WEBVTT NOTE This file was generated by Descript 00:00:07.293 --> 00:00:09.843 Candace Dellacona: Welcome to The Sandwich Generation Survival Guide. 00:00:09.843 --> 00:00:15.483 I am your host, Candace Dellacona, and I have a special treat for 00:00:15.483 --> 00:00:17.163 all of our listeners today. 00:00:17.673 --> 00:00:21.963 I'm going to introduce him and probably embarrass him because 00:00:21.963 --> 00:00:23.913 his background is so impressive. 00:00:24.253 --> 00:00:27.603 But please allow me to introduce all of you to Dr. 00:00:27.603 --> 00:00:28.513 Jonathan Knaul. 00:00:29.428 --> 00:00:35.428 Not only does Jonathan have his PhD from the Royal Military College of Canada. 00:00:35.578 --> 00:00:40.618 He is a graduate of the French Military of Defense Test Pilot School. 00:00:41.038 --> 00:00:45.958 He served in the Royal Canadian Air Force as a pilot commander for more than 30 00:00:45.958 --> 00:00:50.553 years, and he flew tactical helicopter missions in Kosovo and Afghanistan, 00:00:51.213 --> 00:00:53.728 for the NATO joint task force. 00:00:53.818 --> 00:00:56.553 Jonathan's currently retired, but he's not stopped flying. 00:00:57.093 --> 00:01:03.183 He's based here in California in the US and he continues to train pilots at the 00:01:03.183 --> 00:01:05.373 national test pilot school in the Mojave. 00:01:06.303 --> 00:01:10.773 If that's not enough, Jonathan is an author of a memoir and a guide for 00:01:10.773 --> 00:01:17.958 caregivers called "Final Approach, a Test Pilot Story for Caring for Loved Ones." 00:01:18.558 --> 00:01:22.848 So, Jonathan, that is the longest intro I've ever had the 00:01:22.848 --> 00:01:24.318 pleasure of introducing a guest. 00:01:24.318 --> 00:01:24.978 Welcome. 00:01:25.863 --> 00:01:26.403 Jonathan Knaul: Thank you. 00:01:27.048 --> 00:01:28.938 Candace Dellacona: We're so happy to have you here. 00:01:29.598 --> 00:01:31.158 Really, it's just such a treat. 00:01:31.188 --> 00:01:35.918 And I have to say I never thought that I'd have a wartime test pilot 00:01:35.918 --> 00:01:40.478 providing advice on surviving the sandwich generation, but here we are. 00:01:41.883 --> 00:01:44.853 Jonathan Knaul: It's really exciting to be here, Candace, and we had a 00:01:44.853 --> 00:01:48.623 great discussion yesterday and thank you for this wonderful introduction. 00:01:48.673 --> 00:01:50.803 It's very flattering and thank you very much. 00:01:50.803 --> 00:01:53.913 And I wish I was truly retired, but I'm certainly not. 00:01:54.823 --> 00:01:57.973 My job keeps me very, very busy as we talked about. 00:01:58.023 --> 00:01:59.973 Anyways, I'll just say I'm very happy to be here. 00:02:00.033 --> 00:02:03.983 It's a real honor and a real pleasure and, tell the listeners thank you 00:02:03.983 --> 00:02:07.183 very much for tuning in and giving me this opportunity to speak with you. 00:02:07.493 --> 00:02:10.343 Candace Dellacona: Yeah, so let's just jump right into it. 00:02:10.343 --> 00:02:15.043 When you think of a person who you know has all this knowledge to 00:02:15.043 --> 00:02:19.123 impart in this particular space, I don't think many of us would presume 00:02:19.123 --> 00:02:21.253 it would be a pilot to provide it. 00:02:21.253 --> 00:02:25.818 Obviously my first question is what led you to write your book? 00:02:26.765 --> 00:02:28.165 Jonathan Knaul: It definitely came from the heart. 00:02:28.265 --> 00:02:29.765 I, it was a few things. 00:02:30.710 --> 00:02:35.460 Probably first and foremost, I felt a duty to give back to the community 00:02:35.460 --> 00:02:40.500 about what I learned from caregiving because it's so hard and which pairs 00:02:40.500 --> 00:02:44.390 with just my personality, I suppose, which is one of the reasons why I 00:02:44.390 --> 00:02:46.480 joined the Canadian forces was to serve. 00:02:46.800 --> 00:02:50.960 So I, I felt I had a duty of care literally to transmit this message. 00:02:51.290 --> 00:02:57.560 And at the same time, I so much wanted to, record, chronicle, my parents' lives. 00:02:57.575 --> 00:03:00.185 It's a love letter to them in many ways. 00:03:00.575 --> 00:03:04.325 And, I wanted to tell their stories, their extraordinary live stories. 00:03:04.325 --> 00:03:08.305 And I wanted to wrap in a bit of my story too, of my career, which has 00:03:08.305 --> 00:03:10.165 been very unique as you highlighted. 00:03:10.215 --> 00:03:11.995 And it's a real honor to do what I do. 00:03:12.045 --> 00:03:13.455 And I'm lucky to be able to do it. 00:03:13.455 --> 00:03:15.085 There's a lot of luck that goes in there. 00:03:15.475 --> 00:03:22.219 I wanted to, I saw a platform to wrap all that together and I really saw a way to 00:03:22.609 --> 00:03:27.389 tell that story of caregiving, based on the story of three lives, mine, and my 00:03:27.389 --> 00:03:29.909 parents to do that in an interesting way. 00:03:30.279 --> 00:03:32.819 Again, there were some wonderful guides out there, 00:03:32.849 --> 00:03:34.619 outstanding guides on caregiving. 00:03:35.009 --> 00:03:38.659 And I wanted to give something that was truly interesting 00:03:38.709 --> 00:03:40.209 and, I'm a vulnerable guy. 00:03:40.209 --> 00:03:43.409 I am, I'm happy to be vulnerable and to do that story. 