MICHEL MARTIN, HOST:
I'm Michel Martin, and this is TELL ME MORE from NPR News. Now we are going to continue our series of conversations about a journey all of us will eventually face: aging and the end of life. Now we're going to turn our attention to the challenge of caring for loved ones as they age. Tens of millions of Americans are already doing this. As one of our guests, former New York Times reporter Jane Gross, tells us in her new book, "A Bittersweet Season," some 65.7 million Americans, or 28 percent of the population, are currently serving as unpaid family caregivers.
And among those caregivers, some 43.5 million people, or 19 percent, are responsible for an older adult. And while this can be rewarding for families, it can also be one of the most exhausting, frustrating and isolating experiences many of them have ever had.
To find out more, we've called upon three people who have faced these issues in their own lives, and written movingly and courageously about it. Jane Gross, as we said, is the author of the book "A Bittersweet Season: Caring for Our Aging Parents and Ourselves." In it, she writes about caring for her ailing mother. She's also a contributor to the New York Times blog The New Old Age. Also with us, Christopher John Farley. He's the senior editor of the Wall Street Journal Speakeasy blog, and he cared for his father until he passed away last year. And Beatriz Terrazas writes the blog My Mother's Brain, about her experience caring for her mother, who has Alzheimer's.
And I thank you all so much for joining us. And I also want to say that I'm sorry for the losses, and for all that each of you has experienced in your own way - even you, Beatriz, whose mother is still with us. And I just want to say thank you for coming, and thank you for being willing to talk about these things.
BEATRIZ TERRAZAS: It's nice to be here. Thanks for having us.
JANE GROSS: It's a pleasure to be here and actually, compared to Beatriz and Chris, my loss is a long time away, so.
CHRISTOPHER JOHN FARLEY: And I have to say also, you know, I'm glad - thank you for saying sorry, but I feel no sorrow at all. I thought that, you know, like, my dad lived a terrific, full, rich life and so there was little to be said about at the end. Obviously, would love him to still be here. We wanted him to live to 150. But he lived 88 years, and they were 88 good years.
MARTIN: All right. Well, thank you for all those perspectives. And Jane, I'm going to start with you because, really, your book reminds us that this is a story hiding in plain sight. I mean, tens of millions of people are facing this, and yet you write about the fact that it's almost invisible, even though it's consuming of many, many resources; many, many dollars; much time; much energy.
Why did you want to write this story, and what are some of the lessons that you hope people will draw from it?
GROSS: First of all, it makes me very sad to hear that it's still invisible. But my primary reason for writing it is that my younger brother and I are both journalists, high achievers, accustomed to either knowing the answers to most questions or being able to pick up the phone and finding them out, you know, without too much fuss and bother. My mother was a retired registered nurse. We weren't wealthy but we were, certainly by any normal standards, you know, well-resourced in every possible way.
And we felt like we'd been hit by a brick. I mean, we had no clue what had happened to us, and no clue until probably halfway in that four-year period. I mean, every day was like a crisis where we had to decide yes or no, and we had no idea what the right answer was.
MARTIN: Jane, what was the hardest part?
GROSS: I think the hardest part was feeling so stupid. And feeling so stupid about, you know, some of the most basic things. I mean, you know, I didn't even know that Medicare didn't cover the vast, vast, vast percentage of what my mother needed because what she needed was, you know - and I find this a demeaning, unattractive word - but custodial care, not medical heroics.
And, you know, the notion that the one group in our society, the 65 and over, who we all think have universal health care only have universal health care if they want a procedure or a test or an operation. They have nothing if they need someone to help them walk or go to the bathroom, or live in a place like assisted living or a nursing home. And that just blew me away; I had no clue.
MARTIN: Christopher John Farley, your father was a very accomplished man - as are you, of course - but an economics professor at the State University of New York. You wrote about how he earned a Ph.D. in London at a time when it was very rare for a black man from the Caribbean to do so. What did you want us to draw from the example of his life and what you learned from being there with him at his death?
FARLEY: Well, certainly, he was a champion of education all his life, and I think that's the message of his life that gets sent out - that it's a good thing to pursue your degree; it's a good thing to sort of overcome any barriers to your education. And I should say, my mother was the one who actually cared for him. And for over a decade, she was there day in and day out. She put aside all sorts of other things professionally and personally, to make sure that he had the care that he needed. And what I took away from that is, really, seeing just how strong love can be.
