Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Justin: Good morning, Allison.
Allison: Hey, Justin. I’m so excited about our conversation today because we have with us two of my favorite people, besides you, of course. We have Aisha Adkins and Eric Schlueter, and we interviewed Aisha a while back to hear her perspective on caring for both of her parents. And I’m very sad to share that a little more than a year ago, her mother passed away, so while she continues to care for her father, she’s here today to talk with us about grief, specifically how grief might be experienced by a caregiver. So, Aisha, welcome back. You are our first repeat guest on the podcast, and we’re so glad you’re here.
Aisha: Thank you. I’m honored.
Justin: And we are also grateful to have with us. Eric Schlueter. Eric was a caregiver for his wife, Melissa, who had the same underlying disease that Sean has, Fanconi Anemia, and Melissa passed away just over a year ago as well. And Eric is here to share what his experience with grief has been like. So, Eric, welcome and thank you so much for being here.
Eric: Yeah, thanks for having me. I’m excited.
Allison: Good. So, Aisha, can you remind our listeners a little bit of your care story? Like, how long have you been a caregiver? Do you live with your parents, or do you live near them? Like just a little reminder of what your caregiving story has been.
Aisha: Most definitely. So, my caregiving story started officially in 2013, and I say that because, in retrospect, care showed up in a lot of different ways over the course of my life. But in 2013 my mother was diagnosed with frontotemporal degeneration. At which point I chose to leave my job in healthcare and not knowing much about the disease itself, I did know typically that with dementia, there would be a point in time where it would no longer be safe for my mother to be at home by herself. So yeah, so I left my job, I became her caregiver and cared for her for about ten years until her passing in July of 2023.
Allison: And you also care for your father, because didn’t your care journey actually even start during college? Am I remembering that correctly?
Aisha: It really did it. It started, but I didn’t identify as a caregiver at the time. However, my father suffered his first of what would be a total of five strokes now, in 2006, and I started taking care of him. And what I looked at as, you know, simple ways making him meals, helping him get up and down the stairs before he could recover his vision and things like that. And but I really didn’t understand what caregiving was at the time, nor did I have the language around the care kind of infrastructure, and I didn’t understand what I was doing until much, much later, I was able to look back and say, well, you know what care has actually been showing up in my life for a very long time.
Allison: So, while you were caring for your mother, you were also caring for your father, and you continued to care for him. Is that correct?
Aisha: That’s correct.
Allison: All right, thanks for sharing that with us.
Aisha: Of course.
Justin: Yeah, Eric, can you share with us a little bit about your caregiving experience?
Eric: Yeah, Melissa had been diagnosed very young in life with the disease, but largely they were just monitoring it much through her adolescence and high school and you know, into college and things like that. It really wasn’t until about fourteen/fifteen years ago that she started to just get, like, pneumonia and never really like healing from that. And then that just kind of started the investigation of what’s actually going on underneath the covers and things of that nature, and it ended up being like an immunodeficiency. And I don’t know if the community is totally understanding if there’s an alignment or a correlation between the two diseases or not, but so for six years, she did, you know, immuno, like IVIG, for every three weeks for six years. And then through that journey, I mean, she was obviously able-bodied and things of that nature, but time off of work, bringing her to appointments, you know, things of that nature. And then bone marrow transplant was in 2016 , and then just from 2016 until passing in 2023, there was just one cancer after another, one ailment after another, one challenge after another, even elective surgeries, right to just prevent cancer and having elective surgeries. And you know, the journey got more difficult as time went on.
Justin: For sure.
Allison: Thank you both for sharing those stories. I know that either of your stories could, we could have a whole episode just hearing that, and so I know it’s hard to condense all that you’ve done and experienced into this little short summary, but thank you for sharing those for us.
Allison: We know that unfortunately, grief is something that we’re all going to go through. But I’ve heard from many of the people that I work with that the way that it might be experienced by the person who was the person’s primary caregiver can be really layered and complex and just sort of different than sort of if you were not the person’s caregiver. And so, I’m really looking forward to hearing, like, how that has been.
Justin: So, for both of you, you were caregivers for years and are now about one year out from the time of your loved one’s passing. Can you share with us what it was like right away after their passing, and what kind of feelings and emotions were you experiencing at that time?
