the responsibility or the pressure to systematically develop a theology where it all fits together, that really gets to it all, but to say “This divine, this non-divine, this something, is so great, so loving, so complex, that we simply cannot get all of it at once into language.”

So, Grandma, mother of 12, grandmother to 26, wife to Arnold, devout Catholic, peace, and love, and gratitude to you as you go to that which is beyond our words.


Dying

April 30, 2006

My grandma is dying very quickly. She was diagnosed with lung cancer about two month ago or so, and we soon found out that it spread to her bones. I have planned to go see her two times, but both times ended up canceling because I wasn’t feeling well or it seemed so hectic to try to go down to see her and weave around the throngs of family there and try to talk to her while she was feeling bad and…. well, it just seemed to make sense to wait and she was doing quite well until just recently. And she is not doing well now. She can barely walk or go to the bathroom herself. She knows she is dying. She is 81 and has nine children and 32 grand children and feels that she has lived a good life. That said, I don’t think it makes it any easier for the family to watch her increased confusion, decreased ability to do adult things, her increasing pain, that fear that she has even as a Catholic that she can’t be sure what comes next. I can’t help but be angry that my mom has to take care of her again – my mom did so much taking care of my grandma and her brothers and sisters when my mom was a child and my grandma was sick then too. And of course it doesn’t feel good to be a little angry at someone who is dying, but of course I’m sure it is normal. What it really comes down to is that when people die, it just sucks. The process typically isn’t pleasant. The feelings it brings up aren’t pleasant. I know, I know. Not very ministerial, ehh? I mean, this a time to celebrate life, pass peacefully into a new place, and so on. But it just isn’t that easy, at least not for me. It sucked when my Aunt Carol died of lung cancer two years ago, it sucked when my Mammaw suffered for five years before she finally died, it sucked that a possum ate my sweet little kittens Wilbur and Lilly when I was 10, when Luke (another cat) got hit on the road, or getting that call in the middle of the night that my cousin committed suicide. I know I’ll need to develop a better spiel on this before I do my CPE with hospice (planned Summer 07), but sometimes I think people try to flower up death and make it a beautiful process and celebration of life and there really isn’t anything nice about not being able to go to the bathroom yourself or your bones being painfully eaten away by cancer. And ministers need to find a way to acknowledge the messy, horrible parts of death and not just make it some sort of divinity-school-land fluffy thing about beauty and hope and transition and cycles. It is horrible, in many ways. And I hate it that my grandma has to go through it and that my mom has to suffer too.

A short p.s. I am listening to Third Day which is a Christian band I listened to in high school and there is something comforting about it. Even though the way they sing about God is not quite how I would frame it, it is great to hear the passion and joyful aching about God’s love. And it reminds me that I really do relate to God language and it makes me more irritated about that speaker yesterday (see previous post) making fun of people who believe in God or talk about God in a certain way. In times of death and dying and deep deep darkness that doesn’t seem like it will ever go away, God whoever whatever he or she is has been a great person to be with me. And, even as I make fun of Revolve magazine (see two posts ago) I also need to remember that that type of spirituality, no matter how sexist and annoying I find it, can bring great joy and comfort to girls who ache. I just hope that in my life I can carve out a space for a God that is there for you when you ache, and even maybe a Jesus who is there for you when you ache, without all the other baggage about how nonChristians will go to hell and men need to be in charge.

Enough for today. As I wrap up Gracie (my kitty) has come up and licked my nose. Animals are so good at caring for us. That’s all for now. E