Episode 14 When Caregiving Ends: What to Do with Love That Has Nowhere to Go

What happens when the role that gave your love a daily place to go suddenly ends? Because for many parents, caregiving was not only something you did—it was exactly how you expressed love throughout the course of your daily life.

In this episode of Beyond the Loss, I sink deep into one of the most hidden aftermaths of child loss: the sudden, silent termination of the active caregiving identity. Whether you spent years monitoring a medically fragile child, managing the fragile shifts of mental illness, or waiting for late-night phone calls during an addiction crisis, your entire physical, emotional, and psychological system was meticulously structured around someone else's survival.

In this episode, we discuss:

• Love’s Daily Language: Exploring how structured habits like tracking symptoms, managing schedules, and making decisions serve as practical channels for parental love.
• The Post-Crisis Disorientation: Why an empty calendar and a quiet house feel less like freedom and more like a devastating loss of purpose.
• The Biological Bracing: Understanding why the mind keeps hunting for a crisis to solve even after the physical caregiving role has concluded.
• Unpacking Non-Dual Truths: Embracing the human reality that you can deeply miss your child while simultaneously feeling a heavy sense of relief from the unbearable demands of long-term crisis management.
• Somatic Foundations for Recovery: Introducing body-based frameworks to help your nervous system gently de-escalate from a state of chronic fight-or-flight.

Connect with me:
Website: https://sharonspano.com
Podcast:https://sharonspano.com/podcast/podcast-beyond-the-loss/
YouTube: youtube.com/@SharonSpano-BeyondtheLoss-Host
Substack: substack.com/@drsharon

Interested in Being a Guest on Beyond the Loss? Apply here to share your story: https://sharonspano.com/podcast-guest-beyond-the-loss/

About the Show 
Beyond the Loss: Life and Identity After a Child Dies is a podcast dedicated to helping grieving parents, bereaved families, and professionals navigate the emotional, relational, and identity shifts that follow the death of a child. Through compassionate conversations and clinical insight, we create space for healing, understanding, and honest reflection after profound grief.

