1 00:00:02,680 --> 00:00:05,720 Speaker 1: In this world where I feel like we're also just disconnected. 2 00:00:06,519 --> 00:00:11,119 Speaker 1: There is something so beautiful about this connection that I 3 00:00:11,160 --> 00:00:15,080 Speaker 1: am getting from other care partners that are going through this. 4 00:00:15,240 --> 00:00:17,279 Speaker 1: It is deep, it is meaningful. I don't have to 5 00:00:17,320 --> 00:00:19,800 Speaker 1: have these long drawn out conversations with them. We can 6 00:00:19,840 --> 00:00:23,439 Speaker 1: see each other, We hold hands, we hug, we cry together. 7 00:00:23,560 --> 00:00:27,280 Speaker 1: I mean, there is such beauty in that in a 8 00:00:27,320 --> 00:00:30,080 Speaker 1: world that just feels so discombobulated. 9 00:00:31,480 --> 00:00:34,680 Speaker 2: Hi. Everyone, I'm Katie Couric, and this is next question. 10 00:00:36,760 --> 00:00:39,160 Speaker 2: Emma Hemi Willis and I met a few years ago, 11 00:00:39,320 --> 00:00:43,360 Speaker 2: and I was immediately struck by her grace and intelligence. 12 00:00:43,680 --> 00:00:47,960 Speaker 2: She somehow exuded calmness and serenity, but I also knew 13 00:00:48,000 --> 00:00:50,760 Speaker 2: that every day she was probably feeling like her heart 14 00:00:50,880 --> 00:00:53,519 Speaker 2: was in a vice because she's had to witness the 15 00:00:53,520 --> 00:00:58,080 Speaker 2: heartbreaking decline of her husband, Bruce Willis from Front Door 16 00:00:58,120 --> 00:01:02,400 Speaker 2: temporal Dementia. Becomes such an important voice from millions of 17 00:01:02,440 --> 00:01:07,120 Speaker 2: caregivers all around the world, bravely sharing her family's experience, 18 00:01:07,520 --> 00:01:09,399 Speaker 2: and now she's written a book that will make so 19 00:01:09,480 --> 00:01:13,720 Speaker 2: many people like her feel less alone, called The Unexpected Journey, 20 00:01:14,120 --> 00:01:18,400 Speaker 2: Finding Strength, Hope, and Yourself on the Caregiving Path. Emma 21 00:01:18,480 --> 00:01:22,640 Speaker 2: invites us into the realities of FTD, the early signs, 22 00:01:22,720 --> 00:01:26,640 Speaker 2: the ambiguous loss, and the toll caregiving takes, and she 23 00:01:26,800 --> 00:01:30,479 Speaker 2: offers practical ways to build community, protect your own health, 24 00:01:30,760 --> 00:01:34,920 Speaker 2: and keep love at the center. It's candid, compassionate, and 25 00:01:35,040 --> 00:01:40,640 Speaker 2: full of hard won wisdom. Emma, So good to see you. 26 00:01:40,720 --> 00:01:43,000 Speaker 2: Thank you so much for coming in and talking to 27 00:01:43,040 --> 00:01:44,000 Speaker 2: me about your book. 28 00:01:44,280 --> 00:01:46,200 Speaker 1: Thank you so much, thank you for having me. 29 00:01:46,400 --> 00:01:48,720 Speaker 2: I'm really happy to see you again. You know, we, 30 00:01:49,200 --> 00:01:51,320 Speaker 2: as I said, got to know each other a little 31 00:01:51,320 --> 00:01:55,400 Speaker 2: bit a couple of years ago, and last October we 32 00:01:55,480 --> 00:01:59,840 Speaker 2: spoke at a town and country summit all about caregiving, 33 00:02:00,520 --> 00:02:04,440 Speaker 2: and in that conversation you said to me, I'm trying 34 00:02:04,480 --> 00:02:07,560 Speaker 2: to find that balance between the grief and the sadness 35 00:02:07,560 --> 00:02:10,480 Speaker 2: that I feel, which can just crack open at any 36 00:02:10,520 --> 00:02:15,079 Speaker 2: given moment, and finding joy. I say that FTD whispers, 37 00:02:15,160 --> 00:02:18,320 Speaker 2: it doesn't shout. It's hard for me to say. This 38 00:02:18,400 --> 00:02:21,080 Speaker 2: is where Bruce ended, and this is where his disease 39 00:02:21,120 --> 00:02:27,000 Speaker 2: started to take over. Bruce was diagnosed in twenty twenty two, 40 00:02:27,680 --> 00:02:30,960 Speaker 2: you said, but a year prior, we had a loose 41 00:02:31,080 --> 00:02:34,960 Speaker 2: diagnosis of aphasia, which is a symptom of a disease, 42 00:02:35,120 --> 00:02:39,239 Speaker 2: but is not the disease. So here we are nearly 43 00:02:39,280 --> 00:02:44,120 Speaker 2: a year later, and I'm wondering how things have shifted 44 00:02:44,240 --> 00:02:47,000 Speaker 2: or changed for you since we had that conversation. 45 00:02:48,120 --> 00:02:51,560 Speaker 1: Well you just reading that, I'm like, yeah, that tracks 46 00:02:51,639 --> 00:02:56,040 Speaker 1: all of that, you know, I think that over time, Well, 47 00:02:56,040 --> 00:02:58,880 Speaker 1: I think where I am today, I'm finding I'm a 48 00:02:58,919 --> 00:03:04,480 Speaker 1: little more. I think I'm again learning how to walk 49 00:03:04,520 --> 00:03:09,240 Speaker 1: with grief, but really being open to find moments of 50 00:03:09,320 --> 00:03:12,800 Speaker 1: joy like that is really starting to come in. I 51 00:03:12,880 --> 00:03:19,240 Speaker 1: realized that it's okay for me to find joy, find laughter, 52 00:03:19,880 --> 00:03:23,760 Speaker 1: you know, find light that by me not it's not 53 00:03:23,800 --> 00:03:27,400 Speaker 1: going to make Bruce any better or any worse. So 54 00:03:28,080 --> 00:03:30,880 Speaker 1: I think that I'm just I feel I have a 55 00:03:30,880 --> 00:03:35,280 Speaker 1: little more footing today than probably a year ago. 56 00:03:35,320 --> 00:03:39,080 Speaker 2: It's a process, and you've adjusted to this new normal. 57 00:03:39,840 --> 00:03:45,040 Speaker 2: And as things have progressed for Bruce, I guess every 58 00:03:45,160 --> 00:03:48,960 Speaker 2: stage requires a bit of an adjustment period, right. 59 00:03:49,640 --> 00:03:53,680 Speaker 1: Yeah, I mean I've definitely adjusted. And I remember where 60 00:03:53,680 --> 00:03:58,000 Speaker 1: I started and I could never even imagine that I 61 00:03:58,040 --> 00:04:01,480 Speaker 1: would find my footing, And I do kind of wish 62 00:04:01,560 --> 00:04:03,720 Speaker 1: someone would have told me that in those early days, 63 00:04:03,760 --> 00:04:08,960 Speaker 1: Like I know, this feels so terrible. But over time, 64 00:04:09,400 --> 00:04:12,560 Speaker 1: like you will find your footing, you will learn how 65 00:04:12,600 --> 00:04:15,600 Speaker 1: to make this your new normal. But I didn't know 66 00:04:15,680 --> 00:04:18,320 Speaker 1: that in those early days, and maybe I just wasn't 67 00:04:18,400 --> 00:04:21,280 Speaker 1: probably even ready to hear that. But you know, with 68 00:04:21,400 --> 00:04:25,599 Speaker 1: this disease, it is a progressive disease, and you know 69 00:04:25,640 --> 00:04:30,200 Speaker 1: there's peaks and plateaus, and right now we're in a 70 00:04:30,240 --> 00:04:34,039 Speaker 1: really good position. But I know that the next shoe 71 00:04:34,080 --> 00:04:37,719 Speaker 1: will drop because it's inevitable, because this is a progressive disease. 72 00:04:38,440 --> 00:04:41,160 Speaker 1: So you know, you're kind of always a little bit 73 00:04:41,200 --> 00:04:44,839 Speaker 1: on edge, a little bit on pins and needles, thinking 74 00:04:44,960 --> 00:04:49,240 Speaker 1: like what next. But what I know is that I 75 00:04:49,400 --> 00:04:52,640 Speaker 1: know when the next shoe drops, I'm going to be 76 00:04:52,680 --> 00:04:53,359 Speaker 1: there to pick it up. 77 00:04:53,800 --> 00:04:59,599 Speaker 2: Is that because you have really educated yourself about this disease, 78 00:05:00,160 --> 00:05:04,200 Speaker 2: you have prepared yourself for the future. 79 00:05:05,320 --> 00:05:08,320 Speaker 1: What I have learned from one of the you know 80 00:05:08,480 --> 00:05:11,680 Speaker 1: specialists in my book, TIPA Snow, She says knowledge is 81 00:05:12,080 --> 00:05:15,920 Speaker 1: the greatest stress reducer. And I think me becoming really 82 00:05:16,120 --> 00:05:20,159 Speaker 1: educated and knowledgeable about what this disease is and isn't 83 00:05:20,279 --> 00:05:23,520 Speaker 1: and how it presents and you know, what are things 84 00:05:23,560 --> 00:05:28,520 Speaker 1: to look for, has really helped kind of settle. I 85 00:05:28,560 --> 00:05:31,240 Speaker 1: had had this siren going off in my head next 86 00:05:31,240 --> 00:05:33,080 Speaker 1: to my ear all the time. But I think it's 87 00:05:33,120 --> 00:05:39,120 Speaker 1: really helped the knowledge, The education is really settled, silenced, 88 00:05:39,120 --> 00:05:41,800 Speaker 1: not silenced, it's the volume has been turned down. 89 00:05:42,320 --> 00:05:44,720 Speaker 2: You know. That's so interesting when I hear you say that, 90 00:05:44,839 --> 00:05:48,120 Speaker 2: because when my husband was sick, you know, that's the 91 00:05:48,240 --> 00:05:52,400 Speaker 2: last thing I wanted was knowledge, because everything I read 92 00:05:52,640 --> 00:05:58,520 Speaker 2: was so devastating. And I think that's somehow I pushed 93 00:05:58,560 --> 00:06:04,520 Speaker 2: all that away and placed it with hope. And it 94 00:06:04,600 --> 00:06:10,719 Speaker 2: is sort of this strange mixture, right of magical thinking 95 00:06:11,000 --> 00:06:14,640 Speaker 2: denial in some ways, at least early on, and of 96 00:06:14,680 --> 00:06:18,800 Speaker 2: course Jay was only six for nine months, and you 97 00:06:18,839 --> 00:06:22,040 Speaker 2: know it was much a much faster progression, a much 98 00:06:22,040 --> 00:06:29,560 Speaker 2: different disease, right, But I eschewed any information about stage 99 00:06:29,560 --> 00:06:33,000 Speaker 2: four Colling cancer because I thought, well, if we can 100 00:06:33,080 --> 00:06:35,919 Speaker 2: just manage it, if we can just wait, and something's 101 00:06:35,960 --> 00:06:38,440 Speaker 2: going to come up and a new treatment is going 102 00:06:38,520 --> 00:06:43,080 Speaker 2: to surface. And did you find yourself engaged in that 103 00:06:43,160 --> 00:06:45,280 Speaker 2: kind of magical thinking for a while? 104 00:06:46,480 --> 00:06:49,840 Speaker 1: Definitely early on before we had a diagnosis, right, I 105 00:06:49,880 --> 00:06:53,360 Speaker 1: wanted to try and figure out fix, you know, see 106 00:06:53,360 --> 00:06:55,640 Speaker 1: what was happening, how can we do this? You know 107 00:06:55,720 --> 00:06:59,880 Speaker 1: what treatments are there? How can we did all the 108 00:07:00,080 --> 00:07:03,119 Speaker 1: things I did, all the things, I turned over every 109 00:07:03,360 --> 00:07:07,400 Speaker 1: stone because I had hope. I really felt like there 110 00:07:07,480 --> 00:07:09,440 Speaker 1: was going to be something out there that was going 111 00:07:09,520 --> 00:07:14,000 Speaker 1: to fix whatever this ambiguous thing was that we were 112 00:07:14,000 --> 00:07:14,640 Speaker 1: dealing with. 113 00:07:14,880 --> 00:07:16,880 Speaker 2: Right, And if you're a can't do person, am I 114 00:07:16,920 --> 00:07:20,119 Speaker 2: think you say, Okay, how do we fix this? What's 115 00:07:20,160 --> 00:07:23,600 Speaker 2: the solution? We're going to come up with something? And 116 00:07:23,640 --> 00:07:30,280 Speaker 2: I think that feeling of powerlessness is so devastating and 117 00:07:30,400 --> 00:07:33,280 Speaker 2: something that is really hard to accept. 