Eric: For me, I think what, overall, what surprised me was how hard grief was, immediately. My wife was on hospice for six weeks, and was, you know that last year was a difficult struggle, so we processed a lot of anticipatory grief together, right? You know, just the, you know, not being able to see grandkids together, not being able to retire on the rocker and just the rocker on the porch, right, type of example, and just not being able to travel and do all those things that you had planned, you know, for your later, later years. So, we processed a lot of that grief, and we processed a lot of that loss. And we talked about how it would impact our kids, and we talked about things that we could do. And so, I kind of went into, I mean, you can never prepare yourself really, for the passing. But I went into it, I think, with a little bit thinking it was going to be a little bit easier than it was, and it’s really allowed me time to reflect on, really the differences that I how I see, the differences between anticipatory grief and then the grief of loss, and how different they are. So, I think that was some of the initial things, I think, you know, right away. But I’ll say, you know, from now being a year out, there’s things that were harder for me in June this year than they were in June last year. And I think that is because the business of death is real, and you’re in a clouded mind, but you’re going through all the logistics of death and, and there’s just things you have to do that can’t be delayed and, and you have to focus on that stuff. And, and this June was, I think, harder and heavier. I felt all the feels that I maybe should have had last June, but just didn’t allow myself to have the time to take care of those, or acknowledge those. because they were deprioritized with the other things that I had to do immediately.
Aisha: You know, it’s interesting for me. My initial reaction, the moment that my mother took her last breath, my initial response was relief, which is something that I’ve grappled with, and something I’ve felt a lot of guilt around. Because you know, why on earth would you be relieved that your loved one, your mother, is no longer living, right? What I tie that relief to is a relief that, A, she is no longer suffering through the journey that she was experiencing. You know, people don’t often associate dementia, with the physical decline, but there was a lot of physical pain that accompanied frontotemporal degeneration for my mother. And she was in a lot of pain in her last weeks, and so she was no longer experiencing that, but also, realistically, the relief of this part of my life, in many ways, coming to a conclusion for now, and I say that again, I still provide care for my father. And so, there is a sigh that I liken to a pause where I felt allowed to exhale for the first time in over a decade. And that’s perhaps different from other’s experiences, but that was my initial reaction, and it’s, it’s an honest one. And a year out from that, I think what I am realizing, similarly to Eric, is that there were so many things that were left suspended during the time providing care for my mother that were left unaddressed. Right? Whether it be my own health ailments, my own mental health and mental wellness kind of journey, as well as the loss of other people in my life who I did not have the opportunity, I think, to mourn in the way that I would have liked, or in the way that I would have had I not been so hyper focused on providing care for my parents. And so, it’s something very, there’s this like liminal space that you live in trying to figure out what you should reprioritize in your life now that you’re in kind of a different phase of the grief journey, a different phase of the care journey, now that those things are shaped differently, kind of, what do you do with the time that you have, and how do you make it count?
Allison: Aisha, thank you so much for saying that. I have heard the relief piece from many caregivers, and I think that it’s something that I’m so glad you just said on air, because I think that people are afraid to say that out loud, because like you said, like you would think, like, why on earth would you feel relief in this like the worst moment of your life, potentially? But so powerful when you said you felt like you were able to exhale for the first time in ten years. I mean my goodness, right? And so we talk on this podcast a lot about how, especially those of us who are caring for someone with chronic illness or injury that really, like, our only options are either, like, continue to be a caregiver, which we talk a lot about how that can be really, really hard, or become a widow, a widower, and or, you know, like, we don’t want either of these options. They’re both terrible. What we really want is to go back. And that’s not an option. And so while we don’t want our person to pass, I have heard from many people that like, I also, just this caregiving, you know, it’s a lot. And so that there can be a bit of relief, both that you’re not, your person’s not suffering anymore, but also that you yourself are no longer doing this really terribly hard thing. And so, I’m glad that you were able to sort of call that out for us today, because I know that you’re not alone in experiencing that, but you, but people don’t often feel like they can say that out loud. Eric, is there anything in that space that you, that you experienced sort of like caregiving was awful, and now I don’t have to do that anymore? And if not, that’s okay too.
Eric: It is common to have grief of loss around function, just the function of caregiving. I’ve heard that in some of the grief groups that I’ve been a part of. I personally haven’t experienced it. You know, you should mention you do have a lot of time on your hands now, and you have to be intentional about making that time count, right? So, what is your next story, or your next chapter say, and what do you do with that time? I can definitely resonate with the relief, I think. And again, I’ll speak for myself, I think it’s easy to bright side our own situation and say that, you know, you know I’m relieved, or you know, Melissa’s in a better place, or something of those things. Hearing somebody else tell you that doesn’t, it doesn’t land the same, right? You know, but it, but it’s very, it is somewhat comforting to be able to bright side yourself in some of those situations.
Justin: So for many of us, caregiving is a huge part of our daily lives and our identities. And Aisha, I know you’re still caring for your father, but even so. For both of you, and I know Eric, you touched on this a little bit, but have there been moments where you’re wondering what to do with your time or energy? Is there some sort of like an identity crisis, where you identified so much as a caregiver and that’s just gone? Do either of you have any further thoughts on that?
