1 00:00:14,956 --> 00:00:23,476 Speaker 1: Pushkin Hay Slight Changers. This is part one of two 2 00:00:23,556 --> 00:00:27,916 Speaker 1: conversations I've had with writer Kelsey Snow. It was recorded 3 00:00:27,996 --> 00:00:40,476 Speaker 1: in late September of twenty twenty three. 4 00:00:40,716 --> 00:00:42,996 Speaker 2: I was twenty one and I was in love. And 5 00:00:43,556 --> 00:00:45,476 Speaker 2: think about how you felt when you were twenty one. Right, 6 00:00:45,516 --> 00:00:48,436 Speaker 2: there's nothing stopping you. You feel invincible. You don't think 7 00:00:48,556 --> 00:00:50,356 Speaker 2: anything but good things are going to happen to you. 8 00:00:51,156 --> 00:00:55,276 Speaker 1: When Kelsey first met Chris, she fell hard. They soon 9 00:00:55,316 --> 00:00:58,876 Speaker 1: fell in love, got married, and had two kids. But 10 00:00:58,956 --> 00:01:02,716 Speaker 1: then Chris received a devastating diagnosis. 11 00:01:03,036 --> 00:01:04,876 Speaker 2: You have to learn to live while the person you 12 00:01:04,916 --> 00:01:07,356 Speaker 2: love is dying, and nobody wants to believe that that 13 00:01:07,356 --> 00:01:12,556 Speaker 2: could happen to them. 14 00:01:12,676 --> 00:01:16,476 Speaker 1: On today's episode, the complex grief of being a caregiver, 15 00:01:18,476 --> 00:01:21,476 Speaker 1: I'm Maya Shunker and this is a slight change of plans, 16 00:01:21,876 --> 00:01:24,156 Speaker 1: a show about who we are and who we become 17 00:01:24,396 --> 00:01:38,956 Speaker 1: in the face of a big change. Kelsey's husband, Chris Now, 18 00:01:39,556 --> 00:01:43,156 Speaker 1: was thirty seven years old when he was diagnosed with ALS, 19 00:01:43,556 --> 00:01:50,116 Speaker 1: a progressive neurodegenerative disease. ALS can leave people unable to move, talk, eat, 20 00:01:50,156 --> 00:01:53,316 Speaker 1: and breathe on their own, and it currently has no cure. 21 00:01:54,316 --> 00:01:58,796 Speaker 1: Kelsey would later become Chris's full time caregiver. Kelsey has 22 00:01:58,876 --> 00:02:02,396 Speaker 1: chronicled her family's experience in a podcast she hosts called 23 00:02:02,636 --> 00:02:06,476 Speaker 1: Sorry I'm Sad. That's how I first came across her story, 24 00:02:06,996 --> 00:02:08,956 Speaker 1: and I was drawn to her warmth and her ins. 25 00:02:10,396 --> 00:02:13,196 Speaker 1: I reached out to Kelsey over Instagram and over the 26 00:02:13,276 --> 00:02:16,556 Speaker 1: years we struck up a friendship. I'm honored that she 27 00:02:16,676 --> 00:02:18,756 Speaker 1: was willing to share her story with all of us. 28 00:02:20,116 --> 00:02:22,996 Speaker 1: Kelsey first met Chris when she started her internship in 29 00:02:23,036 --> 00:02:26,676 Speaker 1: the sports department at the Boston Globe. Chris was the 30 00:02:26,676 --> 00:02:29,876 Speaker 1: Red Sox beat writer, and he would offer her rides 31 00:02:29,916 --> 00:02:32,156 Speaker 1: to Fenway, the Red Sox ballpark. 32 00:02:32,556 --> 00:02:35,116 Speaker 2: He'd text me if I was working there that day, 33 00:02:35,156 --> 00:02:37,036 Speaker 2: and he'd say, do you want to ride? And my 34 00:02:37,116 --> 00:02:39,836 Speaker 2: friend Adam said, snow never gives me a ride to Fenway. 35 00:02:41,236 --> 00:02:44,836 Speaker 2: That's what I thought, Oh, yeah, maybe he likes me. 36 00:02:45,836 --> 00:02:49,156 Speaker 2: He invited me to go to the gym after we'd 37 00:02:49,156 --> 00:02:51,076 Speaker 2: been at Fenway, and then we went and got like 38 00:02:51,116 --> 00:02:54,996 Speaker 2: smoothies or something, and at one point we were in 39 00:02:55,036 --> 00:03:01,356 Speaker 2: his apartment and he said, well, I like, you know whatever, 40 00:03:01,436 --> 00:03:07,316 Speaker 2: you I said, what, And so then of course I 41 00:03:07,396 --> 00:03:12,716 Speaker 2: decided i'd like to marry him. I think I probably 42 00:03:12,756 --> 00:03:13,836 Speaker 2: knew at that point. 43 00:03:14,996 --> 00:03:17,756 Speaker 1: About a month into getting to know Chris, he mentioned 44 00:03:17,796 --> 00:03:21,476 Speaker 1: to you that he had a family history of Alaska. 45 00:03:21,996 --> 00:03:24,436 Speaker 1: Tell me how that conversation played out. 46 00:03:24,716 --> 00:03:27,396 Speaker 2: He had had one uncle at that point who had 47 00:03:27,436 --> 00:03:30,716 Speaker 2: died of ALS a couple years before I met him. 48 00:03:31,196 --> 00:03:34,156 Speaker 2: Ten to fifteen percent of ALS is genetic, the rest 49 00:03:34,156 --> 00:03:38,396 Speaker 2: of it is sporadic. And I remember him telling me 50 00:03:38,476 --> 00:03:41,916 Speaker 2: that and saying that at that point, I think his 51 00:03:42,036 --> 00:03:45,236 Speaker 2: dad had had the genetic tests, and his dad knew 52 00:03:45,316 --> 00:03:51,196 Speaker 2: that he had the genetic mutation. And I just think 53 00:03:51,276 --> 00:03:54,476 Speaker 2: I was twenty one and I was in love, and 54 00:03:55,836 --> 00:04:00,036 Speaker 2: I do think I misunderstood a little bit the implications 55 00:04:00,076 --> 00:04:03,436 Speaker 2: of having the genetic mutation. It's a fifty to fifty chance, 56 