The Widow Wore Red: A Caregiver’s Journey Through ALS, Loss, and Healing with Rachel Kerr Schneider - Episode 220

In this episode, host Diane Carbo, RN, sits down with Rachel Kerr Schneider, the inspiring author of The Widow Wore Red.

Rachel shares her deeply personal, powerful journey of navigating life after her husband’s shocking ALS diagnosis, stepping into the role of a primary caregiver in her mid-40s, guiding her young children through profound grief, and ultimately finding the strength to rebuild her life.

📋 Episode Highlights

• The Reality of ALS: Rachel opens up about the devastating timeline and lack of a known cure for this rare, motor neuron-destroying disease.
• The Upcoming Book Trilogy: A sneak peek into Rachel's upcoming books detailing addiction battles, blended family dynamics, and a beautiful wedding in Israel.
• The Forgotten Workforce: Shining a light on the 5.4 million young children in the U.S. who act as silent caregivers.
• Shifting Roles: Transitioning from an intimate romantic partner to full-time physical caregiver.
• Strategic Secrets: Why Rachel and her husband chose to wait months before sharing the terminal diagnosis with their sons.
• Faith vs. Religion: Moving from rigid theology to a vibrant, relationship-driven "supernatural superpower" that gets you through exhaustion.
• Setting Boundaries: The crucial need for Family Caregiver Contracts and asking the tough questions before crisis hits.
• Celebrating Loss: Why the widow chose a bright red dress for her husband's celebration of life.

💡 Key Themes & Deep Dives from the Episode

💔 The Sudden Shift from Partner to Caregiver

Rachel opens up about how caregiving for a spouse with ALS slowly but steadily changes the dynamics of a marriage. Going from an intimate partner to operating heavy machinery like a Hoyer lift can take a heavy emotional toll on both the patient's ego and the caregiver’s mental health.

👥 The Invisible Workforce: Young Caregivers

A heartbreaking portion of the episode focuses on the 5.4 million young people and children who act as caregivers in the United States alone. Rachel and Diane discuss how these children often hide their burdens from teachers and friends, carrying trauma that manifests uniquely in every child.

"Faith doesn't remove exhaustion, but it gives us the ability to endure." — Rachel Kerr Schneider

🛡️ Navigating the Caregiver Public Health Crisis

Diane drops some staggering statistics about the current healthcare system. With unsafe hospital discharges on the rise and heavy cuts to home care reimbursement, an estimated 63% of family caregivers become seriously ill with a chronic illness or pass away before the person they are caring for.

📝 The Power of a Family Caregiver Contract

To prevent burnout, resentment, and financial ruin, Diane strongly advocates for creating a Personal Care Agreement or Family Caregiver Contract.

• Establish boundaries regarding what personal care you are comfortable providing.
• Secure financial compensation if you are forced to leave your career to provide full-time care.
• Build a relief support network where family members must either contribute physical time or financial support to hire outside help.

✨ Why You Need to Listen to This Episode

If you are currently caring for a loved one, feeling isolated, or trying to navigate the heavy waters of grief, Rachel’s story is a beacon of hope. It is a raw, honest look at the ugly parts of degenerative disease, balanced beautifully with an uplifting message about relationship-driven faith, boundary setting, and learning to celebrate a life well-lived.

Find out why Rachel chose to wear a bright red dress to her husband’s celebration of life—and how that choice can inspire you to change your own perspective on loss. 🌟

📥 Join Our Community & Listen Now!

Don't navigate this journey alone. Hit Play on the audio player above to listen to the full, unfiltered conversation!

Podcast Episode Transcript

Diane: Welcome to the Caregiver Relief Podcast, where we help caregivers navigate the challenges of caregiving with knowledge, compassion, and support. I'm your host, Diane Carbo, RN, and today's episode is one that will really, truly touch your heart. We're joined by Rachel Kerr Schneider, author of The Widow Wore Red, who shares her powerful story of caring for her husband through ALS, navigating widowhood at 49, and helping their children through grief.

This is a conversation about love, loss, faith, and the strength it takes to rebuild your life when everything changes.

Diane: Rachel, thank you so much for joining us today. you have a very powerful and personal story. And by the way, I love The Widow Chose Red.

Rachel: Thank you, Diane, and thank you for the invitation.

It's an honor and a privilege to join you for a few moments today.

Diane: Yeah. Can you tell us a little bit about yourself and what led you to write The Widow Wore Red?

Rachel: So I will tell you that, basically I knew while I was living this that I was going to have to get this story down on paper. I knew that God had put me in this place and in this situation because there was a message, a message that he wanted to get out.

And While I was living it, I knew I was going to be writing about it and talking about it one day. Because what I found for me is that, number one, I didn't know a thing about ALS. I'd never heard of it, and that is still not unusual because it is a somewhat still of a rare disease.

Only about 30,000 people are living with it at any given time in the United States, and there are only about 5,000 people that are diagnosed every year. But the really terrible thing about it is all of those people are terminal. They will die.

There is a three to five-year window. They literally tell you to go home, get your things in order.

And they still have no known cause, and there is no known cure. So it is a disease that, a slow progression. You being a nurse know this. it just slowly paralyzes the body, because the motor neurons are dying, and yet the brain stays fully intact.

Diane: Yeah.

Rachel: And so they, they believe now, or there are some scientists that, that believe that because it is a neurodegenerative disease that there are commonalities with Parkinson's and Huntington's and Alzheimer's, and that if they can unlock the key for maybe one of these, that it will help it, to maybe unlock the key

Diane: All of them.

Rachel: Exactly. Yeah. Yeah.

Diane: Wow.

Rachel: Yeah.

Diane: I have to ask, is there a genetic, predisposition for this?

