WEBVTT - Part 1: A Million Little Losses 0:00:14.956 --> 0:00:23.476 Pushkin Hay Slight Changers. This is part one of two 0:00:23.556 --> 0:00:27.916 conversations I've had with writer Kelsey Snow. It was recorded 0:00:27.996 --> 0:00:40.476 in late September of twenty twenty three. 0:00:40.716 --> 0:00:42.996 I was twenty one and I was in love. And 0:00:43.556 --> 0:00:45.476 think about how you felt when you were twenty one. Right, 0:00:45.516 --> 0:00:48.436 there's nothing stopping you. You feel invincible. You don't think 0:00:48.556 --> 0:00:50.356 anything but good things are going to happen to you. 0:00:51.156 --> 0:00:55.276 When Kelsey first met Chris, she fell hard. They soon 0:00:55.316 --> 0:00:58.876 fell in love, got married, and had two kids. But 0:00:58.956 --> 0:01:02.716 then Chris received a devastating diagnosis. 0:01:03.036 --> 0:01:04.876 You have to learn to live while the person you 0:01:04.916 --> 0:01:07.356 love is dying, and nobody wants to believe that that 0:01:07.356 --> 0:01:12.556 could happen to them. 0:01:12.676 --> 0:01:16.476 On today's episode, the complex grief of being a caregiver, 0:01:18.476 --> 0:01:21.476 I'm Maya Shunker and this is a slight change of plans, 0:01:21.876 --> 0:01:24.156 a show about who we are and who we become 0:01:24.396 --> 0:01:38.956 in the face of a big change. Kelsey's husband, Chris Now, 0:01:39.556 --> 0:01:43.156 was thirty seven years old when he was diagnosed with ALS, 0:01:43.556 --> 0:01:50.116 a progressive neurodegenerative disease. ALS can leave people unable to move, talk, eat, 0:01:50.156 --> 0:01:53.316 and breathe on their own, and it currently has no cure. 0:01:54.316 --> 0:01:58.796 Kelsey would later become Chris's full time caregiver. Kelsey has 0:01:58.876 --> 0:02:02.396 chronicled her family's experience in a podcast she hosts called 0:02:02.636 --> 0:02:06.476 Sorry I'm Sad. That's how I first came across her story, 0:02:06.996 --> 0:02:08.956 and I was drawn to her warmth and her ins. 0:02:10.396 --> 0:02:13.196 I reached out to Kelsey over Instagram and over the 0:02:13.276 --> 0:02:16.556 years we struck up a friendship. I'm honored that she 0:02:16.676 --> 0:02:18.756 was willing to share her story with all of us. 0:02:20.116 --> 0:02:22.996 Kelsey first met Chris when she started her internship in 0:02:23.036 --> 0:02:26.676 the sports department at the Boston Globe. Chris was the 0:02:26.676 --> 0:02:29.876 Red Sox beat writer, and he would offer her rides 0:02:29.916 --> 0:02:32.156 to Fenway, the Red Sox ballpark. 0:02:32.556 --> 0:02:35.116 He'd text me if I was working there that day, 0:02:35.156 --> 0:02:37.036 and he'd say, do you want to ride? And my 0:02:37.116 --> 0:02:39.836 friend Adam said, snow never gives me a ride to Fenway. 0:02:41.236 --> 0:02:44.836 That's what I thought, Oh, yeah, maybe he likes me. 0:02:45.836 --> 0:02:49.156 He invited me to go to the gym after we'd 0:02:49.156 --> 0:02:51.076 been at Fenway, and then we went and got like 0:02:51.116 --> 0:02:54.996 smoothies or something, and at one point we were in 0:02:55.036 --> 0:03:01.356 his apartment and he said, well, I like, you know whatever, 0:03:01.436 --> 0:03:07.316 you I said, what, And so then of course I 0:03:07.396 --> 0:03:12.716 decided i'd like to marry him. I think I probably 0:03:12.756 --> 0:03:13.836 knew at that point. 0:03:14.996 --> 0:03:17.756 About a month into getting to know Chris, he mentioned 0:03:17.796 --> 0:03:21.476 to you that he had a family history of Alaska. 