Wisdom For Adult Children Caring For Aging Parents

Five-time Pulitzer Prize nominee Jane Gross reported on a wide range of issues for the The New York Times for decades. In recent years, she turned her attention to America's aging population. She speaks with host Michel Martin about coping with the loss of her mother and shares advice about caring for aging parents and ourselves.

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MICHEL MARTIN, HOST:

I'm Michel Martin and this is TELL ME MORE from NPR News. Coming up, a tribute to the legendary singer Etta James, who died on Friday at the age of 73.

But first to our Wisdom Watch conversation. That's where we talk with people who've made a difference through their work. And today we speak with a woman who is rewriting the way we talk about aging and the end of life in this country. Award-winning journalist and author Jane Gross was a New York Times reporter for nearly 30 years. There she covered many major beats, including health. She's been nominated for a Pulitzer Prize five times.

In recent years she's focused her writing on the subject of aging. In 2008, she launched the New Old Age blog for the Times. She's also the author of the book "A Bittersweet Season: Caring For Our Aging Parents and Ourselves." In it she chronicles with brutal honesty the final years of her own mother's life and how she and her mother and brother coped.

We included Jane Gross in TELL ME MORE's End of Life series this past fall and we found that we had more to talk about, so she's back with us now. Welcome back. Thanks for joining us.

JANE GROSS: Thank you for having me again, Michel.

MARTIN: Just to kind of reprise a couple of the things we talked about, if people missed our earlier conversation, we mentioned that as a long time reporter you reported on a lot of things. You started as a sports reporter. You worked on lots of national stories, but you had been reporting on health, but not aging, specifically.

But as your mother began to age and you realized that she needed, you know, more help, did you think you were ready? Did you think you knew everything you needed to know?

GROSS: No. But I thought as a reporter I was capable of finding out everything I needed to know. I didn't realize that the systems were so complicated, that they were coupled with the sort of emotional baggage of it being your mother and your brother, that you couldn't just pick up the phone the way you did when you were a reporter and get an answer.

MARTIN: What was the hardest thing?

GROSS: I think the hardest thing was feeling so stupid. Stupid about really basic things, like what Medicare is and what our residential choices were and how stupefyingly expensive everything was.

And also, all the old family dust flies and when there are siblings, you sort of become in the family who you were in the family as a child, as opposed to who you are in the family now.

MARTIN: Were you shocked that you were shocked by how hard it was?

GROSS: Yes. I thought that my level of competence and my brother's level of competence - and we're both journalists - coupled with my mother's level of competence as a retired, registered nurse, she also was cognitively intact, so when it comes to her being part of the decision-making, we were extremely fortunate.

If there was family that had all the pieces in place to do this effortlessly, it was us and I felt like I'd been hit by a truck.

MARTIN: Why did you feel like you had been hit by a truck?

GROSS: Partly because of the ignorance I spoke of, and partly because of the fact that, even if you know all the basics, there's a whole category of things that are going to depend completely on the trajectory of the aging. You can't know in advance how long it's going to last. You can't know in advance how much it's going to cost.

And I'm the kind of control freak who likes to be able to make a list and check things off. It doesn't work that way.

MARTIN: We recently had the opportunity to speak with former Secretary of State Condoleezza Rice on this program about her new memoir. She talks about the fact that when she was originally asked to join the George W. Bush administration as national security advisor, she said no. And the reason she said no is that her father had suffered a stroke and she didn't feel she could leave him. She recounts a conversation with a friend where she says if I had children, people would understand it, but because I don't and because this is my father, I don't think people would understand.

Do you think that that's true?

GROSS: I think that that's fascinating. I hesitate to say categorically that I think it's true of children, and I think it would be presumptuous, although what makes it so interesting to me as an example is when Hillary Rodham Clinton's mother died, I was really struck reading the obituary that I had no idea - and I read the newspaper every day - that her mother was nearing the end, which obviously she was. And a trip hadn't been made overseas for that reason. And she must've felt just the way Condoleezza Rice felt.

MARTIN: I mentioned that you were part of an earlier roundtable of adult children who've cared for their elderly parents. It was part of our End of Life series and you were nice enough to participate in that. I just want to share something - some feedback we got from a listener after the series. And she wrote in from Missouri, and then she said that she like the segment, quote, "sounded a glossier view of what caregivers actually experience."

She wrote about how hard her own life is as a caregiver. She talked just about how wrenching and exhausting it can be. And I just wanted to, you know, ask, you know, we often don't get a do-over in this business, but I would like to say do you agree that - is this something that we can share, that we perhaps did not get to in that conversation that we really should tell people?

GROSS: I thought it was wrenchingly difficult. I also thought in many ways it was redemptive because I was closer to my mother when it was over and I was closer to my brother than it was over, so at least at the back end it was an enormous reward, if you will, in my case.

