- Caring for a sick or aging loved one can be an uncertain journey.

Today's guest pulls back the curtain on the decade he spent caring for his elderly mother to offer a modern love story with insights and meaning for anyone who is a caregiver or anyone who has ever loved.

He's Dave Iverson, this week on "Story in the Public Square."

(upbeat music) Hello, and welcome to a "Story in the Public Square" where storytelling meets public affairs.

I'm Jim Ludes from the Pell Center at Salve Regina University.

- And I'm G. Wayne Miller with the Providence Journal.

- This week, we're joined by Dave Iverson, a writer, documentary film producer, and broadcast journalist, whose new book is titled "Winter Stars."

And I just have to say an absolutely beautiful book about caring for his elderly mom in the last decade of her life.

Dave, thank you so much for being with us.

- Thank you, Jim, and thank you, Wayne.

It's a pleasure to be here.

- We're gonna dive deep into "Winter Stars" in a minute, but you've been a long time storyteller working in broadcast, working on documentary films.

What drew you to narrative in the first place?

- Thank you, Jim.

You know, I think I've always been drawn to storytelling in some form.

I was an English major in college, you know, an old fashioned liberal artist.

I always liked writing and I come from a bit of a storytelling family.

My dad was actually an early radio actor in the old days of radio.

He was part of the original "Lone Ranger," and the original "Green Hornet."

And so I think that was probably somewhere buried in my DNA, though, it took me a while to find broadcasting.

I didn't do that right away out of college.

I was not a journalism major, but when I wound up working at a school for delinquent kids early in my life out of college, and they had some radio and television equipment and I got interested in it, went back to grad school and then my journalism career began from there.

But I've always been drawn to storytelling.

I think as David Fanning, the longtime executive producer of Frontline once said, we've always loved storytelling.

It's part of the human tradition, and whether that's gathering around the fire, or gathering around a TV studio as we are today, I think we're drawn to story, and there's great truth in story that I think resonates with people, and that's always been deeply appealing to me.

- That's the heartbeat of this show too.

So tell us a little bit more about your family.

The book obviously chronicles the last decade of your mom's life, but you also make reference and you tell us a little bit about your father and your brother and you.

So let's just explore that for a moment.

- Sure, well, my dad grew up poor in Buffalo, New York.

He was the child of immigrants.

His dad came from Norway to this country as a 30 year old.

My grandmother came from England.

My grandfather worked in the steel mills of Buffalo.

And my dad was a very bright kid who did very well in school, went off to college, and then the depression hit.

So he dropped out of college and had to be the one to support his family 'cause his dad lost his job.

And that's when he worked in radio.

My mom on the other hand, grew up in the Midwest and was the daughter of a school teacher, and later school superintendent.

And they met later in life in Michigan.

My dad finally got to return to college, didn't graduate until he was in his late twenties.

And they met teaching school in a suburban middle school in Grosse Pointe, Michigan outside of Detroit, and fell in love, but were separated throughout World War II, though, they managed to get married during the war and built their life from there, after my dad got out of the Army in the Second World War.

And so I grew up in sort of that idyllic, you know, post-war, suburban life of the 1950s with my two brothers.

And we had, you know, a really nice suburban life.

My folks taught us, I think, early on actually a very important thing, which we weren't the center of their lives.

They were each other's center.

They were really a great love story, one which I wouldn't fully understand until after my dad's death, and I discovered some old letters of his.

But we were a close family, and that played a real role, I think in my later decision to care for my mom.

- So Dave, talk about that decision.

You were 59 years old, I believe when you decided to move in with your mother, and become her caregiver.

And I think she was 95 at that time, and beginning to experience some symptoms of dementia.

And this was a very distinguished woman on every count.

Talk about your decision to move in with her.

You had never been a caregiver, certainly not for your mother.

Just give us that story, Dave.

- Sure, well my father had passed away due to complications of Parkinson's disease some years before, 13 years before.

And my mom had really been in some ways, my first lesson in caregiving and watching the way she stood by my dad during, especially the difficult final years of his life.

And my mom and I had always been very close.

We had a different kind of relationship in some ways in that we seemed to always kind of understand each other.

My mom used to love to tell the story that when I was a little boy, I looked up at her once and said, mom, we sure like ourselves don't we?

