WEBVTT - What author Amy Bloom learned from her husband's decision to end his life 0:00:04.040 --> 0:00:06.360 What do you do when life doesn't go according to plan? 0:00:07.160 --> 0:00:09.680 That moment you lose a job, or a loved one, 0:00:10.200 --> 0:00:14.040 or even a piece of yourself. I'm Brookshields and this 0:00:14.560 --> 0:00:18.720 is now What, a podcast about pivotal moments as told 0:00:18.720 --> 0:00:21.520 by people who lived them. Each week, I sit down 0:00:21.560 --> 0:00:23.800 with a guest to talk about the times they were 0:00:23.880 --> 0:00:26.880 knocked off course and what they did to move forward. 0:00:27.840 --> 0:00:32.960 Some stories are funny, others are gut wrenching, but all 0:00:33.240 --> 0:00:38.239 are unapologetically human and remind us that every success and 0:00:38.400 --> 0:00:42.840 every setback is accompanied by a choice, and that choice 0:00:42.920 --> 0:00:51.720 answers one question. Now, what you write a lot about love? 0:00:52.240 --> 0:00:55.640 What do you think in this era of your life? 0:00:56.080 --> 0:01:00.520 Being in love means? I think everybody is different, everybody 0:01:00.520 --> 0:01:03.400 has different goals. I think I'm lucky in that I 0:01:03.480 --> 0:01:06.680 feel like I can take care of myself. I don't 0:01:06.680 --> 0:01:09.360 need somebody to pay my bills. I mean, I could 0:01:09.440 --> 0:01:12.080 actually always use somebody to take out the garbage. One 0:01:12.080 --> 0:01:14.280 of my daughters said, you know, mommy, that's not a 0:01:14.360 --> 0:01:16.600 gender thing. I said, you are one hundred percent right. 0:01:16.640 --> 0:01:18.920 I don't care who takes out the garbage. As long 0:01:18.959 --> 0:01:21.880 as it's not me, that doesn't matter. To me what 0:01:21.920 --> 0:01:24.240 their pronouns are. As long as it's not Amy Bloom, 0:01:24.560 --> 0:01:28.080 anybody can take out the garbage. You want to feel 0:01:28.080 --> 0:01:32.280 like you have a real partner, and I think it's 0:01:32.319 --> 0:01:35.200 important not to be fooled by somebody who can occupy 0:01:35.240 --> 0:01:39.160 the space of partner without actually being present as a partner. 0:01:40.200 --> 0:01:46.120 You want to see and be seen. My guest today 0:01:46.200 --> 0:01:50.640 is New York Times bestselling author and licensed therapist Amy Bloom. 0:01:51.160 --> 0:01:54.560 Amy knows a thing or two about love. Her latest book, 0:01:54.920 --> 0:01:58.320 In Love, a Memoir of Love and Loss, chronicles her 0:01:58.400 --> 0:02:02.440 late husband's Alzheimer's diagnosis and their decision as a couple 0:02:03.000 --> 0:02:06.320 to forego the long goodbye and seek end of life 0:02:06.360 --> 0:02:11.520 treatment overseas. It's a gut wrenching story, one that left 0:02:11.560 --> 0:02:14.200 me wondering how I would react had I been in 0:02:14.280 --> 0:02:19.800 her situation. Amy's insight, her maturity, and her reverence for 0:02:19.919 --> 0:02:23.000 life is striking. I'm so grateful that she wrote this 0:02:23.040 --> 0:02:25.880 beautiful book and made the time to talk with me 0:02:26.080 --> 0:02:33.240 about it. So here is Amy Bloom. First of all, 0:02:33.639 --> 0:02:36.600 Amy Bloom, thank you so much for joining me on 0:02:36.639 --> 0:02:40.000 this podcast. I'm glad to be here. I'm coming off 0:02:40.200 --> 0:02:44.359 of your latest book, which is called In Love, a 0:02:44.400 --> 0:02:49.360 memoir of love and loss and for people who don't 0:02:49.440 --> 0:02:53.000 yet know it. It chronicles the discovery that your late 0:02:53.280 --> 0:02:58.400 husband was diagnosed with Alzheimer's and his decision and then 0:02:58.480 --> 0:03:03.880 your decision together to travel to Switzerland to enable him 0:03:03.919 --> 0:03:08.520 to have a physician assistant suicide. The book is about love. 0:03:08.720 --> 0:03:15.600 It's an unselfish view of probably doing the most difficult 0:03:15.639 --> 0:03:19.360 thing that I can imagine anybody having to be a 0:03:19.400 --> 0:03:22.400 part of. But before we talk about it, can you 0:03:22.440 --> 0:03:26.320 tell us and me a little bit about Brian? Oh? Sure, 0:03:26.960 --> 0:03:33.079 we met under kind of elderly rom com circumstances. We 0:03:33.080 --> 0:03:38.120 were what do you qualify elderly? Please, we're a world 0:03:39.080 --> 0:03:43.960 weren't so old, you know, I'm older now. But we 0:03:43.960 --> 0:03:48.480 were both Democrats in a small Connecticut Republican town and 0:03:48.600 --> 0:03:52.320 our paths crossed. We were both sort of active Democrats. 