Category Archives: death

Aging, death

Write Your Damn Will Today

When my husband died, the last thing I wanted to think about was his will. Grieving is a full-time job. Because Tom had prepared his will years earlier, I was spared one of the most brutal complications that can follow the death of a loved one. I’ve heard other widows describe the nightmare of sorting through estate issues without clear guidance—families fighting, assets frozen, legal battles that drag on for years and compound their already devastating loss.

Writing a will is an act of love. It’s a final gift of clarity and protection for those you’ll leave behind.

I know what you’re thinking: “I’m too young” or “I don’t own enough to need a will” or “It’s probably complicated and expensive.” But the fact is, if you own anything of financial or sentimental value, even if it’s just a crappy car, a small savings account, or a family heirloom necklace, writing down your wishes about who gets what will help those you leave behind. And no matter how young you are, I bet you can think of someone your age who died suddenly (and maybe without a will). Finally, it’s not as hard or expensive as you think—keep reading and I’ll tell you about a free and easy way to create a will.

Most importantly, get it through your head that having a will isn’t about you—it’s about the people you love.

If you die without a will, your loved ones will have to deal with additional stress during an already difficult time. If there’s no will, they may have to work through extra legal hurdles, family conflicts, or second-guessing whether they are doing what you would want. You may think no one would want your stuff, but I know families that have fought over cars that don’t run and neckties that nobody liked—not to mention a herd of cattle that a bunch of city slickers went to court over.

The best news is that for most of us, writing a will is relatively simple and affordable. While complex estates might need legal guidance, a basic will is perfectly adequate for most people. Having a simple will is infinitely better than having no will at all.

Recently, I helped someone write their will using FreeWill, an organization recommended by the AARP. I was amazed at how simple it was. The whole process took less than 30 minutes, and yes, it was completely free. The website walked my friend and me through every step, explaining legal terms in plain language and helping them think through important decisions.

The site generates a legal document that you just need to print and get signed by two witnesses who aren’t beneficiaries in your will. In most states, you don’t even need a notary (and the site will tell you if you live in a state that does need a notary).

So, you have no good reason to put it off.

Today, right now, take 30 minutes to write your will. Do it while watching TV or during your lunch break. Do it because you love your people. Do it because it’s free and easy. Do it because having witnessed the chaos of no will and the clarity of having one, I can tell you that this small act makes a world of difference.

Don’t wait until it feels urgent.

Once the will is written, talk to your loved ones about it. Even better, talk to your loved ones before or while you write your will. Make it a family activity. You may be surprised to find out who would love to have your vintage tea cups or the old trombone in the basement.

When we avoid difficult conversations about death, we often create more pain later.

Elizabeth Kleinfeld is a disabled widow who blogs about grief, disability, Buddhist life, and joy. Sign up for her free monthly newsletter here. 

Aging, death

Don’t Inflict Your Toxic Positivity on a Dying Person

One hospice patient I visit lives with her daughter, Sarah. A visit with this patient is a visit with Sarah, as she almost never leaves her mother’s side.

Every time I visit, I see her mother’s decline: her shoulders a little sharper beneath her pajamas (the only clothes she wears now), her cheekbones more prominent, her energy more depleted. But every week, Sarah insists cheerfully that her mother is just having a rough day and will be better tomorrow.

On my most recent visit, Sarah hovered anxiously over her mother, who sat at the dining room table nursing a cup of coffee. Sarah arranged organic fruit on a plate and put it in front of her mother, explaining to me how careful she is to make sure all the food her mother eats is natural and organic even though she has trouble affording the more expensive groceries. The health benefits are worth it, she said.

While Sarah chattered about future plans, her mother’s eyes met mine across the table. She was tired. The contrast between Sarah desperately clinging to optimistic fantasies of recovery, meticulously monitoring every morsel of food, while her mother quietly surrendered to the inevitable was stark. When Sarah left the room for a moment, I asked her mother what she wanted. “I want to make Sarah happy,” she said softly, and then, “But I don’t think I can.”

I wanted to scream at Sarah, “Your mother is dying! All the organic food in the world won’t change what’s happening! She needs your support and love right now, not a special diet. Stop focusing on the food and start focusing on being present with her while you can.”

