Latest / Uncomfortable Conversations with Josh Szeps / JUST JOSH: Having a Dad with Alzheimer's

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JUST JOSH: Having a Dad with Alzheimer's · Uncomfortable Conversations with Josh Szeps

• 0:00
  Okay, humans welcome to the safe space for dangerous ideas and there's no idea more dangerous
• 0:07
  than death, grief and loss and what it might teach us about who we are and what it takes
• 0:14
  to be a good person.
• 0:17
  One of the most important people in my professional life who became one of the most important people
• 0:22
  in my personal life as well died last night, Judith Willem.
• 0:28
  I was driving the kids to school this morning and telling them about how much she meant to me and
• 0:35
  my daughter who's six as I started blubbering and crying said why are you crying about her but you
• 0:43
  never cry about pop. Pop meaning my own father who while still alive is in severe stages of
• 0:52
  Alzheimer's disease and a dementia ward at a nursing home and I thought that was a really
• 0:58
  interesting question and maybe an opportunity for us to reflect in constructive ways about
• 1:03
  what how we grieve tells us about what we value in life. Judith Willem was one of the most
• 1:13
  interested and interesting people I've ever known. If you don't know her name you certainly
• 1:19
  know her impact because I wouldn't be doing what I'm doing if it weren't for her. I literally
• 1:24
  quite logistically would not physically be in Australia necessarily were it not for her having
• 1:30
  noticed something in me when I was still living in New York City that she thought could benefit
• 1:35
  the public broadcaster. Others may have disagreed certainly this was not a unanimous point
• 1:41
  but of course she was the most perspicacious one she was the one with the on the right side of
• 1:44
  history or perhaps given the way history unfolded the wrong side in hindsight but she was trying to
• 1:50
  do something interesting at the public broadcaster she was trying to make it a nimble and brave place.
• 2:00
  When I say she brought me to Australia she literally was in charge of the radio division
• 2:05
  and several other components of the ABC in 2017 and she was aware of the fact that I'd done a
• 2:13
  little bit of radio before in the States and also in Australia and that I had spent over a decade
• 2:21
  working in broadcasting in New York City already and she did what at the time seemed like an
• 2:27
  impossible thing which I don't believe has been done before with any quote unquote talent which
• 2:32
  was she basically put me in a holding deal which is entertainment industry jargon for when you
• 2:38
  know that you're going to want to use someone in the future but you're not quite sure what to do
• 2:41
  with them now so you pay them a bit too much money not to go somewhere else she wanted to make it
• 2:45
  viable for me and my partner and the kids to move to Australia so she got three different departments
• 2:53
  to chip in a bit of money each one was podcasting she gave me weekly podcast one was radio national
• 2:59
  she gave me a weekly panel show and one was ABC radio where she basically put me on this holding
• 3:05
  deal where I would fill in for the big presenters the big hosts while they were away which they
• 3:11
  can be away quite a lot in radio so there would be four or five months of the year where I would be
• 3:15
  jumping between either the breakfast show in the early mornings or the drive show or wherever
• 3:20
  I might be needed and that was something that the public broadcaster frowned upon the cardigan
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  wearing powers that be thought that that was a little bit of a frivolous expenditure but what
• 3:30
  Judith understood that they didn't was that there isn't really a price you can pay on the future
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  of the public broadcaster as a place that sounds like it is speaking to all Australians not in some
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  superficial diversity metric way but in a way that resonates with people who don't necessarily
• 3:47
  agree with you and if you're listening to this podcast and if you're a fan of this podcast and
• 3:50
  a fan of mine you know that my overarching mission in life is to speak to people who disagree with
• 3:56
  in ways that will sound comprehensible and that will sound generous towards their point of view
• 4:02
  Judith saw that Judith saw a lot she went on to persuade the man who founded the the breakfast
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  television show the morning television show on ABC TV to give me a shot at co-anchoring the weekend
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  television news so for a while there I was doing five days a week on weekdays of radio of a
• 4:26
  three hour radio show from six to nine in the morning and then on the weekends going into the
• 4:31
  television studios and co-anchoring the morning show on the public broadcaster it was a lot of work
• 4:36
  it was incredibly exciting because I was an independent contractor I was allowed to get around
• 4:41
  an ordinary labor rules that would have prohibited working seven hours a week but I was my own
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  thing I wasn't technically an employee and she fought for me Judith fought for me every step of the
• 4:52
  way against people who valued hierarchy more than innovation against people who valued bureaucracy
• 5:03
  more than nimbleness against people who valued speaking in a way that is very comfortable and
• 5:10
  comforting to our preconceptions and our biases that Molly coddles the audience over a way of
• 5:17
  speaking that actually challenges the audience Judith had been struggling with breast cancer
• 5:24
  for as long as I knew her but struggling is the wrong word she took it in her stride she always
• 5:28
  had a sunny disposition I thought it was in remission I knew there were ongoing treatments there was
