Nora McInerny on Moving Forward with Grief

Episode Transcript

Dr. Correa:
Welcome back to the Brain & Life podcast by the American Academy of Neurology. Audrey, it's so good to see you again.

Dr. Nath:
Hello.

Dr. Correa:
Our guest today, I first saw her on her Ted Talk that she did.

Dr. Nath:
Oh, cool.

Dr. Correa:
Been listening to her podcast for a long time. Her podcast is called Terrible, Thanks for Asking.

Dr. Nath:
Oh, I love it. That's great.

Dr. Correa:
Largely, it's because she has taken a perspective on dealing with loss and coping with changes in life and rolling with the punches and just trying to enjoy and have some perspective to laugh and cry when needed.

Dr. Nath:
I'm all about that. I think especially as a pediatric neurologist, we often get consulted when really, really terrible things happen to families and young people, and it's really kind of changed my life, my clinical experiences, because now I know, gosh, nothing's guaranteed. A little bit of laughter is okay by me as well. I'm very much all about that kind of way of thinking.

Dr. Correa:
Well, she started down this whole path when her love and husband was diagnosed with brain cancer.

Dr. Nath:
Oh wow.

Dr. Correa:
A type of brain cancer we know as glioblastoma multiforme, and really in that same year had so many other things going on that you'll hear about, but she started the podcast. She just released a new book, Bad Vibes Only, and that's after other books. It's Okay to Laugh, Hot Young Widows Club, and Happy Endings, A Memoir.

Dr. Nath:
No Happy Endings, A Memoir? I love it. Okay, I got some reading to do now. This is incredible.

Dr. Correa:
I think these are great books to check out. Really interesting perspective on preparing to be a caregiver, dealing with the challenges and the loss that can come with being a family member of someone in a severe condition, and personal loss, too, but I really hope you all enjoyed this episode.
Welcome back to the Brain & Life podcast. To all of our listeners who are fellow podcast nerds like me, you may have likely heard of our next guest. Today I'm joined by Nora McInerny, an American author podcaster who opened up her heart and her life to all of us on her show, Terrible, Thanks for Asking, where she shared her experiences with caregiving for her husband with brain cancer, then grief, and loss. In less than one year, Nora's life collided with extreme loss after a miscarriage, losing her father to esophageal cancer that spread throughout his body, and then her husband had brain cancer all within several weeks of 2014. Most recently she's released a new book, Bad Vibes Only. In this essay collection, she speaks to the oppressive challenges of the optimistic culture to those who live through loss and many other topics relevant to all of us. Nora, thank you so much for taking the time to talk with us on the Brain & Life podcast.

Nora McInerny:
Thank you for having me.

Dr. Correa:
I'd like to go back, I think you've said before on one of your podcasts, to the before times. Can you take us back to when you met Aaron and your relationship together as you grew?

Nora McInerny:
Yes, Aaron and I met and I was 27 years old, which in the Midwest, rest in peace if you're not married by 27, at least in 2009 or 2010 when we met. I think my parents had given up on their third child. My little brother was already married. Everyone else was already married. Everyone else was doing fine, but not me, and I met Aaron-

Dr. Correa:
Tortoise wins the race.

Nora McInerny:
Tortoise wins the race, baby. And I did in a lot of ways because he was worth it, and I roll my eyes at that now because really, is 27 that old? Absolutely not. It was like every annoying story you've ever heard. I wasn't even looking, and then we met and it just worked, and I was so unaccustomed to a man liking me and treating me well that I did not know how to do it. He liked me and it was so easy. I'd never had anything be so easy, and we were together for a year, a perfect, wonderful, movie montage of a year.
And then, he has a seizure at work and his coworker calls me and I am no longer in the before times. When they put him in the MRI, I got to push his little wheelchair down to the MRI. There's something about the door to that room closing where I thought, oh, this is a before moment, and after this moment, no matter what happens, things will be different. Either we will have walked to the precipice together or we're going to fall off, and he got out of that and we were told he had a brain tumor and that he needed emergency brain surgery, and a month after that we were married and 13 months after that we had a child, and our third wedding anniversary was Aaron's funeral.

