Hospice is not what you think!

Hospice has a terrible reputation, and I want to replace fear with facts so families stop waiting until the last days. I break down what hospice really does, why some people can improve on hospice, and how to talk about comfort and dignity before a crisis hits. 

• hospice as a shift from cure to comfort, quality of life, dignity, and support 
• the six-month guideline and why doctors cannot predict the timeline 
• how someone can stabilize and graduate off hospice 
• why aggressive treatment is not automatically the noble choice 
• what hospice provides, including nurses, aides, equipment, medications, and family support 
• why caregiving burns people out and how hospice supports caregivers 
• why families delay, redefining hope, and the cultural obsession with “fighting” 
• hospice versus palliative care and when each one fits 
• the emotional reality, family conflict, and the conversations illness forces 
• signs it may be time to ask about hospice 
• what a “good death” can mean and the questions every family should answer early 

If this episode helped you, touched you, or made you think about someone you love, please share it with a friend or a family member. 
I want to remind you before we continue that these honest conversations about aging, life, reinvention, and all the messy stuff nobody talks about, make sure you also check out my other podcasts. 
You can find anything at marcybackhusmedia.com

Transcript

Welcome And Why This Matters

SPEAKER_00 0:05

Hello, and welcome to Aging A for Sissies. My name is Marcy Beckett, and I am your host. Today, this is a conversation nobody wants to have, but everybody needs to hear. I want to first welcome you back to Aging A for Sissies, the podcast where we talk honestly about getting older, changing bodies, complicated families, weird aches, Medicare confusion, and all the things nobody warned us about after 60. Or if they did, we didn't listen. Hi, I'm Marcy, and around here we're not aging quietly, we are aging intentionally. Now, this episode, oof, this one really matters, and I've done it before, but it's been years since I've done it. Today we are talking about something people are terrified of hospice. And the second people hear that word, they immediately think, oh God, that means they're dying tomorrow. And honestly, the reason I'm doing that this episode is because that is a complete misunderstanding. And that misunderstanding keeps a lot of people from getting help they desperately need. Hospice, just I gotta say it, hospice is a lot the last minute. So if that's what you think it is, listen because you're gonna learn a lot. Today we're gonna talk about what hospice actually is and what it is not. Why people wait too long, how people can actually improve on hospice. Yes, people can actually graduate off hospice. And I know that is counterintuitive to what you've been taught, but it's the truth. What families need to know, how hospice helps caregivers too, and why this conversation should happen before a darn crisis. And let me say this right now hospice is not giving up. And sometimes hospice is the most compassionate, loving, peaceful decision a family can make. And frankly, America does a terrible job talking about death, aging, caregiving, decline, and comfort care. And you know, I that is my biggest pet peeve. I know for a fact the genetic disorder I have, I should have died. The average lifespan is 50. I've outlived it. I get it, I understand that. I'm trying to enjoy my life. I'm not giving up. Death and as much as I would not want to leave this world, I'm I'm and when it comes, it comes. And that's how I feel. But I know a lot of you don't, so we'll discuss what this really is. People will discuss cholesterol medication for 45 minutes at brunch, but mention hospice and everybody suddenly needs to go check the potato salad. So today we're go doing the uncomfortable conversation because aging ain't for sissies, people.

