Breast Cancer Conversations
When Relatives Go Rogue
Laura Carfang 00:03
Hello and welcome to breast cancer conversations podcast brought to you by surviving breast cancer dashboard. I am Laura Carfang breast cancer survivor and founder of surviving breast cancer.org. A nonprofit organization providing community education and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Welcome back to breast cancer conversations, everyone. It is so nice to be speaking with all of you today. And thank you for tuning in and listening to our stories, our voices, and partaking in the conversation with us. I would also like to give a huge shout out to all of you who listen each week and some of you who decided to come in and meet on a Thursday night thrivers meetup that we host every Thursday night at 7pm. It was such a surprise and honor to actually meet you and see you on a zoom call and see your beautiful faces and chat. I love getting to meet you guys hear your stories, get to know each other and really develop these friendships. So you are always invited to any of our events, webinars and meetups. If you are new to breast cancer conversations, I'd like to give you just a very quick rundown of some of the awesome work that we are currently doing, and other ways that you can engage with us.
Breast cancer conversations is made possible by our nonprofit surviving breast cancer.org. hop on over to surviving breast cancer.org so you can sign up for our weekly newsletters. We send out weekly newsletters and Mondays we send out feature Fridays going into a deep topic on Fridays. Every other Sunday, we host a webinar series specifically for the metastatic breast cancer community. On Thursdays we have our Thursday drivers meetup, which is always a great time. And then once a month on the first Sunday of the month, we meet for our breast cancer book club, where we get together and discuss books that have absolutely nothing to do with cancer. So if you want more information, head on over to surviving breast cancer.org forward slash events for all the details. All right, now let's talk about today's episode. In today's episode, I am joined with Jennifer O'Brian, author of the hospice doctors widow, and Valerie Armand, a nurse and practicing death doula. I'm sure these names are familiar to you, because we've been having these great conversations every week with these two amazing women.
And today the conversation continues as we talk about the rogue family members that kind of bubble up out of nowhere and share their opinions. Understand that death and dying is very stressful, traumatic, it brings up emotions maybe we've never even experienced before. And I think everyone tends to have an opinion about it. Because we're trying to cope with it. We're trying to come to terms with what is happening around us. And of course, we only want what is best for the person who is ill, potentially terminally ill. And in transition and eventually passing. These are very stressful times. And we want only what is best for them. But what is best for them? Is it what I think? Is it what my siblings think? Is it what my aunts and uncles think or spouses? Is it what the doctors think? How do we understand what the person actually wants, it's really important to have these conversations before the crisis actually happens. Because that will provide a roadmap for some of these difficult conversations. The last thing that we want is when someone is in their last and final days, either in hospice care, or at home or at a facility is to be running around looking for these documents looking for, you know, where did mom leave this file? Or what were her last wishes? I think she wanted this, but I'm not quite sure.
So how do we handle these conversations with our families and our relatives, we all want to do what is best. But sometimes what is best is actually letting that person know, you know what this is what mom or dad wanted. This is what my sister wanted, this is what my spouse wanted. And they designated me as being that person to advocate for them. So in today's conversation, we're going to talk about how to navigate some of these rogue family members and then provide you with some tips and strategies that you can have in your back pocket. Welcome to the conversation.
Jennifer O'Brien 04:06
If you are the person, that that the patient that the person who's dying, is is confiding in, it's, it's a good idea that especially if there are other adults involved, whether it's, you know, their siblings or your adult children, it's a good idea to to establish that you're the that you're the one whether it's with the patient together so like you know if if your husband is the one that you're making clear that your parents understand that so that because because that's another place I think things can go sideways is when a couple for example has talked things through very thoroughly, but The person hasn't told their own parents or the adult children that they've talked through things very thoroughly. And so like, you know, this didn't happen to me, it didn't happen to me in any of my situations, because I was it. But you know it? Well, it could have happened, I guess, in a couple of them. But it didn't, because it was just very clear that I was it. And I think that times when it's not very clear, that that can end up causing, again, a bunch of, you know, some of the questions, Valerie, that you talked about earlier with the with the crowd, and that there's one who kind of gets it, and there's kind of one who sometimes doesn't get it and just kind of if you have that position, when the patient is able to talk about it, and has their own agency, as Laura brought up in their own, you know, controlling end of life that is a that's a valuable thing to bring to the dynamic.
