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Paul Kidwell on Grief, Caregiving & Moving Forward · Get Real with Jim Weiss

0:00
Speaker 1: Had that conversation with Paul Kidwell, go, oh my god,
0:03
Speaker 1: it was beyond my expectations. I think I went in
0:07
Speaker 1: not really knowing enough about a story. So of course,
0:10
Speaker 1: this is why I love doing this podcast, because I
0:13
Speaker 1: learned new things. Even when you prep it and I
0:16
Speaker 1: prep it and we get the questions all lined up,
0:18
Speaker 1: and yet somehow something comes out in it that you
0:21
Speaker 1: didn't quite understand, or we get enlightened about and find
0:26
Speaker 1: ways to collaborate. That's been the thing that has been
0:30
Speaker 1: exciting almost on every one of us. Are there ways
0:33
Speaker 1: to connect the dots and collaborate, which is the purpose
0:35
Speaker 1: of this whole thing, and get some significant impactful things
0:39
Speaker 1: done in the world to help people do better. And
0:42
Speaker 1: then also every time we have a guest and they
0:43
Speaker 1: email me and they're like, I have this person you
0:45
Speaker 1: can talk to, or it's always this interconnected thing. It's
0:48
Speaker 1: almost magical. Now we're creating a universe, a community, a world,
0:52
Speaker 1: which is what I love doing. It's what I've done
0:55
Speaker 1: best in my career. You see where things interset and
0:59
Speaker 1: where we miss each other. And by doing this and
1:02
Speaker 1: having this longer conversation with people that you make assumptions
1:06
Speaker 1: because that's faster and easier, but once you sit down
1:10
Speaker 1: and take the time, you find connections that are powerful.
1:14
Speaker 2: Yeah.
1:15
Speaker 1: So what do you learn about Paul that surprised you
1:17
Speaker 1: or that you didn't know? Well? I think probably the
1:20
Speaker 1: biggest was just how much and how quickly he's dived
1:23
Speaker 1: into caregiving awareness. I knew he had a podcast, I
1:27
Speaker 1: didn't know who he'd been interviewing or what had I
1:29
Speaker 1: had been following it that closely, to be honest, he
1:33
Speaker 1: really enlightened me about a lot of things relative to
1:37
Speaker 1: the space. I didn't know there was an advocacy group
1:40
Speaker 1: dedicated to caregiving. I didn't know the Bradley Cooper documentary.
1:44
Speaker 1: I was aware of, but didn't know the extent of it.
1:46
Speaker 1: And I think the fact that he could be an
1:49
Speaker 1: interesting voice and spokesperson in this sector also where we
1:54
Speaker 1: can cross collaborate within our primary audience, which is the
1:58
Speaker 1: pharmaceutical and health care industry, and we're making the caregiver
2:03
Speaker 1: more central. I mean, but think about it, It's become
2:06
Speaker 1: up in a million of our conversations when we talk
2:08
Speaker 1: to Kathy Juicy or and Carla right, I mean, just
2:12
Speaker 1: almost ubiquitous. My cancers society asko people. Cliff huttis, when
2:17
Speaker 1: you think about all the things we've talked about, caregiving
2:20
Speaker 1: comes into almost every conversation. For sure, caregiving and how
2:24
Speaker 1: resources needing to be well resourced. Well, it's underrecognized, right,
2:28
Speaker 1: I think again, what did we say on there? If
2:30
Speaker 1: you haven't been through it, you don't get it. So
2:33
Speaker 1: it becomes quite central. But young kids are burdened with
2:36
Speaker 1: it when they have a six elderly parent. I've seen
2:39
Speaker 1: it over and over and you listen to the stories
2:42
Speaker 1: over and over and they're probably are resources and shortcuts
2:46
Speaker 1: and lessons that we could all learn. So it's great.
2:49
Speaker 1: But he's putting it out there in the world. I'm
2:51
Speaker 1: really excited about it. You're a great collaborator for him too,
2:54
Speaker 1: So tune in.
2:55
Speaker 2: It's going to be such a good episode.
2:57
Speaker 1: Whether you're a caregiver or not. It's a pop sort
3:00
Speaker 1: of podcasts for them. Hey, Paul, welcome to get real
3:05
Speaker 1: with Jim Weiss. We go way back. Let's tell the
3:08
Speaker 1: audience how we first met.
3:10
Speaker 2: Do you remember It's about twenty years If I do, recall,
3:13
Speaker 2: I had just started out as an independent contractor, had
3:17
Speaker 2: been downsized from a local biotech here in the Cambridge area.
3:21
Speaker 2: They were one of the first companies to get involved
3:23
Speaker 2: in what they were calling pharmacode genomics back then now
3:26
Speaker 2: with the course's personalized medicine called very egenics.
3:29
Speaker 1: I remember that they were trying to enter.
3:31
Speaker 2: Into that whole personalized medicine field, and this is twenty
3:33
Speaker 2: years ago when very few people were even thinking about it.
3:35
Speaker 2: But anyhow, I think that they misjudged their entrance into
3:38
Speaker 2: the market. So the company sold itself for parts. And
3:41
Speaker 2: what I did was, I think something surprisingly was much needed.
3:46
Speaker 2: My specialty, as you know, Jim, was media relations. Not
3:48
Speaker 2: many people did it, not many people did it well,
3:51
Speaker 2: and few even liked it. I kind of checked all
3:53
Speaker 2: those boxes.
3:54
Speaker 1: And that specialized in health science biotech who kind of
3:59
Speaker 1: knew the industry too, which I think was a differentiator too.
4:02
Speaker 2: And of course, back then twenty years ago, it was
4:05
Speaker 2: certainly not the epicenter that it is now here in Cambridge.
4:08
Speaker 2: So I was getting a lot of my work from agencies,
4:11
Speaker 2: believe it or not, few had a component that addressed
4:14
Speaker 2: media relations. And then I was referred to you guys,
4:17
Speaker 2: you were a weiscom I think at.
4:19
Speaker 1: The time, well that's what I called myself and the
4:21
Speaker 1: firm that.
4:22
Speaker 2: Yeah, I think Diane Weiser was my first contact.
4:26
Speaker 1: For sure, that sounds right.
4:28
Speaker 2: What was unique about your agency, and really very unique
4:30
Speaker 2: at the time, was the fact that you actually had
4:33
Speaker 2: a strong media component.