118 00:07:34,120 --> 00:07:37,800 Speaker 1: I think for us, what was important for me was 119 00:07:37,920 --> 00:07:42,400 Speaker 1: getting to that diagnosis and understanding what it was that 120 00:07:42,440 --> 00:07:46,480 Speaker 1: we were dealing with, and understanding that there is no 121 00:07:46,600 --> 00:07:50,680 Speaker 1: treatment and there is no cure, and to then really 122 00:07:50,680 --> 00:07:56,800 Speaker 1: be able to sync into not this magical thinking, but like, Okay, 123 00:07:56,840 --> 00:07:59,680 Speaker 1: this is what's been presented. Now I just need to 124 00:07:59,680 --> 00:08:02,280 Speaker 1: ground myself in this and see how can I best 125 00:08:02,280 --> 00:08:06,240 Speaker 1: support Bruce, our two young daughters, and our family and 126 00:08:06,280 --> 00:08:07,600 Speaker 1: myself through this. 127 00:08:08,360 --> 00:08:12,160 Speaker 2: It must have been crushing, and yet having a diagnosis 128 00:08:13,600 --> 00:08:17,320 Speaker 2: did it give you any kind of relief? Just knowing 129 00:08:17,360 --> 00:08:19,080 Speaker 2: what was going on? 130 00:08:19,080 --> 00:08:21,200 Speaker 1: One hundred percent? You know, it was like the blessing 131 00:08:21,240 --> 00:08:25,560 Speaker 1: of the curse. It was a relief to finally be 132 00:08:25,640 --> 00:08:29,000 Speaker 1: able to put a name on what it was so 133 00:08:29,040 --> 00:08:33,200 Speaker 1: that I could then really understand what this disease is 134 00:08:34,160 --> 00:08:36,720 Speaker 1: and also be able to separate my husband from his 135 00:08:36,840 --> 00:08:40,440 Speaker 1: disease because you know, for so long it was you know, 136 00:08:40,520 --> 00:08:43,320 Speaker 1: you think that someone is making these personal choices. You know, 137 00:08:43,400 --> 00:08:47,439 Speaker 1: dementia's is interesting before you come to a diagnosis and 138 00:08:47,559 --> 00:08:50,520 Speaker 1: you think that what they're doing, what they're saying, is 139 00:08:50,800 --> 00:08:53,160 Speaker 1: a personal choice. But then you realize, oh, no, this 140 00:08:53,320 --> 00:08:56,960 Speaker 1: is actually a disease of the brain. His brain is 141 00:08:57,000 --> 00:09:00,720 Speaker 1: being dismantled, And then you know, you can have so 142 00:09:00,840 --> 00:09:07,520 Speaker 1: much more empathy, compassion, patience when you understand what the 143 00:09:07,559 --> 00:09:11,280 Speaker 1: disease is. So I think, yeah, getting to that diagnosis 144 00:09:11,440 --> 00:09:16,920 Speaker 1: was an important important for me to be able to 145 00:09:16,960 --> 00:09:22,840 Speaker 1: move forward and get out of the denial and what 146 00:09:23,000 --> 00:09:26,000 Speaker 1: you know, magical thinking of being able to turn this 147 00:09:26,040 --> 00:09:30,680 Speaker 1: thing around and really understanding what saventure is. 148 00:09:32,160 --> 00:09:35,319 Speaker 2: When we had that conversation that I mentioned last October, 149 00:09:35,360 --> 00:09:38,320 Speaker 2: you said you were writing a book for caregivers, and 150 00:09:38,400 --> 00:09:40,800 Speaker 2: at the time you said, it's not just about how 151 00:09:40,800 --> 00:09:43,480 Speaker 2: to care for your loved ones, it's about how to 152 00:09:43,520 --> 00:09:47,560 Speaker 2: look after yourself in the process. So now you've written 153 00:09:47,559 --> 00:09:50,520 Speaker 2: this book, You've poured your heart and soul into it. 154 00:09:51,240 --> 00:09:54,400 Speaker 2: You've been traveling the country, you've been doing interviews, you've 155 00:09:54,400 --> 00:09:57,440 Speaker 2: been talking to people, and I'm really curious. I'm about 156 00:09:57,440 --> 00:10:01,400 Speaker 2: the reaction you've gotten from p people. I'm sure you've 157 00:10:01,440 --> 00:10:05,840 Speaker 2: heard from many, many people who are in similar situations, 158 00:10:05,880 --> 00:10:10,480 Speaker 2: because there are millions of people like you who are caregivers, 159 00:10:10,960 --> 00:10:13,520 Speaker 2: not only in this country, but really all around the world. 160 00:10:13,880 --> 00:10:16,640 Speaker 1: I mean, there's sixty three million caregivers in the US, 161 00:10:16,840 --> 00:10:19,520 Speaker 1: eleven million of which you're caring for someone with dementia. 162 00:10:20,200 --> 00:10:23,640 Speaker 1: It's affecting so many people. It's everyone's story, right, Everyone 163 00:10:23,720 --> 00:10:27,240 Speaker 1: is affected by this. So, you know, being able to 164 00:10:29,120 --> 00:10:33,320 Speaker 1: like the mission, the purpose of that book was to 165 00:10:33,360 --> 00:10:38,120 Speaker 1: be able to support the next caregiver because caregivers are unseen, 166 00:10:38,520 --> 00:10:41,920 Speaker 1: they are unsupported, so many are doing this on their. 167 00:10:41,760 --> 00:10:44,200 Speaker 2: Own, undervalued, undervalued. 168 00:10:44,880 --> 00:10:49,480 Speaker 1: It's and what I knew was that with the experts 169 00:10:49,520 --> 00:10:51,760 Speaker 1: and the specialists, that I had to be able to 170 00:10:51,800 --> 00:10:55,600 Speaker 1: surround our family. You know, I was able to do 171 00:10:55,640 --> 00:10:58,120 Speaker 1: that because I have some time, I have some energy, 172 00:10:58,559 --> 00:11:04,080 Speaker 1: I have resources, and I have access and many don't. 173 00:11:04,400 --> 00:11:08,200 Speaker 1: Many caregivers don't. And what's happening in these doctor's office 174 00:11:08,280 --> 00:11:11,000 Speaker 1: is that you're getting a diagnosis. You know our stories 175 00:11:11,000 --> 00:11:13,959 Speaker 1: that we got the diagnosis and it was a you know, 176 00:11:14,600 --> 00:11:17,920 Speaker 1: a diagnosis and audios, you know that was it. Chuck 177 00:11:18,000 --> 00:11:19,720 Speaker 1: back in in a couple of months and you leave 178 00:11:19,800 --> 00:11:23,400 Speaker 1: with nothing. I left with a disease I couldn't pronounce, 179 00:11:23,440 --> 00:11:27,280 Speaker 1: I didn't understand it, and no support and I had 180 00:11:27,320 --> 00:11:32,000 Speaker 1: to dig into the internet to really understand what FTD 181 00:11:32,360 --> 00:11:35,560 Speaker 1: was and how do I support our family and what 182 00:11:35,640 --> 00:11:40,240 Speaker 1: will this look like over time? And being able then 183 00:11:40,360 --> 00:11:42,720 Speaker 1: to sort of come out with our family's statement to 184 00:11:42,800 --> 00:11:45,439 Speaker 1: then relax a little bit so that I could then 185 00:11:45,520 --> 00:11:49,520 Speaker 1: go out and actually talk to these specialists, bring them in. 186 00:11:50,200 --> 00:11:52,960 Speaker 1: I knew that the information that I was sitting on 187 00:11:53,160 --> 00:11:55,680 Speaker 1: was so valuable because it was helping me, it was 188 00:11:55,720 --> 00:12:00,679 Speaker 1: helping support our family, and I just knew there is 189 00:12:00,720 --> 00:12:04,040 Speaker 1: a gap out there, and I had this information and 190 00:12:04,280 --> 00:12:06,480 Speaker 1: I was able to put this in the book to 191 00:12:06,559 --> 00:12:10,760 Speaker 1: be able to give to another caregiver, just to be 192 00:12:10,800 --> 00:12:13,560 Speaker 1: able to be of service to someone else. 193 00:12:13,880 --> 00:12:18,600 Speaker 2: What do you wish had happened that first hour when 194 00:12:18,600 --> 00:12:22,600 Speaker 2: you were told of Bruce's diagnosis. How do you think 195 00:12:23,640 --> 00:12:29,640 Speaker 2: medical folks could help patients more from the get go. 196 00:12:31,200 --> 00:12:33,200 Speaker 1: Listen, what I know is that doctors only have a 197 00:12:33,240 --> 00:12:36,920 Speaker 1: finite amount of time to spend with their patient. But 198 00:12:37,040 --> 00:12:41,520 Speaker 1: what I wish would have happened was that, you know, 199 00:12:41,600 --> 00:12:44,760 Speaker 1: here is the diagnosis, this is what it is, and 200 00:12:44,800 --> 00:12:49,200 Speaker 1: then just to be able to provide the caregiver the 201 00:12:49,320 --> 00:12:54,280 Speaker 1: family with one piece of paper that has a couple 202 00:12:54,360 --> 00:12:59,679 Speaker 1: of you know, websites on there that can support the caregiver. 203 00:13:00,280 --> 00:13:03,200 Speaker 1: Because when you walk out with nothing and a check 204 00:13:03,280 --> 00:13:07,520 Speaker 1: back in, you know, that was a really traumatic doctor's appointment. 205 00:13:07,559 --> 00:13:10,360 Speaker 1: The fact that I had to do such deep therapy 206 00:13:10,840 --> 00:13:13,760 Speaker 1: around that because I couldn't even talk about that. You know, 207 00:13:13,800 --> 00:13:16,880 Speaker 1: I you walk out of that and you just your 208 00:13:16,920 --> 00:13:22,640 Speaker 1: whole world has just shifted drastically and you're leaving with nothing. 209 00:13:23,320 --> 00:13:26,040 Speaker 1: So I just think, you know, gosh, you know, if 210 00:13:26,040 --> 00:13:30,800 Speaker 1: they even if you would have just given me one resource, like, okay, well, 211 00:13:30,840 --> 00:13:34,439 Speaker 1: your husband's had been diagnosed with fronto temporal you know, dementia. 212 00:13:34,880 --> 00:13:39,880 Speaker 1: Here is an organization that would be your first resource. 213 00:13:40,480 --> 00:13:43,760 Speaker 1: Go on their website. It's the aft D, the Association 214 00:13:43,920 --> 00:13:46,120 Speaker 1: for a Fronto temporal degeneration, you. 215 00:13:46,040 --> 00:13:48,840 Speaker 2: Know, just one or here's a support grew. 216 00:13:48,800 --> 00:13:53,040 Speaker 1: Here's a support group that we offer at our institution, right, 217 00:13:53,200 --> 00:13:55,640 Speaker 1: you know, here is a social worker who is going 218 00:13:55,679 --> 00:13:59,000 Speaker 1: to now take you into another room to be able 219 00:13:59,040 --> 00:14:00,560 Speaker 1: to let you know these are some of the things 220 00:14:00,559 --> 00:14:03,240 Speaker 1: that you should think about or come back in a 221 00:14:03,240 --> 00:14:06,400 Speaker 1: couple of days when this is settled and we've got 222 00:14:06,440 --> 00:14:09,240 Speaker 1: you like we're gonna, we're there is support for you. 223 00:14:09,640 --> 00:14:13,760 Speaker 2: And then of course you had to help Bruce process it, 224 00:14:14,240 --> 00:14:19,600 Speaker 2: which must have been even more challenging because you not 225 00:14:19,760 --> 00:14:23,840 Speaker 2: only had to process it yourself, but you had I 226 00:14:23,960 --> 00:14:27,360 Speaker 2: can't imagine how difficult that was, Emma, Listen. 227 00:14:27,440 --> 00:14:31,080 Speaker 1: By the time we got a diagnosis, for most people 228 00:14:31,400 --> 00:14:38,040 Speaker 1: with FTD, they are well into their disease. So for Bruce, 229 00:14:38,160 --> 00:14:41,240 Speaker 1: and like for you know, a majority of FTD patients, 230 00:14:41,280 --> 00:14:46,120 Speaker 1: they don't realize, they don't grasp That's another blessing I 231 00:14:46,200 --> 00:14:48,560 Speaker 1: think in this It's like the one thing, one bit 232 00:14:48,640 --> 00:14:52,000 Speaker 1: of grace that FTD I think has given me and 233 00:14:52,080 --> 00:14:55,960 Speaker 1: our family is that Bruce never tapped into it. And 234 00:14:56,040 --> 00:14:58,440 Speaker 1: I'm grateful for that. I sure did. 235 00:14:59,040 --> 00:15:04,880 Speaker 2: But along the way, did he ever kind of express 236 00:15:04,920 --> 00:15:09,400 Speaker 2: to you I'm having trouble or was it just a 237 00:15:09,600 --> 00:15:17,040 Speaker 2: slow erosion of his cognitive ability that just kind of 238 00:15:17,320 --> 00:15:19,280 Speaker 2: he accepted as it happened. 239 00:15:20,120 --> 00:15:22,400 Speaker 1: I think that he didn't realize that it was happening. 240 00:15:22,920 --> 00:15:23,280 Speaker 2: That is. 241 00:15:24,800 --> 00:15:28,840 Speaker 1: How crazy this disease is. It just starts stripping away 242 00:15:29,480 --> 00:15:37,080 Speaker 1: your cognitive thinking as a whole, so. 243 00:15:37,200 --> 00:15:40,520 Speaker 2: You can't even really understand what's happening. 244 00:15:41,040 --> 00:15:42,360 Speaker 1: You can't understand what's happening. 245 00:15:42,920 --> 00:15:46,160 Speaker 2: I know that you started talking about taking care of Bruce, 246 00:15:46,200 --> 00:15:49,040 Speaker 2: and I thought this was so brave of you, Emma, 247 00:15:49,360 --> 00:15:52,880 Speaker 2: on social media, you know, during and really talking about 248 00:15:52,920 --> 00:15:55,520 Speaker 2: it and helping other people. And I just wanted to 249 00:15:55,560 --> 00:15:58,160 Speaker 2: ask you because I don't think we covered it the 250 00:15:58,320 --> 00:16:03,240 Speaker 2: kind of feedback you get from other caregivers who have 251 00:16:03,400 --> 00:16:07,080 Speaker 2: followed your journey, who have now read your book, who feel, 252 00:16:07,320 --> 00:16:10,240 Speaker 2: as I said in the introduction, less alone because of you. 253 00:16:10,840 --> 00:16:13,800 Speaker 2: Can you talk about the feedback you've gotten from them 254 00:16:13,960 --> 00:16:15,000 Speaker 2: and so many others? 255 00:16:15,920 --> 00:16:20,440 Speaker 1: I mean, it's definitely been so positive, right. I think 256 00:16:20,520 --> 00:16:25,520 Speaker 1: that being able to tell, you know, people what this 257 00:16:25,680 --> 00:16:28,320 Speaker 1: disease is, you know, it opened up the door to 258 00:16:28,720 --> 00:16:31,840 Speaker 1: other people within our community because no one knew what 259 00:16:32,120 --> 00:16:34,960 Speaker 1: FTD was. I mean when you get diagnosed with it. 260 00:16:35,240 --> 00:16:38,080 Speaker 2: It's a rare disease and it's a subset of dementia. 261 00:16:38,640 --> 00:16:42,520 Speaker 2: Alzheimer's is the vast majority of that subset, but frontotemporal 262 00:16:43,040 --> 00:16:47,120 Speaker 2: dementia is another. That's right, there are many diseases. There's 263 00:16:47,240 --> 00:16:48,400 Speaker 2: that umbrella of dementia. 264 00:16:48,480 --> 00:16:50,160 Speaker 1: Well, I've learned that there's about one hundred and twenty 265 00:16:50,200 --> 00:16:53,480 Speaker 1: different forms of dementia, so there's a lot. Right. We 266 00:16:53,560 --> 00:16:56,120 Speaker 1: do always think of Alzheimer's because that is the most common, 267 00:16:56,160 --> 00:16:59,320 Speaker 1: but there are plenty of other different dementia, you know, 268 00:16:59,600 --> 00:17:04,240 Speaker 1: I think think for other caregivers, there has been so 269 00:17:04,440 --> 00:17:10,720 Speaker 1: much I think just support and kindness and love, but really, 270 00:17:11,400 --> 00:17:14,000 Speaker 1: you know, we caregivers live in it in such isolation. 