By Cynthia Pearson
WebMD Live Events Transcript
Event Date: 06/05/2000.
Developmental psychologist Peggy Stubbs and writer Cynthia Pearson will explore the sometimes difficult but important process of caregiving for loved ones when they pass away.
The opinions expressed by Dr. Stubbs and Ms. Pearson are theirs and theirs alone. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Welcome to WebMD Live's Mind Matters Auditorium. Today we are discussing Parting Company: Understanding the Loss of a Loved One, with co-authors Margaret L. Stubbs, PhD, and Cynthia Pearson.
Cynthia Pearson, founder and facilitator of The Dream Workshop in Pittsburgh, produces and writes the content for two web sites, Dream Journalist ( www.dreamjournalist.com) and Parting Company ( www.partingcompany.com). She co-authored The Practical Psychic, now in six languages, and has worked as a freelance writer and editor in fields of health care, family systems, personal development and spirituality. Ms. Pearson has taught death and dying and dream awareness courses, and speaks on caring for the dying to religious, community, academic and medical organizations.
Margaret L. "Peggy" Stubbs, PhD, researches the menstrual cycle, girls' and boys' pubertal development, and female development across the lifespan. She's taught in classrooms at many levels, from preschool to post-secondary, and served as the first director of the Department of Women's Studies at the University of Maine at Farmington. Dr. Stubbs contributed to the classic 1992 Association of American University Women's study, "How Schools Shortchange Girls" and has authored numerous publications, including Bodytalk, a series of pamphlets about menstruation for early adolescents and their parents, and Psychological Research in the Classroom: Issues for Educators and Researchers. Dr. Stubbs, who co-founded the Children's School in Acton, Massachusetts, has consulted with individual schools and state departments of education in the areas of gender equity in education, sexuality, teacher development and curriculum development. She currently serves as a board member and editor of the newsletter of the Society for Menstrual Cycle Research.
Moderator: Dr. Stubbs, Ms. Pearson, welcome to WebMD Live. How did you come to write this book together?
Pearson: Well, Peggy and I have been friends since the fifth grade and it happened at few years ago that both of us were taking care of family members that were dying. While we were undergoing this really sad time, we were able to compare notes about the difficulties about death and dying, about what it was really like to give first-hand caregiving. We were overwhelmed about the sense of being unprepared and ignorant about the death process. We decided we would write the book we wish we could have read, something that would help us not feel so strange when we were comparing our own experiences to what we were reading about. We wanted a book that spoke to the experience of the caregiver, and give that person a chance to have their own perspective on the topic, come to the light in the literature, since we hadn't found that at all.
Moderator: In the book, you say that "death is coming home again." What do you mean by that?
Dr. Stubbs: One of the things we noticed that has been documented pretty well is that most deaths are happening in the hospital or nursing home, but this wasn't always the case. In the 19th century, death was more a feature of everyday life, with people tending to the dying at home. Dead people were laid out in the parlor, and it was more a part of the everyday life. Gradually, we saw people moving into the hospital for care, and they began to die there also. In the 20th century, we found more and more hospital deaths occurring. Several generations now in current times have had to undergo this experience without knowing first-hand what care for the dying entails. Even though death is inevitable, it too is being postponed and prolonged, so we have more and more people needing this kind of care, and not being able to be in the institution for as long as they may need to be there.
Pearson: The reigning view in society has become that we are going to be unable to provide institutional care for all the people that are going to need care at the end of life, specifically the care for the dying. In the early 1980's, Medicare began to permit a hospice benefit in this country. Hospice means care in the home, that is, an outpatient program where family members and friends take care of the dying with the support of professional services. So when this began to be a benefit that people could use for the first time in over fifty years, it became not normal yet but commonplace for people to die at home. What that does is leave a lot of family members who had not grown up taking care of the dying in our homes. We were really unprepared. Most people born since 1940 don't have a literacy of death and dying. Nowadays these kinds of demands are including managing technical equipment that is meant to help but becomes another element of burden. So those kinds of work burdens added to the fact that we are not taking care of strangers, we are taking care of the people who matter most to us. We need to be better prepared.
Moderator: When you mention a "literacy of death and dying," what do you mean?
Pearson: Unless you actually take a course on death and dying, you don't know much about it. There is a lot of literature on the subject but it's hard to read up when you're in the middle of caregiving. Also, the literature generally focuses on the person dying, and that is very helpful but that doesn't really address the caregiver's experience and what it means to be the survivor of this ordeal.
