A Caretaker's Conflict: Love, Resentment Collide
JOHN DONVAN, HOST:
Sandra Tsing Loh confesses to a moment of frustration in which she surprised herself by screaming: I want my father to die. She loves her 91-year-old dad. And like many children who are now caring for their aging parents, her relationship with him is complicated. In the piece she wrote called "Daddy Issues" in this month's Atlantic, Loh touches on the real difficulties of caring for parents who are aging and sometimes ill, the conflict between feeling obligated to care for somebody who cared for you, the resentment of the financial burden and the knowing worry that you're neglecting your own kids and your own life for the sake of your parent, feelings that it's difficult to fault, but they're nevertheless fraught with guilt.
In the next two decades, tens of millions of the youngest baby boomers will be turning 70. People are living longer than ever before, and they include our parents. So we want to ask you: If you have taken care of an aging parent, have you actually lived this internal conflict? It's a tough one. And we would like to hear from you. Our number is 800-989-8255. Our email address is firstname.lastname@example.org, and you can join the conversation at our website. Just go to npr.org and click on TALK OF THE NATION.
Well, Sandra Tsing Loh joins us from NPR member station KPCC in Pasadena, California. Sandra, it's nice to have you with us.
SANDRA TSING LOH: Well, thanks for having me, John.
DONVAN: So when you screamed aloud that you wanted your father to die, you were talking with someone and you shocked that person. You also shocked yourself, it seems.
LOH: Yes. And I think that many of us are in a peculiar position, that we just - all of our, you know, therapy - you know, I'm 50. I've been in therapy for several decades. You know, you have this narrative of you rebel against your parents in your teens. You're 23, you break away. You're 33, you become friends with them. You're 40s, now you have children, so you feel nostalgic. You make your peace with the Kubler-Ross stages. But now, some of us are at a point where, you know, it's like - it's open-ended how long our parents will live.
Our children may leave the nest, and we may still be taking care of these elderly people. You know, over the - 85 and older is the fastest growing demographic. And what that becomes is very complicated. And I think many of us are finding as we enter this unbelievably expensive - the care, you know, for my father and his wife is like $10,000 a month in caregivers, just to keep them sort of off the street. Because the thing is even though my dad is 91 and has Parkinson's, is in a wheelchair, he's incredibly active and he wheels himself down to the bus and goes to lectures at UCLA and sort of still is all over the streets of Los Angeles.
Police are bringing him back at various points of the day. So you have to have a caregiver chasing them at, like, 18 bucks an hour. And it's - you go - this is something we never anticipated...
DONVAN: It's the word...
LOH: ...and how do we deal with it?
DONVAN: The word burden comes to mind, and then it's not a nice word to use about our parents.
LOH: It isn't, and it's a hard thing, because we could just let the police bring, you know, my elderly relatives who are wandering home every day. But you don't want to have that burden on society. And then often, people will say, just put him in assisted-living. But if, you know, elderly folk don't want to go, you kind of almost have to sedate them out of their minds and then handcuff them and drag them away. And that's a very hard moral decision to make just to make it more convenient and to make it somewhat cheaper.
So to give them their freedom as much as they can, it can be really expensive and time-consuming, and it's - every day, you're just full of angst and ambivalence about it.
DONVAN: Well, speaking of ambivalence, what really complicates this, I think, two thoughts I have, one is - number one, these are the people who took care of us when it wasn't particularly fun necessarily...
DONVAN: ...to be taking care of us. Number two, give us enough years, and we're going to be in this situation, well, and we want to be taken care of. We will become the burden ourselves. And if we're feeling now towards an older generation that they're - that we have to carry them and we resent, that it that it suggests we're in for - be causing an awful lot of resentment ourselves.
LOH: Well, and I think, John, what's interesting about that is that - and I've talked frankly with many other people in this situation going, OK. My parents took cared of me from zero to 18, and I lived with them. I lived under their roof. I did everything they told me to, and then I was out. We may take care of our elderly parents for 20 or 30 years because the longevity is so much longer now. They don't do what we ask them to. They're not under our house. They're not under our holiday schedule, so it's actually in this book that I talked about, Jane Gross' "A Bittersweet Season," in The Atlantic. She talks about the mommy track versus the daughter track.
And although parents, we complain about our children and how tough it is to find day care and good schools, et cetera, kind of the daughter track is far more open ended and has no rewards, you know, at the end except for death. And it's longer and it's unpredictable and it's a totally different track people are experiencing now.
DONVAN: We can see sometimes by the number of phone calls that light up the switchboard how active a topic this is. This one is very active. We have a lot of people who want to stand by and talk with you about this, and I want to go first to Evan in Baltimore, Maryland. Evan, hi. You're on TALK OF THE NATION.
YVONNE: Hi. My name is Yvonne.
DONVAN: Oh. I apologize.