271 00:17:14,880 --> 00:17:17,920 Speaker 1: Myself included, you know, there was so much smoke and mirrors. 272 00:17:18,320 --> 00:17:20,720 Speaker 1: Wasn't able to connect with other people because I was 273 00:17:20,800 --> 00:17:23,919 Speaker 1: just so scared about you know, this getting out before 274 00:17:24,040 --> 00:17:25,240 Speaker 1: we were ready to talk about you. 275 00:17:25,359 --> 00:17:28,399 Speaker 2: I had that added layer of Bruce Bean a public figure, 276 00:17:28,480 --> 00:17:32,080 Speaker 2: which is so much pressure, and I can relate to that. 277 00:17:32,280 --> 00:17:34,560 Speaker 2: Even though when my husband was sick, I was the 278 00:17:34,640 --> 00:17:39,080 Speaker 2: public figure, but I fiercely guarded his privacy too because 279 00:17:39,600 --> 00:17:43,120 Speaker 2: it was tabloid fodder, and it was awful. 280 00:17:43,600 --> 00:17:46,720 Speaker 1: It's awful, and I knew it would get really bad, 281 00:17:47,280 --> 00:17:51,159 Speaker 1: and I just wanted again just to protect him and 282 00:17:51,480 --> 00:17:55,399 Speaker 1: just try and navigate this as quietly as possible. But 283 00:17:55,520 --> 00:17:59,119 Speaker 1: there just came a point where I realized, like, this 284 00:17:59,400 --> 00:18:04,520 Speaker 1: is silently killing me, not being able to talk to 285 00:18:04,800 --> 00:18:08,960 Speaker 1: anyone and just doing all of this thinking in my 286 00:18:09,160 --> 00:18:12,880 Speaker 1: head and worrying and what if thinking and catastrophizing everything. 287 00:18:13,480 --> 00:18:18,119 Speaker 1: And you know, the blessing has been to just go 288 00:18:18,320 --> 00:18:21,520 Speaker 1: the complete opposite of that, so that I can now, 289 00:18:22,359 --> 00:18:25,119 Speaker 1: you know, be in these rooms with other caregivers. It 290 00:18:25,160 --> 00:18:27,920 Speaker 1: doesn't matter who my husband is, you know, this caregiving 291 00:18:28,040 --> 00:18:31,359 Speaker 1: just like it levels the playing field. I get to 292 00:18:31,520 --> 00:18:36,280 Speaker 1: now connect with another caregiver who just gets it and 293 00:18:36,800 --> 00:18:41,200 Speaker 1: sees me and canvalidate me. And it goes both ways. 294 00:18:41,280 --> 00:18:43,560 Speaker 1: I mean, in this world where I feel like we're 295 00:18:43,600 --> 00:18:49,159 Speaker 1: also just disconnected, there is something so beautiful about this 296 00:18:49,400 --> 00:18:55,359 Speaker 1: connection that I am getting from other care partners that 297 00:18:55,440 --> 00:18:57,800 Speaker 1: are going through this. It is deep, it is meaningful. 298 00:18:57,840 --> 00:19:00,440 Speaker 1: I don't have to have these long drawn out conversations 299 00:19:00,440 --> 00:19:02,320 Speaker 1: with them. We can see each other, We hold hands, 300 00:19:02,680 --> 00:19:05,560 Speaker 1: we hug, we cry together. I mean, there is such 301 00:19:06,440 --> 00:19:11,200 Speaker 1: beauty in that in a world that just feels so discombobulated. 302 00:19:18,320 --> 00:19:21,560 Speaker 2: Hi everyone, it's me Katiekuric. You know, lately, I've been 303 00:19:21,720 --> 00:19:26,320 Speaker 2: overwhelmed by the whole wellness industry, so much information out 304 00:19:26,359 --> 00:19:31,600 Speaker 2: there about flaxed pelvic floor serums and anti aging. So 305 00:19:31,960 --> 00:19:34,800 Speaker 2: I launched a newsletter It's called Body and Soul to 306 00:19:34,960 --> 00:19:38,359 Speaker 2: share expert approved advice for your physical and mental health. 307 00:19:38,600 --> 00:19:41,840 Speaker 2: And guess what, it's free. Just sign up at Katiecuric 308 00:19:41,920 --> 00:19:45,600 Speaker 2: dot com slash Body and Soul. That's k A T 309 00:19:45,800 --> 00:19:49,000 Speaker 2: I E C O U r C dot com slash 310 00:19:49,280 --> 00:19:52,280 Speaker 2: Body and Soul. I promise it will make you happier 311 00:19:52,520 --> 00:20:07,040 Speaker 2: and healthier. Your book is really kind of a how 312 00:20:07,160 --> 00:20:11,240 Speaker 2: to book in many ways. It's not really just your story, 313 00:20:11,760 --> 00:20:18,159 Speaker 2: it's your learnings. And you have line pages that invite 314 00:20:18,440 --> 00:20:21,480 Speaker 2: readers to write down their responses to questions like what's 315 00:20:21,640 --> 00:20:24,359 Speaker 2: one thing you can do to build more community and 316 00:20:24,480 --> 00:20:29,119 Speaker 2: connection for yourself? What are my barriers to exercising? I 317 00:20:29,280 --> 00:20:33,000 Speaker 2: feel like you're helping people make a plan and you're 318 00:20:33,080 --> 00:20:36,800 Speaker 2: not asking them to read between the lines of what 319 00:20:37,000 --> 00:20:40,399 Speaker 2: they can do. You're actually really kind of being a 320 00:20:40,520 --> 00:20:46,000 Speaker 2: guide for this journey. And I'm curious why you purposely 321 00:20:46,160 --> 00:20:47,600 Speaker 2: created the book this way. 322 00:20:48,600 --> 00:20:53,520 Speaker 1: Because you know, I am very pragmatic, you know, I 323 00:20:54,400 --> 00:20:57,399 Speaker 1: like to have a plan. I like to know what 324 00:20:57,680 --> 00:21:00,520 Speaker 1: it is that I need to do. And I also 325 00:21:00,680 --> 00:21:04,119 Speaker 1: think like caregivers are so fatigued with trying to figure 326 00:21:04,200 --> 00:21:06,399 Speaker 1: everything out or trying to figure all the things all 327 00:21:06,480 --> 00:21:08,560 Speaker 1: the time. We're making decisions all the time, and I 328 00:21:08,800 --> 00:21:12,480 Speaker 1: just really wanted a book that just presented things to 329 00:21:12,920 --> 00:21:16,679 Speaker 1: the caregiver so that can just take the thinking away 330 00:21:16,800 --> 00:21:20,880 Speaker 1: from them so that they can now have these actionable, 331 00:21:21,400 --> 00:21:26,600 Speaker 1: tangible ideas that they can start to put into practice today, 332 00:21:27,080 --> 00:21:30,000 Speaker 1: you know, and you know, yes this is parts of 333 00:21:30,080 --> 00:21:32,520 Speaker 1: my story. But I think what is really powerful about 334 00:21:32,560 --> 00:21:36,479 Speaker 1: this book is the experts and the specialists lending their 335 00:21:36,600 --> 00:21:40,480 Speaker 1: voice to really tell the to give the caregiver permission, 336 00:21:41,000 --> 00:21:44,760 Speaker 1: you know, to tell the caregiver how. 337 00:21:44,080 --> 00:21:47,800 Speaker 2: To what to do. And this isn't just for FTD. 338 00:21:48,000 --> 00:21:51,000 Speaker 2: I mean no, it can be relevant to any kind 339 00:21:51,000 --> 00:21:52,760 Speaker 2: of caregiver, right I think. 340 00:21:52,880 --> 00:21:54,800 Speaker 1: So, I mean I wanted to stay in my lane 341 00:21:55,000 --> 00:21:58,280 Speaker 1: right like FTD is our journey. This is what I know. 342 00:21:59,160 --> 00:22:01,600 Speaker 1: The awareness piece I think is really important to you 343 00:22:01,960 --> 00:22:04,960 Speaker 1: in this day and age, but it is really for 344 00:22:05,080 --> 00:22:09,000 Speaker 1: anyone going through the dementia journey, or as you said, 345 00:22:09,119 --> 00:22:11,159 Speaker 1: just as a caregiver. I think that there are some 346 00:22:11,359 --> 00:22:17,360 Speaker 1: really valuable ideas, advice tips in there that can really 347 00:22:17,480 --> 00:22:18,440 Speaker 1: help someone else. 348 00:22:18,920 --> 00:22:22,360 Speaker 2: Give us a quick primer if you could, Emma on FTD, 349 00:22:23,200 --> 00:22:27,320 Speaker 2: what you want people to know about this specific disease. 350 00:22:29,200 --> 00:22:31,840 Speaker 1: Okay, so let me try. It is even me what 351 00:22:31,960 --> 00:22:34,760 Speaker 1: I'm like, wait, what is it is? It is difficult 352 00:22:34,880 --> 00:22:39,720 Speaker 1: to talk about. So FTD is frontal temporal degeneration. It 353 00:22:39,840 --> 00:22:44,399 Speaker 1: affects the front part, the frontal lobe and your temporal lobes. 354 00:22:44,600 --> 00:22:47,119 Speaker 1: And you know, your frontal lobe is like how we 355 00:22:48,000 --> 00:22:50,800 Speaker 1: show up in the world decision making, you know, how 356 00:22:50,920 --> 00:22:55,600 Speaker 1: we have empathy, sympathy, you know, just for others, and 357 00:22:55,720 --> 00:23:00,960 Speaker 1: our temporal lobes. That is communication, that is yet language, 358 00:23:01,040 --> 00:23:05,760 Speaker 1: being able to read comprehension, and it is different to Alzheimer's. 359 00:23:05,920 --> 00:23:08,600 Speaker 1: So when people people will always ask me like, oh, 360 00:23:08,640 --> 00:23:10,440 Speaker 1: you know, does Bruce know who you are? Does he 361 00:23:10,560 --> 00:23:12,720 Speaker 1: remember you? And I said, yeah, he does because he 362 00:23:13,119 --> 00:23:16,400 Speaker 1: has FTD, he doesn't have Alzheimer's. And I think that's 363 00:23:16,480 --> 00:23:20,160 Speaker 1: really important for people to understand that this is affecting 364 00:23:20,200 --> 00:23:23,320 Speaker 1: a different part of the brain, just like Louis body 365 00:23:23,720 --> 00:23:26,360 Speaker 1: or you know, there are so many other different forms. 366 00:23:26,800 --> 00:23:32,240 Speaker 1: So FTD can affect people in three different ways language, movement, 367 00:23:32,680 --> 00:23:37,760 Speaker 1: or behavior. These are like the subtypes of FTD. Bruce 368 00:23:37,880 --> 00:23:43,360 Speaker 1: has primary progressive aphasia, which is known as PPA FTD PPA. 369 00:23:44,160 --> 00:23:49,520 Speaker 1: So for him, I started noticing just his stutter. He 370 00:23:49,600 --> 00:23:51,280 Speaker 1: had a severe stutter as a child, right. 371 00:23:51,359 --> 00:23:53,399 Speaker 2: I remember reading that it came back, and. 372 00:23:53,440 --> 00:23:55,919 Speaker 1: It started to come back, and you know, like never 373 00:23:56,000 --> 00:23:58,080 Speaker 1: in my wildest dreams that I think that this was 374 00:23:58,160 --> 00:24:02,960 Speaker 1: a symptom of a young on set dementia. But you know, 375 00:24:03,080 --> 00:24:06,240 Speaker 1: a doctor at UCSF, his name is doctor Bruce Miller, 376 00:24:06,359 --> 00:24:10,040 Speaker 1: is an incredible neurologist. He said, you know, some of 377 00:24:10,119 --> 00:24:12,000 Speaker 1: the things to look out for is that you know, 378 00:24:12,080 --> 00:24:14,879 Speaker 1: if you are in your forties, fifties, sixties, when you are, 379 00:24:15,560 --> 00:24:18,320 Speaker 1: you should be very grounded in your life. You're holding 380 00:24:18,359 --> 00:24:21,919 Speaker 1: a job, you're raising your family. If you start seeing 381 00:24:23,600 --> 00:24:28,800 Speaker 1: someone change their personality or shifts start changing so drastically, 382 00:24:29,560 --> 00:24:31,960 Speaker 1: that is a change in the brain and that needs 383 00:24:32,040 --> 00:24:38,879 Speaker 1: to be addressed. FTD commonly gets misdiagnosed as bipolar depression, 384 00:24:39,520 --> 00:24:43,320 Speaker 1: midlife crisis. Because what happens is that when people go 385 00:24:43,560 --> 00:24:46,879 Speaker 1: in to the doctor, they present very well. They're going 386 00:24:46,920 --> 00:24:49,520 Speaker 1: to pass the Alzheimer's memory test of you know, you 387 00:24:49,640 --> 00:24:51,879 Speaker 1: draw the clock and the A to the one to 388 00:24:52,000 --> 00:24:54,320 Speaker 1: the two to the B. They're going to pass that 389 00:24:54,520 --> 00:25:01,040 Speaker 1: because their memory isn't affected. So it's very it's very 390 00:25:01,600 --> 00:25:03,119 Speaker 1: gray this area. 391 00:25:03,720 --> 00:25:07,800 Speaker 2: Are the symptoms the same or do they vary from 392 00:25:07,880 --> 00:25:08,800 Speaker 2: patient to patient? 393 00:25:08,960 --> 00:25:12,440 Speaker 1: It varies because of the different sub types that there are, 394 00:25:12,840 --> 00:25:17,480 Speaker 1: you know, behavioral variant that one you know from I 395 00:25:17,640 --> 00:25:20,240 Speaker 1: hear from other caregivers what I have heard and learned. 396 00:25:20,800 --> 00:25:27,000 Speaker 1: You know, it's inhibition, just being inappropriate, just having no filter. 397 00:25:28,080 --> 00:25:33,280 Speaker 1: And again that wasn't our experience, it was you know. 398 00:25:33,960 --> 00:25:38,320 Speaker 2: PPA, So what is ppa? How does that manifest itself? 399 00:25:38,720 --> 00:25:43,320 Speaker 1: So again that's coming into your temporal lobes primary progressive ephasia. 400 00:25:43,480 --> 00:25:47,960 Speaker 1: So for Bruce and his experience, his stutter came back. 401 00:25:48,640 --> 00:25:52,200 Speaker 1: Words weren't coming as naturally to him, which is just 402 00:25:52,320 --> 00:25:55,200 Speaker 1: so wild because he is all about words. 