Hello, my name is Kevin and I'm a non-Hodgkin's lymphoma survivor. I'd like to take a moment to introduce the caregivers that will be participating in our discussion, "How Can I Help?"

Our host is Andrew Schorr, a medical broadcaster from Seattle. Andrew was diagnosed two-and-a-half years ago with chronic lymphocytic leukemia. He so far has not had to have treatment. Mike is from Kansas and is caregiver to his wife Donna. Donna was diagnosed three years ago with breast cancer. Kate is from New Jersey and she's the life partner and caregiver to Michelle. Michelle was diagnosed with AML leukemia four years ago and has had both chemo and a bone marrow transplant. Dori in South Carolina is a breast cancer survivor. She found a unique way to help friends and family understand what she needs and is now using that same technique to help others. Arlene lives in Pennsylvania. She'd been caregiver to her finance, John, who passed away with lung cancer in 1991. Arlene is also a breast cancer survivor herself. Jackie from New York is caregiver to her husband Dennis. Dennis underwent surgery for prostate cancer about six years ago.

Carefully listen as they discuss some of the issues and various concerns of caregivers. You will hear how they handle the initial shock of the diagnosis, how they communicate with their loved one during this difficult time as well as other family members, friends and co-workers. They will also discuss how they sought out information and resources to answer their questions and assisted them as caregivers.

The discussion is unique in that it represents the views and opinions of real people living with cancer. This discussion does not necessarily represent expert opinion nor the opinions of the American Cancer Society. The information represents what has worked and not worked for others dealing with cancer. As people deal with their cancer in many unique ways, it is up to the listener determine what is appropriate and relevant for them. We hope the information is helpfuland we welcome your feedback.

Mike, Kansas

ANDREW:
Mike, I'm going to start with you if I could, and talk about you and Donna and maybe we could go over some these questions. But first I want to understand. You decided to quit your job?

MIKE:
Yes.

ANDREW:
How come?

MIKE:
My responsibilities were mostly in Europe. I was very far away from home. My wife was here at home, in Lawrence. And so it seemed appropriate to be here at that time to go through some of the things she had to go through, with her. And to be available to her when she needed me.

ANDREW:
Mike, you and Donna have been married since 1964, I understand. Three years ago Donna was diagnosed with breast cancer and underwent a bilateral mastectomy. Donna did not undergo radiation, but is now taking Tamoxifen. Mike, how did you keep yourself strong going through all the diagnosis and then surgery?

MIKE:
Well, I think first I made it a point, or we made it a point, because it was a joint thing. I went to every medical appointment with her. I went to the hospital whenever getting ready for surgery, of course.

And I went through every examination after the surgery was over. We were there together. All the way through the time she was off for her job for awhile, she has returned to work. But she stayed away from work for about three months, at the time. And that was the beginning of getting together and doing things. Beyond that we read a lot, both of us, about what could happen.

ANDREW:
How did you find your way in becoming a caregiver? Did Donna give you guidance, or did you get it from others?

MIKE:
Well, it's important I think to begin with that you have communications, and a lot goes along with understanding what these signals are your partner gives off. What you need to know or how you need to deal with them. My wife in particular wanted someone to listen for her, because she was so involved in the experience of, "Oh my gosh, I have cancer." She wanted someone to be with her when she was feeling down. And those are the kind of roles I provided.

Communication is an important thing, we've been married for a long time, we were very fortunate we had already established that communications link.

ANDREW:
How did the communication specifically start to say I need you to help me in this way or did you just jump in and say I'm going to do this I'm going to do that?

MIKE:
It was more the latter. We jumped in or I jumped in to do these sorts of things.

ANDREW:
Did the medical staff give you any instruction on how to be a caregiver?

MIKE:
No. Actually, that was something they did not do. They told me about conditions that would exist in terms of expect this to happen, expect that to happen.

ANDREW:
But those were clinical things?

MIKE:
Those are clinical things or even maybe expect some reactions to medications or something over a period of time. But not, "Your wife is going to need this, your wife is going to need that." That was not part of our experience.