0:03:52.440 --> 0:03:55.040 We worked at the hot dog stand at the Durham 0:03:55.160 --> 0:03:58.920 Fair and we had been friends for quite a long 0:03:58.960 --> 0:04:03.280 time and fell in love. And you know, we're a 0:04:03.320 --> 0:04:06.080 little bit scandalous in our small town. But wrote it 0:04:06.080 --> 0:04:11.800 out and Brian, who had chosen not to have kids, 0:04:12.680 --> 0:04:16.719 really embraced my kids, and even more the grandchildren that 0:04:16.800 --> 0:04:19.160 came after that. As he said, he felt like he 0:04:19.160 --> 0:04:22.359 had robbed a bank. He'd gone right from being himself 0:04:22.400 --> 0:04:24.599 to being a grandfather and didn't have to have kids. 0:04:25.200 --> 0:04:27.880 He was a big dog and either you like that 0:04:28.000 --> 0:04:30.159 kind of thing or you don't. I mean, I certainly 0:04:30.200 --> 0:04:32.640 understand why people might not. But he took up a 0:04:32.720 --> 0:04:34.760 lot of space, took up a lot of space physically. 0:04:34.760 --> 0:04:39.200 He had a big laugh, big smile, and endless capacity 0:04:39.279 --> 0:04:43.520 to schmooz and small talk. You know. I used to say, 0:04:43.560 --> 0:04:47.200 you'd walk into a room with Brian and twenty minutes later, 0:04:47.320 --> 0:04:50.160 somebody is coming over and saying, you and Brian are 0:04:50.200 --> 0:04:53.440 coming to Thanksgiving, right, you know, And you know he 0:04:53.440 --> 0:04:56.800 would always be like, hey, you know, did you play football? 0:04:57.080 --> 0:04:58.720 You know, you look like you might have played football, 0:04:58.720 --> 0:05:01.480 to people who looked absolutely not at all like they 0:05:01.480 --> 0:05:04.520 had played football, But they were so flattered and he 0:05:04.600 --> 0:05:09.680 was so warm. He was just like a big warm guy. 0:05:09.720 --> 0:05:14.120 And you were married at the time, or I was 0:05:14.200 --> 0:05:16.520 living with a partner at the time. Yeah, we both did. 0:05:16.680 --> 0:05:21.680 We both did terrible things and left her partners and 0:05:22.320 --> 0:05:26.479 fell in love and we're very very happy now. That's 0:05:26.520 --> 0:05:29.520 a courageous thing for both of you to do, to 0:05:29.720 --> 0:05:35.440 have the wherewithal and courage, if you will, to say 0:05:35.560 --> 0:05:38.919 I want this, no longer want this. How did you 0:05:38.960 --> 0:05:42.400 approach telling the people in your lives that there was 0:05:42.440 --> 0:05:45.200 a big, big change. Oh, that was hard. I mean 0:05:45.240 --> 0:05:48.359 my children were grown people. Everybody was grown ups. I 0:05:48.360 --> 0:05:51.960 would have found that very hard. You can't make it 0:05:52.040 --> 0:05:58.240 into good news, and you can't protect yourself by pretending 0:05:58.279 --> 0:06:00.960 that you are protecting the other person. You have to 0:06:01.000 --> 0:06:05.080 be I think fairly straightforward about it and understand that 0:06:05.839 --> 0:06:08.560 what is good for you is not necessarily good for 0:06:08.600 --> 0:06:11.800 somebody else. And even if you have persuaded yourself that 0:06:11.839 --> 0:06:13.960 it might be better in the long run for everybody, 0:06:14.000 --> 0:06:15.840 in some sense, I always feel like that's none of 0:06:15.880 --> 0:06:19.159 your business. Nobody asked you to plot out the rest 0:06:19.160 --> 0:06:21.880 of their lives for them, Thank you very much. So. 0:06:21.920 --> 0:06:26.440 I was friends