4:34
Speaker 1: Yes, always did. It was always central.
4:37
Speaker 2: So that's how we met. And I think the big
4:39
Speaker 2: client back then was gen Tech, if I remember correctly.
4:42
Speaker 1: What drew you to the lifestyle of contracting, you know,
4:45
Speaker 1: rather than go into inside because I know I debated
4:48
Speaker 1: over the years, even while I was developing my business.
4:50
Speaker 2: Well, first of all, not many places had a specialty
4:54
Speaker 2: of media, so I was better off picking and choosing
4:57
Speaker 2: some of the companies with whom I could work. Also,
4:59
Speaker 2: I loved being a house husband and a house father,
5:01
Speaker 2: being able to do all the chauffeuring and all the
5:04
Speaker 2: after school practices and violin lessons and swim meets and
5:07
Speaker 2: so on, and I love that. And also I was
5:10
Speaker 2: a burgeoning cook, so allowed me to cook dinner every night.
5:13
Speaker 2: So it was sort of fused by personal as well
5:15
Speaker 2: as professional. But again, back then I realized that I
5:18
Speaker 2: only wanted to do media, that's all. I wanted to
5:21
Speaker 2: do ill account side of things. On the business side,
5:23
Speaker 2: wasn't appealing to me, and unlus I probably would have
5:25
Speaker 2: been horrible at it.
5:26
Speaker 1: Simple enough, you knew what you wanted and what you did,
5:29
Speaker 1: and and that's a good lesson. Know thyself and go
5:32
Speaker 1: for it. So you've been successful at it. In twenty
5:34
Speaker 1: twenty five, we both lost our wives, mine to cancer
5:38
Speaker 1: and Euros to Parkinson's disease.
5:40
Speaker 2: Yeah, I mean our diagnosis came in two thousand and seven.
5:43
Speaker 2: She was experiencing mild leg tremors at night, so we
5:47
Speaker 2: went to the neurologists here in Boston and he diagnosed
5:50
Speaker 2: her with Parkinson's. At that time, my reference point for
5:53
Speaker 2: Parkinson's was a few times I had seen Michael J.
5:56
Speaker 2: Fox on television sort of in the throes of that illness.
6:00
Speaker 2: See not a pretty sight. Even back then. He was
6:02
Speaker 2: really starting to show those tremors, full body almost, and
6:06
Speaker 2: so I thought that's what we were in store for.
6:08
Speaker 2: And I would say for the first eight or nine
6:11
Speaker 2: years Jim the medication did a great job of masking
6:14
Speaker 2: the symptoms. She was able to carry on with her work,
6:17
Speaker 2: social life. We traveled back to her home in China
6:20
Speaker 2: a few times and other places in the world, and
6:22
Speaker 2: so it was kind of business as usual. I was
6:24
Speaker 2: responsible at that time for medical appointments and making sure
6:28
Speaker 2: that she took her meds when she had to, sort
6:30
Speaker 2: of looking at the off time and if she needed
6:32
Speaker 2: a reboot of some of those meds. And then at
6:34
Speaker 2: about eight or nine years the symptoms started getting worse.
6:38
Speaker 2: She had much more difficulty walking. She actually experienced at work,
6:42
Speaker 2: which really led to the early retirement that we experienced
6:46
Speaker 2: what they called frozen gates and where she was literally
6:48
Speaker 2: freezing her tracks.
6:50
Speaker 1: Yeah, I've worked in the space, so I know a
6:52
Speaker 1: lot about this.
6:53
Speaker 2: And so and I would have to come and rescue her.
6:55
Speaker 2: And of course this is someone who I don't even
6:57
Speaker 2: think at that time she had told anybody at work
6:59
Speaker 2: that she had parking since, as I said, the medicine's
7:01
Speaker 2: did a great job of masking everything so she didn't
7:03
Speaker 2: have to. But the cat was sort of out of
7:05
Speaker 2: the bag and around the same time, and one of
7:07
Speaker 2: the crueler cuts of Parkinson's is half the people who
7:10
Speaker 2: are on those medications end up experiencing some type of
7:13
Speaker 2: cognitive decline and or dementia, and that happened to her.
7:16
Speaker 2: So it started out with delusions and hallucinations, progress into
7:20
Speaker 2: more agitated behavior. At the time, her physical capabilities were
7:24
Speaker 2: waning as well. She ended up the last three years
7:27
Speaker 2: were life in a wheelchair, unable to walk, and the
7:30
Speaker 2: cognitive issues became even worse, especially the agitated behavior, bouts
7:34
Speaker 2: of crying that would last an hour, hour and a half,
7:37
Speaker 2: lashing out at me physically, accusations of a myriad of
7:41
Speaker 2: infidelities with the home care workers, the health associates. I'd
7:45
Speaker 2: call it a punishing existence because that's what it was.
7:47
Speaker 2: I mean, punished both of us, her clearly much more
7:49
Speaker 2: than I, But as her primary caregiver, there was only
7:52
Speaker 2: so much I could do as this illness progress.
7:56
Speaker 1: Did you ever consider outsourcing it and putting her into
8:00
Speaker 1: some kind of assisted living or.
8:02
Speaker 2: Yes, many many times I would sort of reach that
8:05
Speaker 2: point where what I'm doing and this life at home
8:08
Speaker 2: is horrible. She needs to be in a better place.
8:10
Speaker 2: But at the same time, and I think we've all
8:12
Speaker 2: been to some of these places, and I always felt
8:14
Speaker 2: that I could give her the best care in comparison
8:17
Speaker 2: to an assisted living facility. It was a struggle, but
8:19
Speaker 2: I did, and she passed away at home, so I'm
8:21
Speaker 2: very thankful she would have been frightened in one of
8:24
Speaker 2: those facilities. I do want to subject her to that.
8:27
Speaker 2: I mean, she's going through so much as it was,
8:29
Speaker 2: I have that added burden, sort of mental anguish of
8:32
Speaker 2: being that facility all by herself. At least she was
8:35
Speaker 2: around a familiar face. In fact, one of the great
8:37
Speaker 2: things you mentioned my son, to his mother's urging, when
8:40
Speaker 2: he was six years old, he started playing violin.
8:42
Speaker 1: Yeah, you mentioned violin lessons.
