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Navigating ALS with Rachael King

ALS is a heartbreaking disease. Just ask my guest Rachael King. Her husband, health care activist Ady Barkan, recently died from complications of ALS at age 39. They have two young children. Despite all that ALS took from Rachael and her family, they navigated the constant change and setbacks and found a way to live and be together for the six years that Ady lived with ALS. Rachael’s grief is still really fresh, yet she’s telling her story to carry on Ady’s legacy. She hopes to help other caregivers who are feeling overwhelmed and facing the impossible.

You can learn more about Rachael’s work and her forthcoming book at:


[00:00:00] Sarah Cavanaugh: Hi, I'm Sarah Cavanaugh, and this is Peaceful Exit. Every episode, we explore death, dying, and grief through stories by authors familiar with the topic. Writers are our translators. They take what is inexpressible, impossible to explain, and they translate it into words on a page. My guest today is Rachael King. 

Her husband was healthcare activist Ady Barkan. He died from complications of ALS just six months ago. He was 39 years old. In this episode, Rachael and I talk about the constant change that comes with ALS, the grace she had, and the humor that Ady brought to their relationship. Ady was diagnosed with ALS four months after the birth of their first child. 

And during the six years that Ady lived with ALS, they found a way to keep living as a family. Ady continued his work, they had their second baby, and they even traveled a bit. We really get into it. Rachael is able to share their whole family story from diagnosis, her role as a caregiver, how getting in-home care changed their lives in every way. 

We also talk about her grief after Ady died unexpectedly and how their story is shaping her next book.  

Well, welcome to Peaceful Exit. Thank you so much.  

Rachael King: I'm so happy to be here.  

Sarah Cavanaugh: It's so great to meet you. We found you from your New York Times article earlier this year. It really struck me, amidst your grief for your husband, who died only a few months ago, that you're proactively sharing your story. Ady was very public with his experience and advocacy, and do you share that same drive?  

[00:01:52] Rachael King: Yeah, I mean, I think for him, sharing his story and connecting his illness and his disability to the work that he had been doing as an activist for a long time was a way to really make some meaning out of this horrible, tragic event. 

He was really good at finding ways that individual people's stories could connect to what seemed like these huge structural problems in our society. And so that's what he was able to do with his own story once he was getting more involved in healthcare and disability rights. So he was first diagnosed in October 2016. 

Our son, our first child, was four months old at the time. And we did tell family and friends right away. You know, I think a lot of people. Don't share those kinds of diagnoses before it's. apparent, right? Because for about the first year, you wouldn't really have noticed that anything was wrong. And then it was about a year into Ady's diagnosis that he started thinking about connecting it to the kind of political work he was doing. 

And there was a debate that was going on at the time. about funding for Medicare and Medicaid. This was after the ACA had been saved but there was still obviously kind of constant challenges to it. And so he went along with other colleagues to D.C. to participate in protests around this and decided almost spontaneously, to start connecting that to what he was going through. 

And even though he didn't really need that much equipment at the time, we had already been having a lot of issues with our health insurance company denying equipment that he needed, um, you know, putting up all of these barriers to him, getting into certain kinds of clinical trials and that sort of thing. 

And it was on that trip to DC that on the way home, he happened to be on the airplane with Senator Jeff Flake and decided to confront him about it and record this interaction that they had talking about. Why Flake was voting for this bill and how that would affect body in the future.  

[00:04:05] Ady Barkan: You can be an American hero. You really can. You're, you're halfway there. If the votes match the speech, think about the, um, the legacy that you will…  

[00:04:19] Rachael King: Wow, that's well said. It's sort of serendipitous in a way, right? That he had that encounter and it went viral. And so from there, he just started talking more and more about this.  

[00:04:32] Sarah Cavanaugh: Well, I just so appreciate you showing us a window into your life as a family with your children, navigating the ALS diagnosis, you really humanized that struggle. 

How did you decide when to let the camera in, how much to share, when to let the documentary become a part of this whole journey?  

[00:04:54] Rachael King: So a year into his diagnosis, he was still walking, but he had a cane and he had a couple bad falls and his voice was starting to get pretty scratchy, so we could hear that his voice was declining. 