Transcript

SPEAKER_00 0:09

Welcome to Beyond the Lost. This is a space for parents who have lost a child in any way at any age, where no grief is ranked, explained, or excluded. I'm Dr. Sharon Spano, developmental coach, systems thinker, and a parent whose life was forever changed by the death of my own son Michael. What happens when the role that gave your love a daily place to go suddenly ends? Welcome to Beyond the Loss. Because for many of you as parents, I know that caregiving, if that was where you stood during your relationship with your child, was not only something that you did, it was how you expressed your love throughout the daily course of your life. And sometimes after a child dies, love has nowhere obvious place to go. And that can sound strange at first because of course the love is still there. But for many of us as parents, especially those who spent months or years caring for a child through illness, disability, as I did, maybe even addiction, mental illness, struggles, or any prolonged crises or illness, love has a structure. We don't often think of it as that, but it has a rhythm and it has a daily expression. And there were appointments, perhaps, to manage, or details to remember, calls to make, changes to watch for, decisions that had to be weighed. And that's particularly true if there's transition or if your child weakened or changed through the years, and maybe even moments when you were always preparing for what might come next. And then your son or daughter passes, and all of that stops. I know it only too well. But the love doesn't stop. The daily expression of that love changes completely and forever. So what happens when caregiving ends? This was a question that came to me over this weekend because at the time of this recording, it is the Monday after our wonderful Fourth of July celebrations. And as many of you know, I'm privileged to live up in the mountains of North Carolina during the summer months. And during this week in particular, the mountain is filled with children and grandchildren, little ones running all over the place. And my husband and I were having a conversation as the weekend unfolded and we watched all of this going on around us. And I put to him uh kind of something that I've been perplexed about for years. And you may have heard me talk about it over the Christmas holiday as well, because I'm always kind of amazed how much we enjoy watching other families during these holiday seasons. But then knowing that for whatever reason, it doesn't bother me. Like I don't feel sad that they're not my children or my grandchildren. I'm not jealous or envious that these other friends of mine are getting to experience all of this wonder with the little ones. It doesn't bother me at all. I love watching them and living through it vicariously. And as we began to talk about it this week and we both kind of came to the same conclusion, part of it is because of the caregiving experience that we went through for so many years with our son Michael, that while I enjoy watching other families, it also at the same time brings up a level of PTSD for me, the stress of parenting, the stress of being ever watchful. And I don't know what that means. It sounds kind of odd, but because of that expression and that experience over the weekend, I wanted to talk about it with you this first week after the holiday in very candid ways. So, again, what is the question? What happens when caregiving ends? Because I know for many of you, that's been a real part of your parenting experience. And what do we do with the love that no longer has a daily place to land? Because caregiving, again, is how we experience or express our love. So in the last episode, I introduced a new series that we're moving into through the summer months called The Hidden Aftermath. And we began by talking about how the body remembers. And that's pretty much what I was just describing to you that happened to me over the weekend. I was simultaneously watching the children in the pool and everywhere, you know, fireworks and whatnot. And I'm enjoying it, but I'm enjoying it from afar because part of my body is remembering, again, the stress and the fatigue. And I'm glad that it's theirs and not mine, to be quite honest. So I wanted to begin there because so much of the grief lies beneath the surface, especially for parents who have spent years on alert for whatever reason. So I want to stay close to that territory today, but I want to look at it through a slightly different doorway, the caregiving role. Now, for many of you, caregiving became the organizing structure of your daily life with your child. No matter what their age, this can still come up for us in a variety of ways. And you may not even have thought of it in that way while you were just living it, because often when we're living that caregiving, and I'm not talking about just the ordinary caregiving that we do as parents, although that also would be ripped away from you if you lost a son or daughter, particularly in the earlier ages. But I'm talking about the stuff that we have to do when a crisis arises, or particularly when it lingers over time. So it becomes then this caregiving experience, part of the rhythm of being a parent. It is not separate from our love, even though we don't think of it quite that way. It's one of the ways that we experience love as it moves throughout the day. And this is one of those hidden losses. I truly believe this, that can follow the death of a child. And again, it's so nuanced and often so much at a subconscious level that we don't have full awareness of maybe why we're feeling off on a particular day. So the child passes, your son or daughter is now gone. And of course, that is always our central loss, our central sense of sadness. But alongside that, something else disappears. And that is the role of the active caregiver, the daily responsibility of protecting, of advocating, of monitoring, in my case, managing all the day-to-day activities and responding, all of that is suddenly ripped away. And I know I've talked about on earlier shows about it took me many years to get into a new rhythm. I was so used to the routine and the schedule and what Michael needed to stay healthy that I couldn't get past that. So this loss, this kind of caregiving experience, again, can be very hard to name because it almost feels silly or selfish to say it out loud. And it's mixed with that non-dual thinking that I'm going to dive into in a minute. So the child is gone, your son, your daughter, my son. And that, of course, is the heartbreak. So, how do we talk about the fact that we may also miss the routines? Or maybe in my case, I didn't miss the stress of those routines so much. I didn't miss the responsibility as much as I missed my son. I did miss the small acts of care, but not the ones that were so dramatically connected to his demise and his critical illness. But there's this daily knowing of what needs to be done that each of you experienced. And how do we