Rachel: There are two types of ALS. One is sporadic, which is just like John's was. It just out of the clear blue, no family history. And then there is another one that is familial, where you can trace people and people can carry the gene and yet not get the disease. But yeah, it's brutal.

I wouldn't wish it on my worst neighbor, and I didn't know, I didn't know the first thing about it. It's only been around for about 175 years. you know, that we've come to know about it like we do now.

Diane: I've worked with, patients with ALS and, the impact it has on both the patient themself and their, families is heartbreaking.

Rachel: And I think too, Diane, and you're probably very much aware of the fact that the mental health component, you think about delivering a terminal and there's nothing, there's no, you could maybe get in a trial, but the chances are very small.

And at least when they tell you've got a cancer or something, there's, they have something they can try, right?

Diane: Yeah. For the most part. For the most part,

Rachel: Yeah. For the most part, unless you're at a stage IV

Diane: Yeah

Rachel: and you just found it, usually they'll try something.

Diane: Yeah.

Rachel: There is literally nothing. And that is, I think, the part that is so hard for your rational mind. We live in the United States of America.

Diane: Yeah.

Rachel: Anything is possible in America, right?

Diane: Yes. yes. Yeah.

Rachel: So it does, it really does cause you to go, "Wait a second." But I wrote the story. This is the first in a trilogy, so this is the first part, the story about John and I and his illness and his death.

And then the second book, which is coming out around Father's Day, is, under the same umbrella of The Widow Chose Red, The Boys, the Bible, and the Battles. And it will tell, it'll chronicle the story of how I raised the boys at 10 and 14, how the oldest went down the lane of addiction, how we fought that and dealt with that.

And then the third book will come out next year, and that will tell how I met a widower who lost his wife to breast cancer six months after John died, left him with four young girls. And we dated long distance for 10 years while we got all these kids grown up. And three years ago, we took them all to, Israel and got married at the Sea of Galilee. And now

Diane: Oh.

Rachel: Yeah, now

Diane: How beautiful

Rachel: that will be called God, the Guy, and the Girls.

Diane: Awesome. oh, you just gave me goosebumps.

Rachel: Aw. I just, there's a lot to this. There's a lot to all of this Diane,

Diane: Yes

Rachel: and and I really just wanted to, 'cause I really just wanted to give each part of the story the attention that it needed. And

Diane: Yes

Rachel: and, the boys and the addiction, the boys actually have contributed to this second book. So it's so important, too, to get their perspective. And I actually just left an event a couple of weeks ago, Diane, where they were talking about there are, you mentioned before we started the broadcast about you being a caregiver at a very young age.

Diane: Yeah.

Rachel: There are approximately 5.4 million young people

Diane: Yes

Rachel: children

Diane: Yes

Rachel: who are giving care.

Diane: Yes.

Rachel: And it is like a forgotten, they are like a forgotten segment 100% of society.

Diane: Yes. Yeah. That and in fact, I'm doing a podcast with another, a woman who owns a home care agency. And we're gonna have that discussion on how it's impacted our lives.

Rachel: Yes

Diane: Because we were. and young caregivers are so ignored, and they need as much, if not more, help than the spousal caregiver or the family caregiver.

Rachel: Yeah. and they're afraid to tell their friends.

Diane: Yep.

Rachel: They're afraid to tell their teachers

Diane: Yep. Yep

Rachel: If they have to miss class because they had to take them to the whatever it is. They live in fear, and they're carrying this burden. And most of society is not even aware of it.

Diane: Yes. My mom became diagnosed with lung cancer. Never smoked a day in her life. I'm so sorry and, I was a junior, senior in high school, and in my senior year of high school, and I went to a small Catholic school, so I'm this good kid, ha ha ha.

I skipped out of school every day at lunchtime, just made sure that they knew I was there, I'd already been accepted to nursing school and stuff, and went home to help my mom. I would walk, literally walk home because I didn't have a car, and it was about five miles. Oh. And I would walk along the highway every day to get home so that I could help her with the daily chores that she needed to get done.

So I understand, what kids go through and, what a challenge it is. But, I want to talk to you now, how did your role as a wife change as you became a caregiver?

Rachel: It's a slow process, but it's steady, right? Yes, it is. And, feel the changes because they are real.

Diane: Yes

Rachel: And I think I told you, I never thought of myself as a caregiver. And like you said, most people by the time it, you become one, there's no preparation. You're usually just thrown into it, right?

Diane: You are thrown into it, and most people don't see that, like you're saying, it's a slow, steady process.

You start doing things like maybe grocery shopping for somebody, your family member, or, taking them to the doctor's, once in a while, but you're not going in. There's so many things. And with you, you go from being, your lover, your partner in life, your partner in crime even sometimes,

And you're a parent to two children, and slowly but surely over time, that evolves into, you're the caregiver. And, it's hard for many people to make that change, and you did it at such an early age.

Rachel: I feel like yes, 'cause most of us are thinking we're going to do this with our parents when they get older.

Diane: Yep.

Rachel: We're used to doing it with our children when they're younger.

Diane: Yeah.

Rachel: But you really don't ever think about when you walk down the aisle that you're going to be, maybe when you're older, right? But not in your mid-40s. And that is still, I know a lot of people think that's old, but that's still relatively young in the course of in the course of your life.

Diane: Yeah.

Rachel: And and I think too, it's especially difficult When it, the husband who's used to being the provider

Diane: Yeah

Rachel: who's used to being the one to go out and work and all of that.

Diane: Yes.

Rachel: And not all, and his, but his body is physically deteriorating. I mean

Diane: Yeah

Rachel: and to have to depend on anyone else, and especially maybe even your wife, and yes, the person you've been so intimate with and

and the person that you shared and built all of these hopes and dreams, and then to go, "Wait a second." And my husband, I will tell you, he knew. He was like, you're gonna take care of me?" And I can remember times he'd look at me, his speech wasn't good and, he'd look at me like, "You're gonna..."