00:04:03,436 --> 00:04:05,476 Speaker 2: it's a coin flip whether it has passed on to 57 00:04:05,516 --> 00:04:08,796 Speaker 2: you from your parent. But if you have the genetic mutation, 58 00:04:09,236 --> 00:04:12,276 Speaker 2: almost one hundred percent chance interesting that you will have 59 00:04:12,516 --> 00:04:16,636 Speaker 2: ALUs become symptomatic at some point in your life. That's 60 00:04:16,676 --> 00:04:18,236 Speaker 2: the part I didn't really understand. I don't know if 61 00:04:18,276 --> 00:04:21,316 Speaker 2: he really understood it at that point either. Think about 62 00:04:21,356 --> 00:04:23,036 Speaker 2: how you felt when you were twenty one, right there's 63 00:04:23,076 --> 00:04:26,356 Speaker 2: nothing stopping you. You feel invincible. You don't think anything but 64 00:04:26,436 --> 00:04:27,676 Speaker 2: good things are going to happen to you. 65 00:04:28,236 --> 00:04:32,156 Speaker 1: Yeah. So let's move forward in time to twenty nineteen. 66 00:04:32,876 --> 00:04:35,316 Speaker 1: You and Chris are married, You have two young children. 67 00:04:35,716 --> 00:04:38,956 Speaker 1: He's thirty seven, you're thirty five. What were the first 68 00:04:38,996 --> 00:04:40,316 Speaker 1: symptoms that he noticed? 69 00:04:41,236 --> 00:04:47,836 Speaker 2: He started to have some like intermittent numbness in two 70 00:04:47,876 --> 00:04:49,396 Speaker 2: fingers on his right hand. 71 00:04:49,476 --> 00:04:51,436 Speaker 3: He's right handed, and. 72 00:04:52,916 --> 00:04:56,276 Speaker 2: We sort of thought, well, that's not really how this 73 00:04:56,396 --> 00:05:00,956 Speaker 2: disease presents. ALS is a process of elimination diagnosis. There's 74 00:05:00,996 --> 00:05:05,196 Speaker 2: no test for it, and the doctors thought it was 75 00:05:05,276 --> 00:05:09,116 Speaker 2: not ALS. They thought he had a pinched ulner nerve 76 00:05:10,396 --> 00:05:13,236 Speaker 2: from just like the positioning of his arms and typing 77 00:05:13,276 --> 00:05:17,116 Speaker 2: and working on his computer and things like that. We 78 00:05:17,196 --> 00:05:19,516 Speaker 2: leaned very hard into that, hope. 79 00:05:19,956 --> 00:05:21,756 Speaker 1: Yeah, what did that look like? The leaning and. 80 00:05:21,756 --> 00:05:26,756 Speaker 2: Heart It looked like trying to match up every symptom 81 00:05:27,276 --> 00:05:31,036 Speaker 2: with this. It looked like avoidant googling as well, like 82 00:05:31,076 --> 00:05:34,876 Speaker 2: there were certain things I wouldn't google. I would never 83 00:05:34,996 --> 00:05:38,316 Speaker 2: google together the words pinched all their nerve and ALS 84 00:05:39,236 --> 00:05:42,076 Speaker 2: because I didn't want to know whether it was a 85 00:05:42,116 --> 00:05:47,316 Speaker 2: common sort of mistake misdiagnosis. Then I finally did that 86 00:05:47,636 --> 00:05:52,516 Speaker 2: Google search, and the first study that popped up was 87 00:05:52,596 --> 00:05:55,436 Speaker 2: a thirty something year old woman who doctors thought had 88 00:05:55,556 --> 00:06:00,956 Speaker 2: pinched all their nerve and ultimately they realized it was ALS. 89 00:06:01,796 --> 00:06:07,396 Speaker 2: And the study it was two paragraphs. You know, patient 90 00:06:07,476 --> 00:06:10,956 Speaker 2: died shortly after Oh gosh. And so there are a 91 00:06:10,956 --> 00:06:13,156 Speaker 2: couple of tests that you can do that are really 92 00:06:13,876 --> 00:06:16,076 Speaker 2: hallmarks for this disease. And one is a test where 93 00:06:16,116 --> 00:06:19,916 Speaker 2: they put needles into your muscles and they gauge the 94 00:06:19,956 --> 00:06:24,476 Speaker 2: way your nerves are interacting with your muscles. And this 95 00:06:24,596 --> 00:06:27,356 Speaker 2: doctor just did test and didn't say a word, and 96 00:06:27,436 --> 00:06:30,876 Speaker 2: afterward finished and said, I think you have some form 97 00:06:31,396 --> 00:06:37,316 Speaker 2: of motor neuron disease. And then your world is just 98 00:06:37,476 --> 00:06:41,956 Speaker 2: poof wow gone. Yeah. 99 00:06:41,996 --> 00:06:44,276 Speaker 1: So you ended up flying to Miami to get an 100 00:06:44,316 --> 00:06:48,676 Speaker 1: expert opinion, and the doctor there says it is, in 101 00:06:48,716 --> 00:06:52,516 Speaker 1: fact the very early stages of ALS. It's fatal, it's 102 00:06:52,556 --> 00:06:56,636 Speaker 1: fast moving, and it's the same type of ALS that 103 00:06:56,756 --> 00:07:00,196 Speaker 1: runs in Chris's family, right. It actually had killed four 104 00:07:00,316 --> 00:07:05,076 Speaker 1: of Chris's family members. I mean, what did it feel 105 00:07:05,156 --> 00:07:06,836 Speaker 1: like to hear that news. 106 00:07:07,516 --> 00:07:08,476 Speaker 3: Stick to my stomach? 107 00:07:10,116 --> 00:07:12,116 Speaker 2: And then you have to figure out how to make 108 00:07:12,156 --> 00:07:16,596 Speaker 2: life possible still when you know, we thought that Chris 109 00:07:16,676 --> 00:07:20,956 Speaker 2: was going to die and die quickly, and our kids 110 00:07:20,956 --> 00:07:21,276 Speaker 2: were so. 111 00:07:21,316 --> 00:07:23,716 Speaker 3: Little, and how do you tell them that? 112 00:07:23,916 --> 00:07:29,796 Speaker 2: And yeah, it was very that was very hard, and 113 00:07:29,876 --> 00:07:31,956 Speaker 2: I think you I felt like people don't want to 114 00:07:31,956 --> 00:07:35,556 Speaker 2: believe you, Like there's not a way out of this disease. 