0:03:21.996 --> 0:03:24.436 Tell me how that conversation played out. 0:03:24.716 --> 0:03:27.396 He had had one uncle at that point who had 0:03:27.436 --> 0:03:30.716 died of ALS a couple years before I met him. 0:03:31.196 --> 0:03:34.156 Ten to fifteen percent of ALS is genetic, the rest 0:03:34.156 --> 0:03:38.396 of it is sporadic. And I remember him telling me 0:03:38.476 --> 0:03:41.916 that and saying that at that point, I think his 0:03:42.036 --> 0:03:45.236 dad had had the genetic tests, and his dad knew 0:03:45.316 --> 0:03:51.196 that he had the genetic mutation. And I just think 0:03:51.276 --> 0:03:54.476 I was twenty one and I was in love, and 0:03:55.836 --> 0:04:00.036 I do think I misunderstood a little bit the implications 0:04:00.076 --> 0:04:03.436 of having the genetic mutation. It's a fifty to fifty chance, 0:04:03.436 --> 0:04:05.476 it's a coin flip whether it has passed on to 0:04:05.516 --> 0:04:08.796 you from your parent. But if you have the genetic mutation, 0:04:09.236 --> 0:04:12.276 almost one hundred percent chance interesting that you will have 0:04:12.516 --> 0:04:16.636 ALUs become symptomatic at some point in your life. That's 0:04:16.676 --> 0:04:18.236 the part I didn't really understand. I don't know if 0:04:18.276 --> 0:04:21.316 he really understood it at that point either. Think about 0:04:21.356 --> 0:04:23.036 how you felt when you were twenty one, right there's 0:04:23.076 --> 0:04:26.356 nothing stopping you. You feel invincible. You don't think anything but 0:04:26.436 --> 0:04:27.676 good things are going to happen to you. 0:04:28.236 --> 0:04:32.156 Yeah. So let's move forward in time to twenty nineteen. 0:04:32.876 --> 0:04:35.316 You and Chris are married, You have two young children. 0:04:35.716 --> 0:04:38.956 He's thirty seven, you're thirty five. What were the first 0:04:38.996 --> 0:04:40.316 symptoms that he noticed? 0:04:41.236 --> 0:04:47.836 He started to have some like intermittent numbness in two 0:04:47.876 --> 0:04:49.396 fingers on his right hand. 0:04:49.476 --> 0:04:51.436 He's right handed, and. 0:04:52.916 --> 0:04:56.276 We sort of thought, well, that's not really how this 0:04:56.396 --> 0:05:00.956 disease presents. ALS is a process of elimination diagnosis. There's 0:05:00.996 --> 0:05:05.196 no test for it, and the doctors thought it was 0:05:05.276 --> 0:05:09.116 not ALS. They thought he had a pinched ulner nerve 0:05:10.396 --> 0:05:13.236 from just like the positioning of his arms and typing 0:05:13.276 --> 0:05:17.116 and working on his computer and things like that. We 0:05:17.196 --> 0:05:19.516 leaned very hard into that, hope. 0:05:19.956 --> 0:05:21.756 Yeah, what did that look like? The leaning and. 0:05:21.756 --> 0:05:26.756 Heart It looked like trying to match up every symptom 0:05:27.276 --> 0:05:31.036 with this. It looked like avoidant googling as well, like 0:05:31.076 --> 0:05:34.876 there were certain things I wouldn't google. I would never 0:05:34.996 --> 0:05:38.316 google together the words pinched all their nerve and ALS 0:05:39.236 --> 0:05:42.076 because I didn't want to know whether it was a 0:05:42.116 --> 0:05:47.316 common sort of mistake misdiagnosis. Then I finally did that 0:05:47.636 --> 0:05:52.516 Google search, and the first study that popped up was 0:05:52.596 --> 0:05:55.436 a thirty something year old woman who doctors thought had 0:05:55.556 --> 0:06:00.956 pinched all their nerve and ultimately they realized it was ALS. 0:06:01.796 --> 0:06:07.396 And the study it was two paragraphs. You know, patient 0:06:07.476 --> 0:06:10.956 died shortly after Oh gosh. And so there are a 0:06:10.956 --> 0:06:13.156 couple of tests that you can do that are really 0:06:13.876 --> 0:06:16.076 hallmarks for this disease. And one is a test where 0:06:16.116 --> 0:06:19.916 they put needles into your muscles and they gauge the 0:06:19.956 --> 0:06:24.476 way your nerves are interacting with your muscles. And this 0:06:24.596 --> 0:06:27.356 doctor just did test and didn't say a word, and 0:06:27.436 --> 0:06:30.876 afterward finished and said, I think you have some form 0:06:31.396 --> 0:06:37.316 of motor neuron disease. And then