8:44
Speaker 2: Three or four times a week over zoom during the
8:46
Speaker 2: last year. He would serenade her with playing the violin
8:51
Speaker 2: and she would sit and listen. She had this playlist
8:54
Speaker 2: that he learned how to play. Incredibly enough of her
8:56
Speaker 2: favorite was a Star Spangled band. That might be because
8:58
Speaker 2: she was a Chinese national was now a US citisteen
9:01
Speaker 2: had an appreciation for our country. So he did that.
9:04
Speaker 2: And you know, those are the little things that we
9:05
Speaker 2: could do if she was home and familiar food and
9:08
Speaker 2: every once in a while taking her out, and that
9:10
Speaker 2: would not happen in a facility. So as much as
9:13
Speaker 2: it was hard, certainly hard on me, I'm glad that
9:15
Speaker 2: we never pulled that trigger, so to speak.
9:18
Speaker 1: Moving back to the music point, I know I'm working
9:21
Speaker 1: with Renee Fleming on a project relative to music in
9:24
Speaker 1: the mind and how for dementia patients, for people who
9:29
Speaker 1: are going through a lot of neurological issues, music can
9:34
Speaker 1: actually be that one oasis and better experience for those
9:38
Speaker 1: Did you find that was essential and helpful?
9:42
Speaker 2: Yeah, we were lifelong classical music lovers and when our
9:46
Speaker 2: son was playing, we would go to let me see
9:47
Speaker 2: the symphony went out the Tanglewood in the summertime. I
9:50
Speaker 2: am and you mentioned Renee Fleming. Oh my god, she
9:53
Speaker 2: is the other love of my life. Forty years ago
9:55
Speaker 2: I got introduced to opera and for some strange reason
9:58
Speaker 2: I got hooked. So I'm an a fan of hers.
10:01
Speaker 2: Oh my god.
10:02
Speaker 1: Well, you'll get a good chance to tell her because
10:04
Speaker 1: we're going to be working closely with us, and I
10:06
Speaker 1: hope you'll help us on that project and get media
10:10
Speaker 1: coverage for it and stuff like that. That we're going
10:12
Speaker 1: to need raise a little more money that they couldn't
10:15
Speaker 1: raise or have been cut from the NIH budget or
10:18
Speaker 1: deprioritized in any case, that could change. But the point is,
10:22
Speaker 1: how do we keep the scientists who are following how
10:26
Speaker 1: music and the mind can really be manifested in facilities
10:32
Speaker 1: at people's home, just the use of it to help
10:35
Speaker 1: people cope with traumas and neurological disorders. I think there's
10:39
Speaker 1: a real opportunity there to do that. I mean it's informally.
10:43
Speaker 1: I know it got me through pretty much everything I
10:45
Speaker 1: went through.
10:46
Speaker 2: Well anecdotally in my life. It worked perfectly because during
10:50
Speaker 2: those times where he would play the violin over zoom,
10:53
Speaker 2: she was probably the calmest during that day when he
10:56
Speaker 2: would play. I always had classical music playing during the
10:59
Speaker 2: day when I worked here at home. If there was
11:01
Speaker 2: any serenity in her life, I'm a firm believer in
11:03
Speaker 2: the fact that it came largely from the environment that included.
11:06
Speaker 1: A lot of music. We're going to continue to explore that.
11:09
Speaker 1: So I look forward to working with you on that.
11:11
Speaker 2: Yeah, me too.
11:12
Speaker 1: So tell me what did the caregiving look like and
11:15
Speaker 1: how did it evolve over time? That's her condition deteriorate it.
11:19
Speaker 2: One of the things I realized that I couldn't do it.
11:21
Speaker 2: I was still trying to work as much as possible,
11:23
Speaker 2: and it was really starting to take its toll on me,
11:26
Speaker 2: particularly when she lost the ability to walk, and so
11:28
Speaker 2: there was a lot of physical lifting in and out
11:30
Speaker 2: of wheelchairs and onto the toilet, into bed, into chairs,
11:34
Speaker 2: what have you. And so that's when I realized that
11:36
Speaker 2: I need a little help at least for a few
11:38
Speaker 2: hours of the day. It would lessen the physical burden
11:42
Speaker 2: on me, but also would give me a little bit
11:43
Speaker 2: of time where I could in fact do some work.
11:45
Speaker 2: And so that's when I reached out to a company
11:48
Speaker 2: here has home health aids and secured someone who would
11:51
Speaker 2: come in five days a week, four hours each morning. Unfortunately,
11:55
Speaker 2: that's all out of pocket, which is part of the
11:57
Speaker 2: sadness of where we as family can gaber stand these
12:01
Speaker 2: days in terms of presenting that financial burden. Really interesting enough,
12:05
Speaker 2: I had to book four hours, but she only took two.
12:08
Speaker 2: For three years, I was giving away two hours, five
12:10
Speaker 2: days a week. So it was very, very hard. But
12:13
Speaker 2: I couldn't have done that. Talk about a return on investment,
12:15
Speaker 2: I mean, that's how I look at it. Not so
12:17
Speaker 2: much then, but it was a great benefit to my
12:19
Speaker 2: wife once she settled on the home health aid who
12:22
Speaker 2: ended up being with us for almost three years. They
12:24
Speaker 2: had a wonderful relationship. One of the things I was
12:26
Speaker 2: accused of is when we bring in a new home
12:29
Speaker 2: worker my wife thought we were having an affair, of course,
12:31
Speaker 2: and in six months I fired six of them because
12:35
Speaker 2: of that issue.
12:35
Speaker 1: It sounds familiar. I think that's a common issue, right,
12:39
Speaker 1: I mean, you can only do so much. Where did
12:41
Speaker 1: you draw the line between guilts and living your life?
12:44
Speaker 1: I know that was something I often struggled with too. Well.
12:48
Speaker 2: Here's why I struggled specifically, where friends would call up
12:51
Speaker 2: and say let's go have a lunch or come out
12:52
Speaker 2: for a drink or a coffee. When the home health
12:54
Speaker 2: aid was here and I was comfortable with her taking
12:56
Speaker 2: care of my wife, and I did it a few times.
12:58
Speaker 2: But I mean, you know that, Jim, you're still at home.
