The Long Goodbye- Navigating the Caregivers Journey

Transcript

• 00:00Welcome to the opening session
• 00:02of the,
• 00:03the our evening ethics seminar
• 00:05series.
• 00:06I'm delighted you're here. We
• 00:07have a full house tonight.
• 00:09My name is Mark Mercurio.
• 00:10I'm the co director of
• 00:11the program for biomedical ethics
• 00:13as well as the director
• 00:14of the Yale pediatric ethics
• 00:16program, and those two programs
• 00:17share this share this forum.
• 00:19We alternate every two weeks,
• 00:22and I think many of
• 00:23you have seen our calendar
• 00:24for the year. You are
• 00:25all cordially invited to as
• 00:27many of these as you're
• 00:28interested in. We're delighted that
• 00:29you're here. I'm not surprising
• 00:31that tonight's speaker has, drawn
• 00:33such a such a great
• 00:34crowd, and we're gonna get
• 00:35to, to Bob in a
• 00:36minute.
• 00:38First of all, just kinda
• 00:39let you know how the
• 00:40evening goes. And and I
• 00:41wanna start actually by thanking
• 00:42a a number of people,
• 00:43and I'll save Julius for
• 00:44last.
• 00:45Miss Karen Kolb, who's the
• 00:47director of our program, mister
• 00:48Amir Glenn, who helps us
• 00:49organize these things at night,
• 00:51and I appreciate that, Karen
• 00:52and Amir. And, and my
• 00:53associate directors yeah. Why not?
• 00:58And my associate directors are
• 01:00Jack Hughes and Sarah Hall.
• 01:01I'm delighted you're here and
• 01:02other luminaries in medical ethics
• 01:04on campus such as Ernie
• 01:05Moritz and Ben Tolchin and
• 01:07others.
• 01:08It's great to see you
• 01:09all. Thank you so much.
• 01:10Many of you guys are
• 01:11regulars, and you know how
• 01:12this works,
• 01:14and many of you, are
• 01:15not. So just to let
• 01:16you know that I'm gonna,
• 01:17in a minute, introduce Julia
• 01:19Shapiro, who will introduce Bob
• 01:20Whitey.
• 01:22It was, doctor Shapiro's work.
• 01:26He he was the one
• 01:27who first introduced me to
• 01:28Bob and was made that
• 01:29connection for us and,
• 01:31very much helped make this
• 01:32evening happen. So we'll get
• 01:33to Julius in one second.
• 01:35How this evening works, how
• 01:36these programs always work is
• 01:38the speaker will talk for
• 01:39a while,
• 01:40and Bob's gonna speak for
• 01:41somewhere around thirty five minutes,
• 01:43give or take. It's up
• 01:44to him. We've got some
• 01:45room. And then after that,
• 01:46actually, he and I will
• 01:47sit down for a bit.
• 01:48I'm gonna ask him a
• 01:49few questions, and then there
• 01:51will be time for you
• 01:52folks to ask him a
• 01:52few questions.
• 01:53And, and because I want
• 01:55the people on Zoom to
• 01:56be able to hear what's
• 01:57going on, it's because I
• 01:57want I wanna hear what's
• 01:59going on, and I want
• 01:59you all to hear what's
• 02:00going on. If you have
• 02:01a question, please wait, and
• 02:03either, Amir or Karen will
• 02:04bring a microphone to you.
• 02:05Wait till you have a
• 02:06microphone in your hand, and
• 02:07I tell you yes, please,
• 02:08and then please go ahead
• 02:09with your question. I it's
• 02:11entirely possible. Not everybody will
• 02:12get to ask or say
• 02:13what they wanna ask or
• 02:14say, and I apologize for
• 02:16that in advance. I particularly
• 02:17apologize to the person who
• 02:19at six twenty nine has
• 02:20got something really important and
• 02:22insightful to say because I'm
• 02:23not gonna let you say
• 02:24it.
• 02:25Because as a promise to
• 02:26the audience in general, I
• 02:27will stop this at six
• 02:28thirty, no matter who's talking
• 02:30or what's going on. And,
• 02:32I might enjoy it. That,
• 02:33at that point, I might
• 02:35invite,
• 02:36Bob if he has any
• 02:36final thing he wants to
• 02:37say. But at that point,
• 02:38he may be talked out
• 02:39and not wanna say anything
• 02:40else. But I I'm I
• 02:42I am gonna stop this
• 02:43at six thirty,
• 02:44so you guys can get
• 02:45home to your families and
• 02:46to relax a bit. But
• 02:47just set some time apart
• 02:48tonight, and I'm so glad
• 02:49you did. I think it's
• 02:50gonna be worth your time
• 02:51and worth your while. I
• 02:52appreciate that the room is
• 02:53full, and I appreciate that
• 02:54a lot of folks are
• 02:55joining us, on Zoom as
• 02:56well.
• 02:57Doctor Julie Shapiro in the
• 02:59department of radiology and
• 03:01diagnostic imaging and interventional radiology
• 03:03and all kinds of stuff
• 03:04like that.
• 03:05Julius has been on the
• 03:06faculty of around. He and
• 03:07I have interacted,
• 03:09in another forum,
• 03:10and I was so pleased
• 03:11when he reached out to
• 03:12me and offered me the
• 03:13chance,
• 03:14to bring, mister Bob Whitey
• 03:15here. And so I'd like,
• 03:17to invite Julius to come
• 03:18out now and introduce our
• 03:19esteemed speaker for this evening.
• 03:26Thank you very, very much,
• 03:27and, welcome to the Bioethics
• 03:29in Medicine Seminar. This is
• 03:31the opening series, and I'm
• 03:32really honored,
• 03:33to be cohosting this together
• 03:35with Mark today. I'm an
• 03:36interventional radiologist here. And, today,
• 03:38we have a very, very
• 03:40special pleasure
• 03:41and honor, and I'm personally
• 03:43really excited to be, introducing
• 03:45someone who generally doesn't need,
• 03:47an introduction, particularly among, fans
• 03:49of cinematography.
• 03:50A hearty welcome to Robert
• 03:51Whitey.
• 03:58Now Bob is a storyteller.
• 04:01He's a screenwriter. He is
• 04:02a producer and director who
• 04:03has become world famous, and
• 04:05I truly believe that, as
• 04:06the principal director and executive
• 04:08producer of Curb Your Enthusiasm
• 04:09as well as other works
• 04:10that include the Marx Brothers
• 04:12in a nutshell and documentaries
• 04:14about the lifeworks of famous
• 04:15people like, Woody Allen, Lenny
• 04:17Bruce, and importantly,
• 04:18Kurt Vonnegut.
• 04:20Bob is a Golden Globe
• 04:21and three times Emmy Award
• 04:22winner and received an Academy
• 04:24Award nomination
• 04:25along with many other awards
• 04:26and recognitions.
• 04:28He is one of the
• 04:29most talented people in comedy
• 04:31and shows.
• 04:32Bob grew up in Fullerton,
• 04:33Orange County, California and went
• 04:35to public school.
• 04:36He later went to USC
• 04:38where,
• 04:38he took film classes. Persistence
• 04:40really matters, important for the
• 04:42young people here to know.
• 04:43After his third rejection from
• 04:45the USC cinema department, he
• 04:47started looking for real work
• 04:49and landed his big first
• 04:50hit, the Marx Brothers in
• 04:51a nutshell for PBS at
• 04:53the early age of twenty
• 04:54two, which immediately,
• 04:56earned him the name,
• 04:57for boy
• 04:59wonder. The rest of his
• 05:00career is marked by many,
• 05:01many successes, success after success
• 05:03in cinematography,
• 05:04owed to his incredible wit,
• 05:06sense of humor, intuition for
• 05:08situational comedy,
• 05:09dedication to telling stories
• 05:11about outstanding individuals he encountered
• 05:13in his life.
• 05:15However, Bob is not here
• 05:17today to humor us.
• 05:19He's here today to share
• 05:20a very unique personal story
• 05:22about his life,
• 05:24love, and marriage, and about
• 05:25being a caregiver during a
• 05:27long goodbye from his beloved
• 05:29wife, Linda.
• 05:30Bob processes and expresses his
• 05:32loss of, his loved one
• 05:34and his grief in ways
• 05:35that few of us can
• 05:37verbalize
• 05:38so eloquently.
• 05:39We're here today to learn
• 05:41from his caregiver perspective, and
• 05:42he has so graciously,
• 05:44agreed to speak with us
• 05:45about this today. It's very
• 05:46important for us that we
• 05:47listen.
• 05:48Bob, welcome to Yale, and
• 05:50it's truly a remarkable once
• 05:51in a lifetime honor to
• 05:53welcome you here. Thank
• 06:03you.
• 06:05Let's hear it for analog.
• 06:10Old school, baby.
• 06:13Show of hands. How many
• 06:14of you are here for
• 06:15the Panera?
• 06:18Oh, okay.
• 06:24In the name oh, wait.
• 06:25Hold on.
• 06:27Already a typo. Navigate the
• 06:28caregivers. What what this is
• 06:30a this is a fancy
• 06:31college.
• 06:32Navigate the care come on,
• 06:34man. There you go. Thank
• 06:36you, Amir.
• 06:38Jeez.
• 06:42In the name of full
• 06:44disclosure, I should tell you
• 06:45a couple things right up
• 06:46front.
• 06:47First is that,
• 06:48over the next
• 06:50half hour at least, you
• 06:52will almost certainly see a
• 06:53grown man cry.
• 06:56Maybe a little, maybe a
• 06:57lot.
• 06:58Maybe I'll just choke up
• 06:59a little bit. Maybe I'll
• 07:00sob. I don't know.
• 07:02But if that's more than
• 07:03you can handle, you'd best
• 07:04be advised to leave now.
• 07:07Anyone?
• 07:08Okay.
• 07:10Caveat emptor.
• 07:12It's been a year and
• 07:13eight months since Linda died,
• 07:15and I still cry all
• 07:16the time.
• 07:17Fortunately, I don't have a
• 07:18real job,
• 07:20meaning I don't have to
• 07:21go into an office and
• 07:22work at a cubicle where
• 07:23my outbreaks would cause alarm
• 07:25or annoyance among my coworkers,
• 07:27so I can pretty much
• 07:28let loose anytime I want.
• 07:30But if there were a
• 07:31live video feed in my
• 07:33home that allowed you to
• 07:34view an average day that
• 07:35included a few crying jags,
• 07:38your immediate instinct might be
• 07:39to ask, are you alright?
• 07:42And my response would be
• 07:43this. It's because I'm crying
• 07:45that I'm alright.
• 07:48So that's my first piece
• 07:49of advice to anyone who
• 07:50asked me how to navigate
• 07:51the grieving process is let
• 07:53it take you wherever it
• 07:54takes you.
• 07:55As we used to say
• 07:56in the seventies,
• 07:57go with the flow.
• 08:00I also offer this pearl
• 08:02of wisdom.
• 08:03How lucky am I to
• 08:04grieve this much?
• 08:06It means I loved this
• 08:07much.
• 08:09So here's my second disclosure.
• 08:12Very little, if anything, I
• 08:13say to you today is
• 08:14steeped in any medical evidence.
• 08:17The speech is not AMA
• 08:18approved.
• 08:19It is not instructional in
• 08:21nature.
• 08:22Everything I have to say
• 08:23falls under the term that
• 08:25doctors and people of science
• 08:26hate so much.
• 08:28Anecdotal.
• 08:30Much to my late parents'
• 08:31chagrin, I am not a
• 08:33doctor.
• 08:34I'm a storyteller.
• 08:36Anecdotes are all I've got.
• 08:38My hope is that some
• 08:39of my anecdotes may be
• 08:40of use to you people
• 08:41who have no doubt made
• 08:42your parents very happy.
• 08:46At least one.
• 08:51Throughout the entire journey of
• 08:52Linda's illness, which from early
• 08:54symptoms
• 08:55until her death was approximately
• 08:57six and a half years,
• 08:59thankfully, she spent very little
• 09:00time in hospitals.
• 09:02In fact, over that entire
• 09:04span during her final month,
• 09:06she only spent about three
• 09:07weeks in hospital.
• 09:08Then her last week was
• 09:09spent at home where she
• 09:10died in our bedroom.
• 09:12But during those three weeks,
• 09:14whenever a new doctor or
• 09:16nurse would come on duty,
• 09:18I always made sure to
• 09:19show them photos of Linda
• 09:21when she was vibrant and
• 09:22healthy.
• 09:23I wanted them to see
• 09:24who she really was
• 09:26and not just as a
• 09:27very worn down patient.
• 09:29And since I'm going to
• 09:30spend so much time today
• 09:32talking about Linda as patient,
• 09:34again, I'm going to intersperse
• 09:36little verbal snapshots of Linda
• 09:38when she was healthy and
• 09:39vibrant and funny and beautiful.
• 09:42So like those other doctors
• 09:43and nurses, you'll get a
• 09:45sense of who she really
• 09:46was.
• 09:48For example, here's my first
• 09:49verbal snapshot.
• 09:51Always thinking ahead, a few
• 09:53years after we were married,
• 09:54we purchased side by side
• 09:57burial plots.
• 09:58A few weeks later, I
• 09:59asked her what she wanted
• 10:00her grave marker to say.
• 10:03With a straight face, she
• 10:04immediately answered,
• 10:05I'm with
• 10:10stupid. K. You get the
• 10:11idea.
• 10:12Alright. On with the show.
• 10:13Everything up till now has
• 10:14been preamble. Let's get on
• 10:16with the amble.
• 10:20Imagine this.
• 10:21You were in your car
• 10:23driving down a single lane
• 10:24highway.
• 10:25In your passenger seat by
• 10:27your side is the person
• 10:28you care most about in
• 10:29the whole world.
• 10:31This much you know.
• 10:33Headed in the opposite direction
• 10:35on the single lane highway
• 10:37is a Mack truck.
• 10:39You don't know how far
• 10:40down the road it is
• 10:41or how fast it's traveling.
• 10:44Did I mention your, steering
• 10:46wheel doesn't work and your
• 10:47brakes are out?
• 10:49You as the driver are
• 10:50at least wearing a seat
• 10:51belt. Your passenger is not.
• 10:54What is certain is that
• 10:55there will eventually be a
• 10:56terrific crash.
• 10:58You can only hope that
• 10:59that truck is a good
• 11:00distance away and traveling slowly.
• 11:02But even so, a fatal
• 11:04collision is certainly coming.
• 11:07For now, your passenger is
• 11:08still with you, and you're
• 11:09grateful for that.
• 11:10But because you know what's
• 11:11in store, it's hardly a
• 11:13joyride.