your world is just 0:06:37.476 --> 0:06:41.956 poof wow gone. Yeah. 0:06:41.996 --> 0:06:44.276 So you ended up flying to Miami to get an 0:06:44.316 --> 0:06:48.676 expert opinion, and the doctor there says it is, in 0:06:48.716 --> 0:06:52.516 fact the very early stages of ALS. It's fatal, it's 0:06:52.556 --> 0:06:56.636 fast moving, and it's the same type of ALS that 0:06:56.756 --> 0:07:00.196 runs in Chris's family, right. It actually had killed four 0:07:00.316 --> 0:07:05.076 of Chris's family members. I mean, what did it feel 0:07:05.156 --> 0:07:06.836 like to hear that news. 0:07:07.516 --> 0:07:08.476 Stick to my stomach? 0:07:10.116 --> 0:07:12.116 And then you have to figure out how to make 0:07:12.156 --> 0:07:16.596 life possible still when you know, we thought that Chris 0:07:16.676 --> 0:07:20.956 was going to die and die quickly, and our kids 0:07:20.956 --> 0:07:21.276 were so. 0:07:21.316 --> 0:07:23.716 Little, and how do you tell them that? 0:07:23.916 --> 0:07:29.796 And yeah, it was very that was very hard, and 0:07:29.876 --> 0:07:31.956 I think you I felt like people don't want to 0:07:31.956 --> 0:07:35.556 believe you, Like there's not a way out of this disease. 0:07:36.196 --> 0:07:36.676 There's not. 0:07:38.116 --> 0:07:40.436 There's not a treatment for this, right, And so in 0:07:40.476 --> 0:07:42.276 my mind, I thought, you know, I kind of have 0:07:42.396 --> 0:07:46.516 to convince people this is not gonna especially my family. 0:07:46.516 --> 0:07:49.916 You know, my mom, she's scared that I'm gonna She's like, no, 0:07:50.316 --> 0:07:51.556 that can't be right, you know. 0:07:52.276 --> 0:07:54.236 Yeah, and it's no, it's right. 0:07:55.876 --> 0:07:59.876 The doctors told you at that point that Chris's life 0:07:59.916 --> 0:08:05.156 expectancy was somewhere between six and eighteen months. That there 0:08:05.196 --> 0:08:06.796 was a bit of good news in there, which is 0:08:06.836 --> 0:08:10.836 the doctor also said there was a new clinical trial 0:08:10.956 --> 0:08:13.996 that Chris might be eligible to join. Can you tell 0:08:13.996 --> 0:08:16.516 me more about that. 0:08:16.516 --> 0:08:19.556 That is not a typical situation for an als patient. 0:08:19.836 --> 0:08:22.236 Clinical trials are very hard for people to find, and 0:08:22.316 --> 0:08:25.116 oftentimes it's taken them so long to be diagnosed that 0:08:25.196 --> 0:08:27.636 they fail the screening because maybe their breathing is already 0:08:27.676 --> 0:08:32.316 too poor or something like that. So I always say like, 0:08:32.796 --> 0:08:37.876 we won the shit luck lottery. And we left Miami thinking, 0:08:38.316 --> 0:08:40.196 you know, maybe Chris will be the first person to 0:08:40.236 --> 0:08:41.196 survive this disease. 0:08:42.836 --> 0:08:46.796 So how did Chris end up responding to the clinical trial? 0:08:47.156 --> 0:08:49.196 So Chris started in the clinical trial of July of 0:08:49.196 --> 0:08:51.876 twenty nineteen, and so we lived in that little bubble 0:08:51.916 --> 0:08:54.676 for nine months where he really didn't have any progression 0:08:55.676 --> 0:09:00.196 at all, and we kind of moved along in that 0:09:00.276 --> 0:09:05.436 space until April. It's that still sledding season in Canada. 0:09:05.556 --> 0:09:09.316 So we were out snow sledding and our daughter had, 0:09:09.436 --> 0:09:11.076 I don't know, fallen or something. She had a bunch 0:09:11.076 --> 0:09:13.556 of snow in her helmet and I wanted to take 0:09:13.556 --> 0:09:16.356 a picture of them, and I said, he smiled, and 0:09:16.356 --> 0:09:18.636 I had my phone out and I took the picture 0:09:18.716 --> 0:09:19.876 and I looked at it and I was like, you're 0:09:19.876 --> 0:09:22.236 making a weird face to Chris. I said, you're making 0:09:22.276 --> 0:09:25.356 a weird face. Let's take another