ANDREW:
Hello, and welcome to the American Cancer Society's Cancer Survivors' Network, a service created by and for cancer survivors. In Seattle, I'm your discussion leader, Andrew Schorr.

Today's topic: caregivers-adults with parents who have cancer. On the phone with us are four women from across the country, caregivers whose mothers either have or had cancer. Two of the women are cancer survivors themselves, and two work in cancer research or for cancer organizations. So this group is very familiar with issues related to cancer, separate from their caregiver responsibilities. Over the next few minutes, we'll discuss such issues as: learning to deal with well-intentioned but poorly-informed family and friends; fighting the isolation and shame that might be felt by your parent; helping parents get good information to ensure strong survival; what to do when you disagree with your parent's treatment choices; and the unique perspective of being a caregiver for a parent and also a cancer survivor yourself.

Joining us today as we begin is Carolyn from Atlanta, Georgia. Carolyn, thank you for being with us. I know your mother just finished her treatments for colon cancer. I guess the ironic thing is that you're a researcher with the Centers for Disease Control in Atlanta, and you've been dealing particularly with this area of colon cancer. It's really quite strange that here's your professional expertise, and then it winds up with your mom.

CAROLYN:
That was a great irony, because up until two years ago I had built a career in HIV-AIDS research. I think the angels took me by the hand and led me into colorectal cancer research, because three months after I declared that as my area of specialization, my mother was diagnosed.

ANDREW:
How is your mother doing now?

CAROLYN:
She is recovering from a very difficult, very challenging treatment experience. She had surgery, she had intense radiation, and a long period of chemotherapy, and she is making the slow recovery from that assault on her body.

ANDREW:
You're in your mid-50s. How old is your mom?

CAROLYN:
She is in her early 70s.

ANDREW:
How has this diagnosis changed your relationship, if at all?

CAROLYN:
It's had a tremendous impact on our relationship. My mother is a very strong, independent woman, whose greatest fear in life was becoming dependent on some other person, particularly a family member. And she chose to become dependent on me. She had to become dependent on me.

ANDREW:
And she's in Atlanta too?

CAROLYN:
That's correct. And it was a very powerful experience for her because now she associates dependency, under some circumstances, with care and love and respect. Previously, she associated dependency with betrayal and abandonment. So it's been a powerful learning experience for her and for me.

ANDREW:
Well, let's talk about you. How has it changed your thinking? When this cancer that you deal with professionally, and study, strikes your own family? And you deal with the very human and family issues side of it.

CAROLYN:
Well, I had a very strong academic or intellectual understanding of colorectal cancer. So I thought I had some insight into what the experience was like for a patient. How off the mark I was. For example, I knew intellectually that colorectal cancer, even though it's the second-leading cancer killer in the United States today, is not on the American public's radar screen. I knew that people suffer in silence and isolation. But until I saw that in my mother, I didn't realize how debilitating it was. How much shame and embarrassment and disgust she felt about her condition and how totally apart she was from other sufferers.

ANDREW:
Why is something like breast cancer now talked about all the time and is very out front, and yet your mom felt like there was some shame associated with colorectal cancer? Why? What's the basis of that?

CAROLYN:
Well, I am old enough to remember when breast cancer was highly stigmatizing and shameful as well. It takes more than public information campaigns to mitigate that stigma. It takes a real social movement, the organization of consumer groups, patients who have experienced this, and their caregivers. Breast cancer has had that social movement, so it's practically dinner table conversation now. We're just starting to bring colorectal cancer out of the closet.

ANDREW:
Is it that it deals with a bodily function? She feels that maybe she did something wrong, had the wrong diet or something, and brought this on herself somehow?

CAROLYN:
You're exactly right. And because it concerns that part of the body that we don't talk about in polite company, a part of the body that many people associate with a lack of cleanliness. Because it's all about that, it makes it even more shameful. And she is concerned, even now, that she has done something to bring this on.