And so we really thought about the documentary as a memorial for our kids and something that they could come back to in the future and have this record of Ady before he was paralyzed, while he was paralyzed, because it covered that period and the work that he was doing. So I think, yeah, we really thought about it in those kinds of future terms as like something that we would want them to have. 

And we got really lucky, like we were really good friends with the director of the documentary, like we're still close, we talk a lot. They would come out maybe like once a month to film, it's not like they were there kind of continuously. So yeah, it really didn't feel intrusive. It just felt like, well, from time to time, you know, our friends are kind of coming over and recording things. 

[00:05:52] Sarah Cavanaugh: yeah. And how was that for you? Like when he made that decision to go public and connect the dots, I mean, how was that for you as his partner?  

[00:06:02] Rachael King: I think it was natural. Like it was just something he would do, right? Like he was always kind of taking these big leaps and having really big ambitious ideas and plans, especially for his work. 

And so that, that made a lot of sense. It did feel very vulnerable for Ady to like be on TV a lot. Not so much to be talking about the diagnosis, but I think because ALS is progressive, it's like things happen and you almost don't notice. And I think it was when he was suddenly appearing on TV or like he would do an interview and talk a lot and then his voice would be scratchy. 

And with ALS, it's like, you don't get that back, right? That's your new, Um, so there was definitely this feeling of a little bit of a trade off of like, he can do this work right now that's so important and having such a big impact, but he is losing some things as he's doing that. Um, he might be losing a little bit of vocal power or he might be really wearing his body out and you just don't really come back from that with ALS. 

So that was definitely. difficult and something we talked about a lot, but it did really feel like it was worth it.  

[00:07:13] Sarah Cavanaugh: Well, there's a lot of grief in the diagnosis when you're creating something out of that. Did that feel like it helped you with your grief? And maybe you might have wanted some of that energy that he was spending out in the world. 

I don't know.  

[00:07:28] Rachael King: I think it did help me having that public role. gave him a real sense of purpose that he was really worried about after his diagnosis and worrying about like, well, how will I do my, my work? And his work was really important to him. And he really cared about helping people and, and doing the kind of activism that he believed in. 

And so I think the fact that he then could diagnosis as part of his work really helped him foresee a future of continuing to do that. And I think that was really important for him too, because he very early on decided that he wanted to have a tracheostomy, so to have a ventilator inserted at the time that that became necessary when he couldn't breathe on his own anymore. 

And so in that sense, you're thinking of ALS less as like, terminal illness than as a kind of long term condition. And so I think, you know, looking forward to the future and thinking like, well, it may, it will be maybe many years that I'll be living on a ventilator. And it turned out to that he was on a ventilator for five years, you know, and he didn't want to just sit around the house and not feel like he was contributing and functioning in the ways that he used to. 

It was really important to him to be able to continue doing his work.  

[00:08:49] Sarah Cavanaugh: Yeah, well, I so appreciate seeing just how much care someone with ALS needs, how it changes and evolves as he loses some of his faculties. Did you always have the care you needed? How did you put that in place?  

[00:09:05] Rachael King: No, that was also something that developed over time and there was definitely a period of time where we didn't have enough support and that was really, really challenging. 

There was a time when he was needing more help with eating, for example, he couldn't really, like, hold a fork anymore, and then he always his diagnosis had a lot of trouble sleeping because it's very hard to get comfortable and kind of like rearrange yourself in bed. So there was a period of time where he was sleeping in a recliner chair, but it was still very difficult for him and he would need a lot of help overnight. 

He might need his breathing machine overnight. And for a while we didn't caregivers for that. I think there were a couple of things. We were worried just about having people around and feeling like it was kind of intrusive, you know, feeling like this is something we should do for each other as husband and wife, right? 

Like that's sort of part of the role. And I think that We had always done a good job taking care of each other. And so it sort of felt normal. Like, okay, now there's more caretaking, but like, this is sort of how we do it. And you know, we were worried about the expense too. Like it's incredibly expensive to have private caregivers. 