Eric: Intentionality. It comes down to intentionality. I have to put myself into connecting with others. I joined multiple grief groups with different types of approaches, different types of audiences, to just, you know, learn from others that are on this journey, help others on the journey, if there’s anything in my story that can help them, but then also giving back. I’ve spent time with the disease foundation of the FA community, just sharing Melissa’s story and getting the information out of some of the things that Melissa held private, and, you know, getting that into the community, maybe that can help, you know, providers and other patients and dealing with something. Volunteering, being, being a part of the grief program at church, volunteering with, with some of the local nonprofits, and just helping in that way. And then just working to share my story. I’ve had opportunities to speak about grief at work, because we’ve got a caregiving function at work, and I’ve been invited to speak on grief there and what that means, so. And then I’m also partnering with the local provider network. Melissa’s care was at the U of M. I’m partnering with the U of M and doing some patient advocate, caregiver advocate type work around clinical cancer trials, and it feels good to get back in that space, because Melissa’s transplant was successful in 2016 because somebody did that work 20 years prior, right? So being able to give back and just use what, what I’ve experienced and witnessed Melissa experience, and give that back, and hopefully, you know, help somebody else.
Allisonr: Aisha, before you answer, I just want to note that all of the things that Eric just said are amazing and admirable and fantastic, and caregivers, if you are listening, or if you’re a griever, and you are listening, and you know you’re spending, you’re trying to fill your time, just like, chilling and sleeping and doing these things. So, Eric, just like, set up, like all these amazing things he’s doing, which are fantastic. And I also don’t want it to be that, okay now you have to go and volunteer with all the organizations and give back. So, we’re glad that he is. And if that’s not the way you, caregivers, who are listening are spending your time, that’s okay too. There’s lots of ways that this can look. So, yes, okay, Aisha, what has that felt like for you? Like is it, I know you’re still a caregiver, but anything with your time and your identity that you want to share that is different now?
Aisha: Yeah, well, it’s really interesting, and I thank you for bringing that piece in about kind of just rest, combined, Eric, with your experience of giving back. I think for me, because I’m still an active caregiver, I’ve had to figure out how to strike a healthy balance between giving to others and giving to self. Which I think you know, all caregivers struggle with, but my father’s care needs are not the same right now that my mother’s were, and so I do have more time in my schedule to explore identity around what does Aisha enjoy? What brings happiness to my heart? You know? How do I want to just exist in the world in addition to being a caregiver and before ultimately, my father’s care needs increase, again, pr my father’s care needs increase? You know, he is living with vascular dementia, which, different from FTD, is a progressive disease that will ultimately end his life. And so, it’s something that I take into consideration. Again, I love the word that Eric used about being intentional with your time and really making determinations about what you will and will not give your energy to. And it’s something I honestly, I struggle with because also, I am a people pleaser, and I want to say yes to all of the things, and I want to participate in everything, and I’ve had to really teach myself how to say no, how to say, how to set boundaries with my experiences. And, you know, I think it’s been a difficult journey trying to figure out what defines me now in ways that I wasn’t able to explore. Like a lot of people were in their late 20s and early 30s, kind of figuring out what their lives were to look like and what their hobbies and interests were, and you know, how they wanted to move about the world. I didn’t have that opportunity at that point in my life. So I’m trying now to take on some of that, but it’s certainly a challenge because, yeah. It’s, it’s almost difficult to articulate, but it’s something that when you’re younger, people say, oh, you’re just finding yourself. And, you know, when you’re older, it’s referred to as a midlife crisis, right? It’s kind of like, I think it has a lot to do with, like, the perspective that we have as society, where we do not necessarily leave room or exploration throughout the course of our lives. And I’m looking to change that.
Allison: Yeah, wow. Eric, can we go back to you about that, because you and Melissa started dating, or have known each other since like, middle school or something, right? And so, for you, you know, like, figuring out, like, who you are without her, and what has that been like?
Eric: Yeah, we met and, like, we met at 12, started dating at 14, got married at 20. So we grew up together, yeah, like, experienced all the things. So even as I go through and downsize and go through stuff, there isn’t piles of Melissa stuff and piles of Eric stuff. It’s like all our stuff, right? Because every, every home we bought, every major purchase we did, we did it together, right? And it kind of goes back to what we’re talking about a little bit earlier too. Is just like the processing of grief. When we were processing anticipatory grief, we processed it together. Right? We got to talk about it together. And you would, you’d have that difficult conversation, and then you’d get to, you know, you’d go to sleep, and you wake up and your person’s there, and you still get to do life. And now this journey is, is personal. And I think grief journeys are all personal, but this, this is, I don’t have Melissa to process this grief with, right? This is, this is, like my first big thing I get to do on my own. And that’s not to say that I’m not surrounded by my in-laws, and my mother, and my brothers, and my children, and stuff like that. I’ve got a huge community of people that support me and my grief groups and the relationships I’ve met in those grief groups, so I’ve got an incredible amount of support by people around me, but it’s still my journey that I don’t get to have, like, my number one person with to go through, right? And that’s, and that’s, that’s hard, right? That’s, that’s difficult, because there’s so many times you just want to, you know, process with them, right?
