Tag Archives: death

Buddhist life, death

How to Use Beginner’s Mind to Talk about End-of-Life

My end-of-life doula training emphasized from the beginning the importance of bringing curiosity and an open mind to conversations about end-of-life. Even when we think we know how someone feels or what they want, we need to allow room for them to surprise us.

Adopting beginner’s mind is a great way to do this. Engaging your beginner’s mind means letting go of preconceived notions and approaching something with curiosity and openness. When done intentionally, it can allow us to see something familiar in a new way, the way a beginner does.

A recent visit with Shawn, a friend in his 80s with some early dementia, gave me a great opportunity to practice beginner’s mind. I was pretty sure I knew what he wanted in terms of burial. He’s made offhand comments about hating the idea of being buried and preferring cremation. But I decided to be extra curious as we discussed his wishes.

I was surprised when he brought up water cremation and expressed how much he would like his body to be used as compost for a tree.

When I thought about it later, I realized I shouldn’t have been too surprised. He has always been drawn to the outdoors. When I helped him go through old photos, there were more of flowers and nature than of people. I’d ask him about the people in a photo and he’d say, “I don’t recognize them. But that’s a moonflower on a trellis I built of cedar around 1998.” One photo of his wife and then six close-ups of the peonies in a planter at her feet, capturing different angles.

Still, I was surprised that he even knew about water cremation, let alone that he was interested in it. I just learned about water cremation myself a few years ago; if I hadn’t been intentionally engaging my beginner’s mind, I might have let my own arrogance about being more up-to-date about burial practices and my assumptions about people older than me being traditionalists convince me he would want conventional cremation.

In fact, I was so sure that I already knew what he wanted, that I hadn’t even meant to talk with him about burial, but when our conversation went there, I let it. And I’m glad I did! Now I know what Shawn wants and I can help him and his family learn more about water cremation.

If you want to practice beginner’s mind, here are a few of the strategies I used in my conversation with Shawn:

  1. Listening without thinking about my response. This can be tough! I had to remind myself a few times while Shawn was talking to let the responses forming in my brain go. When I felt the urge to interrupt to challenge something he said or point out how it contradicted something else he’d said, I took a deep breath and imagined the words forming in my head leaving with my exhale.
  2. Allowing pauses in the conversation. Another tough one. I fall into the trap of judging the quality of a discussion by how little silence there is. But when I’m really listening to the other person, I need a few seconds after they stop talking to formulate my response, which means there will be silence. I sometimes say, “Give me a moment to organize my thoughts” to acknowledge that pause—to myself as much as to the other person.
  3. Asking questions that elicit more information. “Tell me more about that” is one of my favorites right now. Shawn loves to talk about himself, so when I say “tell me more,” he does! It’s not always on topic, but that’s ok. Whatever he says helps me learn more about him and that’s my real purpose.
  4. Letting go of efficiency. Beginner’s mind means taking the scenic route. It may take multiple conversations or some meandering to get to any meaningful answer to a question. It took me an hour to learn that Shawn was interested in water cremation. Beginner’s mind cannot be rushed.
grieving

Help Your Loved Ones Follow Your Wishes: make a will + advance directive and have the difficult conversations

From the moment my husband’s stroke started, I had to make decisions for him: call 9-1-1, consent to him being transported to another hospital from the original one the ambulance took him to, authorize surgery to remove part of his skull to allow his brain to swell without causing more damage to his brain, and on and on. When he didn’t wake up after his final surgery, a year after the stroke, I had to make the decision to remove him from life support. After that, decisions had to be made about cremation and a celebration of life.

As difficult as all of this was, it would have been significantly more awful if Tom and I had not talked at length before I had to make those decisions about what we each wanted in the event that we couldn’t make our own decisions. We had wills and advance directives drawn up years before we needed them. The advance directive allowed me to make medical decisions for him; the talks about what we wanted allowed me to know with confidence when to say yes to care and when to decline it; and the will allowed me to respect his final wishes in terms of who got what and what kind of memorial service he would have wanted.

You may know that you need to have a will and advance directive, but you may not know how to get started on them, or you may worry that hiring a lawyer to do them will be too expensive. You may not know who to designate to make decisions for you in an advance directive. You may not be sure who to have the conversation with about your final wishes.

That last question may be the toughest because not only do you need to decide who to talk to, you also need to think through what you want and who might be making decisions for you. That’s a lot. You may not want to think about those things, and I get that. It may help to frame it in terms of making things easier for others. When you are able to specify what you want and share that with loved ones, you’re making their lives easier because in the event that they need to make decisions for you, they won’t have to guess at what you would want, which can lead to guilt and regret.

To help you think through what you want, I highly recommend the Five Wishes guide to end of life care. Not only is the guide set up to walk you through the difficult questions, once you complete it, you will actually have a legal advance directive—no lawyer required. A hard copy version is $5 and a digital version is $15.