• 5:35
  a little bit of chemo here a bit of chemo there and just a few weeks ago she and I were texting
• 5:40
  about how we would catch up and get a coffee in Balmain where she lived the suburb of Sydney in
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  which I coincidentally happened to have been born and raised and she texted me back a few days
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  beforehand saying look this latest round of chemo has me feeling a little bit crooked a bit slow I'm
• 5:56
  afraid can we rain check and that was the last that I heard from her until I saw the news this
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  morning that she died last night she went into bat for people she believed in in an incredible way
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  she didn't grow up at the ABC she can actually through the Fairfax press which owns the Sydney
• 6:21
  morning herald and she was at one stage an editor of Good Weekend magazine which is the the
• 6:27
  Weekend magazine of Australia's Sydney's number one broadsheet newspaper and she was so sparkly
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  and innovative and she knew what audiences wanted and she knew how to spot potential talent
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  and so there was a big snafu a few years ago when she basically brought me back to Australia on
• 6:46
  this holding deal in order to line me up to host one of the big radio shows on ABC Radio Sydney
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  either the breakfast show six to nine in the morning or the drive show which is roughly three to six
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  in the afternoon and when one of those slots became available there was an internal power struggle
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  between at this stage she had been promoted to a director status at the ABC and there was an
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  internal power struggle between her and her underlings there was a sort of an insurgency from some of
• 7:14
  the underlings who were the types of people who valued Sydney already and hierarchy
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  who said that there was another person who should take that job who should who basically had been
• 7:25
  waiting around for longer than me she knew that that wouldn't work she knew that that person
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  wasn't right for that shift you know personalities are very different it depends on your style whether
• 7:35
  or not you're going to work at a particular time of day they wanted to park me in the afternoon slot
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  which is you know twelve thirty to three thirty in the afternoon the kinds of ways that I talk about
• 7:45
  things which can be occasionally a survey can fast and quick-witted and snarky just come across as
• 7:51
  a bit sort of arrogant and hyper intellectual at one in the afternoon at seven a.m. they can work
• 7:57
  one in the afternoon not so much so I shoulder full responsibility for not having been able to make
• 8:02
  that show as brilliant as the person who did it before me was able to because he was able to weave
• 8:08
  incredible stories and whimsy out of the smallest facets of everyday life not necessarily my forte
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  but at the end of that whole experience when my time at the ABC was falling apart I remember calling
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  her from I was at oh here the airport in Chicago I was changing planes on my way back to Australia
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  and I called her and I said I'm not going to be at the ABC anymore and by this stage her illness was
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  sufficiently problematic at least in terms of her energy levels that she'd stepped back and she
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  was on sick leave and I remember her reaction because it was so full of fury at the powers that
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  be for having muddled and fumbled and dropped the opportunity that she thought she'd given them
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  in backing me time and time again and it was so full of love for me it was so full of love for
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  the values that we shared as journalists as communicators as broadcasters there was not an ounce of
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  of openness or regret she said oh that's nonsense they are bloody idiots she named people by
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  saying oh this person is such a think and she got sort of she started to ruminate on her decision
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  some years ago when there was this battle over the big show that ultimately didn't go to me
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  she started to ruminate about the fact that she had sort of taken the approach of look I'm
• 9:56
  senior management this is speaking in her voice now I'm senior management and part of my job is
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  sometimes to allow underlings to make the wrong decision and let them lie in the bed they made
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  and that was a decision that she came to regret as she said to me on the phone from Chicago airport
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  she said you make one bad decision Josh I said don't worry about it you don't have a hundred
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  percent knowledge at the time at which you're making these decisions because she was always
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  coming from this place of passion excitement possibility she was a person who always said yes