00:03:43.409 --> 00:03:49.469 So I saw that opportunity as well to write a book that while it is about me, 00:03:49.859 --> 00:03:53.099 it's for the reader, and I could do that. 00:03:53.219 --> 00:03:56.209 And if that answers your question a very long-winded way. 00:03:56.259 --> 00:03:59.649 Candace Dellacona: So first of all, we're so lucky that you actually took that 00:03:59.649 --> 00:04:06.139 opportunity to write this story, and in some ways it's a cross between a memoir 00:04:06.139 --> 00:04:11.479 and a guide for those of us who find our selves in similar situations and caring 00:04:11.479 --> 00:04:14.149 for older relatives or older loved ones. 00:04:14.368 --> 00:04:17.518 I really admire the way that you framed it, saying it's kind of 00:04:17.518 --> 00:04:18.688 a love letter to your parents. 00:04:18.688 --> 00:04:21.148 Why don't you tell us a little bit about your mom and your dad? 00:04:22.793 --> 00:04:24.353 Jonathan Knaul: Uh, I might get a little choked up. 00:04:24.388 --> 00:04:25.458 I tend to do that. 00:04:25.508 --> 00:04:26.408 I cry at movies. 00:04:26.408 --> 00:04:29.883 I cried watching ET so, I'm that type of person. 00:04:30.173 --> 00:04:31.853 They're really amazing people. 00:04:31.913 --> 00:04:33.393 Uh, no specific order. 00:04:33.633 --> 00:04:37.193 My father first, who really was an extraordinary man, if 00:04:37.193 --> 00:04:40.593 anybody was a Renaissance man, it was my father, Sigma Knaul. 00:04:40.613 --> 00:04:44.623 He was born in Poland in 19, uh, well actually it could be 23 or 24. 00:04:44.623 --> 00:04:50.313 There's a debate on the records, but, he was born, in that year timeframe and, so 00:04:50.313 --> 00:04:53.453 his family was rounded up in, late 1939. 00:04:53.553 --> 00:04:57.703 And, off to ghettos and then off to camps and of a very 00:04:57.703 --> 00:05:00.053 large family, only he survived. 00:05:00.153 --> 00:05:01.833 He survived a year in Auschwitz. 00:05:01.833 --> 00:05:05.053 From Auschwitz, he was transferred to Dachau, out of the frying 00:05:05.053 --> 00:05:06.763 pan and into the fire literally. 00:05:07.513 --> 00:05:08.953 He survived Dachau as well. 00:05:09.043 --> 00:05:12.103 He and a half brother survived from a very large family. 00:05:12.593 --> 00:05:16.163 His story of what he went through and his story of survival on 00:05:16.163 --> 00:05:17.693 their own are extraordinary. 00:05:17.693 --> 00:05:22.703 And then he came to Canada and became, a successful, businessman, if you will. 00:05:22.703 --> 00:05:25.403 And, he was an Olympic level skier. 00:05:25.823 --> 00:05:28.883 Had it not been for the war, I'm sure he would've been in the 00:05:28.883 --> 00:05:30.233 Olympics for downhill skiing. 00:05:30.233 --> 00:05:33.893 He taught himself skiing on wooden boards and leather boots 00:05:33.953 --> 00:05:35.803 and, he could dance on skis. 00:05:36.173 --> 00:05:40.343 And he spoke six, seven, I have to look again, six or seven languages, 00:05:40.523 --> 00:05:42.233 literally of all fluently. 00:05:42.633 --> 00:05:44.008 And he was a handsome guy too. 00:05:44.448 --> 00:05:46.218 And so handsome devil. 00:05:46.578 --> 00:05:47.928 He was quite amazing. 00:05:48.828 --> 00:05:54.658 An athlete, he suffered terrible PTSD, and at a time when, in the 00:05:54.658 --> 00:05:59.098 seventies, through the fifties, sixties, seventies, Holocaust survivors were 00:05:59.098 --> 00:06:02.828 not talking about, what they went through outside of a very closed circle. 00:06:02.828 --> 00:06:05.198 And generally they weren't speaking about that. 00:06:05.198 --> 00:06:06.338 And my father was one of them. 00:06:06.338 --> 00:06:09.398 And the treatment wasn't there either in the recognition of PTSD. 00:06:09.928 --> 00:06:11.848 So my childhood with him as much as I. 00:06:12.568 --> 00:06:15.848 I loved and adored my father was very challenging and 00:06:15.878 --> 00:06:17.978 he was very much a monster. 00:06:18.348 --> 00:06:19.158 Not his fault. 00:06:19.618 --> 00:06:22.108 Very challenging, childhood for me with him. 00:06:22.138 --> 00:06:27.748 But he was an amazing man and, I could go on and talk about him for a long time. 00:06:27.748 --> 00:06:31.618 My mother was British and she was born in definitely 1923. 00:06:32.088 --> 00:06:36.308 They were essentially the same age and, she lived through the bombing in London. 00:06:36.888 --> 00:06:40.428 She went and helped out at the evacuation at Dunkirk at age 16. 00:06:40.578 --> 00:06:42.528 Just got on a boat and went out and helped. 00:06:43.128 --> 00:06:44.298 That gets me a little cracked up. 00:06:44.388 --> 00:06:45.198 Uh, pardon. 00:06:45.588 --> 00:06:46.128 And. 00:06:47.023 --> 00:06:48.193 She lived through the whole bombing. 00:06:48.193 --> 00:06:51.653 She was a breadwinner of the family, during a very challenging time. 00:06:52.193 --> 00:06:57.103 And, she was a cross between, queen Elizabeth and Betty White. 00:06:57.203 --> 00:07:00.543 Her sense of humor was extraordinary, and so witty. 00:07:00.733 --> 00:07:04.783 And she was so graceful and, regal, I would say regal. 00:07:05.023 --> 00:07:09.833 And, so she lived all the way till, she almost made it to 99 and 00:07:09.833 --> 00:07:11.843 she was, really quite something. 00:07:12.443 --> 00:07:16.393 Um, And of course I adored my mother and she, despite all what she went 00:07:16.393 --> 00:07:21.193 through, was, a very mentally healthy person and really a rock and, if I 00:07:21.193 --> 00:07:24.053 turned out well, I'm, I'm thankful to both my parents, but certainly 00:07:24.053 --> 00:07:25.493 my mother played a big role in that. 00:07:25.493 --> 00:07:27.463 So she was, she was very special. 