I mean, it's one thing to sort of love someone when they're in their 20s. Everyone is hale and hearty, and you're partying all night. I mean, that's just kind of an easy love; it can even be cheap. But seeing the kind of love that really goes through the tough times, through disease and illness and old age, when someone is not a whole lot of fun to be with because of the things you have to do with them - when love can get through that and still, you know, overcome, that's really an amazing thing to see up close. And so that really taught me something about the way two people can be.
MARTIN: Beatriz, you write about - you blog about the many issues that you and your sister face in caring for your mother, who has Alzheimer's. And you also point out that your sister is, you know, the one who's on point, you know...
TERRAZAS: Mm-hmm.
MARTIN: ...most of the time, but that you do do your bit. And this is very hard. I don't think we should shy away from just how hard it is. What are just some of the things that you would like people to know about this experience that causes you to want to write about it?
TERRAZAS: Well, I think one of the reasons that I started the blog was so that we could get a little bit further down the road, as far as the feeling alone. I think you do feel alone when you're facing all of these issues, and you're jumping from one crisis to another. And I think that's why it's still sort of a - what Jane was saying, sort of a - kind of a hidden thing, is that people just do it. You know, they don't have time to sit there and write about it. You're moving from OK, so now she's incontinent. Now I need to figure out how to buy Depends. What do I do now? So you're making phone calls and by the time you're done with that, she's gotten out of the house, and you're trying to figure out how to stop that from happening. And then by the time you've taken care of that, something else comes up. So you're moving from one crisis to the next, and you don't really have time to spread the word and talk about it.
Now because I am a little bit farther away - I'm 600 miles from where my mother lives - I just, I wanted to share this story. And I think that one of the things that is the hardest is that there are so many of us who have moved away because of jobs, because of marriages, because of relationships. And we are not there. And I think for me, that's the biggest challenge.
GROSS: Well, I mean...
MARTIN: Jane.
GROSS: You know, I was listening to Beatriz. In many ways, I think that there's nothing harder than to be the one who isn't there - I mean, first of all, because you feel guilty. But you also only see your mom at space junctures and are probably much more shocked and turned upside down by, you know, there being less of her each time - because you're seeing it not day-to-day.
MARTIN: If you're just joining us, you're listening to TELL ME MORE from NPR News. We're speaking with three people who have been caregivers and witnesses to the final moments of their parents' lives. Our guests are Jane Gross; that's who was speaking just now. She's author of the book "A Bittersweet Season: Caring for Our Aging Parents and Ourselves." Also with us, Beatriz Terrazas. She writes the blog My Mother's Brain, about caring for her mom, who is still with us and has Alzheimer's. And Christopher John Farley is the editor of the Wall Street Journal's Speakeasy blog. He wrote about the death of his father last year.
But you know, Christopher John, one of the reasons we wanted to talk to you, in addition to the fact that you are a guy, and so often the caregiving falls to women - as you also pointed out - but also, you're also a dad of two yourself, so you fall into what many call the sandwich generation of people who are caring for both kids and for their parents. And you also work, you know. I understand that your mom was the primary caregiver, and I appreciate your pointing that out, but it's also managing all those roles. I just - I don't know about you, but as a working parent of small children, there are just times when you just think, I just can't do it. I just can't. But you have to.
FARLEY: Being part of a caregiving - although again, my mom was the primary caregiver; I came in, swooped in, and gave her a break now and again - I think it really helped me profoundly as a parent. I mean, my dad was someone who was there, you know, to teach me to read, taught me how to ride a bike. But you know, that last lesson in his death - I mean, when you see someone, you know, pass that threshold, go through the suffering, you're there in the hospital, other things sort of snap into perspective. They don't seem so burdensome. You know, dealing with kids, dealing with bills, dealing with job issues, they suddenly don't seem as great and indeed, they are not as great. And you're able to deal with them, I think, more as an adult. And so I think being part of that process rather than being something that's a burden, I thought profoundly - sort of added to - sort of my store of adultness.
MARTIN: Beatriz, I wanted to ask you something else that you wrote about on the blog.
TERRAZAS: Mm-hmm.
MARTIN: You wrote that, quote: If you're not a caregiver, it's difficult to understand the rigors of being someone else's brain.
TERRAZAS: Mm-hmm.
MARTIN: And Jane, you wrote about that, too, in the book - how sometimes, you know, people, you felt, minimize like, what you were going through. And Beatriz, I wanted to ask you this and Jane, I'm going to ask you this, also. Did you feel - or do you feel like you're being judged by other people?
