How to Make Hard Medical Decisions in Dementia Care
What happens when your medical knowledge says one thing… but your heart, your husband, and your faith point in a different direction?
In this episode, Lizette sits down with Anne, a physical therapist, wife, and Christian caregiver. Anne is navigating the heartbreaking changes in her husband Joel, who has a shunt, possible dementia, and a growing resistance to further medical testing.
Anne knows what tests might give more clarity. But Joel says he’s done.
She wants answers. But she also wants to respect his wishes.
And somewhere in the middle, guilt keeps whispering:
“Are you doing enough?”
This honest episode is for every Christian spouse caught between advocacy and submission, action and acceptance, love and guilt.
READ MORE: How to Step Into Dementia Caregiving When You Didn’t Choose Caregiving
When Medical Expertise Meets Personal Faith
Anne isn’t new to brain injuries. As a physical therapist, she’s worked with stroke survivors, neurosurgical patients, and people with shunts for decades. But now, her own husband is the patient. And that changes everything.
She’s noticing his memory lapses. His trouble walking. His behavioral shifts.
But he refuses further MRIs or CT scans.
And now she’s left wondering:
🧠 Is it his dementia?
🧠 Is it the shunt?
🧠 Will I regret not pushing harder?
Honor Their Wishes—And Still Be an Advocate
This reminds Anne—and all of us—that it’s possible to respect your loved one’s decisions without abandoning your role as a caregiver or spouse.
👉 Ask them clearly: “Do you want me to advocate for you—no matter what?”
👉 Clarify their boundaries while they’re still able to make decisions.
👉 Honor their voice, and trust God with the rest.
“You can advocate without guilt when you know you’re honoring what they wanted—not just what you feared.”
Submission Isn’t Silence—It’s Strength
As a Christian wife, Anne struggles with the word “submission.”
What does it mean to submit in dementia caregiving?
Submission doesn’t mean inaction. It means honoring your spouse’s agency.
It means recognizing when to speak—and when to step back in trust.
It means letting love lead, not fear.
Have the Hard Conversations—Before It’s Too Late
This episode encourages caregivers to start the conversations we often avoid:
✔️ What kind of medical interventions do they want?
✔️ When would they want hospice care?
✔️ What’s more important—clarity or peace?
Joel has said he’s done with testing. He wants to be left alone. And now, Anne can let go of the guilt because she has clarity.
Clarity Ends the Guilt Spiral
Guilt thrives in uncertainty. But clarity creates peace.
When you ask the hard questions early…
When you honor the answers…
When you trust God with what you can’t fix…
You release the weight that was never yours to carry.
🎧 Tune in to Episode 254 and hear Anne’s powerful story of love, faith, and letting go of guilt—while still being the caregiver her husband needs most.
Join our monthly free workshop!
“How To Immediately Reduce Dementia Caregiver Overwhelm and Stress In 3 Easy Steps”
Transcript
Introduction to Anne’s Journey
[0:00] If you have ever laid awake at night wondering, did I miss something, you’re not alone. In this episode, you’ll hear a real dementia caregiver, Anne, who is a physical therapist, a wife, and a believer who still found herself stuck in guilt.
[0:22] Second-guessing whether she had done enough. Even with years of experience in healthcare, she needed something more, biblical clarity and peace that no medical test can give you. Because when it’s your spouse, when the decisions fall to you, what you really want isn’t just answers. It’s the freedom to stop carrying what isn’t yours. Hey, Christian Care Companion. Welcome to Dementia Caregiver’s Support for Christians. The podcast where I teach Bible-believing Christians how to approach dementia care differently. Because we’re made in the image of God, our value does not fade with memory loss, and your journey is not random. It is by God’s design. This isn’t a medical model. It’s not about symptom management or burnout prevention only. It’s a relationship-centered, biblical approach that helps you care with purpose without losing your peace and hope. If you are ready to ask your own questions or if you want to listen in for the kind of help you did not know you needed.
[1:39] Join me this Thursday at our next Ask the Dementia Coach session. It is May 29th at 6 p.m. Eastern. You can register now at thinkdifferentdementia.com.
The Weight of Guilt
[1:52] Www.dementia.com forward slash ask and take one step closer to clarity. Now take a breath and let’s begin and listen to a dementia caregiver support in action episode where I talk to Anne who is a physical therapist.