ANDREW:
What do you say to your mom to get her past that?

CAROLYN:
You know, that's one of the biggest challenges of being the caregiver for someone struggling with this. You have to learn when to speak, and when to shut up. When to let that person simply ventilate his rage, his fear, his terror.

ANDREW:
And this is your mom. You came from her so she can kind of push buttons if she wanted to put you in your place.

CAROLYN:
Right. So we have learned over the last year to be more at ease with each other. Typically, when my mother hits a crisis I just allow her to ventilate whatever she's feeling, without trying to jump in and interrupt it. Then after she's gone through that volatile emotional expression, I start quietly reframing, reinterpreting. Helping her to get a more realistic perspective on what's happening to her.

ANDREW:
Now this came up recently, I understand. There were some test results that were unsettling and your mother "lost it," if you will.

CAROLYN:
She went absolutely ballistic, she was so terrified. And the impulse to jump in and try to take that fear away was very strong. I had to just nail my butt to the chair and sit there and be silent while she went through all of her grief and rage. Then when she was spent, so to speak, then we could begin reinterpreting and reframing and help her put it into more realistic perspective.

ANDREW:
But that's got to be tough. Adult children who are dealing with a parent with cancer have various professional backgrounds. In your case, a public health professional. You deal with a lot of things in statistics and very reasoned thinking, and here you're going through this with your mom. How do you step out of the professional mode and acknowledge the heavy-duty emotion of it? Do you allow yourself to be her child, her friend, her support, and not be this more impartial thinker?

CAROLYN:
I have to tell you, I think the thing that was most helpful to me in learning how to play that role with my mother was listening to other patients' stories on the Colon Cancer Alliance web site. Because I could read about their personal emotional struggles with spouses and parents and children. That was very helpful to me in moving back from that kind of detached intellectual perspective to a more human perspective.

ANDREW:
Well, we'll talk some more.

Now let's hear some other stories of adult daughters and their moms who are dealing with or have dealt with cancer. In San Diego we have Linda who joins us. Linda, you're 40, and you do some work with the American Cancer Society. Your mother has breast cancer. Tell us a little bit about your mom, her age, how recent this is, and how this has affected your relationship.

LINDA:
Okay. My mom's about 60, and she has led a very healthy life for the most part. So it was a complete surprise to us. There's no family history, nothing like that, so it was really a surprise to us when she was diagnosed with cancer. I always hear people say, "I didn't think it could happen to me," and that's exactly how I felt. I just was amazed that it had actually touched our lives that way. When I work with it all the time, you'd think I would not be so surprised but I really was. Initially we both were in shock. And we worked through this together. Her husband is a wonderful support, and so the three of us kind of work through this together. I've been supportive for my family, who don't live in the same city as my mom and I do.

I think the biggest change was that while I have a lot of intellectual information about it, I realized that the most important thing I could do was to really be there for her. To let her talk about things, and to respect her choices. Because they didn't happen to be the same ones I would have made in terms of her treatment.

ANDREW:
I understand she's quite a believer in alternative approaches. Why was this? And have you had fights about it, or how have you worked this out?

LINDA:
Well, initially the doctor recommended that she have chemotherapy and she was very resistant to that. She wanted to boost her immune system and she felt that chemotherapy was going to drag it down. And I work for the Cancer Society and a lot of our information says that alternative medicine isn't necessarily the best choice. We don't have scientific studies to prove that doing one regimen is going to improve the condition. I was really very scared, frankly, that the choices she made might end up hurting her chances for long-term survival. So, initially, I made sure that she had the most accurate information she could get. We got information from the American Cancer Society, and the National Cancer Institute, and other resources. I tried to make sure that she was as informed as she could be.

ANDREW:
Was she open to that?

LINDA:
Uh huh. Absolutely. In fact, she learned within a very short period of time how to access information on the Internet, and started looking up journal articles and any other articles she could possibly find. She became sort of a voracious information gatherer.