But I also understand where Sarah is coming from. I inflicted my own toxic positivity on my husband after his stroke and it took conscious effort to change my behavior. Once I started making that effort, I could see that it was what we both needed. Our conversations became more authentic and vulnerable when I accepted that sometimes things just sucked. I think it was a relief to him when I acknowledged that and let him grieve what he lost with the stroke.

When you visit with someone who is dying, it’s natural to want to find something positive to say. Maybe you’ll be tempted to talk about new treatments on the horizon, or remind them how many people beat the odds, or suggest they just need to stay positive. Please don’t.

Dying people don’t need our forced optimism. They need our presence, our willingness to sit with hard truths, and our acceptance of their reality.

Toxic positivity—the pressure to maintain a positive outlook at all times—can be especially harmful to someone facing death. When we respond to their dying process with “Stay positive!” or “Don’t give up hope!” we’re essentially telling them their feelings about dying are wrong. We’re asking them to perform optimism for our comfort.

Sarah tells me her mother loves my visits and I think I know why. When I show up, her mother can talk about her fears and sadness without being interrupted with a reminder to smile and be grateful. With me, she can discuss practical end-of-life planning without being admonished to “keep fighting.”

It’s ironic that Sarah wants to be closer to her mother in these last days or weeks or months, but by trying to force positivity into every conversation, she’s shutting down authentic communication. When we make space for someone to express their full range of emotions about dying—including fear, anger, and sadness—we often create moments of genuine joy and connection.

Being with someone who’s dying requires us to examine our own relationship with death and our own emotional limitations. If you find yourself constantly redirecting conversations toward the positive, ask yourself: Who is this serving? Am I trying to make them feel better, or am I trying to make myself more comfortable?

I’ve found these phrases to be particularly helpful for conversation that doesn’t hinge on the assumption of positivity:

  • “I’m here to listen, whatever you want to talk about.”
  • “What do you need right now?”
  • “It’s okay to feel however you’re feeling about this.”
  • “Tell me more about what you’re experiencing.”

Dying is a normal part of life. When someone shares their dying process with you, they’re inviting you into one of life’s most profound experiences. They don’t need you to fix it or brighten it or reframe it. They need you to witness it, to acknowledge it, and to accept it alongside them.

Elizabeth Kleinfeld is a disabled widow who blogs about grief, disability, Buddhist life, and joy. Sign up for her free monthly newsletter here. 

Aging, caregiving, death, failure

Honoring Dignity until the End

I learned after my husband had his stroke how important it is as a caregiver to respect the dignity of the person you are caring for. My husband was still the amazing person I fell in love with—strong-willed, take charge, and unwilling to suffer fools. The challenges he faced after his stroke were often at odds with the traits I admired about him and that led to struggle for both of us. I had to learn ways to honor the man who was used to being in charge while we both adjusted to him not being able to be in charge the way he used to be.

I messed up all the time. One thing I never did stop doing that drove him nuts was using the word “remember.” His memory took a serious hit with the stroke and he hated that he couldn’t remember many things. Even though I knew that, I defaulted often to saying things like, “Remember, your OT said to always start putting your shirt on with the weak arm first.” I could have said the sentence without “remember” at the beginning and it wouldn’t have bothered him, but I forgot that more often than not and it irked him. Sometimes he would snap, “No, I don’t remember! I had a stroke!” out of frustration.

These moments taught me something profound about dignity: it’s not about being perfect in our care, but about acknowledging the humanity in our imperfection. My husband’s frustration wasn’t just about my use of the word “remember”—it was about his right to feel frustrated, to express it, to still be the person who could tell me when I was driving him crazy. That was dignity, too.

We were both learning how to navigate our situation, all the way up until the moment he died. Sometimes we both managed it well, but sometimes one of us managed it better than the other and had to show grace for both of us. Sometimes that was me and sometimes it was him.

My point is that my husband’s dignity remained intact until he died. Dying people are living people.

