Tag: End-of-Life Planning

Tending to Endings (ten)

There is an internet meme that includes some version of the question, What would you do today if you knew you were going to die next week?

Sometimes I think our collective denial about death is so deep that we could just as easily say, What would you do differently if you knew you were going to die? 

Eventually. Someday. Ever.

My own denial rears its head in interesting ways. As I’ve launched this project to study end-of-life matters and explore resources in my community, I occasionally worry that by paying attention to death I will somehow call it to me early. Plus, won’t people start thinking of me as that weirdo who is always wanting to talk about dying?

I believe in living for the day. I believe in putting energy into that which we can positively change. Why focus on the ending when there is so much that comes before? 

The truth is I do believe there are times when blinders are helpful. One of the hardest things about being a caregiver to a loved one in serious decline is having to navigate our own grief while helping a person who is struggling as their body and brain give way. It is common to tell those caring for loved ones with Alzheimers not read ahead in the books about the disease because it will be too disturbing.

I can’t say I always disagree. At times I went into survival mode just so I had the energy to cope, knowing there will be time to process the myriad of emotions later.

But what if we didn’t wait until the end–or until we were in crisis mode over someone else’s ending–before we accepted that there would be one?

Of course we know we will die. But many of us have had that experience of knowing mortality differently, more deeply, after we brush close to death for one reason or another. I think my question is this–Would we benefit from rubbing up against death earlier and more often?

A few months after my mom died, I soaked in the hot springs in the mountains with my friends Mary Ellen and Malia, both of whom had also recently lost loved ones. We needed healing and a chance to talk with others who wouldn’t think it strange or shocking, all the details of death.

“We should get this information about dying much earlier,” I said. “It’s a lot, when you are grieving and making decisions about where to have your mother’s body cremated and finalizing insurance claims, to also come face-to-face with your own mortality.”

Mary Ellen’s eyes brightened, “Maybe it could come in an owner’s manual you receive upon birth: You are a mortal being. This body will breakdown at some point. Here are some helpful instructions! We could include a packet with advanced directives and options for what you’d like done to the body when you are through with it!”

I laughed. “Or maybe there should be a class in junior high?”

I think we sometimes assume we must have a major life altering event or a cancer scare in order to face our own mortality. And yes, that often works. But there are many cultures in which death is a presumed part of life.

A special issue of Yes! Magazine explores death and includes and overview of rituals and traditions of immigrants who bring the reality of death into everyday life. And as recently as a hundred years ago, family members of all ages had more opportunity to interact with those close to death even here in the U.S. because most people still died at home.

Krista Tippett, host of OnBeing recently was interviewed on Preach, and she spoke about attending Ram Dass’s final retreat in Hawaii a couple months before he died. Ram Dass had been living with the effects of a stroke for the last twenty years that interfered with his ability to move and speak. But he still ran retreats twice a year at his home, and these always included people who were chronically ill and near death. Tippett talked about why it was a profound experience for her to be with people who were actively dying:

It sounds strange to say, but it is incredibly life giving to have the fact that we will all die very openly in our midst, which just led to this really intense dwelling with what life is. And the other thing about this retreat that felt spiritually nourishing to me is that it was a really intergenerational gathering.

This intergenerational aspect is interesting to me because wouldn’t that be one way for all of us to overcome the collective denial of illness and death? To be around people who are near death at different stages of our lives.

There has been movement towards this in Alzheimer’s care. Some of the recent research about the mutual good of relationships between toddlers and Alzheimer’s patients has given rise to programs integrating nursery schools into memory care facilities.

Alive Inside, the documentary that won People’s Choice at Sundance in 2014, also has inspired a host of youth projects including pairing high schools with care centers for experiential based service learning. I’ve included a link to the trailer below, and I highly recommend the entire film.

I do believe we have something to gain in shedding our denial and making peace with death over a whole lifetime rather than seeing it as a task assigned upon getting a terminal diagnosis. In one of my favorite books covering this topic, Anam Cara, John O’Donahue makes a case for just that.

To continually transfigure the faces of your own death ensures that, at the end of your life, your physical death will be no stranger, robbing you against your will of the life the you have had; you will know its face intimately. Since you have overcome your fear, your death will be a meeting with a lifelong friend from the deepest side of your own nature.  

One thing I know for sure having drawn close to my mother during her illness and her final days is that I am less afraid of death and more excited about life than I have been in a long time. This is not what I expected, but it is true. I love life more, and I’m less afraid. 

Because of course even endings aren’t all bad. Once we learn we can stand them, we see a whole lot more, including the person we love, including beauty and life and grace, even in this.