Dr. Stubbs: As we were working, we came to call this experience "death and life." What that refers to is how we, the survivors, or the witnesses, really deal with dying whenever it occurs in our lifetime. This state or quality of life has not been so-called in the literature, and it's something we felt really needed to be explored more. When a death happens to you, it does change your life. Certainly it changes the dying person's life, and we're better at being able to understand that transition, but we felt not quite enough attention had been paid to the transition that survivors go through as they try to understand death and life. Part of the reason for that is that we live in a death-phobic society, and we're not encouraged to learn more about the topic, and even if you did want to learn more about it, it's such a taboo topic that you might find yourself scurrying away from it. It's not something we readily say, "I want to take a course on that," or "I want to learn more on that." We naturally avoid this topic.
colbie_WebMD: I lost a classmate and teammate to a car accident last Saturday night, and I catch myself crying every now and then and laughing other times. Is this normal?
Dr. Stubbs: I would say that it's very normal. Our grief reactions are quite individualistic. One of the things we learned in our work, which we had taken away from it as a tenet, is that every death is unique, and so is every way of coping with death. You may feel periods of humor, and even in terms of how long those emotions will last, all of those are highly individualistic.
Pearson: Another aspect is, and we learned this interviewing people, a sudden death is very shocking. A death in which you're caring for someone, you have time to adjust. When it's a sudden death, there's no time. So you have to allow yourself plenty of room to adjust, but also to the shock.
Moderator: What are some of the biggest challenges for family caregivers?
Dr. Stubbs: One of the biggest ones we found, is the "fud" factor -- fear, uncertainty, and doubt. What this really refers to is the fact that for caregivers, it's hard to plan. One might know that the death is coming, but yet it's uncertain, because it's not coming tomorrow at 12:30 pm. It's very hard to know how far along a person is in the death process. The entire process is marked with ambiguity and anomalous events.
Pearson: Another aspect of caring for the dying that we discovered as we worked, was liminality. Liminality is a term that anthropologists have used to describe the transition that goes on during a rite of passage. What we came to appreciate was that the middle stage of transition, the liminal state of any passage is characterized by things being strange, anomalous, unpredictable, and sometimes just plain weird. People feel during liminal times that they are neither here nor there, and that is very much what the caregiver experiences during the last weeks of a loved one's life.
Moderator: If someone is thinking about caring for a dying loved one at home, what are some of the things they should take into consideration?
Dr. Stubbs: One of the first things to take into account is to realize how well motivated we are to undertake this task. It's quite common to want to keep your loved one at home. In a recent New York Times article, the data was given that 90% of people want to stay at home, so the person you're caring for will most likely say that they'd rather be at home. At the same time, you as a caregiver, will probably want to honor that request, whether out of love or duty. Family members want to be taken care for at home, and we want to do that work. The first thing to keep in mind is that you're going to want to do it. The second thing to keep in mind is that while you want to do it, others might want you to do it as well. One of the major constituents is the health care system, 196 billion dollars worth of work every year. That's to the good if you don't find this work to be too costly in terms of emotional or physical or monetary toll. One needs to keep in mind that there might be very important costs to you to do this work, that we very much want to do for our loved ones.
Pearson: One thing all caregivers need to do is be prepared to ask for help. All hospices offer rested care and you can appeal through your insurance for other support. But don't be surprised if things become overwhelming. Be prepared to do what you have to do. The thing about caregivers is that we are not organized. We don't have anyone out there advocating our rights or watching out for our health. Do be willing at the outset to acknowledge that it might be too much and be prepared to have a plan B.
Dr. Stubbs: As far as that goes, if you should find that it is too much, don't beat yourself up about it. That's one of the hardest parts. You're trying to do the most you can, and if you find yourself being stretched to the limit, sometime people might feel as though they failed. Get the support you need, and don't let yourself feel even worse that you're not fulfilling this responsibility. It's very hard, and learning more about what caregiving entails can help you with that task, and can help you be able to say "I'm feeling too stretched and I can't do this much more." If you're too stretched, the person you're caring for won't be getting the kind of care you want to give to that person.
Moderator: What are some of the hidden costs of home care for the dying, and how can I deal with them?