with Grace Paley, a wonderful writer, and 0:06:27.680 --> 0:06:30.080 I have been talking to her about my relationship that 0:06:30.200 --> 0:06:34.080 was not going particularly well. And she picked up her hand, 0:06:34.600 --> 0:06:37.920 she tapped on her watch, and she said, TikTok, darling, 0:06:38.560 --> 0:06:45.560 you think between fifty and eighty it's minutes, it's seconds. Oh, 0:06:45.600 --> 0:06:48.560 but you know I think that that is it's a 0:06:48.640 --> 0:06:52.560 through line, and first of all, as a mom, to 0:06:53.640 --> 0:06:59.279 be an example to tell your children, showing them that 0:07:00.240 --> 0:07:04.520 it is important to choose what you need and what 0:07:04.600 --> 0:07:08.880 you want, you know, with empathy obviously and understanding that 0:07:08.960 --> 0:07:12.520 it may somehow be hurtful. But the interesting thing about that, 0:07:12.600 --> 0:07:14.600 and that I think is a through line too in 0:07:14.640 --> 0:07:19.000 your book, is that very often in these situations and 0:07:19.760 --> 0:07:23.320 with Brian's health, when you tell people in your life, 0:07:23.720 --> 0:07:28.480 inevitably their response is not about you. It's really about them. 0:07:28.600 --> 0:07:32.400 Oh one hundred. To be able to say this is 0:07:32.440 --> 0:07:34.679 going to be inconvenient or may be hurtful or sad 0:07:34.720 --> 0:07:37.240 for you, but I need to do this for myself, 0:07:37.280 --> 0:07:40.040 I think is a great lesson as a parent. And 0:07:40.080 --> 0:07:42.160 it's also a lesson to say, you know, if you're 0:07:42.240 --> 0:07:47.080 unhappy or if something's not working for you, the time 0:07:47.200 --> 0:07:49.360 is now for you to take care of yourself, because 0:07:49.400 --> 0:07:52.720 if you don't know, one really will. I think that's true, 0:07:52.720 --> 0:07:55.600 and I think it's always hard. I think it's hard 0:07:55.640 --> 0:07:58.840 to take responsibility for your own life. I think especially 0:07:58.880 --> 0:08:02.480 women are so good at responsibility for everybody else's lives 0:08:02.920 --> 0:08:06.440 and for being supportive of everybody else's choices that I 0:08:06.800 --> 0:08:10.200 think that sometimes we run out of steam. Yeah, you know, 0:08:10.280 --> 0:08:11.880 when we finally get to the bottom of the list, 0:08:11.960 --> 0:08:16.720 it's like, oh my god, how many more useful, responsible, intelligent, 0:08:16.920 --> 0:08:20.760 thoughtful decisions do I have to make today? And you 0:08:20.880 --> 0:08:22.600 kind of run that you're at the bottom of the list. 0:08:23.360 --> 0:08:27.080 And the irony, though, is in when did you notice 0:08:27.120 --> 0:08:33.000 that Brian was not himself or not well? I would 0:08:33.080 --> 0:08:38.880 say probably three years before the diagnosis. Just he seemed different. 0:08:38.920 --> 0:08:42.640 And I will say and probably anybody who has any 0:08:42.720 --> 0:08:46.920 relationship with a middle aged man of any kind probably 0:08:46.960 --> 0:08:51.440 recognizes that there's a certain amount of self absorption. No 0:08:51.520 --> 0:08:55.240 and no, I'm going out on I'm going out on 0:08:55.320 --> 0:09:00.000 a lampboy, You're really going out I know, I really am. 0:08:59.400 --> 0:09:03.640 I expect to switch board to light up momentarily with 0:09:03.800 --> 0:09:09.320 people screaming no, no. So it was a little hard 0:09:09.360 --> 0:09:12.600 to tell, but it was just not him. He became 0:09:12.679 --> 0:09:16.960 more withdrawn. The daughter of a close friend of ours 0:09:17.040 --> 0:09:19.600 and particularly of his, who had known him since she 0:09:19.760 --> 0:09:24.480 was a baby, went to her dad and said, his uncle, Brian, okay, 0:09:24.600 --> 0:09:28.560 And that was a very early canary in the coal mine. 0:09:28.600 --> 0:09:32.120 But part of my experience with that is when you 0:09:32.200 --> 0:09:37.160 love the person who has Alzheimer's, the temptation to not 0:09:37.400 --> 0:09:41.160 see and to explain away