ANDREW:
Okay, but then she's headed toward her choices with her own particular bias. What happened? Was there sort of a D-Day?

LINDA:
Yeah. There was a point when I realized that she was not going to do chemotherapy. She called me and she said, "I talked to a doctor in Mexico." I just was so disheartened and so scared and upset at that point, and it was all I could do not to scream and yell. I couldn't, I was at work. I was really beside myself and talked to some of my friends who are cancer survivors. What they said to me was, "You might choose chemotherapy if you had cancer, and your mother might really have a hard time with it. You wouldn't want her to tell you that's not a good plan or that's the wrong thing to do, after you've made the informed choice that you've made." I finally realized that she was going to have to live with the choices she made. And ultimately, if she made the choice, she was going to be happier with her result and would feel like she contributed to her survival. And it wasn't my place to give her a hard time about it. My job at this point, once I made sure she was informed, was to say, "Okay. You know what, I love you and I know that you know I don't agree with your treatment choices. But I love you and I want to be here with you, for whatever, as long as you can be."

ANDREW:
But you were feeling also that she was making a choice that, while she might feel good about it for herself, might take her away from you and your kids. You want to respect her but it's still hard.

LINDA:
Yes, absolutely. That was really hard. When I finally really came to terms with it was when I realized that while science has answers, it doesn't have every answer. She could do every single treatment regimen and still be taken away from me. So it was better for us for her to make her treatment decisions and for me to say, "Okay, maybe what you're doing might have some validity." I got to the point where I could accept her choice as an individual, and her right to choose. And I really accepted the fact that she's an adult and she can make her own choices. I have to live with choices all the time. I'm not quite sure how to phrase it except that she's an adult, she had to live her life and make her choices. I may not make the same choices, but I have to let her experience that.

ANDREW:
Did your mother seem to care how you felt?

LINDA:
She really did. We had some very tearful talks about it and I was very honest. I said, "I'm just so afraid that by not doing chemotherapy, you're not going to survive and you're not going to be in a rocking chair watching your great-grandchildren grow up." And I have fully expected, my whole life, that she'd be around until she was 90 or 100 or more. She said, "What I really don't want this to do is to tear us apart, because we've always been very close." I think this was one of the first times in our whole relationship, even teenage years, where we really disagreed on something.

We found a common respect and a common ground. Basically, she does what she's going to do, and she also does some of the conventional treatments. She's on tamoxifen and things like that, so it's sort of a compromise in a sense. And I think that was partly due to the fact that she knew how strongly I felt about her choices.

ANDREW:
Linda, let's bring in Gloria from Hilton Head, South Carolina. Gloria, I know you're 42, single, have two kids at home, and you're a breast cancer survivor yourself. And your mother has dealt with colon cancer. Right?

GLORIA:
That's correct. She died eight years ago, from colon cancer. She was diagnosed two years before she died.

ANDREW:
Tell us about that and what you learned from that experience, looking back on it. About the relationship between the parent and an adult child who loves and wants to help the parent. The conflicts that can come up. What's helpful and what is not helpful? What was your experience?

GLORIA:
Well, first of all, I was not living in the same city with my mother, so I was not a day-to-day caregiver for her. In fact, I lived in another state.

ANDREW:
Where was she?

GLORIA:
She was in Texas.

ANDREW:
And you were in South Carolina?

GLORIA:
In South Carolina, just a week before she was diagnosed, we had lost everything we owned to a hurricane. So it was really bad timing all around. I was able to spend several months with her when she first had surgery, and her first few months of chemotherapy. But I wasn't with her day to day for the long haul. My father actually took an early retirement to be her primary caregiver.

ANDREW:
And I've been told that your mother tried to shield you, to some degree, from the pain of the experience that she was going through.