talk about that missing, a role that may have been exhausting, frightening, and even for most of us, very much overwhelming? It can feel confusing, I know, because many of us caregiving parents have stretched beyond what anyone else can see or even imagine. And even today, I can feel myself get a little frustrated when people talk about other caregiving experiences that they've had for maybe a short period of time. And I know that they don't have awareness of what it was like for my husband and I to go through that for over four years. So many of you may have lived with that fear, that sense of isolation, that high alertness. And of course, along with that comes very little rest. And when the caregiving ends, there's a level of devastation, even disorientation, emptiness, and sometimes, as I've been talking about, even a kind of relief that feels very difficult to admit. And it's not that you as a parent want the caregiving to necessarily continue in the same way. It's that the caregiving was what had you connected to your child. And when it stops, you feel the absence in every part of your day. I know this again from my life with Michael, because it included a level of attention that was simply a part of my life for his 27 years. I was always listening for him, watching for him, and trying to understand what he needed, most particularly as he started to change in the later years of his life, even when he couldn't tell me in the way that other people might. I knew his patterns, I knew his sounds, I knew the signs that something was different, and I knew what comfort looked like for him. I knew what distress looked like for him. There were medical appointments, decisions, equipment, physical care, and all the ordinary tasks that become very familiar when you are caring for someone with complex needs. And because Michael lived much longer than anyone expected, that caregiving was not a short season, as I mentioned a moment ago. The last four years were particularly challenging. And it was part of the shape of our family life for over 27 years. For many of you, it may be different, it may be longer, it may be shorter. It doesn't matter the circumstances. At some level, as a parent, you stepped in in some way or another as a caregiver. So when your child is no longer with you, the loss is not only emotional, it's practical, it's physical, it's relational. Your daily life has changed forever. And Craig, you know, and quite frankly, I didn't know what to do with all the extra time. And I actually felt guilty for having the extra time. I no longer needed to listen for Michael in the other room, and there was no longer the same schedule of care or the same patterns around his body, his comfort, or his needs. And my attention no longer had to be available in that very specific way. I remember the first Thanksgiving that we had as a family, and it was some years after Michael passed. I literally felt like I must be missing something because I had the dinner in order so early and ahead of the game. And I was used to having Michael in his wheelchair in the kitchen with me. And of course, it would take twice as long to do anything as I tried to help him help me. And so that first year when everything was done, I was quite certain I totally was off schedule and had to have forgotten everything. And again, my husband reminded me, no, you were just able to do it in less time. So there's these missings and all of these odd little nuances that creep in that are linked to our sense of caregiving. And that kind of absence is difficult to describe, which is why I want to have the conversation, because from the feedback that I'm getting, many of you parents are happily from the feedback I'm getting, I know that many of you parents, even my closest friend Jane, are expressing to me that it's comforting to have someone else name things that you've been feeling perhaps for years and years and years, but maybe were too embarrassed or shy or unclear on how to express. And it's nice to know that you're not alone in some of these nuances. I think many of you who've lost a child after a high alert of consistent caregiving, then understand that this is another part of the grieving process that the people outside of caregiving often fail to recognize. And even myself, I didn't recognize it within myself for many, many years. So this can be true again in many kinds of loss. A parent who cared for a medically fragile child as I did may suddenly no longer have symptoms to watch or decisions to make. Perhaps a parent whose child struggled with addiction may no longer be waiting for that late-nine call or trying to know when to step in or when to let go. If you've lived with a child with serious mental health challenges, you may find that you no longer have to monitor mood, safety, silence, or any of those fragile signs that something within them is shifting. And if you've lost a child after a consistent level of caregiving beyond the typical, I'm simply suggesting that you recognize that your entire system, physical, mental, emotional, and psychological, may still be organized around the many tasks associated with your caregiving. I think that's an important thing to note and honor within yourself. Because this is part of what makes this so disorienting. The outer role of caregiving ends, but the inner readiness, that anxiety, that being on high alert, whatever it was for you, still remains and your body remembers. There may be a strange emptiness in the calendar or a quietness in the house. There may be a sudden absence of phone calls or a silence where urgency used to be. Some part of you is still waiting for whatever it is that you used to do. And some parents describe this feeling as restlessness, as if their hands don't know where to go. I remember my friend Jane and I talking about the first time we traveled without our children, who both were in walkers in their early years, Michael, much later, in a wheelchair. But we always had to take so much stuff with us everywhere we went. And I remember the first time I got on an airplane and it was just me. I literally felt like a part of me, which is true, was missing. And I didn't know what to do with all the extra time I had to just sit on a plane and read a book felt very, very odd. So others might feel exhausted in a way that couldn't they couldn't feel while the caregiving was happening because when you're caregiving, you just keep pushing yourself. You don't have any other choice. And sometimes then the body will finally collapse or give us some sense and let us know through illness or some other thing that it just can't do it anymore. And sometimes the mind keeps searching for the next problem because it has been trained to stay ahead of crises. Some of you may be even feeling guilt, as I've mentioned, because I know that was very true for me. Guilt for feeling a level of relief. Not that my son was gone, but that he was no longer suffering and that there was no longer the stress of trying to figure out