and to hope for the 0:09:41.240 --> 0:09:44.160 best and to take the position of oh, good days 0:09:44.160 --> 0:09:48.200 and bad days is just irresistible. Of course, how long 0:09:48.240 --> 0:09:50.560 had you been married by that point? Oh, we had 0:09:50.559 --> 0:09:54.920 been married, oh, about twelve years. And I could just 0:09:55.440 --> 0:09:58.920 he had always been a fairly big reader. He wasn't 0:09:59.040 --> 0:10:02.160 really eating, and he was part of a book club, 0:10:02.679 --> 0:10:04.920 was part of a book club, and he had always 0:10:04.960 --> 0:10:08.760 really enjoyed it. And then it seemed to me overnight, 0:10:08.800 --> 0:10:12.440 but of course it wasn't. He was so irritated by 0:10:12.480 --> 0:10:16.679 the emails or by the texts, or next week is 0:10:16.720 --> 0:10:20.560 at Bob's house. Any little change in the routine was 0:10:20.600 --> 0:10:23.360 sort of disturbing to him. And it's not like we 0:10:23.360 --> 0:10:25.360 were in our eighties, you know. He was in his 0:10:25.440 --> 0:10:29.480 early sixties, and he was unable to do his job, 0:10:29.840 --> 0:10:33.920 which was very painful for him, and probably the big 0:10:34.760 --> 0:10:38.400 the biggest red flag, because it was not a design 0:10:38.520 --> 0:10:40.560 problem as far as I could tell from when he 0:10:40.640 --> 0:10:43.200 was talking about it. It was things like he could 0:10:43.280 --> 0:10:46.120 not get the printer to work in the office, and 0:10:46.160 --> 0:10:49.400 he would keep going to the administrative assistant repeatedly and 0:10:49.520 --> 0:10:52.280 asking for her help. And then it really hurt his 0:10:52.320 --> 0:10:55.880 feelings because she was annoyed. You know. The tenth time, 0:10:56.440 --> 0:11:01.400 my mother was diagnosed with dementia, but not Alzheimer's per se, 0:11:01.440 --> 0:11:05.720 but dementia. And she, you know, she didn't cook a 0:11:05.760 --> 0:11:08.360 lot at all, but she did set a table, always 0:11:08.400 --> 0:11:11.320 beautifully set a table. And so I asked her one 0:11:11.400 --> 0:11:17.160 day to set the table, and two hours later, half 0:11:17.160 --> 0:11:20.800 of one setting was put out in another. And then 0:11:21.559 --> 0:11:25.600 I said, hey, Mom, I just got these new cups. 0:11:26.240 --> 0:11:29.559 Would you take the stickers off the bottom, and that 0:11:30.240 --> 0:11:33.920 she could sit down for another two hours and just 0:11:34.280 --> 0:11:38.760 peeled the stickers off, and I thought, oh, something, you know, 0:11:38.840 --> 0:11:41.400 And then she she tried to heat up soup on 0:11:41.440 --> 0:11:46.959 the open flame in a ceramic bowl and I said, yeah, hey, ma, 0:11:47.200 --> 0:11:51.240 that's probably pretty dangerous to do that. You probably should 0:11:51.320 --> 0:11:54.480 put it in a pot first, and she said, ah, 0:11:54.640 --> 0:12:00.520 fuck it, forget the middleman. So there was humor, but 0:12:00.640 --> 0:12:03.960 that was where she dealt. She dealt with things. So 0:12:04.840 --> 0:12:10.440 the diagnosis comes and it's devastating. What was the most 0:12:10.480 --> 0:12:14.880 devastating part about getting that diagnosis for him? I think 0:12:14.960 --> 0:12:18.480 sitting there in the office, and you know, and listeners 0:12:18.520 --> 0:12:21.720 who have gone through this themselves with family members, you know, 0:12:21.800 --> 0:12:25.559 they don't say, oh, it's Alzheimer's. They say it's probably Alzheimer's. 0:12:25.559 --> 0:12:27.520 There would be no way of knowing until we did 0:12:27.559 --> 0:12:31.560 an autopsy. But you know, signs point to yes, and 0:12:32.720 --> 0:12:35.440 you know, there's really no preparing for it, because the 0:12:35.480 --> 0:12:38.440 fact is, if you have dementia, preparing for it doesn't 0:12:38.440 --> 0:12:42.800 mean a lot. It was a terrible shock, but this 0:12:42.840 --> 0:12:45.280 is what I had been thinking for the last year. 0:12:46.240 --> 0:12:50.240 I think the worst thing for me was having