YVONNE: That's OK. In 2000, my mother's heart suddenly stopped. And I took care of her for 10 years, and towards the end of that - and that was total care. That means, you know, bathing, making all of her meals, changing her diapers. I also work in long-term care for a corporation called Genesis. I'm a registered nurse. And on top of that, my youngest daughter gave birth to a child that she really couldn't take care of herself. So I was doing, wow, all of that.
LOH: Oh, my God.
(SOUNDBITE OF CRYING)
YVONNE: And I got to tell you. There were times I thought I was going to lose that. Just talking about it now brings up so much emotion. I'm so sorry but...
LOH: Oh, my God. I feel like this - I think it's so good. I'm just like completely weeping as well, and I think it's good to just get it out there. Sometimes words cannot express...
DONVAN: Yvonne, is your - Yvonne...
YVONNE: Let me just say this while I gain my composure. What (unintelligible) is how angry I felt. I could not - I felt so angry, and I'm ashamed of that.
DONVAN: So you were angry about being angry, it sounds like.
(SOUNDBITE OF CRYING)
YVONNE: Yes. Yes because it was my mother.
DONVAN: Yeah. Hey, Yvonne...
DONVAN: Let me just step in because I want to give Yvonne the break of silence. So, Yvonne, listen. Thank you for sharing that. I don't want to push you anymore...
YVONNE: Your welcome, guys.
DONVAN: ...because you made a very, very powerful statement there. And thank you for that. Go ahead, Sandra.
LOH: Well, I think there was two things - that she didn't get the support around her that she could have had, but I think that's what we are still looking at our parent as my mother, my father, where, in fact, at some point, you have to just look at them as this being. Not like a plant or a piece of furniture or a pet or something to just separate these things out because our childhood, you know, dramas and emotions that come up, but they're still very active as for adults. And I think just what Yvonne is going through is just so common.
DONVAN: I know, though, that there were going to be listeners who feel - and maybe at some point you agree with them on this - who are going to feel, hey, that's the deal. That's the contracts within a family. They took care of you. You take care of them. I know it's not easy. I know it costs, but family is family. And I'd like to hear your view on that.
LOH: In the year 1900, you know, the life expectancy was about 40 in the United States, so everything was different. You know, now, it's, you know, it's into the - into the 80s, so nobody - were this really interesting, unique time almost of human biology, or because of our lifespans have extended by several decades now. It kind of rejiggers the whole notion of, you know, kind of marriage, children, family, and caregiving and even financially at some point. I think many of us - if I am 50, I have two girls, would've put them through college. I'm actually - our family finances are going to go to cut up the children of the caregiver of my dad (unintelligible).
DONVAN: Sandra, if you're a listener now listening to this program, and you're 91 years old and you're weak and you need the help, what - how do you feel? What are you supposed to feel about this?
LOH: Well, I mean, I think that, for instance, for my father, let me say, if there's a 91-year-old person who's sentient and livid and listening to this, I think that's great. My father is in a position where he is sort of unbrokerable(ph) about these things. We have taken - you just wait for your caregiver to get there at 8 in the morning. No. He'll get on the bus at 7:45 and flee the caregiver. So I think my father is a particularly irascible person that you can't reason with about things.
But if there's a 91-year-old person who one can reason with through all this, so I think that's kind of wonderful and great. But some people when they get older like my dad, they just lose more. They don't want to broker. They don't want to make any deals. They don't want to follow any instructions. And so it's like kind of riding a wild bucking bronco. So it's not every one - 90-year-old.
DONVAN: Yeah. I just don't want that sentient person who's 91 listening to this to feel that we're talking about us and them, and they are them and not part of us.
LOH: Right. Right.
DONVAN: Mark in Portland, Oregon. You're on TALK OF THE NATION. Mark, hi. You're on the program.
MARK: Oh, hello. Thanks. This is a really great topic because I think that the children who end up taking care of their parents really - in some cases, the parents are quite grateful. In other cases, they're very ungrateful...
(SOUNDBITE OF LAUGHTER)
MARK: ...because of mental illness and so forth. In 2006, I began intervening in my mother's life because I was pretty clear she'd become a hoarder. And by 2008, I had her extracted from her house where she was then declared a disabled person in Illinois. Along with that, at least in the state or the county of Cook in the state of Illinois, there is a tremendous legal burden that comes along with being the guardian. You have a certain amount of - well, actually, a severe amount of court supervision. There are - you have to have your own attorney, a case manager is assigned. And there's a guardian ad litem who's there to speak to make sure that the disabled person has a voice. In my case, you know, I have all of those things going on, so I have all those people to answer to. Plus, I have the ongoing care for my mother. Luckily, she has the financial means to be supported.
DONVAN: Depends on how long she lives though, doesn't it?
MARK: Pardon me?
DONVAN: That depends on how long she lives. I mean, I do know of families who felt that they were supported when the money was needed at age 85. And then 10 years later, the money ran out.