• 11:14All you can do is
• 11:15hold your passenger's hand and
• 11:17be thankful that the truck
• 11:18is still beyond the horizon
• 11:21until it isn't.
• 11:24Now if you think that
• 11:25sounds like fun,
• 11:26imagine this.
• 11:28You're sicker than you've ever
• 11:29been in your entire life.
• 11:32Imagine the worst flu you've
• 11:33ever had or think back
• 11:34if you had COVID or
• 11:36since you've all survived
• 11:37medical school or currently surviving
• 11:39medical school. Just think of
• 11:40the worst hangover you've ever
• 11:42had.
• 11:44It's all you can do
• 11:45to get out of bed
• 11:46or get dressed or get
• 11:47some food down, but here's
• 11:48the difference. With flu or
• 11:50COVID or the hangover,
• 11:52you've known or at least
• 11:54hoped you'd get through it
• 11:55and return to life as
• 11:56usual.
• 11:57But with this special flu
• 11:59COVID hangover,
• 12:01you know you won't ever
• 12:02feel better.
• 12:04This is now your permanent
• 12:06state.
• 12:08This is now your permanent
• 12:11state.
• 12:13In fact, as lousy as
• 12:14you feel, this is as
• 12:16good as you're ever going
• 12:17to feel.
• 12:18Or to put it another
• 12:19way, you're only going to
• 12:21feel worse and worse over
• 12:22time.
• 12:23And no matter how brave
• 12:24you are or how much
• 12:25energy you try to muster
• 12:27or how much love surrounds
• 12:29you,
• 12:30what awaits you at the
• 12:31end of this trial is
• 12:32not recovery,
• 12:34but certain death.
• 12:37Enjoying my cheerful little talk
• 12:38so far?
• 12:40Get what you pay for.
• 12:41What'd you pay to get
• 12:42in there? Nothing. Right? So
• 12:44just anyway, these analogies I've
• 12:46just provided, the Mack truck
• 12:47collision and the debilitating flu
• 12:49that only gets worse
• 12:51is how I can most
• 12:52aptly describe the experience of
• 12:53a caregiver for a loved
• 12:55one with a progressive illness
• 12:57and the reality of day
• 12:58to day life for the
• 12:59person who has that illness.
• 13:03To follow-up on this metaphor,
• 13:04because I was wearing my
• 13:05seat belt, I survived the
• 13:07collision with the Mack truck.
• 13:09But every proverbial bone in
• 13:10my body was broken.
• 13:13How do I feel now?
• 13:15I feel like I was
• 13:16properly patched up. My bones
• 13:18have healed as expected,
• 13:19and I'm able to walk
• 13:21and talk and function,
• 13:23but something is off,
• 13:25something not visible to the
• 13:26naked eye.
• 13:28The psychologist would likely tell
• 13:30me that I have p
• 13:31PTSD, and perhaps I do.
• 13:33The way I phrased it
• 13:34to some of my friends
• 13:36is that my body is
• 13:37in one piece, but my
• 13:38soul is in traction.
• 13:43On the evening of September
• 13:44thirtieth nineteen ninety four, which
• 13:46in a few weeks will
• 13:47be exactly thirty years ago,
• 13:50accompanied by a few friends,
• 13:52I walked into a coffee
• 13:53joint in my LA neighborhood
• 13:55called Cafe Aroma.
• 13:57Already seated in the patio
• 13:59was this remarkably
• 14:01attractive woman
• 14:02way out of my league.
• 14:04She was there with a
• 14:05female friend, and they were
• 14:06at a table, thankfully, much
• 14:08too big for just two
• 14:09people.
• 14:10So as luck would have
• 14:11it, the friends I was
• 14:12with knew these women,
• 14:14so we were all invited
• 14:15to join them.
• 14:17Hot dog.
• 14:19I made sure to grab
• 14:20the seat next to this
• 14:21woman whose name I would
• 14:22learn was Linda Bates.
• 14:25Linda had it all.
• 14:27Beauty,
• 14:28style,
• 14:29grace, intelligence,
• 14:31wit, a great laugh,
• 14:33a blinding smile, and if
• 14:34I can say this in
• 14:35the year of our lord
• 14:36two thousand twenty four,
• 14:38a pair of GAMS that
• 14:39demanded to be shown off
• 14:41and were.
• 14:43For you youngsters, GAMS are
• 14:44legs.
• 14:46Exhibit a.
• 14:49I kept a journal in
• 14:50those days, and on that
• 14:52night, the first line of
• 14:53my journal entry was,
• 14:55I think I may be
• 14:57in big trouble.
• 14:59We were married on July
• 15:01eleventh nineteen ninety eight.
• 15:04The song we chose for
• 15:05the first dance at our
• 15:06wedding was Sinatra's rendition Frank
• 15:08Sinatra's rendition of Come Fly
• 15:10With Me
• 15:11because it spoke of travel
• 15:13and romance and setting out
• 15:14on a journey with someone
• 15:15you're crazy about,
• 15:18and also was a simple
• 15:19foxtrot so even I could
• 15:21muster my way through it.
• 15:23Over the years, whenever it
• 15:24started to play on the
• 15:25Sinatra station in our home,
• 15:27I'd call out to Linda,
• 15:28sweetheart,
• 15:29they're playing our song.
• 15:31And we would stop whatever
• 15:33we were doing
• 15:35and dance to it in
• 15:36our living room or in
• 15:37the kitchen.
• 15:40To this day, whenever Come
• 15:41Fly With Me plays in
• 15:42our home or in my
• 15:43car, I still call out,
• 15:45sweetheart,
• 15:46they're playing our song.
• 15:48That's what a sap I've
• 15:49become.
• 15:51Alright. Snapshot number two.
• 15:53In two thousand three, we
• 15:55made our first trip to
• 15:56Europe together
• 15:57where our first stop was
• 15:58Amsterdam.
• 15:59Like every good tourist, we
• 16:01walked around the red light
• 16:02district one night.
• 16:03There were signs everywhere advertising
• 16:05all kinds of live sex
• 16:07acts on
• 16:08stage. We were amused to
• 16:09see one sign that was
• 16:10written in Hebrew.
• 16:12I said to Linda, I
• 16:13wonder what that sign says.
• 16:15Without missing a beat, she
• 16:16said, probably closed Saturdays.
• 16:24If you have a spouse,
• 16:26a partner, a soulmate,
• 16:28at some point, you'll inevitably
• 16:29play that morbid game of,
• 16:31would I rather go first
• 16:33or would I rather they
• 16:34go first?
• 16:36Because let's face it, unless
• 16:37there's a car crash or
• 16:38a plane crash
• 16:40or you live in California
• 16:41and an earthquake causes the
• 16:42roof to fall in on
• 16:43you,
• 16:44one of you will go
• 16:45before the other.
• 16:47Every time that morbid game
• 16:49popped into my head,
• 16:50I opted for,
• 16:52well, the earthquake.
• 16:54Until one day, Linda had
• 16:55to undergo a lung biopsy
• 16:57that necessitated a general anesthesia.
• 16:59This was years before her
• 17:02progressive diagnosis.
• 17:05Somehow I talked myself into
• 17:06the OR
• 17:07so I could be with
• 17:08her as she went under.
• 17:10When they put the mask
• 17:11over her nose and mouth,
• 17:12which at this point was
• 17:13just oxygen, I reckon,
• 17:14she started to panic a
• 17:15little bit, and I could
• 17:16see tears forming in her
• 17:17eyes.
• 17:18I had them remove the
• 17:19mask momentarily as I spoke
• 17:21soothingly to her.
• 17:23Honey, this is nothing. It's
• 17:24just oxygen. It's gonna relax
• 17:26you. When they give you
• 17:28the anesthesia, you're just gonna
• 17:29feel very cozy and sleepy,
• 17:31and then you'll open your
• 17:32eyes, and the first thing
• 17:33you'll see is me. Okay?
• 17:36She calmed down and nodded,
• 17:37and they put the mask
• 17:38back on while they held
• 17:39her hand.
• 17:44It was at this moment
• 17:45that it had an epiphany
• 17:46of sorts.
• 17:47I can play this role.
• 17:49If Linda ever got seriously
• 17:51ill, I can calm her.
• 17:53And if the end comes,
• 17:55I can be the final
• 17:56voice she hears,
• 17:57the final face she sees,
• 17:59and I'll know what to
• 18:00say, and I can ease
• 18:01her into it.
• 18:03Perhaps if I had a
• 18:04choice,
• 18:05I'd choose to survive her
• 18:06for that reason.
• 18:09Still, I'd prefer to go
• 18:10together in the earthquake
• 18:11in our nineties,
• 18:13But, otherwise,
• 18:14I suppose this could be
• 18:15my role.
• 18:17Little did I know.
• 18:20About midyear two thousand sixteen,
• 18:22I started to notice something
• 18:23was slightly off with Linda.
• 18:25If I had to explain
• 18:26it, I wouldn't even quite
• 18:28know how. It was subtle.
• 18:30The kinds of changes that
• 18:31only a spouse or a
• 18:32life partner would notice.
• 18:34Eventually, that undefinable change became
• 18:37more pronounced, but still hard
• 18:39to pinpoint.
• 18:40After weeks, perhaps months of
• 18:42trying to screw up the
• 18:43courage to mention it to
• 18:44her,
• 18:45I finally spoke up and
• 18:46told her I was concerned
• 18:47something was going on,
• 18:50and perhaps we should see
• 18:51a doctor.
• 18:53She was in denial about
• 18:54it and insisted nothing was
• 18:55wrong.
• 18:56I could tell she resented
• 18:58the very notion that I
• 18:59was even suggesting something was
• 19:00amiss.
• 19:01I wasn't going to push
• 19:02it, but I also wasn't
• 19:04going to ignore it.
• 19:05I was walking a fine
• 19:06line.
• 19:08I remember
• 19:10one day she defiantly said
• 19:11to me, so what are
• 19:12you saying? You think I
• 19:13should have my head examined?
• 19:14And I said, yes. That's
• 19:15exactly what I'm saying. I
• 19:17think we should have a
• 19:18doctor examine your head and
• 19:19find out what's going on.
• 19:22Remained a standoff for some
• 19:23time.
• 19:25Then one day, she walked
• 19:26into my home office and
• 19:27announced,
• 19:28you know what?
• 19:30I think you might be
• 19:31right.
• 19:33I think there may be
• 19:34something wrong.
• 19:36Maybe I should get it
• 19:37checked out.
• 19:39I was relieved and terrified.
• 19:41I so wanted her to
• 19:43be right in the standoff.
• 19:45I wanted it to be
• 19:46my unwarranted overreaction.
• 19:49If she was coming around
• 19:50to my point of view,
• 19:52it meant the earliest writing
• 19:53was now on the wall.
• 19:56Later, she would explain what
• 19:58led her to make that
• 19:59announcement.
• 19:59She said she had found
• 20:00herself making little errors with
• 20:02increasing frequency.
• 20:04Little things, math errors, typing
• 20:05errors,
• 20:06misplacing things, forgetting things.
• 20:09Every time this happened, she
• 20:10was able to write it
• 20:11off with an with an
• 20:12excuse.
• 20:13I got to bed too
• 20:14late last night. I had
• 20:16a lot of my mind
• 20:17this morning. I took some
• 20:18cold medication earlier.
• 20:20All legitimate excuses,
• 20:24but she found these excuses
• 20:25were now piling up like
• 20:26a Jenga tower and on
• 20:28the verge of tumbling down.
• 20:30That's when she walked into
• 20:31my office.
• 20:33We had our annual physicals
• 20:35coming up in a couple
• 20:35of weeks, so I decided
• 20:36that's when we could bring
• 20:37it up with our family
• 20:38internist.
• 20:40He performed a mini cog
• 20:41test, counting backwards from seven,
• 20:43repeating a list of words,
• 20:44drawing shapes,
• 20:46etcetera.
• 20:47She didn't do horribly, but
• 20:49she didn't exactly ace it
• 20:50either.
• 20:51Our doctor referred us to
• 20:52a neurologist, and by this
• 20:54time, I was finally able
• 20:55to nail down a specific
• 20:56change that had presented itself.
• 21:00Her speech was slowing
• 21:03slightly. She wasn't having trouble
• 21:04with vocabulary,
• 21:06but it was as if
• 21:07talking was taking a little
• 21:09more effort just to form
• 21:10her words.
• 21:12After some more advanced testing,
• 21:14the neurologist
• 21:15diagnosed her as having PPA,
• 21:18primary progressive aphasia,
• 21:20a form of dementia.
• 21:23We knew that when given
• 21:24a diagnosis, the last word
• 21:25you wanna hear is progressive.
• 21:28No stopping it.
• 21:30No reversing it. No cure.
• 21:33It's only going in one
• 21:34direction.
• 21:35The Mack truck
• 21:37is on its way.
• 21:45After the consultation with the
• 21:47neurologist,
• 21:50we sat in his reception
• 21:52area waiting for some paperwork.
• 21:53It was the first time
• 21:54Linda and I cried
• 21:56since this whole thing began.
• 22:01Long before this ordeal, I
• 22:02used to carry this notion
• 22:03that one should be thankful
• 22:04for every unremarkable
• 22:06day of your life.
• 22:08Because one day, you could
• 22:09get a call from your
• 22:10doctor saying,
• 22:11I've got your test results.
• 22:13We need to talk.
• 22:15After that phone call, you
• 22:17will long for those boring,
• 22:19unremarkable days.
• 22:21So be thankful, I used
• 22:22to say, for every day
• 22:23that you don't get that
• 22:25call.
• 22:26The reason Linda and I
• 22:27cried that day in the
• 22:28reception area was because we
• 22:30both knew we had just
• 22:31entered the post phone call
• 22:33phase of our lives.
• 22:36And, indeed, nothing would ever
• 22:37be the same,
• 22:38except the most
• 22:40important thing,
• 22:41our bond to one another.
• 22:46Okay.
• 22:47Snapshot number three. Snap.
• 22:50Whenever I was out of
• 22:51town on business for an
• 22:52extended period of time,
• 22:54Linda and I would have
• 22:55nightly video talks in our
• 22:57computers via FaceTime.
• 22:59But first, I would text
• 23:00her to see if she
• 23:01was available, and her response
• 23:03was always this.
• 23:07Just give me a minute
• 23:08to put on some lipstick.
• 23:13After many years of marriage,
• 23:14she still wanted to look
• 23:15her best for her husband.
• 23:19For close to a year,
• 23:20we were operating I'm glad
• 23:21I gave you that disclaimer
• 23:22upfront.
• 23:25For close to a year,
• 23:26we were operating under the
• 23:27impression that Linda had primary
• 23:28progressive aphasia
• 23:30until we applied to participate
• 23:31in some experimental studies in
• 23:33PPA at Northwestern.