And that was kind of the nature of our relationship, a little smug perhaps, but a certain ease.

And that was a big part of my decision.

It also came at a time, Wayne, when I could.

I was, as you say, in my late fifties.

My career was well established.

I was still working full time, but I had a lot of flexibility in my work.

I was posting a radio show at the public radio station in San Francisco, and still making films.

In fact, I was in the middle of making a film about Parkinson's for the Frontline series when this decision was made.

But I just felt like I could.

And that if my mom needed help, then I should be the guy to do it.

And so I did without really a lot more thought than that.

And of course I was incredibly naive.

There was so much that I did not know, but sometimes I think it's useful to have a degree of naivete because otherwise we don't make those choices.

And it's a choice, I'm glad I made, despite all of the challenges that followed.

- You said there was so much you didn't know.

Talk about what you didn't know and what you learned.

And it was 10 years, I believe, before your mother passed that you were living with her, and her caregiver.

- Well, I didn't know I would get so exhausted.

I didn't know I'd get so angry.

I didn't know I'd be capable of that kind of anger.

I didn't know that I would be challenged in ways I'd never imagined or rewarded for that way in ways I'd never dreamed.

I didn't know I'd be joined by these remarkable women caregivers who were there during the week so that I could continue to work, who I learned so much from.

I didn't know that being a caregiver would actually prove to be more challenging than my own Parkinson's disease, which I had been diagnosed with just a few years before, like my father and my older brother before me.

And I sure didn't know when I moved in, you know, that it would be such a long term experience.

You know, my mom was 95.

I thought this was kind of a short term assignment that I'd given myself.

I didn't know that she would live until 105.

So all of that became clear, and became clear relatively soon.

And those challenges were the most challenging thing I'd ever done, but in some ways it also became the most rewarding experience of my life.

- Yeah, Dave, I read this thinking about others who maybe grappling with decisions about whether or not to care for a loved one in the home or considering other options, and it seemed to me like maybe you were thinking about those other people in similar situations.

Is that a safe assumption?

Were you thinking about other caregivers in writing this?

- Yes, I primarily wanted to write this story, you know, coming back to what you were saying and we were talking about with storytelling, Jim at the beginning, because it's the story I know.

I didn't really want to write a how-to book, you know, how to be a caregiver because I think every circumstance and every caregiving situation is different.

Although of course there's commonality within that.

But I think one of the interesting things about caregiving is that while it's a common experience, AARP estimates that there are 53 million family caregivers right now, mostly caring for older Americans, and yet most caregivers feel alone.

You know, they feel like I'm the only person doing this.

I'm the only person dealing with this.

And of course that's not true, but we don't talk very much about caregiving in this country.

We don't talk very much about elder care.

We're still in this pandemic, which killed over 200,000 residents of nursing homes and assisted living facilities, most of which happened in the early months of the pandemic.

And yet, you know, we don't talk a lot about it.

Congress was unable to pass the Build Back Better Law, which would've provided $150 billion in improving elder care in this country.

So yes, part of what I hoped this do is that this story, the way I hope any good story does, will resonate with people, and that we'll begin to have a conversation in this country that I think is deeply needed about how we provide care for our oldest citizens, for the people we love.

What does that take?

It doesn't have to all look like my experience.

Certainly not everyone has that opportunity, nor is it correct for everyone, but I think we all want at a minimum kind, loving care.

I think that's something we need to talk about in this country.

And I think it's something we need to advocate for because as you both probably know, someone turns 65 in this country every eight seconds, right?

So that means that by the end of our time here together, there'll be six or 700 more 65 year olds than there were when we started.

And by this time tomorrow, there will be 16,000 more 65 year olds than there are in this moment.

We have to face this.

And it's something that we will all experience either as someone who provides care or who receives care.

So I have a great desire to help prompt that conversation.

And I hope this book can do that.

- You used the term rewarding as part of your experience living with your mother, and the book is full of moments that were rewarding to you.

Maybe you could recount one or two, or just give sort of a general overview of what was rewarding being with your mother and what was so important, and really what constitutes the love story between you and your mother.

- Yeah, and if I could even extend that a bit, Wayne, I would also say it became a love story between me and the women who cared for my mom with me, as well as the woman who had been my longtime partner and later my wife Lynn, because it was all of that.