You know, I'd go, "Okay, come on. I'm gonna move you from the bed to the wheelchair." And I could see his eye, his eyes rolling or, oh my gosh, the, the lift. I can't Yeah ... the Hoyer lift.

Diane: The Hoyer lift.

Rachel: Ugh.

Diane: The goddamn Hoyer lift.

Rachel: Diane, I'm survi I did it once. He was spinning around the room.

It was like an episode of Lucy and Desi.

Diane: Oh, God.

Rachel: And I could just, I was just like, "Okay, I'm gonna get you down, I promise." And when I finally did, he just, his. I said, "All right. I'll never do it again, I promise. I'll never do it again."

Diane: Oh, you know what? We put so much pressure on the family caregiver to perform, services and procedures and care once expected only by to be done by healthcare professionals.

And all of a sudden, and I can see, I've had men become, husbands, I've witnessed them when they're being cared for. They're angry because they can't do what they want. they're dealing with their ego, their manhood, the not being able to be the provider anymore.

And, they're angry that, and they, and who do they take it out on? I've seen this a million times. the person that they love most and depend on most. And it's really hard to deal with.

Rachel: Yeah. You are absolutely right. and, you know, we all have our good days, and we all have our not so good days and yet there is so much, emotion that's tied up with this whole caregiving journey. And then it's not just how, the caregiving decisions. You've got then, like you said, this equipment.

Diane: Yeah.

Rachel: They're wheeling it in, they're telling me how to operate it. They're, you know, a feeding tube and the whole, and you're like, "Okay, wait a second."

Diane: Yeah.

Rachel: I need a minute or two

Diane: Yes

Rachel: to figure this out.

Diane: Yeah.

Rachel: and you always feel like there's just another, there's just something else you've gotta learn how to do.

Diane: and It's more coming at you every single day. Yes.

Rachel: Yes.

Diane: Yes.

Rachel: Yeah. and sometimes, I mean, and then just even like, "Okay, and we want you to know, Rachel, if the power goes out, you're on a list so that, they know that you have equipment in the house that's important to sustain life."

I'm like Well, I never even thought about that. I never thought

Diane: Yeah

Rachel: about that.

Diane: Yeah.

Rachel: Seriously.

Diane: You know what, I want you to know, Rachel, that we are in a public health crisis right now. And it's only going to get worse. our Medicare reimbursement has, has, it delays care, it denies care, and it is, we've gone to a cost-sharing platform so that, you will have to pay more for the care and services that you are, recommended that you have done.

And what's happening is the hospitals are discharging people way too soon. unsafe discharges to home is on an increase. And what's happening is, you know, things roll downhill. And there's, they've also cut reimbursement for home care. The, and the niches are not being reimbursed to go out to supply, to provide support for the family caregiver.

So what I am seeing is family caregivers are expected to do more and more. And now they're moving hospital into the home, and they're saying how much it's going to save so much money. Guess what it's not going to save? The life of the family caregiver, because right now, 63% of the family caregivers out there, Rachel, become seriously ill with chronic illness or die before the person they're caring for.

The pressure is overwhelming, and it's only going to get worse because as they're looking to cut care, I had a son, he was in the military, and he became very ill. And I dealt with the military medical delivery system, and you often hear the veterans or even the active soldiers say it's delay, deny, and wait to die.

And that's what we're dealing with now. Your situation and what you're talking about is such, an important, and powerful message for our caregivers out there because they know that you need to let them know that they can survive. It's going to be challenging, but they can. Now you made a very difficult decision to wait before telling your sons about the diagnosis.

And that surprised me. And so I want to learn, why you did that.

Rachel: So there were a couple of reasons why. First and foremost, John was not that symptomatic. You know ALS is very slowly progressing.

Diane: Yeah.

Rachel: He just, his first sign was a dropped foot, so unless you were really watching him walk, you didn't know.

Diane: Yeah.

Rachel: He looked fine. He was diagnosed in November of '08, and it wasn't until the following summer that we told the boys. Part of that too, Diane, was, I had family who lived in another part of the world. So I was able to share with them and not worry about them interacting with anybody in

Diane: Yes

Rachel: our community, right?

Diane: Yes.

Rachel: And then John's parents divorced but were on the West Coast, so we could shared with them at Christmas.

Here's the thing Good news travels fast, bad news travels even faster.

Diane: Yes, it does. Yes.

Rachel: And so we knew that when we shared it with the boys, it was going out into our community. And we knew that

Diane: Wise choice

Rachel: it was going to be a shock.

Diane: Yes.

Rachel: And John and I just needed a little more time.

Diane: Yeah.

Rachel: And so it wasn't until that following summer that John was getting a lit- it was, you know, it was getting harder for him to button

Diane: Yeah

Rachel: or to hold things and so finally the kids, the boys realized something was up with dad.

So that's when we sat them down, and literally within 10 minutes of, them leaving the sofa, my phone started blowing up and John's did too. like-

Diane: Yes

Rachel: Sam's, And so I just think we needed to fortify ourselves because there was an onslaught, a, an outpouring of support, and yet we found ourselves trying to comfort the neighbors, the people in the community, right?

In our church. 'cause they

Diane: I get that

Rachel: they'd tell. Yeah.

Diane: Yes. And when people are supposed to be taking care of you and supporting you through this journey, they're coming to you for support. and I have to tell you, my mom had cancer, lung cancer. My dad did not talk about it. We weren't allowed to talk about it at all.

I had the caregiving role put on me because he needed to work, and he worked a lot of hours, probably intentionally, 'cause he didn't want to have to deal with my caring for my mom.

Rachel: Sure.