[2:13] How are you, sweet Miss Anne? I’m so glad that you’re here. And I’m going to ask you the same questions. I know you a little bit better, but I’m still going to ask you the questions. Let’s say it’s six months from today and caregiving is easier. What does that look like for you? Not feeling guilty that I haven’t done enough and not being fearful that, again, it has to do with not doing enough and making sure that I’ve touched all the bases to make sure that there’s nothing else we could have done. Okay. Now I’m going to ask a little bit of a loaded question because I know a little bit about your situation. Are you referring to your mother-in-law or are you referring to your husband? I’m trying to keep them separate. Which is why I’m asking. Yes. I am going to say my husband. Okay. So not feeling guilty that you haven’t done enough for your husband. Right. Okay. And what would it take to achieve that? Well, you know this. So Joel has a shunt.
[3:12] And here’s the hard part. The Gleiss, when we needed the revisions, you know, I could tell something was wrong, but it wasn’t on my radar that, hey, the shunt might be malfunctioning. And so after 2021, there were, there’s been times when I’m like, okay, something’s going on. Let’s do a CT. And so we’d made some adjustments. And so the last two times, the shunt was working fine. And then we just went in and I asked him to adjust it to give him a little bit more cerebral spinal fluid because his brain was shifting. And so the thing is, is I feel like Joel is declining rather rapidly.
[3:50] And so now I’m like, well, I mean, we’re going to go see the neurosurgeon next Tuesday. Okay, so that’s a little bit of the medical background. Now, what would it take to achieve the goal for you not to feel guilty that
Navigating Medical Decisions
[4:06] you haven’t done enough? So maybe, you know, this is where I’m like, do I ask for another CT just to make sure that the most recent changes I’m seeing are not the shunt and the dementia? Can I ask a quick question? Sure. What would you regret more? Asking for the CT and nothing’s wrong or not asking for the CT and something was wrong? Well, I would regret it more if I didn’t ask. Okay. So in order for you to not feel guilty that you haven’t done enough for your husband, it would set your mind at ease to have enough CT. Right. And I know that Joel is opposed to that. And you know, the neurosurgeon has been a little bit because the thing is, is with his cavernous malformations, CTs can form them. But at this point, I’m not concerned about that because he’s had multiple CTs over the years and there’s been no more cavernous malformations formed.
[5:00] So let’s play this through just because you and I share a similar background. So we’re going to play this through. Right. If you have the CT and the CT shows that the shunt is functioning well, we have to assume that the changes are not related to the shunt. The shunt, correct. And, you know, the hydrocephalus.
[5:21] Right. So does he have normal pressure hydrocephalus? I mean, it’s not diagnosed per se, but he has a shunt, so it’s preventing any backup of… Right. He got the shunt because when he had his hemorrhagic bleed, it blocked off the aqueductive sylvis. So they had to put a shunt in to keep him alive. And then what happened is in about 2007, I mean, he basically had slit ventricles. And so when they put in the new shunt, they tried to make him normal where he didn’t respond well. And he cognitively responds very differently with just small changes. So that’s where it’s tricky. So in essence, we’re treating him like he has normal pressure hydrocephalus. Yeah. Because the shunt, the pressure, depending on whatever adjustments they make with the shunt, impact his cognition or not. So functionally, whether he has a diagnosis, functionally he is being managed like he has normal pressure hydrocephalus. Right. So it sounded to me from what you said that the last two times there was nothing wrong with the shunt. Correct. Right? Right. But you’re noticing all of these other changes.
[6:28] Yes. So would you regret it more to have the CT and nothing’s wrong? And then we know that we are likely dealing with a vascular type of a dementia? I would feel horrible if the shunt wasn’t working and he was building up and it was causing more brain damage. Because then I would feel like I should have caught it. That’s what happens. I understand that. Now, and I’m going to use me as an example here. I knew with my mom that something was going on with her swallow for a long time. But my mom had repetitively told me over months and years, years and years, I don’t want all sorts of, I don’t want to be coke and prodded and messed with.
[7:13] And I like literally every single time I took her to the doctor, we’d get in the car and she would say, I don’t have to come back again, do I? And I’m like, no, mom, we do. Right. Even to her GP, even to, you know, the podiatrist. And so by the time it was bad enough for my mom to want to have the EGD done, to see what was going on, it was too late. Right. It wasn’t the dricher in essence that caused her to pass away, but it contributed to it.
Conversations on End-of-Life Choices
[7:42] But at the same time, I walked away with no regrets. Because I allowed my mom to make the decision she wanted for her life. So what I’d consider you maybe thinking about talking to Joel about is truly his preferences. I know a little bit about your situation and your story, and you’ve been navigating his process for a very long time, and he has done exceptionally well.