Abigail Johnston 06:00
So I'd like to go back to Valerie, and how do you recommend as a person who is dying? How do you recommend they deal with that rogue family member who isn't necessarily on board, I mean, obviously, it sounds like what Jen is saying, talking and more talking, it is helpful, so that they know that it's your wishes. But since there's always one in the family,
Valerie Armand 06:28
document, document, Miss attorney.
Abigail Johnston 06:32
Okay, that's a good recommendation.
Valerie Armand 06:35
You know, there's a lot to be said, for your advanced directives. There's so many different ways and avenues nowadays to do that. There's our traditional living wills toward you know, very end of life, there's the polst, the physician order for scope of treatment, and every state's a little different. But that's, you know, considered signed by a physician in the medical order that would, you know, when you are able to make your own decisions and find that yourself, there's very little wiggle room for somebody to dispute that, whenever you may be in a position of yourself that you can't speak for yourself. It's a layer of protection, it's a layer of support for you know, the family members that do get it and want to support your wishes again, so then that rogue person has to just go sit down or go, you know, make noise elsewhere. You know, and that's really helpful. I'm also an affiliate for something called video, my informed decisions on video, which is a new emerging avenue for people to document on video, what their wishes are. So that's kind of innovative, where there's, you know, you scan a QR code, a QR code on a card, like, it's like your ID or your insurance card, and you pop up on the screen on any device, saying, My name is Valerie Armand, and then an event that such and such, this is what I do and do not want, again, that's just even less wiggle room for somebody to dispute. Your your wishes. And again, verbally, you know, just keeping your team know your team know who's going to be there. You know,
Jennifer O'Brien 08:26
I think the ideal situation is when the patient, him or herself, takes a moment with the rogue person and says, I know, this is so hard for you. But, you know, john, or Joe or Susan really knows what I want. And I and I would love it, if you could just support her or him in that it's most powerful coming from the person who's dying. If that's not an option, I think, and I am sure you've experienced this, Valerie, there is usually there's someone else to in the family who who recognizes that someone's going rogue and can can intervene a little bit and say, you know, I know you see things differently, but we need to do we need to do what mom or dad or whoever wants.
Valerie Armand 09:28
So as a nurse, I'm always going to advocate for the patient. Yeah, you know, and sometimes you have to really kind of reframe things, you know, like we were all here we all, you know, just that gentle outside, not your regular family member that you can lash out at, you know, like I verified I heard what she said, You know, so that's brings me back to saying hello important is to, to shop for your healthcare just as diligently as you shop for your aggressive treatment.
Laura Carfang 10:09
Valerie, that's such a good point. And I appreciate you putting yourself out there saying leverage the nurse leverage this non family member person to help us have these conversations, and what great resources as well. For our listeners, have you ever been in this situation before? How have you dealt navigated that rogue family member who, you know, kind of sees things differently? How did you have those conversations? Let us know let's continue the conversation and feel free to send me an email or check us out on social and we'll pick up where we left off. Thank you for tuning in and listen to our podcast. If you'd like to find out more about our organization and upcoming events and ways to connect. You can find out more by visiting our website at surviving breast cancer.org. And we'd like to acknowledge that all of the information on our podcast is for personal experiences, and it is not a substitute for professional medical advice. You should always consult your medical care team. If you're looking for specific topics or would like to be a guest on our show, feel free to contact me directly at Laura at surviving breast cancer.org. And of course, we have a couple social media handles you can follow us that as well. For example, surviving breast cancer or all one word, as well as our podcast specifically breast cancer conversations. Until next time, keep on thriving.