Now in my hospice work, I see similar dynamics play out. Well-meaning family members or healthcare workers slip into patterns that diminish the dying person’s dignity, often without realizing it. They’ll discuss test results over the person’s bed as if they’re not there, or use that sing-song voice normally reserved for small children and pets. I recognize it because I’ve been there, uncertain about how to act around someone whose capabilities have changed.

But what I learned from my husband serves me well now. When I interact with a hospice patient, I carry with me the understanding that this person, no matter how unresponsive they might appear, is still living their life. They’re still accumulating experiences, still processing emotions, still being themselves. Just as my husband was still himself, even when the stroke changed how he could express it.

I’ve developed what I think of as a dignity practice. I announce myself when I enter and leave a room, speaking directly to the person: “Hi Sandra, it’s Elizabeth, the hospice volunteer.” I ask permission before touching anyone or their belongings. I maintain privacy during personal care, narrating what I’m doing like I would want someone to do for me. These aren’t just polite gestures—they are acknowledgments of personhood.

Sometimes family members look at me strangely when I talk to someone who hasn’t responded in hours or days. One patient’s daughter told me, “I don’t think she can hear you,” and I said, “Sharon, I think maybe you can hear me,” and continued talking to her. Even on his hardest days, my husband was still there, still himself, still deserving of being treated like the capable, complicated person he’d always been.

Dying doesn’t erase personhood—dying distills it to its essence. Just as my husband’s stroke didn’t make him any less the man I married, terminal illness doesn’t make someone less themselves. Our job is to honor who they are until the very end.

death, grieving

My Choice to Respect My Dead Husband’s Privacy

After his stroke, Tom spent hours at a small black desk facing our porch, a compromise when his wheelchair made actually getting outside too difficult. The desk became his command center, gradually accumulating the tools and supplies for his unlikely new hobby: knife sharpening. Who else would take up knife sharpening after a stroke? That was pure Tom, finding a quirky way to adapt to his new circumstances while still expressing his need for a little danger.

His approach to organization hadn’t changed with the stroke. The knife sharpening supplies sprawled across the desk, spilling onto nearby surfaces. Tom had never been known for neatness. One of my favorite stories about his disorganization involves him having a pile of papers on the dashboard of his van that was so tall he could barely see over it. He finally got motivated to dump the pile of papers only to realize later that—oops—the pile had included a money order.

The stroke had left him with Left Neglect, unable to process any sensory input from left of his midline. We found workarounds for reading and writing, but computer use proved especially challenging. Eventually, his laptop migrated to the left side of the desk—the forgotten side—and disappeared under layers of papers, books, and sharpening supplies.

After he died, I moved the knife sharpening equipment to the garage, where it still makes me smile, remembering his dedication to this improbable hobby. I kept his journals and books and look through from time to time. His left neglect shows up in the pages where he started writing in the middle and continued to the right margin. He annotated some of the books he was reading, but the notes are clustered only on the right-hand pages.  

The laptop stayed hidden in a drawer until last week, when I suddenly noticed the desk had drawers at all. Four years untouched. What might it hold? Pre-stroke emails, photos, browser histories—windows into who my husband was before his stroke. I plugged the laptop in and heard it whir to life but then I sat with my hands hovering over the keyboard for some time, trying to decide if I really wanted to know what was on the laptop.

I guessed incorrectly at the password and stopped.

I could keep guessing at the password. But I’ve handled all the practical matters of his life and death—the financial and legal matters have been settled. I have all the records and paperwork I need. What remains on that laptop belongs to him, to the private space of his thoughts and interests that existed separately from our shared life.

Tom was a man who valued his privacy. Before his stroke, we gave each other ample space for hobbies and friendships that belonged to only one of us. We were never a couple who did everything together and we valued our independence as much as we did our relationship as a couple.

Tom lost his independence completely with the stroke. He took that loss with incredible grace, but I watched how hard it was for him to need help with everything from getting dressed to using the bathroom. Now, 3 ½ years after his death, I can honor his privacy by leaving his laptop unopened. While part of me is curious about what I might find there, a deeper part knows that respecting the boundaries he valued in life is a way of honoring his dignity even after death. The laptop will stay in the drawer, holding whatever secrets it contains.