MARK: Yeah, that's true. We've done our (unintelligible) report, we know. We're pretty lucky that way.
DONVAN: All right. Thank you very much, Mark, for your call. We really do appreciate it.
DONVAN: I want to read an email from Susan who writes: My father lived with multiple sclerosis for 22 years. I was 28 when he died. I never saw my mother cry until that day, and it was from relief not sorrow. She was exhausted from tirelessly raising four children with a totally disabled husband. I changed diapers and emptied urinals from the age of 10. We loved our father but it was a relief when he passed away. That's an incredibly honest, incredibly honest thing to say because...
DONVAN: You know why? Because you're not supposed to say it. And you're in that realm as well, Sandra. I think you're saying things that are supposed to be taboo. And in the article - and I really do recommend that people read it - you do this very skillful thing of making it feel tongue in cheek when it really isn't. And is that because you know, you're aware of the line that you're walking on this?
LOH: Well, I think I'm - I have never been afraid to say things that I'm feeling and other people are feeling to put it out there even if it doesn't sound pretty. But I think also, really honestly, this topic that's going to be around with us for a long time, this elder care, I mean, it's just more and more people are going to be experiencing it. You know, to be honest and with Yvonne who was like - it is so emotional and can be so sad and sort of almost hilariously tedious because something can begin with, you know, a parent kind of like stubs their toe in the shower. And that seems like nothing. And it becomes a four-year journey of medical things and problems.
So it's like even though I found some humor in it in a certain way, and I have siblings who do - you know, we do talk to each other with a certain gallows humor about it. I think you actually have to, if possible, laugh about it sometimes. You can because we're going be doing this for a long time. And, you know, one of the points I make in my article, which is just totally like my dad, is like every day he wants sex. And it's like - we're just like, oh. It's the last thing that you want to hear, but he's - he's ready. He's calling me, do you have any girlfriends? And it's kind of like ghoulish, but it's kind of - if you know my dad, it's kind of like hilarious that he's still out there.
So at a certain point, you know, I think as opposed to crying because I have a father who doesn't remember the names of his grandchildren, not because he's senile, just that's it's not really not interesting to him. He wants to eat ice cream and go to chemistry lectures and sing opera loudly in front of strangers. It's like, if I can just kind of take the notion that just look at this guy with the spirit to live, you know?
DONVAN: Yeah. He is alive.
LOH: Yes, he may bankrupt the family, but my kids can go to junior college. Look at that spirit to live. That's all I'm going to get from that. So that's kind of why I try to add some, you know, different twists and turns to it so we just don't weep our way through 400 page books.
DONVAN: You do it very well. You're listening to TALK OF THE NATION on NPR News. Back to callers. Mary in St. Louis, Missouri. Hi, Mary. You're on TALK OF THE NATION.
MARY: Hi. I want to thank your guest for giving us permission to feel this.
DONVAN: And you feel like you need permission, sounds like.
MARY: Well, you know, we've been taking care of my mother. She was 105 in October.
LOH: Oh, my God.
Yeah. We still have her at home. And the state only gives us three eight-hour shifts a week of an aide, which we pay $333 for.
Oh, my God.
MARY: That's all the help we get. So the rest of the 24/7 care is apportioned out to different volunteer family members. And luckily, I'm the youngest of 10 children, so we do have more help than most. But the point I wanted to raise was I think the general public should be made aware that there is very little help out there from the states. It differs from state to state. If you want to keep your parent at home, every single roadblock we've gone through, they say, well, you know, they would take care of her if you put her in a nursing home.
MARY: Well, my mother isn't dying. She's actually been dropped from hospice twice. And...
LOH: Oh, God.
MARY: ...she survived the six-month term. And...
DONVAN: Mary, I have to interrupt only because we're completely out of time. But I want to thank you for your call and take that your point is that help is needed, that it's very, very difficult dealing with them.
MARY: Lots more help.
DONVAN: All right. Mary, thanks very much for your call and to everybody who's talked with us so honestly and emailed. I really want to give you a heartfelt thanks for that. And also to Sandra Tsing Loh who joined us from NPR member station KPCC in Pasadena, California. I need you to tell me in 10 seconds, Sandra, seriously, 10 seconds, do you want to live to be 100?
LOH: Oh, I don't know.
(SOUNDBITE OF LAUGHTER)
DONVAN: All right. You...
LOH: Yes. Yes. Yes. Yes.
DONVAN: Yeah, you do, you're saying.
LOH: And I won't be - and I'll be a pleasure to my children, of course.
DONVAN: All right. Yeah. There's a link to your piece in The Atlantic on our website. Just go to npr.org, and click on TALK OF THE NATION. Tomorrow, what information companies collect on you and does it matter? Join us for that conversation. This is TALK OF THE NATION from NPR News. I'm John Donvan in Washington. Transcript provided by NPR, Copyright NPR.