to 0:12:50.280 --> 0:12:54.640 sit next to Brian and watch him hear it, because 0:12:54.679 --> 0:13:04.280 I know he did not expect it. How long after 0:13:04.320 --> 0:13:11.320 he gets the diagnosis does he start discussing assisted suicide 0:13:11.480 --> 0:13:17.000 and the desire to not continue? Less than a week? Really, 0:13:17.720 --> 0:13:20.080 I think maybe what I didn't, what I didn't convey 0:13:20.080 --> 0:13:22.040 about Brian when I said he was a big dog, 0:13:22.640 --> 0:13:24.920 is that the line we used in our family is 0:13:24.920 --> 0:13:28.120 that he was a hard man to stop and he 0:13:28.440 --> 0:13:32.840 knew his mind. You know, he had been a very 0:13:32.920 --> 0:13:36.760 good defensive. I don't know what the hell the position 0:13:36.840 --> 0:13:39.920 is called a something, a tight end, a defensive something 0:13:40.040 --> 0:13:47.440 something I don't know what everybody like that, and um, 0:13:47.520 --> 0:13:50.000 he was a hard man to stop. I used to 0:13:50.040 --> 0:13:53.040 say his three principles were take yes for an answer, 0:13:53.920 --> 0:13:57.640 better to ask permission than forgiveness, because he was raised Catholic, 0:13:58.400 --> 0:14:00.800 and if there's going to be a fight, throw the 0:14:00.840 --> 0:14:05.520 first punch. And I think that spoke entirely to his 0:14:05.640 --> 0:14:08.679 response about the diagnosis, which is there's going to be 0:14:08.760 --> 0:14:12.360 a fight, I want to choose, I want to decide 0:14:12.400 --> 0:14:15.400 the terms. I want to be in charge of my life. 0:14:15.400 --> 0:14:18.240 And as he said to me, he said, you know me, 0:14:19.400 --> 0:14:21.440 I would rather die on my feet than live on 0:14:21.520 --> 0:14:25.320 my knees. And that is really what he was like. Well, 0:14:25.360 --> 0:14:27.920 and then if you say he knows his mind and 0:14:27.960 --> 0:14:31.280 then gets the very diagnosis that is robbing him of 0:14:31.440 --> 0:14:36.800 his mind, right, you couldn't give him a worse And 0:14:36.840 --> 0:14:41.480 that's also why the clock was ticking. And I didn't, 0:14:41.520 --> 0:14:44.680 I mean, we didn't know that at first, but once 0:14:45.000 --> 0:14:48.440 we did the research and I discovered the presence of Dignitas, 0:14:48.480 --> 0:14:50.880 which now, by the way, has a second organization very 0:14:50.960 --> 0:14:54.400 much like it. It's a nonprofit. And if you can 0:14:54.440 --> 0:14:57.560 demonstrate that you have discernment and judgment and you wish 0:14:57.600 --> 0:15:01.120 to end your life. They will be supportive of that. 0:15:01.160 --> 0:15:03.520 They will ask you one hundred and fifty times if 0:15:03.560 --> 0:15:05.360 you are sure you want to go through with it, 0:15:06.560 --> 0:15:09.200 and they are very supportive of people changing their minds. 0:15:09.920 --> 0:15:12.880 But they are available for that. But you have to 0:15:12.880 --> 0:15:18.320 have judgment and discernment. And so the fantasy which all 0:15:18.360 --> 0:15:22.760 of us, I think have in that situation is five six, 0:15:22.960 --> 0:15:26.040 seven years down the road, when things are really bad, 0:15:26.520 --> 0:15:29.760 we can go to dignitas. But that's not how it's 0:15:29.800 --> 0:15:32.560 set up. You have to have judgment, you have to 0:15:32.600 --> 0:15:35.000 have cognitive discernment, and you have to be able to 0:15:35.040 --> 0:15:39.080 demonstrate it. And so as Brian said to me, oh, 0:15:39.160 --> 0:15:41.840 I get it. If you don't go before you want 0:15:41.880 --> 0:15:44.320 to go, you don't get to go at all. How 0:15:44.320 --> 0:15:46.960 do you ward off the just a little bit more, 0:15:47.360 --> 0:15:49.520 just a little more time? How do you do that? 0:15:49.560 --> 0:15:53.600 How do you cross over to be completely in support 0:15:53.760 --> 0:15:56.960 of his decision? I mean I did at the beginning 0:15:57.000 --> 0:15:59.680 say to Brian, you don't have to do this. I 0:15:59.760 --> 0:16:02.920 can take care