Dr. Correa:
Did you do everything this fast or was this a completely different change on the pace of your life?

Nora McInerny:
I was the kind of person who, I can always decide really quickly about people. I'd never had somebody decide that quickly about me, and it felt so amazing to be chosen and to be chosen by a person who was worth being picked by is a really, really different feeling and was a very, very new one for me.

Dr. Correa:
In that feeling, in that sense, that intensity of realizing that someone was picking you in the way that you feel and connect to others, did you feel that immediate commitment to be fully in to everything that was needed and what was coming?

Nora McInerny:
Yeah, I did. I never thought of any other option. I never did and I had no qualifications. I had never seen anybody be sick. I'd never been around a person with cancer. I'd never had any real challenges in my life thus far. And there was not a part of me that thought, oh, I got to get out of here. Oh, this isn't for me. I knew before he went into that MRI that whatever came out, I would be there for.

Dr. Correa:
No, I think that's something we heard in common from many of the caregivers and parents, or family members that we've spoken with, but many of them just felt like they had the main quality and requirement of just love and dedication to that person, and getting applause for just being there sometimes feels like they demeans that love and that dedication that they have.

Nora McInerny:
I think so. I think that sickness challenges, all of these things, I think they reveal what a relationship always was.

Dr. Correa:
Let's talk about the next steps for you and Aaron through all this. He had a seizure, which at that point, you guys I'm sure both had little knowledge or background. Had you known people with seizures or epilepsy before?

Nora McInerny:
We knew nothing. We were so delightfully stupid to the point where right before the MRI, when they were like, "Has anything happened recently that could have given him a seizure?" I was like, "Yes. We had our floors refinished and they smelled really bad." Obviously, that's it. That's it. I texted my sister-in-law's dad to be like, have you ever heard of anyone having a seizure after you do their floors? He was like, What? No. I was like, Okay, look, I'm just spit balling here. No, we didn't know anything, and truly those hours that we were waiting in the ER, we were saying things like, "Yeah, people have seizures. What are you going to do? I can't believe they're taking this so seriously. We got to get out of here. It's Halloween. It's Halloween, and you're 30, I'm 27. We're trying to party tonight." So, we had no idea. When we found out he had a brain tumor, I was like, that's fine. Brain tumors are not cancerous all the time. When we were referred to an oncologist, I told him, Well only an oncologist can tell you it's not cancer. Truly magical thinking.
We went to a neuro-oncologist and we walked into that appointment thinking, he's going to tell us you don't have cancer. He had glioblastoma. We knew nothing about it. We didn't want to know anything about it. We wanted to have our normal lives with a side of cancer if possible, and that was how Aaron wanted to approach it, so that's how I approached it. I think there are wives or partners or even patients who would say, "Okay, we're going to go do a trial." First of all, we were young, we had to work. We still had lives. We couldn't uproot ourselves to try to get him into a program, and plus, we just didn't want our lives revolving around medicine. I have a certain amount of regrets around that, and also not, because the three years that we were together, we really, really did have a great time. We had a great time. We were just so present for each other, even when it sucked, even when it was just going to chemo or going to his neurologist appointments, and that was his whole approach and I just followed suit.

Dr. Correa:
It sounds like early on, some people would characterize both of you in the way you approached it as being very optimistic. I might wonder if it was a defense mechanism or if it was denial.

Nora McInerny:
All of it.

Dr. Correa:
Was that just part of each of your personalities or how would you describe it?