Diane: And, I can tell you that my dad, he wouldn't even talk to my mom and she intuitively knew that she had cancer.

But she pretended like she didn't because my dad didn't want to deal with it. And I think that it's, I applaud you and John for, fortifying your relationship, your decisions, and what, how you were going to move forward before you told other people. Because, it was a disaster, my dad. it has, it negatively impacted our whole family in multiple ways because he couldn't talk about it.

And grief is real.

And even at a young age. how did the caregiving affect your children, and, can you share what families understand about children and grief?

Rachel: Well, here's what I do believe, Diane. Okay. I think they know a lot more about it now than they did 15 years ago when-

Diane: Yeah

Rachel: when we went through it, or even when your family went through it.

Diane: Yep.

Rachel: Much more aware of mental health.

Diane: Yep.

Rachel: We're much more aware of trauma. Yes. We're much more aware of what it does to the body and mentally, physically, and emotionally. I will tell you that, and here's the thing. I thought that if I just kinda soldiered on and held it all together, my boys were watching me, right?

They're watching me.

Diane: Yeah.

Rachel: So if Mom's do- if Mom's doing okay, we should be doing okay, right?

Diane: Yeah.

Rachel: And I thought I was setting the right example, and in a lot of ways I was. they didn't see me cry a whole lot. They did see us pray.

Diane: Yeah.

Rachel: They saw me love on their dad. They helped as best they could.

Diane: Yes.

Rachel: They weren't big, strong guys. They were

Diane: Yeah

Rachel: they were, young tweens, but they would help-

Diane: Yeah

Rachel: with Dad and tuck him in and do the things. And what I know is that even though I raised these boys the same way, they both dealt with this trauma and this grief very differently.

Diane: Absolutely.

Rachel: And I think my oldest son, I think he started acting out the minute that we told him. He realized that this was not going to end well.

Diane: Yeah.

Rachel: And the youngest was so young that I don't think it really,

Diane: he really understood all that.

Rachel: so I think that in looking back, I wish that I had been a little more attuned, but I didn't have anybody, Diane, who was going through this.

Diane: Yes.

Rachel: I didn't even know anybody who was taking care of their parents. when you're in your 40s, your parents are still kind of active with it for the most part.

Diane: Yeah

Rachel: Yes.

Diane: For the most part.

Rachel: Yeah. So I didn't have anybody that I could go to and go, "How do I, you know, how do I do this?"

Or and then after John died and I realized something was going on with John getting the right kind of help.

Diane: Oh.

Rachel: And we know this even when you're a caregiver. Getting the right kind of help for people to come into your home and help you

Diane: Yes ...

Rachel: when you get to that place. Yeah. It is a whole nother...

Finding the right kind of help is a huge job. It's a huge job.

Diane: I will tell you that if you do get help in the home, and, it takes about seven people before you get to the person that meshes with you, your beliefs, your values, that you feel comfortable with providing care.

It's very hard. Very hard.

Rachel: Yeah. and I think too, and then there's, you learn the differences between skilled care and unskilled care.

Diane: Yes.

Rachel: and then, I was trying to find coverage to help me at night, right?

Diane: Yeah.

Rachel: 'Cause I needed to be awake during the day, and Diane, I thought I'd never sleep through the night again.

Diane: Yep.

Rachel: because I never thought I ever would.

Diane: I get it. Yeah.

Rachel: and then you've got people in your house overnight. You don't know if they're staying up all. They could be sleeping at

Diane: Yes

Rachel: the dining room table.

Diane: Yes.

Rachel: You don't know.

Diane: Yeah.

Rachel: And then I remember, one night, John, John rang the bell.

There was a bell on his bed, and I had somebody there. And he looked at me

We, she was in the room, and he just gave me a look that was just like, I knew she wasn't treating him well.

Diane: Yeah.

Rachel: She was talking to him negatively, all those things. And the next day I'm like, "Okay, she's done." So

Diane: Yeah

Rachel: to your point, and I don't think, because we live in such a have it now, get it now world

Diane: Yeah

Rachel: people don't think they don't

Diane: Yeah

Rachel: they think, "Oh, I'm going to make one care to home healthcare. I'm going to have the perfect person." Nope. Nope. "And it's all going to happen. I'm going to get them at the right price, at the right time, at the right"

Diane: Yeah ... "personality."

Rachel: And they don't realize what it takes to make that happen.

Diane: Well, we also have, another public health crisis. We have, for the first time in history, more seniors than youth. So the low birthrates from every generation after the baby boomers has not replaced themselves in numbers.

Rachel: Wow.

Diane: And we are really in a serious crisis. and the healthcare system has paid and treated, those that you need to come to the home and sit so badly that most of them have left.

So for the next, I will tell you right now, our generation will be the the first generation that doesn't have anybody to take care of them, and every generation after is going to suffer because of it. we need to have more babies. We need to have families. We need to have things, and it's not happening.

And I know people are rolling their eyes saying, "Oh, gosh," but solo agers and, childless couples are really going to struggle to find care. They really are, if they don't have a family caregiver. it, and I'm doing a whole series on, seniors and technology. Caregiver robots are here. And

Rachel: Yes. Yep. Yep.

Diane: I want to talk, a little bit about your faith. You know you include Jesus in your journey. And how did your faith evolve during caregiving and after your husband's passing even?

Rachel: So I will tell you, Diane, I grew up in a very faith-filled family. My, my parents were both from very, two very different faith backgrounds.

So let me tell you, I got it from all sides. I got legal, I got grace, I got liturgy, I got hymns. I got it all the time. And I just really thank my parents for doing such a good job of pouring the word in me, which they did a great job. And my parents are still alive. They're 88 years old and they're in Australia.

Melbourne, Australia.

Diane: Oh, my.