GLORIA:
Yes, yes. And I didn't even realize how much pain she was going through until I myself went through chemotherapy and radiation and surgery for breast cancer. Now, knowing what it really feels like, I realize that she was very stoic about the whole thing. She didn't express to me at all any of her emotions about it, other than she wasn't afraid to die. And I truly believe she wasn't. She had a very strong faith. In fact, I think she almost looked forward to it.

ANDREW:
For you as a daughter, with a parent going through this, and being at a distance, and your mother being stoic, there must have been frustration. Was there also guilt at being so far away? What sort of things were you feeling?

GLORIA:
There was frustration and guilt on my part, yes. I wanted very much to be with her more, and also I wanted to be a caregiver for her. But she always kept that line that she was the parent and I was the child, and never the two shall meet. We never moved comfortably into a role of friends.

ANDREW:
For our listeners who are going through this, where that's where the relationship started and has been for many years, is there any strategy or any words of advice that you would give to allow you to get in behind that closed door? To say, "Mom, I'm an adult now and I can help you. I want to be a support to you. I'm not just that little kid from years ago."

GLORIA:
Well, I think what you just said is a good idea. To actually state that to your parent and let them know that you are adult, and capable of actually giving comfort to them. At the same time, I think it's important to live our lives the way we choose to, and allow others to live their lives the way they choose to. And to die the way they choose to, as well. If that is in fact their choice.

ANDREW:
So show them the respect to let them make their own decisions.

GLORIA:
Exactly. Show them the respect to let them make their own decisions. And I didn't push the issue because I didn't want to force her into a role reversal, if you will, just to satisfy my own guilt or need to nurture her.

ANDREW:
So you didn't want to become the parent suddenly and make her your child?

GLORIA:
No. I didn't want to force my will upon her if that was not what she chose. But the last week that she was alive, I was able to spend that time with her, along with my other siblings, and it was a very special time. It was actually quite incredible because we knew that she was going to die, and I felt she needed to hear from all of us that she did a good job. Her parenting was the most important thing in her life, and she took it very seriously. She needed to hear from us that she was a great mother.

ANDREW:
Kind of a completion to her life.

GLORIA:
Yes, and in a way we were giving her permission to let go, for her to go on. Before she lost her ability to speak, I would tell her that she was a wonderful mother and I loved her dearly. I remember her very feebly saying to me, "Was I really?" I said, "Yes, of course."

ANDREW:
Gloria, you have kids yourself. I want to ask you about two aspects of this. First, with the grandchildren, were they involved? What kind of communication did they have with your mom, as she was dying from colon cancer?

GLORIA:
Minimal. In fact, my daughter wasn't even born yet. My son was just three, and he didn't go with me. He remained with his father. I made that decision to leave him with his father while I went to be with my mother because, to be honest, I didn't want the distraction of having to care for a very young child. I wanted to give my full attention to this momentous occasion, to my mother moving on to higher things. I wanted to be fully involved in that experience with my siblings and my father.

ANDREW:
Were there other grandchildren around, though, that she had contact with?

GLORIA:
Yes.

ANDREW:
Has there been something that you have learned in this experience with your mother and cancer that has made you think about the relationship that you would want with your kids if cancer recurs, or somehow becomes more pressing in your life? Would you want it to be different? Do you have thoughts on how it should be or how you'd like it to be?

GLORIA:
Well, to be honest with you, I haven't thought much about recurrence because I don't believe I'm going to have one.

ANDREW:
I hope that's true.

GLORIA:
I haven't really planned in that direction at all. But I had thoughts, of course, when I was first diagnosed and first started treatment. "Oh my God, if I die, who's going to raise my children?" Or, "How am I going to present this to my children?" But, after having first been diagnosed, I did talk to my children about what was happening. I was very honest with them. I didn't overload them with information or give them statistics or things that they couldn't comprehend. But I didn't try to hide anything from them. I let them know that Mommy had a lump and it could be cancer, and I was going to have to get it cut off. So they came and touched my lump and told it bye-bye. I tried to explain things to them in terms that they could understand. But I made sure before I talked to them about any of it that I could do it without showing any fear that I had. In other words, I had to work through my own fears before I presented anything to them. Because I knew that they would handle it the way I was handling it. They would look to me to see if this is really scary. You know, "What's going on here?" So when I showed them my scar, my mastectomy scar, I made sure that I could look in the mirror without crying. Before I brought it to them, I worked through my grief on my own and not with them. That's probably a carryover of how my mother raised me, you know. "I'm the parent, they're the children. I'm here to supply their emotional needs."