Nora McInerny:
Aaron was just naturally buoyant. Aaron was a naturally joyful person, even in the face of this, I think. I don't think you can deny... We Googled it once and that was the only thing we looked up, and the first thing we both saw at the top of the page was three to five years. Three to five years. I've never closed something faster. We never looked it up again, and one of his first appointments, he told his doctors, "I don't ever want to know how much time you think I have," and if you haven't been in the center of a medical emergency, you know what people love to ask you as though your life is an episode of Grey's Anatomy?
They love asking, it's such a strange thing, what's the prognosis? I'm like one, who told you that word? Two, it's just such a strange thing. And I remember Aaron going, "Yeah, I don't know. I asked to not know." I do think a part of that is self protection. I do think a part of it is denial and also, not denial. I think we lived knowing that the future for Aaron would be abbreviated, and also knowing that we did not want to live under the shadow of a ticking clock. It's like, let us do the things that the doctor suggests. Let the doctor be the doctor.

Dr. Correa:
Well, and it sounds like you both chose to be consciously and mindfully present with each other throughout it, and not necessarily to allow everything else that was going on to take you away from your relationship.

Nora McInerny:
Yeah, we just did normal things all the time.

Dr. Correa:
During Aaron's experience with glioblastoma, you both started to co-write a blog, My Husband's Tumor. What made you explore that experience in that way and start opening yourselves up?

Nora McInerny:
Aaron was a designer. He thought in pictures and I think, in words, and from the moment we met, when I had fun ideas, he would help me turn them into things, and it was just one of the coolest things about him, and he was also the first person who took my writing seriously. I was working at an ad agency. We worked at rival ad agencies in Minneapolis and he would read my writing. Hard hitting things like our leggings pants. He thought they were brilliant. He was like, "I love your writing. You should write," and I always kept a journal, and I just remember sitting in the hospital next to him writing.
Opening up a notebook and writing and writing down observations, writing down feelings I was having, writing about sitting in this room with him, looking out and being able to see the city that we had just been a part of, filled with people who had no idea that time had just stopped in this room for us and our world had shrunk to the size of this hospital, the size of this room, the size of this bed. He had asked me to be the person who emailed everybody, all of his friends, make a giant, giant email chain with everybody in it, and I would write up what happened and he would read it, and then I started this blog on Tumblr, and I just wrote it for myself and for him and then for his mom, and then for my mom, and then for the people who knew us and there was a password on it and I would write or he would say, "Write about this," and then the password came off and then people kept reading it.
I wasn't thinking like, wow, how can I turn this into a job? I wasn't thinking about how can I make this into content. I was thinking, how can I survive this and how can I make sure that Aaron is not just a sad story? Because the blog that I wrote had so little to do. If you read it, you would have no idea what treatment he was getting, because as I just explained to you, I didn't understand it and neither did. It was about our life and it was about being young, married people. I think the tagline for a long time was, this isn't a cancer story, it's a love story with some cancer, and that was really important to me as a tiger wife for him, that he not be minimized into just this sickness, and that's where it all started. That's where it all started.

Dr. Correa:
You both teamed up to do so much and to share so much on your own terms. Part of that was saying goodbye on your own terms. Can you share us the story of Aaron's stint as Spider-Man?

Nora McInerny:
Yes. Aaron was such a Marvel super fan, such a Marvel super fan, specifically a Spider-Man guy. Our wedding topper was, not a topper at all, because we didn't have a cake. We had brownies and cheesecake.

Dr. Correa:
Sounds great.