Rachel: still living independently. Thank you, Lord. But I will tell you that the shift came for me. So I always knew who Jesus was, the Holy Spirit, God the Father. I knew all of that. But I knew it within the context of religion.

Diane: Yes. Yeah.

Rachel: And what I am about now and what I know Jesus wants for us is relationship.

He just wants our heart. And relationship happens through spending time with someone. And, for me, I found that I was just, Jesus was in the room with me, Jesus was at the kitchen counter with me, Jesus was with me in the Jesus was with me everywhere, and I was talking to him all the time.

Because as a caregiver, I think we're walking on eggshells, even with the people we love the most, right?

Diane: Absolutely. yes.

Rachel: Because we don't want them to think we're mad. We're not mad at them.

Diane: Yeah.

Rachel: We're upset with the situation we're in, but it's not their fault.

Diane: Yes.

Rachel: They didn't get sick on purpose.

So it was really important for me to be able to let all of that give it all to Jesus and just say, "Okay." 'Cause I don't wanna give it, I don't wanna give it to John, although I know sometimes I will. But ultimately, "Lord, I gotta trust that you are gonna fortify me to get through this."

And so I think for me, if I didn't have that faith Diane, I dare say I would've been able to manage like I did because I ultimately, I knew who was in charge. But I will tell you, I did seek out a faith based therapist. All right? I'm a gal of action.

Diane: Yeah.

Rachel: Some people are more thinkers.

Others are more

Diane: Yeah

Rachel: feelers. I'm an action-oriented, so I thought, "Okay, I've never helped anybody die before. I don't know how to do this." "And I'm gonna be left standing when John is gone, so I need some strategies. I need some help." So I found a gal, and I remember one day I walked into her office, and I was just, my last nerve was shot.

Diane: Oh.

Rachel: I mean, done. And I said to her, I go, "I don't understand. I'm not sleeping. I'm cranky. I'm irritated. I'm not eating." I go, "And I got faith. I've got faith. Shouldn't this be easier? I know that God's in control. Shouldn't this be easier?" And she looked over at me, and she goes, "Rachel," she goes, "Jesus was a man."

I said, "Yes." And she said, "Jesus had 12 guys helping him."

Diane: Oh, all the men. Yeah, the good old boy network.

Rachel: The good old boy network, but they were there. They were there.

Diane: Yeah. Yeah.

Rachel: Okay, Diane, and here's the thing. And then I thought about it for a minute. She, so she said, "Maybe you need some help." And I said, "Okay."

But I went, I dialed back for a minute. I go, "Jesus was the Son of God." Oh, yeah. "He didn't need those guys, did he, Diane? He didn't have to have them around."

Diane: Yeah. yeah.

Rachel: He went and chose them.

Diane: Yeah.

Rachel: He chose them specifically so that he could equip them for a job to do when he knew he wasn't gonna be around to do it.

Diane: Yes.

Rachel: And do we think those disciples were helpful all the time?

Diane: I'm gonna have to say no because they were men, and not being bad.

Rachel: No, but no. They were wondering, "Okay, can I sit by your right? Who's gonna sit at your right and your left?"

Diane: yeah.

Rachel: I mean, they were, you know, they were supportive, but not necessarily helpful sometimes.

Diane: Absolutely.

Rachel: So I think that, giving that context to it, I was like, wow. our capacity is one of those things, and Lord knows Jesus had infinite capacity. We don't.

Diane: Yeah.

Rachel: And yet we keep adding that one more thing

Diane: Yes

Rachel: until we get to the place, and then we wonder, we know why we've collapsed-

Diane: Yeah

Rachel: because we, that one more thing at that one particular time absolutely put us over the edge, and sometimes to the point of no return. And so being able to be aware of that, of our own capacity, I think is one of the things that, I'm much more aware of it now, but I think it's only because of what I went through

Diane: Yes

Rachel: so much earlier in my life.

Diane: Rachel, that's a really important point I want to reiterate, is that we push ourselves beyond limits.

And, I did share with you before the podcast that I find, what I'm finding in my decades of nursing is people of faith seem to handle their, caregiving journey, and so many of them are burdened with so much more than you would even imagine, better than those that aren't people, aren't, don't have faith or, a belief in a higher power.

And, you made a comment. You read a quote to me.

Diane: Do you still have that?

Rachel: I do. I do. It said, "It, faith doesn't remove exhaustion, but it gives us the ability to endure."

Diane: You know what? And I find that to be true. I, and so I really appreciated that because, it's something that I have, discovered, and I find that it's helpful because, caregivers feel like they're a failure if they reach out to anybody.

And I think that many of them with faith at least have their religion and their beliefs to hold them together in the darkest of times.

Rachel: Absolutely. And I can remember even, Diane, we stepped outside of the country to do a stem cell treatment that at the time was not legal here in the United States.

Diane: Yeah.

Rachel: Stem cells now you can go around the corner, have them injected-

Diane: Yep

Rachel: in any part of your body. That's what 15 years will do.

Diane: Yeah.

Rachel: And I remember that doctor. We were in the Dominican Republic, and I remember he looked at us and he said, "You guys are people of faith, aren't you?" and I looked at him, I said, "Yes, we are."

And he goes, "You're going to be okay."

Diane: Yeah.

Rachel: Knowing full well what was still ahead of us. But to your point, I just think that it does, it fortifies us in a way that just gives us what we need within that minute or that day

Diane: Yeah

Rachel: or that month or that year. But it does allow us to, to keep going.

It doesn't mean anything's easy or it's perfect or it's right.

Diane: Exactly.

Rachel: But it does allow us to, to carry on.

Diane: I tell my listeners often that if you change your perspective, you change your life, and it's all about perspective. And if you can, sometimes you just have to look at your

and say, "I can't do this. I need help." And it doesn't mean you're a failure. In fact, you need help in order to continue your journey. I want you to know I lose, about two to three caregivers every year. They can no longer do their caregiving, complete their journey of caregiving because they have, become seriously ill or- several have passed. So I really think that we need to focus on our own health. Everybody, you know, self-care is a big word all of a sudden everywhere. I never heard that when I was growing up,

Rachel: Yeah, exactly.

Diane: Self-care, you're selfish. Exactly. But there is a point where we are putting so much on to those that provide care for their loved ones.

They provide one trillion, $1.1 trillion in unpaid care a year.

Rachel: Wow.

Diane: And now with what's going on with the reimbursement rates, I am afraid for caregivers because it's not sustainable. We are pushing them beyond what is humanly possible, our healthcare system. And there's a group of us trying to, make people aware and try to go for, look, encourage, healthcare reform.

Rachel: Yeah.

Diane: When you hear delay, deny, and wait to die, it's very real.

Rachel: Oh, without a doubt. And I think, too, that we just, it's an unseen segment of our population.

Diane: Absolutely. The caregivers are, invisible to everybody. And they are patients themselves because of what they're going through, and nobody's helping to provide care for them, and that's why we have to change that.

You talk about putting the I back in spirit. What does that meanfor women, or especially caregivers?

Rachel: I like to say, that it's a way of fortifying yourself, as you were just talking about. And I think you can't have spirit without I. You have to have yourself as a part of spirit.

And, that is that, for me, it's like it's referring back to that Holy Spirit which was gifted to us when Jesus left this earth, and He left the Holy Spirit inside of us as a gift to act as a comforter and an advocate. and I like to think of it as that supernatural super power that we all have, Diane.

We don't have to, we hear enough about superheroes flying around in capes.

Diane: Yep.

Rachel: We have this inside of us so that when we are lost and confused and so exhausted that we're not even sure we can take the next breath, we can call on that Holy Spirit that lives and breathes inside of us and say, "Okay, I'm not even sure what I need right now, but I need you to just hold me, take care of me, and guide me in those next steps."

And I think, I can remember days when it was just, it was minute to minute, man. I was like

Diane: Yes

Rachel: I just need to get through this next minute. I need to make sure John can go to the bathroom. I need to make sure I can get him back in the I mean, you just, you are just, your focus, you just, it becomes so clear and so narrow.

And and I think that, Diane, illness is isolating, and caregiving is also isolating because

Diane: Exactly

Rachel: together you're isolated in this space, it could be inside your own home, where the rest of the world is going on.

Diane: Yes.

Rachel: They got their own things and yet you're just focused on how do I get him in and out of the bathroom. That

Diane: Yes

Rachel: These are the things that we think about.

Diane: Exactly. Exactly. And one of the things that caregivers do consistently is they allow their outside relationships to dry up and die, so there's nothing to go, to after their caregiving journey. And I just tell people, I just tell my listeners, outside relationships are like a garden.

You need water and sunshine, and if you're not watering and putting sunshine on towards your, those around you and maintaining those relationships, don't be surprised when people aren't there for you when this is over." 'Cause the average journey of caregiving is, five years. Some are as long as 20.

But the average is five years or five and a half years. So that's a long time. People get on with their lives, and caregivers sometimes are shocked at the end of their journey when they say, who am I? Where am I? Why am I in this state?" And, "Where is everybody that I knew?"

Rachel: And you know what, which, your background's gorgeous and explains your point beautifully.

Because it wouldn't be much of a garden if there was only one flower in there, right?

Diane: Yep. Seriously,

Rachel: Right?

Diane: Yeah.

Rachel: And as you're talking, I have a very good friend of mine who's undergoing, out going through this with her mom and her dad, who do not want to leave the family home that her, their grandparents grew up in. And I'm listening to my girlfriend who comes from a large family. She's the only daughter, though.

Diane: Yeah.

Rachel: And all the brothers are way too busy, not available. Oh, can't be bothered.

Diane: Yeah.

Rachel: And she is shouldering all of it. And if I don't preach anything else, I'm like, "Girl, take care of yourself.

Take care of yourself." And I know your mom doesn't want a lift chair in there because it looks ugly, but guess what? At some point, how do you. And Diane, you might be able to speak to this because I'm like there's a point, right? do you just let, do you just let the danger exist and hope nothing happens?

Or you know, because you can't run interference 100% of the time either.

Diane: Well, one of the things I do is consistently with the primary caregiver, the spouse or the only daughter or the oldest daughter whoever it is, they are dismissed, ignored. They're told that, they are broken down by those around them, being judged, they're not doing things right, and everybody else is too far too busy and important to stop to take care of the parents.

And I also see the other side of that where at, when the family member dies, they're like vultures coming to take the things out of the house. And I can't tell you how many s- caregivers, family caregivers that provided care for years now are left homeless or with very little money and in poor health.

So one of the things I do is I encourage every caregiver to create a family caregiver contract. And this way, because caregivers are terrible at setting boundaries.

And, so I encourage, it's called a personal care agreement, family caregiver contract, but I have it so that you decide what you can do.

And I have 101 questions you should ask, because you don't know if the family that you're taking, the person you're gonna take care of is gonna become incontinent. You don't know if they're going to need personal care that you're not gonna be, feel comfortable providing. You don't know if they're going to become abusive or sexually inappropriate.

There are so many things that you don't know. they may develop wounds that you're expected to provide, take care of, and you can't. You, it's not what you can't want to do, it's not that you're capable of doing. That stuff is being forced on the family caregiver. So you have to put a family caregiver contract in place.

And because so many caregivers leave their jobs

Rachel: yes ...

Diane: if the family has money, or they even have a home, I suggest that you take payment for your services. I know people think that's terrible. I don't. it's absolutely necessary. Nobody's, putting into your Social Security, nobody's providing, gonna take care of you when you get sick.

So that is one of the first things I do, is encourage a family caregiver contract. The other thing I am suggesting is you develop a caregiver relief support group and you expect family members to help. Now, here's the caveat, because they don't wanna help.

Rachel: Right.

Diane: But they, what I say is if you cannot physically support, do research, or take care of certain things, or give me a regular a break on a regular basis

Rachel: Yeah

Diane: because if you look at this as a job, you should have vacation, you should have time to be able to take care of your own needs and get two days a week off. Okay, I see where this, nobody wants to do this if they're a caregiver. But every family member that is involved and is not willing to help in any way, they should be financially supporting you so that you can have outside help come in to give you relief.

So I'm being very firm about that, and we need to be now because it's not good for the family caregiver. And, they need to take accountability for what the, their part in being part of a family member. And we've got away from community. we know, if you were part of a community when you grew up, you didn't think anything of helping an elderly person.

I spent a summer In my neighborhood, going down the street a few houses down and sitting with, this little old lady. She was so cute, and I was just 14 or 15. I sat and spend the day with her, made her lunch, we watched TV, and we talked all day while her family members worked. And, They paid me, you know as a babysitter, I don't remember, but I didn't mind doing it because I felt like I've always liked the elderly, and I had a great grandma. My, my grandma was wonderful. I had a good relationship. But there are things now that we do, we have to in order for us to sustain caregiving in the way that it needs to be done, and maintain the dignity of the person we're providing care for, is people are going to have to step up to the plate.

They need to provide transportation. You need someone to provide practical assistance, not hands-on. You can pay for hands-on, but the practical assistance is, "Hey, you do Dad's yard, then. Let's get the yard cut."

Rachel: Yeah.

Diane: Make sure the dog gets to the walked every day, or, gets to the vet. There's all kinds of things.

Make a meal for us. there are things that people can do to help, and they don't, and we need to turn that around.

Rachel: I agree wholeheartedly, and I think, too, one of the things that I was constantly reminded of is, Rachel, you're the leader of the expedition, and if you go down, the whole expedition goes down.

Diane: Yes.

Rachel: And I think too many times, if it's a woman heading the expedition, we of course, as you said earlier, we're totally capable.

Diane: Yeah.

Rachel: But that doesn't mean that we've got the capacity

Diane: Yes

Rachel: and that we, that's the, and that's the best thing we should do. And I'm fearful for my, I'm fearful for my girlfriend because I just of course she loves her parents, but

Diane: Yeah

Rachel: I'm looking at this going, "Wait a second." and my brother and I have an agreement. I think I told you, my parents live in Melbourne, Australia.

Diane: Yes.

Rachel: And, there are four of us in the family, but my brother and I have an agreement, and he knows that if something happens, which it did two years ago, my dad took a fall, he gave me five days.

I got everything together, and I got myself over there, and I was there for five weeks. And what I found, Diane, my dad was in the hospital getting his hip fixed, doing his rehab. It was my mother that needed the care.

It was my mother who needed me to be there to be with her. He was fine in the hospital getting what he needed.

Diane: Yes.

Rachel: But she was the one, she was in worse shape than he was.

Diane: Yes, yeah. I've seen that many times. Because when they're taking care of each other you know, they neglect themselves. And of course women usually baby their husbands. They at least our generation did, I'm sorry for him

Yes.

Rachel: no, it's true. But it's

Diane: I'm 73.

Rachel: Yeah. No, it's absolutely. When they're 88. So- Yeah ... I totally get it. And now my brother has said, "I'm not gonna put them in a home." And I'm like, okay, but the thing

Diane: That's a bad thing to say.

Rachel: It is.

I think

Diane: Yeah

Rachel: and I think we've got this idea too that all homes are bad, and I don't know where that came from. Well, I do, but I don't think it's necessarily true. Now, expensive, that might be true for everybody.

Diane: That's very true. And I can tell you, I've been, I've worked in long-term care.

I've been a regional manager over, two national or international home, nursing home companies, and there are good and there are bad nursing homes. But the difference between a good and a bad one is a good one you are able to go in and you tell them what's wrong, what you need, and you always have to be in, a presence in their life.

You just don't put them in a home and say, "See you later." and that's the thing, you have to stay on top. And one of the things, again, I tell people is we are in, it's a global crisis

Rachel: Yes

Diane: where there's not enough seniors, or there's not enough youth to take care of our seniors. So I will tell you that, it's not realistic to say, I will never put you in a nursing home, because you don't know what you're agreeing to

Rachel: I, yeah, I think a- and to your point, I'm just like, and I had to get, I have, because I don't live there I have to defer, but my brother knows too that I will get there as soon as I can. We've got two other siblings, they're out. They're not available, they're not a- that's so fine. Yeah.

Diane: Yeah.

Rachel: So but it is interesting to me how, you're right, we say these things, and I was able to.

I mean, my husband and we talked about a lot of ALS patients, 85% of them get a feeding tube, but less than 10% do a trach. And the, and let me tell you, once you get a trach, you know the level of care

Diane: Yeah

Rachel: changes dramatically. Dramatically.

Diane: Yeah.

Rachel: And for what we thought it would add

Diane: Yeah

Rachel: it wasn't a fair exchange. And so we did the feeding tube. we didn't do the trach though, and when you're talking about care, yeah, that's a game changer.

Diane: Well, and I will tell you, a feeding tube is not applicable in a lot of people that have them put in, and I want people to know that you go through a normal death and dying process.

Your body consist declines, and when you're unable to swallow and you're drooling, that's a sign your system is starting to shut down. And I know, especially it's hard when you're dealing with somebody so young that you would put a feeding tube in. But I've seen, people as they get old, it, there's so many issues with a feeding tube that can occur that I tell people, you really need to look at what the options are because your person, your family member is not going to die of starvation.