• 23:35After consulting with a specialist
• 23:37via teleconference, she told us
• 23:39she didn't think that Linda
• 23:40had PPA
• 23:41and suggest we seek a
• 23:42second opinion.
• 23:45After meeting with a few
• 23:46specialists in frontal temporal disorders,
• 23:48we got a new diagnosis,
• 23:50progressive
• 23:51supranuclear
• 23:52palsy,
• 23:53PSP.
• 23:55Alas, the word progressive was
• 23:57still in there.
• 23:58In some ways, it was
• 23:59a lateral move since at
• 24:01the end of the day,
• 24:01so many of these Parkinsonian
• 24:03ailments wind up in the
• 24:04same place, and as you
• 24:05all know, the house always
• 24:07wins.
• 24:09Linda likened it to changing
• 24:10deck chairs on the Titanic.
• 24:13I told her that there
• 24:14was one way in which
• 24:15PSP was a slight upgrade
• 24:17from PPA.
• 24:18PSP
• 24:19was not a form of
• 24:20dementia.
• 24:23Looking back now, I'm extremely
• 24:24grateful for the change in
• 24:26diagnosis because as challenging as
• 24:27the whole experience was,
• 24:29I never had to worry
• 24:30about whether Linda knew she
• 24:31was loved,
• 24:36that that she was in
• 24:37our home and that I
• 24:38was there taking care of
• 24:39her.
• 24:42If she no longer recognized
• 24:43me,
• 24:45if telling her I loved
• 24:46her a hundred times a
• 24:47day
• 24:48and never registered on her,
• 24:50it would have shattered my
• 24:52heart
• 24:53into more pieces than I
• 24:54could count.
• 24:56And yet tens of millions
• 24:58of people go through exactly
• 25:00that.
• 25:01Imagine.
• 25:05In the face of the
• 25:06devastation that would unfold over
• 25:08the coming years,
• 25:09there were countless things for
• 25:11which I was grateful.
• 25:13One was that Linda's personality
• 25:14never changed.
• 25:16With so many of these
• 25:17frontal temporal disorders, you hear
• 25:19all kinds of stories about
• 25:20the stricken person turning mean
• 25:22and nasty
• 25:23and blaming their loved one
• 25:24for all kinds of imagined
• 25:25conspiracies and transgressions
• 25:27and infidelities
• 25:28and so on.
• 25:30I was so lucky that
• 25:31Linda remained her sweet self
• 25:33until her last breath.
• 25:35A phrase that I always
• 25:36thought suited Linda
• 25:38was tenderhearted.
• 25:41She was also remarkably cooperative
• 25:43about the things she had
• 25:44to give up one by
• 25:45one.
• 25:47She was accepting the day
• 25:49I told her she couldn't
• 25:50drive anymore.
• 25:51She accepted when she had
• 25:52to walk with a rollator,
• 25:54when we had to install
• 25:55grab bars in the bathroom,
• 25:57when I had to hire
• 25:57a part time caregiver,
• 25:59when I had to puree
• 26:00her food, when I started
• 26:02to spoon feed her,
• 26:04and brush her teeth and
• 26:05bathe her.
• 26:07She made these adjustments with
• 26:09grace and dignity,
• 26:11but I know it wasn't
• 26:12easy.
• 26:14Once she made a concerted
• 26:15effort to write a brief
• 26:16note to me,
• 26:20it simply said,
• 26:23I miss walking around.
• 26:29Brief interjection about that word
• 26:31caregiver.
• 26:32I remember being taken aback
• 26:34the first time I heard
• 26:34that word applied to myself.
• 26:37I always thought of as
• 26:38of a caregiver as a
• 26:39professional person that you hire
• 26:41to lend assistance when a
• 26:42loved one is ailing. I
• 26:44never thought of myself as
• 26:45a caregiver.
• 26:46To my way of thinking,
• 26:47I was simply her husband.
• 26:49You know all that in
• 26:51sickness and in health till
• 26:52death do us part stuff?
• 26:53Yeah. Well,
• 26:55it means something.
• 26:56Though my response to this
• 26:58new phase in our lives
• 26:59would have
• 27:00not been one bit different
• 27:02if we hadn't taken those
• 27:03vows. By the way, a
• 27:04word of advice.
• 27:06If you're considering getting married,
• 27:09don't get married to your
• 27:11partner unless they're going to
• 27:12look at you like this
• 27:13all through the ceremony.
• 27:16Short of that, think twice.
• 27:21Oops.
• 27:26I would learn over time
• 27:28that an important part of
• 27:29caregiving is improvising,
• 27:31especially when dealing with a
• 27:33progressive illness
• 27:34where the ground is continually
• 27:36shifting and the goalposts are
• 27:37always moving.
• 27:40Early on in her illness,
• 27:41if Linda wanted, say, a
• 27:42glass of water,
• 27:44she could just ask for
• 27:45it.
• 27:46But what happens when the
• 27:47simplest of phrases becomes a
• 27:48struggle to articulate?
• 27:50How do you know what
• 27:51your loved one needs?
• 27:53Asking what she wants can
• 27:54create anxiety and struggle if
• 27:55she can't answer.
• 27:57So I learned to distill
• 27:58things down to yes or
• 27:59no questions.
• 28:01Do you want a glass
• 28:02of water?
• 28:03A nod of the head,
• 28:04and you're good to go.
• 28:06But what if that's not
• 28:07what she wants?
• 28:11Eventually, I created a picture
• 28:13board.
• 28:14A picture of a bed
• 28:15with the word bed beneath
• 28:16it, a glass of water,
• 28:17a toilet, a sandwich,
• 28:19picture of ice cream
• 28:20allowed her to point to
• 28:21what she wanted.
• 28:24Also, for yes or no
• 28:25questions, thumbs up and thumbs
• 28:26down was a handy means
• 28:28of communication.
• 28:30I also had a piece
• 28:31of paper that had yes
• 28:32written on top and then
• 28:33a horizontal line and then
• 28:35no written beneath.
• 28:37So long as she could
• 28:38point, I could get some
• 28:39basic questions answered.
• 28:42But eventually even pointing or
• 28:43giving a thumbs up or
• 28:44down would become difficult to
• 28:46manage.
• 28:47With most progressive illnesses, the
• 28:49best you can come up
• 28:50with is a temporary solution
• 28:52until you come up with
• 28:53the next one.
• 28:55When she no longer had
• 28:56the option of calling out
• 28:57to me when she needed
• 28:58something, I put little tea
• 28:59bells
• 29:00in every room of the
• 29:01house,
• 29:02including the bathrooms. If she
• 29:04needed me, she could just
• 29:05ring the bell.
• 29:06That worked great for a
• 29:07while until ringing the bell
• 29:09was more effort than she
• 29:10could muster.
• 29:14Snapshot number four.
• 29:16The only advantage to Linda's
• 29:17illness was it qualified us
• 29:19for a blue parking placard,
• 29:21which in LA is worth
• 29:22its weight in gold.
• 29:24I would tell her, way
• 29:25to take one for the
• 29:26team, sweetheart.
• 29:29Of course, she couldn't drive
• 29:30anymore, but I was happy
• 29:31to serve as a chauffeur.
• 29:33When we first got the
• 29:34placard, I wasn't certain of
• 29:35all the rules.
• 29:37The day after it arrived,
• 29:40we went to the post
• 29:41office. I parked in a
• 29:42blue spot, but questioned out
• 29:43loud whether it was legit
• 29:45to take a handicap spot
• 29:47if Linda was staying in
• 29:48the car.
• 29:50As I opened the door
• 29:51to get out, she said
• 29:52to me quietly,
• 29:53you better limp.
• 30:01Because it's such a rare
• 30:02illness, Linda used to joke
• 30:04that getting PSP was like
• 30:05winning the shit lottery.
• 30:09Adding to the irony is
• 30:10that before getting PSP, Linda
• 30:12was probably the healthiest person
• 30:14I knew. She understood nutrition.
• 30:16She knew about exercise.
• 30:18She knew about
• 30:19sunscreen.
• 30:20She didn't smoke or drink,
• 30:22although she did her fair
• 30:23share of both of those
• 30:24before we met.
• 30:25She did Pilates.
• 30:27She meditated. She did yoga.
• 30:29She looked twenty years younger
• 30:30than she was. And as
• 30:32a bonus, she had great
• 30:33posture,
• 30:34a dancer's posture, which annoyed
• 30:37the hell out of me
• 30:38because my resting posture is
• 30:40pretty much that of a
• 30:41question mark.
• 30:44Anyway, her normal baseline was
• 30:45so healthy going in that
• 30:47when this thing hit, even
• 30:48though it would ultimately crush
• 30:49her, she was in better
• 30:51shape than most any other
• 30:52PSP afflicted person I'd heard
• 30:54of or read about in
• 30:56the same stage of illness.
• 30:59Linda had been working out
• 31:00with the same personal trainer
• 31:02for sixteen years.
• 31:03And up until a month
• 31:04before she died, I was
• 31:05still taking her for her
• 31:07weekly workouts.
• 31:08She worked with free weights,
• 31:09resistance bands, stretching,
• 31:12everything, just less than what
• 31:13she did before. I was
• 31:15so proud of her.
• 31:18As the Mack truck got
• 31:19closer, I found myself taking
• 31:21stock of how to find
• 31:22the positive side of our
• 31:23situation
• 31:24in the face of so
• 31:25much emotional upheaval.
• 31:28Here's a little affirmation I
• 31:29came up with that sometimes
• 31:30helped me maintain perspective.
• 31:33I knew that among people
• 31:34who had lost loved a
• 31:36loved one, a common mantra
• 31:38was,
• 31:38I wish I could have
• 31:40her back for one more
• 31:42day.
• 31:44Just to hold her hand,
• 31:45just to say I love
• 31:46you again, just to embrace
• 31:48her once more, just
• 31:50one more
• 31:53day. For the time being,
• 31:55Linda was still with me
• 31:57no matter how diminished.
• 31:59So I try to remind
• 32:00myself that every day I
• 32:01woke up with her was
• 32:03another
• 32:04one more day,
• 32:06and that those one more
• 32:07days were always adding up.
• 32:12Of course, that's me at
• 32:13my best.
• 32:14My more predominant nature comes
• 32:16out when well meaning people
• 32:18tell me that Linda will
• 32:19always live on in my
• 32:20heart.
• 32:21My natural response, whether spoken
• 32:23or not, is that's not
• 32:24good enough.
• 32:26To paraphrase an old Woody
• 32:27Allen joke, I don't want
• 32:28her to live on in
• 32:29my heart. I want her
• 32:30to live on in our
• 32:31living room.
• 32:34Earlier, I mentioned my failings
• 32:36as Linda's caregiver, and it
• 32:38would be dishonest of me
• 32:39not to address this very
• 32:41common occurrence of the caregiving
• 32:42experience.
• 32:45At least you jump the
• 32:46gun and nominate me for
• 32:47canonization.
• 32:50There are good many support
• 32:51groups on Facebook for any
• 32:52number of these neurological diseases,
• 32:54and there are numerous points
• 32:56upon which there is a
• 32:57kind of universal consensus.
• 33:00One topic that comes up
• 33:01again and again among family
• 33:03members is guilt and regret
• 33:06for losing patience with your
• 33:07loved one.
• 33:09If you are taking care
• 33:10of someone, it will happen
• 33:13more than once.
• 33:14I'm not talking about the
• 33:15professional caregiver,
• 33:17but for those of us
• 33:18who find ourselves caring for
• 33:19a loved one.
• 33:22At best, your daily life
• 33:23is filled with stress.
• 33:25You feel like you're hanging
• 33:26on by a thread
• 33:28and that any straw can
• 33:29be the last one.
• 33:31Still, you maintain your composure
• 33:33because it's not about you.
• 33:36As bleak as life feels
• 33:37to you at times, you're
• 33:38the one who has to
• 33:39always remain positive and cheerful
• 33:41so that your loved one
• 33:42doesn't receive the wrong cues.
• 33:45It's like when you're on
• 33:46an airplane and you hit
• 33:47very bad turbulence and your
• 33:49fingernails are digging into the
• 33:50armrests,
• 33:52and,
• 33:54the ride is getting bumpy,
• 33:55and,
• 33:56now you're wishing that you
• 33:57had taken that Xanax upon
• 33:59takeoff.
• 34:01And the flight attendant calmly
• 34:02walks up to you and
• 34:03says, I'm sorry. We're all
• 34:05out of the lasagna. Would
• 34:06you like the chicken tenders?
• 34:08You think, first of all,
• 34:10why does this always happen
• 34:12to me?
• 34:14Every time.
• 34:16But you also know that
• 34:17if she's not panicking,
• 34:18maybe this turbulence is nothing
• 34:20to worry about.
• 34:21You have to always be
• 34:23that flight attendant for your
• 34:24loved one.
• 34:27As difficult as my days
• 34:28were, I was always grateful
• 34:29that I was a good
• 34:30sleeper and could recharge my
• 34:32batteries at night.
• 34:33But as Linda's illness progressed
• 34:35and her sleep her sleep
• 34:36was disturbed and she was
• 34:37fidgety in bed and there
• 34:39were repeated trips to the
• 34:40bathroom,
• 34:41we entered a new realm.
• 34:43And if you've ever had
• 34:44children,
• 34:45you already know that there
• 34:46are two words that will
• 34:47cause
• 34:48cause any sane person to
• 34:49lose their shit. I don't
• 34:51care if you're Mahatma Gandhi.
• 34:54And those two words are
• 34:56sleep
• 34:57deprivation.
• 35:00This was my kryptonite.
• 35:03There are times when I
• 35:04was
• 35:07impatient with Linda,
• 35:09times I raised my voice,
• 35:11even yelled at her.
• 35:15There were times I said
• 35:16mean things to her and
• 35:17was even physically rougher than
• 35:19I should have been.
• 35:22I remember one time actually
• 35:23yelling at her.
• 35:25What is wrong with you?
• 35:27Well, of course, the answer
• 35:28was through no fault of
• 35:29her own that she had
• 35:30a brain disease
• 35:31that was causing behavior over
• 35:33which she had no control.
• 35:35That's what was wrong with
• 35:36her.
• 35:42I will say that for
• 35:43each outburst I had, I
• 35:44would always soon apologize,
• 35:47hold her, and tell her
• 35:48it was not her fault.
• 35:51Despite these verbal reparations,
• 35:53losing patients with her, exhibiting
• 35:55moments of behavior for which
• 35:57I would fire a professional
• 35:58caregiver in a second,
• 36:00is part of this experience
• 36:02that most sticks in my
• 36:03craw today.
• 36:04And I assure you, this
• 36:06sentiment is voiced by almost
• 36:08every person
• 36:09who contributes to these support
• 36:10groups.