And so for a while I was doing everything. And then we had a little period of time where a wonderful friend actually volunteered to stay over three nights a week and he would do the overnights. But it really was not sustainable. Like waking up, it was like being with a newborn, worse than a newborn. He would wake up like eight to 10 times a night. 

I mean, it was, it was just intense. And so, yeah, so then we kind of gradually added caregivers. At first, we would have someone just in the morning and in the evening, so to help him get ready in the morning and then get ready for bed. And then once he had his tracheostomy, then we really needed full time care, and that's when we shifted over. 

And it really made such a huge difference. It meant that we could interact as the two of us again, rather than this constant, I'm taking care of him. And then trying to find a little bit of time for everything else that I need to do.  

[00:11:29] Sarah Cavanaugh: So as a mom, was it easy for you to invite these people into your family life? 

Because they're, you know, essentially strangers that become family. But was it easy for you at that point? I know you needed the support.  

[00:11:45] Rachael King: Yeah. I mean, I think that at first I didn't necessarily think of them as doing so much interaction with the kids. I definitely thought that they were there for Ady, and then it just sort of, of course, naturally happened. 

My kids are extremely social. My son, I think, is like one of the most extroverted people I've ever met in my life. Like, he's very, which is like Ady, but he's even more extroverted than Ady. So, it's kind of easy for him to just be like, oh, here's a new person. They're my new best friend, like, I'm going to make them do all these things with me. 

And so he sort of like did it himself in a lot of ways. Um, yeah, I mean, I think that I always did have an ideal of a family being like a little less enclosed and being more connected to friends or siblings or that sort of thing. And I think that the way that our. Society and our kind of family life is structured, often makes that really challenging and people want more of that community that they're not necessarily getting. 

And so we were kind of forced to do it, but it was something that I had always thought would be really nice.  

[00:13:03] Sarah Cavanaugh: So I've had three children, and I'm trying to imagine having a little one and having a partner who has a progressive disease. Could you just walk me through a typical day? Like, you haven't slept, you've gotten up eight times, but you're not getting up eight times just for your spouse, you're getting up for your baby too, I would imagine. 

[00:13:25] Rachael King: Yeah, I think again because it's progressive, it's like it just builds and builds and then you get to this point where it's like you're doing so much and you're kind of keeping the balls in the air, but probably not a lot of them. Um, so, Again, it just sort of expanded so that I was, by the time our son was probably two, I was doing almost all of the child care. 

Ady couldn't really, like, lift him anymore, and like I said, he had some falls. I think we, were relied on a really incredible community. Our son went to daycare from the time he was one. He went to the UCSB daycare where my daughter is now. She's going to pre-k in the fall, so that'll be like seven full years of having been in this one daycare preschool. 

So we had a lot of support there with the teachers. We have friends here who would often help out. So, you know, on the one hand, we had a lot of support and on the other, it was just like very intense. And particularly during that period, again, like before we had caregivers for Audie, it often felt like we sort of just couldn't. 

do things together as a family. You know, our son is like really active. He would always want to be outside and it was a little bit too much for me to get Ady ready to go out to do an activity and then be in charge of him. And so it often ended up like I would just be doing things kind of one on one with our son. 

Like we'd go to the playground or we'd go to the zoo. And especially like once Ady was in a wheelchair. It was very hard for me to manage the wheelchair and then also a stroller, right? So it's like it was, it was just really tricky at that time to take care of both of them myself. You know, when we were just at home, like that was a little bit easier, but having caregivers kind of like made that possible again, right? 

Because then there's a person who is paying attention to Ady, is driving the wheelchair, um, has all of his gear and all the things that he needs. And then I'm, you know, have all the toddler's gear, which is also a lot of gear. Again, it allowed us to do these things together as a family in this kind of paradoxical way that it's like, oh, well, now you have a person. 

here all the time who's not part of the family, but it kind of brings us back together in this really important way.  

[00:16:04] Sarah Cavanaugh: Yeah, I mean you could even go to Carl's basketball practices and.  

[00:16:07] Rachael King: And Ady could do that on his own then too. So like actually often Ady and a caregiver would go pick Carl up from school and take him to basketball practice and like they could do that together. and have their own kind of one on one time instead of just me getting one on one time with him.  