00:07:27.463 --> 00:07:27.523 Yeah. 00:07:27.798 --> 00:07:27.898 Candace Dellacona: Yeah. 00:07:28.508 --> 00:07:32.158 I think, it's interesting when you talk about your relationship with your 00:07:32.158 --> 00:07:40.198 parents and in the context of caregiving where you know you can have complicated 00:07:40.723 --> 00:07:44.353 relationships with your parents and your loved ones and still love them 00:07:44.813 --> 00:07:50.393 and when it comes to the caregiving space and you take on this role for 00:07:50.393 --> 00:07:55.433 someone who you may have a complicated relationship with, one can see why it 00:07:55.433 --> 00:07:59.543 could be so challenging aside from the fact that it's just challenging to start. 00:07:59.543 --> 00:08:05.153 So I love how candid you are when you talk about the complexity of that relationship. 00:08:06.018 --> 00:08:11.838 One of the things that we talked about earlier was the impact that the older 00:08:11.838 --> 00:08:17.648 generation, and their trauma had on them, because it's a generation of people 00:08:17.678 --> 00:08:23.888 who by and large never really had the accessibility to therapy and things like 00:08:23.888 --> 00:08:25.958 that, that we have and those resources. 00:08:25.958 --> 00:08:30.488 So our heart goes out to that older generation that didn't have the 00:08:30.488 --> 00:08:36.578 same support perhaps that your dad obviously deserved and very much needed. 00:08:36.578 --> 00:08:40.088 It's wonderful that he found someone as extraordinary as your mom and he 00:08:40.088 --> 00:08:41.768 was able to create a life with her. 00:08:41.768 --> 00:08:45.848 I know your father had passed away, significantly earlier than your mom did, 00:08:45.908 --> 00:08:47.588 and you were a caregiver for your mom. 00:08:47.588 --> 00:08:48.278 Is that right? 00:08:49.413 --> 00:08:52.973 Jonathan Knaul: Yeah, I was, and I care for my father too. 00:08:53.163 --> 00:08:54.843 And so I bring that out in the book. 00:08:55.313 --> 00:08:56.633 I can mention that too here. 00:08:56.713 --> 00:08:58.513 My father died at age 60. 00:08:58.843 --> 00:09:00.403 It started, it was very fast. 00:09:00.403 --> 00:09:01.663 He lasted about six months. 00:09:01.663 --> 00:09:06.403 It was stomach cancer, probably related, largely in part to, malnutrition 00:09:06.403 --> 00:09:08.263 suffered, during the Holocaust. 00:09:08.753 --> 00:09:12.683 So he was well taken care of in Mount Sinai Hospital in downtown Toronto. 00:09:12.683 --> 00:09:17.273 But, my sister and I, you know, this was the 1980s. 00:09:17.273 --> 00:09:19.673 Cancer wards were not as advanced as they are now. 00:09:19.723 --> 00:09:22.423 They were really pretty good, but still it was the eighties. 00:09:22.983 --> 00:09:26.813 So a lot of support from my sister, myself, and my mother. 00:09:26.913 --> 00:09:30.788 Healthcare workers, are always, under-resourced in most places, 00:09:30.838 --> 00:09:35.018 so I did do a lot of my father's care in the hospital, full on 00:09:35.048 --> 00:09:36.668 even for his most private needs. 00:09:37.098 --> 00:09:38.358 And I was 15 at the time. 00:09:38.358 --> 00:09:40.688 So that was, a baptism by fire, if you will. 00:09:40.903 --> 00:09:41.633 Candace Dellacona: Yeah, I'll say. 00:09:41.703 --> 00:09:46.353 Jonathan Knaul: And, despite his, the complicated relationship, I was, it was 00:09:46.353 --> 00:09:50.628 not only my duty, but I loved him and I was gonna do that for him, for sure. 00:09:50.698 --> 00:09:52.738 And so we made him comfortable until the end. 00:09:52.738 --> 00:09:55.258 And yes, my mother, that was much later in life. 00:09:55.308 --> 00:09:57.978 And that it really went on for about 10 or 15 years. 00:09:57.978 --> 00:10:01.963 She had a slow decline and then it picked up in the last, the rate of decline 00:10:01.963 --> 00:10:03.313 picked up in the last couple years. 00:10:03.313 --> 00:10:05.783 So, and I did take care of her, moved in with her and took 00:10:05.783 --> 00:10:07.253 care of her full on as well. 00:10:07.398 --> 00:10:09.978 Candace Dellacona: As a caregiver in the context of your caregiving, there were 00:10:09.978 --> 00:10:11.898 two very different roles that you played. 00:10:11.898 --> 00:10:16.288 One, you were child still when you were taking care of your dad, and then, when 00:10:16.288 --> 00:10:18.418 you became the caregiver for your mom. 00:10:18.733 --> 00:10:23.233 You were obviously very much an adult and she suffered a disease of the aged 00:10:23.233 --> 00:10:27.793 and someone who was more vulnerable probably because of her mental compromise. 00:10:28.813 --> 00:10:35.233 And so in the context of, you writing this book and, providing advice and 00:10:35.233 --> 00:10:40.783 the guide to the readers, what is something as a caregiver that, you 00:10:40.783 --> 00:10:44.533 were able to do for your mom that makes you maybe the most proud? 00:10:46.063 --> 00:10:46.143 Jonathan Knaul: Hmm. 00:10:47.328 --> 00:10:52.673 I think there's a lot of things, if I could wrap it up in one, I believe 00:10:52.673 --> 00:10:54.743 it was retaining her dignity for her. 00:10:55.433 --> 00:10:57.623 My mother was a very dignified person. 00:10:58.283 --> 00:11:03.413 Anybody who gets ill and now needs care and can't care for themselves, 00:11:04.063 --> 00:11:08.853 is vulnerable to losing their dignity and really, across the spectrum 00:11:08.853 --> 00:11:13.003 of human beings, we all, strive to retain a certain level of dignity. 00:11:13.333 --> 00:11:15.073 And dignity is so important. 00:11:15.073 --> 00:11:24.043 So I really strove to do that for her, even when I was, you know, um, dementia. 