How to Cope With Grief As A Dementia Caregiver While Your Loved One Is Still Alive
He Was Still Visiting, But Felt Lost Inside
Larry still visited his wife almost every day. He still prayed over her. Sat by her bedside. Played her favorite hymns. But somewhere deep down, he started to ask, Am I even a caregiver anymore? His wife had vascular dementia, and after years of round-the-clock care at home, she now lived in a small care facility, fully bedridden and non-verbal. Larry was no longer managing medications or middle-of-the-night emergencies. And yet, the ache hadn’t gone away. If anything, it had grown heavier.
This is the in-between space so many caregivers stumble into—a season where your loved one is physically present but relationally fading. It feels like grief, but no one has died. It looks like caregiving, but you no longer feel needed in the same way. And it can be one of the most disorienting parts of the dementia journey.
Why This Grief Feels So Confusing
Dementia caregivers often face what clinicians call “anticipatory grief” — mourning the gradual loss of a loved one’s personality, memory, and shared connection. But here’s the hard truth: anticipatory grief isn’t the same as true bereavement. It doesn’t bring the closure that comes with a funeral. And for Christian caregivers, it can stir up even deeper spiritual questions:
- Is it wrong to feel this sad if they’re still here?
- Am I being unfaithful by preparing myself emotionally?
- Why does it feel like I’ve already lost them?
God is not a God of confusion (1 Corinthians 14:33). Recognizing that this season is both a loss and a calling can bring clarity to what feels emotionally foggy.
You’re Still a Caregiver—Even If It Looks Different Now
Just because the tasks have changed doesn’t mean your role has ended. Caregiving is not measured by hours at the bedside or tasks completed. It is defined by presence, faithfulness, and love in action.
Larry didn’t think of himself as a caregiver anymore. But he was still praying for his wife. He was still showing up. And those relational touchpoints still mattered. Even if she no longer recognized him, she felt his gentleness. She knew she was safe. That’s what Christian caregiving looks like at its deepest level—a commitment to honor and love, even when the other person can’t respond.
Therapeutic Truth-Telling™: Facing the Pain with Biblical Clarity
One of the most powerful tools Larry discovered was learning to tell himself the truth—gently, biblically, and repeatedly. Not minimizing. Not dramatizing. But anchoring his emotions in what was still true:
- “She’s still here, even if she can’t respond.”
- “God still sees my care, even if no one else does.”
- “This isn’t the end of her story.”
Therapeutic Truth-Telling™ isn’t about pushing away grief. It’s about giving grief a healthy place to land—so it doesn’t grow into despair. It’s the difference between spiraling in uncertainty and standing on God’s promises, even when the emotions are raw.
Start With Scripture, Not Guilt
Larry shared that the only thing that truly steadied him was meditating on Scripture daily. “Day by day by day,” he said. And that’s often the only way we can live this kind of long goodbye—one day at a time, anchored in God’s Word.
He loved 1 Thessalonians 5:18: “Give thanks in all circumstances.” Not for all things. But in them. Gratitude became his way through the fog. Not to minimize the pain, but to remember the presence of God in it.
One Gentle Step Toward Healing and Connection
Larry also started taking small, brave steps outside his comfort zone. Volunteering. Reaching out to other men walking a similar road. Sharing music and prayer with his wife, even when she couldn’t respond. He wasn’t waiting until she died to begin healing. He was honoring her now, while also beginning to reconnect with his own life.
If you’re in this season, take one gentle step:
- Visit, even if it’s just for 10 minutes.
- Sing an old hymn together.
- Pray aloud by their bedside.
- Write a note, even if they can’t read it.
This is still caregiving. It still matters.
Let Grief Wait Its Turn
The full grief will come. And when it does, there will be time to mourn completely. But today, let grief wait its turn. Today, you are still a spouse. Still a son or daughter. Still a Christian caregiver.
And that matters deeply.
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Transcript
Introduction to Grieving While Caregiving
[0:00] You’re still showing up. You still visit. You still pray over her. But somewhere deep inside, you wonder, am I even a caregiver anymore? And why does it feel like you’re grieving someone who isn’t even gone yet? If you’ve ever wrestled with that in-between space where your loved one is physically here but relationally slipping away, this episode is for you. Because grief in dementia caregiving doesn’t follow all the rules, but there is a way to walk through it with peace, perspective, and even purpose. Hey Christian Care Companion, welcome to Dementia Caregiver Support for Christians, the podcast that guides you through dementia care with peace.