• 36:12And I'm also sorry to
• 36:13tell you,
• 36:14knowing that we're all only
• 36:16human,
• 36:16that none of us are
• 36:17robots or supermen,
• 36:19and that this is such
• 36:20a common experience does not
• 36:22make that remorse go away.
• 36:26So I choose simply to
• 36:27attempt
• 36:28to
• 36:30so I choose simply not
• 36:31to attempt
• 36:32to minimize the residual pain
• 36:34or subscribe to any form
• 36:36of therapy to exercise my
• 36:38shame. I simply acknowledge it,
• 36:40take responsibility,
• 36:42cry when I have to,
• 36:43I'll apologize
• 36:45out loud to her when
• 36:46I have to, and I
• 36:47keep moving forward.
• 36:52Before I finish confessing what
• 36:54a jerk I am, I'll
• 36:55tell you of a slightly
• 36:56lesser regret.
• 36:58I forget where I first
• 36:59came across this gender stereotype
• 37:01about problems,
• 37:02but I heard I once
• 37:03heard someone say, when it
• 37:05comes to problems,
• 37:06men want to fix the
• 37:08problem.
• 37:09Women want to talk about
• 37:10the problem.
• 37:13You can decide whether you
• 37:14find a hint of truth
• 37:15in this trope. I will
• 37:16tell you that as a
• 37:17male,
• 37:19pronouns he, him,
• 37:20yes, I want to fix
• 37:22the problem.
• 37:23I want to whine about
• 37:24it for a full day,
• 37:26but then I want to
• 37:27fix it.
• 37:29I mentioned the dignity Linda
• 37:31exhibited when each of her
• 37:32abilities was taken away from
• 37:33her.
• 37:35One of the things Linda
• 37:36traditionally did on her household
• 37:37was pay the bills and
• 37:38reconcile the checkbook.
• 37:40Our check register would become
• 37:42a kind of written record
• 37:43of the advancement of Linda's
• 37:44illness
• 37:45because she used to have
• 37:47the most beautiful penmanship.
• 37:50But between the years two
• 37:51thousand seventeen and two thousand
• 37:53twenty,
• 37:54you see her writing become
• 37:56more and more illegible.
• 37:58It was amazing to me
• 37:59that she could still do
• 38:00the math,
• 38:01but I realized if her
• 38:02writing in the register was
• 38:03becoming so hard to read,
• 38:05she must be sending out
• 38:06checks that could barely be
• 38:07deciphered.
• 38:08A A few here that
• 38:09are legible are my own
• 38:10entries, although my writing isn't
• 38:12much better.
• 38:14So I sat down with
• 38:15her one day with the
• 38:16register and showed her the
• 38:18problem.
• 38:20Honey, I said,
• 38:22I think I need to
• 38:23take over paying the bills
• 38:25because your writing is becoming
• 38:26really hard to read.
• 38:28She simply nodded,
• 38:30acknowledging it was a good
• 38:31idea.
• 38:33You'd think I made a
• 38:34clean emotional getaway, but here's
• 38:36what I realized
• 38:38a little too late.
• 38:41Linda was aware that her
• 38:42writing had fallen apart.
• 38:47And I know she took
• 38:48pride
• 38:49in how beautiful
• 38:51her writing had once been,
• 38:54How painful it must have
• 38:55been to lose control
• 38:57of yet one more thing
• 38:59and then to be fired,
• 39:01so to speak,
• 39:02from a job she had
• 39:03done so well for so
• 39:04long.
• 39:06But I wasn't considering that
• 39:08at the time.
• 39:09I just thought, here is
• 39:11a problem.
• 39:12I will fix it.
• 39:15Here's what I forgot to
• 39:16do.
• 39:17I forgot to take her
• 39:18hand and say,
• 39:20I'll bet this must be
• 39:21very painful to you
• 39:24to not be able to
• 39:25do this anymore.
• 39:27I'm sure it makes you
• 39:28sad.
• 39:29There's so much
• 39:31you've had to give up.
• 39:33I forgot to simply say,
• 39:36I understand.
• 39:40These are two words that
• 39:41all of us long to
• 39:42hear and may ultimately be
• 39:44more important than I love
• 39:45you.
• 39:47I'm not big on dispensing
• 39:49advice,
• 39:49but I'll let this tidbit
• 39:51fly.
• 39:51If you're ever in this
• 39:53unfortunate position of caregiving for
• 39:54a loved one,
• 39:56remember to not only say
• 39:57I understand,
• 39:59but to take the time
• 40:00to actually understand.
• 40:03See, it's good for men
• 40:04to talk about the problem
• 40:06too.
• 40:07I'm told it's not even
• 40:08a bad idea to use
• 40:09these words on someone who
• 40:10isn't sick.
• 40:14Time for another snapshot,
• 40:16in fact, on the subject
• 40:17of regret. Give me one
• 40:18second. I'll be right back.
• 40:26I was once telling Linda
• 40:28about some minor regret from
• 40:29my past, something I wish
• 40:31I had handled differently.
• 40:34She consoled me in her
• 40:35usual sage philosophical manner.
• 40:38Well, honey, she reminded me,
• 40:40hindsight is thirty thirty.
• 40:45I think she was accounting
• 40:47for inflation.
• 40:49Yeah. She often played, Gracie
• 40:51Allen to my George Burns,
• 40:53a reference that you young
• 40:54people can Google.
• 40:58My understanding is that the
• 40:59most
• 41:00is that the two most
• 41:01common causes of death for
• 41:02people with PSP are falls
• 41:05and aspiration.
• 41:08Between her hired caregiver and
• 41:09myself, Linda never took a
• 41:11step on her own, so
• 41:11falls were taken care of.
• 41:14But sure enough, she would
• 41:15aspirate on December sixth two
• 41:17thousand twenty two while she
• 41:18was eating,
• 41:19leading to our first nine
• 41:20one one call and her
• 41:22first trip to the hospital.
• 41:24She'd come home on December
• 41:25seventeenth.
• 41:27Hospice care started the next
• 41:28day.
• 41:29She lived for another week.
• 41:33When my mother was in
• 41:34her final year of life,
• 41:36most every weekend, I made
• 41:37the fifty mile trek from
• 41:39our home to my mother's
• 41:40my mother's assisted living facility.
• 41:42It was a schlep and
• 41:44not always fun. And every
• 41:45weekend, I told Linda she
• 41:47didn't have to come with
• 41:48me.
• 41:49She could stay home and
• 41:50relax.
• 41:51But every single weekend, she'd
• 41:54accompany me to see my
• 41:55mother.
• 41:57On the way home from
• 41:58one of these trips, she
• 41:59said to me rather matter
• 42:00of factly,
• 42:02when my time comes, I
• 42:03just wanna go out on
• 42:05a cloud of morphine.
• 42:08It was only six years
• 42:09after my mother's passing, and
• 42:10here I was administering morphine
• 42:10orally to my wife. Even
• 42:10though I
• 42:11kind of guilt associated with
• 42:12it as I felt
• 42:13like I was willingly giving
• 42:14my wife something that would
• 42:15aid in her death.
• 42:27At those times, I was
• 42:28so thankful for what she
• 42:30said to me in that
• 42:30car that that day six
• 42:32years earlier.
• 42:34I could comfort myself knowing
• 42:35that I was literally carrying
• 42:36out her wishes,
• 42:38sending her out on a
• 42:39cloud of morphine,
• 42:41something that I now wish
• 42:42for myself.
• 42:43I'll tell you this in
• 42:44case any of you are
• 42:45at bedside, you know,
• 42:47when is my time.
• 42:49Medical directives are essential,
• 42:51but also just tell your
• 42:52loved one what you want.
• 42:55Don't forget.
• 42:58Maybe two or three months
• 42:59earlier,
• 43:00I wanted some insight into
• 43:02Linda's frame of mind that
• 43:03I knew would be too
• 43:04complex for her to communicate
• 43:06beyond beyond simply pointing her
• 43:08finger.
• 43:10So one evening, I marked
• 43:12up a sheet of paper
• 43:13and posed a question to
• 43:14her.
• 43:15When you think about your
• 43:17own passing,
• 43:18which of these words best
• 43:19describes how you feel?
• 43:22Then I showed her the
• 43:23paper.
• 43:24On top, I'd written scared.
• 43:27On the bottom, at peace.
• 43:30She confidently
• 43:33pointed to at peace.
• 43:37Hopefully, you know some basic
• 43:38Hebrew when I tell you
• 43:39this was the greatest mitzvah
• 43:40she could have done for
• 43:41me.
• 43:45And before I wrap this
• 43:46up, here's my final
• 43:48Linda snapshot for tonight.
• 43:51One year, the Perseid meteor
• 43:52showers were supposed to be
• 43:54especially brilliant on a certain
• 43:55night,
• 43:56and I was determined we'd
• 43:57watch for them.
• 44:01We stepped out onto our
• 44:03front lawn at nightfall,
• 44:05and I asked if she
• 44:06knew what direction we were
• 44:07supposed to look.
• 44:09She answered,
• 44:10up.
• 44:14It was Christmas Day two
• 44:16thousand twenty two.
• 44:18It was peaceful.
• 44:19The phone wasn't ringing.
• 44:22She was in a rented
• 44:23hospital bed in our bedroom
• 44:25and in my arms,
• 44:26and she simply stopped breathing.
• 44:30Here's another piece of advice
• 44:32for you all.
• 44:33If you must die,
• 44:35try to do it in
• 44:36the arms of someone who
• 44:37loves you.
• 44:39It definitely helps.
• 44:42People often feel especially bad
• 44:44about it happening on Christmas
• 44:46until I remind them that
• 44:47it's the most peaceful day
• 44:48of the year.
• 44:49It's so quiet.
• 44:52Also, we're secular Jews. So,
• 44:53you
• 44:55know, I didn't get my
• 44:56Chinese dinner that night.
• 45:00I do feel envious of
• 45:01people who know that when
• 45:02they die, they're going to
• 45:03be with God or Jesus
• 45:06or reunited with family members
• 45:07or loved ones or pets.
• 45:10I hope a lot of
• 45:10these same things for myself.
• 45:13I also hope that when
• 45:14I go, I get back
• 45:15all the scarves and sunglasses
• 45:17and hats and umbrellas and
• 45:18socks that went missing over
• 45:19the years.
• 45:21But if your own jury
• 45:22is out on the whole
• 45:23question of a spiritual afterlife,
• 45:26and you are determined not
• 45:27to tell your departing loved
• 45:28one anything you don't fully
• 45:29believe to be true,
• 45:32when faced with that awesome
• 45:33responsibility
• 45:34of providing the final words
• 45:36she will ever hear,
• 45:37what words do you choose
• 45:39to put in her ear?
• 45:42Here's what I chose to
• 45:43say.
• 45:46I'm here with you,
• 45:47sweetheart.
• 45:49There's nothing to be afraid
• 45:50of.
• 45:51You can relax now.
• 45:54Wherever you go,
• 45:55I'll go there too.
• 45:59You'll always be with me.
• 46:02Please don't forget me.
• 46:06I'll also tell you this.
• 46:08In her final hours, I
• 46:09played music for her that
• 46:11was meaningful to us.
• 46:12Among the songs I played
• 46:14was Frank Sinatra's Come Fly
• 46:15With Me.
• 46:17Sweetheart, I whispered in her
• 46:18ear.
• 46:20They're playing our song.
• 46:24And here is my favorite
• 46:25lyric from that song that
• 46:26we first danced to
• 46:29on our wedding day almost
• 46:30a quarter century earlier.
• 46:34When I get you up
• 46:35there,
• 46:37I'll be holding you so
• 46:38near.
• 46:40You may hear
• 46:42all the angels cheer
• 46:44because we're together.
• 46:48Finally, let me say this
• 46:49about Linda.
• 46:51If you did not know
• 46:52her,
• 46:53I'm sorry for your loss.
• 46:56Thank you.
• 47:17Then I wanna Oh, everyone's
• 47:18a director.
• 47:20I gotcha.
• 47:21And
• 47:22the sound man. Better? Yeah.
• 47:24It's a good week. Let
• 47:25me see who am I
• 47:26gonna who's my volunteer to
• 47:27tell me back there and
• 47:28how we're doing. From back
• 47:29there, you let me know.
• 47:29I'm gonna take one of
• 47:30these if I could.
• 47:32So
• 47:36what will
• 47:39So what we'll do I'll
• 47:40slide it up a little
• 47:41higher on my Oh, okay.
• 47:42Wize again.
• 47:45So one
• 47:49of
• 47:51one of the
• 47:52privileges
• 47:53slash responsibilities
• 47:54for physicians and nurses and
• 47:56others who,
• 47:58for a living,
• 47:59care for people who
• 48:00are sick or at their
• 48:01most vulnerable,
• 48:03is that we,
• 48:05we get to look into
• 48:06intimate,
• 48:07aspects of people's lives that
• 48:09otherwise we wouldn't get.
• 48:11And it is,
• 48:13I feel like that's certainly
• 48:15something we got this evening
• 48:16from you, Bob. And I
• 48:17I
• 48:18I'm truly grateful,
• 48:20for the way you've opened
• 48:21up,
• 48:23and the stories you told
• 48:24and
• 48:26and what you helped us
• 48:27understand. Because in the end,
• 48:29I'm not okay. So I'm
• 48:30the problem here. Should I
• 48:31get closer to his mic
• 48:32or my mic? In the
• 48:33end,
• 48:34what we're all doing here,
• 48:36I think you know, is
• 48:38we're trying to figure out
• 48:40ways to do a better
• 48:42job of taking care of
• 48:43people who are sick
• 48:44and also taking care of
• 48:46the people who take care
• 48:47of people who are sick.
• 48:49I think that that everybody
• 48:51in the room comes away
• 48:52knowing a little bit more
• 48:53about that and seeing that
• 48:55a bit from the inside.
• 48:56I wanna ask you a
• 48:57few questions, and then I'm
• 48:58gonna invite members of the
• 48:59audience, to to also ask
• 49:01a few questions.
• 49:02But,
• 49:03I mean, a a couple
• 49:04of things that that came
• 49:05through this, and I and
• 49:06I at some point,
• 49:08Well, let me start let
• 49:09me start with an an
• 49:11easier easier one that Sinatra
• 49:13found his way into early
• 49:14in the talk and then
• 49:15later on, and it was
• 49:16really quite beautiful. And and
• 49:18there was also she was
• 49:19obviously pretty funny, and you
• 49:20could even possibly make a
• 49:22living at it if you
• 49:22if you really give it
• 49:24a go. Stick to it.
• 49:25Yeah.