00:11:24.253 --> 00:11:28.753 People with dementia communicate in different ways, but there's a person, no 00:11:28.753 --> 00:11:33.803 matter how bad the symptoms are, and their condition, there's still a person inside. 00:11:34.403 --> 00:11:37.763 There was a heart pumping and there is an emotional and a 00:11:37.763 --> 00:11:39.293 spiritual heart in there too. 00:11:39.983 --> 00:11:44.643 And so, when I had to take care of her very private needs, as much as 00:11:44.643 --> 00:11:49.993 that was hard for me, it was probably harder for her to have her son do that. 00:11:50.473 --> 00:11:54.673 And I approached in a way that, would provide her with dignity. 00:11:55.633 --> 00:12:00.083 Is what I was thinking of, when I moved her into dementia care, which 00:12:00.083 --> 00:12:01.523 was a very difficult thing to do. 00:12:01.943 --> 00:12:05.873 I still strove to do that and so I made sure that her hair 00:12:05.873 --> 00:12:06.923 was really important to her. 00:12:07.373 --> 00:12:09.443 I made sure that her hair was taken care of. 00:12:09.873 --> 00:12:14.513 I made sure that they dressed her in her clothes, and did the little things 00:12:14.513 --> 00:12:16.073 I knew made a difference for her. 00:12:16.553 --> 00:12:18.508 If I could, use a good example. 00:12:18.828 --> 00:12:20.148 My sister loves this one. 00:12:20.208 --> 00:12:24.848 I sewed her stockings for her, her legs got particularly, she lost 00:12:24.848 --> 00:12:26.528 a lot of weight in the last year. 00:12:26.978 --> 00:12:30.028 But I still, I knew that she wanted to be dressed well. 00:12:30.388 --> 00:12:34.198 Her stockings were stay up stockings and her legs had gotten quite a bit skinnier 00:12:34.198 --> 00:12:36.808 and they weren't staying up anymore, and we couldn't find a size for her. 00:12:36.808 --> 00:12:39.268 So I sowed them at the top. 00:12:39.268 --> 00:12:42.548 So they were just tight enough that they would stay up because, seeing her 00:12:42.788 --> 00:12:46.358 when I walked around and saw her one day in the dementia care facility and 00:12:46.358 --> 00:12:50.978 her stockings were around her ankles, I'm like, that's just not, I knew that 00:12:51.038 --> 00:12:52.478 at some level that would bother her. 00:12:52.478 --> 00:12:56.018 So, um, to make a simple example. 00:12:56.033 --> 00:12:58.813 Candace Dellacona: Yeah, that's a great example and I think advocacy 00:12:58.813 --> 00:13:02.993 also can look, different in so many different ways than what you just 00:13:03.263 --> 00:13:09.943 described is really an act of love, but an act of advocacy as well, because. 00:13:10.798 --> 00:13:15.748 It was really important to you for the outside world to see your mother as 00:13:15.748 --> 00:13:19.828 this regal and dignified person because you knew it was important to her. 00:13:20.428 --> 00:13:25.228 So it's a really beautiful gesture for any of our listeners when they think 00:13:25.228 --> 00:13:29.888 that, perhaps they're at their end of their rope and they're looking for ways to 00:13:29.888 --> 00:13:35.238 help their loved one when they're so far away, because of their mental incapacity. 00:13:35.913 --> 00:13:40.563 These small gestures really can mean so much, and, truly 00:13:40.563 --> 00:13:42.603 is, can be an act of love. 00:13:42.603 --> 00:13:45.203 So I really admire that answer. 00:13:45.783 --> 00:13:52.683 You're coming at this as a son, as someone who has been in sort of these high 00:13:52.683 --> 00:13:55.323 pressure situations your entire career. 00:13:55.323 --> 00:14:00.438 You're making all of these really split second decisions as a 00:14:00.438 --> 00:14:03.138 pilot, really stressful decisions. 00:14:03.138 --> 00:14:09.368 And so how do you think your career as a pilot, if at all, 00:14:09.458 --> 00:14:12.998 helped you in your caregiving role? 00:14:15.008 --> 00:14:16.928 Jonathan Knaul: Yeah, it, it helped me out tremendously. 00:14:16.928 --> 00:14:20.128 I have developed, mechanisms to deal with, stress. 00:14:20.548 --> 00:14:21.178 For sure. 00:14:21.178 --> 00:14:24.853 I've had to and I've had training in it as well too in my military career. 00:14:24.853 --> 00:14:27.873 And, in all that experience I've had, builds on that. 00:14:28.223 --> 00:14:28.853 All that helped. 00:14:29.033 --> 00:14:33.428 I wrote a chapter in the book just about decision making, and in there 00:14:33.428 --> 00:14:36.418 I tried to break it down in time because here's the key with tough 00:14:36.418 --> 00:14:39.578 decisions is, use the time available. 00:14:39.968 --> 00:14:44.488 So the split second decisions, that wasn't, that did help me in a 00:14:44.488 --> 00:14:46.108 certain regard in caring for my mom. 00:14:46.208 --> 00:14:50.528 And, I also have experience in a healthcare first responder role too. 00:14:50.578 --> 00:14:51.388 So that helped. 00:14:51.838 --> 00:14:55.018 But, the thing where the longer term decisions, those are the tough ones. 00:14:55.068 --> 00:14:59.358 And in your background as an estate, lawyer, you'll well understand things 00:14:59.358 --> 00:15:02.468 like making decisions on powers of attorney, that sort of thing. 00:15:02.518 --> 00:15:07.168 I really tried to look at those bigger decisions and understand about 00:15:07.168 --> 00:15:11.318 the time I had available and always understand, and I worked with my sister 00:15:11.318 --> 00:15:13.418 on this and I love my sister dearly. 00:15:13.418 --> 00:15:17.088 And thankfully we were, we are, we were close and we were able to, we had 00:15:17.088 --> 00:15:20.613 our challenges for sure, but we were able to meet in the middle and realize 00:15:20.613 --> 00:15:22.503 that the decisions we were making. 