Allison: Yeah.
Eric: Yeah, because that’s what you’re used to. That’s what I’ve done my whole life, right? Is process everything as Eric and Melissa.
Allison: Right. Yeah. So, whereas Aisha is trying to, like, never really had the chance to figure out, like, who’s Aisha, right? You’re trying to figure out who’s Eric without, as opposed to like, Eric and Melissa, Eric and Melissa, like is the bundle? Yeah, yeah. I want to talk a little bit about guilt. And so I often hear from caregivers who experience moments of guilt after their loved one’s passing. So maybe it’s like you said, Aisha, because they feel relieved, and then once they feel relieved, they feel guilty that they feel relieved. Maybe it’s about something like all these like, woulda, coulda, shouldas, moments of like, ooh, I should have done more of that? Or did I do this well enough? Was I good enough caregiver? Was I good enough daughter, spouse, all the things? Is guilt, something that either of you have experienced during this grieving time.
Aisha: I think that’s an excellent question. I feel like guilt is something that I experienced throughout my care journey and that I experience now. And where it shows up for me is I experience a lot of symptoms of PTSD, a lot of symptoms, including nightmares where, you know, I am trying to keep my mother safe, and I can’t. Right? And this is something that’s ongoing, and that even a year after her passing, I still experience regularly, if not almost nightly. And to me, that signals that there’s something unresolved. There’s this level of guilt that I wasn’t able to save my mother from her experience that was really difficult. Now I know intellectually that I did the best that I could with the resources that I had, not being a medical professional, only being a daughter, you know, trying to navigate care, as I had, kind of on-the-job training, right? But there’s something about the course of the disease, something about what I was unable to give her I feel, something about the emotions that I had while she was experiencing dementia and living with symptoms that can be really emotionally taxing. I feel like I didn’t always respond as kindly as I could have, right? And so I live with that guilt now, and lived with it while she was still alive, and it’s something that I don’t know. It may be an ongoing presence in my life from here on out. I hope that my perspective changes. I hope that I don’t remain stuck in this, this space of guilt because it doesn’t serve anyone and I can’t undo or I can’t take things back, right? But it also informs the way that I care for my father and the patience that I try my hardest to muster, that I think for me, you know, the way that grief manifested itself was in anger, often times with my mother. And you know, I think being cognizant of that helps me to care differently now, but, but the guilt is very, very real and very persistent for me.
Allison: Thanks for sharing that. Eric, how about you?
Eric: Guilt, guilt for me is a little bit different. I don’t carry much guilt, and don’t deal with guilt as one of the symptoms of grief very much. Grief has tons and tons and tons of symptoms, right? Maybe symptoms is even the wrong word, but it has lots of things that come with it, and guilt is one of the big ones. I deal with other big ones I just don’t deal with guilt. I definitely have the woulda, shoulda, couldas. I definitely have some of that. But for me, I and Aisha mentioned this. I made the best decisions with the information I had at that moment, right? I didn’t, I didn’t know things five years in the future when making a decision in the present, right? I mean, see you as a caregiver, as a spouse, you know, as a couple, you make the best decisions you can with the information that’s in your hands to move forward and you try to make that decision. And is it the right decision? Is it the wrong decision? I mean, who’s to say? I don’t know. I think it’s, it’s, you just make the best decision you have, you know, with that information. Yeah, certainly there’s things that I wish we could have done this, I wish we would have gone there, I wish we would have, you know, those types of things we process. But I’m not, I’m not burdened by the decision we’ve made, because I know it was the best decision that we did with that data and information that we had at the time. I will say it changes my look on things now, you know. And kind of not throwing caution to the wind, but kind of like, there’s no better time than today. Like, how, how much should I push off for the future, when your futures are never guaranteed. You know, Melissa. Melissa passed away young, right? And, you know, so there’s some of that that I think about now. Like, okay, if there’s, if there’s something we want to do, let’s just do it now. Let’s plan it soon, not too far down into the future. And that’s a difficult balance. I mean, Melissa went through her journey when we were raising our kids, right? So, we’re trying to, you know, figure out family life, or trying to figure out what college is going to look like. We’re trying to figure out what our own retirement future is going to look like. We’re trying all those things that you do as a young family, and trying to balance all of that while, while you make present decisions as well. So, no real guilt, but just again, I think we made the best decisions we did with the information we had at the time.
Allison: Yeah.
Justin: Yeah. Thank you. Thank you both for sharing about that. So aside from what we’ve talked about so far, are there other aspects of the grief process that you think are unique to people that have been caregivers?
