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Health

Hospice nurse who's seen a hundred people die shares the one regret her patients always have

Gratitude is everything.

via Gustavo Fring/Pexels

A kind nurse offers a flower.

As the old saying goes, “You don’t know what you’ve got ‘til it’s gone.” Sadly, this hard truth becomes increasingly evident as we reach our final days. The things we take for granted today, such as our health, relationships, and time itself, become much more precious when we know they are about to end.

How much happier would we be every day if we lived with the perspective of those who are experiencing their final days?

Julie McFadden, known to her hundreds of thousands of followers on social media, as Hospice Nurse Julie, helps people appreciate their lives by regularly sharing her experiences with those who are living their final days.

Recently, she stopped by Rob Moore’s “The Disruptors” podcast, where she shared some of the big lessons she’s learned from the dying. Moore is a public speaker, entrepreneur and bestselling author of “Life Leverage.”

Given his background as an entrepreneur, Moore assumed that when people reach their final days, they regret the amount of time they spend working. "People definitely say that. 'I wish I didn't work my life away. I wish I didn't wait until retirement to do the things I wanted to do,'" McFadden said. However, there is another big regret that many share. “The main thing people say, that I don't hear a lot of people mention, is ‘I wish I would have appreciated my health,’” she added.

“I think the biggest thing I hear from people [who are] dying is that they wish they would have appreciated how well they how well they felt before,” she continued.

It seems that when people’s health begins to decline, they miss the vitality they never fully appreciated.

"I think most people take for granted things that have always been,” she told Moore. “You know, it's really easy to forget. We're so lucky to be alive in this moment. We're taking a breath right now. We're here on a rock that's like soaring through space. I mean, that alone can blow your mind."

McFadden believes that her profession reminds her to be grateful because dying is just as natural as living.

“I think because of my job, it's easier for me to see how once-in-a-lifetime this is. The fact that everything works together in our bodies to make us live and grow and I see that in-depth, too. I see how our bodies are biologically built to die,” she said. “That, right there, is so fascinating. We literally have built-in mechanisms to help us die. Our body can naturally do it. That's wild."

To get the most out of the miracle of life, McFadden writes a gratitude list every night so she’s sure to appreciate everything she has. Because, in the blink of an eye, it can be gone. “I like the fact that I can breathe, I'm walking around, I can feel the sunshine – little things like that,” she shared.

Our lives are filled with incredible gifts, whether it’s the people we love, the amazing things our bodies can do, or the places we get to see. But without gratitude, these beautiful gifts can easily go unnoticed and unappreciated. Practicing gratitude allows us to cherish these moments, so we’re fulfilled by what we have, instead of disillusioned by what we don’t.

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Heroes

Meet the hospice nurse whose viral TikTok videos make death a little less scary

TikTok

Hospice nurse Julie on TikTok.

Watching a loved one die is difficult, confusing, terrifying and heartbreaking. They transform before our eyes, unrecognizably. In turn, our faces are no longer familiar to them. The entire experience can leave us feeling powerless to help.

Hospice workers provide an incredible service to humanity by making this process less painful. And they do it with great kindness and compassion.

Julie is a hospice nurse in California. In her five years doing this, she has helped a lot of patients maintain a quality life in their final weeks and months before having a peaceful death. She's also educated a lot of families about what to expect during the transition, in an attempt to make it a little less daunting. According to Julie, that's the best part of the job.

Julie decided to share her expertise on TikTok, where her insights could reach a wider audience.

"I knew I had a lot of interesting information about death and dying that most people don't know about. I want to normalize death by educating people about it. I went home to visit my family, and my tween nieces were on TikTok making dance videos. I later went on TikTok to see their dances. This gave me the idea of starting my own TikTok about death and dying," she told The Sun.

The idea caught on quickly. Julie soon racked up more than 400,000 followers, with millions of views for multiple videos. Clearly she had some valuable knowledge.

