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With Eyes Open

Episode Three: Caregiving

Air Date: September 12, 2000

Introduction to With Eyes Open

BILL MOYERS, HOST, ON OUR OWN TERMS: As you have just seen, the story of one person’s dying is also the story of a family providing care and support. These family caregivers are often swept up in a fury of tasks, while they simultaneously cope with their own feelings of fear and anxiety. But out of this hard work can come the richest of memories. In the next half-hour, Ray Suarez talks with family caregivers who share their experiences with us: experiences both practical and profound.

Panel Discussion

RAY SUAREZ, HOST: Good evening. I'm Ray Suarez. Everyday some 25 million Americans provide care for someone they love who's sick or frail. This care may range from taking your aging mother to the doctor to helping your dying spouse get dressed, bathe, even eat. Tonight we've filled this room with experts, people who have personal experience with caring for a sick or dying loved one. We'll talk about what their lives are like. First I'd like to introduce our special guests. Beth Witrogen McLeod is the author of the Pulitzer Prize nominated book, Caregiving: the Spiritual Journal of Love, Loss and Renewal. Celi Adams is the founder of Homecare Companions, a San Francisco agency, which provides free training for families and friends struggling to provide home care. Beth, let's start with you. Your own experience with the death of your parents made you into an advocate for this issue.

BETH WITROGEN MCLEOD, AUTHOR AND CAREGIVING ADVOCATE: It definitely did. I didn't want other people to suffer the way I had. I didn't even know the term caregiver until six months after my parents had died, broke and in a nursing home, and very far away from the kinds of lives we had envisioned. I never knew about community resources. I didn’t have support networks, so I was always falling down a precipice.

RAY SUAREZ: In your case their health declined at the same time so you were faced with the caregiving and the loss of both.

BETH WITROGEN MCLEOD: Right. It was hell. It was absolute chaos. I never believed that my parents could die so to have them both ill with, my mother with Lou Gehrig's and dementia, my father with cancer. It was a complete shock and it really did broadside me out of my life entirely.

RAY SUAREZ: Celi Adams, I guess when people first come to you, they're often still first getting used to the idea. They've just received a diagnosis, they're getting used to this role of caregiver. Describe to us the people who are coming through the door and what they need from you.

CELI ADAMS, R.N., TRAINS FAMILY CAREGIVERS: The people who come through the door to take my program are people who realize that they're really getting in over their head. They absolutely do not know where to start. So my motivation to do what I do is to give people a leg up, have them not have to reinvent the wheel with every experience and share what I knew, it's what I could give back as a nurse.

RAY SUAREZ: What are the first things that people have to do after they're enlisted in this role or have just gotten a diagnosis of a chronic disease?

CELI ADAMS: The initial steps is learning everything you can about the illness. That's the first place because you're being hit with something that you absolutely don't know anything about. That was what my initial reaction was because the first person I took care of at home was someone with AIDS. And I knew nothing about AIDS and I was terrified. So my first need was to do research.

RAY SUAREZ: Let's take a look now into the life of a family caregiver. For the last four years this devoted daughter has cared for her mother who has Alzheimer's disease.

Mary Ann Thyken, Caregiver for her mother Peggy

MARY ANN THYKEN [to her mother]: You ready to get up?

RAY SUAREZ: Mary Ann Thyken has just gotten home from work. Her second shift is just beginning. She cares for her mother, Peggy, who no longer recognizes her.

MARY ANN THYKEN: Having to take the parental role with your parent, it can make you sad. It’s a hard place to be sometimes. When she first moved in with me, I was working. I stopped working for a period of time and that was difficult to give up, but at the same time, I honestly thought that this was more important.

RAY SUAREZ: Now Peggy’s care is a two-person job. Mary Ann employs paid caregivers twelve hours a day.

MARY ANN THYKEN [to her mother]: You made it. Another successful landing.

I am cheerful when I’m dealing with her. I like her. I cannot imagine spending my time with her and being depressed about it.

RAY SUAREZ: Caring for her mother is a choice Mary Ann is comfortable with. Still, the work is often tedious.

MARY ANN THYKEN: We grind her food to make it easier for her to eat, to swallow them. It’s difficult for her to chew; it’s hard for her to remember to chew.

You get tired. Sometimes you get tired and angry and sometimes you just want to be able to walk out the door and really not worry about it. Initially, I was worn out all the time. And now because I have better help, we have a good routine, there is less that’s unexpected.

My mom and I were very close, so I miss a lot of the conversation. We had always been able to talk about everything. And, I miss that.

RAY SUAREZ: At nighttime, it takes two people a full hour to get Peggy ready for bed.