• 49:26So so
• 49:28talk to me about music
• 49:29and humor, and was that
• 49:31part of your journey before
• 49:32Linda was sick, while Linda
• 49:34was sick? Always. Well, if
• 49:35you're married to me, there's
• 49:37gonna be a lot of
• 49:38jokes and a lot of
• 49:39silliness.
• 49:40And
• 49:41her laugh,
• 49:42the fact that she was
• 49:43an easy laugh, meaning not
• 49:45that she laughed at everything,
• 49:46but that her laugh had
• 49:47an ease to it, was
• 49:49a big attraction.
• 49:52Anyway, so, yeah, we were
• 49:55we were funny.
• 49:57We were
• 49:58yes. There were a lot
• 49:59of laughs in the house
• 50:00even when she was ill.
• 50:02I was thinking today about
• 50:03something she said, and this
• 50:05is this is sort of
• 50:05a I I don't wanna
• 50:06not look at you. You're
• 50:08fine. You're fine.
• 50:10A kind of gallows humor
• 50:11that took over. She
• 50:14she announced when she was
• 50:15still
• 50:16walking and talking, she had
• 50:18given it some thought. And
• 50:19she had said
• 50:20that she decided she wanted
• 50:22to donate her brain for
• 50:23scientific research in PSP,
• 50:26which make people in the
• 50:27medical field very happy.
• 50:29And,
• 50:30we were having lunch when
• 50:32she said this. So the
• 50:33first thing I said is,
• 50:33okay, but can we discuss
• 50:34this after lunch?
• 50:36And she chuckled, and she
• 50:37said,
• 50:39you know, I on top
• 50:41of whatever good it'll do,
• 50:42I've always had this this
• 50:45irrational
• 50:46fear about being
• 50:49buried
• 50:50before I'm completely
• 50:52dead
• 50:53and
• 50:54waking up in the casket.
• 50:55And she said, if they
• 50:56take my brain, that takes
• 50:57care of that.
• 50:59And I said, well, sweetheart,
• 51:01you know, there's one thing
• 51:03worse than waking up in
• 51:04a
• 51:05casket when you're alive. She
• 51:07said, what's that? I said,
• 51:08waking up in a casket
• 51:09with no brain.
• 51:13This was not atypical for
• 51:14us.
• 51:15So,
• 51:16yeah, humor humor was always
• 51:18there. I I I won't
• 51:19go into this because it's
• 51:21it's just I don't wanna
• 51:22spend the time. But I
• 51:23actually remember the last thing
• 51:24I said that made her
• 51:25laugh in bed that last
• 51:26week. Well, it was just
• 51:29he just gestured me to
• 51:31tell it. Otherwise, I wouldn't
• 51:32bother with it. She was,
• 51:33you know, in this rented
• 51:34hospital bed in our bedroom
• 51:35with, you know, surrounded by
• 51:37pillows,
• 51:38you know, pillows for arm,
• 51:39pillows for head, pillows so,
• 51:41you know, I could
• 51:43change her and move her
• 51:44and all that. And at
• 51:45one point, she,
• 51:46just started, like, pulling off
• 51:48the pillows. And I said,
• 51:50sweetheart,
• 51:51these pillows were
• 51:52placed here by pillow experts
• 51:55who know exactly where each
• 51:57pillow goes. You can't just
• 51:58start throwing them around. You
• 52:00didn't study pillow placement. You're
• 52:01not a pillow expert. How
• 52:02are these people gonna feel?
• 52:03They come in and say
• 52:04you've moved all the pillows.
• 52:05And she smiled,
• 52:07and there's a little bit
• 52:08of a chuckle. And that
• 52:09was the that was the
• 52:10final
• 52:11the final joke.
• 52:12Now with regard to humor
• 52:14with regard to music,
• 52:17you learn just by the
• 52:17Sinatra reference that
• 52:19we both love old school
• 52:21stuff, American standards,
• 52:23Sinatra,
• 52:24Tony Bennett,
• 52:26Ella Fitzgerald,
• 52:27Billie Holiday. So that was
• 52:29the music that filled our
• 52:30house, and there are all
• 52:30kinds of satellite stations that
• 52:31play old muse. So it
• 52:33music like that was always
• 52:34playing.
• 52:35And,
• 52:37we were particularly fond of
• 52:39Sinatra.
• 52:39And,
• 52:41so
• 52:42at the end of the
• 52:43day,
• 52:44when she'd be sitting on
• 52:45the couch
• 52:46watching TV and I would
• 52:47need to physically,
• 52:49you know, help her to
• 52:50bed, and we'd sort of
• 52:51do this, like, little dance
• 52:53to to get her to
• 52:54the bed.
• 52:55Music was playing, and I
• 52:56just stopped. And I
• 52:58I looked at her, and
• 52:59I said,
• 53:00you know,
• 53:01our act three is really
• 53:03stinking up the joint, but,
• 53:04god, the music is great.
• 53:07So, yeah, it was very
• 53:08important to us.
• 53:12You you didn't again, in
• 53:13in along the lines of
• 53:15trying to get better at
• 53:16what we do, this is
• 53:17a question that we sometimes
• 53:18ask families. And I'm gonna
• 53:19ask you, it's it's
• 53:21it's relevant, though not original.
• 53:22And the question is, so
• 53:23you spend a lot of
• 53:24time interacting, no doubt, with,
• 53:27medical professionals, and you didn't
• 53:28talk that much about that.
• 53:29But I wanna talk about
• 53:30that a little bit. And
• 53:32to think about if you
• 53:33can think of,
• 53:35what was the dumbest or
• 53:37you know, I so when
• 53:38I was in the hospital
• 53:39some years ago,
• 53:40my son laughed about he
• 53:42said, you know, I'm amazed
• 53:43at the stupid things people
• 53:44say to you when I
• 53:45was kind of out of
• 53:46it on drugs. And and
• 53:47I so I started keeping
• 53:48track of the stupid things
• 53:49people said to me. The
• 53:50nurses or doctors said to
• 53:52me, and it's pretty funny.
• 53:52I found them on my
• 53:53phone when I woke up,
• 53:54like, some months later. Say,
• 53:55look at that stuff. I
• 53:56mean, I mean, when that
• 53:57when I woke up and
• 53:57when I I I was
• 53:58kinda delirious when I was
• 53:59writing this stuff down. But
• 54:01professionals say some really stupid
• 54:03things to patients and families.
• 54:05I'm interested to know if
• 54:06you remember any of that
• 54:07or or certainly more importantly
• 54:08than just the stupid things
• 54:09we say, but maybe the
• 54:11hurtful things that we say.
• 54:14No.
• 54:15No.
• 54:18No. My experience in that
• 54:19regard was
• 54:21all very good.
• 54:23That final month when she
• 54:24went into the hospital,
• 54:26the first hospital that she
• 54:27went to,
• 54:28I wasn't crazy about. We
• 54:30went because it was in
• 54:31the middle of the pandemic
• 54:33or maybe sort of things
• 54:34had calmed down, and then
• 54:35we're sort of lifting up
• 54:36again. But the the hospital
• 54:38ERs were full and people
• 54:40out in the corridors and
• 54:41everybody wearing masks and people
• 54:43outside.
• 54:44And,
• 54:47but she had aspirated. So,
• 54:49fortunately, because she went there
• 54:50in an ambulance, she got
• 54:51to cut ahead of
• 54:54a lot of that. There
• 54:54are a couple times we
• 54:54spent ERs, and I said
• 54:55never again.
• 54:58It was brutal.
• 54:59But in any event, what
• 55:00I'm leading up to is
• 55:01that so she checked into
• 55:02that hospital, and she was
• 55:03gonna get a g tube.
• 55:05Now I knew that the
• 55:06g tube surgery was going
• 55:08to be coming up before
• 55:08too long. And she had
• 55:10a gastro doctor that we
• 55:11liked, and she was gonna
• 55:12perform,
• 55:13the g tube surgery.
• 55:15But when we were at
• 55:16this first hospital,
• 55:19you know, after they had
• 55:20sort of gotten her through,
• 55:21you know, the aspiration
• 55:24and she was kinda settling
• 55:25in,
• 55:26I told them that I
• 55:27was gonna be moving her
• 55:28to this hospital to get
• 55:29the g tubes
• 55:30from her doctor.
• 55:32And there's a doctor there
• 55:33that said, oh, we do
• 55:34those here. We do them
• 55:35all the time.
• 55:38I'd rather her be with
• 55:39the doctor who knows her
• 55:40history, who knows her and
• 55:42all that.
• 55:43And there was a nurse
• 55:44there. I love finding, like,
• 55:46a nurse
• 55:47who, like, you can take
• 55:48into your confidence. She'll be
• 55:49really honest with you. And,
• 55:51also, then if something happens,
• 55:52like, you know, her thing's
• 55:53been buzzing for twenty minutes
• 55:54and no one's come. If
• 55:55you make that connection, that's
• 55:56great. So this this nurse
• 55:58was really helpful.
• 55:59And I told her about
• 56:01the offer from this hospital.
• 56:02We can do it here.
• 56:04And I had sensed almost
• 56:06an assembly line mentality to
• 56:08it, whereas her doctor knew
• 56:10her. And I
• 56:11so I mentioned this
• 56:13conundrum to the nurse, and
• 56:14she said to me,
• 56:16have your doctor do it
• 56:17at the other place.
• 56:20I appreciated that honesty. I
• 56:22really did.
• 56:23She says, I've been here
• 56:25too long. I know too
• 56:25much.
• 56:28Now that doesn't mean it
• 56:29was a disaster,
• 56:31but
• 56:32she just knew that my
• 56:33wife was better off, and
• 56:34she could see our connection
• 56:35because I never left her
• 56:36bedside. I mean, I go
• 56:37home to sleep for a
• 56:37few hours, then I come
• 56:38back. So she saw what
• 56:39she meant to me, and
• 56:40she was giving me her
• 56:41honest input. So that's on
• 56:42the on the positive side.
• 56:44And, you know, there are
• 56:45incidents like that. But, no,
• 56:46there's nothing that
• 56:48that,
• 56:49I can look back and
• 56:50say, that bastard. You know,
• 56:51the misdiagnosis,
• 56:53I'm not crazy about. But
• 56:54but even that wasn't too
• 56:57upsetting because when you when
• 56:58you're talking about progressive illnesses,
• 57:00it's not like, oh, if
• 57:01only we had known it
• 57:02was PSP instead of PPA,
• 57:03we could have done this.
• 57:04Well, it's all the same.
• 57:06You know? You you make
• 57:07them comfortable and and and
• 57:08happy, and there's no real
• 57:10treatment for any of these.
• 57:12But as I said, I
• 57:13was very relieved
• 57:15very relieved. I mean, I
• 57:16was relatively relieved to find
• 57:18out that this was PSP
• 57:19because that's not a form
• 57:20of dementia, and that made
• 57:21a big difference.
• 57:22But but that made the
• 57:24that misdiagnosis
• 57:25should not have happened because
• 57:27there are specific tests for
• 57:29PSP that
• 57:30pretty clearly tell you that's
• 57:31what's going on. And this
• 57:32was a very respected neurologist
• 57:34who somehow missed it, but
• 57:36I wasn't even upset with
• 57:37him because it wouldn't have
• 57:38changed anything.
• 57:41You mentioned something about the
• 57:42emergency room, and some of
• 57:43the trips were brutal. That
• 57:44was that about the waiting
• 57:45time? Yeah. Yeah. Yeah. And
• 57:47that's that's She had,
• 57:49something about PSP. I haven't
• 57:50heard people talk about this,
• 57:51but I think it dulls
• 57:53your sense of pain a
• 57:54little bit because she had
• 57:56injured herself in ways
• 57:57I see somebody nodding. She'd
• 57:59injured herself in ways that
• 58:00would leave a lot of
• 58:01people screaming, and she,
• 58:03like, sliced her
• 58:04arm open in this kind
• 58:06of freak accident.
• 58:07And
• 58:08she was still talking and
• 58:09walking at this time, and
• 58:11I, for a while, was
• 58:11sleeping in a different room
• 58:12because
• 58:13she was keeping me up
• 58:14all night and needed to
• 58:15get my sleep, and she
• 58:16was fine. So she walked
• 58:17in the room, and she
• 58:17said
• 58:19at first, she saw me
• 58:20sleeping, and she said, no.
• 58:21And she went back to
• 58:21bed. Then she came out
• 58:22a little while later, and
• 58:23she said, I I cut
• 58:25myself. I thought you should
• 58:26see it. And I looked,
• 58:27and you could see muscle.
• 58:28I mean, it was like
• 58:28she had taken a razor
• 58:29blade.
• 58:31And I said, okay. We're
• 58:32going to the ER.
• 58:33And
• 58:35it was a good eight
• 58:35hours before anybody would see
• 58:37her. It wasn't bleeding.
• 58:40Doctors would understand why. I
• 58:41don't. I would expect it,
• 58:43but she was there with
• 58:44this big gash on her
• 58:45arm. But
• 58:46other people probably was more
• 58:48of an emergency situation, but
• 58:50I just said I'm I'm
• 58:50not and by the way
• 58:51and, again, this was in
• 58:53the middle of the night,
• 58:54like, starting at two in
• 58:55the morning with people coughing
• 58:57and hacking. And
• 58:59I said, you know, if
• 58:59that happens again, she's she
• 59:01can just stay home and
• 59:01die.
• 59:03That sounds brutal, but that
• 59:04was that was my honest
• 59:05reaction.
• 59:06I mean, not for that.
• 59:06That you get sewn up,
• 59:07but, you know No. I
• 59:08get I I I get
• 59:10what you mean. But you
• 59:11mentioned about, you know, sleep
• 59:13deprivation. You talked about having
• 59:14to get your rest at
• 59:15night. So,
• 59:17you know, some of us
• 59:18are familiar with some of
• 59:19your work, which is,
• 59:20you know,
• 59:22brilliant. Induces sleep? Which induces
• 59:25sleep. That's not what I
• 59:26had in mind. It might.
• 59:27I don't know. Some of
• 59:27the stuff I watched didn't
• 59:29induce sleep, but but I'll
• 59:30tell you,
• 59:31that I'm interested to know
• 59:32because, again, we try and
• 59:33put ourselves in the shoes
• 59:34of the caregivers a little
• 59:35bit. Tell me about your
• 59:36work while you were taking
• 59:38Carolinda. What did how did
• 59:39that work out? Well, again,
• 59:41I'm lucky that, as I
• 59:42say, I don't have a
• 59:43real job. I didn't have
• 59:44to be in an office
• 59:45every day.
• 59:48You know, and curb Kirby
• 59:50enthusiasm
• 59:50was we had these long
• 59:52hiatuses between seasons.
• 59:54And,
• 59:56so I remember directing an
• 59:57episode when she was, like,
• 59:58okay at home with a
• 59:59caregiver.