403 00:25:55,359 --> 00:25:57,879 Speaker 2: And at first, I know you were like, wait, what 404 00:25:58,119 --> 00:26:01,920 Speaker 2: is going on? Is is he not gaslighting me? But 405 00:26:02,359 --> 00:26:05,960 Speaker 2: is he you know, messing with me? You know, yeah, 406 00:26:06,160 --> 00:26:08,760 Speaker 2: what's with him? What confusing? 407 00:26:08,960 --> 00:26:11,879 Speaker 1: It's very confusing, you know, where I felt like we 408 00:26:12,000 --> 00:26:17,120 Speaker 1: were so aligned and there was something off, And again 409 00:26:17,240 --> 00:26:20,159 Speaker 1: it's just gray and ambiguous to say, like, well, what 410 00:26:20,480 --> 00:26:24,080 Speaker 1: was the thing and what was the It's just wasn't. 411 00:26:25,600 --> 00:26:28,440 Speaker 1: It wasn't the person that I married, you know, Bruce 412 00:26:28,560 --> 00:26:32,160 Speaker 1: was very different and I just couldn't put my finger 413 00:26:32,240 --> 00:26:35,280 Speaker 1: on it. But there just comes a point where you 414 00:26:35,840 --> 00:26:38,320 Speaker 1: have to sort of take the bull by the horns 415 00:26:38,680 --> 00:26:40,880 Speaker 1: and be like enough is enough, Like you know, when 416 00:26:40,880 --> 00:26:43,520 Speaker 1: your gut, you know your person better than anyone, and 417 00:26:44,000 --> 00:26:47,040 Speaker 1: you have to know that it is okay to advocate. 418 00:26:47,119 --> 00:26:49,040 Speaker 1: You need to raise your hand, you need to get 419 00:26:49,080 --> 00:26:51,720 Speaker 1: to the doctor, and you need to have your doctor listen. 420 00:26:52,200 --> 00:26:55,080 Speaker 2: What are other signs that people should look for? Amma 421 00:26:55,560 --> 00:26:59,440 Speaker 2: erratic behavior in some cases, right, I mean not being 422 00:26:59,480 --> 00:27:02,400 Speaker 2: able to for things. I'm like, oh shit, you can't 423 00:27:02,480 --> 00:27:05,639 Speaker 2: remember things for some times. And I'm sure people listening 424 00:27:05,720 --> 00:27:08,840 Speaker 2: to this are like, oh, I can't remember names, which 425 00:27:08,960 --> 00:27:12,719 Speaker 2: is sort of kind of typical age related memory loss. Yes, 426 00:27:12,920 --> 00:27:15,840 Speaker 2: but are there other signs that are clearer that people 427 00:27:15,960 --> 00:27:18,480 Speaker 2: can be on the lookout for, you know, I'm sure, 428 00:27:18,520 --> 00:27:21,879 Speaker 2: as you said, they're varied among so many people. But 429 00:27:22,160 --> 00:27:25,520 Speaker 2: is there any kind of laundry list or how do 430 00:27:25,600 --> 00:27:25,840 Speaker 2: you know? 431 00:27:26,160 --> 00:27:28,520 Speaker 1: I mean, I would say, like, if you start seeing 432 00:27:28,640 --> 00:27:33,240 Speaker 1: someone using shorter sentences or having a harder time finding 433 00:27:33,359 --> 00:27:37,159 Speaker 1: words or not using the right word, that would or 434 00:27:37,320 --> 00:27:39,640 Speaker 1: using the right words, that would be a sign. When 435 00:27:39,680 --> 00:27:43,560 Speaker 1: you see behavior starting just to be so out there, 436 00:27:44,400 --> 00:27:47,440 Speaker 1: you know, not like the person that you have known. 437 00:27:47,760 --> 00:27:51,600 Speaker 1: If you start seeing erratic behavior, that would be a 438 00:27:51,720 --> 00:27:55,240 Speaker 1: sign too. And then there's the movement piece. You know, 439 00:27:55,359 --> 00:27:59,560 Speaker 1: I can't really talk to that because I don't know 440 00:27:59,640 --> 00:28:02,440 Speaker 1: that so well, but I would say that, you know, 441 00:28:03,760 --> 00:28:05,880 Speaker 1: I don't even know what to say about the movement piece. 442 00:28:05,760 --> 00:28:09,480 Speaker 2: But there's some people who experience it, right, and that's 443 00:28:09,560 --> 00:28:12,359 Speaker 2: something that at least you should be aware of. 444 00:28:13,280 --> 00:28:16,680 Speaker 1: And again, I just can't stress enough how important it 445 00:28:16,800 --> 00:28:18,520 Speaker 1: is for us to know it's okay to speak to 446 00:28:18,640 --> 00:28:19,560 Speaker 1: our person's doctor. 447 00:28:19,680 --> 00:28:22,240 Speaker 2: We need to, right, because I imagine a lot of 448 00:28:22,320 --> 00:28:28,760 Speaker 2: people are in denial or make excuses and don't want 449 00:28:28,800 --> 00:28:31,000 Speaker 2: to know, and don't want to know if it's so scary. 450 00:28:31,119 --> 00:28:33,480 Speaker 1: It is so scary, It is so scary. But I 451 00:28:33,640 --> 00:28:38,760 Speaker 1: do really believe that the sooner we know the sooner 452 00:28:38,800 --> 00:28:41,400 Speaker 1: we could put support into place. You know what I 453 00:28:41,880 --> 00:28:45,240 Speaker 1: hear from so many experts, and this is what now 454 00:28:45,360 --> 00:28:48,320 Speaker 1: when you're in your caregiving journey, is that you know 455 00:28:48,440 --> 00:28:52,560 Speaker 1: people wait too long to ask for help or support. 456 00:28:53,360 --> 00:28:57,280 Speaker 2: You learn that, I think yourself, and I'm curious, what 457 00:28:58,200 --> 00:29:01,720 Speaker 2: are the other things the important lessons you've learned, Things 458 00:29:01,760 --> 00:29:04,880 Speaker 2: that you might have done differently, Emma, if you had 459 00:29:05,000 --> 00:29:06,479 Speaker 2: known than what you know now. 460 00:29:07,920 --> 00:29:10,680 Speaker 1: Oh goodness. I mean, I think the biggest one is 461 00:29:10,720 --> 00:29:14,080 Speaker 1: that it's okay to ask for help. I think society 462 00:29:14,120 --> 00:29:19,560 Speaker 1: has really taught us as women that you know, you 463 00:29:20,120 --> 00:29:22,560 Speaker 1: handle it, you do it, you take care of all 464 00:29:22,600 --> 00:29:25,200 Speaker 1: the things. You know, you put everyone else on that list, 465 00:29:25,280 --> 00:29:27,520 Speaker 1: you put yourself to the bottom, you don't complain, you 466 00:29:27,600 --> 00:29:31,080 Speaker 1: get in there, you handle your business. And I think 467 00:29:31,480 --> 00:29:35,200 Speaker 1: I wish you know I've learned. I'm learning to untangle 468 00:29:35,320 --> 00:29:38,680 Speaker 1: that I've always been very like self sufficient, independent, Like 469 00:29:38,800 --> 00:29:40,920 Speaker 1: I grew up with a single mom who was working 470 00:29:41,000 --> 00:29:43,600 Speaker 1: three jobs. Like you know, I knew how to take care. 471 00:29:43,800 --> 00:29:47,680 Speaker 1: I watched her just take care of all the things 472 00:29:47,760 --> 00:29:50,400 Speaker 1: and handle all the things. That was my model. And 473 00:29:52,160 --> 00:29:54,720 Speaker 1: I wish that I would have known that it was 474 00:29:54,920 --> 00:30:00,240 Speaker 1: okay to raise my hand and ask for support and 475 00:30:00,320 --> 00:30:04,040 Speaker 1: that I wasn't a failure because I needed it. And 476 00:30:04,160 --> 00:30:06,360 Speaker 1: I think that is something that I really want other 477 00:30:06,440 --> 00:30:11,920 Speaker 1: caregivers to hear, that we're not failing our person. We 478 00:30:12,080 --> 00:30:14,440 Speaker 1: are if we need help, like we are there. We're 479 00:30:14,480 --> 00:30:19,560 Speaker 1: trying to support them. And in order to sustain this journey, 480 00:30:20,560 --> 00:30:23,200 Speaker 1: we need to be able to rally that support and 481 00:30:23,320 --> 00:30:27,280 Speaker 1: bring that support in family, friends, whatever that looks like. 482 00:30:27,480 --> 00:30:30,840 Speaker 1: It is really important to be able to reach out 483 00:30:30,920 --> 00:30:33,840 Speaker 1: and assemble this team because dementia takes a team of people, 484 00:30:34,360 --> 00:30:36,680 Speaker 1: and people are doing this on their own because they 485 00:30:36,720 --> 00:30:40,360 Speaker 1: have no other option. And I think it's really important 486 00:30:40,440 --> 00:30:42,560 Speaker 1: for family and friends. You know, this book isn't just 487 00:30:42,640 --> 00:30:45,680 Speaker 1: for the caregiver. This book is also for family and 488 00:30:45,760 --> 00:30:48,360 Speaker 1: friends to understand, like this is this is real stuff, 489 00:30:48,880 --> 00:30:51,360 Speaker 1: and what can I do to help? 490 00:30:51,600 --> 00:30:52,560 Speaker 2: How can I show up? 491 00:30:52,640 --> 00:30:54,920 Speaker 1: How can I show up? What can I do? How 492 00:30:55,000 --> 00:30:57,360 Speaker 1: can I be there to support to sort of lift 493 00:30:57,440 --> 00:31:03,160 Speaker 1: this heavy load off of you know, my family, whomever 494 00:31:03,400 --> 00:31:07,120 Speaker 1: who is caring for someone, who's caring for someone? What 495 00:31:07,240 --> 00:31:07,600 Speaker 1: can I do? 496 00:31:07,960 --> 00:31:10,880 Speaker 2: And it's not a sign of weakness, It's actually a 497 00:31:11,000 --> 00:31:15,200 Speaker 2: sign of strength to be able to say I need help. Yeah. 498 00:31:16,200 --> 00:31:19,840 Speaker 2: Another thing you write about is that when you realize 499 00:31:19,880 --> 00:31:23,920 Speaker 2: someone has limited time, that you try to make these 500 00:31:24,160 --> 00:31:28,120 Speaker 2: big gestures. And you write about a big trip you 501 00:31:28,200 --> 00:31:30,960 Speaker 2: were planning with Bruce and your daughters to Mexico, and 502 00:31:32,080 --> 00:31:36,200 Speaker 2: a really good friend who could be completely honest with 503 00:31:36,320 --> 00:31:40,040 Speaker 2: you told you it was a mistake. Tell me about 504 00:31:40,120 --> 00:31:43,920 Speaker 2: that and what you learned from that experience. 505 00:31:45,040 --> 00:31:47,040 Speaker 1: Yeah, I mean, I think that is why it's so 506 00:31:47,200 --> 00:31:52,920 Speaker 1: important to have a friend who understands what dementia is, 507 00:31:53,120 --> 00:31:57,600 Speaker 1: what this journey looks like. Franny, who is just one 508 00:31:57,640 --> 00:32:01,200 Speaker 1: of my dearest friends. Her has been Paul had been 509 00:32:01,280 --> 00:32:04,880 Speaker 1: diagnosed with young onset Alzheimer's, and she was a few 510 00:32:05,080 --> 00:32:08,320 Speaker 1: steps ahead of me. Paul was already in his disease 511 00:32:08,760 --> 00:32:11,640 Speaker 1: at that time. Bruce didn't have a diagnosis, but we 512 00:32:11,960 --> 00:32:14,440 Speaker 1: knew something was happening. We didn't know what it was. 513 00:32:15,320 --> 00:32:18,880 Speaker 1: And you know, we were given a cautious sort of 514 00:32:19,040 --> 00:32:22,680 Speaker 1: green light to go on this trip that I felt 515 00:32:22,960 --> 00:32:26,960 Speaker 1: could possibly be one of our last trips as a family, 516 00:32:27,120 --> 00:32:31,640 Speaker 1: because I knew how complicated it was at home, right, 517 00:32:31,720 --> 00:32:35,280 Speaker 1: you know, And I thought, well, okay, we've been invited 518 00:32:35,360 --> 00:32:38,160 Speaker 1: on this trip it's just to Mexico. We live, you know, 519 00:32:38,480 --> 00:32:40,880 Speaker 1: on the West coast. This is going to be an easy, 520 00:32:41,440 --> 00:32:45,640 Speaker 1: doable trip. And you know, I'd planned it. I'd got it, 521 00:32:45,680 --> 00:32:49,040 Speaker 1: every eye crossed, every tea. And we were about a 522 00:32:49,080 --> 00:32:51,400 Speaker 1: week away and I was speaking to Franny about this 523 00:32:51,520 --> 00:32:54,400 Speaker 1: trip that we were going to go on, and Frannie 524 00:32:54,520 --> 00:32:57,160 Speaker 1: was like, no, no, no, no, no, no, don't do that. 525 00:32:57,760 --> 00:32:59,920 Speaker 1: You know, this is not going to be the trip 526 00:33:00,080 --> 00:33:04,040 Speaker 1: that you're envisioning. You can't take Bruce out of his 527 00:33:04,200 --> 00:33:06,760 Speaker 1: surroundings and just think like it's just magically going to 528 00:33:07,080 --> 00:33:11,920 Speaker 1: be okay elsewhere. And you know, she was right, And 529 00:33:11,960 --> 00:33:13,720 Speaker 1: I said, you know what, Okay, I'm going to cancel 530 00:33:13,760 --> 00:33:16,320 Speaker 1: this trip. And she's like, you're not canceling your trip. 531 00:33:17,120 --> 00:33:19,880 Speaker 1: You and the girls are going to go. And you 532 00:33:20,000 --> 00:33:22,200 Speaker 1: know they they want they've been wanting to do this. 533 00:33:22,960 --> 00:33:26,960 Speaker 1: Bruce would want you to do this. And I made 534 00:33:27,040 --> 00:33:29,640 Speaker 1: that call that came with so much guilt. 535 00:33:29,840 --> 00:33:32,720 Speaker 2: I was going to say, gosh, that must have been agonizing. 