the next best course of medical action for him. Guilt for the missing caregiver, guilt for not knowing what to do with the time, guilt for wondering who you are when you are no longer needed in that same particular way. Now I know that these reactions can be painful and again, disorienting and unsettling because, again, we feel guilty for having some of these thoughts or feelings. But I want you to know that they are understandable and they are a part again of that somatic, that body expression. When love has been expressed through consistent care, particularly for a very long period of time, the end of caregiving again can feel like love has lost its daily language. The expression of your love has been offered through the caregiving, right? So I want to pause here because this is very important. I want you to understand that I'm not suggesting that caregiving is the same as control. It is not the same as fixing, and it's not the same as saving. Because many parents get those confused and feel like if I cared so much, why didn't I save him or her? Why didn't it work? Well, the answer is very simple. You didn't have control. Simple, but at the same time very complex because as parents, we are used to having some level of control, right? But one of the things that I learned when Michael passed, and I didn't learn it till literally the very last moment, was that I was never in control. I did my job the best I knew how to do. I loved him well. My husband and I put all we had into keeping him healthy, safe, and alive. But in the end, I realized I was never in control, that whatever happened at the end was a decision between him and God. And if you're not someone who believes in God, well, that's okay too. But I encourage you to find a way to make sense of how that life transition occurs, because I do firmly believe that we're not in control, that the person themselves often have control, particularly if they've been ill for a long time. Now, there's no way to make sense of it if your son or daughter died suddenly in a horrendous accident. I don't really even know how to make sense of that myself, but I do believe that our time here on this earth is what it is, and another person doesn't control that. So we know that these are painful thoughts, and there are limits to what love can prevent, and there are limits to what advocacy can change, and there are limits to what ongoing vigilance can protect, and there are also limits to what even the most devoted parent can carry. We do our best, and things happen in spite of our very best. And when you've spent years trying to protect your child, it can be very hard for the body and the heart to accept that there is nothing more you can do or could have done. What I want you to think about is that this is not a failure of love, it's the grief of a role that has nowhere to go. This is one of the places where you may need to be kind to yourself. After the loss, the world may assume that the demands have ended because in many ways they have, but that doesn't mean that you're suddenly free. Again, it can feel like disorientation, emptiness, guilt, exhaustion, or a strange quiet that no one else understands. And I can't say that enough because I want to call your attention to these various aspects of grief within your own body, within your own mind, within your own spirit. And if the caregiving was intense as mine was, you may not yet know how to live without organizing the day around someone else's survival. And that is why the phrase love has nowhere obvious to go feels important to me. Because again, we all know as parents that our love does not die when our children pass. The relationship is not gone. I've been talking about how it just changes. But those daily tasks are gone and the daily structure is gone, and we're left with trying to figure out how to move on and how to recreate that structure in the midst of loss. Because the practical channel for that expression of love has now changed. So that may leave you asking often without saying it directly. What do I do with myself now? We talked a lot last season about identity. Who am I now? What do I do with this instinct that lives within my body to check, to watch, to protect, to respond? What do I do with the love that used to be expressed in such very practical daily ways? These are not small questions and they cannot be answered quickly, and they are different for every one of us. But I want to encourage you to honor that those questions are rising up within you. So for some of you, the love may slowly begin to move into memory. For others, into some form of advocacy. We've talked a little bit about that, how some parents, and you're going to meet some on the show in the next few months, who are doing some pretty amazing things in memory of their children. For others, into caring for another person. For some of you, it's going to be about prayer, writing, service. Maybe you have some very specific rituals. That you engage in, or simply, as I had to do, learning to rest again. That was a big one for me because I was always going, going, going, trying to get everything else done in between and in the midst of Michael's care. But again, I want to be careful here because we don't have to rush to redirect the love. And we don't have to turn caregiving into a mission. We don't have to ever make something useful out of the loss. I've said this repeatedly. Sometimes the best thing you can do is just be where you are. And sometimes, before love can find a new expression, there has to be a time to grieve the old one, the daily one, the embodied one, the one that knew the schedule and the signs and the routines and the preferences and the needs of this child you love so much. There is also a kind of tenderness and acknowledging that caregiving may have been complicated, as I've expressed to you from my own story. And it may have included devotion, resentment, love and exhaustion, gratitude and fear, purpose and depletion, closeness and isolation. That's all of those elements. And I've been talking to you a lot about non-dual thinking that there is a place and a space to hold both. And that does not mean that the love is less real. It makes the caregiving human. It makes us human. And when the caregiving ends, all of the complexity arises up again in a very different way. You may miss what was beautiful and also feel the weight of what was unbearable. I often shift to memories where Michael made me laugh in the middle of the caregiving moments that we shared at other times that were so frustrating. And you may feel sorrow and relief in the same breath, and you may long for your child and also know that he or she could not have continued in the same way forever. These are very difficult truths to consider, but they're not necessarily contradictory. They're part of what it means to have loved in circumstances that ask more than any parent should have had to carry. And I don't mean to romanticize caregiving. It can be very sacred and it can also be exhausting