Dr. Stubbs: There has been some research in the past while, 10 years, about the emotional cost to caregivers. Some of the ones documented have to do with emotional stress people feel, more depression and alienation. We know that caregivers are at risk for those kinds of emotional stress; lately, there have been new studies about physical stress. A very recent one coming out of the University of Pittsburgh in 1999 suggests that when caregiving is stressful, the spouse of a dying person is at a higher risk for their own morbidity. This really underscores that anecdotal information that people have had for years in the field, that it's hard work to care.
Pearson: Other costs that have been hidden that are being revealed are financial costs. Many people have to curtail their hours or take leave or quit their job. This not only means they don't have their income, but also losing their pension benefits. There are a lot of financial considerations that most of us don't give a thought to when we are at the outset.
Moderator: Among your findings, you mention three main points. The first one is "every death is unique." Could you explain what you mean by that?
Dr. Stubbs: When we first were beginning to research this topic, we were coming away from our own experiences as frustrated individuals, and when we began, we thought there must be a template for how a good death should happen, and we wanted to find that out by talking to people. As we became familiar with other stories and our research, we realized what a folly that was, and that you can't generalize, but only learn from the unique experiences that people have. We came away from our research realizing that although there are commonalities, each situation is quite unique. What is good advice for one person is not good advice for another. It doesn't mean you have to reinvent wheels all the way through it to travel down the path, but it does mean that we have to be respectful of the fact that every family has its own situation and personalities to deal with. To look for the template and then compare what you're experiencing to some "12 step" way of dying will only bring you and your loved ones heartache.
Moderator: Another finding is that "God is in the details." Tell us what you mean by that?
Dr. Stubbs: This is related to the concept that every death is unique. We decided that it was in the telling of individual stories that we learned what we needed to know. With something as ungainly and mysterious and taboo as death, we decided that the best educator is word of mouth. Caregivers who are often too tired to tell you what it is they learned have many insights to share. If you have a friend that has been through this, you'll learn things that may help you in your unique situation later. The insights caregivers have, if we can listen to their stories, can be immensely helpful as we begin to put together the pieces that will help us in our own situation. The details in one person's story are a treasure for another caregiver, when they end up in the same, but different situation later.
Pearson: In our book we focused on a variety of experiences. There are 14 chapters and slightly more than half are the accounts of home caregivers. The others are by professionals who deal with the dying and their families all the time. Those insights are also very useful to caregivers because these are the people that we work with, the oncologist, paramedic, nurse, minister. So those details from the professionals are also good for caregivers.
Dr. Stubbs: Another interesting thing about the details that professionals give us, is that sometimes in the midst of a caregiving situation, you may feel that the professionals are out to get you, and that they're thwarting you when in fact, what's most likely happening is that the professionals have a different set of perceptions that they're operating within. If at a more leisurely time you can read an account of that person's work, and how that person approaches their work, you may feel a little less that that person is out to get you, when that person is out to do the best job that they can do given the parameters of their work.
Moderator: You third point is that the "past is prologue." Can you enlarge on that?
Pearson: Well, although we do lack a basic literacy about death and dying, each of us has a lot of experience. Most of this is unarticulated and unexamined. Yet this feeds into our current actions whenever we are in the middle of another dying experience.
Dr. Stubbs: One of the things we have advocated in workshops we've given is to make a timeline which details your own unique history of loss in your life. This can take the form of you writing down lots of the losses of family members, or even a social figure of prominence (JFK, Princess Diana) -- all these losses are experienced, and once you see them on the timeline and note your own age and what was happening for you, maybe even thinking about what the people around you reacted, what your feelings and emotions were after these events -- then the unexamined becomes more visible to you, and we found that when people look back at this personal information they've documented, they're able to see that they used this strength here or that this was a confusion they had. We bring our own store of history to bear in other situations. We've found that when people do this kind of exercise, they note family strength. People can draw on that and feel more confident that they will have that strength to draw on in a family crisis, and also identify what kinds of questions they have that may linger. This is a very useful exercise.
Moderator: Is there some sort of training I should get so that I can be a better caretaker?
Pearson: I wish there were. We are starting to see some good things on the Internet. One of them is www.thirdage.com. That is a course for long-term caregivers and caregivers of the elderly. We have yet to find anything that is specifically about care for the dying. We would love to provide that.
Dr. Stubbs: One of the difficulties is that even if you're fortunate to be enrolled in a death and dying course in a college setting, that doesn't have the immediacy or approach that a caregiver in crisis really needs. Those courses are nice for people who have the luxury to reflect, and to have that information in an overview course is phenomenally of help to caregivers. What Cynthia and I are keen on doing is distilling this information out in a more immediate way that will address caregivers of the dying.