536 00:33:32,800 --> 00:33:36,760 Speaker 1: It was agonizing. It was agonizing. But what was really 537 00:33:36,880 --> 00:33:40,640 Speaker 1: beautiful about that was that, you know, the girls got 538 00:33:40,680 --> 00:33:43,160 Speaker 1: to see me out of this caregiving role and they 539 00:33:43,240 --> 00:33:47,800 Speaker 1: got to just experience me as their mom on that trip, 540 00:33:48,320 --> 00:33:51,040 Speaker 1: you know, like I was able to Sorry, I'm getting 541 00:33:51,080 --> 00:33:56,840 Speaker 1: emotional about it, but that's okay. You know, everything you 542 00:33:56,960 --> 00:33:59,920 Speaker 1: have to plan, everything is so planned, you have to 543 00:34:00,200 --> 00:34:04,120 Speaker 1: think about everything. And on that trip, I was able 544 00:34:04,280 --> 00:34:08,160 Speaker 1: just to wake up with them and go into the 545 00:34:08,280 --> 00:34:11,520 Speaker 1: ocean and get on our bikes and go for a 546 00:34:11,640 --> 00:34:14,120 Speaker 1: bike ride without having to think about, Okay, well if 547 00:34:14,160 --> 00:34:18,200 Speaker 1: I do this, who was watching Bruce? Who are we? 548 00:34:18,480 --> 00:34:18,520 Speaker 2: Like? 549 00:34:18,920 --> 00:34:21,120 Speaker 1: You just have to think about all of these things. 550 00:34:21,239 --> 00:34:25,719 Speaker 1: And they just really got to see me just be me. 551 00:34:25,920 --> 00:34:29,120 Speaker 1: And of course my mind was consistently with my husband 552 00:34:29,200 --> 00:34:32,120 Speaker 1: back home and everything okay, but like you know, and 553 00:34:32,239 --> 00:34:36,319 Speaker 1: Franny said, she's like, just be on just be with them, 554 00:34:36,760 --> 00:34:39,080 Speaker 1: just be in that moment of just like being in 555 00:34:39,160 --> 00:34:42,200 Speaker 1: the ocean, being on the beach, walking with them, And 556 00:34:42,320 --> 00:34:44,520 Speaker 1: that is what I did, and it was it was 557 00:34:44,680 --> 00:34:47,879 Speaker 1: really like the respite that the girls and I both needed. 558 00:34:47,960 --> 00:34:51,200 Speaker 2: And so freeing for you. And obviously it doesn't mean 559 00:34:51,280 --> 00:34:54,719 Speaker 2: you weren't thinking about Bruce, but to almost be able 560 00:34:54,800 --> 00:34:58,360 Speaker 2: to exhale for a second, yeah, and we need important 561 00:34:58,400 --> 00:35:00,880 Speaker 2: for the girls too, and important. 562 00:35:00,440 --> 00:35:02,759 Speaker 1: For them, you know, they were living this world too. 563 00:35:03,400 --> 00:35:05,200 Speaker 1: They needed a they needed. 564 00:35:05,200 --> 00:35:07,520 Speaker 2: A break, and how was it for them? How did 565 00:35:07,600 --> 00:35:11,719 Speaker 2: you help them through it? Because gosh, it's hard enough 566 00:35:11,840 --> 00:35:16,440 Speaker 2: to be a parent, but then to be a parent 567 00:35:17,160 --> 00:35:19,680 Speaker 2: with one going through this. You know, my kids were 568 00:35:19,719 --> 00:35:21,960 Speaker 2: so little when Jay got sick. They were five and 569 00:35:22,080 --> 00:35:25,000 Speaker 2: one when he was diagnosed, and as I mentioned, he 570 00:35:25,160 --> 00:35:27,480 Speaker 2: was only sick for nine months before he died. But 571 00:35:28,239 --> 00:35:32,480 Speaker 2: even kind of trying to have some semblance of normalcy 572 00:35:33,160 --> 00:35:39,359 Speaker 2: for me and them was so traumatizing, honestly, and maybe 573 00:35:39,440 --> 00:35:43,839 Speaker 2: that's too strong a word, but really challenging. And now 574 00:35:44,080 --> 00:35:47,080 Speaker 2: this is what Ronald Reagan said, you know, this is 575 00:35:47,160 --> 00:35:51,879 Speaker 2: this long goodbye, and so how have you helped them 576 00:35:52,680 --> 00:35:57,879 Speaker 2: and prepared them to see their dad this way? 577 00:35:59,200 --> 00:36:01,759 Speaker 1: So when the girl roles, the girls were eight and 578 00:36:01,880 --> 00:36:05,279 Speaker 1: ten when Bruce was diagnosed, and you know, at that point, 579 00:36:05,400 --> 00:36:08,120 Speaker 1: we knew something was coming, We knew something was in 580 00:36:08,200 --> 00:36:09,919 Speaker 1: the water, We knew we were going to be getting 581 00:36:09,920 --> 00:36:12,879 Speaker 1: a diagnosis at some point. You know, what I had 582 00:36:13,480 --> 00:36:15,920 Speaker 1: learned from one of the specialists that are the experts 583 00:36:15,960 --> 00:36:18,839 Speaker 1: that I bring into the book about how to communicate 584 00:36:18,960 --> 00:36:22,560 Speaker 1: with you know, how how I could communicate with them, 585 00:36:22,600 --> 00:36:25,840 Speaker 1: And I think what has been really important is that 586 00:36:26,080 --> 00:36:29,279 Speaker 1: I've always been very honest with them, you know, in 587 00:36:29,360 --> 00:36:34,719 Speaker 1: an age appropriate way, and when we had received the diagnosis, 588 00:36:34,800 --> 00:36:37,000 Speaker 1: I was able to tell them, you know, this is 589 00:36:37,160 --> 00:36:40,120 Speaker 1: the disease that you know your dad has. It's called 590 00:36:40,160 --> 00:36:42,480 Speaker 1: front of temporal dementia. And they're like, you know, I 591 00:36:42,520 --> 00:36:46,759 Speaker 1: said it's FTT. They're like, f D f d T. 592 00:36:47,040 --> 00:36:49,080 Speaker 1: I said, no FTD. So they came up with this 593 00:36:49,200 --> 00:36:52,920 Speaker 1: acronym of fantastic Turtles dancing, you know, to be able 594 00:36:53,000 --> 00:36:57,320 Speaker 1: to just you know, you know that that is that 595 00:36:57,480 --> 00:37:01,319 Speaker 1: seems right for their age, right, and you know, from 596 00:37:01,440 --> 00:37:04,760 Speaker 1: there I gave them sort of just like a brief 597 00:37:04,880 --> 00:37:09,400 Speaker 1: description of what FTD is and how it's affecting their 598 00:37:09,520 --> 00:37:12,880 Speaker 1: dad and his brain. And from there, you wait. I 599 00:37:13,000 --> 00:37:16,719 Speaker 1: waited to see if they had any other questions, and 600 00:37:16,840 --> 00:37:18,880 Speaker 1: they really didn't. I think it was just like a 601 00:37:19,000 --> 00:37:20,920 Speaker 1: sense of RELI there was like a sense of relief. 602 00:37:21,200 --> 00:37:23,080 Speaker 2: I was going to say, Emma, because it must have 603 00:37:23,160 --> 00:37:27,400 Speaker 2: been even harder before you had a diagnosis, because you 604 00:37:27,560 --> 00:37:31,839 Speaker 2: were confused. So I can only imagine the girls were 605 00:37:32,040 --> 00:37:37,960 Speaker 2: very confused, and that must have been one of the 606 00:37:38,040 --> 00:37:41,319 Speaker 2: hardest periods, right trying to figure out what the heck 607 00:37:41,440 --> 00:37:41,960 Speaker 2: is going on? 608 00:37:42,440 --> 00:37:46,440 Speaker 1: Those early days are really hard. They're very complicated. It's 609 00:37:46,560 --> 00:37:49,040 Speaker 1: very hard to manage. It was hard for me to 610 00:37:49,120 --> 00:37:52,440 Speaker 1: manage myself, let alone how to you know, figure out 611 00:37:52,480 --> 00:37:54,320 Speaker 1: what to do with the kids and how you know 612 00:37:54,480 --> 00:37:56,200 Speaker 1: this again, there was just a lot of even smoke 613 00:37:56,239 --> 00:37:59,080 Speaker 1: and mirrors happening within our own home. To protect them, 614 00:37:59,440 --> 00:38:02,360 Speaker 1: you know, from what was occurring, or to try and 615 00:38:03,080 --> 00:38:07,040 Speaker 1: you know, move the conversation if something just wasn't landing 616 00:38:07,160 --> 00:38:10,239 Speaker 1: right or seeming right. But you know, I have to 617 00:38:10,320 --> 00:38:14,560 Speaker 1: say for our girls now because again I think, you know, 618 00:38:14,600 --> 00:38:16,960 Speaker 1: we want to protect our kids and you don't want 619 00:38:17,000 --> 00:38:19,759 Speaker 1: to tell sometimes the hard truth. But I think it's 620 00:38:19,960 --> 00:38:23,759 Speaker 1: very important. I think there's a lot of safety around that. 621 00:38:23,880 --> 00:38:26,320 Speaker 1: I think they have a lot of safety knowing and 622 00:38:26,480 --> 00:38:29,200 Speaker 1: what I've always said to them, if anything changes, I'm 623 00:38:29,239 --> 00:38:31,680 Speaker 1: going to let you know, or if you have any questions, 624 00:38:32,000 --> 00:38:34,040 Speaker 1: you know, you can always come to me. I'm always 625 00:38:34,080 --> 00:38:37,440 Speaker 1: going to tell you the truth. And I think that 626 00:38:37,560 --> 00:38:41,480 Speaker 1: has been really helpful. I think that they have settled 627 00:38:41,560 --> 00:38:44,680 Speaker 1: into the what is I mean, they are growing up 628 00:38:45,160 --> 00:38:48,160 Speaker 1: seeing this disease progress in their father. 629 00:38:48,680 --> 00:38:52,240 Speaker 2: Long was it Emma Between the time Bruce first started 630 00:38:52,320 --> 00:38:57,719 Speaker 2: to exhibit symptoms and when you got a definitive diagnosis. 631 00:38:58,239 --> 00:39:01,719 Speaker 1: That is the thing about this disease. It's so great. 632 00:39:01,960 --> 00:39:04,520 Speaker 2: You call it an ambiguous loss, right. 633 00:39:04,840 --> 00:39:08,240 Speaker 1: It's just great to know, like when did this disease 634 00:39:08,360 --> 00:39:11,680 Speaker 1: start to rear its ugly head? And like where does 635 00:39:11,760 --> 00:39:13,560 Speaker 1: my husband start to stop? 636 00:39:14,400 --> 00:39:14,960 Speaker 2: I don't know. 637 00:39:15,800 --> 00:39:17,560 Speaker 1: You know what I hear, and I know now I'm 638 00:39:17,600 --> 00:39:21,440 Speaker 1: going back to Alzheimer's. But like with dementia, what I've 639 00:39:21,560 --> 00:39:26,600 Speaker 1: learned from doctor Richard Isaacson is that dementia can set 640 00:39:26,640 --> 00:39:30,000 Speaker 1: into your brain ten twenty thirty years before you even 641 00:39:30,080 --> 00:39:34,239 Speaker 1: receive a diagnosis. So how do you know? 642 00:39:34,760 --> 00:39:36,040 Speaker 2: So I don't know. 643 00:39:36,239 --> 00:39:37,960 Speaker 1: It's really hard for me to answer that. 644 00:39:38,320 --> 00:39:41,600 Speaker 2: I think when I first met you, we talked about 645 00:39:43,239 --> 00:39:47,560 Speaker 2: having an extended family. You know, Bruce has a very 646 00:39:47,640 --> 00:39:51,200 Speaker 2: good relationship with his ex wife, dem Moore and his 647 00:39:51,600 --> 00:39:56,359 Speaker 2: daughters from that marriage, and I know that you all 648 00:39:56,520 --> 00:39:59,719 Speaker 2: have really worked hard to help each other. I also 649 00:39:59,840 --> 00:40:03,720 Speaker 2: know that ultimately it does fall on your shoulders because 650 00:40:03,760 --> 00:40:07,720 Speaker 2: you are Bruce's wife. That's right, But tell me about 651 00:40:08,600 --> 00:40:14,440 Speaker 2: that family circle that exists and how that has been 652 00:40:14,600 --> 00:40:19,160 Speaker 2: helpful to you, because it might model behavior for other families. 653 00:40:19,880 --> 00:40:22,400 Speaker 1: I mean, listen, I mean I think if you know 654 00:40:22,719 --> 00:40:26,520 Speaker 1: of Bruce and Demi and their divorce and how they 655 00:40:26,640 --> 00:40:29,840 Speaker 1: handled that and you know, always putting their children first 656 00:40:30,080 --> 00:40:32,680 Speaker 1: was just of the utmost importance, and how they've been 657 00:40:32,719 --> 00:40:34,680 Speaker 1: able to sort of come out the other end of 658 00:40:35,200 --> 00:40:39,960 Speaker 1: you know, having a relationship built on respect and admiration. 659 00:40:40,719 --> 00:40:43,600 Speaker 1: You know, they really set us up for success, right 660 00:40:43,960 --> 00:40:46,120 Speaker 1: Like you know, if we could just start there, you 661 00:40:46,280 --> 00:40:49,400 Speaker 1: hear about people divorcing and that's already you know that 662 00:40:49,480 --> 00:40:52,080 Speaker 1: because turn can turn into a hot mess. But I 663 00:40:52,160 --> 00:40:56,839 Speaker 1: think that what the foundation that they've laid has really 664 00:40:57,000 --> 00:41:01,280 Speaker 1: helped us to be able to walk now this path 665 00:41:01,680 --> 00:41:03,320 Speaker 1: where at the end of the day, you know, we 666 00:41:03,440 --> 00:41:07,759 Speaker 1: all have our own special, unique relationship with Bruce, and 667 00:41:07,960 --> 00:41:11,080 Speaker 1: we all show up for him just to be able 668 00:41:11,160 --> 00:41:15,200 Speaker 1: to continue to support him and love him. And you know, 669 00:41:15,320 --> 00:41:19,320 Speaker 1: everyone has their own way of doing that, and you know, 670 00:41:19,400 --> 00:41:21,040 Speaker 1: at the end of the day, I think what's been 671 00:41:21,120 --> 00:41:27,040 Speaker 1: beautiful is that they respect what I'm doing, how I 672 00:41:27,239 --> 00:41:30,080 Speaker 1: care for Bruce, and they come in to be able 673 00:41:30,160 --> 00:41:31,200 Speaker 1: to support that. 674 00:41:31,960 --> 00:41:33,560 Speaker 2: But you are the captain of the ship. 675 00:41:34,480 --> 00:41:37,640 Speaker 1: Yeah, you know, this is happening in our home, and 676 00:41:39,480 --> 00:41:44,040 Speaker 1: we have two young children, and I'm a control freak, 677 00:41:45,360 --> 00:41:50,200 Speaker 1: So yeah, so there's that, But yeah, I mean they 678 00:41:50,680 --> 00:41:54,680 Speaker 1: I'm so blessed because I know there's so many families 679 00:41:54,840 --> 00:41:58,440 Speaker 1: that even couldn't be united from the start, but can 680 00:41:58,840 --> 00:42:01,000 Speaker 1: the idea of care and what that care looks like 681 00:42:01,160 --> 00:42:02,080 Speaker 1: and can get. 682 00:42:02,200 --> 00:42:07,800 Speaker 2: Very hard, oh, very hard. I think situations like this 683 00:42:08,200 --> 00:42:13,800 Speaker 2: I've seen tear families apart, with resentment, people feeling like 684 00:42:14,680 --> 00:42:18,520 Speaker 2: one person is carrying the lion's share of the responsibility, 685 00:42:19,200 --> 00:42:23,600 Speaker 2: anger when people don't live nearby and aren't carrying their weight, 686 00:42:24,040 --> 00:42:32,040 Speaker 2: and it can really be an incredibly divisive and difficult 687 00:42:32,200 --> 00:42:36,240 Speaker 2: time for families. And you know, gosh, I think everyone 688 00:42:36,360 --> 00:42:40,279 Speaker 2: listening or watching this has seen a situation like this, 689 00:42:40,680 --> 00:42:43,960 Speaker 2: or when you know an aging parent or an alien 690 00:42:44,120 --> 00:42:48,160 Speaker 2: parent or spouse. Really it's mostly parents with the adult children, 691 00:42:48,239 --> 00:42:52,439 Speaker 2: I think. But it does create a lot of animosity 692 00:42:53,480 --> 00:42:58,520 Speaker 2: among people. And this is a different situation, I think. 