Life Updates And Memorial Day Plans

SPEAKER_00 3:12

All right, before we get started, what's happening with me? Life is normal. And you know what? Normal is underrated. I am enjoying my life right now. Very calm, very quiet. Kids are both doing well. Um, Alec is just left today on a two-week trip where I won't be able to talk to him for two weeks, and that always worries me because he's my adventure guy. He's going down a river, climbing granite. I don't know. He's out there and about there. Kyle is trying to hold it together and working through PTSD and working through anxiety and several of the other issues that Kyle deals with, but Kyle is working hard at it and doing a great job. And I'm very proud. Very proud of Kyle. And Craig and I are just living our best life. We're walking, we're coming up here. This is Memorial Day weekend, hard to believe. It's a little chilly out in Chicago right now. It's gonna be warming up, though. Let's see. Um Sunday, I'll I'll do a little barbecue out on our big patio here for Craig and I. Monday, we're gonna um I have a pedal assist bike, not an electric bike. It's an electric pedal assist bike. It has no throttle. So I stop pedaling, it stops assisting. It's not fast and it's not scary, but it allows you to ride more comfortably longer distances. It's called a flat foot technology bike. When I stop, both my feet go down on the ground. It was built by Trek. It is a beach cruising style bike. I love it, but they are too heavy to put on car racks. And my old car, we couldn't put it in the car. So I bought a new car a couple months ago. I bought a Vovo small SUV, medium SUV. And Craig and I are gonna put the bikes in the back of the car because that's the whole reason I bought the car. And we are gonna go out to Fox Run, Fox River, and do a bike ride. Drive driving your bike here in the city is scary. And the lakefront, although it's beautiful, riding on it is absolutely terrifying with people in their fast bikes. So we got the car. So Monday we're gonna pack a picnic. I've got a little basket on my bike, and we're gonna go for our first bike ride outside of the city. And I'm excited. I hope you have some fun Memorial Day plans planned. And then Tuesday we have dinner plans on the top of the London House, which is a beautiful hotel on the river here in Chicago, right down the street. And we have dinner reservations for the rooftop because this is rooftop season here in Chicago, and I am gonna start the season off correct with a nice rooftop dinner. A friend of ours, Anne, is gonna join us, and then we're our 50s and I'm sorry, our 60s and 70s social group is going for a walk through the Gilded Age of Chicago. So those are the things that are coming up for me. We have concert after concert coming up this season. I am gonna annoy you with my awfully fun life coming up because one of the things in Chicago, we have a hundred days of summer, and you better enjoy every single solitary one of them because before you know it, you're hermetically sealed back into your house. So enough about me.

The Biggest Hospice Myth

SPEAKER_00 6:30

Let's get into the biggest myth about hospice. The biggest myth is hospice means death is immediate. No. And if it is, you called too late. Because hospice is for people with serious illness when the focus shifts from cure at all costs to comfort, quality of life, dignity, and support. Okay, let me say that again. Slower. Hospice is for people with serious illness when the focus shifts, and that illness can be heart disease, it can be a lot of things, but when it shifts from there is a way to cure this or we're working on a cure to nope, let it work its course and live your life, you're going for comfort, quality of life, and dignity and support. That's that's when you call hospice. Now, medically, hospice is generally for people believed to have about six months or less to live if the disease follows its expected course. So that is something you need to know. But we're talking you should be calling at the beginning of that six months, not the end. So if if people are believed to have about six months or less to live, and the doctor states that if that's how the disease is going to follow its course, that's when you call hospice. But here's the important part doctors are not fortune tellers. People can stabilize, people can improve, people can rally, and people can absolutely graduate off hospice. And that shocks people. Are you shocked? Are you gobsmacked? Is your jaw on the ground? You think hospice is a one-way door? If you use it correctly, it may not be. Someone can improve, they can regain strength. Now, I want you to understand why, because hospice gives them care. Sometimes it's the care to get them back on the road to recovery. Hospice can improve, regain your strength, stabilize medically, and no longer meet hospice criteria. And hospice care stops. Doesn't mean it might not come back. And it happens all the time, especially with these things, these diseases. Heart failure, COPD, certain cancers, dementia fluctuations, kidney disease, and serious frailty after hospitalization. You know, the older we get, those hospitalizations take a toll on us. So the doctor says they're looking at your numbers, they're looking at everything, and they're going, Oh, we're on the downside. But sometimes what a person actually needs to improve is pain control, oxygen, proper support, medication management, nutrition help, emotional care, and fewer exhausting hospital trips. And once that happens in hospice, they improve. Imagine that. Sometimes people do better when we stop torturing them with endless medical chaos. The calm that comes to life, the loving care that comes to them can work miracles. Think about that for a minute. So