MARY ANN THYKEN [to her mother]: Is that OK, sweetie?

You try to get some sleep and I’ll be checking on you, OK? I love you.

PEGGY: I love you, too.

MARY ANN THYKEN [to her mother]: Good night.

Ray Suarez Joins the Audience

RAY SUAREZ: And Maryann Thyken joins us now. We saw you taking care of your mother. You made the decision to do this. But did you make that decision before you really knew what you were getting into?

MARY ANN THYKEN: No. I honestly didn't know what I was getting into. As we started through the process, I realized that I had to learn how to be part doctor, doing the levels of assessment, being a mechanical engineer in my spare time, a good buyer of all the different products we needed to have in the house. I think the enormity, if I'd known at the beginning, I would have thought it was absolutely impossible.

RAY SUAREZ: So maybe it was better you didn't.

MARY ANN THYKEN: Absolutely.

RAY SUAREZ: Let's go back to the panel because this is something that's approaching a public health crisis given the fact that the single fastest growing portion of the population is people over eighty. This is the population that's most likely to be afflicted with Alzheimer's. There's going to be a lot of Mary Anns in ten years, right?

CELI ADAMS: It's an overwhelming issue. The public health system is certainly not set up to deal with it. The overall medical system is not set up to deal with it. The fact of the matter remains that we're going back to the tradition we've always had of taking care of our own. We will all be Mary Ann, or as we age we will need a Mary Ann.

RAY SUAREZ: Barbara Joan, let's talk. Tell us your story.

BARBARA JOAN, CAREGIVER FOR HUSBAND: My husband was sick for twenty-five years. I met him fourteen years ago and he died a month ago of cancer. He had Hodgkin's lymphoma when he was a young man and fought for his life, his whole life.

RAY SUAREZ: Let's talk about your own hard work in making that long walk with your husband.

BARBARA JOAN: Larry had been irradiated through his whole abdomen and twice in his pelvis and eventually developed lymphedema. Larry had it in his legs. His legs needed then to be wrapped daily and this was my job. It's a really good way to start a big fight everyday. It's too tight, you get it wrapped all the way up and then he tells me it’s too tight. Wrap it tighter. So that’s an example. Another thing is Depends. We don’t talk about bowel movements in our country, in our culture: there are a lot of taboos around it.

RAY SUAREZ: I have a feeling we’re about to break through that right now.

BARBARA JOAN: Here we go! When Larry first was having difficulty with bowel continence, no one really was dealing with it and eventually he went and bought some Depends. And ultimately needed help changing them and that’s hard work. It’s hard work on a lot of levels. It’s hard work physically to clean someone and change them. It’s hard work to deal with someone who’s wearing diapers and is your partner.

RAY SUAREZ: I'm hearing all these different little pieces of your job coming out. Companion, caregiver, friend. When it was all of those jobs coming, rushing through the door at you, did you sometimes feel, god, did I really sign up for this?

BARBARA JOAN: Did I sometimes feel like a raging bitch?

RAY SUAREZ: I'm glad you said it and not me.

BARBARA JOAN: It wasn't only a feeling, it was a reality. I got a lot of therapy. I studied whatever I needed to or could. I talked openly with Larry and with my son, and with my friends more and more about what was happening and what was difficult.

RAY SUAREZ: We saw Mary Ann with her mother and heard her talk about how it's different now that her mother is childlike. In dealing with your husband, did you have to negotiate little surrenders of autonomy with an adult who still wanted to hold on to that self in a kind of ferocious way that often sick people get?

BARBARA JOAN: Absolutely. Who in any relationship with a parent, a child, with a spouse, with a lover, doesn't have to negotiate? We all do. It's harder when you're constantly faced with the fact that as deeply as you love this person, you will not be able to see them again when they leave. And yet, the work is letting go. Letting go of before and letting go of after and living now. Being in the present.

RAY SUAREZ: Let me turn back to Beth and Celi at this point because it's important for us all to keep in mind that these diseases don't stand still. That once you get used to a certain plateau, you can't get comfortable there. This seems to be a tremendous challenge to caregivers.

BETH WITROGEN MCLEOD: Right. So I feel that it’s very important that people understand that it’s all right to feel guilty and angry and upset and confused and frustrated. These are parts of the process of learning to be better people.

RAY SUAREZ: So Celi, where can we go to get help?

CELI ADAMS: There are a variety of places to go and get that help. I think if a person is in the hospital you take advantage of that time and if the nurses or the attendants come in and say you need to leave the room now we're going to give so-and-so a bath you say, nope. I'm going to stay here; you're going to teach me what to do because when I go home I have to do this. When physical therapy comes in to move them, no, I'm not leaving the room. You have to become this very vocal, outspoken advocate to get the things that you want.