But yes, I think that, you know, caregiving shines sort of a bright light on both your strengths and your weaknesses.

In fact, I sometimes say it's sort of like a heat-seeking missile that pierces your defenses and reveals your weaknesses.

And yet through that experience, I think there are things that happen that can be deeply rewarding.

I'm someone who always likes to be right about things, and doesn't mind telling you that I'm often right about things, and caregiving teaches you and dementia teaches you that that's almost an entirely worthless attribute.

And so just getting better about certain things, learning to treasure moments precisely because they won't last, you know, that these moments of great love and intimacy, because caregiving is an intimate act are so to be treasured.

You're right in this nexus of life and death and love and frustration.

And when you can stay with that, there's such revelation really in that.

I describe in the book a time, it was actually the last time that I took my mom to the beach.

She was 102, maybe approaching 103.

And I just remembered in that trip that I was not gonna correct my mom.

I was just gonna be there with her.

And we were approaching the beach and my mom's vision was failing, and she couldn't see the water.

And we'd made this trip hundreds of times, probably a thousand over the years that I'd grown up.

And as we approached the water, I could see it plainly, my mom couldn't.

I said, well, mom, just tell me when you see the water.

And we got just very close to the water.

And then she broke out into this wide smile and said, I see it.

And moments like that, being together in that way, provide you with this wonderful life circle where you know, this is the person who gave birth to you, and now you're coming back around to sort of be with her to see her through.

And I think within those moments, there's great opportunity for beauty and wisdom, just as I discovered so much wisdom as well from the women who surrounded me.

- Dave, one of the moments in the book that really moved me was your discovery of your father's wartime letters to your mother, love letters.

And what I took from that was some advice to get to know our parents, not just as our parents, but as young and vital.

And understand that they've had this whole human experience.

Was that your experience in finding those letters?

- It was.

After my dad passed away, I was in his study, which is in the back of our house, the house I grew up in, in Menlo Park, the house I returned to, to care for my mom in Menlo Park, California.

And in the back tuck behind his desk was this box of letters that I'd never seen.

And in them were piled hundreds and hundreds of letters that were my dad's wartime correspondence.

And I'd never seen them before, but my mom had saved every letter that my dad had written during World War II, over this extended period of time when they were separated almost entirely, except for the day they got married and a few other occasions in between.

And they were passionate and funny, and, you know, just so sometimes kind of risque in a way that my dad, who was this very buttoned down professorial fellow was just like bewildering to me.

I mean, I remember reading letters like once it was during basic training and he said, "Dear Adelaide, today's activities are devoted to athletic activities.

I'm devising my own games in my bunk.

Would you care to join me?"

(Jim and Wayne laughing) And I remember reading that and thinking, who is this, you know?

or just this two line letter that read, "Dear Adelaide, you don't wear sheer blouses?

Pity, Bill."

I mean, so, yes, Jim, I mean, absolutely.

But it was still a wonderful discovery to make just the same.

And I would read those letters aloud to my mom and she'd laugh.

And so it was a wonderful discovery and I'm so grateful for them.

I have them all right next to me here in a file cabinet.

I treasure them, yeah.

- So Dave, that was one of many passages in the book where I was so moved.

It was emotional just reading it.

And I savored it and went back and read again, and actually several times.

Toward the end of her life, as her dementia was deepening, there were times when she didn't even recognize you.

She could no longer read her beloved New York Times.

You mentioned going to the beach and she couldn't see anything until she got really close.

We've asked you to read a passage and that comes from your last Christmas together.

And again, this was a passage that Jim and I read and reread, and we're hoping that you can read it for us now.

- Thank you, yes, I'd be very pleased to.

Yeah, dementia became more and more challenging and that was challenging for all of us.

And I'd often gotten too frustrated.

I'd gotten angry sometimes.

I'd yelled at her sometimes because I'd get so frustrated, but we came through all of that.

And during the last year of her life, she was very restless.

She always wanted to be doing something because she'd been so accomplished and so active all her life.

And I worried that she would go out of life, leave this life restless and not in any kind of peace.

But on this particular night, I knew when I walked into her bedroom, that something was different.

"When I walked into my mom's bedroom, I knew right away on this December night that she was in a different place.