693 00:42:58,719 --> 00:43:03,840 Speaker 2: But you could see kind of some anger surfacing. But 694 00:43:03,960 --> 00:43:06,640 Speaker 2: you all have not gone down that road. 695 00:43:06,880 --> 00:43:09,239 Speaker 1: No, we haven't, and I don't see us if we've 696 00:43:09,280 --> 00:43:11,800 Speaker 1: gotten this far. I think I think we're good. I 697 00:43:11,880 --> 00:43:12,640 Speaker 1: think we're golden. 698 00:43:13,320 --> 00:43:16,160 Speaker 2: You talk about the mood you bring into the room 699 00:43:16,239 --> 00:43:19,680 Speaker 2: as your emotional WiFi, which I love that term. But 700 00:43:20,000 --> 00:43:21,279 Speaker 2: to explain what you mean by that. 701 00:43:21,920 --> 00:43:26,000 Speaker 1: Yeah, I mean our family. Our people are feel our energy. 702 00:43:26,239 --> 00:43:30,320 Speaker 1: You know, especially if someone going through the dementia journey. 703 00:43:31,080 --> 00:43:35,120 Speaker 1: If you are bringing the high stress and anxiety and 704 00:43:36,000 --> 00:43:39,520 Speaker 1: worry and anger and all the things into that room, 705 00:43:39,920 --> 00:43:42,960 Speaker 1: your person is going to pick up on that, like 706 00:43:43,160 --> 00:43:46,600 Speaker 1: your children will, right. You know, they are connected to 707 00:43:47,120 --> 00:43:53,200 Speaker 1: our emotional WiFi and mine was had a really spotty 708 00:43:53,239 --> 00:43:56,840 Speaker 1: connection for a long time, and you know, my husband 709 00:43:56,880 --> 00:43:59,480 Speaker 1: could feel it, my children can feel it. This is 710 00:43:59,600 --> 00:44:02,799 Speaker 1: you know, iired of having support. You know, I think 711 00:44:03,040 --> 00:44:07,120 Speaker 1: people don't understand what is happening behind closed doors. You 712 00:44:07,200 --> 00:44:12,640 Speaker 1: know how hard it is for caregivers. How Hi, It's 713 00:44:12,760 --> 00:44:18,240 Speaker 1: just such a high stress position, So it's very normal 714 00:44:18,440 --> 00:44:20,880 Speaker 1: for our wi fi to be buffering. 715 00:44:27,239 --> 00:44:29,640 Speaker 2: Hi. Everyone, it's me Katie Couric. You know, if you've 716 00:44:29,680 --> 00:44:32,399 Speaker 2: been following me on social media, you know I love 717 00:44:32,480 --> 00:44:35,560 Speaker 2: to cook, or at least try, especially alongside some of 718 00:44:35,680 --> 00:44:39,360 Speaker 2: my favorite chefs and foodies like Benny Blanco, Jake Cohen, 719 00:44:39,480 --> 00:44:43,800 Speaker 2: Lighty Hoyke, Alison Roman, and Ina Garten. So I started 720 00:44:43,840 --> 00:44:47,280 Speaker 2: a free newsletter called good Taste to share recipes, tips 721 00:44:47,400 --> 00:44:51,000 Speaker 2: and kitchen mustaves. Just sign up at Katiecuric dot com 722 00:44:51,400 --> 00:44:54,600 Speaker 2: slash good Taste. That's k A t I E c 723 00:44:54,840 --> 00:44:58,680 Speaker 2: o u r ic dot com slash good Taste. I 724 00:44:58,840 --> 00:45:11,239 Speaker 2: promise your tas spuds will be happy you did. You 725 00:45:11,480 --> 00:45:16,080 Speaker 2: talk about sort of making sure that you take care 726 00:45:16,120 --> 00:45:18,279 Speaker 2: of your health, and a lot of people use the 727 00:45:18,360 --> 00:45:22,239 Speaker 2: analogy of putting your oxygen mask on first before you 728 00:45:22,360 --> 00:45:26,720 Speaker 2: help your children. And you know, there's pretty stark data 729 00:45:27,560 --> 00:45:32,160 Speaker 2: about the impact caregiving has on people's sell, isn't there. 730 00:45:32,680 --> 00:45:36,440 Speaker 1: Yeah. I mean, Bruce's neurologist gave me this really incredible 731 00:45:36,600 --> 00:45:41,120 Speaker 1: wake up call that thirty percent of caregivers are dying 732 00:45:41,200 --> 00:45:44,920 Speaker 1: before the person that they're caring for. It was startling 733 00:45:45,280 --> 00:45:48,239 Speaker 1: because then you think that forty percent of caregivers they're 734 00:45:48,280 --> 00:45:51,760 Speaker 1: not able to make their own medical appointments right because 735 00:45:51,840 --> 00:45:55,080 Speaker 1: they are the last on the list, or they don't 736 00:45:55,120 --> 00:45:57,640 Speaker 1: have support at home to be able to go get 737 00:45:57,719 --> 00:46:02,799 Speaker 1: their colonoscopy, their a graham, they're just general check up. 738 00:46:03,680 --> 00:46:07,080 Speaker 1: So that was just a startling statistic to me. It 739 00:46:07,200 --> 00:46:10,000 Speaker 1: was a wake up call and I was so happy 740 00:46:10,200 --> 00:46:12,600 Speaker 1: it's startling as it was, it was really a wake 741 00:46:12,680 --> 00:46:15,680 Speaker 1: up call, and I was so happy that this neurologist 742 00:46:15,760 --> 00:46:18,080 Speaker 1: had told me that so that I could really just 743 00:46:18,680 --> 00:46:21,200 Speaker 1: get back into my senses of like, Okay, I'm not 744 00:46:21,280 --> 00:46:24,320 Speaker 1: going to have our children lose both of their parents. 745 00:46:24,200 --> 00:46:27,160 Speaker 2: And not taking care of myself doesn't do anybody any good. 746 00:46:27,440 --> 00:46:29,640 Speaker 1: And how can I then continue to show up for 747 00:46:29,760 --> 00:46:33,400 Speaker 1: the person that I love if I'm not caring for myself. 748 00:46:33,560 --> 00:46:36,640 Speaker 1: So I really needed to just to figure out a 749 00:46:36,800 --> 00:46:41,120 Speaker 1: new way to be able to start making my doctor's 750 00:46:41,160 --> 00:46:47,239 Speaker 1: appointments again and exercising, my goodness, just exercising, eating better, 751 00:46:47,640 --> 00:46:51,839 Speaker 1: you know, trying to get better sleep, which was very 752 00:46:51,880 --> 00:46:53,960 Speaker 1: difficult as a caregiver to do that. But I just 753 00:46:54,040 --> 00:46:56,880 Speaker 1: think that it's important to just put these things on 754 00:46:57,000 --> 00:47:00,239 Speaker 1: our radar and again to be able to just aren't 755 00:47:00,280 --> 00:47:03,560 Speaker 1: calling in the support so that you know, you can 756 00:47:03,719 --> 00:47:06,120 Speaker 1: go to your doctor's appointment, you know, like I have 757 00:47:06,160 --> 00:47:08,960 Speaker 1: a medical book for myself now of that you know, 758 00:47:09,040 --> 00:47:12,400 Speaker 1: whenever I am making a doctor's appointment for Bruce or 759 00:47:12,480 --> 00:47:15,400 Speaker 1: our daughters, that I always just go back to my 760 00:47:15,560 --> 00:47:18,040 Speaker 1: medical book to make sure that like, okay, this was 761 00:47:18,080 --> 00:47:20,520 Speaker 1: when my last pap smear was and this is when 762 00:47:20,600 --> 00:47:23,640 Speaker 1: my last you know, dental appointment was so that I 763 00:47:23,760 --> 00:47:27,080 Speaker 1: can also just keep an eye to make sure that 764 00:47:27,200 --> 00:47:29,200 Speaker 1: I am not forgetting myself. 765 00:47:30,000 --> 00:47:32,760 Speaker 2: You know, we talked about some of the early symptoms emma, 766 00:47:33,320 --> 00:47:35,800 Speaker 2: and it makes me think, you know, early detection for 767 00:47:36,000 --> 00:47:41,120 Speaker 2: cancer is so critically important because if you can eradicate 768 00:47:41,200 --> 00:47:44,719 Speaker 2: the disease before it spreads, you know, your survival rate. 769 00:47:44,800 --> 00:47:48,000 Speaker 2: It's just really the difference between life and death oftentimes. 770 00:47:48,600 --> 00:47:53,000 Speaker 2: But with FTD, knowing you have it early, there still 771 00:47:53,200 --> 00:47:58,000 Speaker 2: isn't much that can be done in terms of modern medicine. 772 00:47:58,160 --> 00:47:59,279 Speaker 2: Is there no. 773 00:47:59,560 --> 00:48:04,520 Speaker 1: I mean, you can manage the symptoms with medications, but 774 00:48:05,920 --> 00:48:10,320 Speaker 1: there is no treatment for FTD. And I think that 775 00:48:10,840 --> 00:48:14,080 Speaker 1: is why I think this awareness piece is so important, 776 00:48:14,120 --> 00:48:18,520 Speaker 1: because we want people to be diagnosed earlier so that 777 00:48:18,600 --> 00:48:21,480 Speaker 1: they can get into the clinical trials that are there. 778 00:48:22,239 --> 00:48:25,880 Speaker 1: You know, they're really concentrating right now on the genetic families, 779 00:48:26,120 --> 00:48:30,440 Speaker 1: because usually with genetic families, this is like it's running 780 00:48:30,480 --> 00:48:35,440 Speaker 1: in that line, right you see a grandparent to a 781 00:48:35,560 --> 00:48:38,920 Speaker 1: mother to you know, and you can get tested. I mean, 782 00:48:39,120 --> 00:48:43,880 Speaker 1: that's a whole other it's not my area, but you know, 783 00:48:44,000 --> 00:48:46,520 Speaker 1: if the person wants to get tested to see if 784 00:48:46,520 --> 00:48:50,560 Speaker 1: they might have this gene, then that is when these 785 00:48:50,680 --> 00:48:54,160 Speaker 1: trials really come in two hands into place, so that 786 00:48:54,280 --> 00:48:58,040 Speaker 1: they can now be in the trial to sort of 787 00:48:58,200 --> 00:49:03,120 Speaker 1: help as they marched through to the disease. 788 00:49:03,280 --> 00:49:08,759 Speaker 2: But also I think increased awareness can lead to more funding, right, 789 00:49:09,120 --> 00:49:13,400 Speaker 2: And I think the brain has been sort of as 790 00:49:13,920 --> 00:49:19,160 Speaker 2: a loss leader in terms of medical research, primarily because 791 00:49:19,560 --> 00:49:22,080 Speaker 2: the brain is very hard has been very hard to study, 792 00:49:22,400 --> 00:49:24,120 Speaker 2: you know, like other parts of the body, you can't 793 00:49:24,120 --> 00:49:28,680 Speaker 2: get tissue samples for example. And you know, now I 794 00:49:28,760 --> 00:49:33,399 Speaker 2: think with modern technology and brain scans, there is much 795 00:49:33,560 --> 00:49:37,239 Speaker 2: more we're learning about how the brain operates. And then 796 00:49:37,280 --> 00:49:42,960 Speaker 2: there's the bloody blood brain barrier bloody meaning damn blood 797 00:49:43,040 --> 00:49:47,200 Speaker 2: brain barrier that prevents medicines from reaching the brain, which 798 00:49:47,280 --> 00:49:51,600 Speaker 2: is a whole other issue. But do you feel like 799 00:49:52,040 --> 00:49:56,840 Speaker 2: there's exciting research going on with all these forms of 800 00:49:57,040 --> 00:50:00,839 Speaker 2: dementia because I know that it it's been a really 801 00:50:01,000 --> 00:50:03,719 Speaker 2: tough nut to crack all of these diseases. 802 00:50:04,200 --> 00:50:07,279 Speaker 1: I think we're so much closer than we think, you know, 803 00:50:07,400 --> 00:50:11,520 Speaker 1: I think that there's so much more talk and awareness 804 00:50:11,600 --> 00:50:14,200 Speaker 1: around brain health and that you know, there are actually 805 00:50:14,360 --> 00:50:17,319 Speaker 1: positive things that we can be doing today to care 806 00:50:17,440 --> 00:50:20,800 Speaker 1: for our brain that can really sort of change possibly 807 00:50:20,920 --> 00:50:23,680 Speaker 1: change the outcome, or at least if it's not going 808 00:50:23,719 --> 00:50:26,600 Speaker 1: to change the outcome, at least it might hold hold 809 00:50:26,680 --> 00:50:28,800 Speaker 1: it back a little bit so that we wait for, 810 00:50:29,239 --> 00:50:31,560 Speaker 1: you know, a medicine to sort of come in to 811 00:50:31,640 --> 00:50:35,840 Speaker 1: be able to hopefully cure reverse, slow down, whatever that 812 00:50:36,000 --> 00:50:39,920 Speaker 1: might be. I was at a conference in Amsterdam last 813 00:50:40,040 --> 00:50:43,120 Speaker 1: year called the is FTD and it brought together you know, 814 00:50:43,280 --> 00:50:47,920 Speaker 1: seven hundred and fifty researchers, scientists who are working in 815 00:50:48,040 --> 00:50:51,080 Speaker 1: the FTD field I know, all around the world and 816 00:50:51,200 --> 00:50:55,680 Speaker 1: to be able just to hear the exciting progress, you know, 817 00:50:55,840 --> 00:50:58,880 Speaker 1: progress is being made, and I want people to know that, 818 00:50:59,200 --> 00:51:01,560 Speaker 1: you know, people aren't just sitting there twiddling their thumbs. 