Quality Of Life Over More Treatment

SPEAKER_00 10:20

this week's I'm not doing that segment. I'm not doing this thing where we pretend aggressive treatment is automatically the noble choice. There I said it. I will not do aggressive treatment on myself. And my husband knows that. Some families will put a 92-year-old through surgeries, ICU stays, feeding tubes, ambulance rides, another miserable hospitalization without ever asking. But what does mom want? Sometimes people are fighting for more time. Sometimes they're fighting because nobody can emotionally handle letting go. Those two are not the same thing. So for me, I'm not fighting for extended life. I want quality of life. Some of you know, some of you don't. I have a lot of medical weirdnesses. Recently, we have found out I have a blood disorder that creates blood clots. But I also have a genetic disorder with a connective tissue issue, which means I don't have strong veins. Usual course of action for blood clots are blood thinners. They're a death sentence for me. If one of my veins was to, one of my big veins was to rupture and I was on a blood thinner, I would have no chance. But I've decided when I fly, because flying is where I got my first blood clot, is where blood clots happened. I've decided to go ahead and take a blood thinner when I fly. It works in my body for 12 hours. During those 12 hours, something bad can happen. But I don't want to sit around and not live my life. If I go, I go. And for me, I believe that my time was decided a long time ago. When I go is when I'm supposed to go. So I am not living with delusions of grandeur. And that's me. That's my what I'm not doing this week. Okay, let's get back to it. You've

What Hospice Provides Caregivers

SPEAKER_00 12:33

learned a little bit more about me, maybe more than you wanted to know, but what hospice actually provides. People also think that hospice means someone comes by once and hands you pamphlets. No ma'am. Hospice can provide nurses, aides, social workers, chaplains, grief support, medical equipment, medications related to comfort, hospital beds, walkers, oxygen, wheelchairs, and caregiver support. And honestly, for caregivers, this can feel like somebody finally throwing you a life raft. If you have been a caregiver for a medically fragile person for a very long time, hospice is your friend. Because caregiving is brutal. It's physical, it's emotional, and it's financial. A lot of people caring for spouses or parents are exhausted beyond words, and they feel guilty admitting it. Hospice doesn't just care for the patient, they care for the family, and that absolutely matters. Neither one of my parents ended up in hospice, and that was because both of my parents, both of my parents chose their time of death. And how that happened was my dad was in dementia, he got a bladder infection, and he refused to take his antibiotics. And when his caregiver asked him, she said, Joel, you understand what that means, he said yes. And within a week, my dad passed away. He chose his time of death. Mom also chose her time. Mom had broken her hip. No, her pelvis, actually. It just fractured when she was standing. And she had been in the hospital and then went to a care center. And in the care center, she got um a cold or bronchitis, and my mom had a COPD. And when my mom got to the hospital, she said she wanted no heroic measures, which meant no antibiotics, no nothing. So by the time I got there, it was time we talked. My sisters were there, my brother was there, we talked with my mom, we talked with the doctors, and we started morphine. And we just amped up that morphine, amped up that morphine, and eventually my mom passed away. So both of my parents chose their time. Hospice was not necessary, but if hospice is necessary, I want you people to do this.

Why Families Wait Too Long

SPEAKER_00 15:20

Okay, why do people wait so doggone long? Why? Most families wait way too long for hospice. And the experts say it all the time. People often enter hospice in the final days instead of the final months. The final months, people. If you are in the final months, if it is not looking good, you need to call hospice. Why? Because families hear hospice and they panic and they think we're killing all hope. Oh God, dad's gonna die now. No, you're redefining hope. Maybe hope now looks like pain control, sleeping peacefully, sitting outside, eating favorite foods, seeing the grandkids, avoiding another terrifying ER visit, dignity, comfort, and calm. My gosh, don't your loved ones deserve that? Hope changes. We're not giving up, we're getting hope. That's not failure, that's humanity. And can't we discuss for one moment how absolutely obsessed our culture is with fighting? Oh my god, fighting for everything. I had a cat that was dying, and the vet's like, he well, he could live a little longer if you give him fluids at home. People, do you know what it's like to give a cat a bag of fluids at home? I will never do that again. It was horrible for him, and it was horrible for me, and it still brings me to tears. And that's just a cat. We fight for things we shouldn't fight for. Everything is she's a fighter. He battled bravely, keep fighting. And yes, sometimes fighting makes sense, but sometimes peace makes sense too. Nobody gets a medal for suffering more. No one.

Hospice Versus Palliative Care

SPEAKER_00 17:13

Okay, so here's a good question. What the heck is the difference between hospice and palliative care? This confuses everybody. So let's simplify it. Palliative care. What is palliative care? It helps manage symptoms and quality of life during a serious illness. You can still receive treatments. Here's the difference. You can still receive treatment. Palliative care is if there's still hope. Chemotherapy, surgeries, aggressive medical care. Palliative care focus on comfort and treatment together. Hospice happens when the focus shifts to comfort rather than cure. That's the difference. And honestly, I think more people should know about palliative care way earlier because no one should be living in uncontrolled pain while trying to navigate an illness.