[00:16:24] Sarah Cavanaugh: Yeah. Well, I really admire your strength. I mean, how long you lasted. Thank you. That's really incredible. Really incredible. And not everyone has a great experience with caregivers. What do you think contributed to this incredible family you created? 

[00:16:40] Rachael King: Um, I think that a big part of it And you know, and this goes to the kind of structural issue, is that we were able to hire people privately ourselves, and we were able to, you know, set living wages for them, and also have benefits like sick days, vacation days, etc. And, you know, people always ask me, like, how did you do that? 

And the thing that's so sad is like, it was really specific to our situation and not replicable, but basically our health insurance company denied a piece of equipment that Ady needed. And so Ady, being a lawyer, decided to sue them. He didn't do it himself. We had a wonderful health care attorney we were working with. 

And so the settlement that they offered was to reimburse the cost of his home care. So in the end, his home care was pretty much covered. They didn't reimburse the full amount that we were paying each month, but it was pretty close to it, which was $30,000 to $40,000 a month. I mean, it was unbelievably expensive. 

So we were able to offer these kinds of benefits that made people want to stay long term, that made them feel appreciated and like they were doing a valuable job. One of Ady's caregivers said she always felt kind of ashamed of being a caregiver until she worked for Ady and then started to think of it as this like really important role that she was fulfilling. 

But yeah, I think that that that was a huge part of it that we had that stability. We had at least three caregivers who worked for Ady for like three or four years at least. One of them worked for him for over five years. So that, that really made a huge difference. I also always wanted to recognize the caregivers are doing a really important job and we respect them for the work that they're doing, right? 

I don't necessarily want them to feel like I'm imposing emotional labor on them, right? To also like love us and be part of our family. Um, but that is something that with many of them just developed over time. And so that's really wonderful.  

[00:18:55] Sarah Cavanaugh: So your family really expanded.  

[00:18:58] Rachael King: Yeah, yeah, I mean we had nine people in the end doing different shifts. 

And, you know, it was a really great experience for the kids in a lot of ways. They just, like, have this kind of more expansive idea of family that they love these people so much and they think it's so normal for them to be around and be in their lives. And, you know, and we're really close with them. a lot of his caregivers. 

Like, I'm still, one of them came over for dinner last night, another one's coming over for dinner tomorrow night. Like, I still see a few of them usually at least once a week. So that really, you know, I think it was a really, um, profound experience of realizing, like, how much that actually enriched our lives rather than being intrusive or feeling like having to have people in our home. 

[00:19:47] Sarah Cavanaugh: Was it helpful to you to have those sort of chosen family around you because they knew Ady and they, after he died, you would have that shared experience with him. Was that helpful to you?  

[00:20:00] Rachael King: Yeah, absolutely. I mean, um, I think for a lot of people looking at Ady or looking at someone with ALS, they might think, you know, Oh, this is a progressive terminal disease and like, this is, this is what happens. 

But actually, you know, for us, Ady's death was very sudden and unexpected. Um, he actually had a complication with his tracheostomy with his ventilator that he wasn't getting enough oxygen. You know, if we had been able to catch that earlier, um, or to get a different part that fit better, then he might not have died at the time that he did. 

And so. One thing that's really shared with the caregivers is the sense of like, we thought that this was a long term lifestyle, right? Like this was how we were going to be able to stay together as a family for many years. And it was many years, and we're really, really lucky that we got that extra time. 

But I think probably for people on the outside, it doesn't seem sudden, but it did feel really sudden for us. And so I think that is something that The caregivers really understand, like they really saw Ady as a full person and not mainly through the lens of his ALS.  

[00:21:18] Sarah Cavanaugh: Yeah. Yeah. I can only imagine what a shock it was, even though you knew he had ALS, that you never really prepared. 

[00:21:29] Rachael King: Yeah. And I think that's the thing with this kind of disease too. You never get to stable ground, right? Like any time you think we're at this new stage of the disease. Like a plateau. Exactly. Yeah. Then it kind of changes again. You know, he was pretty stable for three years after his tracheostomy. We had sort of thought that he might be able to live with the tracheostomy for at least a few more years. 