Eric: It’s the specific to caregivers part that is that I’m struggling with. I think, I think two areas of struggle that I deal with personally is loneliness. And despite all the things I had shared earlier, with trying to be intentional, with trying to fill my plate with connection, with trying to fill my plate, with giving back, with volunteering, you know, with doing that stuff every single day, there is large portions of loneliness. And that doesn’t matter if I’m out to dinner with my family. It doesn’t matter if my kids are out hanging out with me. It doesn’t matter if I go somewhere and do some event at something, right? You will come back home and there will be loneliness, and that’s every day. And that’s hard, you know? And I would say the other thing is, is just finding the excitement in doing things without Melissa, because we did so many things. We did everything together, right? In finding the excitement in doing things without her. You know, I traveled last fall, went down to Alabama by myself, met up with some friends. I was down there, went and toured a cave by myself, and it was fun. But when the experience is over, the first person I wanted to tell was Melissa. So, it was just kind of that, it’s that loneliness, it’s that like I’m being intentional. I’m doing those things, but with it comes that loss. It’s persistent, it’s present, it’s always there.
Aisha: Yeah, I 100% agree, or I should say, I resonate very strongly with those experiences. Although, you know, I was providing care for my mother, I can relate to that void that is left when your person is no longer there. And I think because for me, where I where the as caregivers piece ties in is, I think there’s this like additional kind of interwovenness. That we experience as caregivers. I know that my parents were married very young. They were high school sweethearts, you know, all of the things so similar to you and your wife, Eric. And I watch, you know, my father kind of tried to muster that, that joy of doing things without my mother. And the same goes for me, you know, I speak around the country, I give back. I, you know, have these moments that I want to be able to share with her. And when I get home, you know, she’s not there. When I pick up the phone, I’m calling my dad, not my mom and my dad. And I’m an only child, and so very much, we kind of viewed ourselves as sort of the Three Musketeers. And it was always, there was always this kind of this tripod effect with us. And, you know, having one of those, those pillars are no longer there, it’s definitely there’s sadness attached to that. But I think that, like, as her caregiver, I don’t know if there’s like, an additional layer of closeness that is developed, at least in my case, that I don’t know if I would have had that not being her caregiver. I think that it just created this, this additional connection point that I don’t know, that everyone experiences, because this is the only life I know, you know?
Eric: I would also add that, you know, grief is really an expression of love and the loss of that, right? And so, I could, I could see how caregivers could experience grief much stronger because of the relationship that they had with the person that they were caring for. Much of the caregiving, you know, is around somebody that you’re really close to anyway, so there’s that, that familial connection, you know, so you’re going to have a long love connection there, you know, anyway. But, yeah, I wonder if there’s something there that is because caregivers are doing it, that you’re building a stronger personal connection there.
Allison: I think there’s, there’s a layer of intimacy of caregiving, you know what I mean? You are involved in this person’s life at a different level, right, and layers, then just a typical spouse or a typical parent child. And I just think that the depth of that, I wonder if that transfers? So, like Aisha, if your mother had died of natural causes at a later age, and you had, just like, lived down the street, you know what I mean? Like, and you had that kind of relationship? But I imagine you had this really intimate, personal relationship where you were doing these things for her and witnessing and seeing parts of her that you probably wouldn’t have seen otherwise, and how that closeness that we caregivers experience with our person translates into the loss and the depth of the loss.
Aisha: I agree. I agree, and I think also that potentially, you know, had I been living down the street or across the country, I think I would have grieved, maybe the opportunity to spend time with her differently. I think that I would have maybe, maybe then I would have experienced a different kind of guilt in the shoulda, coulda, wouldas around I should have called more often, I should have visited more often, right? But given that I was very much enmeshed in her life in a way that’s inextricable, I you know, it’s just simply missing. It’s missing that closeness. It’s missing that intimacy that I think defines a lot of the grief that I experience as well.
Allison: Yeah. Aisha, so you are still caregiving, and I’m wondering if, you mentioned this a little bit before, about sort of the patience level or something like that. But how, how has the experience of losing your mom impacted how you care for your dad, or how you think about or experience your caregiving life now?
Aisha: It’s really interesting. Allison. I consider the ways in which the care journey can be different this time around. At this point. I think having experience with caring for someone who’s been diagnosed with dementia in the past, to a degree, I will know more what to expect. However, of course, we know if you’ve met one person living with dementia, you’ve met one person living with dementia, right? And it can the disease can manifest itself in so many different ways, particularly because these are two different forms of the disease. With that being said, I am older now than I was. I am living with my own chronic illnesses. I have experienced injury, so I have to take into consideration my capabilities as a caregiver, and also my father just being an entirely different human being and having not only different medical needs, but just different social needs. And you know, my father and I have always engaged differently. Our relationship has always been different from the relationship that I had with my mother prior to sickness, right? And so, I think now, because I understand what is expected of my role as a caregiver, and also I’ve been able to have discussions with my father about what he does not expect me to do. I’m in a better position to do some planning. Whereas with my mother’s illness, although it came on over time, we didn’t recognize it as such. We didn’t know what we were seeing, and we, we didn’t really know what to do. I think now I’m better able to prepare, and I’m able better able to name what it is that I will need to be the best caregiver that I can for my father down the line as his disease continues to progress.