In one of her videos, she explains how many of the death processes we find morbid, are actually quite normal. Changes in breathing, skin color, fevers … all normal. Messy, but normal. Even the "death rattle," despite its scary name, is very natural, as the brain is no longer able to tell the throat to swallow saliva. "Terminal secretions," she calls it.

@hospicenursejulie #hospicenursejulie #nurse #learnontiktok #ForzaHorizon5GO #nursesoftiktok ♬ original sound - 💕 Hospice nurse Julie 💕

Julie also discusses the "rallying" phenomenon, where a terminal person seems to make a swift recovery—even regaining an appetite and bouncing back to a personality—before ultimately passing within a few days, or sooner. She explains that, where no one knows exactly why this happens, she always informs her patients and families so they're not caught off guard. I cannot imagine the anguish people go through who do not know this.

@hospicenursejulie #hospicenursejulie #nurse #learnontiktok #nursesoftiktok ♬ original sound - 💕 Hospice nurse Julie 💕

One person asked, "Does knowing all of this in depth make death less scary for you?" To which Julie simply replied "Yes–I'm not scared at all."

Natural death, Julie says, is not uncomfortable. Because many people die from accidents or diseases, we tend to equate death with suffering, but that does not have to be the case. In fact, Julie shares about people seeing angels, even loved ones who have passed. Often they manage to say "I love you" right before death.

@hospicenursejulie Reply to @spymylittleye #greenscreen #hospicenursejulie#angel #LevisMusicProject #nurse #learnontikrok ♬ original sound - 💕 Hospice nurse Julie 💕

Hospice care is undervalued, at best. And at worst, it can be demonized, as many buy into the myth that hospice companies make money off of killing patients (another notion Julie politely debunks). This is what makes her channel truly special. Julie makes death—the ultimate unknown—a little less frightening with the power of education and empathy. It's something she does on a day-to-day basis. But now we all can benefit.


You can check out even more of Julie's videos on TikTok, under her handle @hospicenursejuile

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Compassion fatigue is real, but this hospital's approach might just be the antidote.

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Dignity Health 2017

Musician Terrie Miley always wears a smile. What makes her unique is who she smiles for, and how she keeps it up.

As a hospice musician, Miley’s everyday work involves going to see patients who are in their final hours and using music as a way to help people tell their stories. "The story of their lives," as she puts it.  

Image via Dignity Health/Upworthy.

While many of us would do anything to avoid the idea of coming face-to-face with our own mortality or sharing space with a total stranger who is on the brink of death, Miley has chosen to face it every single day in hopes of bringing them peace in their final hours.

Most people who volunteer walk away with the knowledge that they’ve made a difference; Miley walks away knowing that she has just said goodbye.

But with such intense emotional labor comes the need for self-care.

For Miley and her colleagues at Dignity Health, the team decided to enact a mindfulness program consisting of meditation and breathing exercises to help their employees feel present during those long, hard hours on the job.

The premise for this program is a simple but powerful one: To be compassionate towards others, we first have to be compassionate toward ourselves — if only for a few minutes.

For hospice workers like Miley, then, finding moments of pause gives them the peace and attention needed to do this work in a healthy way.

And when it's built into the work culture, this kind of reflection isn't just an afterthought. It's a practice, and it's one that's transforming how caregivers like Miley approach their jobs.

How do they do it? Have a look for yourself:

This program helps you focus on the now. And the effects on your health can be enormous.

Posted by Upworthy on Tuesday, August 29, 2017

Miley knows better than anyone that while helping these patients is rewarding, it can take a mental and emotional toll on caregivers.

When offering the humble gift of musical bliss and human connection, it’s not always easy being confronted with life’s biggest hurdle: death.

"Hospice is challenging work, in ways that you might not consider," Miley explains.

Because Miley’s job description includes being present for those who don’t have loved ones in their final hours, it requires a level of emotional investment that she has to sustain in every moment of her work.