115 00:07:36,196 --> 00:07:36,676 Speaker 3: There's not. 116 00:07:38,116 --> 00:07:40,436 Speaker 2: There's not a treatment for this, right, And so in 117 00:07:40,476 --> 00:07:42,276 Speaker 2: my mind, I thought, you know, I kind of have 118 00:07:42,396 --> 00:07:46,516 Speaker 2: to convince people this is not gonna especially my family. 119 00:07:46,516 --> 00:07:49,916 Speaker 2: You know, my mom, she's scared that I'm gonna She's like, no, 120 00:07:50,316 --> 00:07:51,556 Speaker 2: that can't be right, you know. 121 00:07:52,276 --> 00:07:54,236 Speaker 3: Yeah, and it's no, it's right. 122 00:07:55,876 --> 00:07:59,876 Speaker 1: The doctors told you at that point that Chris's life 123 00:07:59,916 --> 00:08:05,156 Speaker 1: expectancy was somewhere between six and eighteen months. That there 124 00:08:05,196 --> 00:08:06,796 Speaker 1: was a bit of good news in there, which is 125 00:08:06,836 --> 00:08:10,836 Speaker 1: the doctor also said there was a new clinical trial 126 00:08:10,956 --> 00:08:13,996 Speaker 1: that Chris might be eligible to join. Can you tell 127 00:08:13,996 --> 00:08:16,516 Speaker 1: me more about that. 128 00:08:16,516 --> 00:08:19,556 Speaker 2: That is not a typical situation for an als patient. 129 00:08:19,836 --> 00:08:22,236 Speaker 2: Clinical trials are very hard for people to find, and 130 00:08:22,316 --> 00:08:25,116 Speaker 2: oftentimes it's taken them so long to be diagnosed that 131 00:08:25,196 --> 00:08:27,636 Speaker 2: they fail the screening because maybe their breathing is already 132 00:08:27,676 --> 00:08:32,316 Speaker 2: too poor or something like that. So I always say like, 133 00:08:32,796 --> 00:08:37,876 Speaker 2: we won the shit luck lottery. And we left Miami thinking, 134 00:08:38,316 --> 00:08:40,196 Speaker 2: you know, maybe Chris will be the first person to 135 00:08:40,236 --> 00:08:41,196 Speaker 2: survive this disease. 136 00:08:42,836 --> 00:08:46,796 Speaker 1: So how did Chris end up responding to the clinical trial? 137 00:08:47,156 --> 00:08:49,196 Speaker 2: So Chris started in the clinical trial of July of 138 00:08:49,196 --> 00:08:51,876 Speaker 2: twenty nineteen, and so we lived in that little bubble 139 00:08:51,916 --> 00:08:54,676 Speaker 2: for nine months where he really didn't have any progression 140 00:08:55,676 --> 00:09:00,196 Speaker 2: at all, and we kind of moved along in that 141 00:09:00,276 --> 00:09:05,436 Speaker 2: space until April. It's that still sledding season in Canada. 142 00:09:05,556 --> 00:09:09,316 Speaker 2: So we were out snow sledding and our daughter had, 143 00:09:09,436 --> 00:09:11,076 Speaker 2: I don't know, fallen or something. She had a bunch 144 00:09:11,076 --> 00:09:13,556 Speaker 2: of snow in her helmet and I wanted to take 145 00:09:13,556 --> 00:09:16,356 Speaker 2: a picture of them, and I said, he smiled, and 146 00:09:16,356 --> 00:09:18,636 Speaker 2: I had my phone out and I took the picture 147 00:09:18,716 --> 00:09:19,876 Speaker 2: and I looked at it and I was like, you're 148 00:09:19,876 --> 00:09:22,236 Speaker 2: making a weird face to Chris. I said, you're making 149 00:09:22,276 --> 00:09:25,356 Speaker 2: a weird face. Let's take another one. So I did 150 00:09:25,396 --> 00:09:29,116 Speaker 2: it again and I said, you're still making a weird face. 151 00:09:30,276 --> 00:09:33,036 Speaker 2: And then I said one more. I took it again 152 00:09:34,076 --> 00:09:38,076 Speaker 2: and I went, oh shit, and yeah, I just had 153 00:09:38,076 --> 00:09:43,356 Speaker 2: this little droop on one side of his smile, and 154 00:09:43,396 --> 00:09:48,556 Speaker 2: that was like being diagnosed all over again, because we 155 00:09:48,676 --> 00:09:50,756 Speaker 2: thought maybe we would just stay the way we were. 156 00:09:52,876 --> 00:09:55,356 Speaker 1: When did you tell Chris that? Or did you tell 157 00:09:55,436 --> 00:09:58,636 Speaker 1: Chris that day? Because you have this information you were 158 00:09:58,636 --> 00:10:01,756 Speaker 1: carrying in your brain taking this photo, I'm presuming you 159 00:10:01,756 --> 00:10:03,516 Speaker 1: didn't share that in front of your fan, like your 160 00:10:03,596 --> 00:10:05,516 Speaker 1: kids and him in that moment. 