Thank you for reading,

Laura

If you would like to receive Tending for Endings each Friday, please leave your email address below. It is ad free and cost free and I will not share your information. My aim is to help build community and conversation around end-of-life matters so we can better support one another. If you would like to leave comments and you don’t see a place to do so below, click here. You may also reach me at laura@laurastavoe.com.

Tending to Endings (two)

I first heard about Death Cafés when they started receiving press in 2013, and I didn’t think they were for me. The New York Times compared them to salons in the European tradition, but where the topic was always death. I was a live-for-today person. Death was in the future. Why focus on it?

But last summer, when my friend Mary Ellen asked me if I wanted to attend a Death Café, I said yes. What changed between then and now is that I lost people. Also, I entered middle age and began suspecting I really might be mortal. Also, I had seen death up close and it was not what I expected. Most of all, in caring for my mother during the end of her life, I became aware that death is not actually in the future. It is happening all around us every day. Almost everyone I know is walking through end-of-life issues with someone close to them.

And yet, many of us find it difficult to talk about these experiences. More than religion or politics. More than anatomically correct names for genitalia. Death is what shall not be named at the Thanksgiving table or almost anywhere. It is a rule no one told me but that I have always known: Death is private.

I’ve been to exactly two Death Cafés, so I’m no expert. But I wanted to share my experiences here as a potential resource for those looking for more conversation related to end-of-life issues. The Death Café website gives helpful information, particularly on what Death Café is not. It is not a class or a grief support group. It is not a place to proselytize or advertise. It is a place “to eat cake, drink tea, and discuss death.”

My first was held at the Unitarian Universalist Fellowship in Garden City last September. When I sat down, I was surprised to find myself next to a friend who I hadn’t seen in years, a pediatric oncology nurse. Of course, I thought, there are other people who are aware that death happens all around us.

The groups were facilitated by people with career knowledge about death and dying: a social worker, a therapist, a Buddhist chaplain. But the conversation was unplanned and diverse, and our facilitator mostly kept it moving with gentle prompts and questions.

Death Café isn’t a class, but I learned things. Participants came with a wide range of perspectives—healthcare professionals and social workers and people interested in the death positive movement and quite a few caregivers. It was interesting to hear people talk about the end-of-life from so many angles.

Our group moved easily from one topic to another. We talked about ways to begin the conversation of advanced directives with family members; about what it was like to sit by a loved one’s side as they died; about what people envisioned as a good death for themselves.

Our time together included a few teary moments and lots of laughter and interesting questions that got me thinking. But probably the group’s biggest gift for me was how ordinary and open the conversation seemed. Death Café is a place where talking about death is expected. You don’t have to get over the awkward hump of introducing a topic many find difficult to discuss.

One reason I have hope this will become easier in everyday life is because it already has, maybe not with death, but with birth. During my mother’s and her mother’s generation women often didn’t know what to expect when they were expecting. Pregnancy and birth were considered too private to discuss: too scary, too painful, too personal. One consequence of keeping birth (or death) secret is that an important life transition becomes viewed primarily through a medical lens.

I had a complicated twin pregnancy and will always be grateful for the healthcare advancements that saved my sons’ lives. But the story of their birth was much more than a medical journey and so was my own. New motherhood changed my identity, family dynamics, body, ethical and spiritual perspective, career trajectory, finances, friendships, and a host of concrete things like insurance and my sleep cycle. Thanks to a cultural shift that happened between my mother’s generation and mine, I did not feel alone in talking or writing about those changes.

Death, too, is a bigger story, and the death of someone close affects many of these same areas (identity, family dynamics, finances, sleep…). While death may also have some unique hurdles (birth doesn’t need a positivity movement), I believe we have a great deal to gain by being open to conversations about the end of life.

Death Café is one place to start. Participation is free and on a drop-in basis. You do not have to sign up. In addition to the Death Café website, Death Café Boise on Facebook gives local information including dates and locations of gatherings. The next Boise Café is schedule for March 16, 7 pm at Congregation Ahavath Beth Israel in Boise.

But if Death Café is not your cup of tea, or if there isn’t one in your area, or you want to get started sooner than March, it is not hard to replicate Death Café’s main purpose with a group of friends. The more I’ve waded into this topic, the more I have discovered that the awkwardness around death is often just lack of practice, and others, too, are hungry for conversation.

Next week, I’ll write about why I keep recommending two books: Atul Gawande’s Being Mortal, and Sallie Tisdale’s Advice for Future Corpses (and Those Who Love Them).

Thank you to all who read and subscribed last week! I was thrilled and grateful for the response. As I am new to this platform and the subscription process, I’d welcome any feedback on your experience. Please let me know if you have questions or suggestions laura@laurastavoe.com. And of course, feel free to join the conversation (click here if you do not see a comment box below).

Have a beautiful week.

Sign up here to receive my weekly blog: