How To Be Equipped for The Unexpected Crisis as a Dementia Caregiver
What do you do when your world changes in the blink of an eye?
In Episode 240, we hear a deeply personal story—one that many caregivers quietly fear but few feel prepared for. After months of navigating medical decisions, doctor visits, and emotional stress, the host’s mother passed away suddenly during what was supposed to be a routine procedure.
But this episode isn’t just about loss. It’s about preparation, peace, and faith—even when everything falls apart.
Prepared in Every Way
One of the most powerful lessons from this story is the importance of preparation. Legally. Emotionally. Spiritually.
Because the paperwork had already been completed—and decisions about resuscitation and feeding had been made in advance—there was no panic. There was only clarity.
💬 “It wasn’t my decision—I was simply honoring her decision.”
Having a healthcare power of attorney in place, knowing your loved one’s wishes, and rehearsing what you would do in a crisis are acts of love, not fear.
The Blessing of an Easy Passing
Though her mother’s condition was complex and progressively worsening, her final moments were peaceful. She passed away under anesthesia, without pain, in a dignified way.
For caregivers, it’s a painful reality that we can’t always prevent suffering—but we can pray for peace, and we can trust in God’s mercy when He answers.
💬 “My one prayer in those final months was that she would have an easy death. And God answered that prayer.”
You Are Not Meant to Do This Alone
Perhaps the most moving part of this story is the role of community.
During the crisis, members of the Christian caregiver group stepped in—not only to support with practical needs, but to pray, to comfort, and to help carry the emotional burden.
💬 “Christian caregiving was never meant to be done in isolation.”
This is your reminder to surround yourself with people who understand this journey. People who will walk with you when things are hard—and celebrate with you when you have peace.
Peace Isn’t the Absence of Pain—It’s God’s Presence in the Middle of It
If you’re caregiving for someone with dementia, the day may come when you have to say goodbye. But you don’t have to meet that moment unprepared or alone.
You can plan.
You can trust.
And when the time comes, you can rest in God’s providence—knowing you did everything you could, and that He is faithful through it all.
Join our monthly free workshop!
“How To Immediately Reduce Dementia Caregiver Overwhelm and Stress In 3 Easy Steps”
Transcript
The Journey of Loss
[0:00] One moment, I was texting my daughter a photo of my mom in the waiting room. Twenty minutes later, I heard the overhead announcement of her coding during her routine procedure, and I knew she wasn’t going to make it. In today’s episode, I’m sharing something incredibly personal, the story of my mom’s unexpected passing and the peace that carried me through it. Not because it was easy, but because we had prepared legally.
[0:32] Emotionally, and spiritually. But I want to be honest about something else that helped. I wasn’t alone. The caregivers I support in my private community, the ones who I walk the same path with weekly, they are the ones who are gently coaching me through it in today’s coaching style episode. Their prayers, their presence, and their wisdom reminded me that Christian caregiving is not meant to be in isolation. This episode isn’t about grief. It is about hope, readiness, and how to be equipped for the moment when the inevitable crisis comes.
Support and Community in Grief
[1:13] Because caregiving with clarity doesn’t happen by accident. It happens by design. Hey, Christian Care Companion, Welcome to Dementia Caregiver Support for Christians.
[1:24] The podcast where I show Bible-believing Christians that God is a God of order and that there is order to dementia, that the way we think about caregiving will set the tone of your caregiving journey, and that because we are made in the image of God, who is in an internal relationship, we need to focus on our relationships in caregiving. And not just the tasks. If you are a Christian spouse, the adult child, or a family member of a person living with dementia and want to have more clarity.
[2:02] Less stress, and provide better care, this podcast is for you. Here we provide you with practical solutions, hope, and encouragement for your caregiving journey through a biblical lens, keeping an eye on eternity. Have you ever attended one of our free monthly workshops yet? This coming Saturday, April 12th at 12 p.m. Eastern is your opportunity to walk away with three easy steps to reduce caregiver stress and overwhelm. You can register for our next free monthly workshop at thinkdifferentdementia.com forward slash WSL or go to our website thinkdifferentdementia.com and look under free resources or you can click the link in the show notes below.
[2:56] If you are struggling as a family caregiver and you’re ready for a little bit more support, hop on a Care Companion success call with me. We’ll take 20 minutes where you will be able to talk to me, gain some clarity about your very next step that you need to take in this journey, as well as have a conversation about whether or not it makes sense for both you and for me for us to work together to help you through your dementia caregiving journey. Now, I’d love for you to listen to today’s episode, share it with somebody that you love that is walking through this journey with you, and listen to my coaching community come alongside me as I share my experience with them right after my mom passed away. So I hope you enjoy today’s episode.
A Personal Story
[3:53] I’m super glad you guys are here. I’m very glad you guys are here. I’ve missed everybody. It’s been, like I said, it’s been, you know, quite a little bit of a rocky road for the past two weeks.