of you. We can do this, I 0:16:03.080 --> 0:16:06.240 promise you, and he said, you're not hearing me. He said, 0:16:06.240 --> 0:16:08.360 this is my life, and this is going to be 0:16:08.440 --> 0:16:12.280 my death. That's got to be do you recognize let 0:16:12.320 --> 0:16:15.640 me let me put it this way. Are there characteristics 0:16:15.680 --> 0:16:19.960 in your personality at that time that surprised you. I 0:16:20.040 --> 0:16:22.280 don't think so. I think for me it was not 0:16:22.840 --> 0:16:25.040 you know, the way the mother rushes out and lifts 0:16:25.120 --> 0:16:27.880 up the car to save the baby. It wasn't really 0:16:28.080 --> 0:16:31.480 like that. I mean, I have done hard things in 0:16:31.560 --> 0:16:35.600 my life before, nothing like this. Something we used to 0:16:35.600 --> 0:16:40.160 say two and about each other in our marriage. Brian 0:16:40.200 --> 0:16:43.080 would say, yeah, Amy, lets me be me. My policy 0:16:43.200 --> 0:16:46.520 is let Amy be Amy. And maybe that's the advantage 0:16:46.560 --> 0:16:51.160 of getting together later in life. There can't be that 0:16:51.200 --> 0:16:54.040 many fantasies about how people are going to change in 0:16:54.080 --> 0:16:56.160 the last thirty years of their life. I hope not 0:16:56.360 --> 0:17:01.240 for other people's say, but you know, we we absolutely 0:17:02.160 --> 0:17:06.919 took each other on as is, you know. And I 0:17:07.040 --> 0:17:10.720 also admired him for his decision and also issues that 0:17:10.760 --> 0:17:12.520 he had thought about. It wasn't that he had never 0:17:12.560 --> 0:17:15.160 thought about right to life, right to death, because he had. 0:17:15.200 --> 0:17:17.239 It was something that mattered to him. He had been 0:17:17.280 --> 0:17:21.600 a volunteer at Planned Parenthood, walking women from the parking 0:17:21.600 --> 0:17:24.639 lot to the clinic since he was nineteen years old. 0:17:25.600 --> 0:17:28.760 He felt that people should have choices, and he felt 0:17:28.800 --> 0:17:31.480 strongly that he, Brian should have a choice. And I 0:17:32.640 --> 0:17:36.720 think I supported it because it was very much what 0:17:36.760 --> 0:17:39.720 he wanted and he was very clear about that, but 0:17:39.840 --> 0:17:43.520 also because probably if I had been in his position, 0:17:43.560 --> 0:17:46.240 I would have felt the same way. Was he angry 0:17:46.280 --> 0:17:49.480 that in this country and in his own country that 0:17:50.280 --> 0:17:53.720 it wasn't allowed? And that was he upset with that? 0:17:54.440 --> 0:17:56.679 He was. I mean, we didn't dwell on it, but 0:17:56.800 --> 0:17:59.199 you know, I did the research because you know, he 0:17:59.240 --> 0:18:02.560 had been like we drive to Vermont. I was like, yes, 0:18:02.640 --> 0:18:04.840 we can drive to Vermont, but that will be the 0:18:04.960 --> 0:18:08.800 end of this process. Because the only way you will 0:18:08.840 --> 0:18:13.159 be considered for physician assisted end of life process in 0:18:13.280 --> 0:18:17.199 Vermont or any of the other states in America is 0:18:17.200 --> 0:18:21.080 if you have two doctors declare that you have six 0:18:21.119 --> 0:18:25.240 months to live in a terminal illness. Well, essentially that 0:18:25.280 --> 0:18:30.080 means no one with dementia of any kind is eligible 0:18:30.240 --> 0:18:34.919 for right to die in America. Do you think that 0:18:35.080 --> 0:18:39.840 you were able to process your own grief for what 0:18:39.920 --> 0:18:44.800 was happening while Brian was alive, or did that happen 0:18:45.440 --> 0:18:48.919 way after? Well, it turns out you can get a 0:18:48.960 --> 0:18:51.800 head start on grief and just keep going. That was 0:18:51.880 --> 0:18:56.600 my discovery that you know, explain that well. I would 0:18:56.600 --> 0:18:59.480 say I cried every I think it's safe to say 0:18:59.520 --> 0:19:04.800 I cried every day after the diagnosis, every single day, 0:19:05.040 --> 0:19:07.840 sometimes for a couple of