ANDREW:
How did you get information and guidance on how you could be the best partner to your wife going through treatment for breast cancer?

MIKE:
Reading mostly. American Cancer Society. Did some brief talking with some people that had been involved with cancer in the family. But not to someone who had been a caregiver for a breast cancer patient. Mostly through just exploring and reading and learning and studying.

Mike, Kansas

ANDREW:
Mike, what advice would you give to somebody who very abruptly finds themselves in the role of the caregiver?

MIKE:
There are support groups in the community. We are well aware of those now. I would turn to them. You can turn to other caregivers. Since this has happened I have talked to several men whose wives have had breast cancer.

ANDREW:
How do you as a caregiver, if you don't know anybody, you know, in your family whose been in this role, how do you initiate a discussion, maybe it's somebody at work or somebody at church, somebody at the coffee shop?

MIKE:
The discussion basically is to drum up the courage to go up and ask. I think many of us get embarrassed by the idea that we're sick, or that somebody in our family is sick, or this particular disease people don't want to talk about. And I think what we really need to do is be able to ask someone if you know they have some, or at least heard, hey the so and so have had this experience some years ago. Why don't you go talk to Ralph, and go off and actually do it? That's very important to be able to sort of let your barriers down and go ahead and have sort of an open discussion.

ANDREW:
Mike, we'll come back to you in a minute.

Dori, South Carolina

ANDREW:
Let's go to Dori in South Carolina. Dori, you're forty, married and have a seven year old son. Besides, being a breast cancer survivor you're also a caregiver for a friend. Can you tell us about that?

DORI:
Well, from my own experience, of course, I know a lot of things that I wished would have been done, or you know, could be done for other people. In her case, this is a single mom with no insurance. So practical things I could think of, for instance networking people to, for child care, bringing meals to her that were freezable that were in small portions. So she just kind of take them out of the freezer and heat them up instead of having things like big casseroles and things, you know that you really couldn't eat for, you know, just two people.

What I had done for myself was put together sort of a form letter all the people that had called and sent me cards and things. I really wasn't up to getting back to them so I just wrote a form letter. Just kind of stating that I had been diagnosed with breast cancer that I had had a lumpectomy and my lymph nodes removed, stated that I opted for breast preservation, which involved chemotherapy and radiation. Thank them for all they were doing in terms of prayers, phone calls, cards, flowers, meals, childcare things like that. And really just kind of said as I recover and prepare for the rest of the recovery process, please forgive me if I don't return your calls and letters. If you want to participate in my continued recovery you can contact, I put a friend's name down and her phone number. And said you can leave your name and number and she'll contact you, if I need a ride, that way it kind of made it open for people if they wanted to do something. For me not to have to be directly in contact with them, but to have this friend could do it. It just made it a lot easier for everybody.

So, I created that for this friend as well. And, because she really didn't have insurance I had another person research Medicaid, another person research local charities, and we were able to come up with one place that paid her electric bill, another one that brought some food. We had another one take care of one of her mortgage payments. There are all sorts of things that are out there that if you have people that have background in knowing how to research these things. It can be a tremendous help.

ANDREW:
Are there certain things you would say to new caregivers, to answer the question, "How can I help?"

DORI:
Validate their feelings, as the man earlier spoke about with communication. I loved being able to talk to my husband. It was nice just to be able to express my fears at whatever depths they were at the time. And have him respond with, "I can understand how you would feel that way," or "I see," but not invalidating those feelings. That was wonderful and very important to me to be able to really express how I really felt at the time.

I think there's a great healing process in being able to express truthfully how you feel.

ANDREW:
Well said, Dori.

Kate, New Jersey

ANDREW:
I want to talk to Kate now, who is the caregiver to her partner, Michelle. Michelle is in remission now from AML leukemia. Michelle was treated first with chemotherapy, and then had to undergo a bone marrow transplant. Kate, did the medical staff properly prepare you for your role as a caregiver?