[0:51] Purpose, and God-honoring relationships. Because being made in the image of God means your value or your loved one’s value doesn’t fade with memory loss. And caregiving, it is not random. It is part of God’s design. This isn’t a medical model. It is not just about managing symptoms or avoiding burnout. It is a relationship-centered approach that brings clarity, peace, and hope, even in the hardest moments. So if you’re a Christian spouse, an adult child, or a family member walking this road, you are in the right place, and you don’t have to do it alone. If this kind of conversation is stirring something in you, if you’re starting to realize this is the kind of support you’ve been missing, I’d love to invite you to a free live workshop on Saturday.
[1:52] June the 14th at 12 p.m. Eastern. We’ll walk through three ways to ease your dementia caregiving using a live and interactive workshop for you to participate in. It is very interactive, and it’s designed with you in mind.
Larry’s Caregiving Journey
[2:13] Register now at thinkdifferentdementia.com forward slash WSL and come be a part of this with us. Now, let’s step into a powerful conversation I had with a husband named Larry. What he shared will resonate deeply if you’ve ever wondered, how do I grieve someone? Who’s still alive without losing hope or my identity as their caregiver. Let’s listen to a live moment from Ask the Dementia Coach question and answer session with Larry.
[2:55] All right, Larry, it is your time, sir. So let’s say it is six months from today and caregiving is now easier. What does that look like for you? Well, I hate to hesitate, but it’s probably I’m past that point in the caregiving. Okay. My wife has been suffering from vascular dementia for eight or nine years, and we went through the caregiving at home. In the last three years, she’s been in a small adult family care facility. Okay. In the last two and a half years, she’s in under hospice care. And so I’m still caring for her, but not like it was before. It was 24-7 before, and then it just went to zero, which has been kind of a shocker.
[3:39] But six months from today, if you’re still in the caregiving journey, even though you’re not the 24-hour caregiver, how is your caregiving journey easier? What would that look like for you? Well, I think I started that a couple of months ago, realizing it could continue on a few more years. It could be tomorrow, it could be a few more years. So I am trying to start to volunteer, starting to consider maybe getting a job, doing something different to expand my world from what it was with 24-7 and constant caregiving. So I’m just now starting to realize I need to start taking care of myself rather than just, not just, but spending 100% of the time basically for my I totally understand. Now, what is it going to take for you to achieve that goal? Is that figuring out how to, you know, handle your own stress and overwhelm or guilt or what is it going to take for you to actually achieve that goal?
[4:39] Being, I don’t believe that there’s any guilt or very little guilt, but there’s always that thought. But just to figure out ways to stay busy and also to deal with what I would call social anxiety. After being kind of isolated for two or three years at home with my wife, it’s a little bit challenging to get back involved.
Seeking Support and Connection
[5:00] Thus, I am forcing myself to reach out and to get involved with groups and with individuals. Okay, so how can I best serve you today? Well, I had been looking for a group to get with on grief share, but I was unsuccessful in finding grief share when your spouse is still alive. So somebody had recommended me or recommended you to me. So I found you or however, I don’t remember now how we got connected, but I’m here today to see what direction I need for assistance, what I need for grief share. It has been overwhelming the last few years, but things are much brighter.
[5:41] I’ve used scripture meditation for the last couple of years. It has, I think, exponentially helped me to handle the stress and the burnout. And so that’s been my saving grace right there is just finding out how God wants me to handle this day by day by day by day. Absolutely. And I very, very much appreciate what you just said about, you know, getting it from Scripture because, you know, life is overwhelming, just even just day to day, right? It doesn’t just need to be caregiving or caregiving somebody who is living with dementia that is overwhelming. But when we come to this from a biblical perspective, it does vastly change our journey, vastly. So, a couple of questions, if it would be okay for me to get some clarification from you. Sure. Have you spoken to a biblical counselor or your pastor about what you described as grieving somebody who is still alive? Yes, I’ve had some meetings with Christian counseling, so that’s… Some of it may have been helpful, but I’m not so sure that it’s been a slow process. A slow process? Yes, it is. Yes, sir. You seem to have a couple more gray hairs than me. Life is a slow process, isn’t it? It sure is. And sanctification is always seen in hindsight, right? We don’t see it in front of us. We always see it behind us. Now.
[7:10] How, you know, would it be okay if I shared with you kind of what I would recommend you consider? Sure. Okay. One of the hardest things is grieving somebody who is still alive. And that is definitely something that we have to acknowledge. Having said that and having recently been sort of in your position, not entirely in your position, the reality is that you really cannot grieve somebody who is still alive. Grieving actually only truly starts when the person passes. And so my situation is a little bit different than yours. I don’t know how much you know about my story, but my mom actually passed away about seven weeks ago, eight weeks ago. And she was living with vascular dementia, and she did not pass away because of vascular dementia. She had a medical situation occur that precipitated us needing to do some procedures and some medical things with her. And then she actually coded in a procedure and shortly thereafter passed away. But having said that, I had been on this journey with my mom for an extended period of time and recognizing and feeling what you describe as anticipatory grief does exist.