[00:21:59] Sarah Cavanaugh: Yeah. Yeah. It feels like you have so much strength and grace. Where did you struggle?  

[00:22:07] Rachael King: I struggled a lot when I was doing the full time caregiving. I really didn't like that and I felt like so much of what I really valued about my relationship with Ady was the way that we took care of each other and then it just shifted so much to me kind of exclusively taking care of him and not having that kind of reciprocity. 

That was just a real challenge for our relationship to deal with these kinds of changed circumstances. I think I felt a lot of, on the one hand, a lot of resentment, but then also a lot of guilt about feeling resentment, I guess, about not being able to just selflessly throw myself into this role and take care of him when he was having such enormous physical challenges. 

That's something that's really common in caregiving. I've talked to a lot of other partners. People with ALS or other diseases as well, that that dynamic happens a lot. It's really, really tough. You know, it's not just tough kind of like physically and logistically, all the things that you need to do and keep track of, but that kind of emotional dynamic is really, really challenging for particularly couples who end up in this kind of care give y, wait, anyway, caregiver patient situation. 

That was a real struggle and I'm just so grateful that we pushed through it and that we did come back to a place of feeling really connected, um, particularly in this pandemic. past year, actually. It felt like our relationship had really strengthened again, and we did a lot of fun things together. We did some traveling for the first time since COVID. 

Ady hadn't traveled at all since COVID. Yeah, I'm really grateful that we had that.  

[00:24:02] Sarah Cavanaugh: Yeah, yeah. Do you have any advice for people that are now in your situation or taking care of a partner, whether it's ALS or any other kind of a disease? Do you have any thoughts that you might want to share?  

[00:24:19] Rachael King: Yeah, one of the problems is that my main piece of advice is so hard to access, which is to have caregivers, right? 

Which is just to not be scared of this idea of having to hire people or having strangers or feeling like it's all your own responsibility to do it, which I think a lot of wives in particular often feel that way. Um, you know, just culturally, obviously we have this kind of expectation that women will do these things, caregiving rules. 

That's often my advice, but it's so inaccessible for people because it's not covered by health insurance. It's not covered by Medicare. Very little is covered by Medicaid. That's why that's something that I've kind of focused on thinking about advocacy moving forward. Yeah. Um, I mean, I think another piece of advice. 

Which is really hard to take, um, is just to be like very forgiving of yourself. There will be obviously really hard moments and there's such a wide range of emotions that people will experience and like that's, that's okay.  

[00:25:34] Sarah Cavanaugh: I'm reminded, so I took care of a woman in her nineties, her husband had passed away, but she took care of him in a wheelchair. 

He had a massive stroke and she had been caregiving for him for years, like 12 years because he'd asked her to, and she felt so responsible to take care of him and his every need, but she ended up in the hospital because she was lifting him into the bathtub. Just the physical requirements alone. Did you find that difficult or did you have caregivers by the time he needed to be lifted? 

[00:26:09] Rachael King: Um, I did. Yeah. So. A real turning point in feeling like we needed full time care. I was actually pregnant with our daughter, um, and so we had spent a long time kind of thinking about whether we wanted to have a second baby and then we were deciding to go for it. And overnight, Ady was sleeping in his recliner chair. 

What would happen is he would sort of like sink down into the chair and like not be able to readjust himself and so I would need to come behind him and kind of yank him up back into the chair. So it wasn't like lifting him but it was pulling him and he asked me to do it and I said I don't know if I should do that. 

But I did, and the next day I had some really bad spotting and it was, I really freaked out. I thought I was having miscarriage, which I had had before, which was why I was so worried about it. Um, and I went into the doctor and everything was fine, but it was obviously really scary. And he felt so guilty that he had asked me to do it. 

Yeah, that was a moment where we were like, I can't do this anymore if I'm gonna like, both be pregnant, taking care of a three year old, and then doing this overnight is just not doable. We also realized over time that he had lost way too much weight. Because at dinner, I would be trying to feed our toddler, you know, try to get him to eat and then trying to feed Ady at the same time. 