00:15:23.548 --> 00:15:27.798 Ones that we had more time with, which was most of the time were in, had 00:15:27.798 --> 00:15:29.388 to be in our mother's best interest. 00:15:29.968 --> 00:15:33.518 And that's a tough time, the tough one when you're caregiving, you can 00:15:33.518 --> 00:15:35.528 get very, we all get very emotional. 00:15:35.838 --> 00:15:37.578 We're humans and we're under stress. 00:15:37.608 --> 00:15:42.138 And to recognize that those are normal emotions, responding to stress, and 00:15:42.138 --> 00:15:46.218 to try and recognize them, put them over on the side and then say, what's 00:15:46.218 --> 00:15:50.618 the best decision that I can make in the patient or the loved one's 00:15:50.618 --> 00:15:53.078 interest and gosh, do I have time? 00:15:53.078 --> 00:15:55.058 So can I wait till tomorrow? 00:15:55.188 --> 00:15:57.798 And, and if it can, let's get all the facts that we can. 00:15:57.798 --> 00:16:01.423 So I think that it wasn't just as a test pilot that helped me. 00:16:02.383 --> 00:16:05.903 It was more as a military commander because, especially in places like 00:16:05.933 --> 00:16:09.833 Afghanistan, I was responsible for a lot of people and I had to 00:16:09.833 --> 00:16:13.923 send, I went out the door, into threat environments with them. 00:16:14.253 --> 00:16:18.323 And oftentimes, I had to send them out while I stayed, inside the wire. 00:16:18.763 --> 00:16:21.763 And so you have to make some really tough decisions in those cases. 00:16:21.763 --> 00:16:23.373 And, so that, that helped me. 00:16:23.948 --> 00:16:25.328 Candace Dellacona: So, it's interesting you bring up your 00:16:25.328 --> 00:16:26.768 role as a commander, right? 00:16:26.768 --> 00:16:30.068 Because in, in a way, when we become a caregiver for someone 00:16:30.068 --> 00:16:34.508 who is not able to advocate for themselves, that's who we become in 00:16:34.508 --> 00:16:36.848 their lives to the outside world. 00:16:37.188 --> 00:16:41.208 And maybe even to our siblings in a way that our siblings don't love. 00:16:41.548 --> 00:16:46.888 Let's talk a little bit about how to share that commander role and 00:16:46.888 --> 00:16:51.298 taking charge and having someone else who may not see eye to eye on the 00:16:51.298 --> 00:16:53.608 way perhaps things should be done. 00:16:53.608 --> 00:16:58.678 Do you have any advice for our caregivers who are trying to get along with their 00:16:58.678 --> 00:17:03.148 fellow caregivers, whether it's a sibling or a spouse or someone like that. 00:17:04.523 --> 00:17:09.143 Jonathan Knaul: It's really some of the most difficult thing or things to do. 00:17:09.693 --> 00:17:12.633 I think first and foremost is to take care of yourself. 00:17:12.973 --> 00:17:16.683 It's like the oxygen mask, council that you get when you board an airplane. 00:17:17.073 --> 00:17:20.043 Put on your oxygen mask before you put on your kids' oxygen mask. 00:17:20.043 --> 00:17:22.803 You gotta take care of yourself first, because when we don't 00:17:22.803 --> 00:17:25.873 take care of ourselves, then emotions start to run higher. 00:17:26.278 --> 00:17:28.098 And, we're just less able. 00:17:28.398 --> 00:17:31.128 And if you're not in the best position, then you can't give 00:17:31.128 --> 00:17:32.388 the best care to the loved one. 00:17:32.788 --> 00:17:35.638 And so it becomes harder to work with the people you have to work with, 00:17:35.638 --> 00:17:38.058 whether it be siblings or whoever. 00:17:38.358 --> 00:17:40.188 So find those ways to take care of yourself. 00:17:40.268 --> 00:17:44.108 And the other thing I had to do sometimes was I really, I had to take 00:17:44.168 --> 00:17:48.398 those breaks to say that those were emotions and I need to put them aside. 00:17:48.998 --> 00:17:52.838 And the other thing I really had to realize too, this is a tough one. 00:17:53.828 --> 00:17:56.418 Is that despite what you're sensing from the other person, 00:17:56.658 --> 00:17:58.488 it's like any negotiation you do. 00:17:59.028 --> 00:18:02.818 Despite the challenges I might have been feeling, getting from my sister, 00:18:03.118 --> 00:18:08.368 I had to realize that my sister's goal in all of this was the same as mine. 00:18:08.878 --> 00:18:11.128 She wanted the best for our mother. 00:18:11.968 --> 00:18:18.518 And, and she was doing the best she could to try and parlay that, to transmit that. 00:18:18.978 --> 00:18:21.078 And maybe I wasn't seeing that as a result. 00:18:21.178 --> 00:18:24.178 And so I had to step back and recognize that. 00:18:24.478 --> 00:18:26.878 And when I did that, things got easier. 00:18:26.968 --> 00:18:30.318 And then I would also say to her, Felicia, I adore my sister. 00:18:30.318 --> 00:18:31.968 She's, I look up to her too. 00:18:31.968 --> 00:18:32.748 She's amazing. 00:18:33.148 --> 00:18:34.378 I would say, Felicia, hey. 00:18:35.428 --> 00:18:37.858 We're in violent agreement, and all. 00:18:38.428 --> 00:18:39.808 And then things will cool off. 00:18:39.888 --> 00:18:42.938 And also I think a key term is, disagreement. 00:18:42.998 --> 00:18:44.748 I would say this to my subordinates too. 00:18:44.748 --> 00:18:48.118 My troops, disagreement does not equal disloyalty. 00:18:48.658 --> 00:18:50.158 Please not in front of everybody. 00:18:50.158 --> 00:18:53.408 Don't tell me that you disagree and you're, take me aside. 00:18:53.408 --> 00:18:57.248 Let's do this privately and you can tell me about all your disagreement. 