Aging, death, normalizing what should be normal

“I Am Not a Poor Thing!” How to Talk to a Dying Person

Last weekend when I visited Margaret, my hospice patient who’s in her late 80s and dying of COPD, she was having a challenging day—she was confused about whether it was day or night, how to use a fork, whether coffee is a drink or a food. I told her a bit about what I had been up to, and then she said she was tired and wanted to nap, so I helped her get settled into her lounge chair. As she was drifting off, a visiting relative who probably meant well said to me, “Poor thing.”

Margaret snapped out of dozing, straightening herself up in her chair. “Did she say ‘poor thing’?!” Her voice was strong and clear, her jaw set. All the sleepiness that had been creeping in for the past 20 minutes evaporated.  

“She did,” I confirmed.

“I am not a poor thing!” Margaret proclaimed.

Her relative looked surprised. “I didn’t mean anything,” she stammered.

“Well, I am not a poor thing!” Margaret said again.

The relative slunk into the kitchen to busy herself and Margaret and I sat in silence for a moment. “You didn’t like that, did you?” I said, and put my hand over Margaret’s. “Poor thing,” she muttered again angrily, before settling into her chair to nap.

I think the “poor thing” comment bothered Margaret because it tried to reduce her to something pitiful, something less than the complex, three-dimensional person she still is. It attempted to put her in a box labeled “dying person,” as if that were the only relevant fact about her. Even worse, the comment was made about Margaret to me but in front of Margaret.

Dying doesn’t strip us of our dignity, our personality, or our right to be treated as full human beings. When people respond to the dying with pity—saying things like “poor thing,” “what a shame,” “how awful,” and the like—they’re not seeing the whole person. They’re seeing only the illness, only the ending.

But Margaret is still Margaret. Yes, she’s dying. Yes, some days are harder than others. But she’s also the same woman who raised two children by herself, who read voraciously until her vision made it impossible, who loves animals and lights up when her grandson talks about his dog. She’s not a tragedy. She’s a person living the final chapter of her life with grace and authenticity.

So two practical lessons here if you’re spending time with someone who is dying:

  1. Talk to them not about them. Whether you think they can hear you or not, show respect for them by talking to them. I think Margaret was a little extra pissed about the “poor thing” comment because it was directed to me about her.
  2. See them for who they are: a person with a rich life behind them who is entering the final chapter. We all die—it’s normal. It may be sad, but it is not a tragedy.
death

What Dying People Teach Me about Slowing Down

Time moves slowly for Margaret as she waits to die. She’s been expecting death to come for months, having outlived her medical team’s predictions by 8 months now. Her adult children try to get her to move faster as she goes about her day. If she hasn’t touched her snack in a few minutes, one of them will say, “Mom, take a bite of fruit.” A few minutes later, one will ask her if she’s finished with her snack. Her answer is almost always the same:

“I don’t think so,” said slowly and deliberately. She will not let other people’s rushing determine her pace, which is languid and relaxed.

When I help her sit in her push button recliner, she often calls out halfway through its recline, “Oh, wait, stop.” The reclining action is too fast. She wants it to slow down, but the chair has just one reclining speed, so she takes a break midway through the recline and then lets me know when she’s ready to continue reclining.

I’ve seen this resistance to hurrying in other people near end-of-life. I adore the paradox: those with the least time often understand best how to use it. Margaret, Shawn, and others are deeply present in the moment. They speak with measured words and seem to feel no urgency. Every simple act becomes a meditation – there is no rush when every moment holds its own completeness. A sip of water is something to savor. When I hold Margaret’s hand, she smiles contentedly and squeezes my hand, taking time to really connect before letting go.

This radical slowing down stands in sharp contrast to the pressure in the larger culture to be “productive,” to multitask, to do things quickly, efficiently, and do more and more of them. The urgency I feel to respond to texts or check the news headlines evaporates when I am with someone who measures time by something other than tasks completed.

After my husband’s stroke, it could take an hour to get him dressed. Rushing only slowed things down—an arm would end up in the wrong sleeve, a nearby lamp would get knocked over, or worst, we would argue—so I learned to let getting dressed unfold at its own pace. Instead of thinking, “I need to get out his clothes, make sure he’s ok with them, get his pajamas off, get his shirt on, get his pants on . . .” I focused on the first thing that needed to be done and tried not to think about the second thing until the first thing was completed.  