[4:04] So because I haven’t been here, maybe other people know, I don’t know. So what happened with your mom? Because I’m very happy to share. That’s why I took two weeks off so that I could kind of get my emotions under control before, you know, kind of working through it. Big public thank you goes to Angela.
[4:27] She was literally my lifesaver the day this all happened. So my mom had been diagnosed with an esophageal stricture, let’s see, at the beginning of January this year. She’d been losing weight for about a year. She was starting to have trouble swallowing. But when I would ask her if she wanted to go to the doctor so that we could have a scope done to see what was happening, she told me no, she told me no, she told me no. And I had made a decision a long time before that. I did not want to bully my mom into doing something that she did not want to do. But then what happened is finally around November last year, she was really very limited with what she could eat. And so she agreed to go to have an EGD or an upper endoscopy done to see what was going on. And from November to January, it took two full months before we could actually get her in to see the doctor. And when we got her in to have the first EGD to go in and see what was going on to scope it, what they found was a severe, severe stricture to the point that.
[5:43] Top part of it, and I know you guys are not metric, but the top part of it was about a quarter of an inch wide. And the bottom part of it, like a funnel, was approximately four spaghetti straws wide. Okay. So it looked like a funnel, looked like a funnel where the top part was seven millimeters and the bottom part was four millimeters. And the length of it was almost an inch and a half, almost two inches.
[6:12] So literally think a funnel. So any liquid going in would sit there until it was able to go through. They couldn’t do anything with the first EGD because he didn’t have a scope small enough, which meant we had to go for another test. When they did the test, it’s called an esophagram or a barium swallow study. What they found is they do an x-ray of a person swallowing a sip of something with barium in so they can see it go through and what they found was one sip of water took over two minutes to clear that funnel so nothing was going in and so it became a little bit more of a heightened emergency situation because she couldn’t eat and so she was losing two to three pounds a week so the first one they found it the second one they really couldn’t do anything substantial when they went in so they they were doing them every two weeks what they did after the first one is they took it from a funnel to a u so the top part was eight millimeters and the bottom part was still four millimeters and anything going on to it just sat there until
Hospital Visits and Decisions
[7:26] it could go through that was the second egd.
[7:29] That would have been beginning of February. Then on the 17th of February, we went for a third EGD. And that was the one, Vicki, where she stayed in the hospital overnight. So she was admitted to the hospital. That was a Monday. They did the EGD. And I was sitting the wall to the recovery room and the waiting room was adjoining. And I was literally sitting where I could hear her in the recovery room coughing as she was waking up. And so I knew they were going to come get me. So I got up and they brought me in and she was super, super confused.
[8:05] Couldn’t speak English at all. Just went back to Afrikaans. But she was talking to me. And then the next second she was just she was out. And so they called what they what they call a rapid response, which is the step below a code blue. And so I’m the one there like mom, mom, wake up. She wasn’t responding. So, you know, they escalated it. And because I’m a therapist, I don’t freak out very easily. So I kind of planted myself up against the wall, but she was not responding at all. And then she started to respond. And I think that was the dress rehearsal. I think the same thing happened on that day that happened two weeks later. By the providence of God, the 18th is my sister’s birthday. And that was the 17th. So we were in the hospital overnight. It was kind of a fun conversation. I called her on the 17th. I’m like, hey, and she picked up. She’s like, I’m in a museum with my husband for my birthday. And I’m like, your mom’s in the hospital. You can decide if you want to talk to me or not. So she talked to me. And then my mom stayed overnight. They thought she had had a stroke. So they were ruling out a stroke. But she came to. She was weak, but she was herself, right? And so we went home on Tuesday afternoon, which is why I canceled on the 17th, because she was coming out of the hospital at that time. and the.
[9:26] I mean, on the 18th. The 20th, my daughter from Tulsa arrived for a long weekend. And the 22nd is my dad’s birthday. And the 23rd, my daughter from Tennessee came for the day. And we had a wonderful visit with my mom. And Tuesday, the 25th, Estelle, I took her to the airport and did all my daily stuff. And by three o’clock that I had literally just left my mom and dad’s house when they called me and said they want to schedule my mom for the next EGD for Thursday because she couldn’t eat anything. Nothing was going in. And I turned around, went home, took her medicine, her blood thinners out of the box so that they could do the procedure. Thursday morning, picked her up. Her procedure was scheduled for 10.15. We had to be there at 8.30 in the morning, something like that. We were sitting in the waiting room. They were late. and my daughter was taking her board exams. She sent us, I passed. I turned and took a photo of my mom in the waiting area and I sent my daughter and said, hey, granny says congratulations.