13:01
Speaker 2: You know, your mind's at home. Even though you might
13:03
Speaker 2: be out with a friend and having a nice meal
13:05
Speaker 2: or something, your mind is still at home. So I
13:08
Speaker 2: did that for a while, but I just realized that
13:10
Speaker 2: I needed to be home. I don't think she needed me,
13:13
Speaker 2: but I was much more comfortable being home with her
13:16
Speaker 2: all the time.
13:16
Speaker 1: Again, you know, we're able to maintain any semblance of normalcy.
13:21
Speaker 1: But I guess it's a new normal.
13:23
Speaker 2: Yeah, it is. We went from a life of activities
13:26
Speaker 2: and avid social life and going to dinners and such
13:29
Speaker 2: to being sequestered at home. I ended up about two
13:33
Speaker 2: years ago stepping away from work because I could no
13:36
Speaker 2: longer depend on my schedule to offer a deadline to
13:40
Speaker 2: a company or to a client they needed something by
13:42
Speaker 2: exitate and time. And I have these health emergencies which
13:46
Speaker 2: were plenty. I mean I talk about my wife calling
13:48
Speaker 2: nine to one one. I actually had to call nine
13:50
Speaker 2: to one one for medical emergencies a half a dozen times.
13:53
Speaker 2: And then of course just a cognitive outbursts that were
13:56
Speaker 2: unpredictable that would occupy my time. So I just realized
14:00
Speaker 2: I can no longer use this as an excuse, and
14:03
Speaker 2: so I thought, well, just I'll step away from work
14:05
Speaker 2: for a while. And as her health progressed, I realized
14:08
Speaker 2: that we were nearing the end. So it really wasn't
14:10
Speaker 2: a choice. At some point, I will go back while
14:13
Speaker 2: she's still alive.
14:14
Speaker 1: John, It okay? So as you grieve, how and maybe
14:18
Speaker 1: this started beforehand, because I know it did for me?
14:21
Speaker 1: How is lost reshaping your mission? How does this impact
14:25
Speaker 1: where you go from here?
14:26
Speaker 2: Well, it has actually impacted me. Two years ago I
14:29
Speaker 2: started my own podcast on caregiving. That exposure brought an
14:33
Speaker 2: offer from a Rare disease publication over the UK Rare
14:37
Speaker 2: Revolution to write a monthly column by Osmosis. I've taken
14:41
Speaker 2: on this persona and profile as a caregiver. I'm no
14:44
Speaker 2: longer day to day caring for anybody, but it's still
14:47
Speaker 2: obviously in my heart, much like I'm sure it is
14:49
Speaker 2: with you. So it's something that I think is important.
14:53
Speaker 2: I think the messages that people like myself communicate to
14:57
Speaker 2: people are needed, particularly when there's so little attention and
15:01
Speaker 2: support of caregivers and our culture. So that is where
15:04
Speaker 2: I'm going with this professionally. And you talk about guilt,
15:07
Speaker 2: It's like, Okay, well I wouldn't be here unless I
15:10
Speaker 2: was caring for my wife, and so now I'm in
15:12
Speaker 2: a position to kind of make a career shift and
15:16
Speaker 2: be a professional caregiver. But certainly there will be opportunities
15:19
Speaker 2: to monetize that experience through speaking engagements and things like that.
15:23
Speaker 2: So I'm wrestling with the guilt around that right now,
15:26
Speaker 2: actually something I talk to my therapist about. But again,
15:29
Speaker 2: I think I'm able to override that just because I
15:31
Speaker 2: think of what I am providing, the messages that I'm
15:34
Speaker 2: communicating to people, and I get feedback. I'm sure you
15:36
Speaker 2: get feedback from your podcast. I'm getting feedback from people
15:39
Speaker 2: who read my column or listen to our podcasts and
15:41
Speaker 2: actually want to be on it or say how valuable
15:45
Speaker 2: it is to them. So I'm hoping that I can
15:47
Speaker 2: continue on with this, and I hope I can find
15:50
Speaker 2: those places where it will be impactful for people.
15:54
Speaker 1: Well, you know, when did you realize building support for
15:57
Speaker 1: caregiving needed to be bigger than your story? At what
16:00
Speaker 1: point did that dawn on you?
16:02
Speaker 2: I think when I started speaking to other caregivers because
16:05
Speaker 2: I was just this lone voice in the universe. And
16:07
Speaker 2: then you know, I met Jason Rizendez who was on
16:09
Speaker 2: one of my podcasts, who heads up the National Lines
16:11
Speaker 2: for caregiving, and I meet in some of the podcasts
16:13
Speaker 2: I've done with that, researchers like from John Hopkins and
16:16
Speaker 2: Dana Farber with caregiving is you know, even though they
16:19
Speaker 2: are clinicians, caregiving is on their mind. They're developing programs
16:22
Speaker 2: and treatment protocols and trial protocols a little bit with
16:26
Speaker 2: the caregiver mind. So I realized it's out there.
16:28
Speaker 1: Do you think there are disease areas that have better
16:31
Speaker 1: advocacy and support for caregiving than others.
16:34
Speaker 2: I think oncology has always led the way with patient
16:37
Speaker 2: advocacy and by association caregiving. I see a lot of
16:40
Speaker 2: that now also taking place in rare diseases. Obviously, the
16:44
Speaker 2: need there is so acute to the resources are so
16:46
Speaker 2: limited that families and parents of children especially are taking
16:50
Speaker 2: it upon themselves to I mean, I look at John
16:53
Speaker 2: Crowley and his wonderful story of how he supported his
16:56
Speaker 2: family without any knowledge in this industgraming. One of the
16:59
Speaker 2: things that I thought about as I was prepping for
17:01
Speaker 2: our conversationship is you and I had the advantage when
17:03
Speaker 2: we were caring for our wives. We had knowledge of
17:06
Speaker 2: an industry. We knew the language, you know. Imagine John
17:09
Speaker 2: Crowley freshly meant an MBA and he's confronted with these
17:12
Speaker 2: horrible illnesses for his children. That's what happens to a
17:15
Speaker 2: lot of parents nowadays, particularly in rare diseases. They have
17:18
Speaker 2: no background in our field and they're at a loss.