As far as who you designate to make decisions for you, most people select a significant other, a sibling, or an adult child. You’re not limited to those, however, so you could choose a friend, a spiritual advisor, or someone else. Talk to that person about what you want and answer any questions they have.

If you anticipate that friends or family may object to decisions the designated person makes, it’s ideal to talk to those folks and assure them that the designated person knows what you want. If that isn’t possible, the next best option might be to tell the designated person what kinds of objections to expect.

When it comes to writing up a will, if you have a simple estate, no minor children, and don’t anticipate people contesting your will, you don’t need a lawyer. Laws differ from state to state, but in Colorado (where I live), a will is considered legal and binding as long as two witnesses have signed it OR you’ve had it notarized. This website will walk you through the process.

The #1 most important thing is to have these conversations and make these documents BEFORE THERE IS A NEED FOR THEM.

death

What To Talk about with a Dying Person

Several years ago, one of my favorite colleagues was diagnosed with advanced lung cancer and her doctors anticipated she would die within a few months. The diagnosis was a shock. She was close to retirement and had been eagerly anticipating post-retirement life. She told me the news in her customary no frills way: “I’m a dead person.”

But she wasn’t dead yet and for the months she had left, I had no idea what to talk to her about. I saw her many times after I knew she was dying and every time, I carefully avoided the topic of her death. But it seemed pointless to pick up our usual conversation topics, which revolved around work, writing, and travel. None were relevant to her anymore.

I did my best to steer our conversations to our children or our shared history of living in Virginia—topics that felt “safe” to me. She wanted to talk about how her wife would fare as a widow, but I mistakenly thought I should just tell her not to worry about that and trust that her wife would be fine. In hindsight, I wish I had invited her to share her anxieties about her wife instead of shutting them down.

My husband wanted to talk about his death and how I would manage, too. He didn’t have a terminal diagnosis, but he felt that his death was imminent after the stroke and the seemingly endless complications he suffered. Three months after his stroke and nine months before he died, he begged me to talk to him about his death. I reluctantly agreed, certain that the conversation wasn’t necessary and would just be horribly depressing.

It was a very difficult conversation, but we both felt immensely better afterward. We were both able to feel peace, knowing that nothing was left unsaid between us. That conversation allowed me to remove him from life support when the time came with a clear conscience.

My friend and my husband are not unusual in their desire to talk about their deaths and the aftermath. I am learning now in a class I’m taking to become certified as an end-of-life doula that dying people often want to talk about their death and how their loved ones will do afterwards.

I wish I had told my friend how much I would miss her. I told her I loved her, but I wish I had told her how much I would miss our conversations and her dry humor. I wish instead of brushing off her concerns about her wife I had invited her to share her worries. I thought my job was to resolve those worries or minimize them, but it’s clear to me now that I was wrong.

My therapist would remind me that I did the best I could at the time. I did not yet know how to hold space. I did not understand that when you are talking to a person who knows they are dying, they get to pick the topics. This is only fair since their time is limited. Whatever they want to talk about should be talked about.

Now I know.

Now I think “what’s on your mind?” might be the best question to open with. From there, allow silence, allow your own discomfort, and put aside your ideas about what “should” be talked about. It’s not really about you. If a topic comes up that you don’t know how to talk about, it’s ok to say, “I don’t know how to talk about this.” Let them talk about it. Maybe all you need to do is listen.

grieving

Do the Dead Forgive Us?

One commonality among all the grieving people I know is regret. For many of us, the regret is small(ish) but others are plagued by regret. People wish they could take back something they said or did or do or say something that was left undone or unsaid. Often the regret is about something that seemed innocuous in the moment but in the aftermath of the death, takes on outsized significance.

I’ve mentioned before my own regret about how I responded to my late husband’s pain. My insight about how to respond better came too late. I would give anything to be able to apologize to him for not getting it right at the time. I spoke with two widowed friends in the past week who are experiencing similar regrets. The impossibility of ever apologizing or explaining themselves weighed on them heavily. They both wondered, could their dead partner ever forgive them?

I choose to believe that our dead loved ones hold no grudges, that they miss us as feverishly as we miss them, and that just as we wish we could do-over some of our interactions, they have the same wish.

We couldn’t have known then what we know now. Had we known the day or moment they would die, we might have behaved differently, but we didn’t know. Had they known the day or moment they would die, they might have behaved differently, but they didn’t know.  We did the best we could in the moment, and I think our dead loved ones recognize that more readily than we do.

I choose to believe that the dead are more enlightened than we are and that they do not hold us responsible for not having had the knowledge we have now when they were alive.

Sometimes when I am wishing I had done or said something to Tom differently, I try to see myself in that moment through his eyes. He believed me to be smart, strong, compassionate, and capable. He appreciated my caregiving and loved me as much as I loved him. He might wish I had been more patient sometimes or done things differently, but he knew I was thrown into being a caregiver the same way he was thrown into being a care recipient. Neither of us had been prepared for those roles and we gave each other a lot of grace. I try to give myself the same grace Tom gave me.