161 00:10:05,356 --> 00:10:06,996 Speaker 2: I think it was more of like we looked at 162 00:10:07,036 --> 00:10:10,796 Speaker 2: each other, like I show the photo, and we just 163 00:10:10,836 --> 00:10:13,956 Speaker 2: sort of looked at each other and knew okay, and 164 00:10:13,996 --> 00:10:17,596 Speaker 2: we walked home then pulled the kids on the sled 165 00:10:18,396 --> 00:10:21,796 Speaker 2: with this like, you know, horrible feeling of dread. And 166 00:10:21,876 --> 00:10:25,396 Speaker 2: so then it was just it was pretty quick the 167 00:10:25,596 --> 00:10:29,276 Speaker 2: loss of his smile. And Chris had such a good smile, 168 00:10:30,356 --> 00:10:32,716 Speaker 2: and everybody would comment on Chris's smile, everybody. I mean, 169 00:10:32,716 --> 00:10:34,556 Speaker 2: he was little, his parents called him guy Smiley like 170 00:10:34,596 --> 00:10:36,596 Speaker 2: he was not only did he have a beautiful smile, 171 00:10:36,636 --> 00:10:39,116 Speaker 2: but he was always smiling. And you know, always see 172 00:10:39,516 --> 00:10:41,676 Speaker 2: he works in professional sports, so in a team picture, 173 00:10:42,436 --> 00:10:45,236 Speaker 2: while these guys were very serious, and Chris was always 174 00:10:45,676 --> 00:10:50,516 Speaker 2: you know, huge white teeth, big smile, showing happy, just 175 00:10:50,556 --> 00:10:57,556 Speaker 2: a happy guy, positive, optimistic, and whether he remained those 176 00:10:57,556 --> 00:11:00,836 Speaker 2: things or not, it didn't come across that way because 177 00:11:00,876 --> 00:11:03,476 Speaker 2: now he'd had no facial expressions. I mean, not only 178 00:11:03,476 --> 00:11:07,276 Speaker 2: could he not smile, he all of his facial muscles 179 00:11:07,276 --> 00:11:11,676 Speaker 2: atrophied pretty much completely. He can't blink. He can open 180 00:11:11,676 --> 00:11:13,396 Speaker 2: his eyes, but he can't close them all the way. 181 00:11:13,676 --> 00:11:16,836 Speaker 2: He can't raise his eyebrows, he can't make facial expressions 182 00:11:16,916 --> 00:11:17,276 Speaker 2: at all. 183 00:11:18,196 --> 00:11:22,516 Speaker 1: Yeah, when you think about smiling in the context of 184 00:11:22,556 --> 00:11:26,796 Speaker 1: everything else, als can rob a persona that can seem trivial. 185 00:11:26,956 --> 00:11:31,436 Speaker 1: But I know from reading your work and listening to 186 00:11:31,476 --> 00:11:36,876 Speaker 1: interviews with you, this was a massively painful loss. 187 00:11:37,316 --> 00:11:41,316 Speaker 2: Yeah, it's very hard, whether you want to believe it 188 00:11:41,396 --> 00:11:43,756 Speaker 2: or not. You often end up assuming the worst in 189 00:11:43,756 --> 00:11:46,596 Speaker 2: that person's mood. And I'm an adult and I have 190 00:11:46,676 --> 00:11:49,356 Speaker 2: a hard time with that. So then you know that 191 00:11:49,716 --> 00:11:51,156 Speaker 2: is even more difficult. 192 00:11:50,756 --> 00:11:51,316 Speaker 3: For our kids. 193 00:11:52,116 --> 00:11:54,716 Speaker 1: Yeah, meaning you assume that Chris is in a bad 194 00:11:54,756 --> 00:11:56,516 Speaker 1: mood when he might very well not be. He's just 195 00:11:56,556 --> 00:11:57,996 Speaker 1: not able to show you his joy. 196 00:11:58,156 --> 00:12:01,316 Speaker 2: Yeah, or are you tired or do you feel off today? 197 00:12:02,516 --> 00:12:07,956 Speaker 2: Because he can't show me a different feeling and no, 198 00:12:08,116 --> 00:12:12,676 Speaker 2: his smile, I don't know how you can rank like 199 00:12:12,716 --> 00:12:14,356 Speaker 2: the hard parts of this, but. 200 00:12:16,196 --> 00:12:18,116 Speaker 3: I think a lot. I just wish you could still smile. 201 00:12:22,356 --> 00:12:24,476 Speaker 1: We'll be back in a moment with a slight change 202 00:12:24,476 --> 00:12:41,356 Speaker 1: of plans. A few months after the sledding photo, Chris 203 00:12:41,396 --> 00:12:44,356 Speaker 1: told Kelsey he was experiencing a new symptom. 204 00:12:44,876 --> 00:12:47,756 Speaker 2: He told me that he had noticed that he sometimes 205 00:12:47,796 --> 00:12:51,276 Speaker 2: had to swallow twice. It's called double swallowing, which is 206 00:12:51,276 --> 00:12:55,876 Speaker 2: a very common first symptom that an als patient is 207 00:12:55,916 --> 00:12:58,876 Speaker 2: losing their ability to swallow or having progression, and they're 208 00:12:58,876 --> 00:13:04,996 Speaker 2: swallowing muscles. So he's losing his smile. He's losing his 209 00:13:05,076 --> 00:13:11,796 Speaker 2: ability to swallow. That fall of twenty twenty was incredibly 210 00:13:11,796 --> 00:13:14,556 Speaker 2: hard for our family. We had some choking things. It 211 00:13:14,596 --> 00:13:17,876 Speaker 2: was quite traumatic for our kids. For me, they got 212 00:13:17,916 --> 00:13:20,276 Speaker 2: to the point where every single day we were taking 213 00:13:20,316 --> 00:13:23,316 Speaker 2: something off the list of foods that he could eat. 214 00:13:24,276 --> 00:13:26,996 Speaker 3: He was losing weight. He was really. 215 00:13:26,716 --> 00:13:29,516 Speaker 2: Spending six hours a day trying to consume enough food 216 00:13:29,556 --> 00:13:32,916 Speaker 2: to not lose weight. And in late November of that 217 00:13:32,996 --> 00:13:37,276 Speaker 2: year he got a feeding tube, which was revolutionary for us, 218 00:13:37,316 --> 00:13:40,756 Speaker 2: and he did very well with the feeding tube. Pe 219 00:13:40,836 --> 00:13:43,236 Speaker 2: gained a bunch of weight back. It was going really well, 220 00:13:44,116 --> 00:13:48,196 Speaker 2: and then he started to reflux stomach contents and then 221 00:13:48,276 --> 00:13:53,356 Speaker 2: aspirate it. So an aspiration event is basically anytime you say, oh, 222 00:13:53,356 --> 00:13:57,916 Speaker 2: that went down the wrong way, you aspirated. So when 223 00:13:57,916 --> 00:14:01,996 Speaker 2: you're swallowing, muscles weaken, you're more likely to get things 224 00:14:01,996 --> 00:14:04,996 Speaker 2: in your lungs, whether it's water or food, And anytime 225 00:14:05,036 --> 00:14:07,156 Speaker 2: you get something in your lungs, there's a risk of 226 00:14:07,156 --> 00:14:08,356 Speaker 2: you developing an ammonia. 