• 01:00:01And then by the next
• 01:00:02time I had an episode
• 01:00:03come up was actually soon
• 01:00:05after she had passed.
• 01:00:06But,
• 01:00:07and I had to sort
• 01:00:08of pull myself together for
• 01:00:09that. But what I was
• 01:00:11working on the entire time
• 01:00:12she was sick was my,
• 01:00:14documentary on, Kurt Vonnegut, the
• 01:00:15author,
• 01:00:16which actually took me thirty
• 01:00:17nine years to make.
• 01:00:19Started in nineteen eighty two.
• 01:00:20I finished it in two
• 01:00:21thousand twenty one.
• 01:00:23So
• 01:00:24I was trying to finish
• 01:00:25this film as she was
• 01:00:26getting progressively sicker. And at
• 01:00:28a time, it looked like
• 01:00:30it was a race as
• 01:00:32to whether the film would
• 01:00:32be finished before she was
• 01:00:34gone.
• 01:00:35But even that, a lot
• 01:00:36of my work I could
• 01:00:36do out of my house.
• 01:00:37I did have an outside
• 01:00:38office, but it was literally
• 01:00:39down the street. I can
• 01:00:41walk there and be there
• 01:00:41in three minutes. By this
• 01:00:43time, I could have a
• 01:00:43caregiver there sometimes.
• 01:00:46So I was working. Now
• 01:00:47what's interesting about that film
• 01:00:49and if you're interested, I'll
• 01:00:50I'll show you a two
• 01:00:51minute clip. By the way,
• 01:00:52if you're if if you're
• 01:00:53Kurt Vonnegut fans and you
• 01:00:54don't know about this film,
• 01:00:55it's on Hulu. It's called
• 01:00:57Kurt Vonnegut unstuck in time.
• 01:00:58It's also
• 01:00:59all the, you know, Amazon,
• 01:01:00all the place all the
• 01:01:01VOD
• 01:01:02things.
• 01:01:05But it started off as
• 01:01:06a conventional I don't wanna
• 01:01:08overanswer, but this all applies.
• 01:01:10It started off as a
• 01:01:11conventional documentary about an my
• 01:01:12favorite author.
• 01:01:14Over the course of making
• 01:01:15this film over decades, he
• 01:01:16and I became very, very
• 01:01:17close friends. He encouraged me
• 01:01:19to marry Linda because because
• 01:01:20he just thought she was
• 01:01:21the best and said, you
• 01:01:22know, when are you gonna
• 01:01:22marry that girl? Well, don't
• 01:01:23let her go. Don't let
• 01:01:24her go.
• 01:01:25So
• 01:01:26in any event and then
• 01:01:27he died in two thousand
• 01:01:28seven, and I was still
• 01:01:29working on the film.
• 01:01:31Linda was pretty sick by
• 01:01:32two thousand nineteen, two thousand
• 01:01:33twenty.
• 01:01:34And,
• 01:01:36but the film became this
• 01:01:37meta
• 01:01:38experiment of not only a
• 01:01:39biography of the author, but
• 01:01:41of the relationship between,
• 01:01:44filmmaker and subject because he
• 01:01:45and I grew close together.
• 01:01:46So in the name of
• 01:01:47full disclosure, I thought I
• 01:01:48can't avoid that. So that
• 01:01:49found its way into the
• 01:01:51tapestry of his biography.
• 01:01:53Now with Linda getting sick,
• 01:01:55I felt again,
• 01:01:56for the sake of full
• 01:01:57disclosure,
• 01:02:00do I mention that? How
• 01:02:01do I because it's about
• 01:02:02my life too now and
• 01:02:03my life now after
• 01:02:04and I thought,
• 01:02:06I I think I I
• 01:02:07have to include it. And
• 01:02:09I wasn't certain how, but
• 01:02:10I thought it had to
• 01:02:11be touched on.
• 01:02:12And
• 01:02:13so I said to Linda,
• 01:02:16how would you feel about
• 01:02:17me including
• 01:02:19this in the film? Let
• 01:02:20me check the time because
• 01:02:21you are a tyrant, the
• 01:02:22six thirty business. I know.
• 01:02:23We got we got plenty
• 01:02:24of time. Okay. I'll stretch
• 01:02:26it out. Stretch it out.
• 01:02:27So I said to her
• 01:02:29I said, you've been following
• 01:02:31the film. You know the
• 01:02:31biographical element. I
• 01:02:34I think it makes sense
• 01:02:35to sort of touch on
• 01:02:36this in a tasteful,
• 01:02:37non exploitive way.
• 01:02:39And she was resistant. She
• 01:02:41said, I don't know. I
• 01:02:42I want people seeing me
• 01:02:43this way. Meaning, she didn't
• 01:02:45look her best. She could
• 01:02:46you know, she was compromised.
• 01:02:47She wasn't walking well and
• 01:02:48all that.
• 01:02:49And I said, look, you
• 01:02:51trust me as your husband.
• 01:02:53You trust me as a
• 01:02:54filmmaker. She was my biggest
• 01:02:56fan.
• 01:02:57I said, if you can
• 01:02:58trust me as a husband
• 01:02:59and a filmmaker,
• 01:03:01let me film a couple
• 01:03:02of things
• 01:03:03to tell this part of
• 01:03:04the story. Put it in
• 01:03:05the film. I will show
• 01:03:06it to you. If you're
• 01:03:07uncomfortable, if you don't like
• 01:03:08it, out it goes. No
• 01:03:10questions asked.
• 01:03:11She agreed.
• 01:03:13So then I finally had
• 01:03:14a cut of the film.
• 01:03:17She watched it, and she
• 01:03:18just said, okay. I get
• 01:03:20it. Yeah. So we're gonna
• 01:03:21get to are we gonna
• 01:03:22get to see this? Yeah.
• 01:03:22Let me just tell you
• 01:03:23this quickly as a postscript
• 01:03:25is that
• 01:03:27the film I mean, she
• 01:03:29died on Christmas day two
• 01:03:31thousand twenty two. The film
• 01:03:32was finished,
• 01:03:33November two thousand twenty one.
• 01:03:35My goal was
• 01:03:37to finish this film,
• 01:03:38have a screening for friends
• 01:03:40and family that she would
• 01:03:41be at,
• 01:03:42and the film when it's
• 01:03:43over and it's dedicated to
• 01:03:45her. So the last thing
• 01:03:45you see is for Linda
• 01:03:48is that
• 01:03:49there would naturally be applause
• 01:03:51and I could stand her
• 01:03:52up
• 01:03:53and face the crowd and
• 01:03:55she could bow
• 01:03:57Bow. She could acknowledge them.
• 01:03:59And
• 01:04:00I I did it in
• 01:04:01time.
• 01:04:03So
• 01:04:04we've got this little clip
• 01:04:05to show you, and it
• 01:04:06it is the introduction. There
• 01:04:08Linda is throughout the film,
• 01:04:10but this is the introduction
• 01:04:11of the diagnosis of her
• 01:04:13disease. And it starts off
• 01:04:14with me getting an Emmy
• 01:04:16award, and you'll say, what
• 01:04:17kind of narcissistic bullshit is
• 01:04:19this? Why do we
• 01:04:20and you'll you'll you'll This
• 01:04:21is yeah. We live on
• 01:04:22narcissistic bullshit. Come on. I
• 01:04:23guess so.
• 01:04:26I saw that carved in
• 01:04:27stone above the commons, I
• 01:04:29think.
• 01:04:30But any event, this is
• 01:04:31about two two two and
• 01:04:33a quarter minutes. And,
• 01:04:35So Amir's gonna No. I
• 01:04:36might be distraction here. Let
• 01:04:37me just move over for
• 01:04:38a minute.
• 01:04:43And the Emmy goes to
• 01:04:45Up.
• 01:04:49Robert Whitey.
• 01:04:50Curb Your Enthusiasm.
• 01:04:55Hey, Ma. This is for
• 01:04:56you and for dad and
• 01:04:58for, my wife Linda to
• 01:04:59whom I just lost a
• 01:05:00one hundred dollar bet.
• 01:05:04Hi, Linda. This is Kurt.
• 01:05:06Just thinking about how happy
• 01:05:07you guys must be. My
• 01:05:08goodness. And how deservingly happy.
• 01:05:12Wow. When somebody's happy, I
• 01:05:14makes me happy too. So
• 01:05:16crazy about you too. I
• 01:05:17hope you love each other
• 01:05:18as much as I love
• 01:05:19both of you.
• 01:05:21Bye.
• 01:05:30In two thousand eighteen,
• 01:05:32Linda was diagnosed with progressive
• 01:05:35supranuclear
• 01:05:35palsy
• 01:05:36or PSP.
• 01:05:39Touch your nose, go back
• 01:05:40and forth,
• 01:05:41the other side. Neither of
• 01:05:43us had heard of it,
• 01:05:44but that's because it's very
• 01:05:45rare.
• 01:05:46It's
• 01:05:48sort of a cousin to
• 01:05:49Parkinson's,
• 01:05:50but very aggressive and very
• 01:05:52fast moving.
• 01:05:54Her speech, her balance,
• 01:05:56her walking have all taken
• 01:05:58a hit.
• 01:06:01There's no known cure,
• 01:06:03but she's participating in some
• 01:06:05clinical trials, which
• 01:06:07hopefully will provide some relief.
• 01:06:11We never saw this coming,
• 01:06:14but,
• 01:06:15you know,
• 01:06:16what do you ever see
• 01:06:17coming?
• 01:06:21Fate happens.
• 01:06:27Why me?
• 01:06:30That is a very earthling
• 01:06:31question to ask, mister Pilgrim.
• 01:06:34Why you? Why us for
• 01:06:36that matter? Why anything?
• 01:06:39Because this moment simply is.
• 01:06:42Have you ever seen bugs
• 01:06:44trapped in amber?
• 01:06:47Well, here we are, mister
• 01:06:48Pilgrim,
• 01:06:49trapped in the amber of
• 01:06:50this moment.
• 01:06:54There is no why.
• 01:07:07That that that passage at
• 01:07:09the end,
• 01:07:10is a, from Vonnegut's book
• 01:07:12slaughterhouse five. And the significance
• 01:07:14of the candlesticks, which is
• 01:07:15laid in earlier in the
• 01:07:16film, was actually his wedding
• 01:07:18gift to us,
• 01:07:19And we use them as
• 01:07:20our Shabbat candles
• 01:07:21on Friday night.
• 01:07:24When you and I first
• 01:07:25spoke, we discovered we had
• 01:07:26a number of things in
• 01:07:27common, including
• 01:07:29Kurt Vonnegut as a as
• 01:07:30a favorite author of our
• 01:07:31youth.
• 01:07:32So I I really appreciated
• 01:07:34that and do recommend, seriously.
• 01:07:37It's unstuck in time, I
• 01:07:38think, is in. Right? It's
• 01:07:39a it's a that's a
• 01:07:40documentary about Kurt Vonnegut. And,
• 01:07:41again, it took you, like,
• 01:07:42it's over the course of
• 01:07:43thirty,
• 01:07:44which is not, like, to
• 01:07:47remember I talked to the
• 01:07:48medical students. I tell you,
• 01:07:48you can learn something from
• 01:07:49everybody,
• 01:07:50how to or how not
• 01:07:51to. So taking thirty years
• 01:07:53to complete a project, that's
• 01:07:54under nine. Thirty nine is
• 01:07:56that's under the how not
• 01:07:57to category. For those of
• 01:07:58you who are trying to
• 01:07:59get your thesis done, thirty
• 01:08:00nine years is is probably
• 01:08:02too long.
• 01:08:04But you mentioned him twenty
• 01:08:05five years to write Slaughterhouse
• 01:08:07Five.
• 01:08:09Yeah. So he was way
• 01:08:10faster than you was your
• 01:08:11point. Way faster than me.
• 01:08:13I said, god, I wish
• 01:08:14I could complete something like
• 01:08:15that. Five years. I did
• 01:08:17a documentary on Lenny Bruce
• 01:08:18that took thirteen years to
• 01:08:20make and I used to
• 01:08:20say, I don't know whether
• 01:08:21to have the film released
• 01:08:22or bar mitzvahed.
• 01:08:26I figured this is the
• 01:08:27right room for a little
• 01:08:28bit. When we talk about
• 01:08:30circumcision too, but I guess
• 01:08:31that wasn't an issue.
• 01:08:33We
• 01:08:34So But you mentioned in
• 01:08:35the
• 01:08:36you mentioned in the film,
• 01:08:39hoping that perhaps you could
• 01:08:40get some relief from a
• 01:08:41clinical trial. Clinical trials. We
• 01:08:43we there was this experimental
• 01:08:45doctor in Los Angeles who
• 01:08:46was doing
• 01:08:47clinical trials, and we thought,
• 01:08:49what the hell? Because,
• 01:08:50you know, with progressive diseases,
• 01:08:52basically, they
• 01:08:53tell you, well, take your
• 01:08:55wife and put her in
• 01:08:56the corner and water her,
• 01:08:57you know, once a week
• 01:08:57or whatever. There's nothing we
• 01:08:59can do. So at least
• 01:09:00this guy said, you know,
• 01:09:01we're doing something.
• 01:09:02And I remember it was
• 01:09:03sort of like and, of
• 01:09:04course, you know, it had
• 01:09:06no effect, but didn't do
• 01:09:07any harm.
• 01:09:08So he you know, Hippocratic
• 01:09:10oath.
• 01:09:12And one was a medication
• 01:09:14called Bosulif,
• 01:09:15b o s u l
• 01:09:17I f. The second part
• 01:09:19was the thing you see
• 01:09:19here, and I forget how
• 01:09:21that worked exactly, but it
• 01:09:22was something that was put
• 01:09:23right on her head that
• 01:09:24was supposed to go to
• 01:09:26affected parts of her brain.
• 01:09:28And then the third one
• 01:09:29was,
• 01:09:30exosome
• 01:09:31stem cell
• 01:09:32therapy.
• 01:09:33And so the combination of
• 01:09:34all three, they were seeing
• 01:09:35if it had any effect
• 01:09:37and
• 01:09:38none that we could tell.
• 01:09:39I mean, the thing is
• 01:09:40there was no there's nothing
• 01:09:41to compare it to because
• 01:09:43the rate at which she
• 01:09:44you know, maybe it had
• 01:09:45slowed her down, but we
• 01:09:47don't know how fastly it
• 01:09:48would have progressed if she
• 01:09:49wasn't doing that therapy. So
• 01:09:51there was no, you know,
• 01:09:52control group.
• 01:09:53Anyway, so that was what
• 01:09:55we tried.