minutes, sometimes for half an hour, 0:19:08.359 --> 0:19:11.680 sometimes while I was grocery shopping, and I barely even 0:19:11.720 --> 0:19:14.720 noticed that I was crying. And I had been doing 0:19:14.800 --> 0:19:18.680 some grieving even before the diagnosis, because I missed my husband, 0:19:19.280 --> 0:19:22.600 and since he wasn't like a shy, retiring person before, 0:19:23.240 --> 0:19:29.560 that absence had real texture it was, it had real chilliness, 0:19:29.600 --> 0:19:32.600 it had real depth, and I just missed him, and 0:19:32.680 --> 0:19:35.720 that would make me cry as well. Did you ever 0:19:35.840 --> 0:19:39.720 have anger about the injustice of it? I don't think 0:19:39.880 --> 0:19:42.840 I'm a I'm a y me kind of person when 0:19:42.880 --> 0:19:46.760 it comes to bad news. I think I'm more like, 0:19:47.200 --> 0:19:51.080 oh uh huh, all right, now, what has to happen now? 0:19:51.720 --> 0:19:56.080 I think we were both angry at the circumstance. And 0:19:56.720 --> 0:20:01.200 there were a couple of times long before the diagnosis, 0:20:01.240 --> 0:20:05.120 like a couple of years, where he just was being 0:20:05.200 --> 0:20:10.679 so difficult and distant and demanding and also puzzling, like 0:20:10.840 --> 0:20:15.560 he would express a very strong wish for something to happen, 0:20:15.680 --> 0:20:17.239 and then by the time he got to the end 0:20:17.280 --> 0:20:19.080 of the request, I was like, honey, I'm so sorry. 0:20:19.119 --> 0:20:21.479 I don't I don't understand what it is you're asking for. 0:20:21.840 --> 0:20:24.800 And then he would be furious, which I understand because 0:20:24.800 --> 0:20:27.440 it was frustrating and frightening for him, and that would 0:20:27.480 --> 0:20:29.200 certainly lead to sort of you know, and then I'd 0:20:29.200 --> 0:20:32.040 be like, why are you mad at me? But mostly 0:20:32.840 --> 0:20:35.280 I thought it was a terrible thing and that my 0:20:35.359 --> 0:20:44.920 job was to help him through it. So in addition 0:20:44.960 --> 0:20:49.480 to being an author, you're also a psychotherapist and you 0:20:49.560 --> 0:20:53.320 were a clinical social worker. Oh yeah, I keep I 0:20:53.400 --> 0:20:57.080 keep my license up. Oh good, Okay, well, I know 0:20:59.080 --> 0:21:02.560 what lesson do you think from that profession helped you 0:21:03.200 --> 0:21:07.760 to just deal and accept the reality and process it. Well, 0:21:08.160 --> 0:21:11.120 I'm sure some of the more lessons from having been 0:21:11.400 --> 0:21:14.480 a therapist. I mean, I think probably it was useful, 0:21:15.040 --> 0:21:17.560 especially being trained as a clinical social worker, which I 0:21:17.560 --> 0:21:20.639 think is very much being engaged with sort of the 0:21:20.640 --> 0:21:23.560 facts and realities of life. And so I'm a good observer. 0:21:24.320 --> 0:21:28.520 I could observe the changes, and I think probably because 0:21:28.520 --> 0:21:31.920 of my training, I was prepared not to ignore them. 0:21:31.960 --> 0:21:33.800 I mean I did my best. I had a lot 0:21:33.840 --> 0:21:37.560 of moments where I would sort of fantasize that maybe 0:21:37.560 --> 0:21:41.879 this was really this, it wasn't dementia. But after a 0:21:41.880 --> 0:21:43.800 couple of hours I would usually come back and go, 0:21:44.359 --> 0:21:48.040 something is really wrong and we need to get a diagnosis. 0:21:48.400 --> 0:21:51.560 And as you're making this decision and you're making the 0:21:51.600 --> 0:21:56.239 plans together and you're processing it, are there people in 0:21:56.280 --> 0:22:00.880 your families that you protect from the knowledge? Are there 0:22:01.000 --> 0:22:06.119 those you tell? Well? I think you know, as it 0:22:06.200 --> 0:22:08.760 is for most people with their families. You know, it 0:22:08.800 --> 0:22:11.679 depends on who you are closer to and also what 0:22:11.760 --> 0:22:14.680 the circumstances are. I mean, anybody who's gone through grief, 0:22:14.760 --> 0:22:17.959 just like you with your mom. You know that the 0:22:18.000 --> 0:22:21.000 person that you've always been very warm and friendly with, 0:22:21.280 --> 0:22:24.719 who apparently cannot even bring themselves to send you a 0:22:24.720 --> 0:22:29.720 condolence text is on one side of the continuum, and 0:22:29.960 --> 0:22:32.080 the lady down the street to whom you have barely 0:22:32.119 --> 0:22:36.800 ever spoken, who brings you a casserole every four days 0:22:37.160 --> 0:22:39.840 for three weeks, is at the other end of the spectrum. 