[10:36] About 20 minutes later, they took us in, parked the wheelchair. My mom walked into the bathroom, went to the restroom, got on the bed. I helped her undress because she, not because I needed to, but for convenience because they’re trying to get a procedure done. and she lay down on the bed. The doctor came in, the anesthesiologist. And this was really funny because his name was Dr. Frisky. And I was very convinced my mom was going to say something inappropriate and she didn’t.
[11:09] But then she said to him, I kind of thinking back, I’m like, I know she wasn’t feeling super well. But anyway, so I said, well, you got teased a lot in school. And he’s like, yes, I did. But my mom said, you are the eighth, dwarf. You know, sneaky, dopey, snoozy, all of that. She’s like, frisky, you’re the eighth dwarf. And they got, you know, they got her ready for the procedure.
The Day Everything Changed
[11:33] They took her for the procedure. I went and sat in the waiting room. And a few minutes later, as they started the procedure, she coded. You have to rescind the code in order to have an outpatient procedure. I’m not entirely sure what the exact chain of events at that moment was related to, you know, I’m pretty sure I probably let my husband know first, but Angela was a very close second. And I text her, I said, they just coded my mom and her text was, do I need to come? And then I’m like, no, you need to go get my dad and Louie. So she drove from her house, which is about a half hour from me, picked up my husband, picked up my dad. And by the time they got to the hospital, they got there about 1.30. I already knew that she wasn’t going to make it, and so I’d taken care of all of the questions to the doctor. And when they did that, when they came in, the doctor told my dad, there’s nothing that they can do, so we had to have her extubated. And then it was, she passed away at 2.12 on that Thursday. And Angela stayed there, super grateful.
[12:35] She took my dad back home, then she came back, made sure that I had food because I hadn’t eaten. So she took really good care of me. And for that, I’m going to be eternally grateful. That’s kind of what happened that day. So yeah, it was a blessing in the sense of the alternative was going to be worse because she couldn’t eat anything. Nothing was going in. And so what I believe to have happened is that her congestive heart failure, one of the ways they manage congestive heart failure is in fluid restriction. You know, you don’t want to have too much fluid because then your heart can’t work. But it’s hard to determine somebody is fluid overloaded if they’re losing weight hand over fist. And so I think that her heart just failed. And for my mom, to be fair, this was probably the best and easiest death for her. Not so easy for me, not so easy for my husband and my dad. But for my mom, it was a very, very easy way to pass. She was an extremely dignified woman. And so she was in the hospital. She had a catheter.
[13:39] None of the other things that happened as somebody passed actually happened
Reflection on Her Passing
[13:43] with her because she was in a very controlled environment. She went to sleep with the anesthesia and she never woke up again. So for her i’m extremely grateful i had one prayer in this whole time probably the last three to four months was she’s had a really hard life give her give her an easy death and that is what she had that is what happened so you guys are welcome to ask me questions or whatever you want to contribute and then we can work on all you guys and see where we’re at well thank you for sharing and taking us on the journey, feel every bit of your step. So, you know, very empathetic for your loss. I was curious what they were going to be doing at each of those stages of the, how did they get it more open and what did they expect? Why you were doing that each time? What was the prognosis?
[14:34] What he had said, what the gastroenterologist had shared with me that his hope was with the procedure on that specific day was to they finally got the bottom section open so the whole thing they put a balloon in and they they they blow it up or stretch yep they stretch it they literally stretch it so so think like a stent in your heart you know when they go in and they blow that open it’s it’s similar so they put in a probe and then they open it up they had to use a neonatal probe to go through the bottom section of it that is how small it was but with the third one when she, I call it her dress rehearsal, two weeks before that, they had opened it up to one centimeter, which is approximately the diameter of a straw. And if you think about a straw with the bendy section, the section, the length of it was about the top bendy part. So it was all the way open, like that much, that long, but the width of the straw. And so fluid would still just kind a dam up. So the goal with the EGD the day she passed away was to get it to 13 millimeters, which would have opened it up enough for it to clear faster. And then the hope after that was one more EGD to maybe get it to like 15 or 16 millimeters.
[15:55] A normal esophagus is approximately three centimeters, which is approximately a little over an inch and an eighth. They were trying to get it about an inch. They were trying to get it about three quarters of an inch wide. And if they could have done that, then she could have eaten soft food. And so that was the purpose behind it. But it was very hard on her. We were trying, we were talking about trying to get her supplemental nutrition.
[16:24] And to be honest, you know, I was bullying her a little bit to try to get her to allow us to put in what’s called TPN, which is a type of a nutrition through the vein. So it’s not a permanent feeding tube. So I was trying to get her TPN just to get her strong enough for these procedures, but she didn’t want to have that. And then a couple of days after she passed away, I had printed out her healthcare power of attorney, which for everything she had given me the discretionary power. So that in South Carolina, you have do everything, do nothing, or give somebody the discretionary power to make the decision for you. And for everything I had a discretionary power to do to make the decision on her behalf. But for the tube feeding one, she had said, no, I don’t want any tube feeding. I don’t want any type of artificial way of feeding. And when I actually read through it again, it included TPN. She really did not want it. She never wanted it at all. And so I’m glad that we were able to honor her wishes.