And I was trying to cook mushy foods that would be easier for Ady to eat and swallow, and so they might not have been like super protein rich, and he just wasn't eating enough. I think that that did kind of help me with the guilt in a way, to say like, I actually can't do this, you know, like you think that you can just be like, Oh, yeah, I'll just add this. 

I'll just add another thing. It's okay. And, you know, it's not safe for everyone. So, yeah, I mean, I think that did sort of show like, well, we actually really need this extra help.  

[00:28:12] Sarah Cavanaugh: That paints a very vivid picture, trying to feed both of them.  

[00:28:16] Rachael King: Yeah, and he, you know, and he gained a lot of weight back after we had the caregivers, which was so good for his long term health. 

[00:28:23] Sarah Cavanaugh: Did you ever just laugh at the absurdity of it all? What was happening to you at such a young age?  

[00:28:29] Rachael King: Yeah, absolutely. I think that you have to have a lot of humor in ALS. It is a very undignified disease and requires a lot of hands on assistance. You know, Ady was not, it didn't really bother him. that much, that, that kind of aspect of it. 

Of course, he would rather not have to have someone help him go to the bathroom and that sort of thing, but for a lot of people, that's a real challenge. So yeah, we had a lot of humorous times just laughing at how absurd it was. Yeah.  

[00:29:07] Sarah Cavanaugh: So you're writing a book about community and caregiving. With your lived experience with ALS as a jumping off point, what can you share about your book? 

[00:29:17] Rachael King: I'm working on a book that is sort of a blend of memoir and history of families and family arrangements and caregiving, like the ways that people have kind of organized to take care of each other, both at different historical moments, but also different visions of that in our own moment. I've been working on a chapter that kind of jumps off actually from our own house and thinking about our place and our home here in Santa Barbara and the way that cities actually like enforce single family housing, create these kinds of Caregiving arrangements that are not as available to a more intergenerational or communal kind of living. 

And the way that just that kind of architecture creates these different modes of caring for each other and thinking about what a family is and how families are interconnected or kind of like separated into nuclear families in the way that our society often thinks about it.  

[00:30:23] Sarah Cavanaugh: That's fascinating talking about the built environment and how that impacts our communities. 

[00:30:28] Rachael King: Yeah, I think it's one of those things that's strangely invisible to us, like even though obviously all around us, but we don't often think about like, well, why do we live in these particular kinds of houses? I'm kind of trying to make that visible and to show how it has all of these impacts, even on things like family arrangement and, and caregiving. 

[00:30:49] Sarah Cavanaugh: That sounds fabulous. Thank you for writing that. Thanks. I wonder if there's ways with the kids, you keep him alive now that he's gone physically. Are there ways that you talk about him or how do you keep him alive in, in their lives now?  

[00:31:04] Rachael King: Yeah, it's definitely something I've thought about a lot and, you know, of course we're still in this pretty recent mode. 

But particularly at first, I wanted the kids to see me crying and to see me when I was upset and to say like, this is normal, like, if you guys want to cry, that's fine. And like, obviously they would at times, but to just really not be like We're moving on, right, because we're not, and we're not going to for a long time. 

But just to, to sort of show, like, I'm also feeling very upset about this. But whenever I'm thinking about Ady or whenever something reminds me of him, I'll just say that and be like, Abba really, we called him Abba. You know, Abba really loved this song or like, this is something that Abba and I did together. 

Last night, Carl was saying something about Well, actually it was funny. We were reading a book, a kid's book, but it's about bodies and disability. And in one of the pictures, there's a wheelchair adapted swing. And Willow says, Oh, we should get one of those for Abba. And Carl was like, well, Abba's not here anymore, so we don't need that. 

And I said, well, yeah, he's not here, but he'll always be your dad and he'll always love you. So I think just trying to like engage with them in those moments when they do bring it up, but then just leave it on their own prompting has kind of been what I've been doing. I think it was really useful to them to have the big memorial and to go to that and sort of see people talking about him, you know, and both like friends, but then also colleagues and people he worked with. 

that was really nice for them to have a moment to just like reflect on all of that. So yeah, I think we try to keep him alive in, in various ways, more in those kind of like day to day moments, I think is, is how it comes out.  