Justin: Yeah. So, you’re both about one year out from losing the person you were caring for. How has the grieving process changed and evolved over that first year?
Eric: One of the analogies that was brought up in one of the grief groups, or some, one of the attendees of the grief groups is that, and it’s something that resonates with me, is that grief is a is a giant boulder, and that boulder does not shrink over time. That boulder just gets easier to handle. So, you get stronger. So, the grief and the loss and that weight never gets smaller, you just grow. You get stronger. You figure out how to take the tools and the things that you learn and, you know, try to move, you know, forward with that. In some grief areas, they talk about well, so we’re still only a year out. I’m only a year out, and I’ve heard that the second year can be harder than the first year, so I’m not really looking forward to that, right? But I think, I think some of the grief groups that I’m a part of, and what’s inspiring to be in those grief groups is that they’re all on the same journey. They’re just at the same journey in different points. Some people are weeks, some people are months, years, decades, right down the journey, but they’re still on that journey. And it’s inspiring and hopeful that, you know, I’m going to be able to get to where they’re at, right? And to be able to, you know, experience things. I got blindsided a couple weeks ago, and one of the things that I’ve learned in grief group is that, you know, milestones, anniversaries, holidays are always going to be hard, and you can prepare for them mentally. You can do different things, right, to celebrate those in ways that are different. You change that function to be different so that you can create a new memory. And that’s good in being able to prepare for things that you know are coming. And grief will blindside you, and a year out, grief blindsided. We had a recent loss in the family, and it was the first time I read Melissa’s name in the proceeded in death by, and that hit me like a gut punch, you know? And it was, I don’t know why, I try to prepare for things. I try to imagine things and think about things so that I can be prepared for those things. And I never once imagined that Melissa would be in a preceded and death byline. Honored that she was there, grateful that she was called out. But reading it was like, oh, that’s terrible, you know?
Allison: Yeah, I’m glad that you brought up that piece, Eric, because I think for some reason, people are like, well, it’s been a year, so like, ta da, right? And it’s like, no, there’s nothing magical about that. And in fact, I think at the beginning, you talked about how, like, in the beginning, there’s all this, I think you call it the business of death. Like, oh, there’s all these, like, logistics that you’re working on. And it’s kind of once the dust settles that some of the feelings are able to emerge, right? And so, I think for any of us who are like, oh, well, I mean, he lost his wife a year ago, come on. You know, it’s like, oh no, no, let’s continue to check in on our friends and to realize that, like, there’s nothing magical about the calendar, you know, being in year two as opposed to year one. Yeah, Aisha, what about oh, I’m sorry, Eric, did you want to add one more thing or add something?
Eric: I was just gonna say I expected year two, the start of year two, to be easier. I just anticipated all the intentionality I’m putting into grief groups and, you know, working my grief plan and working through that, I had kind of expected year two to be, the start of year two to be good. And then I got hit with a lot of those feels, and in June that I wasn’t expecting. And I, just immediately had to give myself grace and know that it’s not a calendar thing. It’s, it’s not like on this day, it’s going to be magically better. And I just have to give myself grace, because I work through it.
Aisha: Yeah, yeah, yeah. I would say, you know, I’ve heard the same that year two can be more excruciating in some ways than year one, because in year one you’re kind of treading water, and you are trying to stay afloat, whereas year two, now that people have perhaps stopped checking in, and things have quieted a bit, that’s when you’re left with your own thoughts. I think that for me, the way that the grieving process has changed for me, I think, is that I have decided to spend more time, I don’t know. I think, listening to myself, listening to what I need, identifying ways in which I think it would be healthy for my life to change at this point that I couldn’t necessarily identify, you know, a year ago. I think that I’m able to identify things that might be triggering, might be activating, and kind of to navigate those with a bit more grace toward myself, like Eric said. I think that, you know, I’m really grateful and really blessed to be able to have access to mental health professionals, access to support groups, access to a church family, you know, all of these kind of support systems. But again, as Eric said, this journey is one that no one can go on for you and can only partially accompany you on. I think there are elements of grief that are really so singular to the individual that’s experiencing it, and while there may be some similarities, certainly we’ve seen here that Eric and I share some similarities, there are somethings that are going to be very, very different just based on our lived experiences. And, you know, I try to just lean into learning more and more about myself. I think in addition to giving honor to my mother, I think the last year was more about making space for her, and this year is more about making space for myself in some ways.