and it can deepen love, but it can also isolate you as the caregiver. It can create moments of profound connection, and it can also require you to live for years with very little rest, very little privacy, and a very little sense of a life that belongs only to you. All of those considerations cause us to grieve the role because it connected us to our child, and it may need us to recover from the many demands of the role that took a toll on each of us, perhaps in very different ways. Again, both can be true. And this is just another form of non-dual thinking that I've been talking about. So as I think about the aftermath, the hidden aftermath of grief, I wonder if this is what part of what makes it so difficult to explain. Again, people often understand that we miss our child, but they may not understand that our whole day used to be organized around care if that was true for you. And they may not understand that your ears still listen for sounds that will not come. They may not understand that your body still expects interruptions for many of us in the middle of the night. And they may not understand that an empty calendar can feel less like freedom and more like emptiness. And they may not understand that when you've spent years caring for someone else's body, their needs, their safety or survival, learning to care for yourself again can feel very odd. So if this is part of your story, I want to say this. The end of caregiving is not only the end of tasks, it is the end of a way that your love was organized and expressed. And if you feel lost, restless, exhausted, guilty, relieved, empty, or unsure of what to do with yourself, that doesn't mean you're grieving incorrectly. I will never suggest that you are grieving incorrectly. It may mean, however, that your life has been shaped around care for a very long time. And now something in you is learning how to live without that structure. Again, not because the love is gone, that will never happen, but because the daily form of it has changed. As always, I want to offer you a pattern to practice this week. And I do these in all the solo episodes to leave you with something simple to notice. If caregiving was part of your relationship with your child in whatever form, I invite you to pay attention to the places where your body or your day still reaches for that role. Maybe there's a time of day that feels empty. Maybe there's a sound you still listen for. Maybe there is a task you no longer do, like making lunches or delivering medications or waiting for the school bus. But some part of you still expects that to happen. Maybe there's a quiet moment when you do not know what to do with your hands, your attention, or your time. When you notice that, you might gently ask, What form did my love take here? Was it watching, preparing, listening, comforting, advocating, protecting? Was it simply being present? You don't have to answer perfectly and you don't have to turn this into any big project, but perhaps you can acknowledge this was one way I loved my child and it mattered. And then if it feels right, you might ask one more question. What kind of care do I need now? Not as a replacement, not as a solution, just a small recognition that the caregiver has also carried something and now needs something else. And the caregiver needs care. So when caregiving ends, the world may see only that the tasks have stopped, but inside you, something much deeper may be shifting. The daily structure of love has changed, as I've said, and the routines are gone, and the vigilance may still remain, and the body may still be listening, and the heart may still be reaching for something to do, and the parent may be left with love that has no obvious place to land. If that is part of your experience, you're not alone and you're not wrong for missing even the difficult parts. They were part of the life you shared and they were part of how you loved. And perhaps with time and tenderness, that love may find new forms, but it doesn't need to be rushed. For now, it may be enough to notice what has ended, to honor what it required, and to offer some care back toward yourself, the one who carried so much. Before I close, I also want to offer a few resources, as I promised last week, for those of you who may want to explore this body-based dimension of grief and trauma more deeply. And one place to begin is the work of Dr. Peter Levine, very important to my own healing process. And he develops somatic experiencing, a body-based approach to work with trauma. His book, Waking the Tiger, Healing Trauma, is often considered a foundational introduction to this type of work. And if you want to go a little deeper, you might also look at. And if you want to go a little deeper, you might also look at in an unspoken voice or trauma and memory, both of which explore how overwhelming experiences can live in the body and the nervous system. I want you to really think about this because again, our world, our society expects that we'll get on with things and move on very soon after we've had whatever form of celebration of life or funeral, whatever it is that you may have had. But remember that the trauma still can live in the body for years and years to come. So the good news is you can go on YouTube and watch some of Peter Levine's videos and learn more about this little known aspect of who we are as human beings. Because what we want to remember is that overwhelming experiences such as this can live in the body and the nervous system, as I said. I'll include those resources in the show notes along with a link to Somatic Experiencing International, where you can learn more and search for a trained practitioner. All of this is based on research. There's nothing woo-woo about it. I wouldn't give you anything if I didn't know it was grounded in research. And I want to say this: if what you're carrying feels overwhelming, or if you're experiencing panic attacks, flashbacks, chronic sleeplessness, or physical symptoms that are interfering with your life, it may be very important to seek support from someone trained in traumatic grief, somatic work, or trauma-informed care. You don't have to do this alone. And this is just another way to address the grieving process that is different from what we know as talk therapy. You may need a combination of one or the other, but I would encourage you not to ignore the somatic aspects of the body and how grief can be carried within the body until care. Thank you for spending this time with me. If this conversation stirred something for you, you don't need to make sense of it right away. There's no timeline for understanding and no right way to carry what remains. Beyond the Lost exists to honor parents who've lost a son or daughter and all the complexity that this implies, and to support the professionals who walk alongside them without comparison, judgment, or explanation. Wherever you are in the long after, you are not required to arrive anywhere else. Until next time, take gentle care.