ANDREW:
You're your mother's daughter.

GLORIA:
Yes, yes, it's true.

ANDREW:
Well, Gloria, let's invite Fern, from Portland, Oregon, to join us. She too is a breast cancer survivor. Her mother is still living and a breast cancer survivor herself. Right, Fern?

FERN:
Right.

ANDREW:
And you're on the West Coast, and your mom is on the East Coast?

FERN:
Yes, my mom lives in New York, and I live in Portland, Oregon. You can't get too much further apart unless she moved to Miami.

ANDREW:
And I'm sure she says that to you. "You couldn't move any further, could you?"

FERN:
Well, we try every year to get her to move to the West. Actually, right now she's right next door to you, Andrew. She's visiting in Seattle.

Her cancer was the year after mine, and that was really a very interesting phenomenon. My mother and I have a very unusual, estranged relationship. We haven't always spent most of my life together. We're in touch but not the way it sounds like the other women in the group have been with their mothers. We don't have a super-close relationship, although I still love her and certainly wanted to help her. But we're very different.

The first interesting thing about my mother's cancer is that my mother is extremely paternalistic in her viewpoint of physicians. So whatever a doctor says is gospel from the moment it comes off of his lips. There's no questions, there's no discussion, there's no second opinions, there's no other information that my mother wants to be exposed to. Whatever her doctor says, that's what she'll do. And that's difficult for me because I'm a health educator and I think people should have more information and make choices. The doctor is part of your team of health care professionals but he is not necessarily the decision-maker in the team. So we have that to challenge us.

The distance was of course interesting. And the other piece that's interesting about my mother is that denial is my mother's mode of dealing with everything. For example, 10 years before her breast cancer she had bladder cancer. She had it removed very successfully with just surgical cystoscopy and no chemotherapy, no radiation. From the day she walked out of that cystoscope, my mother pretends, or believes, that she didn't have cancer in her bladder. It never happened. So if I even bring it up, it's like, "Why do you bring up things like that? You make up stuff." So we have an interesting relationship.

ANDREW:
We often hear, and some women have said here, that there can be a new kind of relationship or a bond that a child and a parent will go through when this cancer experience happens. But it doesn't mean that the old "stuff" isn't there, right? It sounds like in your relationship with your mom, it's had its highs and lows, and that's still there. Even though you're both now breast cancer survivors.

FERN:
Yeah. We sort of have sisterhood of survivorship, on the days that she acknowledges she's a survivor. You know, the denial's pretty deep there. But it changed my frame of reference. It reminded me that although we haven't always been close, I've tried to build a relationship with her over the last decade or two. Certainly in exposing her more and more to my children and to my grandchildren. My mother's a great-grandmother now and she's very young, she's 67. She's a great-grandmother to my two granddaughters. And so I tried harder to help communicate with her in a way that she could hear and that she would be open to.

I try not to do what she considers scary stuff, like I never sent her printed information. For example, Susan Love's "The Breast Book," the common bible of women who've had breast cancer. I sent that to my mother early on in her treatment and she was angry, because she was afraid of that book. She was afraid to open it, because she thought something would jump off the page and say she was going to die. And then she wouldn't be able to take that information out of her head. She threw the book in the trash, and she was angry with me. So we can't talk about those things.