227 00:14:09,396 --> 00:14:10,836 Speaker 3: And over a. 228 00:14:10,796 --> 00:14:13,796 Speaker 2: Period of thirteen months, he was in the hospital eight 229 00:14:13,836 --> 00:14:19,356 Speaker 2: times with aspiration events and that got very, very scary 230 00:14:19,396 --> 00:14:23,876 Speaker 2: for us. It spiraled pretty quickly to the point where 231 00:14:24,196 --> 00:14:26,876 Speaker 2: he was admitted to the ICU. He ended up on 232 00:14:27,796 --> 00:14:32,356 Speaker 2: a ventilator two times, and he had a bacterial. 233 00:14:31,916 --> 00:14:34,236 Speaker 3: Pneumonia, a viral pneumonia. 234 00:14:33,996 --> 00:14:36,476 Speaker 2: Influenza A, and a staff infection. He was in the 235 00:14:36,636 --> 00:14:41,236 Speaker 2: ICU for two weeks. And when he went into the ICU, 236 00:14:41,556 --> 00:14:44,356 Speaker 2: he could drive, he could go to work by himself, 237 00:14:44,436 --> 00:14:47,756 Speaker 2: he could do everything he needed to do. And when 238 00:14:47,756 --> 00:14:50,716 Speaker 2: he got out of the ICU, he went from being 239 00:14:50,796 --> 00:14:54,156 Speaker 2: I would say ninety percent independent before to one hundred 240 00:14:54,156 --> 00:14:57,556 Speaker 2: percent dependent on me after the ICU, and that never changed. 241 00:14:58,316 --> 00:15:01,276 Speaker 2: He can type with two fingers on his left hand, 242 00:15:01,436 --> 00:15:03,476 Speaker 2: and that's how he works. He still works full time, 243 00:15:04,236 --> 00:15:07,916 Speaker 2: but it went from him doing almost everything by himself 244 00:15:08,516 --> 00:15:12,156 Speaker 2: to any single thing you do in a day, zipping 245 00:15:12,236 --> 00:15:16,316 Speaker 2: up your hoodie, going to the washroom, washing your hair 246 00:15:16,476 --> 00:15:19,836 Speaker 2: or your body in the shower, arranging your blankets in bed, 247 00:15:21,436 --> 00:15:23,676 Speaker 2: you name it, I do it for him. 248 00:15:26,516 --> 00:15:28,356 Speaker 1: You know, you were already in the mode of caregiving, 249 00:15:28,436 --> 00:15:32,716 Speaker 1: obviously raising two young kids when this all started. And 250 00:15:34,516 --> 00:15:36,956 Speaker 1: what was it like to take on this new identity 251 00:15:37,036 --> 00:15:39,676 Speaker 1: of caregiver for your young spouse? 252 00:15:41,156 --> 00:15:46,716 Speaker 3: Yeah, in his early forties. Yeah, Yeah. 253 00:15:46,836 --> 00:15:51,716 Speaker 2: I remember having conversations with my friend Sondra because her 254 00:15:51,756 --> 00:15:56,116 Speaker 2: husband was more progressed than Chris, and I remember her 255 00:15:56,396 --> 00:15:58,236 Speaker 2: talking about caregiving. 256 00:15:59,716 --> 00:16:02,396 Speaker 3: In a way that felt like, I hope that's not true. 257 00:16:02,596 --> 00:16:05,756 Speaker 2: I hope I hope that I don't find it as 258 00:16:05,796 --> 00:16:07,836 Speaker 2: awful as she's finding it. 259 00:16:08,756 --> 00:16:11,876 Speaker 3: But it it is. It is awful. It's horrible. 260 00:16:11,956 --> 00:16:15,516 Speaker 2: Yeah, that's not the right word caregiving. 261 00:16:17,396 --> 00:16:19,876 Speaker 1: I would find it completely excruciatingly horrible. 262 00:16:19,916 --> 00:16:21,236 Speaker 3: Okay, for what it's worth, it is. 263 00:16:21,876 --> 00:16:23,476 Speaker 1: You don't want to say that because it's your person, 264 00:16:23,996 --> 00:16:25,076 Speaker 1: but it's okay to say that. 265 00:16:25,156 --> 00:16:26,876 Speaker 3: Kelsey. Yeah, it's so hard. 266 00:16:27,636 --> 00:16:30,396 Speaker 2: You can't be a wife and a caregiver at the 267 00:16:30,436 --> 00:16:33,676 Speaker 2: same time. So they just this person just starts to 268 00:16:33,716 --> 00:16:38,476 Speaker 2: be a patient for you, you know, in. 269 00:16:38,436 --> 00:16:47,236 Speaker 3: The real, true sense of like being totally open about this. 270 00:16:47,316 --> 00:16:49,956 Speaker 2: You start to like dreave coming home because you know 271 00:16:49,996 --> 00:16:52,356 Speaker 2: they're going to ask you for all the things they've 272 00:16:52,356 --> 00:16:54,956 Speaker 2: been waiting to have done, you know, and they're not. 273 00:16:55,036 --> 00:16:57,116 Speaker 2: It's not like they're asking you for extra things, but 274 00:16:57,116 --> 00:17:00,436 Speaker 2: they need help with everything. And we don't have any 275 00:17:00,436 --> 00:17:03,516 Speaker 2: family here, so I have, you know, I have some 276 00:17:03,716 --> 00:17:06,196 Speaker 2: wonderful friends, but it's not we know, that's not the 277 00:17:06,236 --> 00:17:09,956 Speaker 2: same thing as family. Our son just turned twelve, our 278 