Honoring Wishes
[17:37] You did great. For anybody, you know, because this section today, I’m going to pull out and use as a podcast episode For anybody who does listen to this later on as a podcast episode, know that it gives you so much peace knowing that the person has made that decision ahead of time and it is not ultimately your decision. It is you honoring their decision. Wishes. And it was the best thing that I could have done because I had practiced that scenario, not that specific scenario, but similar scenarios. If something happened at home, you know, whatever, I had trained myself to say, no CPR, no CPR, let her go. And so when it happened, I didn’t even hesitate. So, you know, when you’re in this position and you have that document, practice to yourself. If this happens, what would you do? And then you just go into automatic and do it. Don’t think about it. Just do what the person wanted.
[18:41] Go ahead, Vicki. I just said, thank you, Lizette. And it brought to mind the post that we have, the orders to DNR and the steps that you talked about. And we just went through an episode where we thought we had all of that in line. And then when Bob went in the hospital, the doctor told me that I don’t have a legitimate one on file because the copy they had on hand did not have either his signature or my signature. It only had the doctor’s signature. So that’s another thing that’s important to have a fully executed post or directive on file. And it also reminds me because Bob and I just finished our appointment at the cardiologist to decide whether or not to to re-implant his defibrillator because it has run out of batteries. And in the room, he and I and the doctor talked about it. And the doctor and I were doing most of the talking. And then ultimately, I asked Bob, you know, I told him in more brief terms what we were talking about. And he said he didn’t want it. So we made that decision too. So that gives me peace because it was a very difficult decision to, you know, make that kind of determination.
[19:55] Absolutely, Vicky, I understand for sure. But take peace in knowing that I do think he understands well enough still to know that he doesn’t want it. Like my mom, yes, she did have cognitive changes, but she still was very with it enough to make this decision for herself. Okay, Angela, you next? I was just going to ask, now that it’s been two weeks, how are you doing with everything, like all the other stuff that has to happen,
Finding Peace in Grief
[20:23] and how’s your dad doing? I’m doing very well. I have a very, very deep faith in God’s providence. And because of my faith in God’s providence, yes, I’m sad. Like, I am sad. And it comes in, I don’t even want to say waves. It comes in moments. But for the most part, like, I have tremendous peace.
[20:49] Of tremendous, tremendous peace. And I mean, I miss my mom for sure, but I’m also enjoying looking at photos and, you know, I’m, I’m eternally grateful. Angela took photos for me because she’s been there, you know, she’s been there and they were at home, but because I had trained you guys to take photos, she had her camera, she looked at me, she held it up and I said yes. And so she took photos for me while we were with my mom in the hospital, because I would not have been able to do that. But I’m truly, I’m really, I’m fine. Like, I have moments when I get a little teary-eyed, but for the most part, I know that I did everything I could. I know that God is good and that this too was his will for her and yeah my dad on the other hand is a little different we will leave it at that that works anybody else have anything else to add to to my healing process before we hand it over to Vicki and Tommy to talk about their processes.
[22:11] Lizette, I just want to give you my condolences. I know the loss of my dad and the loss of your mother kind of happened very close. I can only imagine how that process was for you. And still yet, you thought of us throughout the entire time. So I just want to tell you thank you and offer my support in any way that I can. And thank you all as well who extended the cards of condolences and just, you know, your prayers. But Lizette, I’m here for you.
[22:47] Thank you, for sure. Well, I was extremely grateful for this community. It was the hardest decision, but the right decision to just pause for two weeks. It gave me the bandwidth to be able to come back and not feel like I was going to fall apart and not be able to support other people. And I was able to put my house back together again, be able to just take a little bit a time. And it’s interesting. I know and I understand people process things differently, but almost immediately my automatic response was, I need to move my house around. It needs to look different. Like this was a big change. Now the house needs to look different. So it’s not the same. So it’s like I can move forward. And that’s really what I’ve been doing is like, I’ve been spring cleaning. I’ve been spring cleaning. I’ve had to clean out my mom’s closet. So I cleaned out her closet and now I’m cleaning out my closets. I’m like, okay, let’s just do some spring cleaning. Let’s just get it done.
Moving Forward and Healing
[23:50] So I know that you have found benefit from today’s episode. And if so, I ask you, please share this episode with one other person. It means the world to me to grow this podcast because this is my ministry and my help to you as my audience and my desire is to get this message into the hands of people who need to hear the gospel. So as I end or try to end all of my episodes, may the Lord bless you and keep you, and I hope to see you soon, and I’ll talk to you guys soon.