[8:13] Having said that, he’s your husband and you know him well. What does Joel, if we were to be, and I’m not saying we are, at the latter stages of his life, what would he want to do? Does he want all of these tests? Does he want these tests at all costs or numbers of days more important to him than quality of days? Right. What? You know your husband. Yeah. Right. You know your husband and I know your heart. I can see your heart. You want the best for him. And because of your background as a PT and my background as an OT.
[8:51] We have so much advantage in this section of the world because we know what to do to both extend quality of life as well as quantity of life. We know what we can do to absolutely set him up for success. And that is what I did with my mom for as long as I could. And I honored her wishes. And I know that if I’d probably done stuff earlier, I know this here. I know. If I had bullied my mom in inverted commas, if I had bullied her earlier and said, we’re going, we’re going, we’re going, it probably could have had a different outcome. But what would that have done for my relationship with her? And you know what? The last several years and particularly the last several months of my mom’s life and my journey with her were sweet. She was sweet and she was thankful and she was happy. Yeah. She got what she had always wanted.
[9:54] Right. So I think in your particular situation, I think where I’d love for you to start is just sit with us a little, reflect on it and talk to Joel and really have some of these hard conversations. As we’re working through the Confident Caregiver Blueprint, some of this is going to come out. Okay. Right. But I know that we don’t like to thing about our spouse is dying.
[10:17] Right. I know that. There’s a 50-50 shot. He’s going before you. One of the two of us is dying. One of us is going to drive the other. The benefit we have, Anne, is that we know something is going on with Joel. Yeah. We can choose how we want to live until we die. And that’s a tough conversation. And those are hard things to think about. And it’s not something I’m suggesting you do quickly. It’s not something I’m suggesting you do lightly. But when that code blue came over that overhead thing, I already knew it was my mom and I already knew what to do. And right in that moment, and for this, I’m eternally grateful, I did not waver. I never wavered. And the reason I didn’t waver was because I practiced it in my head. I had thought it through. And so that’s what I’m encouraging you to do, to sit with him. There’s no rush, but it sounds like he’s still able to have these conversations. Yeah, you may not remember it, but he has insight into understanding what the shunt does and what he scans, all of those things. He understands that this has been a part of your journey for a long time. And then there should be no guilt. There should be no guilt if you have honored your husband, right?
[11:36] And we can take it even one step further. And the reason I want you to have these conversations with him now is because I believe that now, you know, you’ve mentioned a couple of times that you see him changing quickly. You need good clarity in your mind that you’ve asked these questions, that you’ve had these conversations. Because then you as a Christian wife can submit.
[12:03] Here’s the thing, right? You as a Christian wife can submit to his decision to not do these things, if that decides, without you feeling guilty that you didn’t do enough. And then when the time comes when he really cannot make those decisions anymore, you already know what to do. We have practiced it in our mind, the possibilities could be. And then you submit to his decision for his life as his spouse, and you’re honoring his wishes. Yeah, that makes sense. Does it make it easy? No.
Advocating for Clarity
[12:41] No, no. No, it doesn’t make it easy. But the Lord teaches us to submit to our husbands.
[12:47] And your husband is still able enough to have these conversations with you. And that should take away the guilt, the feeling of guilt that you haven’t done enough. Was that helpful? Yeah, it was really helpful. It was. Thank you. You’re welcome. So what’s one thing that you can do that’ll take you a little closer to achieving that goal? What’s one thing you can take from tonight? Well, from this conversation, when we go see the neurosurgeon, you know, I can have the conversation with Joel first because Joel’s not aware of his declining. And I can, you know, and the neurosurgeon the last time offered to do an MRI, which doesn’t carry the same effect. But I can just say, what I’d like to do is say, honey, I’m noticing some things. And I would like to, if you want to have some further testing and tell them, I just want to make sure that the shunt isn’t malfunctioning and causing these things. May or may not. What do you think about us asking the neurosurgeon? And then leave it up to Joel. I think there’s wisdom in that. And, you know, if there is more risk to the CT scan, is he more able to and willing to have an MRI? Right. That’s, yeah, that’s what I thought as you and I talked, we can, yeah.