[00:33:03] Sarah Cavanaugh: I really admire that. And I admire that you're not just shutting the conversation down, you know, you're really engaging with them. 

It's so wise. One of the things we talk about is like planning for your end of life and I wonder if you had any conversations with Ady before he died about kind of what he wanted at the end of his life.  

[00:33:23] Rachael King: In a way we did, but then in another strange way we hadn't. Again, with ALS being so progressive, we assumed that what would happen is that he would get to a point where he couldn't move his eyes anymore and therefore couldn't control his computer screen to be able to communicate with people. 

And that was the hard line for him, right? Like he didn't want to stay here if he couldn't communicate. So we knew that, and in a way that, that was really helpful to know that, because what happened in the end was that he went into cardiac arrest, he was out for more than 10 minutes, and so even though they revived him, he was never responsive. 

And so it, you know, you know, obviously it was such a difficult decision, you know, when do we end life support, but it made it a little easier to be able to say like, I know this about Ady, like, He wasn't brain dead. He had some brain signals. He wasn't, he wasn't responding at all. But, you know, even if he recovered a little bit, like he's never going to be able to communicate with us again. 

And I know that that's like his line, you know, that did help. And we had sort of, at one point, I think, talked about a spot where he would like his ashes to be scattered. So I knew that he wanted to be cremated. We actually haven't scattered the ashes yet. We have them still, and we'll do that at some point. 

We hadn't talked about things like a memorial or that sort of thing. I think he would have liked the memorial that we did, which was sort of a combination of funeral, but then also a celebration and thinking about his work and how to kind of continue that going forward. But yeah, we had talked about some things, but not other things. 

Frankly, there's a lot more we could have done logistically to deal with finances and the house and also, you know, like there's the paperwork is absolutely endless when someone passes away and I'm not at the end of it. It's, you know, I'm still waiting through. So I think that we could have done more with that, but I think for anyone, but particularly, you know, if you're in this kind of situation, it's really important to have that conversation and it's hard to have, but about like, when would this not be worth it for you? 

And what are the kind of lines and quality of life that you're.  

[00:35:50] Sarah Cavanaugh: Yeah, we talk about a letter of intent and it really does identify what is the tipping point for you. What is that, what is that place where it's like, I don't want to be here anymore. Um, and it, everyone's different. Everyone has a different tipping point. 

[00:36:03] Rachael King: Yeah.  

[00:36:04] Sarah Cavanaugh: And it might, and it might change in the moment, you know?  

[00:36:07] Rachael King: Yeah. Yeah. For a lot of people with ALS, it is the tracheostomy. Like they don't want to be on a breathing machine. And so they don't have a tracheostomy. For Ady, it was different, but I did know like where the line was.  

[00:36:21] Sarah Cavanaugh: Well, given that you're still doing paperwork following this, how has your grief kind of evolved over the last few months? 

[00:36:31] Rachael King: Yeah, I think it's like really up and down. And I think that I kind of knew that going in. And so I wasn't really expecting it to be like, well, today will be better than yesterday. And that'll just kind of continue on. I think that there are days that feel pretty normal and then. There are days that are harder and then sort of in between, you know, it was like this morning I was at Target and I can't even remember what exactly, but something just reminded me of Ady and then I was like thinking about some, um, something that we did together and kind of remembering that, um, and so I think that's just like really constant, that kind of presence, um, I'm constantly seeing things like news stories or, you know, TikToks or something that I want to show him and I'd be like, Oh, Ady would love this. 

I wish I could show this to him. Yeah. I mean, and I think that I kind of like that actually, that it's like, there's still a big presence in your life despite not being here. So yeah, I think I'm just sort of like seeing how things unfold. The immediate aftermath, you know, obviously is so intense and so overwhelming, like the first probably month, um, of just feeling like, you know, all you can kind of think about is this thing that happened and it doesn't seem like that's going to change. 

And then it gradually does change, but It's not in a way of like moving on or getting better. It's just like here's a different way to kind of relate to what happened.  