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  she was not a no person you know how there are cultures that just seem like yes cultures
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  and the cultures that seem like no cultures it's something that I felt when I first moved to
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  New York City that the whole city was a place of yes you know you'd come up with an idea for
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  something and you talk to someone at a party about it or at a bar and they'd be like oh that's great
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  you know maybe I could you know I know so and so you should get a coffee with and maybe you know
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  that I like look forward to seeing it you'd make the same proposition or talk about the same dream
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  in Australia and someone would say and someone tried that once you didn't go so well yeah
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  it's a culture of no in some ways instead of a culture of yes and she was inside an institution
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  that can sometimes frustratingly get itself tangled up in nose in process in bureaucracy what we
• 11:22
  don't do that here we don't do this thing here there's no money for it you know the ABC unfortunately
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  has suffered major budget cuts over the past couple of decades and so there is an ethos of like
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  we can't do that we don't do that there's no money for that and I would occasionally float ideas
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  for her when she was basically my boss's boss's boss and her response was always if it's a great idea
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  let's do it absolutely and I'd say but isn't there no money and she sort of looked at me and
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  scoured and said Josh there is always money just depends what you do with it I pitched her a show
• 11:53
  once as my dad was starting to get Alzheimer's and I'll come to my dad in a second but I just want
• 11:58
  to eulogize Judith properly first to pitch her a show which would be called are you there dad
• 12:04
  and would document the decline of my father into the fog of Alzheimer's probably as a radio show
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  maybe a six-part radio show released as a podcast and she looked at me and she said that's a great
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  idea and I said what should I do and she stared at me and said go and talk to your mom
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  she also gave me great personal advice when she knew that I was having kids she said
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  I've got one thing to say to you about having babies Josh don't be afraid of them
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  as long as they're warm as long as they're fed as long as they're
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  housed and clothed they will terrify you if they can but just regard the screaming as the
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  meaningless ejaculations of a little mammal don't be afraid of them don't let them scare you
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  you're the grown-up you know everything they know nothing
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  and let me tell you in some quiet moments of desperation when we had screaming three-month-old
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  twins that came in very handy she was a wise person she was a generous person she was a generous
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  person in the sharing of her wisdom and I'm going to miss her it's a real blow and it comes two
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  weeks after the death of another really important person to me which perhaps is why what motivated
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  me to put these thoughts down in this way which is who is Howard Feynman and Howard was I believe
• 13:36
  the news director of the Huffington Post when I came on to Huff Post live in New York and he
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  had previously been the editor of Newsweek he was a huge Washington journalist insider and he had
• 13:46
  every reason to have ears he had every reason to have an attitude of being better than me this
• 13:53
  kid from Sydney who knew nothing about the way that American politics or broadcasting worked and
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  he bounded onto that Huff Post live set the first time I interviewed him with such a cheeky
• 14:03
  vigor and such insightful wisdom and such a playfulness that he and I immediately hit it off I
• 14:09
  ended up going over to his place in Washington DC and meeting his wonderful wife and I
• 14:16
  just would get him on the show as much as I possibly could when I was on Huff Post live because
• 14:19
  he was both insightful and also a joyful person to listen to and watch and I emailed him last year
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  and he emailed back a one sentence reply saying Josh I'm currently battling pancreatic cancer
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  and so I called him and we spoke and we had one of those conversations where
• 14:39
  both of you know that it's the last time you'll probably speak and I told him how much I admire him
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  and what a what a powerful mentor he was to me and he told me all the nice things that would
• 14:56
  make me blush if I repeated them here and then we said goodbye and then two weeks ago I
• 15:02
  read that he was gone and the common theme I think between Judith and Howard