00:17:09,996 --> 00:17:12,556 Speaker 2: daughter turns nine at the end of this month. They're 279 00:17:12,636 --> 00:17:15,676 Speaker 2: very busy. I'm the only driver in my house. I 280 00:17:15,756 --> 00:17:18,556 Speaker 2: am trying to get you know, dinner ready, which I'd 281 00:17:18,596 --> 00:17:24,956 Speaker 2: hardly ever cook anymore. It's so consuming, it is so draining, 282 00:17:25,996 --> 00:17:30,956 Speaker 2: and a huge part of it is feeling like nobody 283 00:17:31,076 --> 00:17:35,996 Speaker 2: is taking care of you, and there's all sorts of 284 00:17:35,996 --> 00:17:39,596 Speaker 2: complicated emotions involved in it. You can't say to somebody, 285 00:17:39,596 --> 00:17:42,716 Speaker 2: this is going to get better, because what does that 286 00:17:42,796 --> 00:17:46,276 Speaker 2: mean if my responsibility is as a caregiver giveitter. 287 00:17:46,596 --> 00:17:47,156 Speaker 3: That's because my. 288 00:17:47,236 --> 00:17:55,756 Speaker 2: Husband has died, so caregiving is very hard. It's hard 289 00:17:55,796 --> 00:17:58,676 Speaker 2: on everybody, and I think that a lot of things 290 00:17:58,716 --> 00:18:01,756 Speaker 2: can be true. At the same time, I remember before 291 00:18:02,516 --> 00:18:05,036 Speaker 2: I really was actually being a caregiver for Chris, saying 292 00:18:05,076 --> 00:18:07,796 Speaker 2: like it's an honor to care for Chris. And I've 293 00:18:07,796 --> 00:18:09,956 Speaker 2: thought about that a lot, sort of like, oh, you're 294 00:18:10,836 --> 00:18:14,196 Speaker 2: fucking idiot, Kelsey, you know, to say that out loud 295 00:18:14,276 --> 00:18:15,236 Speaker 2: because you didn't get it. 296 00:18:15,716 --> 00:18:19,756 Speaker 3: And at the same time, it is. 297 00:18:21,756 --> 00:18:25,276 Speaker 1: You know, you've written about feeling resentment as a caregiver, 298 00:18:25,836 --> 00:18:30,636 Speaker 1: and yeah, just talk to me about that feeling. I mean, 299 00:18:30,636 --> 00:18:31,716 Speaker 1: how do you engage with it. 300 00:18:34,076 --> 00:18:41,756 Speaker 2: I'm not jealous of Chris, obviously, but I'm jealous maybe 301 00:18:41,796 --> 00:18:44,956 Speaker 2: of the fact that he has somebody who cares for 302 00:18:45,036 --> 00:18:48,676 Speaker 2: him like I do. So I do have resentment, but 303 00:18:49,996 --> 00:18:52,436 Speaker 2: you know, it's probably that I'm the only parent. It's 304 00:18:52,476 --> 00:18:55,356 Speaker 2: that I'm I'm just the one who everything falls on. 305 00:18:55,996 --> 00:18:57,996 Speaker 2: If the load of laundry needs to get done, if 306 00:18:58,276 --> 00:19:02,796 Speaker 2: the toilet is clogged, if the lawn needs to be mowed, 307 00:19:02,956 --> 00:19:05,876 Speaker 2: if the dishes are in the saink if whatever it is. 308 00:19:07,516 --> 00:19:11,396 Speaker 2: Every single thing is on me, and oftentimes that also 309 00:19:11,396 --> 00:19:14,076 Speaker 2: looks like the emotional labor of what's going on for 310 00:19:14,156 --> 00:19:18,236 Speaker 2: my kids and their mental health, because this is not 311 00:19:18,396 --> 00:19:20,356 Speaker 2: an easy thing for them either. 312 00:19:20,556 --> 00:19:20,916 Speaker 3: You know, we. 313 00:19:22,476 --> 00:19:24,796 Speaker 2: Feel very confident that Chris is going to live for 314 00:19:24,836 --> 00:19:27,356 Speaker 2: a long time still, but they have a dad who 315 00:19:27,356 --> 00:19:30,236 Speaker 2: can't play catch with them. They have a dad who 316 00:19:30,236 --> 00:19:33,596 Speaker 2: can't coach their sports teams. They have a different dad, 317 00:19:34,356 --> 00:19:36,556 Speaker 2: you know, a dad who is in the hospital a 318 00:19:36,596 --> 00:19:40,356 Speaker 2: lot and misses their sports games because the rink is 319 00:19:40,356 --> 00:19:42,916 Speaker 2: too cold and that's hard on his body or whatever 320 00:19:42,956 --> 00:19:45,516 Speaker 2: it is. And so I feel the weight of that 321 00:19:45,716 --> 00:19:50,156 Speaker 2: a lot. I had hit a very low point, probably 322 00:19:50,156 --> 00:19:53,236 Speaker 2: my lowest point in the spring. I went into my 323 00:19:53,316 --> 00:19:56,556 Speaker 2: therapist and I said, I'm just having a really hard 324 00:19:56,596 --> 00:20:01,156 Speaker 2: time managing my stress. And I started to describe all 325 00:20:01,316 --> 00:20:04,076 Speaker 2: all of these things to her that I was feeling, 326 00:20:04,116 --> 00:20:07,556 Speaker 2: and she looked at me and she said, Kelsey, that's 327 00:20:07,636 --> 00:20:14,356 Speaker 2: not stress anxiety, And she said, maybe you want to 328 00:20:14,396 --> 00:20:18,956 Speaker 2: consider trying medication. And so in April I started taking 329 00:20:19,796 --> 00:20:25,156 Speaker 2: Zoloft and did in the summer hire a caregiver who 330 00:20:25,356 --> 00:20:30,676 Speaker 2: started in August, and that's been life changing. I left 331 00:20:30,716 --> 00:20:35,036 Speaker 2: home one day and I came back and I don't 332 00:20:35,036 --> 00:20:37,076 Speaker 2: have so many hours that I hadn't seen christ and 333 00:20:37,076 --> 00:20:39,676 Speaker 2: also I hadn't been on