• 01:09:56And, again,
• 01:09:57we used to joke at
• 01:09:58the time, you know, if
• 01:09:59this is effective, we'd be
• 01:10:00going to, you know, China
• 01:10:02to have this done. Instead,
• 01:10:03we were going, you know,
• 01:10:04fifteen miles away to have
• 01:10:05it done. So we felt
• 01:10:06fortunate that at least we
• 01:10:07could try this, and it
• 01:10:09wasn't you know, it didn't
• 01:10:11take that much out of
• 01:10:12our lives.
• 01:10:14I wanna open up because
• 01:10:16we still we still have
• 01:10:17we still have time. No.
• 01:10:18We still have time. And
• 01:10:19there's there's,
• 01:10:22there's perhaps something that you
• 01:10:23might like to ask. So
• 01:10:24do me a favor, please,
• 01:10:25for the,
• 01:10:26for the benefit of everyone,
• 01:10:27including the folks who are
• 01:10:28on Zoom, is if you'd
• 01:10:29raise your hand if you
• 01:10:30have something to wait, and
• 01:10:31someone will bring you a
• 01:10:32microphone.
• 01:10:33There's a gentleman in the
• 01:10:34back row. We'll start with
• 01:10:35him right there with his
• 01:10:36hand up.
• 01:10:38Go ahead, please.
• 01:10:40Thank you. I'm a a
• 01:10:41chaplain at a Yale affiliate
• 01:10:43down in New London, and
• 01:10:45I do a lot of
• 01:10:46work with end of life
• 01:10:47care. And I'm just wondering,
• 01:10:48you mentioned I've kind of
• 01:10:49taken on Mark's comment about,
• 01:10:52professionals.
• 01:10:53I just like to know
• 01:10:54about family and friends. Maybe
• 01:10:56either the what they did
• 01:10:57for you, either the best
• 01:10:59thing they said or did,
• 01:11:00or maybe even please don't
• 01:11:02ever do that again, say
• 01:11:03or do.
• 01:11:04No. Did you all hear
• 01:11:06that?
• 01:11:08In the segue with the
• 01:11:09doctors,
• 01:11:10I I was very
• 01:11:11lucky. I mean, I'm lucky.
• 01:11:13First of all, I choose
• 01:11:13my friends carefully.
• 01:11:16So the idea of a
• 01:11:17friend of mine who just,
• 01:11:18like, duck out saying this
• 01:11:19is too much for me,
• 01:11:20But there's there's nothing I
• 01:11:22really
• 01:11:23needed from my friends so
• 01:11:25much other than,
• 01:11:26you know, visiting wasn't I
• 01:11:28you know, people would apologize
• 01:11:30about not visiting because their
• 01:11:31way I said,
• 01:11:33fine. And it truly was.
• 01:11:34I didn't need people visiting.
• 01:11:36She you know, other than
• 01:11:38a few very close friends,
• 01:11:39like, you know, the the
• 01:11:40top four
• 01:11:42and fam my immediate family
• 01:11:43members, you know, she didn't
• 01:11:44really want people seeing her
• 01:11:46once things got bad.
• 01:11:48Friends would call. You get
• 01:11:50those texts.
• 01:11:51How's everything?
• 01:11:53And I would text back.
• 01:11:54That's a conversation, not a
• 01:11:55text, but next time we
• 01:11:56talk.
• 01:11:59And
• 01:12:01we don't have any kids
• 01:12:02except the four legged kind.
• 01:12:03You see a few of
• 01:12:04them in that clip,
• 01:12:05which are great because
• 01:12:06you don't have to pay
• 01:12:07for Yale,
• 01:12:09and
• 01:12:10and they don't hate you
• 01:12:11when they become teenagers, which
• 01:12:13is another plus.
• 01:12:15So we we we did
• 01:12:16have kids, and,
• 01:12:18Vonnegut wrote another book called
• 01:12:19Mother Night, which I actually
• 01:12:21made into a feature film.
• 01:12:23And in that film, he
• 01:12:24refer in that book, he
• 01:12:25refers to a couple as
• 01:12:26a nation of two,
• 01:12:27that they sort of have
• 01:12:28everything they need with each
• 01:12:30other. And we were kind
• 01:12:31of like that, which does
• 01:12:32not mean that we didn't
• 01:12:32need friends, we didn't need
• 01:12:33family. Everybody needs that kind
• 01:12:35of support group. But we
• 01:12:37were such a team
• 01:12:40that it wasn't like, oh,
• 01:12:41where is everybody? I need
• 01:12:42people to come by. So,
• 01:12:44no, my my my my
• 01:12:45family, my friends behaved very
• 01:12:46well. We we are
• 01:12:49we are,
• 01:12:50as I say, secular Jews.
• 01:12:54So it's not like religion
• 01:12:55means nothing to us. We're
• 01:12:56a little bit religious.
• 01:12:59We had a rabbi
• 01:13:00who's a friend
• 01:13:02who came by a couple
• 01:13:03times and did some prayers
• 01:13:04overheard towards the end.
• 01:13:08I I didn't do a
• 01:13:10real kind of Shiva,
• 01:13:13for for a week, but
• 01:13:14I I did,
• 01:13:16I did, you know, I
• 01:13:17joined a minion,
• 01:13:19you know,
• 01:13:20during the I I did
• 01:13:21all that stuff, and she
• 01:13:23she wanted to be cremated,
• 01:13:25which isn't traditionally Jewish, but
• 01:13:27Jews can do anything now.
• 01:13:28We can cremate if we
• 01:13:29want.
• 01:13:30And the great thing about
• 01:13:32that actually, two great things
• 01:13:33about cremation, this is sort
• 01:13:34of
• 01:13:35just
• 01:13:36past where your work ends
• 01:13:38is,
• 01:13:43is that you know, because
• 01:13:44Jews this sounds like a
• 01:13:45joke, but Jews do bury
• 01:13:47right away,
• 01:13:48Like, get them in right
• 01:13:49away. It's supposed to be
• 01:13:50a mitzvah returning them, you
• 01:13:52know, to the to the
• 01:13:53earth.
• 01:13:54So, you know, you gotta
• 01:13:55make phone a lot of
• 01:13:56phone calls and relatives flying
• 01:13:57in, and, oh, I can't
• 01:13:58make it, you know, Sunday.
• 01:13:59Can you do it Monday?
• 01:14:00So as soon as she
• 01:14:01announced that she wanted to
• 01:14:02be cremated,
• 01:14:03that slows the process down.
• 01:14:05Because as soon as you
• 01:14:06announce that, you're in a
• 01:14:07queue,
• 01:14:08and you might be waiting
• 01:14:09four days before it happens.
• 01:14:11And that was great because
• 01:14:12it took the relief off
• 01:14:13of
• 01:14:14me. And then once and
• 01:14:15then I took the ashes
• 01:14:16home and kept them by
• 01:14:17my bedside for about a
• 01:14:19year.
• 01:14:20And then when I was
• 01:14:21ready and we had a
• 01:14:22plot, a shared cremation plot
• 01:14:23at a Jewish cemetery,
• 01:14:25when I was ready, I
• 01:14:27I
• 01:14:28I brought them over. The
• 01:14:29other great thing about I'm
• 01:14:30a big advocate
• 01:14:31for cremation now because the
• 01:14:33worst part of when a
• 01:14:34loved one dies
• 01:14:35and you go to a
• 01:14:36funeral
• 01:14:37is seeing that
• 01:14:39box
• 01:14:40being lowered into the ground
• 01:14:41with your loved one inside
• 01:14:43is, to me, horrible. And
• 01:14:45I've been through it with
• 01:14:46friends. I've been through it
• 01:14:47with family.
• 01:14:48Linda was in a beautiful
• 01:14:50little box,
• 01:14:51a hand hand carved wooden
• 01:14:53box from Poland, which is
• 01:14:54where my family was from.
• 01:14:55It was there by my
• 01:14:56bedside for a year. And
• 01:14:57when I was ready,
• 01:14:58it was very easy to
• 01:14:59put that little box in
• 01:15:00the ground because that wasn't
• 01:15:02her.
• 01:15:02You do it two days
• 01:15:03after the death, and that
• 01:15:05body is in that box.
• 01:15:06You're thinking that's her. This
• 01:15:08wasn't her.
• 01:15:09Oh my god. What what
• 01:15:10what a relief for me
• 01:15:12that was to not have
• 01:15:12to go through that. The
• 01:15:13irony is the other thing
• 01:15:14about not doing a conventional
• 01:15:16funeral
• 01:15:17is I said, I can't
• 01:15:19put on a jacket and
• 01:15:20tie and
• 01:15:22stand behind a podium and
• 01:15:23sob
• 01:15:24through, you know,
• 01:15:26a ten minute speech. I
• 01:15:27just can't do it.
• 01:15:29And then, ironically, I realized
• 01:15:30as I was preparing this,
• 01:15:31oh, gosh. I just delayed
• 01:15:32it. I'm doing her eulogy
• 01:15:33now. I'm gonna put on
• 01:15:34a jacket, not a tie,
• 01:15:35and I'm gonna stand there
• 01:15:36behind the podium and sob,
• 01:15:37but in front of strangers
• 01:15:38instead of family and friends.
• 01:15:40But it worked out
• 01:15:41fine.
• 01:15:43But,
• 01:15:45so what I did was,
• 01:15:46again, when I was ready,
• 01:15:48and it's after I went
• 01:15:49back and directed Curb, I
• 01:15:51had friends over. And some
• 01:15:52of the anecdotes I told
• 01:15:53you tonight, the funny things,
• 01:15:55some of those and some
• 01:15:56very touching ones, I typed
• 01:15:57them up on a piece
• 01:15:58of paper, and I cut
• 01:15:59out little strips, and I
• 01:16:00hand handed them to my
• 01:16:01friends. I said, whoever wants
• 01:16:03to tell you know, you
• 01:16:04can tell your own story
• 01:16:05or you can tell something
• 01:16:06prepared. And so they all
• 01:16:07got handed out, and so
• 01:16:08everybody unfolded the paper not
• 01:16:10knowing what they're gonna read,
• 01:16:11and it was full of
• 01:16:12laughter and all that. I
• 01:16:13thought this is exactly the
• 01:16:14right send off for her.
• 01:16:16So that's my other piece
• 01:16:17of advice.
• 01:16:18Don't worry about what's conventional
• 01:16:20and what people tell you.
• 01:16:21Well, you gotta do it
• 01:16:21this way. Do what you
• 01:16:23want. Do what they would
• 01:16:24want. And it made all
• 01:16:26the difference. It was such
• 01:16:26an important part of the
• 01:16:27healing process for me. Thank
• 01:16:29you. Thank you.
• 01:16:30Mark, you had something you
• 01:16:31wanted to ask?
• 01:16:33My subsequent answers will be
• 01:16:35shorter.
• 01:16:36K. Short question too. So
• 01:16:38so,
• 01:16:40a lot of us take
• 01:16:41care of patients, and somebody
• 01:16:42comes to a doctor's visit,
• 01:16:44and there's the patient, and
• 01:16:45there's the person
• 01:16:46who's with them. And the
• 01:16:47patient tends to be the
• 01:16:48center of attention.
• 01:16:50And and I'm wondering,
• 01:16:52if you would mind, just
• 01:16:53talk a little bit about
• 01:16:55what you think we should
• 01:16:56be concerned about with for
• 01:16:58the caregiver.
• 01:17:00What are you experiencing,
• 01:17:01whether good or bad or
• 01:17:03just something that you think
• 01:17:03the physician needs to know?
• 01:17:05Because as you pointed out,
• 01:17:06it's a dyad. It's not
• 01:17:07just a patient.
• 01:17:10It's an excellent question. And
• 01:17:12I
• 01:17:13I don't know that
• 01:17:16my
• 01:17:17situation with Linda
• 01:17:21would apply to anybody
• 01:17:23else.
• 01:17:23Again, you know, each situation
• 01:17:25is unique, and
• 01:17:26I
• 01:17:28I don't know. I just
• 01:17:29look.
• 01:17:30Let me tell you this.
• 01:17:32Feel a long answer coming
• 01:17:34up, is I was very
• 01:17:35we were very, very fortunate.
• 01:17:38I was in a position
• 01:17:39to take care of her
• 01:17:41financially,
• 01:17:43my work situation,
• 01:17:46physically.
• 01:17:48You know, being a caregiver
• 01:17:49is physical work.
• 01:17:51When you've got a person
• 01:17:52you're picking up and moving,
• 01:17:53putting into a car, getting
• 01:17:55out of a car,
• 01:17:56whatever
• 01:17:57and by the way, until
• 01:17:59she aspirated, we took a
• 01:18:00walk every day. People at
• 01:18:02this stage of PSP aren't
• 01:18:03usually walking. They're usually sitting
• 01:18:05in a chair with their
• 01:18:06head tilted,
• 01:18:08you know, in that state.
• 01:18:09You've all seen it.
• 01:18:11She was walking every day.
• 01:18:12I made sure of it.
• 01:18:13The walks became shorter and
• 01:18:14shorter until we'd step out
• 01:18:15of our driveway. We'd go
• 01:18:16three houses that way, then
• 01:18:17three houses that way. At
• 01:18:19the beginning, it was like
• 01:18:20a five block walk, but
• 01:18:21you adjust.
• 01:18:25Now my neck and my
• 01:18:26shoulder and my back were
• 01:18:27killing me because, you know,
• 01:18:28she's on my arm, and
• 01:18:30she's like this, and I've
• 01:18:30got all of her weight.
• 01:18:32No big deal. I'd get
• 01:18:33a massage, or I'd see
• 01:18:34a chiropractor, whatever.
• 01:18:38I was in a position
• 01:18:39to take care of her.
• 01:18:41There are people who are
• 01:18:42sick, who have nobody, who
• 01:18:43can't afford bus fare to
• 01:18:45get to the doctor.
• 01:18:46So how damn lucky were
• 01:18:48we
• 01:18:49that we had each other
• 01:18:51and I was in a
• 01:18:51position to do this? I
• 01:18:52was also in a position
• 01:18:53to hire a part time
• 01:18:54caregiver, a professional caregiver, so
• 01:18:56that I could run errands,
• 01:18:57go shopping, walk the dog,
• 01:18:58whatever.
• 01:19:00And she was
• 01:19:01great. Also,
• 01:19:02long term care insurance.
• 01:19:06You're young. You're thinking, no.
• 01:19:08Well, don't get it now.
• 01:19:09But
• 01:19:11when there's
• 01:19:12when there's someone in your
• 01:19:13life that is gonna be
• 01:19:15pay paying bills if something
• 01:19:16happens to you. So we
• 01:19:17had long term care insurance.