KATE:
They did not properly prepare me for the role as caregiver other than the medical side of it. Cleaning her ports, maintaining a clean apartment, germ free etc., monitoring the medications. So as the role of caregiver, I guess emotionally, no there wasn't any preparation for that.

ANDREW:
How did you get trained as a caregiver?

KATE:
Baptism by fire. Its just when she came home just bouncing off what she needs basically. You know seeing if she needs help to the bathroom, you're there for her to lean on, that kind of thing. It was almost like autopilot. You just sort of just snapped into what the person you're with needed.

ANDREW:
Kate, I know there were really tough times, times when Michelle felt terrible. Kate, what would you do specifically to help her through those rotten times?

KATE:
If she felt awful you would say, "Yeah I'm sure you do," and a lot of times with one of the chemo rounds she was throwing up constantly and I was sitting there holding the bucket, rubbing her back that kind of thing. You not leaving her alone, letting her know, "No don't worry, it's OK, this kind of thing is expected, go ahead and puke your guts out because you have to." You know she says, "I hate it," you're just right there with her saying, "Of course you do and of course I do to. And I hope it stops." You know, just supporting her and getting through it.

ANDREW:
Through all this how did, what did Michelle expect of you? And what did you expect of her?

KATE:
The second question easier. I expected her to get better and that was it. I could expect anything to be given back to me which wasn't easy, but I absolutely didn't expect anything from her. She expected from me, I think, a routine, regularity, being there, knowing that I would walk through that door, click, click down the hall, she would wait for my heels around 6:00-6:15. And you know that I was to be there not demanding but it was a real sigh of relief when I would show up. Its like, okay, now a can spill, let her know what happened, today tell her how much pain I'm in, and then the night's going to be better kind of thing. So, I think it was more a routine and an expected reassurance. And even as down to, for instance, I would go to a certain ice cream store and get a milk shake for her, at the one hospital that she could have ice cream. And, another friend offered to go get it and she said, "No. No. That's what Kate brings." Its fine, you know, I'll wait. Kate will show up with it at 6:00."

Or, if she was bleeding I knew which exact pads to get for her and she would expect me to show up with them. A certain kind of food if she could have. These are things she expected of me. It wasn't demanding. It was more of a reassuring, a comfort level.

Kate, New Jersey

ANDREW:
You're an attorney, and about a month before Michelle was diagnosed, you took a job with the state legislature. A very demanding job, I understand. How did you handle a demanding new job when the person you love is so sick?

KATE:
That was really hard. I tried to let my immediate supervisor know what I was going through. He wasn't the most caring person, compassionate person in the world. So at one point when I had been at the hospital all night. At nine o'clock in the morning and I called him to say, "I'm not at work. I'm still at the hospital." He was so cold to me that I sought out someone else. I went above his head to his boss and I said if I ever have to call out, or I'm in a situation like this, may I come to you and not deal with him. Because I just can't deal with the added stress and coldness from someone. Which was fine, and the supervisor said that's just fine with him. But it did make it harder to concentrate during the day. As soon as I would get out of let's say one session I would run to the phone and call Michelle and say, "Are you OK? What's going on? How's your day?" So, it was hard it was juggling and trying to stay focused.

ANDREW:
What would you say to another caregiver, with somebody sick with cancer maybe as sick as Michelle, your partner, has been, requiring chemotherapy and then a bone marrow transplant, so that they can really just be a great caregiver.

KATE:
I would say make sure you are there to support the person, in what they need and what they ask for.

To be really dedicated, you know, if you say you are going there on a certain night, be there. But make sure, and I can look back in hindsight, that you take time for yourself even if its going to be an advanced scheduled night off or something, to say I'll be up every night, but Saturday night I won't. But I'll be back Sunday. Something like that, I mean to make sure that they are there for the person but take time of themselves. To keep themselves strong and, to keep themselves strong for that other person. If the caregiver falls apart they won't be able to care-give obviously.

ANDREW:
You've made a lot of really good points, Kate.