But, for example, I did take her shopping for a prosthesis. We almost had to trick her. My sister and I did it. We took her in Seattle and we tricked her into doing it because she refused to buy a prosthesis. She would only stuff Kleenex in there. And my mother is 67, which is very young. She's very fit and attractive, but she lives like an old immigrant woman. She's ashamed of her breast cancer, she's ashamed if somebody would know about it, she's ashamed of her body image change. It's a challenge because I'm just quite the opposite. Obviously, having about the things I've talked about on the other shows, I'm much more open.

ANDREW:
Fern, it sounds like your mother's got a pretty strong constitution. I mean, a strong will. And I know you do, too. So what happens when you knock heads? How do you get past that?

FERN:
We don't knock heads. I back down immediately with my mother. It must have to do with some of the old stuff from before. I consider my mother extremely frail emotionally, and, I feel, my sister too. Andrew, I feel if I were to stand up to her or oppose her in some way that it would be very destructive. She's just frail, and so I don't. If we knock heads, I let her win. I try to find other ways to get the information to her. For example, my sister's relationship with her is much better, so if I really want my mother to know something, I tell my sister. My sister usually can somehow tell my mother.

ANDREW:
That's like Carolyn's vision of nailing yourself to the chair, biting your tongue. You really look for the right moment and choose your words carefully as far as the way you approach something. I can understand that. Well, that's very good information.

Let me throw some questions out to the group. You may have dealt with your own cancer, or had friends your own age or even younger who've dealt with various illnesses. What's different about being a caregiver for, or being concerned about, a parent with cancer? Who'd like to try that first?

FERN:
I think my biggest concern with my mother having cancer is I really don't want her to die. And maybe for all children, it takes something very long-term before you come to grips with the mortality of your own parents. I think one of the other women mentioned she wanted her mother to live to 100 or more. And I think we all think that. That Mommy will always be there. How could that not be true?

ANDREW:
And when the diagnosis is a cancer diagnosis, does that have any special power or fear behind that?

FERN:
Well, cancer almost always used to mean dead. Having my own cancer, I certainly have reframed that definition in my own head. But for many years cancer was a death sentence. Of course, that's no longer true, and I'm very grateful for that.

ANDREW:
As you have families of your own and relationships of your own, when you are dealing with a parent with cancer and you're trying to be helpful to them, does it put stresses and strains on your own home. If so, how do you deal with that? Anyone?

CAROLYN:
I didn't deal with that particularly well. I expected my son and some other people who were close to the family to become more attentive, more actively involved, in my cancer and my mother's cancer and recovery than they did. For various reasons, they chose not to. Perhaps it was too frightening; perhaps they took seriously my mother's reassurances that everything was okay. It was hard to watch people pull away and to be left with the full burden of her emotional support.

ANDREW:
Fern, you mentioned you have a sister. I don't know about the rest of you. Maybe you could share that. If you have siblings, how did that relationship play out? You each had some role or some relationship in trying to support your mom with cancer.

GLORIA:
When my mom was diagnosed one of the biggest concerns she had was how to tell my brother and sister, who didn't live in the city. She wanted me to call them after she had told them. To kind of give them information. So I spent a lot of time with my sister particularly. She didn't have a lot of information about breast cancer, and to her breast cancer meant death. I could very confidently reassure her that in the case of my mom, who had a fairly early diagnosis, she probably would be fine and that we just had to take things one day at a time. But I tended to be kind of a person who softens the blow. To provide information and to be able to talk to my brother and sister.

My mother was particularly concerned about how to tell my brother, as they didn't have a very close relationship. I could help her through that by reassuring her that the most important thing was that they did talk and that if it made him pull away a little bit more then that was okay. Like you said earlier, having cancer doesn't necessarily make any relationship any better. And so I helped her to be able to feel comfortable with talking to him and helping him understand it. Anyway, I did spend a lot of time with my brother and sister, giving them information and giving them the updates, because I was in the same city with her. I could go with her to the doctor's visits, and explain stuff. They kind of used me for, "Okay, how is Mom, really? You know, I hear from her, but I want to know how she is really doing. Is she telling me everything?" That kind of thing.