17:20
Speaker 2: And so I think the notion of advocating and caregiver
17:24
Speaker 2: was supporting that as becoming much more important and much
17:27
Speaker 2: more prevalent around rare diseases. But again I think cancer
17:30
Speaker 2: certainly continues to lead the way. I mean, I look
17:32
Speaker 2: Kathy just and what she did with the MMR thirty
17:35
Speaker 2: years ago. There's an area where the actually the therapies
17:38
Speaker 2: changed for the better because of the influence.
17:41
Speaker 1: Right now, I've had Kathy on the podcast and we
17:43
Speaker 1: stay in close touch, and she gets it, and then
17:45
Speaker 1: you know she has gone through her second round of
17:48
Speaker 1: her own in cancer. So I mean definitely seems to
17:52
Speaker 1: get where that's coming from. I didn't know if you
17:55
Speaker 1: had somebody. I didn't even know there was an advocacy
17:58
Speaker 1: group for caregiving. I didn't know that was something that
18:02
Speaker 1: even existed. It seems like it's something companies could take
18:06
Speaker 1: up more. We talk about things like adherence to medicine
18:09
Speaker 1: and things like that, but caregivers are critical to that. Absolutely,
18:13
Speaker 1: do metrics matter when it comes to caregiving and what
18:16
Speaker 1: should companies be tracking in and around this area?
18:20
Speaker 2: I do think they matter, But I also want to
18:22
Speaker 2: just take a step back. But I mean, we are
18:23
Speaker 2: an industry that is known now as being patient centric.
18:27
Speaker 2: To me, as a caregiver, having gone through this incredible
18:30
Speaker 2: experience in my life, there's nobody closer to the patient.
18:33
Speaker 2: You already talked to the patient. The information that we
18:35
Speaker 2: as caregivers and patients can communicate to drug developers is
18:39
Speaker 2: critical as they develop new medicines and as they go
18:42
Speaker 2: through clinical studies and treating patients. But at the same
18:45
Speaker 2: time to raise awareness of the importance and the role
18:48
Speaker 2: the caregiver has. I think we can no longer just
18:51
Speaker 2: say we are caregivers and sort of be put up
18:54
Speaker 2: on pedestals by a lot of people just because the
18:56
Speaker 2: sacrifices we make. I think they need to understand what
18:59
Speaker 2: you actually went through on a day, gim with your wife.
19:02
Speaker 2: The number of times I lifted my wife off the toilet,
19:05
Speaker 2: or the number of the times I had to help
19:07
Speaker 2: her eat. Those numbers people can understand the vague notion
19:11
Speaker 2: of being a caregiver. It's nice, and people understand it.
19:14
Speaker 2: I think they're making it a part of the culture,
19:16
Speaker 2: but I think without the numbers and the realization of
19:19
Speaker 2: what that actually looks.
19:20
Speaker 1: Like, some caregivers are kids, right, because I have to
19:23
Speaker 1: take care of an aging parent aer an ill parent.
19:26
Speaker 1: Then the question is it can all fall on employers.
19:29
Speaker 1: How much responsibility should the government and hoalth systems take
19:33
Speaker 1: to support caregiving.
19:34
Speaker 2: Well, I think they can start doing a little bit more,
19:36
Speaker 2: because that'll mean that they're doing a lot. The areas
19:39
Speaker 2: of burden on caregivers certainly, financial services, some of the
19:42
Speaker 2: things in the workplace, clearly, I know that's something you,
19:45
Speaker 2: as as a business owner, are very familiar with. You know,
19:47
Speaker 2: how are companies supporting their employees because one out of
19:51
Speaker 2: four or five people working inside a workplace have another
19:54
Speaker 2: at least part time job, if not another full time
19:56
Speaker 2: job as a family caregiver, and they have to be
19:59
Speaker 2: comfortable sharing that knowledge with an employer because at some
20:02
Speaker 2: point the employer has to make productivity decisions on workers
20:06
Speaker 2: and whether or not they're meeting the standards in order
20:08
Speaker 2: for the business to stay in business. At the same time,
20:11
Speaker 2: I think employers need to have a greater awareness of
20:14
Speaker 2: what that life as a caregiver looks like and the
20:16
Speaker 2: sensitivity is around that so they can help support because
20:19
Speaker 2: if they don't support, then the employees who are caregivers
20:22
Speaker 2: will leave the company and the nutrition rate I would
20:24
Speaker 2: imagine would be significant.
20:26
Speaker 1: You know, I just joined the advisory board of Private
20:29
Speaker 1: Health Management and that organization is focused on complex cases
20:34
Speaker 1: and helping caregivers navigate that companies and services are trying
20:39
Speaker 1: to make that more mainstream and help with productivity and capabilities,
20:44
Speaker 1: especially the less dextrous people relative to our business. For
20:49
Speaker 1: the people who don't get it, you know, you need
20:52
Speaker 1: that sharpa prove your analogy, you know, otherwise you're really
20:56
Speaker 1: you're sort of fumbling around in the dark.
20:58
Speaker 2: We did a podcast Bob Cofflin, I'm my co hosts.
21:00
Speaker 2: We take them on the road and bring them inside
21:02
Speaker 2: companies and record live in front of a live town
21:05
Speaker 2: hall employee audience. And I can remember when we did
21:08
Speaker 2: want and this was the rare disease franchise over there,
21:10
Speaker 2: and their senior vice president was the host. And after
21:14
Speaker 2: the recording came up to me, because what I always
21:17
Speaker 2: do when I go into the companies, I asked for
21:18
Speaker 2: a show of hands, how many caregivers are in the
21:21
Speaker 2: audience and those who were comfortable and usually works out
21:23
Speaker 2: to be about twenty twenty five percent. And it was
21:25
Speaker 2: something that he didn't have an awareness of. And I
21:27
Speaker 2: think there's probably a lot of company leaders executives who
21:31
Speaker 2: probably have similar either misinformation or no information at all.
21:34
Speaker 2: So I think it's an opportunity for companies at the
21:37
Speaker 2: very least to maybe form a little internal much like
21:40
Speaker 2: we did with patient groups inside drug developers, you know,
21:43
Speaker 2: those advisory So that is certainly an issue that I
21:47
Speaker 2: think will continue to gain traction in the next few years.
21:52
Speaker 2: I think just because I think there are so many
21:54
Speaker 2: caregivers now, and certainly people want to hold onto their job,
21:57
Speaker 2: but at the same time they had these allegiances to
21:59
Speaker 2: their family and loved ones. I mean that that's something
22:02
Speaker 2: that I can't stop doing so they be comfortable in
22:04
Speaker 2: the workplace. In order to accommodate that.