Getting his clothes out might take one minute or it might take 20, depending on his mood, the weather, how caught up I was on laundry (it seemed he always wanted to wear the clothes that were in the dryer at the moment rather than the ones that I had already folded and put away). On the days when I was distracted while we picked out his clothes by all the other things that needed to be done, I didn’t listen as well when he mentioned that he wanted to be bundled up in flannel, and then I’d be impatient when he resisted putting on the non-flannel shirt.

In the moments when I rushed Tom, I felt justified. It was usually because we had an appointment with a doctor or physical therapist and being late would mean forfeiting the slot. But rushing him meant forfeiting the warmth of being on the same team. I understand why I rushed him and at the same time, I wish I hadn’t.

We can only ever exist and act in the present moment. Our minds can speed ahead into the future, but we cannot. Being present means keeping your mind anchored in the here and now. When I let picking out Tom’s outfit take as long as it needed to take before moving onto the next step of getting him dressed, I was calm and present. When I let reclining Margaret’s chair take as long as it needs to take, I am calm and present.

I need to learn over and over that time doesn’t need to be managed or conquered. It needs to be inhabited, fully and without hurry, one moment at a time.

caregiving, death

Love, Food, and Loss at the End of Life

Margaret is dying. She’s almost 90 and has chronic obstructive pulmonary disease (COPD), a condition of the lungs that limits airflow and causes shortness of breath. She’s been on hospice care at home for many months and is ready to die.

Usually when I visit her, she has very little appetite. Her children want her to eat and offer her meals, snacks, and beverages every few minutes while I am there. “Mom, how about some toast?” one asks. Margaret shakes her head slowly. “I’m not hungry,” she says softly.

“Just a bite of toast, Mom? Please?” the daughter urges, putting a plate of toast in front of her.

Margaret takes a bite of toast, looking down at the plate. She gestures slightly with the toast and asks me, “Is this the toast?”  She no longer remembers the names of many things.

“Yes,” I confirm. I deliberately do not encourage her to eat more of the toast.

Later I mention to the children that appetite loss is normal for people approaching death. I’ve told them this before, but I know that watching your mother die is difficult and I don’t know what they remember of our previous conversations. I tell them again as if it’s the first time.

I know firsthand how hard it is to watch a person you love refuse food, especially when shared meals have been important to family life for years. Margaret’s kitchen is stocked with beautiful blue Le Creuset cookware, indicating that food preparation has been taken seriously.

One of the ways I demonstrated my love for my husband Tom was by cooking for him. When we met, I was learning how to cook meat after being a vegetarian for 25 years. As a hard-core carnivore, he was happy to give me assignments: learn ten ways to make chicken, talk to the guy who owns the local meat shop about the best cut of beef for slow cooking, and of course, come up with 7 different recipes involving bacon to celebrate Bacon Week (which doesn’t technically exist, but did in his house, and ran from Christmas to New Year’s).

After his stroke, I knew his recovery was going well when he started asking for very specific foods and dishes: tangerines with crème fraiche, a combination of red and green grapes, chicken pot pie with fresh thyme. He had a sweet tooth after the stroke and loved root beer floats and chocolate eclairs—so I kept root beer and ice cream on hand. I discovered the Whole Foods bakery made chocolate eclairs on Tuesdays and Fridays and I got them delivered. He took joy in eating, thanking me for whatever I gave him and often bragging to his medical team about how well I fed him.

About a month before he died, his appetite began to wane. He no longer got excited about his morning coffee and sometimes wanted to go to bed without dinner. I made his favorite dishes—macaroni and cheese, fried chicken, chilaquiles. I made a side of bacon to go with whatever I cooked. Sometimes he didn’t care. He took a few bites of a chocolate éclair and lost interest. Even juicy fresh fruit lacked appeal for him.

I was crushed. For twelve years, he had loved my cooking and I had loved cooking for him. Cooking for him was one of the ways I made him feel special—not just serving his favorite foods, but setting the table nicely, using cloth napkins every night, sometimes lighting candles. I showed my love for him in a hundred little ways, but cooking for him was one of my favorites.