00:18:57.668 --> 00:18:58.508 And that's good. 00:18:58.868 --> 00:19:02.168 Disagreement is healthy and it does not equal disloyalty, and 00:19:02.168 --> 00:19:03.608 there's a time and place to do that. 00:19:04.068 --> 00:19:09.048 I'll add that it's not only with a sibling or somebody you love, but I 00:19:09.048 --> 00:19:11.328 employed personal support workers. 00:19:12.093 --> 00:19:16.023 And working with them could be really, really difficult at times. 00:19:16.473 --> 00:19:21.693 And they were my employees and I could not treat them like military troops. 00:19:22.353 --> 00:19:26.603 And the biggest thing for me to recognize was, which is often the 00:19:26.603 --> 00:19:31.313 case in the personal support worker industry, is that these folks, 00:19:31.673 --> 00:19:35.763 traditionally, I look to pay them well, but traditionally are not paid well. 00:19:36.413 --> 00:19:37.193 They do not. 00:19:37.508 --> 00:19:41.198 Come from wealthy environments and they're often living in 00:19:41.198 --> 00:19:45.608 multi-generational homes where they are also taking care of a loved one. 00:19:46.118 --> 00:19:50.588 So after they take care of your loved one for eight to 12 hours a day, 00:19:50.708 --> 00:19:54.368 they go home and they're taking care of a loved one in their own home. 00:19:54.788 --> 00:19:56.318 Plus they multi-generational. 00:19:56.348 --> 00:20:01.358 They have kids, they have spouses, and so their life is incredibly complex. 00:20:01.898 --> 00:20:03.193 And so I had to recognize that. 00:20:03.653 --> 00:20:08.483 Candace Dellacona: I've had a lot of, guests, and we talk often about 00:20:08.513 --> 00:20:12.493 caregivers and the personal needs attendant or the home care attendant, 00:20:12.493 --> 00:20:14.143 whatever the term you wanna give them. 00:20:14.593 --> 00:20:17.443 And something that you just said, Jonathan, I don't think anyone else has 00:20:17.443 --> 00:20:21.353 really thought of is, and you're right, that, the caregivers that we're employing 00:20:21.353 --> 00:20:26.388 to help us advocate and care for our loved ones are also dealing with similar issues. 00:20:26.748 --> 00:20:32.268 So that's a really nice reminder for those of us on the other side to think about 00:20:32.268 --> 00:20:36.548 it as well as seeing it from Felicia's side in your experience and looking at 00:20:36.548 --> 00:20:43.928 your sister and knowing that she too has the best of intentions to advocate for 00:20:43.928 --> 00:20:48.728 your mother, just as all of our listeners who have siblings or other people in 00:20:48.728 --> 00:20:50.408 their family who are trying to help. 00:20:50.788 --> 00:20:55.508 If you take a step back and think about, your ability to advocate 00:20:55.508 --> 00:20:59.648 together and what that might look like and it is hard to give up control 00:20:59.648 --> 00:21:00.873 and delegate, and I'm sure it was. 00:21:01.523 --> 00:21:06.013 For someone like you too, who was used to being the commander, and certainly 00:21:06.013 --> 00:21:08.743 that was what you were relied on to do. 00:21:08.773 --> 00:21:12.193 You certainly couldn't back down on making a decisions because people 00:21:12.193 --> 00:21:15.793 were relying on you in the same way your mother was relying on you. 00:21:15.793 --> 00:21:20.023 And one of the things that you also said, which I loved, was when you 00:21:20.023 --> 00:21:22.123 have the time to make these decisions. 00:21:22.123 --> 00:21:25.753 And I think that's really important because when you love somebody with 00:21:25.753 --> 00:21:30.958 dementia, it doesn't mean that they can't participate in the decisions 00:21:30.958 --> 00:21:35.008 being made for them, and that's one of the things that you also pointed out. 00:21:36.758 --> 00:21:39.608 Jonathan Knaul: Yeah, if if I've, can I give you a quick example? 00:21:39.608 --> 00:21:40.060 Is there time for that? 00:21:40.238 --> 00:21:40.298 Yeah, 00:21:40.528 --> 00:21:41.068 Candace Dellacona: Yeah. 00:21:41.828 --> 00:21:45.398 Jonathan Knaul: We had a real challenge, with my mother had put 00:21:45.398 --> 00:21:51.458 in her will that she wanted to be cremated and she had revisited that 00:21:51.458 --> 00:21:53.468 will many times over the years. 00:21:53.958 --> 00:21:57.448 And, was a very exhausting and adamant I want to be cremated. 00:21:57.948 --> 00:22:02.258 And she had even bought herself a plot, to be buried next to our father. 00:22:03.988 --> 00:22:06.988 Except that the Jewish religion doesn't allow for cremation, and 00:22:06.988 --> 00:22:09.898 the plot she purchased didn't allow for cremated remains. 00:22:10.408 --> 00:22:12.418 And so this caused a lot of confusion. 00:22:12.828 --> 00:22:17.588 Because of my legal position I had access to the will early on, and I knew that 00:22:17.978 --> 00:22:21.398 my sister asked for the will I gave it to her right away when she did ask for. 00:22:22.028 --> 00:22:24.698 And, she found out about that, which I hadn't really thought about. 00:22:24.758 --> 00:22:25.748 And this was a problem. 00:22:26.138 --> 00:22:30.248 And so we really had this controversial over our mom must be cremated. 00:22:30.608 --> 00:22:32.678 And one of us was like, that's okay. 00:22:32.678 --> 00:22:34.363 And the other one was like, we can't do that. 00:22:34.993 --> 00:22:37.073 And it became quite heated. 00:22:37.223 --> 00:22:41.708 But ultimately I said, let's ask mom what she really wants 00:22:41.708 --> 00:22:43.598 now, but Mom has dementia. 00:22:43.898 --> 00:22:46.238 I said, but yeah, she can still communicate. 