Allison: You’ve both mentioned a few of these things, but are there things that you have found to be helpful as you have moved through this year?
Eric: Being in community with the grief stricken helps. Folks that are grief adjacent have a lot of suggestions and ideas for you to do to help you get better, but until you’re the one that deals with it directly, until it’s your immediate loss, until you’re front row at the funeral, it’s different, right? And being in community with people that are dealing with the same thing, and you’re able to process and work through things. Our journeys are separate. Our journeys are different, but you’re able, you’re able to process and work through that in community has helped me. It’s helped me to give back. It’s helped me to learn from others and things that they’ve tried. Because it’s not, it’s not a one size fits all. It’s not just because it worked for me, it’s going to work for them, type of thing, right? So being in community with the grief stricken has helped.
Allison: And there’s a program that you attend that’s national, right?
Eric: It’s actually international. It’s called GriefShare. And it’s held predominantly through a faith-based organization. You can go to griefshare.org and type in your zip code, and there’s classes, you know, everywhere.
Allison: Yeah, yeah. And one of the things that I have found interesting, Eric, is that you have continued to attend our Negative Space support groups, which you know, many of those folks are current caregivers, but there’s you know, you and a few others who are grieving, and do you mind just sharing sort of what makes you keep coming back to a group of current caregivers? You would, I would think that some people might think that would be really triggering to be in a room with people who are still doing it, when you’re kind of on the other side of that.
Eric: I guess one of the things that changed for me is I have a lot of compassion for people that are sort of still in the game, if that’s fair to say. Like, and I want to be able to give back in any way I can. And I get a lot out of listening to those podcasts. I enjoy them. I listen to them, and being a part of the support groups and being able to share how, you know, something has impacted me. I mean, I’ve listened to various things, and you get tidbits of information from something that helps me process, right? So, if I can share my story, and something in my story resonates with somebody to try something, to do something different, to help their journey. I think that’s why I stay connected, it’s just in a way, to give back.
Allison: Sure. We have a new person who just joined the support group, who has lost two spouses, and she said that, and I’ve heard this from other people who are grieving, that they weren’t able, didn’t feel like they were able to process what this whole caregiving thing was while they were doing it. And so, they attend because they feel like now they can process, oh yeah, that was traumatic to go to that medical space. Oh yeah, I did do a lot of advocating, right? And so, I have found that to be interesting, how different people are receiving different things from it. So, thanks for sharing. Yeah. Aisha, how about you? What has been, have you found to be helpful as you’ve moved through this year?
Aisha: Yeah. I mean, I agree that being a part of community is really vital to my journey and continuing this care journey. And so, it’s interesting. I actually have a group of friends who started out as a group of, like as we started out as support group with the Love Labor Project. And we continue to gather, and we continue to meet, and we’re all at different parts of our journey. Some of us are still actively caring. Some of us have lost our person. Some of us are somewhere in between, but we continue to gather, and we continue to make space for each other and continue to connect with one another. And it’s been, it’s been really wonderful to be a part of a group that, though experiencing different parts of the journey, shows up for each other and is able to identify with each other as we kind of phase in and out of parts of caregiving and parts of grief, and just be there for each other as friends. But it’s, I think, a combination of, you know, being in community, and then also finding ways to be at peace by myself, I think, is also really important too. Because, you know, when you are a caregiver, you are rarely alone, and so kind of reorienting myself to solitude in a healthy way has also been something that I’ve found to be vitally important. And I’ve really, for me, been focused on, like, holistic health and healing and seeing how I can kind of put myself back together again. Yeah.
Allison: Mmhmm, yeah. And I just want to mention that both of you, I mean, I’m fortunate to know both of you in my life. But both of you have been really open, either on social media or in groups, or in conversations about your grief experiences, and I think that that, you know that’s not for everyone to share in that way, but I’m grateful that both of you are open in those ways, because I think that it helps the rest of us. So, thank you both for being so open and sharing, not just today, but just in your lives, about what this has been like.
Justin: Yeah. So, we always like to give strategies and tips to our listeners who are supporting caregivers, which you know really is everybody. So, what would you say to those people about how they can best show up for the grieving caregivers, maybe the former caregivers, who are now going through that period of just dealing with the loss and grappling with who they are now and what to do and all of that?