call, because there's two different 334 00:20:39,676 --> 00:20:41,836 Speaker 2: things with caregiving. When you're actively doing it and knowing 335 00:20:41,876 --> 00:20:43,556 Speaker 2: that you're the one who has to do it at 336 00:20:43,556 --> 00:20:46,876 Speaker 2: a moment's notice, both of the things are exhausting. And 337 00:20:46,956 --> 00:20:48,516 Speaker 2: I walked in the door and I realized I had 338 00:20:48,596 --> 00:20:53,156 Speaker 2: missed him and I hadn't missed him for months because 339 00:20:53,156 --> 00:20:55,116 Speaker 2: I hadn't been a position too, because normally I'd walk 340 00:20:55,156 --> 00:20:58,036 Speaker 2: in the door and feel dread. Now I've been gone, 341 00:20:58,076 --> 00:20:59,596 Speaker 2: and now I'm going to have to do all of 342 00:20:59,596 --> 00:21:02,156 Speaker 2: these things. But I walked in and our caregiver was 343 00:21:02,196 --> 00:21:07,316 Speaker 2: with him. They were doing the things, and I was like, oh, 344 00:21:07,356 --> 00:21:12,476 Speaker 2: that's right, you're my husband. And medication was the root 345 00:21:12,516 --> 00:21:15,476 Speaker 2: of all of that, because the medication pulled me out 346 00:21:15,596 --> 00:21:19,076 Speaker 2: of that sort of permanent fight or flight that I 347 00:21:19,116 --> 00:21:22,996 Speaker 2: was in, and that was what allowed me to troubleshoot 348 00:21:23,036 --> 00:21:25,236 Speaker 2: the things that were going on and say what else 349 00:21:25,276 --> 00:21:29,476 Speaker 2: can I do here? Because I wasn't constantly, you know, 350 00:21:29,516 --> 00:21:33,876 Speaker 2: in that anxiety fueled frenzy. 351 00:21:33,956 --> 00:21:36,116 Speaker 1: You know, it strikes me that because the kind of 352 00:21:36,156 --> 00:21:39,476 Speaker 1: grief you're facing isn't sudden, like what might accompany the 353 00:21:39,516 --> 00:21:43,596 Speaker 1: death of a loved one, but instead it's the gradual 354 00:21:43,716 --> 00:21:47,036 Speaker 1: loss of the Chris that you once knew that. There 355 00:21:47,036 --> 00:21:50,676 Speaker 1: may be unique challenges associated with dealing with the situation 356 00:21:50,836 --> 00:21:55,036 Speaker 1: like this in terms of the way that you process grief, 357 00:21:55,076 --> 00:21:57,196 Speaker 1: the way that those around you process grief, And I'm 358 00:21:57,196 --> 00:21:58,996 Speaker 1: wondering if you can reflect a bit on what it's 359 00:21:59,116 --> 00:22:01,996 Speaker 1: like to handle that kind of grief situation. 360 00:22:02,836 --> 00:22:04,316 Speaker 3: Yeah. 361 00:22:04,716 --> 00:22:08,876 Speaker 2: I was messaging with a young mom in Ontario who 362 00:22:09,156 --> 00:22:11,476 Speaker 2: whose husband has als and she has a toddler, a 363 00:22:11,516 --> 00:22:14,916 Speaker 2: little girl, and we were talking about how we feel 364 00:22:14,916 --> 00:22:23,076 Speaker 2: like grief misfits because we aren't widows, but we aren't 365 00:22:23,156 --> 00:22:28,356 Speaker 2: like our friends, and it's this sort of weird middle space. 366 00:22:30,236 --> 00:22:31,756 Speaker 3: I did a podcast episode with. 367 00:22:31,716 --> 00:22:34,676 Speaker 2: A mom in my neighborhood who lived for about six 368 00:22:34,756 --> 00:22:38,676 Speaker 2: years with metastatic breast cancer, and I remember her saying 369 00:22:38,796 --> 00:22:42,236 Speaker 2: that the longer she lived, the more she felt like 370 00:22:42,316 --> 00:22:46,636 Speaker 2: people would see her and be like, you're not dead yet. 371 00:22:47,956 --> 00:22:53,636 Speaker 2: And it is very hard for people to look at 372 00:22:53,676 --> 00:22:57,716 Speaker 2: a disease like this. They don't want to see prolonged suffering. 373 00:22:57,836 --> 00:23:00,636 Speaker 2: They don't want to see that. You might have to 374 00:23:00,796 --> 00:23:04,996 Speaker 2: learn how to live. You have to learn to live 375 00:23:05,036 --> 00:23:08,876 Speaker 2: while the person you love is dying, and nobody wants 376 00:23:08,876 --> 00:23:13,476 Speaker 2: to be that could happen to them, And so it 377 00:23:13,516 --> 00:23:16,396 Speaker 2: is a very weird space for grief. And I feel 378 00:23:16,476 --> 00:23:19,076 Speaker 2: like there are two sides to it. One is that 379 00:23:19,916 --> 00:23:23,156 Speaker 2: you don't want people to forget about you, that you're 380 00:23:23,196 --> 00:23:26,636 Speaker 2: still here and you're still it's that you're on this 381 00:23:26,756 --> 00:23:33,356 Speaker 2: hard road and that you don't want people to like 382 00:23:33,476 --> 00:23:36,796 Speaker 2: look at you with sad eyes all the time. That's 383 00:23:36,876 --> 00:23:39,436 Speaker 2: a hard thing for people to figure out how to 384 00:23:39,436 --> 00:23:42,756 Speaker 2: be because it's sort of a narrow path to walk. 385 00:23:44,636 --> 00:23:47,076 Speaker 1: I was wondering, you know, as you reflect back over 386 00:23:47,116 --> 00:23:50,236 Speaker 1: the last four years, and like you said, you know, 387 00:23:50,276 --> 00:23:54,836 Speaker 1: you kind of one the bad luck lottery in terms 388 00:23:54,836 --> 00:23:59,036 Speaker 1: of having these four years of Chris. What has this 389 00:23:59,116 --> 00:24:05,156 Speaker 1: experience taught you about yourself and how you navigate uncertainty, 390 00:24:05,396 --> 00:24:08,916 Speaker 1: how you navigate change. 