819 00:51:01,960 --> 00:51:05,880 Speaker 1: You know, people are really they they are really rolling 820 00:51:05,960 --> 00:51:10,600 Speaker 1: up their sleeves and I am really hopeful that there 821 00:51:10,640 --> 00:51:13,440 Speaker 1: will be a breakthrough and that you know, what I 822 00:51:13,640 --> 00:51:16,440 Speaker 1: just hope and want for the next family is that, 823 00:51:19,280 --> 00:51:23,520 Speaker 1: you know, to go into that diagnosis appointment and instead 824 00:51:23,520 --> 00:51:25,440 Speaker 1: of hearing that there is no hope, there is nothing 825 00:51:25,480 --> 00:51:30,040 Speaker 1: that we can do, that they'll say, here is here 826 00:51:30,200 --> 00:51:33,240 Speaker 1: is a treatment. Here is something, here is some support. 827 00:51:33,360 --> 00:51:35,000 Speaker 1: You know, that is just what I want to see. 828 00:51:35,239 --> 00:51:39,040 Speaker 1: This just this different outcome. And I really do believe 829 00:51:39,680 --> 00:51:43,840 Speaker 1: that we we are getting there. I have hope in 830 00:51:43,920 --> 00:51:47,680 Speaker 1: that I trust that I know this community and and 831 00:51:47,800 --> 00:51:48,680 Speaker 1: they're in it to win it. 832 00:51:50,400 --> 00:51:53,080 Speaker 2: I know that you talk about what you can do now, 833 00:51:53,239 --> 00:51:57,360 Speaker 2: and the Mediterranean diet is something that's really important. I 834 00:51:57,560 --> 00:52:02,279 Speaker 2: interviewed doctor Bruce Yankner from Harvard Medical School, who wrote 835 00:52:02,320 --> 00:52:05,800 Speaker 2: a paper that was published in Nature on August sixth. 836 00:52:06,400 --> 00:52:09,480 Speaker 2: You can tell I just interviewed him to say that 837 00:52:10,200 --> 00:52:13,719 Speaker 2: my head, and it was fascinating the role of lithium, 838 00:52:14,040 --> 00:52:18,000 Speaker 2: sort of this organic lithium that exists in your brain 839 00:52:18,120 --> 00:52:22,040 Speaker 2: and the fact that these amyloid deposits and these other 840 00:52:22,520 --> 00:52:26,440 Speaker 2: protein taul clusters, you know, that they absorbed the lithium. 841 00:52:27,160 --> 00:52:32,200 Speaker 2: And they were able to do autopsies on brains at 842 00:52:32,920 --> 00:52:36,640 Speaker 2: Institute in Chicago who they had tracked with Alzheimer's and 843 00:52:36,719 --> 00:52:41,000 Speaker 2: they saw this lithium depletion in most of these brains. 844 00:52:41,719 --> 00:52:46,760 Speaker 2: And when they gave in mice models lithium to the mice, 845 00:52:47,200 --> 00:52:52,239 Speaker 2: a specific kind of lithium, their memories returned and it 846 00:52:52,560 --> 00:52:57,880 Speaker 2: was really amazing and exciting, and now he's trying to 847 00:52:58,000 --> 00:53:02,160 Speaker 2: do clinical trials on human incredible, but he is worried 848 00:53:02,160 --> 00:53:06,160 Speaker 2: about NIH funding. And I'm sure that's something that you've 849 00:53:06,200 --> 00:53:09,400 Speaker 2: been reading about with a lot of alarm as I have, 850 00:53:09,680 --> 00:53:14,560 Speaker 2: since I care so deeply about medical research, specifically cancer research, 851 00:53:15,320 --> 00:53:19,200 Speaker 2: and I just attended a rally for medical research in Washington, 852 00:53:19,280 --> 00:53:24,279 Speaker 2: D C. This week, and I cannot understand why our 853 00:53:24,400 --> 00:53:30,480 Speaker 2: most valuable resources are fellow humans, could not be seen 854 00:53:31,080 --> 00:53:34,960 Speaker 2: as important to keep them healthy and to come up 855 00:53:35,040 --> 00:53:37,960 Speaker 2: with better treatments and a cure for many of these 856 00:53:38,080 --> 00:53:40,640 Speaker 2: diseases that take people way too soon. 857 00:53:41,400 --> 00:53:44,279 Speaker 1: Yeah, I mean that has been really hard. It's been 858 00:53:44,320 --> 00:53:47,200 Speaker 1: a hard pill to swallow to watch that, you know, 859 00:53:47,360 --> 00:53:51,520 Speaker 1: we again like we're we are. There is such momentum 860 00:53:51,719 --> 00:53:55,600 Speaker 1: and to see that the possibility of that being taken 861 00:53:55,680 --> 00:53:59,440 Speaker 1: away is heartbreaking for so many. 862 00:53:59,719 --> 00:54:03,799 Speaker 2: Families because as families you mentioned where they say there's 863 00:54:03,840 --> 00:54:08,040 Speaker 2: something we have for your loved one, you know, without 864 00:54:08,640 --> 00:54:13,719 Speaker 2: medical research, without these scientists, without funding, they're not going 865 00:54:13,800 --> 00:54:15,800 Speaker 2: to hear that, you know. 866 00:54:16,080 --> 00:54:20,120 Speaker 1: I doctor Bruce Miller from UCSF, you know, has said 867 00:54:20,160 --> 00:54:23,520 Speaker 1: that by the year twenty fifty, dementia cases are going 868 00:54:23,600 --> 00:54:27,440 Speaker 1: to triple. You know, that's just a lot of people, 869 00:54:28,360 --> 00:54:33,359 Speaker 1: and we really need to think about funding, continued funding. 870 00:54:33,120 --> 00:54:36,080 Speaker 2: And the societal impact of that, because it's not just 871 00:54:36,800 --> 00:54:41,040 Speaker 2: this terrible situation for an individual. It branches out to 872 00:54:41,160 --> 00:54:46,279 Speaker 2: their family, it branches out to productivity, you know, all 873 00:54:46,480 --> 00:54:50,040 Speaker 2: kinds of economic considerations when you think about this and 874 00:54:50,440 --> 00:54:55,040 Speaker 2: healthcare costs. So it is a huge, huge issue. 875 00:54:54,960 --> 00:54:57,759 Speaker 1: Especially when you think about Medicare and Medicaid and all 876 00:54:57,800 --> 00:55:00,680 Speaker 1: the cuts, and you know, it was already the services 877 00:55:00,760 --> 00:55:05,000 Speaker 1: were already lacking and complicated to try and go through 878 00:55:05,280 --> 00:55:08,160 Speaker 1: the insurance to be able to try and find support 879 00:55:08,280 --> 00:55:10,680 Speaker 1: that you need or services that you need when you're 880 00:55:10,760 --> 00:55:13,600 Speaker 1: caring for someone with dementia, Like what is that going 881 00:55:13,680 --> 00:55:16,640 Speaker 1: to look like? Now? You know? And I think like 882 00:55:16,840 --> 00:55:19,640 Speaker 1: that is you know again, I'm like in the midst 883 00:55:19,680 --> 00:55:22,320 Speaker 1: of our journey. I am learning as I go. I 884 00:55:22,400 --> 00:55:25,000 Speaker 1: am really trying to learn how to use my voice, 885 00:55:25,120 --> 00:55:28,799 Speaker 1: how to become an advocate. But you know, my eye 886 00:55:29,040 --> 00:55:30,839 Speaker 1: is on the prize of like how do I get 887 00:55:31,360 --> 00:55:35,000 Speaker 1: to DC and support all the other people who are 888 00:55:35,160 --> 00:55:39,320 Speaker 1: there trying to raise their hand of like where's the 889 00:55:39,400 --> 00:55:43,640 Speaker 1: support for caregivers? You know where is that and this 890 00:55:43,880 --> 00:55:48,880 Speaker 1: is really such an issue and I would love to 891 00:55:48,960 --> 00:55:51,480 Speaker 1: be a part of that conversation. 892 00:55:51,960 --> 00:55:54,560 Speaker 2: Well, I think you already are and will continue to be, 893 00:55:55,360 --> 00:55:59,000 Speaker 2: and I think many people look to you as a 894 00:55:59,080 --> 00:56:03,800 Speaker 2: real leader, Emma in this whole field. Although it pained me, 895 00:56:04,200 --> 00:56:07,360 Speaker 2: you know, I know you have gotten some criticism, and 896 00:56:07,960 --> 00:56:11,279 Speaker 2: I wondered if and people criticized because you made a 897 00:56:11,360 --> 00:56:15,080 Speaker 2: decision to move Bruce to a separate residence where he 898 00:56:15,200 --> 00:56:19,520 Speaker 2: could get round the clock care, and you know the 899 00:56:19,680 --> 00:56:23,000 Speaker 2: reaction has been I think must be very painful for 900 00:56:23,160 --> 00:56:25,839 Speaker 2: you in some ways or not. I mean it would 901 00:56:25,880 --> 00:56:30,239 Speaker 2: say things like Hemming admits to shifting Bruce to a 902 00:56:30,360 --> 00:56:36,520 Speaker 2: second residence and you know, welcome to American twenty twenty five, 903 00:56:36,680 --> 00:56:42,440 Speaker 2: where everyone judges everyone for everything. But it was painful 904 00:56:42,560 --> 00:56:46,200 Speaker 2: for me on behalf of you. Thank you to read 905 00:56:46,280 --> 00:56:52,640 Speaker 2: these things and to see people make judgments about your decisions. 906 00:56:52,800 --> 00:56:57,200 Speaker 2: And I'm wondering how you kind of took that in 907 00:56:58,440 --> 00:57:02,960 Speaker 2: and if it pained you or you were prepared for it, 908 00:57:03,280 --> 00:57:04,440 Speaker 2: how did you feel about that? 909 00:57:04,800 --> 00:57:07,279 Speaker 1: I mean, this is twenty twenty five. I knew by 910 00:57:07,880 --> 00:57:10,680 Speaker 1: talking about this and being open and just honest and 911 00:57:10,800 --> 00:57:13,120 Speaker 1: the truth of what is that it would of course 912 00:57:13,239 --> 00:57:17,680 Speaker 1: be met with criticism and judgment. I had prepped myself really, 913 00:57:18,000 --> 00:57:21,080 Speaker 1: oh yeah, prepped myself for knowing that, And it was 914 00:57:21,200 --> 00:57:23,280 Speaker 1: kind of interesting to see kind of like the rollout 915 00:57:23,400 --> 00:57:27,000 Speaker 1: of that, like a social experiment, almost, to be able 916 00:57:27,080 --> 00:57:31,720 Speaker 1: to see just how people are so quick to judge 917 00:57:31,920 --> 00:57:35,120 Speaker 1: a caregiver and the decisions that they are trying to 918 00:57:35,240 --> 00:57:38,600 Speaker 1: make that are hard. You know, these are hard decisions, 919 00:57:39,280 --> 00:57:44,520 Speaker 1: and you know, again, dementia plays out differently in each person, 920 00:57:45,440 --> 00:57:48,760 Speaker 1: and I think that as caregivers, we need to do 921 00:57:49,720 --> 00:57:56,680 Speaker 1: and make decisions that are the safest and best for 922 00:57:57,520 --> 00:58:01,200 Speaker 1: our person and our family. And this was the best decision, 923 00:58:01,760 --> 00:58:06,840 Speaker 1: hardest decision, but the right one for our family. 924 00:58:07,800 --> 00:58:10,520 Speaker 2: Did you feel like you had to justify your decision 925 00:58:10,800 --> 00:58:12,120 Speaker 2: after the criticism? 926 00:58:13,040 --> 00:58:15,480 Speaker 1: No? You know what was interesting because I wanted to 927 00:58:15,720 --> 00:58:17,520 Speaker 1: really be able to talk about it in the book, 928 00:58:17,560 --> 00:58:20,240 Speaker 1: which is something that I did. And what I realized 929 00:58:20,360 --> 00:58:23,040 Speaker 1: is I was writing that I had so much anxiety 930 00:58:23,280 --> 00:58:27,040 Speaker 1: around talking about it, but I also knew how important 931 00:58:27,080 --> 00:58:29,880 Speaker 1: it was to be able to control our narrative before 932 00:58:30,040 --> 00:58:32,960 Speaker 1: this rolled out and got ahead of us, and. 933 00:58:33,040 --> 00:58:36,680 Speaker 2: Also how important it was to be brutally honest, I imagine. 934 00:58:36,800 --> 00:58:39,560 Speaker 1: Well, also, like the reason why I also did it 935 00:58:39,800 --> 00:58:44,520 Speaker 1: was because I wanted someone else to feel validated and 936 00:58:44,680 --> 00:58:48,360 Speaker 1: seeing in their decision when it comes time for them 937 00:58:48,480 --> 00:58:50,560 Speaker 1: to have to make a hard decision to be to 938 00:58:50,680 --> 00:58:55,520 Speaker 1: place their loved one in a care facility. You know, granted, 939 00:58:55,560 --> 00:58:58,400 Speaker 1: you know this is our second home, this is different, 940 00:58:58,960 --> 00:59:03,720 Speaker 1: but still, you know, again people don't understand all the 941 00:59:03,880 --> 00:59:07,120 Speaker 1: needs that aren't met behind closed doors. You know, now 942 00:59:08,240 --> 00:59:10,720 Speaker 1: Bruce's needs are met one hundred percent of the time, 943 00:59:11,320 --> 00:59:14,400 Speaker 1: and our children are in a home now that supports 944 00:59:15,280 --> 00:59:18,040 Speaker 1: their needs. So you know, this is really a win 945 00:59:18,200 --> 00:59:20,920 Speaker 1: win scenario for us. I think that, like, I'm not 946 00:59:21,000 --> 00:59:22,840 Speaker 1: taking a vote on it. I don't need all the 947 00:59:23,280 --> 00:59:25,360 Speaker 1: public opinion about it. You know, if you don't have 948 00:59:25,600 --> 00:59:28,840 Speaker 1: the experience, you don't get to say, if you are 949 00:59:28,920 --> 00:59:31,320 Speaker 1: not in this day in and day out, you know, 950 00:59:31,400 --> 00:59:34,680 Speaker 1: you have to do the best decision, the right decision. 