22:06
Speaker 1: We're going to have care giving robots. Speaking of that,
22:09
Speaker 1: and AI help all of this. Doctor Google's already gotten
22:12
Speaker 1: better in the era of AI in terms of how
22:15
Speaker 1: things are organized and what you're told. I'm just wondering,
22:19
Speaker 1: does that fill some gaps and voids and knowledge?
22:23
Speaker 2: I hope so. I mean I look at AI not
22:25
Speaker 2: with the fear and dread that so many do, I
22:27
Speaker 2: think in our society who don't have an understanding. I
22:29
Speaker 2: look at it as the capability to really help in
22:31
Speaker 2: this area. You know, what are some of the sources
22:33
Speaker 2: that are really acutely important to caregivers. Can we match
22:37
Speaker 2: those with the abilities and capabilities of companies who can
22:40
Speaker 2: help provide that. That is where government can really play
22:44
Speaker 2: a big role.
22:45
Speaker 1: Well, I know in the cancer space, the American Cancer
22:47
Speaker 1: Society has support programs. Patrick Dempsey Center is designed to
22:51
Speaker 1: help support families. There's Family Reach, which I've had all
22:55
Speaker 1: these people on the podcast to talk about support services.
22:59
Speaker 1: I imagine few of the bigger areas. Did you ever
23:02
Speaker 1: work with the Parkinson's Disease advocacy group at any point?
23:07
Speaker 2: I worked with the Michael Fox Foundation on a few kids,
23:09
Speaker 2: around some events and around some fundraising. They do a
23:13
Speaker 2: wonderful job, really do. I mean, they probably are the
23:15
Speaker 2: predominant advocacy group. But again, through my work, I was
23:18
Speaker 2: very very familiar with all the cancer particularly the MMRF
23:22
Speaker 2: with my exposure to my aloma through work, and I
23:24
Speaker 2: look at what Kathy was doing at the MMRF and
23:27
Speaker 2: what the Fox Organization is doing, and how those two
23:30
Speaker 2: groups have really influenced some of the smaller foundations because
23:35
Speaker 2: you know, years ago they were running themselves like nonprofits.
23:38
Speaker 2: Now they're all running themselves like publican trade or Wall
23:40
Speaker 2: Street companies because they have to. You know, we're all
23:43
Speaker 2: buying for the same dollars in a smaller and diminishing
23:46
Speaker 2: pot and so they have to be very business savvy,
23:48
Speaker 2: and I think you see that in some of the
23:50
Speaker 2: people that are attracting to lead those foundations.
23:52
Speaker 1: Nowadays, i've seen not being on the board of several
23:55
Speaker 1: of them. That's changing. So you mentioned there's a financial
23:58
Speaker 1: cost of caregiving, that's all you also lose time? Are
24:02
Speaker 1: there other costs for caregivers that people just don't get?
24:05
Speaker 2: I don't know how you help this because I think
24:08
Speaker 2: it's just part of being a caregiver, you know, that
24:10
Speaker 2: emotional strain. What can we do as a society Again,
24:13
Speaker 2: I don't know if it's a place for government to
24:15
Speaker 2: help me with my work through my emotions. But caregiver
24:18
Speaker 2: burnout is not unknown as part of the existence. Whether
24:23
Speaker 2: you are in it for eighteen years like I was,
24:25
Speaker 2: or six months, you're going to reach a point where
24:28
Speaker 2: your emotions are going to be stretched pretty thin. You know,
24:31
Speaker 2: maybe some things around respite care where you know, you
24:34
Speaker 2: do have respite care programs, but if they can become
24:37
Speaker 2: a little bit more affordable or readily available to people. Again,
24:40
Speaker 2: I'm not sure if emotions are something that we can
24:43
Speaker 2: in fact help out, just because I think it's something
24:46
Speaker 2: everybody will go through.
24:47
Speaker 1: Well, there's now the calm app and there's apps for that.
24:50
Speaker 1: I had interviewed someone about meditation. There's probably practices that
24:55
Speaker 1: could help, and I went and sought those out. I mean,
24:58
Speaker 1: I think working out, getting out in ure when I
25:00
Speaker 1: would go out to walk around, and then music, getting
25:04
Speaker 1: out and listening to music, and being in the community,
25:07
Speaker 1: even going to my synagogue and listening to music there
25:10
Speaker 1: and having some religion and some faith. All of that
25:13
Speaker 1: was pretty cool as it helped us get through some
25:16
Speaker 1: of the tougher shoots. Let's go back to the music.
25:19
Speaker 1: I'm obsessed. But this year you're visiting eight regional opera houses.
25:24
Speaker 1: Is that right for You've made it a butterfly season.
25:26
Speaker 1: Let's hear about it and how it ties to the mission.
25:29
Speaker 2: Opera was something I was introduced to as a graduate student.
25:32
Speaker 2: I was a teaching assistant for a professor who loved opera,
25:36
Speaker 2: and if you were his fall ta, he would drag
25:39
Speaker 2: you to the Boston Opera Company performance, whether you wanted
25:41
Speaker 2: to or not. And so he took me, and I
25:43
Speaker 2: had no background in that kind of music, and I
25:46
Speaker 2: went and I heard these voices, Jim and you've heard
25:49
Speaker 2: Renee Fleming so you could appreciate it was a beautiful
25:52
Speaker 2: opera and I got hooked. And that was forty years ago.
25:54
Speaker 2: When I got married to my wife. I introduced her
25:56
Speaker 2: to opera.
25:57
Speaker 1: She loved the.