I also try to keep in mind that my memories aren’t always reliable. My recollection of how I behaved or what I did or didn’t do isn’t nearly as accurate as I think it was. I trust that my dead husband will give me the benefit of the doubt because he loved me and that’s what people who love each other do.

These are choices I make about what to believe. I was raised in a tradition built on guilt and felt tremendous guilt after my mother died. I believed I could have saved her (I found her after school, still alive but unresponsive—and as an example of the unreliability of memory, my sister believes that she’s the one who found our mother, so one of us must be wrong) and that she died because I waited too long to call anyone. I regretted every argument we’d had, and there had been many. I wished I hadn’t physically pushed her way the last time she tried to hug me. I especially was sorry I had told her I was embarrassed by her.

For years, I cried myself to sleep most nights under the weight of this guilt. It was proof that I was a bad person. But gradually, I began to see myself as a not-so-bad person and that version of me was able to see my mother as a troubled but generous person who would certainly forgive me for the things I did as a tween that were actually totally appropriate for a tween. My mother had been a fourth through sixth grade teacher who knew tween behavior. Of course she would forgive me.

I still wish I hadn’t behaved the way I did toward her, but I also understand the behavior of tween me as normal and forgivable. Regret over the behavior is not worth carrying around with me as a weight to hold me down.

I can’t tell other grieving people what to believe, but I hope that whatever you believe, it is something that does not hold you down.

caregiving, grieving

How to Be with a Dying Person

Because we don’t tend to talk about death and dying in our culture, most people are afraid to be with a dying person, unsure of what to do or what to talk about.

I was with my husband when he died. During the two days between him not waking up after surgery and discontinuing life support, I was with him for 12 hours a day. COVID restrictions at the time limited guests to two at a time and no one was allowed to spend the night. Sitting with a dying person for 12 hours may sound grueling, but I found that I became so absorbed in the present that the time flowed.

More recently, a loved one made the decision to begin receiving hospice care, which means they are no longer receiving medical intervention for infections and conditions and only taking medicine for pain. Typically when a person begins receiving hospice care, it means they are ready to die, but it may take months or longer for that to happen. In the case of my loved one, they are progressing quickly toward death.

I have spent the last few evenings with my loved one and their partner.

My thoughts on how to be with a dying person are shaped by these two experiences and also my own near-death experience after I had a stroke in 1997.

Here’s my advice:

If they are able to talk, they may be hard to understand. Be patient. There is no urgency. Give them time to stumble over their words. Follow their lead about what to talk about. They may want to talk about dying or the weather or their mother or something else. Whatever they want to talk about is ok. You don’t have to try to steer them toward or away from certain topics.

If they are responsive but not able to talk, you can hold their hand. You can talk to them about memories, you can read to them, or you can be quiet. Sometimes sitting in silence with someone is more comforting and profound than filling the space with words.

It’s ok to bring a book or play a game on your phone. You might scroll through pictures on your phone and show them to your loved one, if their eyes are open, or describe the photos to them if their eyes are closed. When my husband was dying, I chanted his favorite Buddhist chant.

If they are not responsive, talk to them. The point isn’t to wake them up but to help them understand what is happening around them. I don’t know what a person who is dying and appears to be sleeping understands, but I choose to believe that they can hear us talking and feel us holding their hand or touching them gently.

When I enter the room of a dying person, I announce my arrival to the person and give a description of what I’m doing. I might say, “Hi, Loved One. It’s Liz. I’m here to say hello and tell you I love you. I’m going to sit down on your right and hold your hand.” I also announce when I’m leaving.

When I visited my loved one today, I noticed several vases of beautiful flowers in the room that others had brought. I described them in detail to my loved one so they could picture them if they wanted to. I told my loved one how good it was to see them looking peaceful.

When I was in a drug-induced coma after my stroke, I did hear people’s voices. I don’t know if I captured everything that was said around me, but I was certainly aware of who was in the room with me and the broad strokes of the conversation.

It’s ok to cry. It’s ok to not cry.

You don’t need to entertain them, but it’s ok to laugh. Death may feel like serious business, but I think my husband enjoyed hearing his loved ones laughing around him as he died.

If the person is at home, it can be nice to bring some food for their family, if they live with others. At my loved one’s home, people have brought cheese and crackers, brownies, fruit, salad, and other easy-to-eat food, along with many bottles of wine.

Take care of yourself: take breaks, stay hydrated. I have had to set alarms to remind myself to go for a walk, have a drink, and eat a snack every few hours.  

It can be exhausting emotionally, which may leave you feeling tired, irritable, or disoriented. You may feel calm when with the person and then weepy and anxious later. Or vice versa. I find that I feel completely calm and open while with a dying person and then I’m very anxious and sad after. The anxious sadness can last for days.

It can help to remind yourself that being with a dying person is an honor that not many people get to experience.