0:22:39.840 --> 0:22:42.399 And you never know, you never know how people are 0:22:42.440 --> 0:22:45.720 going to respond to grief and loss, and who is 0:22:45.760 --> 0:22:48.840 going to just suddenly level up and who's going to 0:22:48.920 --> 0:22:52.080 be a tremendous disappointment. And one of the things I 0:22:52.160 --> 0:22:54.639 decided at some point was that I was not going 0:22:54.680 --> 0:22:58.640 to hold a grudge. I felt moments of panic as 0:22:58.680 --> 0:23:04.040 I was reading the book. And what shucks the heck 0:23:04.080 --> 0:23:10.160 out of me is that the actual process, it just happens. Yeah, 0:23:10.720 --> 0:23:13.560 all that love, all that commitment, all that intimacy, all 0:23:14.000 --> 0:23:17.640 the planning, that everything, and like, I don't know how 0:23:17.640 --> 0:23:21.119 long it's over, and then you just kind of have 0:23:21.200 --> 0:23:25.000 to get up and leave stuff and go to the airport. 0:23:25.280 --> 0:23:29.600 It's so unremarkable. Yes, and it's the most remarkable thing 0:23:30.600 --> 0:23:34.720 that I can imagine anybody going through. Were you numb, no, 0:23:35.400 --> 0:23:39.200 did you panic? No? I just I would have panicked 0:23:39.240 --> 0:23:41.320 at that moment, like wait, wait, wait, come back, come back, 0:23:41.320 --> 0:23:44.760 come back. I'm sorry. We didn't mean it like that, regret. 0:23:45.280 --> 0:23:48.360 I think I think if I had done something like that, 0:23:48.400 --> 0:23:51.199 he would have been so distressed. I mean, he was 0:23:51.960 --> 0:23:56.600 so clear, and he was talking about football, talk about football, 0:23:56.600 --> 0:24:00.240 and then finally he stopped. Then we held hands and 0:24:00.400 --> 0:24:02.399 we you know, we told each other we loved each 0:24:02.440 --> 0:24:06.879 other a million times, and we held hands and literally 0:24:07.040 --> 0:24:10.760 it was that phrase which I had never liked, you know, 0:24:10.880 --> 0:24:13.600 to say that somebody had passed or somebody had passed away, 0:24:13.600 --> 0:24:15.560 And I always thought, oh, what is that for. Why 0:24:15.600 --> 0:24:18.000 not just say that they are dead? No, he passed. 0:24:18.920 --> 0:24:23.399 I mean you could feel the transition and then he 0:24:23.440 --> 0:24:27.359 didn't have to struggle anymore. It was quite beautiful. And 0:24:27.440 --> 0:24:31.399 I was so happy that you said multiple times how 0:24:31.440 --> 0:24:35.040 much you loved each other, and and then to write 0:24:35.040 --> 0:24:39.840 this book. You are giving many people a gift. Again. 0:24:40.000 --> 0:24:43.040 I wish you didn't have I wish you didn't have 0:24:43.320 --> 0:24:47.240 to have a reason to write this book. But writing 0:24:47.280 --> 0:24:52.680 the book give you any relief or or help or 0:24:53.560 --> 0:24:59.239 solace or well, I'm a writer, and so you know. 0:24:59.320 --> 0:25:01.200 I imagine there's a piece of it that would be 0:25:01.240 --> 0:25:04.080 like somebody else who really likes to keep a clean house, 0:25:04.200 --> 0:25:08.080 or somebody else who loves to do elaborate cooking. I mean, 0:25:08.080 --> 0:25:12.439 you take comfort in the skills that you have in 0:25:12.480 --> 0:25:16.920 the face of all this unknown and treacherous territory. I 0:25:16.960 --> 0:25:21.040 think the bigger thing that probably was helpful to me 0:25:21.720 --> 0:25:26.560 is that COVID fell upon us less than a month 0:25:26.600 --> 0:25:30.240