Understanding Anticipatory Grief
[8:38] It absolutely is a thing, but the reality is you really cannot grieve until the person passes. And the way that I was able to come to grips with what happened with my mom was that I had been prepared. And the way I had been prepared was because I truly, as a Christian, believe in God’s sovereignty. I believe in God’s providence.
[9:06] Those two things have been extremely comforting to me because… Because I knew and I know that this whole journey that I’d been on with my mom was for my good and for God’s glory, as well as part of my sanctification process, as well as my mom’s, right? So saying all of that to say that I’d encourage you to love your wife where she is for as long as she is still here with whatever abilities she has for your relationship, which I recognize and understand looks different. But she can still connect with you as her spouse. And even if your wife doesn’t necessarily remember you as Larry, she does know how you make her feel. She does know that she feels safe with you. She does know those things, right? And when we are believers, our responsibility as a believer is to trust and obey. And your journey can be very short. She could pass away tomorrow or it could be several more years. We do not know.
[10:14] So I’d encourage you to not dwell so much on the what’s coming, but to enjoy what you still have left.
[10:24] There are ways that you can create moments of joy. There are ways that you can create connection with her. You are certainly, as a believer, able to pray with and for her, even though she is not necessarily able to participate. So that is where I would encourage you to focus your efforts and your time and worry about grief and grief share after she passes.
[10:49] Enjoy the remaining time you have with her because it is precious. The time is going to come when she passes.
Finding Purpose in Caregiving
[10:55] But until then, make as many memories as you can with her. Whatever way that you are able. Now, having said that, back to what you said about, you know, social anxiety and not feeling as easily connected. Are you going church on Sunday or, you know, COVID changed a lot of people’s habits and things? Are you still worshiping in a physical body? Yes, I am. And also involved in a men’s Bible study. Okay, good. So I would start small. I would start there. And I would start by just, I love your idea of volunteering. I think that is great. You could consider with your experience now as a family caregiver who is a believer to find out who in your congregation might be in your particular situation, but several steps behind you and come alongside them and see whether you can support and love on them. And I have been doing that with two different couples. Wonderful.
[11:55] You’re on the right track, Larry. You’re definitely on the right track. So can you tell me what is one action step that you can take from our conversation today that moves you closer to a goal of re-engaging and taking care of yourself and enjoying the remainder of your marriage with your beautiful bride? Well, I will continue just to spend the time with her, and we pray together when we’re there, but there’s no indication that she does know anybody. She does not really communicate in any way, and she’s bedridden and has care for everything, but we still pray together. I choose to believe that she knows who I am or knows who her three daughters are. My three daughters are all believers, and so two of them live locally, and they see her weekly as well. I see her probably four or five times a week. I just need to, as you said, be involved with others, not thinking about myself, but involved with others, helping them in their grief system. So I have, in the last few months, reached out to three different men that have either are going through it or they have lost a loved one and trying to spend time with them each week in prayer and encouragement. You are doing this. I’m doing better.
[13:16] I’m doing much better. It’s just that I had a couple of different people say that I really would benefit from Grief Share. But Grief Share kind of somewhat told me the same thing that you told me, but you added some reason for that, which I appreciate which they didn’t. So I’m glad just to kind of move on and trying to look at life with an attitude of gratitude. Absolutely. My favorite verse is, you know, to give thanks in all circumstances, you know, 1 Thessalonians 5, 8 and 19.
[13:47] And that has been very, very, very hard. But in the last year,
Strategies for Connection Through Music
[13:50] there’s much more I’m grateful for each day than before it was pretty hard. For sure. One more additional strategy you could try with your wife is sing hymns. Sing with her. Sing to her and with her. Her favorite hymn, whatever it is. And singing and music is retained very, very long. So give that a try. Even if it’s for five seconds that she is paying attention, I would definitely try singing. And you’re going to laugh at me. Hymns work great. But another thing that works really well are childhood songs. Yeah, she was a Sunday school teacher for decades.
[14:27] Yep. So anything that goes right back into those old memories, even ABCD or Row, Row, Row Your Boat. But if we can find some hymns or spiritual songs that she would be singing, you sing with her and do some repetitive clapping and things like that and see if you can just bring her out, even if it’s just for a few seconds.
Building Community and Support
[14:47] All right, Larry, thank you so much for being here. I really appreciate it. 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. Absolutely. Yeah, for sure. I would highly recommend Lizette. She’s awesome. I appreciate that endorsement.