• 01:19:18Now
• 01:19:21let me make one point
• 01:19:22that's sort of off to
• 01:19:23the side of yours and
• 01:19:24even a little connected to
• 01:19:26the the chaplains
• 01:19:28or or to yours about
• 01:19:29what doctors tell you
• 01:19:31is
• 01:19:32when she spent those three
• 01:19:33weeks in the hospital during
• 01:19:34her last month,
• 01:19:36very fine professional, very nice
• 01:19:38doctor said,
• 01:19:40we think it would be
• 01:19:41a good idea before she
• 01:19:42comes home
• 01:19:43to go to a short
• 01:19:44term rehab facility
• 01:19:46for some skilled nursing. Because
• 01:19:48if you're not set up
• 01:19:49at home with the stuff
• 01:19:50and everything, this may be
• 01:19:51a lot more. I said,
• 01:19:53no. I'm bringing her home.
• 01:19:56He said, well, you at
• 01:19:57least consider. I said, I'll
• 01:19:58I'll consider because you've been
• 01:19:59very good, and I'll,
• 01:20:01you know,
• 01:20:02I'll consider it. But here's
• 01:20:03what I want you to
• 01:20:03do. They rate these places
• 01:20:05like hotels, one star to
• 01:20:06five star.
• 01:20:08I said, give me a
• 01:20:08list of places, only five
• 01:20:10star, I'm not even looking
• 01:20:11at a four star,
• 01:20:12that are within a twenty
• 01:20:13minute drive of my home
• 01:20:15that will accept the idea
• 01:20:17that my professional caregiver and
• 01:20:18I, one of us, will
• 01:20:19always be with her around
• 01:20:21the clock. So I'm sitting
• 01:20:22by her bed twelve hours.
• 01:20:23The caregiver's there twelve hours.
• 01:20:25I'm there to and that
• 01:20:26has to be an accepted
• 01:20:27part of the protocol.
• 01:20:30Twenty minute drive was so
• 01:20:31that when I go home,
• 01:20:32I could be there quickly
• 01:20:33and not have to face,
• 01:20:34you know, three hours in
• 01:20:35traffic.
• 01:20:36So they gave me a
• 01:20:37list that fit that criteria,
• 01:20:39five criteria, five star places.
• 01:20:42I went to the first
• 01:20:43place.
• 01:20:44It was a snake pit.
• 01:20:46I said never ever ever.
• 01:20:48You walk in. It smells
• 01:20:49of human excrement.
• 01:20:51You hear people screaming for
• 01:20:52help that nobody's bothering helping
• 01:20:54or people in the wheelchairs
• 01:20:56just out in the corridor
• 01:20:57like that.
• 01:20:59So this is not gonna
• 01:21:00happen. I went to the
• 01:21:02second one. Same thing. I
• 01:21:03didn't go to the third
• 01:21:04one. I didn't even get
• 01:21:06back to the hospital. From
• 01:21:07my phone, I called the
• 01:21:08doctor. I said, I don't
• 01:21:09care what it costs. I
• 01:21:10don't care what it takes.
• 01:21:12She is coming home.
• 01:21:13Never in a million years
• 01:21:14would I put my wife
• 01:21:15in one of those places.
• 01:21:16Because to whatever extent she
• 01:21:18was lucid at all,
• 01:21:19all she'd have to do
• 01:21:20is look around and say,
• 01:21:21my husband has committed me
• 01:21:23to a state insane asylum,
• 01:21:24and he's abandoned me.
• 01:21:27Wasn't gonna happen. I brought
• 01:21:28her home.
• 01:21:30Thank you, Karen. Those are
• 01:21:31the five star. So I
• 01:21:32assume one star is like
• 01:21:34a
• 01:21:35garbage bin outside of a
• 01:21:37supermarket where they throw in
• 01:21:38a sandwich every few hours.
• 01:21:40Sorry. That's that that's the
• 01:21:41impression I was left.
• 01:21:43It's an impression that,
• 01:21:45would tend to stay with
• 01:21:46one, I should think. Yeah.
• 01:21:47That's that's that's pretty horrendous.
• 01:21:49You know, we invited some
• 01:21:50neurologists here, and and I'm
• 01:21:51very pleased that their their
• 01:21:53chair has, has joined us.
• 01:21:55So doctor Hafler, please, you
• 01:21:56have a question. Not only
• 01:21:57a chair, but somebody sitting
• 01:21:58in it. A chair and
• 01:22:01And it's in endowed. Three
• 01:22:03three more you can play
• 01:22:04bridge.
• 01:22:07First, thank you so much
• 01:22:08for sharing. It's just very
• 01:22:10heartwarming, and I'll take the
• 01:22:11cremation idea to mind.
• 01:22:14Something the cremation business in
• 01:22:15New Haven is gonna be
• 01:22:17we're getting all these calls.
• 01:22:18What happened?
• 01:22:20They're not making caskets anymore.
• 01:22:21There's no business. I know.
• 01:22:23So
• 01:22:25I take care of patients
• 01:22:26with chronic disease, and we
• 01:22:28often have to give a
• 01:22:29diagnosis.
• 01:22:30And many patients say to
• 01:22:32me that how the doctor
• 01:22:34gave the news to them,
• 01:22:35it may have been the
• 01:22:36wrong diagnosis, but the same
• 01:22:37concept of it. What can
• 01:22:39we do better in terms
• 01:22:40of giving bad news? I've
• 01:22:41had physicians
• 01:22:43call a patient on the
• 01:22:44phone and say, oh, by
• 01:22:45the way, you have multiple
• 01:22:46sclerosis to an eighteen year
• 01:22:48old, which I think is
• 01:22:49reprehensible. But what could we
• 01:22:51do better
• 01:22:52in giving bad news? What
• 01:22:53could that physician have done?
• 01:22:55Or maybe there's nothing
• 01:22:58to help you and your
• 01:22:59wife do. Part of part
• 01:23:00of why as soon as,
• 01:23:02Mark invited me tonight, I
• 01:23:04said yes right away as
• 01:23:05I thought
• 01:23:07not that I have anything
• 01:23:09to teach or any advice,
• 01:23:10but, sure, the idea of
• 01:23:12doctors hearing about what goes
• 01:23:14on
• 01:23:16once they shake hands and
• 01:23:17say goodbye and the patient
• 01:23:18goes home.
• 01:23:20I want you to know
• 01:23:20what's happening
• 01:23:22as you move on to
• 01:23:23the next patient.
• 01:23:26So,
• 01:23:27you know, this was
• 01:23:29my story.
• 01:23:30I I would say don't
• 01:23:31give a diagnosis
• 01:23:33by text.
• 01:23:34I understand that young people
• 01:23:35break up by text. That's
• 01:23:37wrong.
• 01:23:39Look someone in the eye
• 01:23:40and say, I never wanna
• 01:23:41see you again.
• 01:23:42Show some humanity.
• 01:23:45Just a bit of a
• 01:23:46sidebar for the young people.
• 01:23:47Yeah. For for the for
• 01:23:49the kids out there.
• 01:23:52So
• 01:23:53keep in mind what I
• 01:23:55talked about today. What you
• 01:23:56know, you're all human.
• 01:23:58You you didn't all go
• 01:24:00into medicine for the money.
• 01:24:01Presumably, you did it to
• 01:24:02help people.
• 01:24:04So just, you know, answer
• 01:24:07to your
• 01:24:08better spirits, I mean,
• 01:24:10look.
• 01:24:11Some people don't want the
• 01:24:12news straightforward.
• 01:24:14Some people want it,
• 01:24:16you know, buttered up a
• 01:24:17little bit, or they want
• 01:24:18you to you know,
• 01:24:20we wanted to hear it.
• 01:24:22I I I told you
• 01:24:23you know?
• 01:24:26Again, it came in stages.
• 01:24:28I noticed something was off
• 01:24:29with Linda. That was the
• 01:24:30first stage. Second stage was
• 01:24:31her acknowledging something was wrong.
• 01:24:33So now I knew it
• 01:24:33wasn't my imagination.
• 01:24:35The third stage was the
• 01:24:36mini cog test. It's like,
• 01:24:38okay. She didn't do great
• 01:24:39on that. The next one
• 01:24:40is the
• 01:24:42neurologist
• 01:24:42who does the tests.
• 01:24:44And,
• 01:24:48and then the results come
• 01:24:49back from the test. And
• 01:24:50as I believe,
• 01:24:52that was we sat down,
• 01:24:53not with the one who
• 01:24:54did the test, but the
• 01:24:55neural our neurologist who has
• 01:24:57somebody administer the test.
• 01:24:59And as I recall, he
• 01:25:00just said, well, the results
• 01:25:02of the test indicate that
• 01:25:03what you have is something
• 01:25:04called
• 01:25:05PPA. Well, we didn't know
• 01:25:06what that was.
• 01:25:07And then he told us
• 01:25:08what it stood for and
• 01:25:09what it meant.
• 01:25:11And,
• 01:25:12so by that time,
• 01:25:14you know, it's sinking in
• 01:25:15that something's wrong.
• 01:25:16Nobody's feeling per well, I
• 01:25:18guess, you know, with something
• 01:25:19like cancer, I was gonna
• 01:25:20say nobody's feeling perfectly well,
• 01:25:21and then they get news
• 01:25:22that they have a possibly
• 01:25:23fatal disease. But, of course,
• 01:25:24that does happen. That's where
• 01:25:25the shock comes in with
• 01:25:26us. It was this gradual
• 01:25:28acceptance that something was wrong,
• 01:25:30maybe something very wrong, maybe
• 01:25:32something progressive, maybe something fatal.
• 01:25:35So by the time we
• 01:25:36got the news, as I
• 01:25:37say, we cried in the
• 01:25:38reception area that day because
• 01:25:40the Mack truck was on
• 01:25:41its way, but
• 01:25:43our doctor was straightforward but
• 01:25:45comforting, you know, bedside manner.
• 01:25:47Don't don't be cold. Don't
• 01:25:49be matter of fact.
• 01:25:51Be gentle.
• 01:25:52It's all I can say.
• 01:25:54You know?
• 01:25:56Now put put yourself in
• 01:25:57their place. How would you
• 01:25:58wanna hear it? I mean,
• 01:25:59that's the golden rule for
• 01:26:00pretty much everything. Put yourself
• 01:26:01in the other person's place.
• 01:26:03But But I appreciate you
• 01:26:04asking that. So just the
• 01:26:05fact that you asked that
• 01:26:06is shows a sensitivity that
• 01:26:08I'm sure gets you through
• 01:26:09a lot of this.
• 01:26:12Appreciate that very much. I'm
• 01:26:14very grateful to you, doctor
• 01:26:15Shapiro,
• 01:26:17for bringing us this wonderful
• 01:26:18gift of You know, it's
• 01:26:19six twenty five to be
• 01:26:21technical. I got to. Alright.
• 01:26:22Well, I'll tell you what
• 01:26:23I'll tell you what I'm
• 01:26:24gonna do because then then
• 01:26:25in that case, we're gonna
• 01:26:26have one more question. Because
• 01:26:28if you're really looking to
• 01:26:29work, I'm not gonna stop
• 01:26:30you. So I'm gonna invite
• 01:26:32my friend,
• 01:26:33doctor Sarah Hall to ask
• 01:26:35a final question. You asked
• 01:26:36for it because this could
• 01:26:36go on a while now,
• 01:26:37but we're gonna we're gonna
• 01:26:38keep it short. I'll try
• 01:26:39to keep
• 01:26:41my,
• 01:26:42question short. Although brevity, as
• 01:26:44those who know me, is
• 01:26:44not my strong suit. But
• 01:26:46it's actually a a follow-up
• 01:26:47question on that, which is
• 01:26:48to say, you know, I
• 01:26:49I was
• 01:26:50struck by how much humor
• 01:26:52sometimes gallows humor or dark
• 01:26:54humor kind of infused
• 01:26:56your relationship
• 01:26:57during the healthy times and
• 01:26:59then during the less healthy
• 01:27:00times. And, you know, I
• 01:27:01will say personally, like, when
• 01:27:03my mother was very sick
• 01:27:04when I was a child,
• 01:27:04she's fine now, but, you
• 01:27:06know, we also use gallows
• 01:27:07humor and said some things
• 01:27:08that probably would have sounded
• 01:27:10very,
• 01:27:12very morbid, but they that
• 01:27:14was how we got through
• 01:27:14it. But I wanted to
• 01:27:15ask again, going back to
• 01:27:16the theme of us being
• 01:27:18narcissistic at Yale, like, what
• 01:27:19about us? How can we
• 01:27:20do better? But how how
• 01:27:21as clinicians
• 01:27:23I guess the question is,
• 01:27:25do you did you experience
• 01:27:26sometimes in your interactions with
• 01:27:28clinicians
• 01:27:29their
• 01:27:30participating in that humor with
• 01:27:31you? Would that have been
• 01:27:33and if not
• 01:27:34if so, was it welcome?
• 01:27:35If not, would it have
• 01:27:36been? Or would that have
• 01:27:37been,
• 01:27:38you know, would that have
• 01:27:38been delightfully irreverent, or would
• 01:27:40that have been overly familiar
• 01:27:41and disrespectful? It's it's case
• 01:27:43by case. I think, in
• 01:27:45my case, the doctors, clinicians
• 01:27:46took their cue from me.
• 01:27:48Some of them knew my
• 01:27:49background and my profession a
• 01:27:51little bit.
• 01:27:53You know, curb your enthusiasm.
• 01:27:54We'd go after every form
• 01:27:56of doctor all the time.
• 01:27:57So a lot of those
• 01:27:58doctors saw those shows,
• 01:28:00and they got it. So
• 01:28:01if I'm in the room
• 01:28:02and I'm being lied about
• 01:28:04it or making a joke
• 01:28:05and Linda's chuckling,
• 01:28:06it gives them permission to
• 01:28:08be lied about it too.
• 01:28:09I wouldn't make any assumptions
• 01:28:10and make some joke about,
• 01:28:12well, you know what's worse
• 01:28:13is waking up in a
• 01:28:14casket without a brain.
• 01:28:16Hello? Is this thing on?
• 01:28:17Oh, tough room.
• 01:28:19You know, I I I
• 01:28:21I I would I would
• 01:28:22take your cue
• 01:28:23from the dynamic of the
• 01:28:24person you're you're you're talking
• 01:28:26to, but I'm somebody who
• 01:28:28accepts all kind you know,
• 01:28:29people
• 01:28:30say stuff, and then they
• 01:28:31say, oh, I hope that
• 01:28:32I didn't offend you. And
• 01:28:33I say, who do you
• 01:28:34think you're talking to?
• 01:28:35You know? That that's me.
• 01:28:37So,
• 01:28:38again, good question, brief answer.
• 01:28:40And thank you so much.