Pearson: Also in September there is going to be a series on PBS, which is" On Our Own Terms." What they are expected to do is open a dialogue on end of life care, so anyone who is wanting to become acquainted and more literate can start there.
Dr. Stubbs: September 10 through 14th on PBS.
Moderator: Why do you think caregiving for the dying is so rarely discussed?
Dr. Stubbs: I think because of our natural tendency to flee from the topic of death. We wish we were immortal, and it's hard for us to recognize that our relatives and we, too, will die. I think that the natural taboo makes it very hard. In addition, once you are confronted with caring for a dying person, your life does change. As much as you want to do as much as you can for that dying person, you don't have the time to talk to others. What we learned from talking to caregivers after the fact is that they have so much to tell us, which is why we feel enriched from the stories we collected from people. You can't talk to someone in the midst of it, and in the midst of it is often the time you will have to recall some nuggets of insight of others. We urge people to talk to others once they pass through this, so they can get that direct information from them.
Pearson: Another reason is that it's just simply dying can be ugly. It's hard, difficult and people -- the human body is beautiful when it's healthy, a wonderful thing when it's working right, and when it's not, it's a mess -- and people naturally shy away from discussing messy subjects. One thing that prospective caregivers and anyone can do for current caregivers is let them have their say. Go ahead and ask how things are going and don't be afraid to hear the details.
Dr. Stubbs: We felt that listening again to the details that our caregivers have told us about enriches us, even though some of those details were hard to hear. Our perspective is that what we don't know can hurt us more. So some of the most intimate questions about how to manage incontinence or manage pain at home can be dealt in a better way if you hear about how someone managed that, rather than have an overly glossy view. Not every death has difficult aspects to it, but there may be some, and so the idea that you're going to encounter a home death where everyone's hair is in place, and everyone is smiling, and family members make amends -- this should not be your goal, going into home care.
Moderator: Sometimes caregiving seems almost relentlessly negative, but is it really all sadness or grief?
Pearson: No, it isn't, and it has aspects that are profound and moving. And it's like one person said to me: "It's like the bottom came out, bottomless love," and that's something that she didn't think would have happened if in effect her love hadn't been, shouldn't have been called upon to do so much in dire straits. It can be an extraordinary experience as well. We were just trying to correct a glossy picture that has been painted by people that want to encourage homecare. I'm sympathetic with them, and also know that people need to be prepared for what will really happen.
Dr. Stubbs: I would also say that one of the things we learned from our work is that people are incredibly resilient and deal with these difficulties in quite creative ways. As Pollyanna as it sounds, these accounts are quite inspirational and tell you about living with dying. They gave me courage to face death with a family member next time, simply by seeing how everyday folks cope with other people's dying.
Pearson: I remember now, exactly how she put this. She said, "Your heart breaks, but actually it breaks open." It was very nice.
Dr. Stubbs: That's the kind of insight that's inside millions of people that have done this alone, and have done such a wonderful job lacking some of the support we could give them, if we paid a little more attention. We win because they have advice to give us. We win because when things were too hard for them, we learn from that, and we can tell our policymakers what need to be fixed. I'm fortunate enough to have talked to people, than I ever was before.
Moderator: In what ways is caregiving rewarding?
Pearson: Well for one thing, if you know that your loved one is comfortable and content to be at home, that's a big payoff. If people have had a chance to discuss these things between themselves, it really helps. Education makes it possible. There have been circumstances in which a parent doesn't want to give the burden to their child. It gives the child the opportunity to want to make them comfortable. One benefit is just knowing that you stepped up to the plate and just did your best for the person you love.
Dr. Stubbs: The other thing that happens is that when you say to your loved ones, "I want to do this for you", and then mobilize yourself, you find that there are quite some spectacular people out there in the helping profession. We have a patchwork system, but that doesn't mean that those people out there working hard are not on your side; you begin to have a good sense of self-competence and confidence that you can mange this, and it makes the rest of your life ever much more fulfilling, because if you managed this, then getting to work on Monday isn't quite so hard. There are other payoffs.
Moderator: A loved one in the process of dying is afraid of their fate and constantly depressed. What can I do to help them find peace?
Pearson: I find that a lot pf people who used to resent or avoid metaphysical subjects become much more open to that kind of material. For example, my niece who died of a brain tumor was a very scholarly person, and her grandmother brought her a book about angels and she loved it. People need a sense comfort and this kind of material will provide it, if you can present it without putting them off.