There wasn't any restlessness.

She just seemed calm and quiet.

She looked to be quite remarkably at peace.

We sat there for a long time just holding hands.

And I felt a wave of tenderness come over me.

After a while, my mom looked at me and said in a voice that was soft and only slightly slurred, 'You look wonderful.'

And I told her that she did too.

And then I said, 'We make a good pair.'

She smiled and said, 'What a pair.'

And then we sat, my hand on top of hers, just sitting there nothing more.

And then she turned her head to me and said, 'I feel lucky.'

She said it with more clarity than anything I had heard her say in recent months.

And I told her that I felt lucky too, lucky for all that she'd added to my life and the lives of those around her, and that I'd always remember what she had taught me.

And then she said it again, 'I feel lucky.'

And so I asked her if she could tell me why.

There was a long pause.

And then she looked at me with eyes as bright as winter stars, and said, 'Because there's love all around.'

On that Christmas night, I felt something I had not experienced before that all my time with my mom was still unfinished.

Our journey was now complete.

We had endured our bursts of anger and frustration, but over time, our deep and abiding connection had always held.

And while the currents of time and age had taken us into territory we'd never imagined, we kept traveling.

And that journey carried us to our truest destination as mother and son.

It had brought me to the bedside of someone I loved, so that I could hear the deepest of all truths, that there is love all around."

- Dave, it's a powerful scene and it's beautifully told.

That's a world changing perspective.

There is love all around.

And I got to the end of this, and I said to Wayne, this whole book is a love letter.

It's a love story.

That had to be incredibly transformative just for you as her son.

- Oh, no question, no question.

I think it brought me, Jim, to this place of valuing who's right in front of you and to treasure that.

You know, sometimes we get caught up in wanting someone to be different.

Sometimes I'd want to my mom to be who she once was or who I'd like her to be, but instead to remember, this is who she is.

This is who she is right now, and to hear the truth that, that represents.

I think one of the things that I didn't understand about dementia is that sometimes there's truth beneath the words that are said.

So that if my mom would say, for example, "I went to law school," which she had not, rather than my correct her, which is what I used to do, and I only realized this in some ways too late, but to now at least have the perspective that when someone says something like that, don't rush in to correct, but to have less certainty and more sympathy, you know?

In this case, it would've been great if I'd said to my mom, well, why were you interested in the law, which she was, or did that interest you because you were interested in politics, and maybe wanted to run for office one day, because she would've made a hell of a politician, you know?

The San Mateo County Board of Supervisors would never have been the same.

But I guess that's it in a way, you know, less certainty, more sympathy, to be present to that, and to act on that.

One of the great lessons, one of our caregivers taught me, a young woman from Nicaragua originally, Ronette Morales, was to just do things with Adelaide.

She would open the door in the morning, and say, Adelaide, let's go see some flowers.

And just take my mom right out of the house in the wheelchair and go.

Whereas if she had wasted that, and said, well, Adelaide, do you think maybe we should, it never would've happened.

I'm not good at that sort of instant action, but this experience taught me to be a little better.

All of those things, they're little things, you know, Jim and Wayne, but I think getting better at the little things matters.

- It's such incredible advice that you've just given and not just obviously for someone who is taking care of an elder parent, but really for all of us in our lives and the people in our lives.

So thank you for that message.

Very quickly, 'cause we only have a couple of seconds, you have become active in the Michael J.

Fox Foundation.

Tell us about that.

- [Jim] Literally about 20 seconds, Dave.

- Well, it's a wonderful organization that has made a colossal difference in the lives of people with Parkinson's, which matters to me, but they're also tackling other issues, including providing caregiving support.

And the royalties from this book will go to that foundation, along with two other organizations that work with people with Parkinson's and in elder care.

And it's a cause that matters to me, and I hope others will support it too.

- Well, the book is "Winter Stars" and it is wonderful.

Dave Iverson, thank you so much for being with us.

That is all the time we have this week.

But if you want to know more about "Story in the Public Square," you can find us on Facebook and Twitter, or visit pellcenter.org, where you can always catch up on previous episodes.

For G. Wayne Miller, I'm Jim Ludes asking you to join us again next time for more "Story in the Public Square."

(upbeat music)