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MAGAZINE / Mar-Apr 2006 / The Olivia Dukakis Interview

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An Interview with Olympia Dukakis:

Being Olympia

GARY BARG: As someone whose father experienced excruciating bone pain while living with multiple myeloma, I am really grateful for your work with bone pain awareness.  I think itís hard for family members to truly understand that level of pain. Thankfully, now people living with bone pain can show their loved ones and tell them, ďLook, this is what I am talking about.Ē 
: Right. You donít have to live with it. You can reach out and find other solutions. Maybe there is some pain, but there are also solutions.  I donít know what kind of solutions my friend Jessica was exploring;  I assume that she and her family did the best they could with what was available at the time. 

GB: What is also nice about the campaign is that now you, as a friend, can actually provide them with information and direction; it is something you can do to help.
I think that today, without being too critical of the hospitals, you really have to take your health into your own hands. Get as much information as you can. People do make mistakes and are overworked; there are a lot of things that can happen when you donít have access.  I think this is an opportunity to get access to improve the quality of life.

GB: I always say that people arenít only misinformed, but they are malinformed about clinical trials; in other words, what they think they know is not only the wrong information, but it is also worse than the truth.
True. There is never too much information. There is always some other piece of information somebody has that can help you or your loved ones.

GB: We always say that the caregiver should become a member of the loved oneís care team. Caregivers must be able to provide information to other members of the team and be heard and be respected for it.
I always say that whenever a person gets sick they need advocates because itís very hard when you are dealing with the fear and the pain, and all the options and all the side effects. So you really need one or even two advocates. My husband has been very ill and I felt frequently that I had to be his advocate, challenging this doctor and that medicine. I felt it was really important because he was overcome and he was frightened. He had a brain aneurism. The person who is ill often canít think. He or she canít even figure out whatís the next thing to do for themselves. So somebody has to be around, and I think that caregivers are the ones who can do that. They are probably the ones that will have to make the call.

GB: We call it becoming a Fearless Caregiver.
Fearless is a good word for it. It does feel that wayóthat you have to be fearless. And you canít worry about what other people are going to think about you. I had one doctor say to me, ďIím covering for another doctor but he does not have any patients in the hospital right now.Ē I said, ďOh, really? My husband is in the hospital and he is his patient.Ē Weíre sitting in the hospital, and I am in the hallway trying to cope with the terrible pain my husband is in, and this woman is repeatedly telling me that his doctor doesnít have any patients in the hospital. After she said, ďHe does not have any patientsĒ several times, I started to yell at her.   And she said, ďWhy are you yelling at me? Do you realize you are yelling?Ē And I said to her ďDo you want to know why I am yelling? Because I am frightened for my husband. Thatís why. Iím frightened. Itís nothing personal. It has nothing to do with you. Itís my feelings for my husband and the situation he is in. Thatís why Iím yelling. Iím trying to get someone to see him in the hospital.Ē  She thinks she is going to stop me by telling me to get back into control. Iím not shutting up because of that.

GB: And you shouldnít. You are a Fearless Caregiver.
I am. I understand it. I learned thatís how you have to be. I donít like pushing my weight around people. I donít like being put in that position. But at a certain point, you feel like you have to. Who else will take care of my husband, my children and my mother?

GB: Exactly. Thatís your role as an advocate. I donít think that many people know that you might be the only Academy Award winner who was also a physical therapist.
Yes. I was. This was when people were first dealing with polio.

GB: As a health care professional, what advice would you like to share with family caregivers?
The hardest thing to do is acknowledge the sickness and avoid denial. Focus on today rather than on mortality. Figure out what you can do today and do it. You do have a choice regarding where things are going. I think you have to do that and plan.

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