[00:38:14] Sarah Cavanaugh: Yeah. How are your kids now?  

[00:38:17] Rachael King: They're doing pretty well overall. Again, they also have ups and downs. Like, I think, you know, my son, At first he was having a lot more reaction of, of sort of like anger, and there was a lot of that, and then lately it's been more sadness, and he has been saying more like, I wish we had a dad, and I think that's a big thing for him, probably especially as a boy, and You know, and I think for Willow, it's um, it's hard to know, so she's only four still, and it's hard to know how much she understands of the kind of like permanence, right? 

And like even the thing she said about like, well, we should get the swing for Abba. Yeah, that's, that's a great thought. Um, and so yeah, I think for her, it's like kind of comes and goes, how permanent the loss is, but she and Audie were really close. They had a very, very sweet, cute relationship. Yeah, I mean, I know that she really feels the loss, but it's, it's a little unclear, like, how she's experiencing that. 

Um, we actually, this last week, we got two kittens because, you know, it's like, it's not funny, but anyway. Our cat also died in December. So right after Ady died, we had to put our cat to sleep, who was almost 17 years old. Ady and I first got her and her brother when we were living in Connecticut a long time ago. 

And so we had been talking about getting new kittens, which we just did last week, which has been really wonderful. They're adorable and so sweet and playful. But that too, I think it has brought up for everyone like that Ady doesn't get to see the kittens and like it's sort of this thing we're doing without him. 

Yeah, even though they're not really expressing it in that way, there are sort of some ways that I see that coming out.  

[00:40:14] Sarah Cavanaugh: Yeah, for you especially.  

[00:40:17] Rachael King: Yeah, yeah.  

[00:40:19] Sarah Cavanaugh: So if someone wants to get involved with healthcare advocacy and be a hero, tell us a little bit about be a hero and how someone would sign up.  

[00:40:28] Rachael King: Be a Hero has a variety of events that it does from time to time that are invested in hearing people's stories and using those stories in a more public way. 

Probably the best way to get information is to follow Be a Hero on Twitter slash X. That's a good way to just see like what the organization is doing and then there'll be information about webinars or smaller meetings where members of the group are getting together and talking about these kinds of stories that could be shared. 

Right now they're working on a campaign about Medicare Advantage, which is this effort to privatize Medicare that's been going on. So thinking about the negative experiences people have had with Medicare Advantage. I mean, I think more generally, you know, it's kind of usual things that people say, like, call your senator, call your representative. 

[00:41:19] Sarah Cavanaugh: Yeah. Well, thank you so, so much. So there's a question I ask all of my guests. Given your experience and now being a single parent and acutely aware that you have experienced this end of life with Audi. What does a peaceful exit mean to you?  

[00:41:38] Rachael King: I think a peaceful exit to me would really depend on feeling like I had communicated everything I wanted to, to the people that I was closest to. 

That is part of what's really hard when something is sudden. And so like, obviously, although Ady and I had talked about a lot of things and had considered this issue for a long time, there's definitely still a lot of things I feel like I wish I had told him or I could tell him now. That's really key is just knowing that people know what you want to tell them. 

[00:42:17] Sarah Cavanaugh: Yeah. Yeah. Well, thank you so, so much for this time. It's been an honor to talk to you and hear about your experience and I just want to thank you.  

[00:42:31] Rachael King: Thank you so much. This is really wonderful. 

[00:42:37] Sarah Cavanaugh: for listening to Peaceful Exit. I'm your host, Sarah Cavanaugh. You can learn more about this podcast at And you can find me on LinkedIn, Facebook, and Instagram @apeacefulexit. If you enjoyed this episode, please let us know. You can rate and review this show on Spotify and Apple Podcasts. 

This episode was produced by the amazing team at Larj Media. You can find them at The Peaceful Exit team includes my producer, Katy Klein, and editor, Corine Kuehlthau. Our sound engineer is Shawn Simmons. Tina Nole is our senior producer and Syd Gladu provides additional production and social media support. 

Special thanks to Ricardo Russell for the original music throughout this podcast. As always, thanks for listening. I'm Sarah Cavanaugh, and this is Peaceful Exit. 


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