391 00:24:09,596 --> 00:24:14,876 Speaker 2: I never thought I'd be the kind of person who 392 00:24:15,796 --> 00:24:19,436 Speaker 2: would manage well in a crisis. You know, how you 393 00:24:19,716 --> 00:24:22,996 Speaker 2: think about something going wrong and you say, like that 394 00:24:23,156 --> 00:24:25,916 Speaker 2: person steps up and they can handle it, and the 395 00:24:25,916 --> 00:24:30,076 Speaker 2: other people are like frozen or retreat. I thought I 396 00:24:30,076 --> 00:24:34,836 Speaker 2: would be a frozen person, and. 397 00:24:36,236 --> 00:24:39,636 Speaker 3: I am not, and. 398 00:24:42,316 --> 00:24:44,996 Speaker 2: I think I really spent a lot of years not 399 00:24:44,996 --> 00:24:49,596 Speaker 2: giving myself enough credit. Chris has always been my barometer, 400 00:24:50,276 --> 00:24:53,396 Speaker 2: and I've known him for so long. If he says 401 00:24:53,436 --> 00:24:57,716 Speaker 2: it's going to be okay, okay, it'll be okay, and 402 00:24:57,996 --> 00:25:00,676 Speaker 2: I could lean on him for that. And then when 403 00:25:00,716 --> 00:25:05,716 Speaker 2: he was diagnosed, I remember having a very vivid realization 404 00:25:06,076 --> 00:25:09,436 Speaker 2: that I have to do that now for him. I 405 00:25:09,556 --> 00:25:11,396 Speaker 2: have to be the one in my house to say, 406 00:25:11,676 --> 00:25:15,396 Speaker 2: we're going to be okay. This is hard, this hurts, 407 00:25:16,556 --> 00:25:19,076 Speaker 2: and we're going to be okay. We'll figure out a 408 00:25:19,076 --> 00:25:25,276 Speaker 2: way through it whatever it looks like. And I'm I 409 00:25:25,276 --> 00:25:28,676 Speaker 2: think I'm pretty good at it. And while being a 410 00:25:28,716 --> 00:25:34,316 Speaker 2: caregiver is incredibly hard, I will forever be so proud 411 00:25:34,356 --> 00:25:37,796 Speaker 2: of myself for the way that I've cared for my husband. 412 00:25:38,676 --> 00:25:42,636 Speaker 2: And we'll continue too, and that we always keep trying 413 00:25:42,676 --> 00:25:44,876 Speaker 2: to be better versions of ourselves, even in the middle 414 00:25:45,036 --> 00:25:49,036 Speaker 2: of what feels often like an impossible circumstance, We're still 415 00:25:49,036 --> 00:25:51,796 Speaker 2: always striving to do better with what we have. 416 00:25:52,996 --> 00:25:54,596 Speaker 3: We don't give up, and we don't. 417 00:25:54,316 --> 00:25:58,516 Speaker 2: Cower, and we put our shoulders back and we go 418 00:25:58,596 --> 00:26:01,436 Speaker 2: through it. 419 00:26:20,476 --> 00:26:23,796 Speaker 1: Two days after I recorded this, conversation with Kelsey. Chris 420 00:26:23,876 --> 00:26:27,916 Speaker 1: was napping at home and never woke up. Eight months later, 421 00:26:28,036 --> 00:26:30,156 Speaker 1: Kelsey let me know that she wanted to share what 422 00:26:30,196 --> 00:26:34,156 Speaker 1: her grief has looked like since then. That's our next episode. 423 00:26:34,676 --> 00:26:37,236 Speaker 1: I'm so grateful to Kelsey for being willing to share, 424 00:26:37,716 --> 00:26:39,596 Speaker 1: and I think we have so much to learn from her. 425 00:26:41,276 --> 00:26:44,116 Speaker 1: Also a quick note, I've already mentioned that Kelsey and 426 00:26:44,156 --> 00:26:47,076 Speaker 1: I are friends, and for the sake of openness, I 427 00:26:47,116 --> 00:26:49,996 Speaker 1: wanted to share with listeners that in the immediate aftermath 428 00:26:50,036 --> 00:26:53,516 Speaker 1: of Chris's death, I started an online fundraiser for her family. 429 00:26:54,916 --> 00:26:57,196 Speaker 1: If you know someone who's a caregiver and would find 430 00:26:57,196 --> 00:27:00,356 Speaker 1: this conversation helpful, we on the Slight Change team would 431 00:27:00,356 --> 00:27:02,716 Speaker 1: be grateful if you could share this episode with them. 432 00:27:03,276 --> 00:27:16,956 Speaker 1: Thanks so much. A Slight Change of Plans is created, written, 433 00:27:17,036 --> 00:27:20,756 Speaker 1: and executive produced by me Maya Shunker. The Slight Change 434 00:27:20,796 --> 00:27:25,076 Speaker 1: family includes our showrunner Tyler Green, our senior editor Kate 435 00:27:25,116 --> 00:27:29,756 Speaker 1: Parkinson Morgan, our senior producer Trisha Bobida, and our engineer 436 00:27:29,876 --> 00:27:33,876 Speaker 1: Eric o'huang. Louis Scara wrote our delightful theme song, and 437 00:27:33,956 --> 00:27:37,436 Speaker 1: Ginger Smith helped arrange the vocals. A Slight Change of 438 00:27:37,476 --> 00:27:40,516 Speaker 1: Plans is a production of Pushkin Industries, so a big 439 00:27:40,556 --> 00:27:44,116 Speaker 1: thanks to everyone there and of course a very special 440 00:27:44,156 --> 00:27:47,156 Speaker 1: thanks to Jimmy Lee. You can follow a slight change 441 00:27:47,156 --> 00:27:50,676 Speaker 1: of Plans on Instagram at doctor Maya Shunker. See you 442 00:27:50,796 --> 00:27:51,236 Speaker 1: next week.