Eric: I would say, don’t forget to check in on them. It’s very common, you know, in the height of passing that everybody surrounds you. Meals come and people surround you, and people reach out, and then time, and it’s usually not very long that large community is gone, you know. So, a dear friend of mine, uh, during that, that immediate, you know, grief time, you know, he had said, you know, Eric, come up to my place in like, six or eight weeks, whatever, whatever the day was, you know. And he just knew how, I don’t know, but he just knew, like, I’m gonna need something in the future. I’ve got all this, I’ve got all this help and support right now, but, you know, in six weeks, just come up, just do it, just be here, you know? And that was, it was so helpful, right? Because you just didn’t, you don’t know what you need in four or five weeks, I don’t know what I need tomorrow, right? So, for somebody to just have that, that forethought to be like, hey, you know, and then in the future, just come up. This is the date, this is the weekend, just, just show up, right? Yeah, that was really helpful. So, I would say just, just don’t forget about your people reach out, yeah.
Aisha: Yeah. I agree. There’s really very little I could add to that, Eric. You know, continue to check in, continue to just let your people know that you are thinking of them and that they matter and that they’ve not been kind of lost to the abyss of grief. I think it can be very easy. We all have very busy lives, but I think if we all take moments to check in on each other, and you know, the people that are grieving may not always have the capacity, the desire may be there, but the capacity to do that may not be there. And so don’t take offense to the distance that may have been created and, you know, just continue reaching out, continue making the effort to be a part of their lives. It makes a difference. I heard from a friend today who often just sends me a text saying, How are you doing today? You know, how are you feeling today? How, what is life like right now? It’s a little thing that means so much.
Allison: Yeah, so most of our listeners, including myself, are still like in the weeds of this caregiving thing. With the new perspectives that you both have, is there anything that you would say to us, those of us who are actively caregiving as we continue on this path?
Eric: You’ve had a whole topic on anticipatory grief, and we talked about it a little bit at the beginning. But I was, I was taken back by how much grief, the actual grief after loss, is very different from anticipatory grief. I think, other than just being mindful of, you know, the journey, when the journey does end, there’s probably a more elegant way to say it, but brace for impact, right? Because it’s going to be different. It’s going to be very different. Despite all the difficult anticipatory grief that you’ve processed on your journey. They are two very separate and very unique things. And I don’t know if there’s a way you can be prepared for it, right, but just be mindful that it is going to be different.
Allison: I had a spousal caregiver say to me once because she was experiencing so much anticipatory grief, she said, I think once my husband passes, people are going to think I’m cold because I’m just not even going to be crying because I’m grieving so much now. And I was like, I think that they, just because you do one doesn’t mean that the other’s not going to happen. I think that unfortunately, we do both, right? We experience both the anticipatory grief and the grief after and so. So yeah, thank you for that reminder, Eric. How about you, Aisha? What would you say to us caregivers?
Aisha: I would say, you know, don’t forget to take care of yourself in the small, meaningful ways that are accessible to you. That doesn’t necessarily mean a spa day. We know that it can be difficult to, fit things like exercise or even eating healthily in, but I’m talking about the things that feel good to your spirit and feel good to your soul. So, you know, my therapist said, if it means eating the cheeseburger, eat the cheeseburger. If it means, you know, if it means listening to some of your favorite music, you know, make yourself a playlist. I did that for myself, and it’s something that I revisit often, and it was tremendously helpful for me during my grieving, my anticipatory grief process. You know, it’s about finding the small, subtle ways to make sure that you are held and cared for when, when others may not be showing up for you in the way that that you’d like them to. You know, being able to find ways to rely on yourself in that way, I think, is, is vital. You know, if you feel like you don’t have a support system. You know, if there are supports, you can put in place, even just seeking out those spaces where you are seen and where people share similar lived experiences via a support group, via this podcast. You know, I think you know, if there’s one little thing you can do for yourself, it can make a huge difference.
Allison: Yeah, we like to call those micro moments here, yeah, yeah. And I love how you said, what can feed your spirit and your soul? Because I think that when we talk about self-care, often people think about your physical, you know. And so, I love that what’s gonna feed your spirit and your soul? Yeah, this has been such an important, beautiful conversation, and I’m just so grateful to both of you for taking the time and for sharing with us, because unfortunately, it’s something we are all going to experience probably multiple, multiple times in our lives, but as caregivers, we’re likely going to experience the loss of the person that we are so intimately caring for. And so, you know, Eric, you said there’s nothing you can really do to prepare, but I think conversation like this can help us prepare a bit, you know. So, I’m just really grateful for both of you and for all the sharing that you did with us today. Thank you.
Justin: Yeah, thank you both so much for taking the time to be here. It’s been good to have this conversation.
Eric: Yeah, thank you. It’s been an honor to be here. It’s been exciting. So yeah, it’s been a different experience.
Allison: Yeah, usually, you’re an avid listener, Eric. So, I love that now you’re, you’ve been on it. So yes, and we will absolutely have a support group on this topic. So, watch for that, and so we can continue to be just like Aisha said, in a space where hopefully you can feel seen and with others who are going through this. So, thank you both, and we’ll talk again soon.
Justin: All right.
Eric: Thank you.
Aisha: Sounds great. Thank you.