ANDREW:
Did that role come to you because of you being in the same city, or because you were part of the American Cancer Society and so therefore you must be knowledgeable, or was it your birth order in the family? How did that come about?

GLORIA:
I think it was a combination of all three. I'm the oldest, I do live in the same city as she does, and they kind of had to deal with it on a long-distance basis. And the fact that I did work for the Cancer Society...they assumed I knew everything. The funny thing was that pretty much with the exception of my knowledge that an early stage diagnosis generally means a good prognosis, I found I needed to relearn a lot. The diagnosis kind of put me in a state of shock and I didn't know as much as I thought I did. Or maybe as much as I had known the week before. I've kind of learned through it with them. So I think it was a kind of combination of all three.

ANDREW:
Anyone else, concerning a relationship with siblings as your parent has cancer?

FERN:
Our issue with that was that when I had breast cancer premenopausally, that was a big shock to the whole family. But when my mother got breast cancer, a year later, my sister became terrified of her obvious increased risk. So there were those issues to deal with. I felt very guilty, like I had started this bad thing in our family, and then my mother confirming my mischievousness. I felt so bad for my sister. And I was trying to find different ways to minimize everything in her eyes so that she wouldn't be as terrified as she was, and still remains.

ANDREW:
And with breast cancer, because of some genetic links, that can be quite terrifying. And colorectal cancer, I would think, too. Right, Carolyn? Sometimes that's in families? And a parent gets it and then there are children who are worried for themselves as well as the parent.

CAROLYN:
That's correct. That's the minority of cases of colorectal cancer. But about 10 percent of new cases are in folks who have some kind of genetic link.

ANDREW:
Gloria, I have a question for you. You mentioned that you were with your mom for awhile after her diagnosis, but then she was in Texas and you were in South Carolina. How did you keep in touch then? Would you just make regular phone calls? What would be the quality of the communication to try to keep that bond alive, and be a support, even at a distance?

GLORIA:
Well, we did speak with each other regularly over the phone, and with letters as well. We communicated. And I think my mother enjoyed the fact that she had one child that was at a distance because it gave her a chance to play her role as being the stoic one all that more successfully. I couldn't see how bloated she was from the chemo. I couldn't see her on the days that she was sick, or she wouldn't get out of her chair if someone came to visit. She could just talk to me. And maybe it was denial on her part, trying to convince herself that she was healthier than she was. But it was difficult for me in that I felt guilty that I was unable to do more for her. Just because of the logistics of being in separate states. And also because of her, not unwillingness to accept help, but unwillingness to admit that she needed help.

ANDREW:
Did you play a role at all in any discussions about end-of-life decisions for her?

GLORIA:
Oh, absolutely, we all did. She was very accepting of the fact that her life, as she knew it, was ending. She helped to plan her funeral and she asked me which readings I wanted to read. She wanted me to read something and she gave me a choice of what I would feel comfortable reading from the readings she had picked. So, I played that part in it.

ANDREW:
And for a daughter then...your mom's being strong, probably in a very positive way, accepting what might lie ahead. How did you deal with that yourself?

GLORIA:
It was frightening to know that she was dying. It was of course very sad. But at the same time it was exciting because I do have a very strong faith that what we see isn't all we get. So when she actually died, I felt a sense of joy. I felt relieved. I felt glad that she was no longer in this incredibly sick body. I knew that she was free and that she was happy.

ANDREW:
And a lot of that came out of your discussions along the way.

GLORIA:
Yes.

ANDREW:
Well, I want to give each of you an opportunity to share some final thoughts for our listeners, who may well be daughters of parents with cancer. What you would want to leave them with. Carolyn, I'll start with you. Your mother has just gone through some pretty heavy-duty treatment for her rectal cancer. What would you say to other daughters or sons who are caregivers concerned about their parents? What would you like to leave them with?