00:22:46.718 --> 00:22:50.193 And where my mother was really good at communicating was if we got 00:22:50.193 --> 00:22:55.218 into anything that was logical or technical she lost that capability. 00:22:55.578 --> 00:22:59.028 But anything that was emotional, she was right there. 00:22:59.028 --> 00:23:00.798 I'm like, dementia defied. 00:23:00.798 --> 00:23:01.878 And she was there with us. 00:23:02.448 --> 00:23:03.948 So we had that discussion with her. 00:23:03.948 --> 00:23:07.988 We brought the rabbi into that discussion and and my mother, we got 00:23:07.988 --> 00:23:12.208 to a place where it was my mother said, we, difficult discussion. 00:23:12.208 --> 00:23:15.298 We had to do it two or three times, but we broached it carefully. 00:23:15.298 --> 00:23:16.348 We brought her into the discussion. 00:23:16.348 --> 00:23:19.938 She said if it makes you all happier, I'm okay to be buried. 00:23:20.968 --> 00:23:22.078 And that's what we went with. 00:23:22.108 --> 00:23:25.678 And, it really just reduced a whole lot of things. 00:23:25.708 --> 00:23:26.698 It was very hard to do. 00:23:26.708 --> 00:23:29.318 Where we knew our mother was probably only gonna last another year. 00:23:29.318 --> 00:23:33.218 We had to sit down and talk with her about what she wants to be done with herself. 00:23:33.308 --> 00:23:37.253 And, we did it, over the course of three conversations during COVID. 00:23:38.218 --> 00:23:41.518 Me sitting with my mother like I am with you now, the rabbi, 00:23:41.908 --> 00:23:43.408 virtual, my sister virtual. 00:23:43.408 --> 00:23:45.568 'cause I was back in Toronto with my mom. 00:23:45.573 --> 00:23:49.138 My, my sister was in Miami where she lived at the time with her family. 00:23:49.188 --> 00:23:53.868 But we got there and, gosh, when the day came that my mother died, having that 00:23:53.868 --> 00:23:58.618 sorted ahead of time when things are really emotional, when somebody passes, 00:23:59.578 --> 00:24:00.928 we didn't have to worry about that. 00:24:01.618 --> 00:24:02.548 Because we have it sort. 00:24:02.833 --> 00:24:03.313 Candace Dellacona: Yeah. 00:24:03.313 --> 00:24:08.943 And it's sort of a masterclass example of, dealing with a difficult topic, 00:24:09.243 --> 00:24:14.753 dealing with somebody who doesn't have full capacity, dealing with, the possible 00:24:14.753 --> 00:24:16.763 disagreement among family members. 00:24:16.763 --> 00:24:21.158 And it sounds like despite the fact that it was probably pretty charged, 00:24:21.368 --> 00:24:23.258 you had a really successful outcome. 00:24:23.258 --> 00:24:27.668 And it's a great lesson to all of us that there really shouldn't be a topic 00:24:27.668 --> 00:24:29.918 that's off limits as hard as it is. 00:24:29.918 --> 00:24:34.388 And I think that's one of the things that, you brought out in your book and our 00:24:34.388 --> 00:24:39.108 conversations have been, you can ask me anything that, this should be a subject 00:24:39.108 --> 00:24:40.848 that is brought out of the shadows. 00:24:41.208 --> 00:24:44.598 And you can talk about the most difficult and intimate things to 00:24:44.598 --> 00:24:46.188 make sure that you can advocate. 00:24:46.188 --> 00:24:50.058 Because what you did there too is you preserved her dignity. 00:24:50.058 --> 00:24:54.468 So going back to advocacy and dignity and determining the way in which she 00:24:54.468 --> 00:24:58.848 would be dispositioned is really a beautiful gift that you provided to her. 00:25:00.248 --> 00:25:01.508 Jonathan Knaul: Yeah, it worked out well. 00:25:01.508 --> 00:25:04.748 And I think the other thing there I had to realize was. 00:25:05.398 --> 00:25:09.088 For all those out there who are not, single children who have, siblings. 00:25:09.298 --> 00:25:12.418 We all have default mechanisms still to this day. 00:25:12.468 --> 00:25:15.768 My sister says a certain something and I have this reaction inside myself. 00:25:15.768 --> 00:25:20.208 I'm like, why am I reacting that way, what I did when I was five or seven years old? 00:25:20.418 --> 00:25:21.468 But I recognize it. 00:25:21.568 --> 00:25:22.403 And that's what I did. 00:25:22.603 --> 00:25:25.798 I tried to recognize those default mechanisms and to take myself 00:25:25.798 --> 00:25:30.203 back to being an adult and say, that's my honorable, lovely sister 00:25:30.203 --> 00:25:34.713 who's communicating in her own way and, I need to meet her there 00:25:34.938 --> 00:25:35.898 Candace Dellacona: Absolutely. 00:25:35.898 --> 00:25:37.873 I think that's a lesson for all of us, right? 00:25:37.873 --> 00:25:42.203 That it's really hard not to revert to those roles, that we once played 00:25:42.203 --> 00:25:46.373 and really try to put someone else's needs above ours, even our 00:25:46.373 --> 00:25:49.043 own personality, perhaps defects. 00:25:49.123 --> 00:25:52.393 So I love that you're right, and just stepping out of your way, taking 00:25:52.393 --> 00:25:55.693 the breath, taking a break, looking at somebody else with appreciation. 00:25:56.068 --> 00:25:57.628 All of these are good lessons. 00:25:57.958 --> 00:26:01.308 I think what I'll ask you, for the final question, and I really encourage 00:26:01.338 --> 00:26:07.038 all of you to go out and get yourself a copy of Jonathan's book because it 00:26:07.038 --> 00:26:13.708 really is such a beautiful, memento to his parents' story and his own journey. 00:26:14.278 --> 00:26:18.478 Can therefore serve as a guide to everyone else who's out there struggling 00:26:18.478 --> 00:26:19.918 and wants a different perspective. 