Arlene, Pennsylvania

ANDREW:
Let's go now to Arlene. Arlene has had breast cancer herself, but she was the caregiver to her fiance, John, who died of lung cancer about eighteen months after he was diagnosed. Arlene, how did you provide real quality support to John?

ARLENE:
My problem was that John was in denial from day one, and I did not get much help as far as how to handle the emotional part. Mostly the physical and the testing I was aware of, the doctors made me very aware of what the outcome was going to be. They informed me he had six months to live, which actually he lived a year and a half. I indeed read a lot about the cancer, of course. I was dealing with his emotions too. But no, I did not get as much from the medical field as I would have hoped to. I think that has changed in the years, from my own disease I know my family has gotten more help from the doctors. Because I knew what to ask this time.

ANDREW:
I can understand that. And so Arlene what role did you play the with a fiance, a loved one who just didn't want to hear about it? What role did you play?

ARLENE:
I played the role of, "John, we have to talk about this," and I kind of put him on the spot by saying you know, "We need to make arrangements, your brother is out of state, your parents are out of state. What do you want me to do?" And he'd say, "Do whatever you want to do." You know it was that kind of an attitude. When indeed I did contact the family and expressed a concern that the doctors had expressed to me, and with in a month or two later his brother did come up to the home. And he was there the last six months, seven months with John.

ANDREW:
Now, Arlene you shared with us that you have dealt with cancer now a second time yourself as a breast cancer survivor.

ARLENE:
Correct.

ANDREW:
So in that role and in looking back on the role you played with John, your fiance, who died of lung cancer, what would you say to a new caregiver who would be listening to us? About what guidance, what you've learned going down this road that you would really urge them to think about or do?

ARLENE:
My whole thought is, dealing with John, I learned an awful lot, but was more informed as to what I wanted my caregivers to do for me. My first thought was is just try to be there. I might not be myself. I might be cranky, I might be, you know, certain times I was miserable and felt sorry for myself, and kind of bear with me during these periods of time. Although my children were very fortunate because there were support groups. They went to those support groups with me and did learn a lot. But my main concern was that my children could bear what I was going through. And I made it very clear to them of all my desires and they did not want to listen to it at first. But I said, "Please, I have to be at peace with myself and make you aware of what my feelings are." And I accomplished that very early on.

ANDREW:
Do you mean end of life decisions?

ARLENE:
Yes.

ANDREW:
If you had to confront that?

ARLENE:
Yes. I did, I did. I did do that because I did not want them to be left with the responsibilities that John's brother and I had been left with at the end.

Arlene, Pennsylvania
Dori, South Carolina

ANDREW:
Arlene, would advice to caregivers be, then, from you or me as cancer patients, to listen to us and sort of take their cues from us a little bit?

ARLENE:
Exactly. Don't be afraid, let the patient talk, let them express themselves. You might not want to hear it because that might not be the thing you want to hear, is a final discussion on certain things. But yes listen, listen very carefully, and we give those signals.

What we need and one of your other talkers spoke about, and I think just being there but also knowing that, you know, I constantly told my children go take a night off. Go where you need to go. Because I thought that's exactly what they needed to do get away from it for awhile. And thank God I was able to do that. Because I didn't feel I was being abandoned or anything at that point. But indeed just listen to a person and they certainly will express themselves hopefully. Or when they don't, you can prompt them a little bit, "What do you feel about this? Or what do you think we should do about that?" You might have to do that in order for them to speak up and give you their honest feelings.

ANDREW:
How would you react if your caregiver did something you didn't want them to do if they judged that they were thinking more clearly and they believed in their heart it was really right for you. Like, you weren't taking a certain kind of medication or you weren't, or there was some behavior or something that would help you get well that you just were not doing, but they really took some action to make sure you did it because they really believed that it was best for you.