Whether it's a guided meditation after lunch or a walking meditation on a break, these moments of reflection make all the difference for caregivers like Miley, who too easily forget themselves while caring for others.

For Miley, it’s a reminder of why we need to slow down during the daily grind.

Life is short, and while that knowledge may sit in the back of our minds, it’s important to remember that our day-to-day existence is about so much more than work.

Miley's story is an important reminder that for every connection we offer to others, it's just as important to pause and reconnect with ourselves.

To make this work sustainable, then, mindfulness is everything.

"When you’re in hospice, it is definitely about the moment. It is about being present with that person and creating healing in that moment," said Heidi Summers, senior director of mission integration and education at Dignity Health.

Miley puts it best when she says, "Being present is the only thing that matters."

Heroes

How a hospice worker helped this family through their tough time.

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Prudential

When Christine Powers was diagnosed with multiple sclerosis in 1995, she took it in stride.

No one would have blamed her if she had complained, but that wasn't her way.

Christine in New York City. All photos via Gerry Powers, used with permission.

It was the same thing when Christine was diagnosed with malignant skin cancer in 2000.

Even when the cancer reappeared later, seven years after being cancer-free, she kept her composure. That time, the cancer had spread to her brain. After multiple operations and a multi-year battle, it was clear the cancer was terminal, so her family opted to get Christine hospice care.

For anyone not familiar with it, the term "hospice" can seem like it carries some mysterious and scary connotations, but it actually refers to a type of medical and emotional care for people in the last stages of a terminal illness. It helps them and their families manage the end of life with as much compassion as possible by focusing on the quality of life instead of continuing often painful treatments to prolong it.

Samantha Lee is one of the hospice aids who helped care for Christine in her last years. 

"Christine was the youngest patient I ever had," Samantha says. "I was in love with that family so much."

The Powers family.

Hospice nurses and aides try to ensure a patient isn't in pain and help them — as much as possible — live their final days with dignity.

When Samantha helped take care of Christine, she came to the house five days a week, four hours at a time. She would cook, wash clothes, run errands, talk with Christine, and then work with her to try to keep her energy and mood up. She helped her do some exercises, and she encouraged her to do one major project a day to keep her spirits up.

"Our home aides knew Christine really, really well," Gerry Powers, Christine's husband, fondly recalls.

Gerry and Christine Powers.

And they were with her until the end, making her as comfortable as possible and the family as cared for as possible.

"You can be intellectually prepared for a loss, if someone in your life is declining," Gerry says. "But I don't think you’re ever really emotionally prepared when it happens. That’s the thing."

Samantha says people's eyes get big when she tells them she's a hospice worker, caring for patients at the end of their lives.

"They'll say, 'Oh, you’re a hospice aide? Wow, must be hard. Why do you like that?'" she mimics over the phone.

But you can tell by her voice just how much she loves her job. She says she's grateful that she can be there to help the patients and their loved ones through this difficult time.

"[This job] changed me around," she says. "It made me more soft on the inside, more compassionate and humbled."

One thing Samantha has learned from her work is the importance of having conversations about death and dying early on.

It's not an easy thing to do, but talking openly about death can bring some comfort to the end of life.

Especially in Western countries, talking about death is kind of taboo and invokes anxiety and fear in many of us. But if a loved one dies without ever having shared their end-of-life wishes, it can add extra stress and confusion during crisis mode.

"You have one family member that feels that this is not the way to live, that [the loved one] should go," says Samantha. "Then you have the other family member that wants to hold on."

She says that if people start conversations about what they want when they get to the end, then it shouldn't be a problem when the time actually comes.Family members will know exactly what they need to do and be able to spend more time focusing on their loved one and taking care of themselves.

Gerry and Christine.

Samantha says that her work as a hospice worker has also given her a new perspective on life and death.

"I look at life much different," she says.

"It really doesn't make sense to be so angry and have a lot of hatred in your heart because nobody knows when their time is up."

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