one. So I did 0:09:25.396 --> 0:09:29.116 it again and I said, you're still making a weird face. 0:09:30.276 --> 0:09:33.036 And then I said one more. I took it again 0:09:34.076 --> 0:09:38.076 and I went, oh shit, and yeah, I just had 0:09:38.076 --> 0:09:43.356 this little droop on one side of his smile, and 0:09:43.396 --> 0:09:48.556 that was like being diagnosed all over again, because we 0:09:48.676 --> 0:09:50.756 thought maybe we would just stay the way we were. 0:09:52.876 --> 0:09:55.356 When did you tell Chris that? Or did you tell 0:09:55.436 --> 0:09:58.636 Chris that day? Because you have this information you were 0:09:58.636 --> 0:10:01.756 carrying in your brain taking this photo, I'm presuming you 0:10:01.756 --> 0:10:03.516 didn't share that in front of your fan, like your 0:10:03.596 --> 0:10:05.516 kids and him in that moment. 0:10:05.356 --> 0:10:06.996 I think it was more of like we looked at 0:10:07.036 --> 0:10:10.796 each other, like I show the photo, and we just 0:10:10.836 --> 0:10:13.956 sort of looked at each other and knew okay, and 0:10:13.996 --> 0:10:17.596 we walked home then pulled the kids on the sled 0:10:18.396 --> 0:10:21.796 with this like, you know, horrible feeling of dread. And 0:10:21.876 --> 0:10:25.396 so then it was just it was pretty quick the 0:10:25.596 --> 0:10:29.276 loss of his smile. And Chris had such a good smile, 0:10:30.356 --> 0:10:32.716 and everybody would comment on Chris's smile, everybody. I mean, 0:10:32.716 --> 0:10:34.556 he was little, his parents called him guy Smiley like 0:10:34.596 --> 0:10:36.596 he was not only did he have a beautiful smile, 0:10:36.636 --> 0:10:39.116 but he was always smiling. And you know, always see 0:10:39.516 --> 0:10:41.676 he works in professional sports, so in a team picture, 0:10:42.436 --> 0:10:45.236 while these guys were very serious, and Chris was always 0:10:45.676 --> 0:10:50.516 you know, huge white teeth, big smile, showing happy, just 0:10:50.556 --> 0:10:57.556 a happy guy, positive, optimistic, and whether he remained those 0:10:57.556 --> 0:11:00.836 things or not, it didn't come across that way because 0:11:00.876 --> 0:11:03.476 now he'd had no facial expressions. I mean, not only 0:11:03.476 --> 0:11:07.276 could he not smile, he all of his facial muscles 0:11:07.276 --> 0:11:11.676 atrophied pretty much completely. He can't blink. He can open 0:11:11.676 --> 0:11:13.396 his eyes, but he can't close them all the way. 0:11:13.676 --> 0:11:16.836 He can't raise his eyebrows, he can't make facial expressions 0:11:16.916 --> 0:11:17.276 at all. 0:11:18.196 --> 0:11:22.516 Yeah, when you think about smiling in the context of 0:11:22.556 --> 0:11:26.796 everything else, als can rob a persona that can seem trivial. 0:11:26.956 --> 0:11:31.436 But I know from reading your work and listening to 0:11:31.476 --> 0:11:36.876 interviews with you, this was a massively painful loss. 0:11:37.316 --> 0:11:41.316 Yeah, it's very hard, whether you want to believe it 0:11:41.396 --> 0:11:43.756 or not. You often end up assuming the worst in 0:11:43.756 --> 0:11:46.596 that person's mood. And I'm an adult and I have 0:11:46.676 --> 0:11:49.356 a hard time with that. So then you know that 0:11:49.716 --> 0:11:51.156 is even more difficult. 0:11:50.756 --> 0:11:51.316 For our kids. 0:11:52.116 --> 0:11:54.716 Yeah, meaning you assume that Chris is in a bad 0:11:54.756 --> 0:11:56.516 mood when he might very well not be. He's just 0:11:56.556 --> 0:11:57.996 not able to show you his joy. 0:11:58.156 --> 0:12:01.316 Yeah, or are you tired or do you feel off today? 0:12:02.516 --> 0:12:07.956 Because he can't show me a different feeling and no, 0:12:08.116 --> 0:12:12.676 his smile, I don't know how you can rank like 0:12:12.716 --> 0:12:14.356 the hard parts of this, but. 0:12:16.196 --> 0:12:18.116 I think a lot. I just wish you could still smile. 