As part of Morning Edition's Family Matters financial literacy series, Renee Montagne talks to Jane Gross, author of A Bittersweet Season, about caring for her aging mother, and what she wishes she had known before she started.
RENEE MONTAGNE, HOST:
In our series "Family Matters," MORNING EDITION is exploring the pressures facing baby boomers who live in multigenerational families. Yesterday, we heard from Natasha Shamone-Gilmore. She's 58 years old; lives in Maryland with her husband, son and her father, who's 81 years old. She spoke to NPR's David Greene.
NATASHA SHAMONE-GILMORE: So in the morning, my head is spinning because I'm thinking about what all has to be done.
DAVID GREENE, BYLINE: What kind of paperwork? What is there?
SHAMONE-GILMORE: I still need to get a will for my dad. I still need to get power of attorney.
GREENE: Does anyone help you with this? Like, is there...
GREENE: ...one person who can help you through...
SHAMONE-GILMORE: I don't get any help, really.
MONTAGNE: For any grown child, or a family, who takes in an aging and ailing parent, it can be emotionally overwhelming and financially draining. Jane Gross, of the New York Times, went through this herself. She cared for her mother in the years leading up to her death at the age of 88, and has written about that experience in her book, "A Bittersweet Season." And thank you for joining us.
JANE GROSS: Thank you very much for having me, Renee.
MONTAGNE: Give us a thumbnail of your experience. When was the moment you decided to take over your mother's care?
GROSS: She had been living in Florida for a long time. Her health rather suddenly started to decline. My brother and I both lived in the New York area, which was the family home. And we all decided that this would be a much more manageable event if we were all in the same place. And I think we also understood that, you know, there was probably a limited time left, and it would be nice to spend it closer to each other.
MONTAGNE: And when you thought of limited time, were you thinking in terms of a few years of care?
GROSS: I - tell you the truth, I wasn't even really thinking that clearly. I was panicked more than I was thinking clearly. I just knew we had to do something and whatever it was, it would be easier if I didn't have to jump on an airplane every time.
MONTAGNE: Your mother passed away nearly a decade ago, in 2003. And she was in your direct care there in New York for several years - four years before that. Looking back, what do you know now that you wish you had known then?
GROSS: Well, I was under the impression that Medicare was universal health care for people over the age of 65. I had no idea that the kind of long-term care - as opposed to acute care - that my mother, and the vast majority of very old people, need isn't covered by Medicare.
MONTAGNE: That, I think, will be a surprise to most people, because the sense is that once you get to the age where you're covered by Medicare, pretty much all your care is covered.
GROSS: If my mother had needed a heart transplant or a hip replacement, Medicare would cover that. Medicare does not cover what's known as custodial care, which means home health aides. It means assisted living. It means, basically, all of the stuff that makes it possible to be old and be looked after - you know, short of being cut open and fixed in some way.
MONTAGNE: How much of that sort of care, then, did your mother need? And what, then, happened - who paid for it?
GROSS: Mostly, my mother paid for all of it. By my very rough estimate, in the last nine years of my mother's life, she spent more than $500,000 out of pocket. At six months before she died, she technically ran out of money, which then entitles you to Medicaid. So once my mother was essentially deemed destitute, the government paid for it.
MONTAGNE: What about long-term care insurance? We always hear about that. A lot of people avoid it or postpone getting it, but you do think that it has a place in assuring a person, or a family, that they will be taken care of should, you know, one end up in a nursing home or need other long-term care.
GROSS: Truth is somewhere in between. I think that people regard it as a panacea when it isn't. And my mother's long-term care policy, which had $150-a- day benefit, goes to the nursing home - although rarely, if ever, is it enough to cover the nursing home.
MONTAGNE: Now, just before we started this conversation, we heard Natasha Gilmore saying she had no one to turn to for advice. Who did you have counseling you through this?
GROSS: In the early stages, nobody. I eventually hired a geriatric care manager who unraveled virtually all of it, and it was still like that lady was talking about. The lawyers don't know anything about the money. The money people don't know anything about entitlements. The entitlement people don't know anything about residential choices. You spend most of your life on the telephone.
MONTAGNE: Is there an example of a single bad decision you made that you think, boy, that was a bad decision?
GROSS: Yeah. I neglected - I'm embarrassed to say - to find my mother a primary care physician in New York before moving her. I discovered it's almost impossible to find a new one for somebody who is past Medicare age because Medicare pays doctors so badly that they don't generally fire their existing patients, but they will very rarely take a new Medicare patient.
MONTAGNE: Given everything that you've just said, what about what one might even call the bright side of an extended decline?
GROSS: Yeah. I mean, I think that there's a huge bright side. In my case, I had a very difficult relationship with my mother - which, because of how long this lasted, and because of how hard both of us worked at the relational part of it, we had a completely different relationship by the time she died. And it's those memories, and sort of that mother, that I take away with me.
Also, my brother and I had a difficult relationship, and I'm not going to pretend it was easy while it was going on because it wasn't. But my brother is now my best friend. I don't think that would have happened otherwise.
MONTAGNE: Thank you very much for sharing this with us.
GROSS: Well, you're very welcome. I wish everybody who's going through it right now courage, and an easier time.
MONTAGNE: Yes, well, thank you. Jane Gross is the author of "A Bittersweet Season," and founder of the New York Times blog The New Old Age. Transcript provided by NPR, Copyright National Public Radio.