CAROLYN:
I think to consider the judicious use of humor in your relationship with the ailing parent. My mother and I had never been able to laugh together, particularly about challenges to happiness or health. And we both for a time experienced rectal cancer, the treatment of it, as so awful, that we either had to learn to laugh about certain aspects of it or go completely crazy. And we did find humor, we did share some wonderful moments, and will continue to do that. And I never thought we would be able to laugh about such a thing. But we did, and it's been healing for us both.

ANDREW:
Very good point. Linda in San Diego? Final thoughts from you.

LINDA:
I think that a cancer experience is scary, no matter what you know or what you don't know. I think you can best support your parent by helping them with what they need, talking to them about their concerns, and being willing to share your own feelings with them. I found that that was really helpful for both of us. For me to say, "You know what, I'm really scared." And for some reason it has occurred to me that she really knew that and it was really okay for us to talk about those kind of things. So for somebody else who may be afraid to share their feelings with their parents, I would encourage you to do that. At times, encourage them to share with you. Respect them and understand that they have to live their life. Respect the choices that they make, whether it's treatment, or it's end-of-life issues, or whatever. Really, it's them. They get to deal with it and respecting that is really important. And know that you're not alone. There's a lot of people who are dealing with cancer as a family member or a friend, and finding support from them is a great way to help your own self deal with the stresses that you're feeling.

ANDREW:
And Gloria, what about from you? You've been through the whole cycle with losing your mom.

GLORIA:
Yes. Well, I wanted to make a comment about something that Carolyn said about listening to her mother's intense emotional reaction to different things. I don't know, Carolyn, if your mother is undergoing chemotherapy at the present. But I know, having just finished up my treatment five months ago, I was amazed from day to day how different I felt while undergoing chemotherapy. And not just physically, but emotionally. I had no idea how much the chemotherapy affected my mood-regulating hormones. To where my emotions were just completely out of proportion to even what was going on. And I loved that, Carolyn, that you nail yourself to the chair and let her get that out. That was the thing that I felt helped me the most, through my treatment, was to know that every Sunday night, my brother would call me and just listen to whatever I had to say. And it got to where I started getting excited by Thursday because I knew Sunday was just a few days away.

ANDREW:
So for an adult child then, listening to your parent. Just listening.

GLORIA:
Yes. And if the parent-child relationship is like mine was with my mother, where she wouldn't feel comfortable unloading all her emotions onto me...Perhaps encouraging someone that that parent would be comfortable with. Be it their spouse, a good friend, perhaps a friend who's afraid or backing away. But yet the parent would feel more comfortable opening up emotionally to them. Than the child could perhaps encourage them to just listen to the parent.

ANDREW:
Good point. And Fern, that's really what you were talking about with your sister. You have to think of different strategies that can be used, not just what you personally do directly with a parent. But leave us with some final thoughts that you had as you listened to this discussion. Things that this has triggered for you that might be helpful for others.

FERN:
Well, I think the key for my mom, or for anybody who's dealing with a parent going through these kinds of things, is to allow them to use their own coping mechanisms. Whatever they may be. And if they choose denial, if that's the river in Egypt that they want to be on, then the comment I'd make is that reality is many times overrated. You know, reality sucks. Why not stay in denial if it makes them happy? Those of us who believe very powerfully in the mind-body connection to recovery believe that there is some connection there. So if my mother denies that she had cancer and she feels like she doesn't have anything to worry about, I suppose it's not for me to rub her nose in the fact that she should be worrying about something. So maybe that's why she's doing so well.

ANDREW:
Those are all good points. Well, I want to thank each of you from around the country for participating. And for sharing your personal lives and personal relationships with your moms. I know it's very helpful for our listeners. With that comment, we will have to end this very rewarding discussion, so thank you again. And for the American Cancer Society's Cancer Survivors' Network, and from our HealthTalk Interactive Studio in Seattle, I'm Andrew Schorr.