0:12:22.356 --> 0:12:24.476 We'll be back in a moment with a slight change 0:12:24.476 --> 0:12:41.356 of plans. A few months after the sledding photo, Chris 0:12:41.396 --> 0:12:44.356 told Kelsey he was experiencing a new symptom. 0:12:44.876 --> 0:12:47.756 He told me that he had noticed that he sometimes 0:12:47.796 --> 0:12:51.276 had to swallow twice. It's called double swallowing, which is 0:12:51.276 --> 0:12:55.876 a very common first symptom that an als patient is 0:12:55.916 --> 0:12:58.876 losing their ability to swallow or having progression, and they're 0:12:58.876 --> 0:13:04.996 swallowing muscles. So he's losing his smile. He's losing his 0:13:05.076 --> 0:13:11.796 ability to swallow. That fall of twenty twenty was incredibly 0:13:11.796 --> 0:13:14.556 hard for our family. We had some choking things. It 0:13:14.596 --> 0:13:17.876 was quite traumatic for our kids. For me, they got 0:13:17.916 --> 0:13:20.276 to the point where every single day we were taking 0:13:20.316 --> 0:13:23.316 something off the list of foods that he could eat. 0:13:24.276 --> 0:13:26.996 He was losing weight. He was really. 0:13:26.716 --> 0:13:29.516 Spending six hours a day trying to consume enough food 0:13:29.556 --> 0:13:32.916 to not lose weight. And in late November of that 0:13:32.996 --> 0:13:37.276 year he got a feeding tube, which was revolutionary for us, 0:13:37.316 --> 0:13:40.756 and he did very well with the feeding tube. Pe 0:13:40.836 --> 0:13:43.236 gained a bunch of weight back. It was going really well, 0:13:44.116 --> 0:13:48.196 and then he started to reflux stomach contents and then 0:13:48.276 --> 0:13:53.356 aspirate it. So an aspiration event is basically anytime you say, oh, 0:13:53.356 --> 0:13:57.916 that went down the wrong way, you aspirated. So when 0:13:57.916 --> 0:14:01.996 you're swallowing, muscles weaken, you're more likely to get things 0:14:01.996 --> 0:14:04.996 in your lungs, whether it's water or food, And anytime 0:14:05.036 --> 0:14:07.156 you get something in your lungs, there's a risk of 0:14:07.156 --> 0:14:08.356 you developing an ammonia. 0:14:09.396 --> 0:14:10.836 And over a. 0:14:10.796 --> 0:14:13.796 Period of thirteen months, he was in the hospital eight 0:14:13.836 --> 0:14:19.356 times with aspiration events and that got very, very scary 0:14:19.396 --> 0:14:23.876 for us. It spiraled pretty quickly to the point where 0:14:24.196 --> 0:14:26.876 he was admitted to the ICU. He ended up on 0:14:27.796 --> 0:14:32.356 a ventilator two times, and he had a bacterial. 0:14:31.916 --> 0:14:34.236 Pneumonia, a viral pneumonia. 0:14:33.996 --> 0:14:36.476 Influenza A, and a staff infection. He was in the 0:14:36.636 --> 0:14:41.236 ICU for two weeks. And when he went into the ICU, 0:14:41.556 --> 0:14:44.356 he could drive, he could go to work by himself, 0:14:44.436 --> 0:14:47.756 he could do everything he needed to do. And when 0:14:47.756 --> 0:14:50.716 he got out of the ICU, he went from being 0:14:50.796 --> 0:14:54.156 I would say ninety percent independent before to one hundred 0:14:54.156 --> 0:14:57.556 percent dependent on me after the ICU, and that never changed. 0:14:58.316 --> 0:15:01.276 He can type with two fingers on his left hand, 0:15:01.436 --> 0:15:03.476 and that's how he works. He still works full time, 0:15:04.236 --> 0:15:07.916 but it went from him doing almost everything by himself 0:15:08.516 --> 0:15:12.156 to any single thing you do in a day, zipping 0:15:12.236 --> 0:15:16.316 up your hoodie, going to the washroom, washing your hair 0:15:16.476 --> 0:15:19.836 or your body in the shower, arranging your blankets in bed, 0:15:21.436 --> 0:15:23.676 you name it, I do it for him. 0:15:26.516 --> 0:15:28.356 You know, you were already in the mode of caregiving, 0:15:28.436 --> 0:15:32.716 obviously raising two young kids when this all started. And 0:15:34.516 --> 0:15:36.956 what was it like to take on this new identity 0:15:37.036 --> 0:15:39.676 of caregiver for your young spouse? 