Tag Archives: dying

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, 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.

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.

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.

Buddhist life, grieving

Showing Up for Death

Watching someone die is hard. Sometimes we know we are watching someone die—perhaps they are in hospice or a medical professional has estimated how much time they have left. Other times, we may notice a slowing down and have a creeping realization that this person is moving toward death.

I watched my husband die for 53 weeks after his stroke. He faded very slowly, in fits and starts, so that it was possible for me to convince myself that he wasn’t actually dying at all. He maintained his vigor and bravado right up until the end, even when he had stopped eating. His death was a shock to me, although I knew that from the moment of his stroke, I was “walking him home,” an expression spiritual teacher Ram Dass used to express the shared experience of embracing the inevitability of death.

As painful as it is to watch, I think being with someone in their final months, weeks, days, or moments is an honor and even a responsibility. As much as we may want to turn away, I think we need to bear witness to death. Death is a totally natural part of life. Witnessing it normalizes it. Showing up for a person who is dying is one way to show respect for life itself. A person who is dying isn’t dead yet and many of their needs are like those of the rest of us: they need to be seen, heard, and acknowledged; they need to feel loved and valued; they need to feel remembered; they need to not feel abandoned.

I think one reason people avoid showing up for death is that they don’t know what to do. People who are dying are often less able to participate in conversations. We may wonder what to talk about with a dying person or how to engage them. We may feel pressure to keep a conversation going but feel nervous about which topics are “safe.” Here’s what I learned in my husband’s last year: it is easy to meet the needs of people who are dying if we focus on those needs rather than our fears.

Every one of those needs can be met by simply showing up. What is the most basic way of letting someone know they are seen and heard? Being there in person or on the phone with them. What is the most basic way of showing love? Making the effort to be there in person or on the phone. How can you let someone know you remember them? Be there. How do you let someone know they haven’t been abandoned? Sit with them.

Simply sitting in silence with someone who is dying is completely ok. I spent hours and hours in silence with my dying husband, simply holding his hand. When he had lost consciousness and was being kept alive by a ventilator, I told him over and over, “I’m right here.” In other words, I was not a brilliant conversationalist. Cake’s post on watching a loved one die emphasizes that it’s your presence that matters, not the conversation, and that silence is completely ok.

If you’re interested in learning more about dying and showing up for dying, I highly recommend Sallie Tisdale’s book, Advice for Future Corpses (and Those Who Love Them). Tisdale is a Buddhist and brings Buddhism’s characteristic lack of sentimentality about death to the subject. (In my introduction to Zen Buddhism in 1997, the teacher led with, “Let’s face it: we’re all on a one-way trip to the boneyard.”) She offers concrete suggestions for what to say and not say. She recommends being kind to yourself, cutting yourself slack when you don’t show up exactly as you wish you had.

Perhaps the advice of Tisdale’s that was the hardest for me was to let the dying person talk about death and dying. My husband wanted to talk about it, but I was afraid that if I acknowledged he was dying, he would slip away faster. If I could change one thing about how I showed up for his death, it would be to not change the subject or dismiss his worries when he wanted to talk about dying. All I had to do was listen.

And now, as Tisdale advises, I need to cut myself a little slack.