951 00:59:35,200 --> 00:59:37,479 Speaker 1: And you know, going back to the chapter of that book, 952 00:59:37,520 --> 00:59:41,000 Speaker 1: you know, I did feel like I was over explaining 953 00:59:41,120 --> 00:59:43,680 Speaker 1: and defending and like this is why and dah dah, 954 00:59:43,720 --> 00:59:47,120 Speaker 1: da da dah. And over the course of a couple 955 00:59:47,200 --> 00:59:49,640 Speaker 1: of months and going back to that chapter. I'm like, no, 956 00:59:50,400 --> 00:59:52,640 Speaker 1: what am I doing? You know, I know that this 957 00:59:52,920 --> 00:59:55,280 Speaker 1: was the right decision. I don't need to defend this. 958 00:59:55,520 --> 00:59:57,880 Speaker 1: People are going to have an opinion. They are going 959 00:59:57,960 --> 01:00:01,640 Speaker 1: to judge it either way. I'm going to get judged 960 01:00:01,640 --> 01:00:05,600 Speaker 1: no matter what. But caregivers get judged, and I think 961 01:00:05,680 --> 01:00:09,840 Speaker 1: that just unfortunately comes with the territory, and I think 962 01:00:09,920 --> 01:00:12,760 Speaker 1: that narrative really needs to be changed. I mean, it 963 01:00:12,880 --> 01:00:17,720 Speaker 1: was also interesting for me to see other caregivers judging me. 964 01:00:18,560 --> 01:00:20,760 Speaker 1: You know, I would have never done that to my person, 965 01:00:21,080 --> 01:00:23,400 Speaker 1: or you know this, you should do it like this 966 01:00:23,760 --> 01:00:28,360 Speaker 1: or do it like that. Oh, you know, I'm just 967 01:00:28,520 --> 01:00:30,840 Speaker 1: I'm doing We're all doing the best that we can 968 01:00:31,160 --> 01:00:35,960 Speaker 1: in an impossible situation. And I know and see that 969 01:00:36,080 --> 01:00:38,960 Speaker 1: this was just the right decision for us, and we 970 01:00:39,040 --> 01:00:43,400 Speaker 1: all just have to do what is right for our family. 971 01:00:44,240 --> 01:00:48,360 Speaker 2: I've always appreciated, I think I mentioned earlier that you've 972 01:00:48,520 --> 01:00:54,240 Speaker 2: always been so upfront and aware of the fact that 973 01:00:54,520 --> 01:00:58,120 Speaker 2: so many people in this country who find themselves in 974 01:00:58,240 --> 01:01:03,000 Speaker 2: this position simply don't have resources. Is there anything that 975 01:01:03,160 --> 01:01:06,640 Speaker 2: you hope will be done about that as a result 976 01:01:07,440 --> 01:01:12,000 Speaker 2: of being public about your experiences? Is there are there 977 01:01:12,120 --> 01:01:19,000 Speaker 2: policy changes? Are there ways that we can support these 978 01:01:19,320 --> 01:01:23,600 Speaker 2: sixty three million you said caregivers in the United States? 979 01:01:24,000 --> 01:01:26,760 Speaker 1: I mean, I think it's important that we're electing officials 980 01:01:26,920 --> 01:01:30,360 Speaker 1: that are thinking about caregivers and that they are at 981 01:01:30,400 --> 01:01:33,440 Speaker 1: the top of mind because at some point in our 982 01:01:33,520 --> 01:01:36,680 Speaker 1: lives we will need care or we will need to 983 01:01:36,760 --> 01:01:40,680 Speaker 1: care for someone else. So it's important that we are 984 01:01:40,920 --> 01:01:44,080 Speaker 1: looking at that. And I am sure again that there 985 01:01:44,160 --> 01:01:47,960 Speaker 1: are policies and things and stuff, and I am going 986 01:01:48,080 --> 01:01:53,160 Speaker 1: to continue to learn and grow and figure out how 987 01:01:53,960 --> 01:01:56,880 Speaker 1: how to use my voice so that caregivers can be 988 01:01:57,160 --> 01:02:00,800 Speaker 1: supported because they are not again, they are uns they 989 01:02:00,880 --> 01:02:04,000 Speaker 1: are unsupported. They are doing it on their own, and 990 01:02:04,080 --> 01:02:07,680 Speaker 1: it is not sustainable. I mean, you see those statistics. 991 01:02:08,080 --> 01:02:11,600 Speaker 1: It is not sustainable. So how are we caring for 992 01:02:11,720 --> 01:02:13,880 Speaker 1: the caregiver? I mean, there has to be a big 993 01:02:14,080 --> 01:02:18,640 Speaker 1: picture here to be able to help caregivers who don't 994 01:02:18,680 --> 01:02:22,680 Speaker 1: have the time, the energy, the resources, the access. And 995 01:02:23,200 --> 01:02:25,320 Speaker 1: I am just one voice of many. 996 01:02:26,960 --> 01:02:30,720 Speaker 2: Do you ever get pissed and just feel like, I 997 01:02:30,800 --> 01:02:36,120 Speaker 2: mean it's perfectly normal, like why me, why us? This sucks? 998 01:02:37,120 --> 01:02:40,640 Speaker 2: You know, I can't believe it. I'm pissed. 999 01:02:41,280 --> 01:02:44,240 Speaker 1: Yeah, I was early on, I think like why, yeah, 1000 01:02:44,320 --> 01:02:50,000 Speaker 1: why us? Why him? Why our daughters? Why me? And 1001 01:02:50,160 --> 01:02:52,440 Speaker 1: now I'm in this position of like, I can't believe 1002 01:02:52,480 --> 01:02:55,680 Speaker 1: that I am this person? Now, who is you know, 1003 01:02:56,160 --> 01:02:58,919 Speaker 1: just such an introvert like I you're shy? 1004 01:02:59,240 --> 01:03:01,680 Speaker 2: I am so shy. You don't seem as shy as 1005 01:03:01,760 --> 01:03:03,080 Speaker 2: you were when I first met you. 1006 01:03:03,320 --> 01:03:05,640 Speaker 1: No, I'm like getting my bearings with it. I'm realizing that, 1007 01:03:05,720 --> 01:03:08,400 Speaker 1: you know, like this conversation, it's bigger than me, it's 1008 01:03:08,440 --> 01:03:11,480 Speaker 1: bigger than my husband, and I need as Bruce would say, Emma, 1009 01:03:11,480 --> 01:03:13,000 Speaker 1: you got to get out of your own way. And 1010 01:03:13,040 --> 01:03:14,560 Speaker 1: I'm just trying to get out of my own way 1011 01:03:14,720 --> 01:03:16,560 Speaker 1: and just trying to do the best that I can 1012 01:03:16,680 --> 01:03:18,640 Speaker 1: with the brain that I've been given. You know, I'm 1013 01:03:18,640 --> 01:03:22,600 Speaker 1: a high school dropout. I can't believe it's me. I 1014 01:03:22,680 --> 01:03:25,440 Speaker 1: went off to like become a model, and you know, 1015 01:03:25,720 --> 01:03:28,880 Speaker 1: I just can't believe it's me. I can't believe it's me. 1016 01:03:29,000 --> 01:03:30,920 Speaker 1: I can't believe that I am the one that wrote 1017 01:03:31,520 --> 01:03:35,560 Speaker 1: a book that you know, really is such a simple 1018 01:03:35,760 --> 01:03:38,120 Speaker 1: It's not that it's it is simple. How is there 1019 01:03:38,240 --> 01:03:41,080 Speaker 1: this gap? You know? How is there this gap that 1020 01:03:41,240 --> 01:03:46,520 Speaker 1: has not really been fully you know, filled. You know, 1021 01:03:46,640 --> 01:03:50,080 Speaker 1: how are we walking out with no support? You know? 1022 01:03:50,200 --> 01:03:52,720 Speaker 1: And I just i can see these little tiny gaps 1023 01:03:52,760 --> 01:03:55,480 Speaker 1: and I'm just trying to just trying to figure it 1024 01:03:55,520 --> 01:03:56,520 Speaker 1: out in real time. 1025 01:03:56,760 --> 01:04:00,200 Speaker 2: I think it's incredibly selfless of you, because I think 1026 01:04:00,240 --> 01:04:04,600 Speaker 2: a lot of people would kind of hibernate and deal 1027 01:04:04,640 --> 01:04:09,640 Speaker 2: with it in an uber private way. But I think that, 1028 01:04:10,080 --> 01:04:12,320 Speaker 2: you know, I always think sometimes you find your purpose, 1029 01:04:12,400 --> 01:04:16,160 Speaker 2: and sometimes your purpose finds you and it's not necessarily 1030 01:04:16,520 --> 01:04:20,880 Speaker 2: what you wanted it to be, and yet you know, 1031 01:04:22,080 --> 01:04:25,240 Speaker 2: you find yourself stepping up and filling a need and 1032 01:04:25,400 --> 01:04:30,280 Speaker 2: fulfilling a role that you never anticipated, but you feel 1033 01:04:30,800 --> 01:04:34,680 Speaker 2: is more important than just you and your own situation. 1034 01:04:35,720 --> 01:04:39,440 Speaker 2: And it's it's hard to do, but it's really important, 1035 01:04:39,560 --> 01:04:45,320 Speaker 2: and ultimately I think it is it's really gratifying and 1036 01:04:45,520 --> 01:04:50,680 Speaker 2: fulfilling to feel that somehow, some way you're helping someone else. 1037 01:04:51,440 --> 01:04:54,600 Speaker 1: I mean, I do really feel like I've found my purpose. 1038 01:04:54,720 --> 01:04:57,280 Speaker 1: And I do think, yeah, sure I could have remained 1039 01:04:58,240 --> 01:05:00,480 Speaker 1: I could have remained private about it, but that was 1040 01:05:00,880 --> 01:05:04,960 Speaker 1: honestly again, like that wasn't helping us, It's not going 1041 01:05:05,040 --> 01:05:09,720 Speaker 1: to help someone else. So this being able to advocate, 1042 01:05:09,840 --> 01:05:13,280 Speaker 1: being able to just share and now be in rooms 1043 01:05:13,360 --> 01:05:18,920 Speaker 1: with people that again other caregivers. It's so meaningful and 1044 01:05:19,600 --> 01:05:23,160 Speaker 1: I am really it's in a way it is helping me, 1045 01:05:23,680 --> 01:05:27,880 Speaker 1: you know, it is helping me heal, and I am 1046 01:05:28,000 --> 01:05:32,480 Speaker 1: so grateful for that. I'm so grateful for these opportunities 1047 01:05:32,840 --> 01:05:35,400 Speaker 1: that I'm being given and to be able to grow 1048 01:05:35,600 --> 01:05:40,640 Speaker 1: from this experience. It's saving me. 1049 01:05:41,720 --> 01:05:45,720 Speaker 2: Well. I appreciate you so much. I appreciate you not 1050 01:05:45,880 --> 01:05:50,240 Speaker 2: only sharing your story, but through sharing it, moving science 1051 01:05:50,400 --> 01:05:56,400 Speaker 2: forward faster, through a greater awareness and being the public 1052 01:05:56,520 --> 01:06:01,680 Speaker 2: face of a disease that I think often kept in 1053 01:06:01,760 --> 01:06:09,160 Speaker 2: the shadows and surrounded by unnecessary shame and stigma and stigma. 1054 01:06:09,560 --> 01:06:14,160 Speaker 2: And I know that so many people appreciate you too 1055 01:06:14,720 --> 01:06:17,720 Speaker 2: and appreciate what you've done and the fact that you've 1056 01:06:17,800 --> 01:06:22,240 Speaker 2: written this book, The Unexpected Journey, Finding strength, hopeing yourself 1057 01:06:22,320 --> 01:06:25,280 Speaker 2: on the caregiving path. Am a great to see you again. 1058 01:06:25,360 --> 01:06:29,280 Speaker 2: Thank you for coming in. I really love talking to you, 1059 01:06:29,840 --> 01:06:33,360 Speaker 2: and I still believe what I found when I first 1060 01:06:33,440 --> 01:06:36,760 Speaker 2: met you, that you just emanate grace and intelligence and 1061 01:06:37,560 --> 01:06:39,160 Speaker 2: now a new kind of strength. 1062 01:06:40,200 --> 01:06:42,520 Speaker 1: So thank you, thank you for having me Katie Thank you. 1063 01:06:42,760 --> 01:06:43,480 Speaker 1: I appreciate it. 1064 01:06:46,880 --> 01:06:50,040 Speaker 2: Thanks for listening everyone. If you have a question for me, 1065 01:06:50,480 --> 01:06:52,960 Speaker 2: a subject you want us to cover, or you want 1066 01:06:53,000 --> 01:06:56,280 Speaker 2: to share your thoughts about how you navigate this crazy world, 1067 01:06:56,720 --> 01:07:00,320 Speaker 2: reach out send me a DM on Instagram. Love to 1068 01:07:00,360 --> 01:07:04,080 Speaker 2: hear from you. Next Question is a production of iHeartMedia 1069 01:07:04,280 --> 01:07:08,640 Speaker 2: and Katie Couric Media. The executive producers are Me, Katie Kuric, 1070 01:07:08,760 --> 01:07:13,160 Speaker 2: and Courtney Ltz. Our supervising producer is Ryan Martz, and 1071 01:07:13,280 --> 01:07:18,360 Speaker 2: our producers are Adriana Fazzio and Meredith Barnes. Julian Weller 1072 01:07:18,520 --> 01:07:23,080 Speaker 2: composed our theme music. For more information about today's episode, 1073 01:07:23,320 --> 01:07:25,640 Speaker 2: or to sign up for my newsletter, wake Up Call, 1074 01:07:26,160 --> 01:07:29,040 Speaker 2: go to the description in the podcast app, or visit 1075 01:07:29,160 --> 01:07:32,320 Speaker 2: us at Katiecuric dot com. You can also find me 1076 01:07:32,400 --> 01:07:36,120 Speaker 2: on Instagram and all my social media channels. For more 1077 01:07:36,200 --> 01:07:41,520 Speaker 2: podcasts from iHeartRadio, visit the iHeartRadio app, Apple Podcasts, or 1078 01:07:41,560 --> 01:07:43,640 Speaker 2: wherever you listen to your favorite shows.