0:15:41.156 --> 0:15:46.716 Yeah, in his early forties. Yeah, Yeah. 0:15:46.836 --> 0:15:51.716 I remember having conversations with my friend Sondra because her 0:15:51.756 --> 0:15:56.116 husband was more progressed than Chris, and I remember her 0:15:56.396 --> 0:15:58.236 talking about caregiving. 0:15:59.716 --> 0:16:02.396 In a way that felt like, I hope that's not true. 0:16:02.596 --> 0:16:05.756 I hope I hope that I don't find it as 0:16:05.796 --> 0:16:07.836 awful as she's finding it. 0:16:08.756 --> 0:16:11.876 But it it is. It is awful. It's horrible. 0:16:11.956 --> 0:16:15.516 Yeah, that's not the right word caregiving. 0:16:17.396 --> 0:16:19.876 I would find it completely excruciatingly horrible. 0:16:19.916 --> 0:16:21.236 Okay, for what it's worth, it is. 0:16:21.876 --> 0:16:23.476 You don't want to say that because it's your person, 0:16:23.996 --> 0:16:25.076 but it's okay to say that. 0:16:25.156 --> 0:16:26.876 Kelsey. Yeah, it's so hard. 0:16:27.636 --> 0:16:30.396 You can't be a wife and a caregiver at the 0:16:30.436 --> 0:16:33.676 same time. So they just this person just starts to 0:16:33.716 --> 0:16:38.476 be a patient for you, you know, in. 0:16:38.436 --> 0:16:47.236 The real, true sense of like being totally open about this. 0:16:47.316 --> 0:16:49.956 You start to like dreave coming home because you know 0:16:49.996 --> 0:16:52.356 they're going to ask you for all the things they've 0:16:52.356 --> 0:16:54.956 been waiting to have done, you know, and they're not. 0:16:55.036 --> 0:16:57.116 It's not like they're asking you for extra things, but 0:16:57.116 --> 0:17:00.436 they need help with everything. And we don't have any 0:17:00.436 --> 0:17:03.516 family here, so I have, you know, I have some 0:17:03.716 --> 0:17:06.196 wonderful friends, but it's not we know, that's not the 0:17:06.236 --> 0:17:09.956 same thing as family. Our son just turned twelve, our 0:17:09.996 --> 0:17:12.556 daughter turns nine at the end of this month. They're 0:17:12.636 --> 0:17:15.676 very busy. I'm the only driver in my house. I 0:17:15.756 --> 0:17:18.556 am trying to get you know, dinner ready, which I'd 0:17:18.596 --> 0:17:24.956 hardly ever cook anymore. It's so consuming, it is so draining, 0:17:25.996 --> 0:17:30.956 and a huge part of it is feeling like nobody 0:17:31.076 --> 0:17:35.996 is taking care of you, and there's all sorts of 0:17:35.996 --> 0:17:39.596 complicated emotions involved in it. You can't say to somebody, 0:17:39.596 --> 0:17:42.716 this is going to get better, because what does that 0:17:42.796 --> 0:17:46.276 mean if my responsibility is as a caregiver giveitter. 0:17:46.596 --> 0:17:47.156 That's because my. 0:17:47.236 --> 0:17:55.756 Husband has died, so caregiving is very hard. It's hard 0:17:55.796 --> 0:17:58.676 on everybody, and I think that a lot of things 0:17:58.716 --> 0:18:01.756 can be true. At the same time, I remember before 0:18:02.516 --> 0:18:05.036 I really was actually being a caregiver for Chris, saying 0:18:05.076 --> 0:18:07.796 like it's an honor to care for Chris. And I've 0:18:07.796 --> 0:18:09.956 thought about that a lot, sort of like, oh, you're 0:18:10.836 --> 0:18:14.196 fucking idiot, Kelsey, you know, to say that out loud 0:18:14.276 --> 0:18:15.236 because you didn't get it. 0:18:15.716 --> 0:18:19.756 And at the same time, it is. 0:18:21.756 --> 0:18:25.276 You know, you've written about feeling resentment as a caregiver, 0:18:25.836 --> 0:18:30.636 and yeah, just talk to me about that feeling. I mean, 0:18:30.636 --> 0:18:31.716 how do you engage with it. 0:18:34.076 --> 0:18:41.756 I'm not jealous of Chris, obviously, but