ARLENE:
Right. Well my children did that. I had a problem and I said oh its just part of the treatment I'll be fine, you know, don't bother the doctor. Well indeed my daughter did call the doctor and I did need to be in the hospital immediately because of the condition. So I learned a great lesson from that. But they did take the initiative and said mother we are doing this, because there is something wrong. So I thank God they did do that.

ANDREW:
Dori, a comment from you?

DORI:
Yes, I was taking an oral form of chemotherapy called cytoxin as well as getting infusions. And I was supposed to drink a lot of water and I wasn't and my husband was constantly sticking glasses of water in front of me. And because I wasn't drinking enough I ended up with an infection. Which was really frustrating to go through the same thing. I should have been listening, but it is a little frustrating when you have someone constantly telling you to do something that you just don't feel like you want to do. But it was a good lesson for me too.

Jackie, New York

ANDREW:
Jackie, a few things from you. We know your husband, a few years ago, Dennis, was diagnosed with prostate cancer. You, as a caregiver, you've heard a lot of discussion here. What role did you find yourself in there when Dennis, a pretty strong and active man, found himself with a very serious disease?

JACKIE:
Well first of all, when he was diagnosed, after the initial shock, I felt, "I just can't handle this." That was my first impression that I can't do this, I can't handle this. But after the shock wore off, it's six years since he had his operation, I found out I can do it, and I can handle it.

But I think everybody goes through different stages and that's how it affected me, that I felt that I can't do this, I can't handle this, this can't happen to me. It should have been somebody else.

ANDREW:
Where do you get the strength Jackie?

JACKIE:
Day by day, as far as I was concerned day by day. Even though my husband had a very positive attitude, and the problem was we knew nothing about prostate cancer. And anybody we knew that had cancer died and that's what we thought was going to happen. And we thought it was going to happen in a very short time. But that was ignorance on our part, because we didn't know anything about the disease. But after we found out of course we breathed a little easier. As I said I just take it day for day and that's how I did it right from the beginning.

ANDREW:
Now who initiated seeking out information to put this illness in perspective? Did Dennis do it, or did you do it together?

JACKIE:
I think we did it together. And we had to talk to somebody immediately and we didn't know what to do. The only one I knew is that someone down the street, an older man had colon cancer. As I said, we were really ignorant but said it's a cancer. And we called him up and I said will you please talk to us. And they said, "Oh sure." He and his wife said to come right down. And they sat down and they talked to us and we found out all right, they're dealing with it and he's still alive and it didn't matter what kind of cancer. We just had to speak to somebody. And that's when we started finding out, reading and making phone calls and learning about the disease.

ANDREW:
OK, when you look at your sort of odyssey and Dennis I should mention has written a book for prostate cancer survivors, and Jackie and Dennis both led support group, so they've really come out and become very public people. But Jackie when you look back on this adventure you've been on as a caregiver and especially when he went through surgery some years ago, how did you, you said day by day you got strength. What were some key things looking back on it that you think you did that really helped Dennis?

JACKIE:
I think first of all I had to, we've always had good communication and the first thing I did was absolutely reassure him even though I had doubts I said it anyway. That I would be there for him and be able to handle it and I would do any thing and everything I could for him. And I said it more than one time and I think then I started believing it. But I had no idea which way the disease would go, and if in fact it woul take a turn for the worst. And I just knew I had to reassure him that no matter what, I would be there. That I wouldn't desert him and that I would try to make his life as comfortable as possible. And so that helped me a lot and I think it helped him to.

Jackie, New York
Kate, Pennsylvania
Dori, South Carolina
Mike, Kansas

ANDREW:
Let's touch about fear for a second. We talked about the things people can do to help. But how do you deal with the fear saying or doing something that may blow it? So Jackie do you want to start with that?

JACKIE:
Yes. I had it from day one. And how I handled it is I kept my mouth shut. And that's just what I did. I couldn't actually tell my husband my fears for a good six months until finally I felt he was strong enough, and he was on his way to recuperation and then actually I broke down and told him how frightened I was. But I think it was good in my circumstances it worked out well.

ANDREW:
So you censored what you said to him along the way?