00:26:19.918 --> 00:26:27.478 But one thing I wanna know, Jonathan, is is there something that you wish 00:26:27.478 --> 00:26:30.778 you knew when you first became a caregiver that kind of came to you 00:26:30.778 --> 00:26:36.328 slowly, that may have made it easier on you if you knew it maybe before? 00:26:38.043 --> 00:26:40.708 Jonathan Knaul: Yeah, and I, I think we spoke about this yesterday. 00:26:40.758 --> 00:26:44.438 I wish I knew how vulnerable I was gonna be to caregiver burnout. 00:26:45.328 --> 00:26:48.478 In my career, well, I grew up with a father who had PTSD and in 00:26:48.478 --> 00:26:50.908 my career I didn't suffer PTSD. 00:26:50.908 --> 00:26:51.748 I'm very lucky. 00:26:51.798 --> 00:26:53.088 It's individualistic. 00:26:53.188 --> 00:26:55.148 Many of my colleagues, subordinates did. 00:26:56.018 --> 00:26:58.498 I have many friends, who have PTSD. 00:26:58.568 --> 00:26:59.318 I understood it. 00:26:59.448 --> 00:27:03.388 It's in the family of, there's a family there along with PTSD of 00:27:03.388 --> 00:27:07.418 operational stress, and caregiver burnout is in there as well too. 00:27:07.898 --> 00:27:09.638 And then I experienced that with my mother. 00:27:09.738 --> 00:27:12.918 When I did experience it, I recognized it for what it was, and I got the 00:27:12.918 --> 00:27:17.538 help I needed, thankfully, thankful to my, like I needed to do that. 00:27:17.638 --> 00:27:19.498 But I just didn't expect it. 00:27:19.788 --> 00:27:24.358 So thankfully I had some training there, so I recognized it, and dealt with it. 00:27:24.388 --> 00:27:26.928 But, I just didn't expect it. 00:27:26.928 --> 00:27:31.878 I really just thought this, I was going to go forward as little soldier, me 00:27:31.878 --> 00:27:34.698 and, soldier on and take care of my mom. 00:27:34.698 --> 00:27:38.828 And, it was a bit of a slow onset and it just, all of a sudden there it was. 00:27:38.888 --> 00:27:40.558 And, and the effects are quite. 00:27:40.603 --> 00:27:45.933 It can be quite pronounced, frankly, both physically and mentally when that happens. 00:27:45.933 --> 00:27:46.983 I just didn't expect it 00:27:47.568 --> 00:27:51.138 Candace Dellacona: It and it goes to show you, you have this incredible 00:27:51.138 --> 00:27:56.433 background in training and how to deal with stress and really be able to 00:27:56.433 --> 00:28:01.233 metabolize information and make those decisions quickly, and it affected you 00:28:01.233 --> 00:28:03.363 in the same way it affects most of us. 00:28:03.363 --> 00:28:08.848 So I hope that gives, our listeners a feeling of a little bit of solace, that 00:28:08.848 --> 00:28:13.738 even among the best of us, none of us are immune from that burnout, and it's so 00:28:13.738 --> 00:28:19.578 important to recognize it and ask for help and really that's why I do the podcast. 00:28:19.578 --> 00:28:21.198 I think that's why you wrote the book. 00:28:21.598 --> 00:28:26.608 Really because creating a sense of community around a really difficult 00:28:26.608 --> 00:28:28.978 topic can make it a little better. 00:28:30.413 --> 00:28:30.998 Jonathan Knaul: Yeah, it is. 00:28:30.998 --> 00:28:33.128 I'll say, I'm really trying with that community. 00:28:33.178 --> 00:28:34.348 It's all about the community. 00:28:34.818 --> 00:28:37.748 I grew up in a boarding school that was Quaker and preached 00:28:37.748 --> 00:28:38.858 that idea of community. 00:28:38.858 --> 00:28:41.108 And I grew up that way, and I'm all about that. 00:28:41.648 --> 00:28:45.908 And so if I could add that, thank you for promoting part of me listeners to get the 00:28:45.908 --> 00:28:48.368 book, and I hope they do and it helps 'em. 00:28:48.418 --> 00:28:48.748 Please. 00:28:48.748 --> 00:28:52.318 Also, I recommend listeners to go to my website. 00:28:52.598 --> 00:28:54.798 one word, finalapproachbook.com. 00:28:55.298 --> 00:28:58.538 And if you subscribe, you'll get my free caregiving plan and my 00:28:58.538 --> 00:29:01.788 newsletter, which is all about, you are not alone as a caregiver. 00:29:02.218 --> 00:29:06.288 And I really, I take pride in joy in, building that community, and 00:29:06.288 --> 00:29:09.858 getting the word out to folks that I hope is really helpful to them. 00:29:10.328 --> 00:29:12.758 Candace Dellacona: Well, we are lucky to have you as part of that community, 00:29:12.758 --> 00:29:15.758 Jonathan, and from the bottom of my heart, thank you so much for being 00:29:15.758 --> 00:29:18.038 so vulnerable and sharing your story. 00:29:18.773 --> 00:29:22.913 And sharing your parents' story as well and your path to get here. 00:29:22.963 --> 00:29:28.873 Your book Final Approach, a Test Pilot Story of Caring for Loved Ones is out. 00:29:29.293 --> 00:29:31.873 And I really do recommend that everybody pick up a copy. 00:29:31.873 --> 00:29:34.483 And thank you so much for spending time with us, Jonathan. 00:29:34.843 --> 00:29:35.983 I really appreciate it. 00:29:35.983 --> 00:29:39.823 It was so much fun to get to know you, and fly safe. 00:29:40.828 --> 00:29:41.308 Jonathan Knaul: Thanks. 00:29:41.308 --> 00:29:44.908 It's been my honor and pleasure to be here on this podcast, Candace. 00:29:45.008 --> 00:29:48.008 You've been brilliant as, an interviewer and it's just really 00:29:48.008 --> 00:29:50.078 nice and again, absolutely my honor. 00:29:50.648 --> 00:29:55.028 And thank you to all listeners for tuning in once again, I really appreciate it. 00:29:55.088 --> 00:29:56.108 This has been a pleasure.