I'm jealous maybe 0:18:41.796 --> 0:18:44.956 of the fact that he has somebody who cares for 0:18:45.036 --> 0:18:48.676 him like I do. So I do have resentment, but 0:18:49.996 --> 0:18:52.436 you know, it's probably that I'm the only parent. It's 0:18:52.476 --> 0:18:55.356 that I'm I'm just the one who everything falls on. 0:18:55.996 --> 0:18:57.996 If the load of laundry needs to get done, if 0:18:58.276 --> 0:19:02.796 the toilet is clogged, if the lawn needs to be mowed, 0:19:02.956 --> 0:19:05.876 if the dishes are in the saink if whatever it is. 0:19:07.516 --> 0:19:11.396 Every single thing is on me, and oftentimes that also 0:19:11.396 --> 0:19:14.076 looks like the emotional labor of what's going on for 0:19:14.156 --> 0:19:18.236 my kids and their mental health, because this is not 0:19:18.396 --> 0:19:20.356 an easy thing for them either. 0:19:20.556 --> 0:19:20.916 You know, we. 0:19:22.476 --> 0:19:24.796 Feel very confident that Chris is going to live for 0:19:24.836 --> 0:19:27.356 a long time still, but they have a dad who 0:19:27.356 --> 0:19:30.236 can't play catch with them. They have a dad who 0:19:30.236 --> 0:19:33.596 can't coach their sports teams. They have a different dad, 0:19:34.356 --> 0:19:36.556 you know, a dad who is in the hospital a 0:19:36.596 --> 0:19:40.356 lot and misses their sports games because the rink is 0:19:40.356 --> 0:19:42.916 too cold and that's hard on his body or whatever 0:19:42.956 --> 0:19:45.516 it is. And so I feel the weight of that 0:19:45.716 --> 0:19:50.156 a lot. I had hit a very low point, probably 0:19:50.156 --> 0:19:53.236 my lowest point in the spring. I went into my 0:19:53.316 --> 0:19:56.556 therapist and I said, I'm just having a really hard 0:19:56.596 --> 0:20:01.156 time managing my stress. And I started to describe all 0:20:01.316 --> 0:20:04.076 all of these things to her that I was feeling, 0:20:04.116 --> 0:20:07.556 and she looked at me and she said, Kelsey, that's 0:20:07.636 --> 0:20:14.356 not stress anxiety, And she said, maybe you want to 0:20:14.396 --> 0:20:18.956 consider trying medication. And so in April I started taking 0:20:19.796 --> 0:20:25.156 Zoloft and did in the summer hire a caregiver who 0:20:25.356 --> 0:20:30.676 started in August, and that's been life changing. I left 0:20:30.716 --> 0:20:35.036 home one day and I came back and I don't 0:20:35.036 --> 0:20:37.076 have so many hours that I hadn't seen christ and 0:20:37.076 --> 0:20:39.676 also I hadn't been on call, because there's two different 0:20:39.676 --> 0:20:41.836 things with caregiving. When you're actively doing it and knowing 0:20:41.876 --> 0:20:43.556 that you're the one who has to do it at 0:20:43.556 --> 0:20:46.876 a moment's notice, both of the things are exhausting. And 0:20:46.956 --> 0:20:48.516 I walked in the door and I realized I had 0:20:48.596 --> 0:20:53.156 missed him and I hadn't missed him for months because 0:20:53.156 --> 0:20:55.116 I hadn't been a position too, because normally I'd walk 0:20:55.156 --> 0:20:58.036 in the door and feel dread. Now I've been gone, 0:20:58.076 --> 0:20:59.596 and now I'm going to have to do all of 0:20:59.596 --> 0:21:02.156 these things. But I walked in and our caregiver was 0:21:02.196 --> 0:21:07.316 with him. They were doing the things, and I was like, oh, 0:21:07.356 --> 0:21:12.476 that's right, you're my husband. And medication was the root 0:21:12.516 --> 0:21:15.476 of all of that, because the medication pulled me out 0:21:15.596 --> 0:21:19.076 of that sort of permanent fight or flight that I 0:21:19.116 --> 0:21:22.996 was in, and that was what allowed me to troubleshoot 0:21:23.036 --> 0:21:25.236 the things that were going on and say what else 0:21:25.276 --> 0:21:29.476 can I do here? Because I wasn't constantly, you know, 0:21:29.516 --> 0:21:33.876 in that anxiety fueled frenzy. 