25:58
Speaker 2: Music, but the experience was a woman who spoke Mandarin
26:01
Speaker 2: is the first language. Going to performance that was sung
26:03
Speaker 2: in Italian with English subtitles running across the top of
26:06
Speaker 2: the stage. She didn't know where to look or listen,
26:09
Speaker 2: so she said, well, that's your thing, you know. I
26:11
Speaker 2: played the music all the time around the house. It
26:13
Speaker 2: was Madame Butterfly that she went to sonyhow Butterflies I
26:15
Speaker 2: always had a significant part of my life, and as
26:18
Speaker 2: I was thinking about things to do without my wife,
26:22
Speaker 2: I don't know where or how I came up with
26:24
Speaker 2: this idea. I went to Chad Gpt and is how
26:26
Speaker 2: many companies are doing Madame Butterfly in twenty twenty six,
26:30
Speaker 2: and it came up with eight regional companies, And I thought,
26:33
Speaker 2: you know what, maybe this is a way for me
26:35
Speaker 2: to process my grief, revisit my love for my wife,
26:39
Speaker 2: acknowledge the loss in my life, but at the same
26:41
Speaker 2: time moving ahead. In fact, next Thursday, I fly into
26:44
Speaker 2: Raleigh Durham to hear Madame Butterfly performed by the North
26:47
Speaker 2: Carolina Opera, and that's followed up by New York, the
26:50
Speaker 2: Metropolitan Opera, Chicago, Denver, Baltimore, Santa Fe, oh Upstate New York.
26:56
Speaker 2: They have a music festival in July called Glimmerglass, which
26:59
Speaker 2: is by Cooperstown, and I'm visiting eight cities and I
27:02
Speaker 2: will listen to the opera. It's not going to be
27:04
Speaker 2: much about it. I'm not going to write eight critiques
27:06
Speaker 2: of eight performances. But I'm hoping as I go into
27:09
Speaker 2: these cities, also gather a group of three or four
27:13
Speaker 2: caregivers and we can have these little roundtable discussions and
27:15
Speaker 2: hear about their stories that would become part of the narrative.
27:18
Speaker 2: I'm gonna be updating my social media presence and I'll
27:21
Speaker 2: be chronicling this as I go along and may turn
27:24
Speaker 2: into a book. I'm not sure, but I'm calling a
27:26
Speaker 2: Butterfly season.
27:27
Speaker 1: That's terrific. I mean, that's such a great I mean, look,
27:29
Speaker 1: it's why I auder was on Patrick Dempsey's board and
27:32
Speaker 1: we went up and dedicated the Healing Guard and then
27:35
Speaker 1: we'll get involved in his annual challenge he raise money
27:39
Speaker 1: for that, and then so many other things that I've
27:42
Speaker 1: taken up that carry on her memory positively but also
27:46
Speaker 1: helped me heal and me cope with what happens. But
27:50
Speaker 1: it sounds like you're doing the same kind of thing.
27:52
Speaker 1: I mean, that's a courageous, positive way to channel all this.
27:57
Speaker 2: Everybody's saying, don't do anything rash. So I'm centering in
28:00
Speaker 2: on those things that she and I did together. Whereas
28:03
Speaker 2: it's familiar, it's safe, I know what I'm doing there,
28:06
Speaker 2: and I'll just be do doing them on my own.
28:08
Speaker 2: But with her memory.
28:09
Speaker 1: Here's one of the things that one of the questions
28:12
Speaker 1: I wake up Boston contemplating is sort of why and
28:15
Speaker 1: not why me? Or I don't know how you feel
28:19
Speaker 1: about it, but it's not why me, but why did
28:22
Speaker 1: this happen? And there has to be a reason. There
28:24
Speaker 1: has to be a higher reason because it's too strange.
28:27
Speaker 1: I mean, we couldn't diagnose this thing when we did
28:30
Speaker 1: find out about it. It was super rare cancer that
28:33
Speaker 1: it was hard to treat, didn't have a lot of
28:35
Speaker 1: clinical trials, and we didn't have a lot of proof
28:37
Speaker 1: points where you were navigating and flying blind to a
28:41
Speaker 1: large extent relative to say, breast cancer or any number
28:45
Speaker 1: of other cancers that have a clear protocol and a
28:48
Speaker 1: survival curve and all the things that. But you know,
28:51
Speaker 1: small ballot cancer you couldn't say, well, it's colon or
28:54
Speaker 1: it's this because we couldn't even find it with traditional
28:59
Speaker 1: diagnostic It's because it was sitting on the outside of
29:02
Speaker 1: her stomach. And the junal reason Regiona first, I mean,
29:06
Speaker 1: who could even call it, you know, was insane. It
29:09
Speaker 1: wasn't a pancre. You know, we thought it was pancreas
29:11
Speaker 1: it was close to there but not touching it. And
29:13
Speaker 1: that was clear by all the surgeries we had to
29:16
Speaker 1: you know, we ended up having to do treatment for
29:19
Speaker 1: a ballel obstruction. But what happened there was we fixed
29:22
Speaker 1: it and it gave her the opportunity to get chemo
29:24
Speaker 1: that worked and she had a great year of quality
29:27
Speaker 1: of life that went great, and then that cancer catches
29:30
Speaker 1: up again starts to run ahead. As you know, so
29:33
Speaker 1: I often I don't know if you have the same
29:35
Speaker 1: experience the why. We've got some purpose and we're meant
29:40
Speaker 1: to be with who's next or what's next, and you're
29:43
Speaker 1: not quite there yet. I feel like, this is something
29:46
Speaker 1: that happens after you do some of these things that
29:49
Speaker 1: you're doing. So when you said when I went on
29:52
Speaker 1: my run all over the world and I think it
29:54
Speaker 1: was necessary to do, I think you need to know
29:57
Speaker 1: you can survive in the wild again because you're not
30:01
Speaker 1: with your person they survived with even though you went
30:05
Speaker 1: what ten good years? I mean, fine, she was pretty
30:08
Speaker 1: good for eight nine years, but you really went ten
30:11
Speaker 1: years here with this and the last three were pretty intense, right, perfect.
30:16
Speaker 2: Yeah. My initial reaction to her passing away was I
30:20
Speaker 2: was so angry because I didn't have an answer to that,
30:23
Speaker 2: because that was the question I asked myself all the time.
30:25
Speaker 2: Here's a woman and a person who did nothing wrong.
30:28
Speaker 1: In life, right, I see the same.
30:31
Speaker 2: She was kind, she was intelligent, she never heard a fly,
30:35
Speaker 2: and yet not only did she live a life that
30:38
Speaker 2: was sure than normal, but it was so as I said, punishing,
30:43
Speaker 2: Why are these bad things happen to good people? And
30:45
Speaker 2: I still don't know. I still don't know.
30:48
Speaker 1: Yeah, I hear you, yeah, And there may not be
30:50
Speaker 1: an answer. I just think I don't know if you've
30:52
Speaker 1: embraced this. But she had a shaman and we came
30:55
Speaker 1: to the shaman by accident, because the shaman was our tailor.