TERRAZAS: It is extremely difficult to understand a path that you are not walking. And I think that where I see the most difficulties is as far as cultural expectations and cultural differences. I've had lots of friends who are not Latino or Latina ask me well, why don't you just put her in a nursing home? My family is - I guess you would call us binational. I grew up on the border in El Paso. I have family in Juarez. There was never anybody who did not receive help from a family member.
You know, a very seminal moment for me was when my grandfather was dying at home, and they finally - the family somehow finally decided that he needed to be in a hospital to die. And that was the first time that I remember experiencing a family member leaving the home to die. And my cousin who was probably - this is a male cousin - he probably was maybe 13, 14 at the time. I mean, he sat there and watched the ambulance drive away, and he cried. And he said, you all don't know how to take care of him. I do because I am the one who has been doing it.
So that's the kind of background I come from. So thinking about my mother in a nursing home - and that's, I think that's where I do feel judged just a little bit, where people think - people who don't understand where I come from. And I think that's also another reason that I started the blog - because we do have a different way of doing things.
MARTIN: There's so much more to discuss. But I did want to ask if each of you had just a couple of words for those who are listening to our conversation, who are perhaps in the middle of the journey that you are on or just starting on the journey that you are on, and are in the position that you all have been or are in, of caring for someone that they love at this stage of their life. And so Beatriz, would you like to start?
TERRAZAS: Sure. I think the most important thing that I try to tell others who may be starting down this path is: If you need help, ask for it. You would be surprised how many people would be willing to help you by running to the grocery store, by sitting with a parent for just a little while. Ask for it. If people offer help, accept it. It's tempting to say, I can do it all by myself. I've watched my sister struggle with this, and I have gone back and forth to El Paso, dropping work to go stay with my mom.
And the beginning of this year, my brother, who is single and has a business here in North Texas, said you know what? I need to be more involved, and the only way I can do this is by moving back to El Paso. And he left his self-started business in someone else's hands, got a job in El Paso and just moved. And my sister cried with relief. So people will step up to the plate.
MARTIN: Christopher?
FARLEY: Yeah. Well, I think that obviously, you know, dying is hard. But there are things you can do to make it a little less hard on people in the family. Number one, make sure you have a financial plan in place for what's going to happen at the end of life for your parents or your loved ones, and meet with a financial planner, with a lawyer, with an accountant. Figure out how you're going to handle it, how you're going to pay for things, where all the papers are around the house before people forget where those papers are. See if there are any institutions that can help you out.
And also, you know, talk to your loved ones about what they want. Do they want to be put in a nursing home? Do they want to be resuscitated or have extraordinary measures taken if something happens? You've got to know where they're coming from before it's too late to ask them those questions and it becomes guesswork. So do as much preplanning as you can. It may sound a little strange to ask questions like that but in the end, you'll be thankful that you did if you have a plan in place before the worst happens.
MARTIN: Jane?
GROSS: We're such a death-denying culture that nobody wants to talk about this or think about this until it slams them in the face. And that said, the trajectory of how they go - I mean, whether it's physically or kind of medically, whether it's fast or slow, how much it costs, how you and your siblings get along, how long it takes - I mean, it's an utterly unpredictable trajectory. And I'm not a parent, but I would imagine to the extent that I'm capable of imagining it, when you're dealing with a sick child, every decision that you make hypothetically alters the end result. With an elderly parent, as harsh as it is to put it this way, the end result is always going to be the same.
MARTIN: Hmm.
GROSS: And rather than tie yourself up in knots trying to get the individual pieces of it right, I would say, you know, to sort of go a little bit more Zen than that while it's going on. And be the son, be the daughter; get as much out of the time as you can, give them as much pleasure, give yourself as much opportunity to store up good memories - because it's going to end the same way regardless.
MARTIN: Jane Gross is the author of "A Bittersweet Season: Caring for Our Aging Parents and Ourselves." She was with us from NPR's bureau in New York, along with Christopher John Farley. He is the senior editor of the Wall Street Journal's Speakeasy blog. And also with us from Dallas, Beatriz Terrazas. She writes the blog My Mother's Brain, about caring for her mother, who has Alzheimer's. Thank you all so much for joining us.
GROSS: Thank you for having us, Michel.
FARLEY: Thank you.
TERRAZAS: Thank you.
MARTIN: And that's our program for today. I'm Michel Martin, and you've been listening TELL ME MORE from NPR News. Let's talk more tomorrow. Transcript provided by NPR, Copyright NPR.