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  Howard was 75 Judith only 62 was the power of having someone believe in you especially if that
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  person is a stranger and especially especially if that person is willing to go out on a limb for
• 15:25
  no obvious reason to defend the things that you believe in and to defend you in the process
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  Judith made it possible for me to come from the United States to Australia she made it possible
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  for me to support my family she gave me a foot in the door at the ABC she got me the weekend
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  breakfast television show she fought for me in the battle over the breakfast show at ABC radio
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  which I'm now so grateful that I didn't win because it allows me to speak here instead of speaking
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  inside the echo chamber Judith and I both were at the ABC but not of the ABC
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  she represented its greatest traditions I think I represented its greatest traditions
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  there's just a battle for the heart and soul of public broadcasting at the moment and
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  the ABC will be in a great loss not having her vision her playfulness and her spirit of saying yes
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  you know there are executives who believe in seniority and process and punishing whistleblowers
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  and cow towing to internal insurrections there are in other words cowards
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  Judith was not a coward she was brave fierce wise loving when she said you make one bum decision
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  on the phone to me in Chicago I didn't realize then that that one bum decision was the best thing
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  that ever happened to me because here I am so meanwhile dad sits in a dementia ward at a nursing home
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  he came to Australia as a refugee at the age of eight if you're not Australian you may not be
• 17:07
  familiar with his celebrity here he was very successful actor all his life he was on a sitcom
• 17:15
  in the 1980s at night he's called mother and son where he played I guess a secondary character he
• 17:21
  might be sort of akin to the George Costanza in Seinfeld type character
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  mum what's wrong hello Robbie well where what you all right no he was born in a refugee camp in
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  1943 while the war was raging in Switzerland because his father was a member of the French
• 17:49
  resistance and had moved to the Swiss border in France the French side in order to run a smuggling
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  operation bringing stuff in and out of Nazi occupied or Vichy France and dad's mum was also in
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  Poland she'd fallen in love with this sort of criminal French bloke French Polish bloke
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  well Polish bloke who was living in France I should say in 1938 and he said I think we should
• 18:17
  get out of Poland and they left literally within 12 months before the Nazis invaded Poland they went
• 18:24
  to France and spent the entirety of the war fleeing from Nazis as a Jewish couple as a young Jewish
• 18:31
  couple in their teens and early 20s in Nazi occupied France there was one occasion where dad's mother
• 18:39
  had my aunt who's still with us at in her apartment in Paris and she was rounded up by the police
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  and put in a holding cell waiting to be sent east on a train to the construction camps and everyone
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  was being very compliant nobody at the time knew the extent of the horrors of what was going on in
• 19:01
  those camps this would have been 1940 or 1941 but dad's mother was not compliant the zepsis are not
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  compliant the zepsis don't play along the zepsis are independent this will all make a bit more sense
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  when I get to talking about dad she took off her shoe and started smashing it against the bars
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  of the cell and screaming out to the guards to come and get her and as she tells it one of the young
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  guards and remember these are not German guards so they're not died in the wool Nazis they're not
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  super committed to the cause these are French soldiers who've been grudgingly recruited usually
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  into the Nazi cause this young French cop or soldier comes over to the holding pen and she looks at
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  him apparently she was quite beautiful and she says I have a young daughter just a few doors down
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  please let me out I just want to get her and I promise you I can't I'll come straight back
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  I promise and he looked at her presumably knowing she had no intention of coming back to that cell
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  and said as long as you promise you coming back and smile at her and let her out
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  and all the other people in that cell went off to an unknown fate