31:00
Speaker 1: Tailored Audra's close and when they were talking one time,
31:03
Speaker 1: she said, oh, I do this too, and she's like,
31:05
Speaker 1: I can read you, and then she started to do that.
31:09
Speaker 1: And I think when I went to see the shaman,
31:11
Speaker 1: and I posted about this when I finally went after
31:14
Speaker 1: Audred dieda a little, I had to get some clothes tailored,
31:17
Speaker 1: so that was the main reason. And I didn't even
31:19
Speaker 1: plan to have her read me. I mean, it wasn't
31:22
Speaker 1: a dramatic experience, but I walked outside. I never look up,
31:26
Speaker 1: I never look up, and I looked up and there
31:28
Speaker 1: were two cloud formations and the sun in the middle,
31:31
Speaker 1: as if an angel were up in the sky. And
31:34
Speaker 1: I was compelled to take the picture. And it just
31:37
Speaker 1: created this new idea for me, which is, this is
31:42
Speaker 1: the path, this is where it's going, and I have
31:44
Speaker 1: to follow it. You know, I think you fight it.
31:47
Speaker 1: And that was six or seven months in, and you know,
31:49
Speaker 1: I think you definitely fight what's happened. There's just something
31:53
Speaker 1: in us that does that and can't accept the reality
31:56
Speaker 1: of it. And then once you do, other things open up.
31:59
Speaker 1: Doesn't make it easier to not have your person. It
32:02
Speaker 1: doesn't I.
32:02
Speaker 2: Still wear that right, No, that will never go away.
32:05
Speaker 1: No, well listen, so wait, I don't let you off
32:08
Speaker 1: the hook. I always ask three questions at the end.
32:11
Speaker 1: I like to just ask this one, and maybe it'll
32:14
Speaker 1: be interesting to hear your answer on this one given
32:16
Speaker 1: your experience. What's the best vacation you've ever taken.
32:20
Speaker 2: After I got married, I'd never been. I've been to
32:23
Speaker 2: Europe a few times, but never Asia. And of course
32:26
Speaker 2: my wife was born in Shanghai, and we went our
32:29
Speaker 2: first trip to China, and I mean it was the
32:32
Speaker 2: summertime because we had we were tied to school vacations
32:34
Speaker 2: the only time we could travel. And of course it's
32:36
Speaker 2: the worst time to visit Asia because you wake up
32:38
Speaker 2: in the morning and it's ninety five degrees. But Shanghai
32:41
Speaker 2: is twenty five million people and it's so modern, it's
32:44
Speaker 2: just amazing. So it's it's my favorite. And we went
32:47
Speaker 2: back many many times afterwards to visit, and of course
32:50
Speaker 2: we had stopping off points to Japan and to Vietnam
32:53
Speaker 2: and to Singapore, but China is my all time favorite
32:56
Speaker 2: place to vacation.
32:58
Speaker 1: Awesome. What album is this sound track of your life.
33:01
Speaker 1: If there's an album it could.
33:02
Speaker 2: Be, it could be two. Certainly Madame Butterfly Importance we
33:06
Speaker 2: already talked about. But I think the title and plus
33:09
Speaker 2: is that it's a wonderful album. Who's Next from the Who?
33:11
Speaker 1: Wow? Cool? I just saw them. I thought it was fantastic.
33:14
Speaker 1: Well you did? What do you? What are you?
33:16
Speaker 2: What are your albums? What's the soundtrack of your life?
33:18
Speaker 1: That one's really boomerang this back on me. You know
33:21
Speaker 1: it's Steely Dan's asia. I think it's evolved. I know
33:25
Speaker 1: people know I'm into The Grateful Dead. They're more of
33:28
Speaker 1: a concert band, whereas Steely Dan is an album band.
33:32
Speaker 1: And I always say that one from being a kid
33:36
Speaker 1: through my adulthood has been with me the whole time.
33:39
Speaker 2: I'm not surprised because Steely Dan, to me, it was
33:42
Speaker 2: an acquired taste and it's niche listeners. And that's you
33:46
Speaker 2: to a t you always find the niche.
33:49
Speaker 1: I find the niche and then blow it out. And
33:51
Speaker 1: what's something you're learning to get real honest about greeting that.
33:55
Speaker 2: It's a it's a full time job and it never
33:57
Speaker 2: goes away. It's not a destination.
33:59
Speaker 1: No, no, it's an existence. But I think it's a
34:03
Speaker 1: misunderstood word. I think a lot of people think grieving
34:07
Speaker 1: means something somewhat passive or not, sort of giving up
34:12
Speaker 1: and hanging it up. It's quite the opposite. It's an
34:15
Speaker 1: experience that can be uplifting ultimately and forward movement. I
34:20
Speaker 1: think we just had that conversation, and I think grieving
34:23
Speaker 1: doesn't have to be defined by some sort of half
34:27
Speaker 1: glass empty. The idea is, how does grieving become half glassful?
34:32
Speaker 2: When I think of grief, I think of any number
34:34
Speaker 2: of things, and certainly it's a lifelong experience, but there
34:37
Speaker 2: is this sweetness to it. Maybe people don't understand that,
34:40
Speaker 2: because if you're grieving, you're connected to the person who
34:43
Speaker 2: is so important to you that you're feeling these feelings.
34:47
Speaker 2: So I don't ever want to give that up.
34:49
Speaker 1: Great, we'll drop the mic there. That was really fun.
34:53
Speaker 1: Thanks all, look forward to working with the other ways.
34:56
Speaker 2: Thank you, Jim. Wonderful to connect.
34:58
Speaker 1: Take care, take care. Hey everyone, thanks for joining me
35:03
Speaker 1: on the Get Real podcast. You know, I hope you
35:06
Speaker 1: feel a little healthier hanging out with me. You know,
35:08
Speaker 1: it's gonna be a lot of fun. Passing this along
35:11
Speaker 1: to others. Please subscribe below, Please share. I'm excited not
35:16
Speaker 1: just to talk about healthcare, but a lot of other
35:19
Speaker 1: fun topics. It's about making healthy Talk about healthcare is
35:24
Speaker 1: not a lecture. This is supposed to be fun and
35:27
Speaker 1: look forward to spending more time with you in the future.