Your system shuts down in a very natural and graceful way, and, you are not going to, kill them by not feeding them, and that's really hard. Especially, hey, I lived, had an Italian husband, Lord have mercy, mangia all the time, If that person didn't eat, the world came to an end.

And even with our animals, our greyhounds. it's just, I know people have different feelings about cultures, but even the feeding tube, I think it takes, you really have to look at all the issues that, can happen and occur with the feeding tube that is interfering with the natural death and dying process.

Because

Rachel: I agree.

Diane: Yeah.

Rachel: I agree. And I will tell you too, Diane, there was a term that was thrown out at me- it was the day that John died. Of course, I didn't know he was gonna die that day.

Diane: Yeah.

Rachel: But the hospice nurse came in and said to me, "Okay, John is actively dying.

He's in the-"and I was like "What is that?" I'd never heard of it.

Diane: Yeah. Yeah.

Rachel: I was like... and I'm sitting here going, "What is that? Is he gonna like, is something gonna blow up? Is he gonna blow out? What's gonna..." Yeah. Yeah. What does that mean?

Diane: Yeah.

Rachel: And so Jim, the nurse, explained it to me, and within two hours John was gone.

Diane: Yeah.

Rachel: and yet to your point, And then the whole conversation about hospice. Yes. We could probably spend another hour

Diane: Yeah

Rachel: on how to utilize hospice, and what hospice offers the caregiver. How hospice can, can support them.

Diane: Yeah.

Rachel: And why are people so hesitant to do that, Diane?

Diane: Well, there are Facebook pages that say, "Hospice is killing my loved one."

Rachel: Oh, gee.

Diane: Which makes no sense, because they would put themselves out of business.

Rachel: Yeah.

Diane: Yeah. It's just, it's not for me, I see hospice as a way to be in control of what you want up until the moment of your last breath.

And I love, I really like hospice. I love the benefits of it. And, they do have follow-up care for you up to 18 months after with bereavement counseling if you need it. And,so I'm all for hospice. And one of the things that I have a hard time with is people, doctors, because of financial reimbursement, this is always follow the money

Rachel: Yeah

Diane: they don't want to refer to hospice early enough because they are, their chunk of money will go away that

Rachel: Well, I will tell you that John's hospice orders were written in May.

He died in September.

Diane: Yeah. And that was beautiful. That was beautiful.

Rachel: Yeah. and maybe, you know,

And this particular doctor, I mean, it was very hard to hear, right? John's not gonna make it through the end of the year. He knew that.

Diane: Yeah.

Rachel: He didn't know how long. And of course, my husband thought hospice was a morphine drip in a hospital bed over in a corner somewhere. Oh, God bless him.

Diane: Yeah. Okay.

Rachel: but he was able to pass peacefully at home, which I'm ever so grateful for. But I, yeah, Diane, I, there's so much wrapped into this.

Diane: Yes.

Rachel: And the thing is that I wish people would start talking about it before they got into the thick of it, right? because by the time

Diane: Well, we try to encourage that.

Rachel: yes. Yeah. Yeah. 'Cause by the time you get into it, you can't make good decisions when you're running at an emotional peak, right? Yeah. It's just not, it's not the best way to operate.

Diane: Decisions made upon emotions are poor decision. They lack all logic, and, it's sad. So yeah. Rachel, you wore red to your husband's celebration of life.

Yes. I love it. What did that symbolize, and what message do you want widows and caregivers to take from your story?

Rachel: I do believe that life and death are worth celebrating, and I do believe it's one of our biggest privileges is to help somebody end well. I do, too. And if you have the ability to honor their wishes, if they're of sound mind when they make requests, if you can honor those wishes as best you can, and sometimes even if you can't but you know in your heart you did everything you could, I think that is one of the greatest gifts that you will ever get.

And I know that it is exhausting, and I know that it can be thankless, but it is also your greatest act of love and service

Diane: Yeah

Rachel: to another human being. So I want to encourage you wherever you may be in that journey. And I also, when it comes time to celebrate that life well-lived, that's what you will focus on, is what they brought into this world and the legacy that they have left with individuals within the family, within the community, within their friend group, and focus on that and let that be what you are celebrating rather than, the way in which this person died.

Although, a good death, there is something to be said for that, many lessons to be learned. But I just want to, lend you my confidence and tell you that this is not wasted. Whatever the experience is, it is not wasted. But information, I know when you feel like everything is out of control, information is power.

Yeah. So get informed.

Diane: I love that, and I want you to know I'm from a big Irish family. we always celebrated life when somebody died, and we were I was always surprised when someone was go "How awful are you? why aren't you feeling sad?" h- hell, I'm sorry. I'm sorry. Yeah.

I, It's not that

Rachel: I haven't felt, yeah. yeah. It's not that you haven't felt sad. Yeah. Yes.

Diane: Yes. So, Rachel, I really appreciate your time, and I hope we'll do this again. I want to do all the trilogy with you. I would love that

Rachel: Okay

Diane: because you have so much experience and knowledge that is so important for us to share to, for the future caregivers out there.

I really appreciate that, so thank you so much.

Rachel: Diane, thank you, and the work that you're doing is so necessary and so needed, and I just pray that your platform continues to grow and that people will continue to have these conversations well before, before

Diane: Yeah

Rachel: they need them. Yeah.

But the, it's not a one-time conversation. You have to keep coming back to it again and again

Diane: Absolutely

Rachel: and again.

Diane: Yes. Yeah. To my family caregivers out there, you are the most important part of the caregiving equation. Without you, it all falls apart. So please learn to be gentle with yourself. Practice self-care every day because you are worth it.