0:21:33.956 --> 0:21:36.116 You know, it strikes me that because the kind of 0:21:36.156 --> 0:21:39.476 grief you're facing isn't sudden, like what might accompany the 0:21:39.516 --> 0:21:43.596 death of a loved one, but instead it's the gradual 0:21:43.716 --> 0:21:47.036 loss of the Chris that you once knew that. There 0:21:47.036 --> 0:21:50.676 may be unique challenges associated with dealing with the situation 0:21:50.836 --> 0:21:55.036 like this in terms of the way that you process grief, 0:21:55.076 --> 0:21:57.196 the way that those around you process grief, And I'm 0:21:57.196 --> 0:21:58.996 wondering if you can reflect a bit on what it's 0:21:59.116 --> 0:22:01.996 like to handle that kind of grief situation. 0:22:02.836 --> 0:22:04.316 Yeah. 0:22:04.716 --> 0:22:08.876 I was messaging with a young mom in Ontario who 0:22:09.156 --> 0:22:11.476 whose husband has als and she has a toddler, a 0:22:11.516 --> 0:22:14.916 little girl, and we were talking about how we feel 0:22:14.916 --> 0:22:23.076 like grief misfits because we aren't widows, but we aren't 0:22:23.156 --> 0:22:28.356 like our friends, and it's this sort of weird middle space. 0:22:30.236 --> 0:22:31.756 I did a podcast episode with. 0:22:31.716 --> 0:22:34.676 A mom in my neighborhood who lived for about six 0:22:34.756 --> 0:22:38.676 years with metastatic breast cancer, and I remember her saying 0:22:38.796 --> 0:22:42.236 that the longer she lived, the more she felt like 0:22:42.316 --> 0:22:46.636 people would see her and be like, you're not dead yet. 0:22:47.956 --> 0:22:53.636 And it is very hard for people to look at 0:22:53.676 --> 0:22:57.716 a disease like this. They don't want to see prolonged suffering. 0:22:57.836 --> 0:23:00.636 They don't want to see that. You might have to 0:23:00.796 --> 0:23:04.996 learn how to live. You have to learn to live 0:23:05.036 --> 0:23:08.876 while the person you love is dying, and nobody wants 0:23:08.876 --> 0:23:13.476 to be that could happen to them, And so it 0:23:13.516 --> 0:23:16.396 is a very weird space for grief. And I feel 0:23:16.476 --> 0:23:19.076 like there are two sides to it. One is that 0:23:19.916 --> 0:23:23.156 you don't want people to forget about you, that you're 0:23:23.196 --> 0:23:26.636 still here and you're still it's that you're on this 0:23:26.756 --> 0:23:33.356 hard road and that you don't want people to like 0:23:33.476 --> 0:23:36.796 look at you with sad eyes all the time. That's 0:23:36.876 --> 0:23:39.436 a hard thing for people to figure out how to 0:23:39.436 --> 0:23:42.756 be because it's sort of a narrow path to walk. 0:23:44.636 --> 0:23:47.076 I was wondering, you know, as you reflect back over 0:23:47.116 --> 0:23:50.236 the last four years, and like you said, you know, 0:23:50.276 --> 0:23:54.836 you kind of one the bad luck lottery in terms 0:23:54.836 --> 0:23:59.036 of having these four years of Chris. What has this 0:23:59.116 --> 0:24:05.156 experience taught you about yourself and how you navigate uncertainty, 0:24:05.396 --> 0:24:08.916 how you navigate change. 0:24:09.596 --> 0:24:14.876 I never thought I'd be the kind of person who 0:24:15.796 --> 0:24:19.436 would manage well in a crisis. You know, how you 0:24:19.716 --> 0:24:22.996 think about something going wrong and you say, like that 0:24:23.156 --> 0:24:25.916 person steps up and they can handle it, and the 0:24:25.916 --> 0:24:30.076 other people are like frozen or retreat. I thought I 0:24:30.076 --> 0:24:34.836 would be a frozen person, and. 0:24:36.236 --> 0:24:39.636 I am not, and. 0:24:42.316 --> 0:24:44.996 I think I really spent a lot of years not 0:24:44.996 --> 0:24:49.596 giving myself enough credit. Chris has always been my barometer, 0:24:50.276 --> 0:24:53.396 and I've known him for so long. If he says 0:24:53.436 --> 0:24:57.716