[13:55] And what you could potentially propose to Joel is not to ask the neurologist for the CT scan, but to ask the neurologist for an MRI and tell the neurologist you just want clarity as a PT so that you know you’ve crossed your T’s and dotted your I’s and the most information you can. But if it’s showing changes and declines that are not related to the shunt, that you will be after that. Right. And in your experience with dementia, is MRI more helpful than a CT? An MRI is always more helpful than a CT. Okay. Because we haven’t had one of those in a while. See, I think the MRI will show you more what’s going on than a CT scan. Okay. The CT scan will show you more if there’s fluid. Right. Things like that, you know, blood and stuff like that. Right. But it’s not, and it’ll show, you know, atrophy and general stuff like that. But if you really want to know what’s going on, get the MRI. OK, because I think, yeah, his biggest concern is that a CT can cause. And so and that’s something that he has remembered. Right. And then I would just say to the neurologist, I would say, look, I recognize that this is more likely than not not the shunt. Right. My own peace of mind as a PT, as a health provider. As his wife.
[15:13] Yeah. I need to understand. No, I wouldn’t even go as his wife. Like I would go the health care card. Got it. As a professional, I understand the stuff. If I need to know, I need to understand what’s going on and I know the MRI is going to give me that information and then I will be able to know what I need to do next. Excellent. Okay. Very good. And they can say no. Right. And then, you know, they can say no. And then we just we deal with the fallout of the, you know, being hacked off at the health care system afterwards.
[15:44] Yeah. Okay. Very good. Well, he offered the last time. Okay. And if he’s offered, then I would get the MRI. Got it. Okay. Honestly, would get the MRI. And then you can look at the MRI report and then what the MRI will show is if there are other things going on. Got it. The reality of the matter is in Joel’s specific situation, everybody’s always going to be thinking of the thing that was there, right? There are other things that cause cognitive loss that are not dementia. Right. And an MRI will show that. So that’ll rule out a brain tumor. That’ll rule out things like MS and other stuff like that that can cause cognitive impairment. It’ll rule out whether he’s had another stroke that wasn’t evident. And if all of that stuff is, none of that is there, then by logical conclusion, we are probably dealing with some sort of a vascular type of dementia.
Finding Joel’s Preferences
[16:33] But let’s look what’s treatable first before we just let a diagnosis of vascular dementia. Right. Thank you. You’re welcome. Now I feel like I can advocate and then I won’t have guilt. Yes.
[16:46] But then you’re advocating in a way that’s consistent with his desires. Right. Because I will talk with him first. Right. Well, you know, he doesn’t want to see T-Scan. So we’re still advocating for him, but in a way that’s consistent with his desires. Right.
[17:01] Your goal is to find out some of the other stuff. Right. Just have conversations. And what’s more important to you? Do you want to, you know, if things were to change, would you want to live a lot longer? And it doesn’t matter, you know, that things are changing and you’re needing more help, or would you want to have better quality but go to the Lord earlier? What’s more important to you? And if he says, I want to go to the Lord earlier, does that mean you don’t get the testing? No. What that means is we’re starting to find out what Joel’s preferences are for end of life. Got it. Okay. And I’m not saying that his end of life is today. Right. But what I’m saying is that we know in your particular situation that with all of his medical comorbidities and things that have happened, he likely isn’t going to live to be 90 years old. Right. So what does, what lights his fire? What does he want to, you know, what does he want? Would he want a feeding tube? Would he not want a feeding tube? Right. You know, would he want whatever? Like, you know, we need to start having
Preparing for Difficult Discussions
[18:08] those conversations. And that goes both ways. Yeah. You need to be thinking and you won’t be able to be telling Joel necessarily what your stuff is, but you need to share with your kids. Right. Doing those conversations with them. Okay. Okay. Yeah. Thank you. It’s good seeing you. I’m so glad you were here. You make me happy. Me too. Oh, well, thank you. Ditto.
[18:28] Well, thank you so much. All right, guys. Love you and I’ll see you guys soon. Thank you. You’re welcome. Bye.
Community and Ongoing Support
[18:35] People who are really benefiting from the community are the people who joined earlier on, before they need it, and that have been active and are participating in the community because then they already know what questions to ask and they have a place to come and they’re not constantly wondering, what do I need to do? How do I need to do it? So people listening are interested in tapping into or learning about the community. I’d invite you to just go to the website, thinkdifferentdementia.com. There’s a link for you to schedule a 20-minute call. There’s no pressure. I’ll serve you regardless of whether you join the community or not. But it is a way for you to take this relationship a little deeper, a little bit more hands-on support, because really the research also shows its longitudinal support over time. Yeah, for sure. I would highly recommend Lizette. She’s awesome. I appreciate that endorsement. You are well. Thank you, everybody, for listening today. And as I try to remember, I try to remember, I don’t always remember, may the Lord bless you and keep you and come back and listen some more. I’m hoping to do more of these coaching style episodes. So come back in and check us out. And thank you for being here today.
