Dealing with Loss:
A Conversation with Dr. Beth Cole

Mary: To put you in touch with end-of-life resources in Utah, KUED has teamed up with the Partnership to Improve End-of-Life Care in Utah. Tonight, we'll discuss support that's available as we come to terms with terminal illness. Our guest is Dr. Beth Cole, Director of Caring Connections, a hope in comfort and grief program at the University of Utah's Health and Science Center. Dr. Cole also teaches in the college of nursing. Thank you so much, Dr. Cole, for being here.

Dr. Cole: It's a pleasure to be here, thank you.

Mary: Let's talk about why end-of-life care is so important to Utahns.

Dr. Cole: Well, I think as people in Utah, like in the rest of the country, are living longer and as we have more older people, they aren't always necessarily healthy. And so the baby boomers are hitting this age where they are taking care of their parents. They are being faced with not only their parent's death, but also with the recognition as they get older, they will probably be dying too. And baby boomers like to take hold of everything and understand what's going on, and make choices.

Mary: Yeah, we're used to choices.

Dr. Cole: Right.

Mary: It's our generation.

Dr. Cole: It is.

Mary: So, why do you think people have a hard time with these conversations about dying? Why is it so intimidating to some people?

Dr. Cole: I think different people react in different ways. I know we'd like to say it will be a wonderful experience for everyone, but we can't always say that. I think it depends on where they are in their life. Whether or not it really touches their heart, or perks some questions in their mind, or whether they say, "I'm not thinking about that. Let's turn that off." So I think it depends on where they are.

Mary: Well, you and I were talking about how in this culture we don't like talking about dying. We don't like dealing with death.

Dr. Cole: No we don't like to talk about it. We are very youth-oriented. Our culture wants everything to be perfect and right. And certainly that would be our goal, but that's not how life really unfolds. All of us are going to be faced with death, all of us are going to have to make choices, and the best time to do all of that is when you're feeling fine.

Mary: Right. When you're healthy.

Dr. Cole: That's right, and when you talk about it with your family you're able to say, "I would like this and I wouldn't like that" and "Let's have music and let's have this good time" or something like that, but you get some choices about what's happening to you. Now that occurs when you have a chronic illness and you know it's going to lead to your own death. However, there's certainly a lot of traumatic deaths that occur in Utah where you don't have a chance to say goodbye.

Mary: Right. You don't get that resolution that is so important. I just want you to talk a little bit about the Partnership to Improve End-of-Life Care in Utah, because part of your goal is to start those conversations.

Dr. Cole: Right. The theme for our Partnership is "Living and dying; let's talk about it." We hope through the End-of-Life Care Partnership in Utah that we can achieve a few things. One, would be information. People need information to make decisions because they want to know what's going on with themselves as well. So, we tried to provide information through the Web site at www.carefordying.org, onferences and town meetings. We try to link people with services. We have information about resources in Utah, such as support services, legal information, and all of those kinds of things. Then the third thing is, as you are informed, and as you are linked with the correct services you may need, you can make better decisions. So that's what we're trying to achieve. The Partnership is made of many, many people.

Mary: It's a great goal. Dr. Cole, you are an expert in grief and bereavement, and when we watched this Moyers' show, what we saw was a lot of overwhelming sadness. I mean, is this what grief looks like?

Dr. Cole: I think there is a lot of sadness around death, but we shouldn't be afraid of that. It's really a sign of how much we love somebody, or our ability to care for somebody else. Certainly, this sadness is how we let go, but hopefully it's not all sad, and our lives aren't pervaded by total sadness. Hopefully, there is some joy in your life, and in the living of this person who may be dying in the future, but is living here today. So, hopefully there is joy in some of the things that you are doing together.

Mary: Okay, and lets just talk about some of the signs of grief; the different ways that people grieve.

Dr. Cole: That's really important, because not everybody is going to grieve the same, and if I say the 12 standard responses of grieving, or something like that, don't think everybody is going to have everything. It's the just common kinds of responses to grieving. And again, if you go to www.carefordying.org, it will go into a lot more detail about them than what we have today.

People are certainly aware of the sadness and the depression that often comes with grieving, and the loss of someone that you cared about so very, very much. Anxiety is very common. When someone close to you dies, you realize that we're all vulnerable, that we all might die, and you see it around you when you're driving down the road and you see it more, and people become extremely anxious. That's something that people don't know. The other thing that people recognize often, is that they get angry. They may get irritable. We all have that in us, but some people are very gentle souls, and all of the sudden this anger is coming, and they're going,"Why am I so angry all of the sudden?" But it can be that you're really sorrowful that this person has died, and you're angry with them for leaving you. And, so it's not so uncommon.

The other thing is that it affects people's spirituality--what they believed about God, how they felt about themselves, what was the meaning of life? It can really shake them to their boots. That's why you hope there are lots of people around them that can comfort them and be supportive of them. There's other things that I think are very important to know about grief, and that has to do with the confusion. There is something about grieving that makes us forget time, makes us forget the normal things that we do for ourselves, so you have to be thinking about that. You still have to eat, you still have to sleep, and take care of yourself. But people become very distressed by the fact that they forget appointments, that they forget to do things, and they think, "Oh, I'm going crazy." You're not going crazy, you're just experiencing grief and it can be so profound. The other thing that people don't know about is that grief affects us physically. We know that sometimes we don't want to eat and sleep, and those kinds of things, but it gives you stomach aches, and those kinds of things, and people don't realize that it can also be grief. Not that you shouldn't check it out, you should always check it out, but those things may compound other kinds physical problems you may have.