Statistically, if you ask people, old people, where they want to end their lives, the answer is home. Not all of us because of the size of our families, because of the difference in location, because of our professional situations, because of what's actually physically wrong with our parents, because of our relationship within our families, are able to do that. And my mother spent the last two years of her life in a nursing home, and a fabulous nursing home where she got remarkable, wonderful care. But I spent the two years leading up to that doing everything I could possibly do not to quote/unquote, "put my mother away." And the guilt of that is excruciating. And the number of situations that I sort of jerry-rigged leading up to that in order to avoid that made it much harder for me and much harder for my mother, largely because she was in pretty - you don't have to feel so guilty as a daughter kind of assisted-living type - places that didn't look like a nursing home, didn't smell like a nursing home, didn't feel like a nursing home, but where there was no decent care. So every time the tiniest thing went wrong they called an ambulance, which is really tough when you're the one following the ambulance to the emergency room once a week or so, and, you know, very tough for my mother. There was less of her, if you will, after each trip to the hospital.

MARTIN: What's the one thing you wish somebody had told you before your mother started to decline that would have helped you?

GROSS: It's hard to boil it to one. I would say the other thing that I wish I had known was that Medicare, which most of us believe is universal health care for old people and that no one explains to you beforehand is that it covers procedures and drugs and operations and doctors, but it doesn't cover custodial care. So if your mom is home and you need a home health aide or you need somebody to drive her around or you need somebody to help her unpack the groceries, Medicare covers none of that. And it's hugely expensive. And you pay for it out of pocket until you're impoverished. And then Medicaid, as a poverty program, picks it up. I wish I'd known that.

MARTIN: And one of the things we talked about is that - and you've talked about is that you are very well-educated, you're smart, you're savvy and you were kind of hit over the head with just how fast the bills kick in and how complicated the assistance can be to navigate. Is there a broader lesson here that really we all need to clue into about the way these systems work or don't work?

GROSS: Medicare was designed in 1965, and it was a perfectly wonderful health insurance system for old people in 1965, when they didn't live these astounding ages. You know, if you were going to design Medicare knowing what we know now, I don't think we would design it in that way that bifurcates acute and chronic because very old people as a rule don't need heart transplants, they need health aides. So that would be number one on my wish list. I don't see it happening.

Number two on my wish list would be that all of the different elements of is that you as the adult child have to understand - the entitlements piece, the medical piece, the residential piece, the legal piece, the financial piece - they all kind of exist in their own separate silos and there's no central repository for information. You have to untangle each one of these, and I kind of visualized them as silos. You have to crawl inside each one of them separately and see how they work.

MARTIN: You know, finally, before we let you go, your book is called "Caring for Our Aging Parents - and Ourselves." The caring for yourselves part, is that something that a lot of people trip up on? Is it the kind of thing that causes resentment that tears families apart?

GROSS: I think almost...

MARTIN: Is there something you can give you some advice on about that?

GROSS: Yeah. I think it's something that almost nobody succeeds at. And I didn't, frankly, do a very good job of it. It never would have crossed my mind to go on a four-day week and my mother's physical therapist not suggested it. And it was then my mother's nurse, who said don't tell your mother because she will feel so guilty that this is so hard for you and that it's going to cost you money, pension, benefits, all of that stuff. So, you know, protect her from feeling guilty. In retrospect I think, you know, more than the managing your time or making sure you're exercising or eating or going to a yoga class or getting your nails done or, you know, whatever it is that relaxes you, if you will.

MARTIN: And giving yourself permission to do it, right?

GROSS: Yeah. Well, it's very hard to give yourself permission to do it. I actually think - and again, these generalizations are onerous - but I think men are better at compartmentalizing. And my brother was really great at doing what needed to be done and also really great at not worrying and obsessing in the in between time. He sort of shut that part of his brain on and off and was just as effective as I was at the doing and much more effective than I was at taking care of himself.

MARTIN: But I do have to ask, and again, we're generalizing, is that because men don't expect to be and are not judged in the way that people judge women. If anything goes wrong do people call the brother or do they call the sister?

GROSS: They call the sister.

MARTIN: And who do they expect to show up first?

GROSS: And then after you've done it who are all the little old ladies in the nursing home talking about all week, but the brother who showed up for 10 minutes. So there's some of that. The one thing that I wish I had understood while it was going on is honestly, truly understanding that there is only one end result here. I mean, they're going to die. So every tiny little decision that's thrown your way to make ultimately doesn't matter that much. Ultimately, it's really more about being loving and witnessing what's going to happen. Regardless of what you do, presence is ultimately vastly more important than what you actually do or don't do.

MARTIN: Jane Gross is author of the book "A Bittersweet Season: Caring for Our Aging Parents and Ourselves." She joined us from New York.

Jane Gross, thank you so much for speaking with us.

GROSS: My pleasure.

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