JACKIE:
I did. I did. I kept everything very positive.

ANDREW:
Kate now you've been caregiver to Michelle again. What about not saying the wrong thing. Did you have a fear of that, doing the wrong thing?

KATE:
I definitely had a fear of that. I think I also, I definitely didn't express any kind of thoughts of that she wouldn't make it. In fact I don't even know if I let that thought enter my head. But sometime I might on a smaller scale stick my foot in my mouth, even a little comment like, "Oh you look awful today." If that came out at one point I would just run out in the hallway and cry. And think how can I ever reverse what I just said. But other than that, with the big picture, the fear of not making it or something really going wrong, I definitely also kept my mouth shut. I wouldn't express it to her.

ANDREW:
Now that Michelle is doing better. Have you ever talked back retrospectively on those times when she was in the hospital, about do you remember when I said that, oh I felt so terrible.

KATE:
Yeah, yeah it came up after the fact, sure.

ANDREW:
Did she forgive you?

KATE:
Yes, she did she definitely did. I think because everything came out so positive. On the other hand when she was on the morphine and other drugs she would say some pretty horrible things. And I think she feels worse about that than I could feel about that.

ANDREW:
So it works both ways?

KATE:
Yeah, yeah.

ANDREW:
Mike how about with your wife? Some things that you were that you were afraid to say or worried, "Oh my God, I might slip or might do the wrong thing, or say the wrong thing, and really just send her into a tailspin?"

MIKE:
Not so much that I was worried about what I would say would affect her in that manner you know, say the wrong thing. But there certainly were things I was afraid to talk about at the time. There were reactions I had, I specifically remember my situation were they brought her from the recovery room to her hospital room right after the surgery. And while I didn't actually see her while they were doing the transfer, the hospital's policy didn't allow that I could hear her. I could hear her coming back from the surgery sort of moaning, and that just tore me apart but we didn't talk about that until probably six months later, when we were talking about what our reactions were to certain things with each other.

ANDREW:
And Dori any times when you husband or friends slipped up?

DORI:
Yeah, when I was first going through my surgeries, a girl stopped by and just made a lot of comments about someone else that had been through the same treatments, and what happened to her, and it was real discouraging I really didn't appreciate that at all. But for the part with my husband it wasn't things he said, it was the look in his eyes that I knew was, had him really worried. I just, I developed a great sense of humor so I'd say what I thought he was thinking. Like, "Boy I look like I'm about ninety-five today don't I?" You know that kind of thing, or a comment about my hair, you know, because I know I looked so different, going through the treatment and try to make a joke out of it to ease his mind.

All

ANDREW:
Mike, anything that you would want to say to people listening?

MIKE:
I still have to harp back to communicate, communicate, communicate with the person you're being the caregiver for.

ANDREW:
Arlene, anything that you wanted to bring up?

ARLENE:
Just be there and be aware but take care of yourself first. You have to be healthy in mind and physically to be a good caregiver. I think that is the most important thing, because you don't want to give them something to worry about. They already have enough worries without worrying about their caregivers. And I can't stress that enough, that don't feel guilty when the time comes and you need space. You deserve it and you need it.

ANDREW:
Arlene thanks. Kate final comment from you?

KATE:
I would just agree with the other callers make sure you take care of yourself so that you're strong enough to take care of the person you're taking care of. And definitely keep a positive mind, a positive attitude, and a face towards the person you are taken care of, and don't forget about yourself in the whole process.

ANDREW:
Dori, final comment from you?

DORI:
Try to bring humor into the situation. I think that's real important. That's really, it really helped me. Whether that be a funny movie on a regular basis or you know just humor. I watched Seinfeld every night. I don't know how may people appreciate that show but that kind of just silly humor just kept me laughing. Got me outside of what I was going through, and kind of put things in perspective when you get outside of your self.

ANDREW:
Jackie you get the last say, I believe. Any final coments?

JACKIE:
You have to have some humor, as the other people said. You have to think about the other things, your children, your family, and just take it day for day.