Moderator: How exactly does one go about doing that?
Dr. Stubbs: I think you keep offering, and by doing so yourself, you may feel that you may need other people to help you. In this day of work, when people don't have quite so much time, it may be tricky to have someone else come talk with you, but this is where in my own particular family, the volunteers were wonderful in broaching topics that I couldn't broach. Hospice volunteers can be helpful at this. There are a number of professionals that you can enlist to help you bring these topics up in such a way that you might not feel so comfortable doing.
Pearson: For example, hospices always have a chaplain. Even if you're loved one is not religious, the chaplain is ecumenical. And they are very experienced with this spiritual troubles which accompany terminal illness.
Dr. Stubbs: If the loved one is concerned about what will happen during death, this is where the medical personnel are helpful in how pain will be medicated, and checking in with them. This is where we're fortunate to have more of a handle than we have had before.
Pearson: One last word: If the loved one has existing interests in science, there are books about there about science and medical realities. There are lots of ways to go at this that if you use your imagination, you can bring comforting materials to someone who is facing the end of life.
Dr. Stubbs: And part of the trick to using your imagination as a caregiver is to help yourself do that before you become so depleted that you have no imagination. You should talk to others, and we hope our book is helpful, and you should try to make a situation where you become more literate about these processes. The more you prepare, the better you will be.
Moderator: Why do you think the dreams of caregivers and the dying are so significant?
Pearson: We discovered that dreams are often the means by which people are making their transitions. When we are awake, especially when we are caregiving, we have a lot of physical routine tasks confronting us. In my experience, the dream states always help us with the unseen level of life, and that is especially so during someone's terminal illness.
Dr. Stubbs: Dreams also help us to put some meaning on what is happening. It's a replay in a way of what's going on, and something may occur to you because you remember the dream. You may be able to make sense of what's happening because of the dream, rather than the most intellectual daytime spots you may bring to bear. The dreams of dying people help them in making their transition as well; many people have reported dreams of travel, trying to get to that other world. We are cognitive beings, whether at daytime or at night, or when we remember that dream from the night before. It's another source of information for us, whether we're the caregiver or the afflicted person.
Moderator: Should we try to mask our grief around dying loved ones in order to keep their spirits up?
Pearson: This is a tough questions. Some hospice experts recommend that you honestly acknowledge to your loved one that you're sorry that you're losing them. The belief is that sharing your grief and your tears is healthy for all concerned. However, we all know families where that just isn't an easy thing to do. I think you have to take your lead from the loved one who is dying. It may be that everyone is having a stiff upper lip for everyone else. But you can sometimes detach when someone is ready to talk about their leave-taking. They may be wishing they're ready to go. Sometimes departure is harder for the survivor than it is for the person that is dying.
Dr. Stubbs: This is such a wonderful question, and it reminds me of where we started with the book, trying to say "gosh, if we could just answer this question." I think what Cynthia said is great, because it points to the fact that every death is unique. There may be general advice here, but what about your family? How is your family in relation to talking about these issues? Whatever you choose to do in the context of this advice and what may or may not happen, you will be the best judge of what you apply in your case.
Moderator: What advice do you have for family caregivers, current or prospective?
Pearson: Well, as we've been saying, find out as much as you can. Talk to other caregivers. If you know people who are doing this, ask them. If you know somebody who knows somebody, that's a resource as well. There are lots of people in our book telling how this experience went down for them. Basically get as much information as you can.
Dr. Stubbs: We really have a great deal of gratitude to those who were willing to talk with us, and we know that there are more stories out there. The more we can as caregivers talk specifically about our experiences, the more help we'll give to those that have to confront this in the future.
Pearson: All of our interviewees, when they got done with their interview would say to us that this was helpful. People really benefited from telling their story, so that's another thing that people can take away from this. It is a good thing to ask a caregiver for their story.
Moderator: Will you give us the name of your book?
Dr. Stubbs: Parting Company: Understanding the Loss of a Loved Ones - The Caregiver's Journey, www.partingcompany.com.
Moderator: Dr. Stubbs, Ms. Pearson, thank you both for joining us. WebMD members, please join us every Monday at 1 pm EDT here in the Mind Matters Auditorium for our live weekly event.
The opinions expressed by Dr. Stubbs and Ms. Pearson are theirs and theirs alone. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
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