RAY SUAREZ: Let me move on to Larry Faulks. Tell us, did you follow any of this good advice or did you learn the hard way?

LARRY FAULKS, CAREGIVER FOR MOTHER: I stumbled into it. I think the best thing I found was a support group. The thing for me that I've always felt about caregivers, it's like you're drafted in this situation. You don't volunteer, you don't interview for it; you're just drafted. Yes, I, like other caregivers have found that there are draft dodgers that I'm related to. I don't have a whole lot of choice in that. This has gone on with me for four years and I know with lots of other people it's gone on for longer. It goes on and on and on and on and on. There's no wrap up. There's no anything. One of the things somebody said to me and I keep thinking about it a lot was that it's like taking care of a child except you can't look forward to the future. And it's a lot of work and there's a whole lot of love that goes back and forth and some great communication, but you can't look forward to the future.

RAY SUAREZ: Larry Faulks, thank you. We've talked a little bit about the hard work. Caregiving can also take an emotional toll. Studies show 46% of caregivers are clinically depressed, 43% feel isolated and say they lack understanding from others. These are stunning statistics. How comes it gets to this point before people even think to ask for help?

BETH WITROGEN MCLEOD: So often we take it on thinking it's for the short term and it becomes long term, but we also don't understand the depth of emotion this is going to bring out. We just become so overwhelmed because we don’t take a step back and we don’t have any support in society to validate what we’re doing so we feel pathological.

CELI ADAMS: I also want to share an anecdote. I was working with someone from the National Brain Tumor Foundation to set up a class in San Jose not long ago. And we got there late. We had boxes everywhere. We were not prepared. The people started arriving for the class. The first guy walks in and he says, you guys need any help? My first answer was oh, no, fine, we're fine. And then I stood there and I said, oh my god, I just violated the first rule of when somebody says do you need any help. I turned around and I looked at him and said, the answer to your question is yes. Go ask her because she has the most boxes. That's one of the first things in the learning curve in caregiving, is the answer to the question is yes.

RAY SUAREZ: Did you finally ever learn to give in and say, yes, I’m in trouble?

JANE PETERSEN, CAREGIVER FOR MOTHER: I did. I definitely did. My mother was very well-loved by her church group and the community. But yes, help is, it’s absolutely essential. There’s no way that you can do it alone.

RAY SUAREZ: It sounds like from a lot of the stories that it's hard to ever put it down. You know you need to take a breather to make it for the long haul. But when you're in the middle of it there's no point at which you can say if I just had 24 hours off, if I just had a weekend off, I could make it the next month. But without that day off, I'm getting ragged.

JANE PETERSEN: I think my situation’s a little bit different from others who shared their experiences. My mother was actually diagnosed with stage IV colon cancer in April of 1998, and she died four months later in August. And so it was a very brief, very intense emotional ride. I don't think I ever questioned jumping into the caregiver role. That was just automatic. Of course, I would drop everything. I never thought about myself and that's some advice that I would give to caregivers is take some time for yourself. Get the support that you need. I think for me it was really difficult because the one person that I usually turned to in times of distress needed me to be really strong, so I no longer had my mother to be my pillar and I had to be hers. Even though obviously my family who is wonderful and supportive and loving but we're all going through it together. So it was very hard for each of us to take solace in each other. We probably needed people from the outside.

RAY SUAREZ: You need me, hey, wait a minute I was just about to tell you I need you.


CELI ADAMS: Ray, I’d like to make a comment to one of your questions when you said about taking that day off. A common theme among caregivers is this idea that you can never leave the house. You need to be there the 24/7. You don't give yourself the freedom to leave and there's actually a very practical reason that a family caregiver does need to get out of there once in a while. On a very pragmatic level when you live with someone with a progressive disability, 24/7, you adapt to their subtle changes on a daily basis to the point where you can really miss something that's becoming different with them. So it is actually very beneficial to walk out the door, go away, get out among people who don't have disabilities, to get your perspective back.

RAY SUAREZ: Let's talk a little bit about the importance of family help. Do you have a team?

PAT FORD, CAREGIVER FOR MOTHER AND MOTHER-IN-LAW: Myself. I don't have a team. I'm a sole primary caregiver of my mother-in-law and my mother. That's one of my biggest problems right now. My biggest problem is family members don’t support me.

RAY SUAREZ: Have you tried to explain what you're up against to the members of your family who could be stepping up and helping?