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  she went back to the apartment grab my aunt who was two at the time and fled down to the Swiss
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  border where her on again off again boyfriend was smuggling goods and said we're going to get out
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  of here she was pregnant at the time with my father or perhaps the pregnancy happened just after
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  she'd fled and my dad's dad who was a member of the French resistance was able to bribe the
• 20:40
  border guards look the other way while they clambered over the fence between France and Switzerland
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  into neutral Switzerland one night there you my aunt started crying and screaming she was four by
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  this stage this was 1943 and dad's mom was pregnant with him and she bashed her daughter her four-year-old
• 21:04
  daughter around the head until she passed out so that she'd stop screaming so she wouldn't alert
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  the border guards who were further away so they got into Switzerland they got to a refugee camp
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  she gave birth to dad there it was not great conditions as refugee camps tend not to be
• 21:20
  and there were there was a network of foster families of staunchly Lutheran foster families
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  who would take in babies from the refugee camp and give them a decent life so in 1943 when dad was
• 21:33
  born he was fortunate enough to be fostered out to one of these families and he grew up there
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  speaking Swiss German in the Alps with this Lutheran family and I'm delighted to say that they
• 21:45
  remain part of our family today their children a good friends of ours their grandchildren and great
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  grandchildren we go to Switzerland frequently as frequently as we can to see them and think of
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  them very much as part of our kin and long story short after the war in 1945 dad's mom went back to
• 22:04
  Paris and took him she fell sick and so she sent him back to Switzerland on a train to to stay with
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  the foster family while she was hospitalized when she got better the foster family didn't want to
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  let him go they thought here is this penniless uneducated Jewish refugee woman by now she's single
• 22:25
  living in Paris scraping by exhibiting all the mental illness that you would expect from a person
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  who'd been traumatized and hunted by Nazis for the past six years why not give this little Jewish
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  kid a real shot at life and bring him up here in this little Lutheran town in the Swiss Alps
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  well dad's mom wasn't having any of that so she got on a train from Paris to Switzerland and she
• 22:49
  forcibly took him amid many many tears by this stage the Swiss were the only parents that
• 22:56
  dad knew he had now come of age he was six years old by this stage and being presented with this
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  strange woman getting off a train saying these aren't your parents I'm your parent
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  so he was dragged back to Paris where she promptly fell ill once again and knew that if she sent
• 23:15
  him back to Switzerland she'd never get him back so she put him in an orphanage and dad spent his
• 23:20
  seventh birthday in an orphanage in Paris in post-war destitute Paris eventually his mother
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  and her new boyfriend and perhaps his dad I don't know managed to scrounge enough money together
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  for them to get on a refugee boat and go to the new world so they went to the port where refugees
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  were being loaded onto giant ships and the clerk who was signing people in to put them on the boats
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  said to her where do you want to go you can go to Australia the United States or Canada
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  and she being an uneducated girl who had left Poland when she was 19 a communist Jew who'd spent
• 24:05
  her life fleeing around Europe falling ill and getting better and falling ill again had no
• 24:12
  understanding of global geography and just said to the clerk which one's further from here
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  so that's why I'm Australian they're not Canadian or American
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  so dad gets to Australia on a refugee boat when he's eight and ends up becoming one of the most
• 24:30
  successful actors in the country think of what that takes think of all the dialect lessons that
• 24:37
  you need to lose your accent completely and speak perfectly like a local think of the nose job
• 24:43
  he needed so that he wouldn't look so much like a swarthy ethnic Jew who would blend into the mainstream
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  of white Australia in the 1960s and 1970s when I was 12 years old no 10 years old we moved to the UK
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  where mom and dad had lived for four years between 1969 and 1973 and where my brother was born
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  because he wanted to achieve my dad that is his ultimate dream of working for the Royal Shakespeare
• 25:13
  that was the highest status acting gig in the world in dad's eyes perhaps not even just in dad's
• 25:19