Mary: It's all part of the normal grieving process. I like what you always say, "There is not right way to grieve, everyone does it their own way." At what point, might you need to get help?

Dr. Cole: You need to know yourself. People who have had profound losses, very traumatic experiences, if it's multiple losses, like if you've lost three people in the last year: your best friend, a parent, and a grandparent. Multiple losses. Just think of the confusion that you've had for a whole year of your life. You do need help probably, in just making some sense out of it. Again, different people will seek help in different ways. They can get it from a mental health professional. If they have a wonderful cadre of friends, maybe their friends will help them. But, often people will find that there aren't people to talk to about it. That their friends aren't comfortable talking about it. Or, you've talked about it twice, and they don't want to hear it the third time. You need to find someone who you can talk to.

Mary: You hit on a thing there. Friends aren't comfortable talking about it. I think a lot of people are uncomfortable talking about it, so they don't know how to deal with someone who is either dying, or who is grieving for someone who has died. They don't know what to say. They tend to distance themselves. What are things that people should do in those cases?

Dr. Cole: Okay, I'm going to take them separately. I think the person who is dying, we don't know how to talk about death, so we can't talk about it. Remember that they're living. They're not dead. It's the same thing that you would do for anyone. "How are you feeling today? Is this a rough time for you? I'm sure this must be very hard. Hope you know how much we care about you. I'd like you to know that." Or, "Can I do your grocery shopping for you? How are things going?" That would be someone who may have maybe three months or six months to live. They may be healthy, walking around, doing everything, until just a few days. So, treat them like their alive and a real person. I think, they're still who they were.

But when people are grieving, again sometimes we stand off and say, "I don't want to interfere, if I ask them a question it might make them cry." Well crying isn't bad, crying is a way of letting go and being emotional. Sometimes it's part of the healing process. So, don't be afraid of the crying. But please, again, treat them like anyone who is need. Say, "I hope it's going okay for you, anything you need, this is my story about someone I loved that died," and just be there for them. Listening is the best gift that you can give to someone. We were going to talk about healing…

Mary: Yes, yes.

Dr. Cole: This is part of that talking about it. Healing is part of that. But there are other things that people like to do when someone has died and certainly we know about funerals and memorials and things like that, which allow us to say goodbye and to do it in a setting where there are other people around us who can comfort us too. More than that, there are things like planting a tree, planting a bush, a rosebush, a lot of people like to do that. Writing a letter and sending it off as a balloon. Writing a letter and putting it in a book. One of the things when someone dies is if people would write letters to them remembering that person, and then they can keep them and read them later. But there are wonderful memorials to that person. Scrap books, Christmas ornaments to remember that person, birthday parties for the person that isn't there anymore but you're still remembering them. There are lots of things.

Mary: See, all of those rituals that you talk about, those rituals of grieving, really do help healing, help people to get through it.

Dr. Cole: The thing is to approach anniversaries and birthdays thoughtfully. Don't think, "I'm not going to think about it, so it's not going to bother me," when their birthdays come around.

Mary: Because it will hit you. Guaranteed, it will hit you.

Dr. Cole: It will you hit you. Definitely, so plan something that day purposely to remember. Some people go on trips, so they're not in the same place where the person had died thinking that they're going to avoid it. Well, it just goes with you.

Mary: That's right.

Dr. Cole: So, people talk about throwing a rose, or anything that is some sort of remembrance.

Mary: I liked what you say too, be good to yourself, just be good to yourself.

Dr. Cole: You have to be kind to yourself. When you're grieving it's a difficult time, but it doesn't have to be horrible. It can be a remembrance, a lot of memories, beautiful memories of the person. You want to remember not just their death, but their life with you. Even if it's an infant, you have memories of what it was like and memories that you can recall. Keeping track of beauty, and what they have given you as a human being. Especially when we have long term relationships with people, they've given us so much.

Mary: Very important. Very Important. And as a final wrap-up, Dr. Cole, let's just talk about what services are available in Utah to help people who are grieving.

Dr. Cole: Well, I'll tell you that there are many services, and we're very lucky to have them. Certainly, the Partnership can link you up with some of those. There's Candlelighters for cancer in children, there's the Cancer Wellness House, certainly there's Primary Children's Hospital that offers services. We at Caring Connections at the University of Utah offer a wide variety of short term grief groups and counseling. These grief groups are wonderful opportunities for people to talk about their experiences. Mortuaries also have resources. Just come to the Partnership's Web site and that will help you find something in your area that's right for you.

Mary: Something that's right for everyone. Thank you so much for being here and sharing all of that with us. If you would like more information about what is available in Utah to help you get through grief, please call the Partnership to Improve End-of-Life Care in Utah at 888-918-4490 or visit the Web site at www.carefordying.org. For KUED, I'm Mary Dickson, and goodnight.