PAT FORD: Oh, yes. I've read articles to them, I've brought in information. I think that it's a form of denial on their part and not understanding because they feel that I have it under control so why do they need to do anything?

RAY SUAREZ: So what should Pat do? Beth, Celi?

BETH WITROGEN MCLEOD: It's unfortunately a very common problem that you don't always get support from your siblings and at some point you have to let that go. And there are very few families who rally 100%. It really is not you and it's not your fault and you didn't so something wrong. It's the way families are.

CELI ADAMS: Some people are really not good caregivers. They won't do it. It's not in them to do it. And I know any number of people who really look to the larger community, the social service community to try and fill in the gaps.

RAY SUAREZ: That's an important point. In the midst of all the hard work and emotional strain, many caregivers say they reap rewards they hadn't imagined possible. 70% of caregivers say they found an inner strength they didn't know they had, and 36% say their relationship with the person they were caring for grew much closer. Let's talk a little bit about the emotional rewards. With all the emphasis on the difficulties and all the emphasis on the strains, is it sometimes hard to miss the experience you're having?

SUSAN LIPSCOMB, CAREGIVER FOR SON: Let's see. I guess I was lucky. We were supported by the community. I of course had given up my job. I cared for my son who was seventeen, when he was diagnosed with cancer that he battled for two and a half years before he died. We were all united in our care for my son. It's so intense that actually after my son died, I didn't know what to do. You're so devoted. You have this mission that is the most important thing in your life and afterwards is when, now what? Nothing has ever been this important and the young man who had helped us with J.W., he came back and he said, I just miss being here. I miss you. I miss being surrounded by all these people because it was such a wonderful closeness. The rewards are immeasurable.


BETH WITROGEN MCLEOD: It's amazing that when you're in the thick of it you don't think there could be any good that could come out of it at all because your loved one's going to die and then where will everyone be? You start to live, rather than by the dictates of society, you live from the mandates of your heart. And you start to cherish and nurture goodness and you understand that every single act of kindness counts. And that’s the most important lesson I think that we can ever learn. To become authentic people who understand that there are great rewards in darkness.

RAY SUAREZ: Let's talk. Out of the corner of my eye, Jay Linderman, I keep seeing you nodding your head and I think this man has a story.

JAY LINDERMAN: In the early nineties, I received a serious call for help from my 82 year-old parents in western New York. And I hadn't a clue what to do. But as Beth was just saying, it has to do with love in the heart. I must say it's served me well. I never could have done it with my brain, even though that helped but I had to plug the heart piece in as well to be able to deal with two very headstrong, wonderful people with whom I had suffering childhood relationships that weren't suddenly fixed when we were old.

RAY SUAREZ: So there was work that needed to be done that was left hanging there.

JAY LINDERMAN: Parent child work that needed to be dealt with particularly with my father. But by paying attention to this there was an enormous reconciliation process that he and I went through. He died last year but before he went, we healed our hearts. And met each other. It was an incredible gift.

RAY SUAREZ: But you had to close that distance, not only emotionally but geographically. It's tough having a parent 2000 miles away going through this.

JAY LINDERMAN: 2500 miles. I started going back three, four times a year and toward the end, my mother's still alive. I go back there every six weeks. I've put together a caregiver network. She still lives semi-independently in her own home. And it works, day by day by day.

RAY SUAREZ: That's a story that I'm sure many people can relate to because so many of us live far distances away from our parents and our own children and the other people that we have to care for in this world. Let's get some final comments. Celi?

CELI ADAMS: We do come forward at this time with everything in us because of how much we care, but I don't think it's entirely intuitive. And I don't think that this needs to be done flying by the seat of your pants. And I think as a health care professional, it is my mandate to come forward and say I will teach you what I know so that this is not any harder than it has to be.

RAY SUAREZ: Beth, final comment?

BETH WITROGEN MCLEOD: It is a spiritual practice. Caregiving is a path with heart and the main thing is to not be afraid. It does take practice, we don't have to have all the answers at once. It's a path with heart because we're dealing with the most intimate issues of life and death. We can do this together but it takes being together and not being isolated and understanding that we all have the capacity to care, and to care greatly and to give.

RAY SUAREZ: Celi Adams and Beth Witrogen McLeod, thanks for your help. Thanks audience for sharing your stories, your good advice, and your hard won experience and thank you all for watching. I'm Ray Suarez. Good night.

For a referral to caregiver resources right in your own community, call the federal government’s Eldercare Locator at 1-800-677-1116.

Major funding is provided by The James Irvine Foundation with additional support from the Wallace Alexander Gerbode Foundation.

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