I now realize that there were signs he was dying well before he died. Like Margaret, he lost his appetite and all interest in food. He wanted to nap even more than usual. At the time, I thought he was just anxious about his upcoming surgery, but now I think he was turning away from this life and preparing for his next adventure.

Just like Margaret’s children, I kept offering food. I thought if I just came up with the right food to offer, he would eat. When he turned down a root beer float, I offered cherry pie. When he showed no interest in fried chicken, I suggested nachos. But none of it interested him.

I wish I had respected his wish to not eat and asked him instead, “What do you want?” If I had let go of my focus on food, he might have asked me to hold his hand or shared a memory with me.  

This is the question I bring to Margaret: “What do you want?”

She doesn’t want much—mostly to nap. But sometimes she wants to talk about what death will be like or whether she’ll be reunited with her dead siblings. Often she wants to sit together in silence.

At the end of life, those activities may hold more meaning than eating.

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.
death

How talking about death can help us live better

The experience of being with my husband while he died was incredibly moving. It was heartbreaking and almost unbearable . . . and at the same time, it felt magical. I know magical may be a much more fanciful word than you were expecting in reference to death. I’m surprised to be using it, actually, and yet it feels accurate.

Being with Tom as he left this life felt momentous. I choose to believe that Tom still exists somewhere in some form and seeing myself as someone shepherding him into that next adventure felt like an honor. It was one of the most moving and special experiences of my life, and it filled me with a deep reverence for life itself. When I add up all these feelings in one word, I am left with magical.

For years, I’ve been captivated by the Ram Dass quote, “We’re all just walking each other home.” Being with my husband when he died felt like walking him home, being with him as he went to a place I couldn’t follow him to. Parting ways was heart wrenching, but the walk was a deep honor. Since then, I’ve felt such gentleness toward my fellow humans, recognizing that I am walking alongside them on their walk home, even if it’s just for a few moments. That realization makes every interaction feel special—and it is, I just didn’t always recognize that.

As someone who spent most of their life deeply fearing death, I was amazed to have such a powerfully positive experience with a loved one’s death. It was also tremendously devastating, leading to horrible anxiety and an intense grieving process that I expect will last until I die. The powerfully positive doesn’t cancel out the tremendously devastating. They exist simultaneously.

A few months after my husband’s death, I attended a grief support group in which one of the other participants mentioned being a death doula. I knew the term doula in reference to birth, but I had never heard of a death doula, so after the meeting, I googled it. I was intrigued.

Death doulas, also called end-of-life doulas, function much like birth doulas. Just as a birth doula shepherds a human into life, a death doula shepherds them out. Death doulas also support family members and loved ones in their grief. Death doulas can serve different functions for different clients, but it all boils down to being a supportive companion for a dying person and/or their loved ones. I immediately knew I was interested in being a death doula.

Last month, I started an 8-week course that will end with me being a certified death doula. What I most appreciate about the training is the constant reminder that people who are dying are still alive. Until a person is dead, they are alive and should be treated with all the respect we give the living. A lot of being a death doula is facilitating people living to their fullest for as long as they can.

Another important aspect of the work and one way we demonstrate respect for dying people is by being honest with them about their impending death. Instead of pussy-footing around the subject or sugar-coating it, death doulas talk openly with clients about pain, the process of dying, and death’s aftermath. If a client wants to know what death feels like, we tell them what we know rather than changing the subject. We support dying clients in having difficult conversations with their loved ones about what will happen after they die.

This is the kind of honest, straightforward talk I craved after my husband died.

I am also quite interested in working with people who do not have a terminal illness or any reason to believe their death is imminent but, like me, they want to get right with death, which in a lot of ways actually means getting right with the life you’ve lived and will live.

For me, recognizing the certainty that I will die and leave behind so many people that I love so crazy much inspires me to savor the deliciousness of every moment I have with them. It makes me see an afternoon nap not as a waste of time but as a delicious luxury, a few minutes of doing something just for the pleasure of it. It makes me a better listener. It reminds me that when I die, no one will remember me for how much I got done but for how I made them feel.

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.