The Emotional Family Fallout

SPEAKER_00 18:09

The emotional side. Now let's talk about that emotional part nobody prepares you for. Hospice forces families into conversations they've avoided for years, and suddenly people are discussing wills, fears, regrets, funeral wishes, DNRs, family conflict, unresolved relationships, and what happens next. And families can get real weird around illness and death. Old sibling rivalries come out like bats from a cave. One sibling suddenly becomes the expert. One disappears entirely, one is angry, one is in denial, one is googling miracle treatments at 2 a.m. And meanwhile, the patient is sitting there like I would actually just like a milkshake. Can somebody just get me some in and out? And the family is all up in their feelings. Sometimes hospice can bring calm to emotional chaos. Not always, but sometimes. And sometimes families start telling the truth. I'm scared, I'm tired, I don't know what to do, I don't know what to say, and I don't want them to suffer. Those are human things to say. I

Other Podcasts And Where To Find

SPEAKER_00 19:31

want to remind you before we continue that these honest conversations about aging, life, reinvention, and all the messy stuff nobody talks about, make sure you also check out my other podcasts. I have Inside Marcy's Mind, where we talk about life, relationships, trends, travel, technology, and surviving modern life without throwing your phone into Lake Michigan. And for my sober community, or my community that struggles with addiction, I have unbottled, where we have raw, honest conversations about recovery, alcohol healing, and rebuilding your life. You can find anything at Marcybackus Media.com. Okay, now I want to get back to finishing up about hospice. All

Signs It May Be Time

SPEAKER_00 20:16

right, I'm not a doctor, but here are the signs that families may want to ask about hospice. Or if you need is hospice needed? I keep saying that wack-a-doodly. I've done this section like four times. Repeated hospitalizations, increasing weakness, significant weight loss, sleeping most of the day, frequent infections, worsening confusion, advanced dementia decline, serious breathing struggles, inability to recover after illness, and someone saying, I'm tired. And I really want you to hear that one. When someone says I'm tired, pay attention. They're telling you something. It is a sometimes they tell us gently before they have to tell us directly. And one thing I really want to say here choosing hospice does not mean stop loving someone. Sometimes it means you love them enough to prioritize comfort. That's very different. Do you understand that? It's very different.

Planning For A Good Death

SPEAKER_00 21:23

What a good death actually means. Nobody likes this phrase, but honestly, I want a good death. How about you? We should talk about it more. A good death doesn't mean perfect, it means less fear, less suffering, dignity, support, comfort, being heard, not dying alone, and having wishes respected. Sometimes hospice allows families to actually be a family again instead of full time medical crisis managers, instead of medications every 11 minutes, ER panic, paperwork, chaos. People can sit together, talk, watch old movies. Hold mom and dad's hand. Rest. That matters. I don't want to die in chaos. How about you? All right. These are questions every family should ask, and I'm going to have them on my website, Marcy BackusMedia.com. These are a conversation every adult should have before crisis happens. You don't want to have this in the ICU waiting room at two in the morning while everybody's crying and panicking. What matters most to you medically? Would you want CPR in severe illness? What quality of life matters to you? What scares you most? Who makes decisions if you cannot? And do you want to stay home if possible? And what does dignity mean to you? Answer these questions before. Preparation is kindness. It is a loving gesture to the people you love most. I think hospice has one of the worst PR problems in America because when people hear hospice, they hear hopelessness. But often hospice is relief, support, comfort, honesty, dignity, and peace. And sometimes unexpectedly, it's even improvement. Some people absolutely do graduate off hospice. That surprises families every day. So if there's one thing I want you to take from my episode, is this hospice is not about giving up on life. No, it's not. It's about caring for the life that's here right now. It's for caring about the life that's here. They're still here. Care about them. And sometimes that care changes everything.

Share This And Final Takeaways

SPEAKER_00 23:36

I want to thank you again for always spending time with me. If this episode helped you, touched you, or made you think about someone you love, please share it with a friend or a family member. If you have siblings and you're in the midst of it, share this episode with them. Because these conversations matter. And honestly, the more we talk openly about aging, caregiving, illness, and the end of life care, the less terrifying it becomes. So until next time, I want you to take care of yourselves and take care of each other. And remember, around here we're not aging quietly, we're aging intentionally. Why, everyone. Go out and do something positive.