  eyes in many eyes and we went to the UK my brother and I hated it it was winter I was viciously bullied
• 25:30
  and all I wanted to do was move back to Sydney look London can be a great place but it's a hard
• 25:36
  place to like when you're 10 years old and you know that Sydney exists so one day the call came
• 25:43
  that the Royal Shakespeare Company was accepting my father into its hallowed halls
• 25:52
  finally giving him the thing that he'd strived his entire life to achieve
• 26:00
  and he slept on it for a few nights I remember I got up one morning and he and my mom had
• 26:06
  been talking all night about what to do I don't know what happened in that conversation
• 26:15
  but they said we're going back to Australia and dad picked up the phone called his agent
• 26:23
  and said tell the RSC I'm not taking the job
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  and he put the phone down in its cradle and burst into tears
• 26:38
  talk about people believing in you talk about people prioritizing your interests over their own
• 26:47
  Judith Whirland did it for me how I'd find him and did it for me no one's ever done it for me
• 26:56
  as much as my dad and the experience of grieving a person with dementia is very weird
• 27:06
  because there's no opportunity to have the normal context that all humans require perhaps
• 27:18
  all mammals require to understand that the person is gone by context I mean one day they're there
• 27:24
  and then the next they're not there's a discontinuity in death that triggers a grieving process
• 27:29
  that's healthy we honor this with things like funerals and eulogies and wakes
• 27:36
  but with dementia every day looks basically exactly like the last but you've got this weird boiling
• 27:42
  frog syndrome where over the course of time over the slow passage of time something you knew was
• 27:48
  going to happen inevitably unfolds but you never quite caught yourself before it was going to
• 27:52
  happen and you never quite have the opportunity after it happens to contextualize it in a way that's
• 27:58
  going to trigger grief not for me at least the first time I remember noticing something was
• 28:04
  seriously wrong was we were all having Christmas in the UK I was living in New York my brother and
• 28:10
  his family were living in London so we went over to have Christmas in a beautiful cottage in the
• 28:16
  Cotswolds and dad came into the kitchen one morning and said have you seen my beautiful new belt
• 28:22
  and showed me this new belt that he had bought I said that's great and he left the room and
• 28:29
  six or seven minutes later he came in and said check out this belt have you seen my beautiful new belt
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  I said you just showed that to me he said I've got shit for brains and walked out
• 28:46
  and that was the moment at which I realized that his sort of funny whimsical forgetfulness
• 28:52
  was becoming something that was not normal he was reasonably young this would have been 10 years
• 28:58
  ago he's 80 now 70 we put on a wonderful birthday party for him for his 75th of his friends and
• 29:10
  his work colleagues and acting peers came to the theatre which had given him his start
• 29:16
  where he'd trained under the tutelage of Hayes Gordon one of the great method acting coaches
• 29:22
  and we sort of eulogized him then and in a way we knew on some level that this was a little bit
• 29:29
  like a funeral because they probably wouldn't come a time given his diagnosis which we knew about
• 29:34
  at the time that where we would be able to speak of him and to him in a way that revered his
• 29:44
  vitality while he still possessed it and so the truly awful thing about Alzheimer's
• 29:55
  which blindsided me frankly is the lack of something to grieve well when the diagnosis first came
• 30:05
  everyone said to me oh my goodness there's going to be a grueling process it's going to be
• 30:09
  you're going to be in a constant state of grief this is going to be terrible you know get ready for
• 30:13
  it and what's been so macabre is that I haven't felt any of that I just felt empty I've just felt
• 30:23
  quarterized towards it I'm not saying this is everyone's experience I'm sure there are multiple
• 30:28
  different experiences there's many ways of experiencing the loss of a loved one to the mentors there
• 30:32
  are people in the world but my personal experience has been that it's insidiously non-greefe
• 30:39
  triggering there should be grief they deserve to be grief because the vital intellectual loving
• 30:47
  compassionate wildly independent aesthetic kind of renaissance man that my father was has
• 30:55
  disappeared but there was never a cure to grieve it there was never a trigger there was never
• 31:03
  a context so perhaps that's the answer to my daughter's question of why I've cried today grieving
• 31:12
  Judith Willan and I've never cried grieving my dad I suppose we'll check back in after he's dead
• 31:20
  but it's reminded me of what's important in life and of the power that individual people can have
• 31:27
  on others when they stand up for something they believe in and when they back another person
• 31:35
  regardless of people around them telling them that they shouldn't
• 31:40
  dad had a saying that he used to say which is that the incredible thing about life is that
• 31:46
  it feels like you're bashing your head against a brick wall a lot of the time
• 31:50
  you can't quite get what you want you've got ambitions that don't plan out your plans are always
• 31:56
  thwarted and frustrated if you want to see God laugh telling your plans as the old adage goes
• 32:02
  but dad said the extraordinary thing about life is if you do bash your head against the brick wall
• 32:08
  long enough eventually it's the brick wall not your head that gives way
• 32:16
  he has taken that principle through his whole life I hope it's useful to hear it
• 32:23
  I'm going to miss Judith Willan a lot I'll see you for a regular show next week lots of life