Nora McInerny:
There's so much about Spider-Man, there's so much about the Marvel universe that resonates when you are stricken with something horrible, which is, in the Marvel universe and in Spider-Man specifically, he's just a regular guy and this thing happens. He's bitten. He's bitten by... Spoilers for Spider-Man. He's bitten by a radioactive spider and his whole life changes and most of the changes he has to weather on his own, and before he died when he was in hospice care, the people who work at hospice is so great. All of a sudden you're like a DIY healthcare person. The night that he entered that, you don't know, and we'd asked not to know. I don't know if you have three months, I don't know if you have three days. I don't know if you have three hours. Will you write your obituary with me? And Aaron's best quality, Dr. Correa was that he made everybody feel like they were in on the joke.
The party could not have happened until they got there. Thank God you're here. We wrote his obituary together and we would do that I think, as a way of also exploring the fact that... His life was coming to an end. It was obvious. It was obvious how the tumor was progressing at that point. We didn't need another MRI to show us. You could tell. So we wrote his obituary together and it starts per mort, Aaron Joseph, age 35. Died due to complications from a radioactive spider bite and years of crime fighting a nefarious criminal named Cancer who has plagued our society for far too long, and we laughed and we cried and it took us maybe an hour and I just shut my computer, and I remember saying, "Well, I hope we never need it," knowing we would, and two weeks later, we did. It was published and it went viral, and 2014 viral was different.
There weren't a million different algorithms giving us all these different versions of the internet. There was just the internet and Aaron was everywhere. I think that it was because the facts were not as important as the truth, which is that he was that kind of person. He was a person who whose great joy was helping other people feel joy. I think the most important, most transformative thing that, that obituary did for me is so many people reached out. Thousands of people, thousands. If I go into my email and I go back to the end of 2014, it's so many messages on Facebook, on my email, on Twitter. However people could get ahold of me, they would. It was strangers who had gone through sometimes something similar and sometimes something very, very different, telling me about the thing that they had been through and letting me know that I was not alone, that they had shared in this kind of suffering, this depth of suffering, and that inbox became my podcast, Terrible, Thanks for Asking, because I kept thinking, why are these people telling me this?
Why me? And the answer is, you can only say it to somebody else who gets it, and these people were saying it to me because maybe their friends and family had stopped asking about this thing. Maybe their friends and family had never been comfortable talking about this thing, but they could just shoot it off into the ether to an anonymous, faceless person and know that it landed. As much as your own pain makes you feel like you are the center of the universe, opening yourself up to other people's stories reminds you of the very most important thing, which is, you aren't. This is everybody and the things that you think are only ever going to affect you, no, no, no, no, no. There's someone out there who knows.

Dr. Correa:
At an essential moment in your life, you tapped into a community that helped you cope and support you through that transition. But after loss, the more typical reaction we get from the people around us is to sort just pat you on the back and then wait for you to move on. Pass grief. What has been your experience with that?

Nora McInerny:
Oh, that I wanted it. I wanted to move on so badly. I wanted to be the best at grief and I wanted to get it done quickly and efficiently and beautifully. I wanted it to look good, too, really. I wanted to be like, "Oh my God, yep, and she got through it and everything was fine. Honestly. Things were better than fine. Things were great." The more I tried to fake it, the more obvious it was to me, I was never going to make it. This was going to kill me. The loneliest I've ever been was probably the year after Aaron died because the more that I told people that I was fine, and I told everybody that. I told people who loved me and people who probably knew better, that I was absolutely fine, that I was absolutely fine, and I was not. I was deeply, deeply, deeply unwell.
And I think that the people who really love us, they would like to know that information. I also know that not everybody is a safe place for your suffering, but you have to find somebody that you can do it with. It is absolutely vital to our survival. It was obvious to me in my heart, in my soul, there would be no moving on. I gave a whole Ted Talk about, we don't move on from grief, we move forward with it. The further away I got from Aaron's death, I did not feel better, and a part of that was because I had not truly accepted the loss. I remember being like, yeah, I accepted it. I know he is dead. No, no, no, no, no, no, no.
There's a difference between living acceptance, processing your loss, and just living your life as though nothing has happened. I remember Aaron's neurologist saying to me, I called him and said after Aaron died, "I feel like I'm losing my mind," and he was like, "Of course you are. Of course you are." He's like, "Think about everything that has happened. Your brain is a full sponge right now. There is a lot going on." I was like, "Okay, okay." Nothing was better. I could also sense people's patience wearing thin, people's interest in this pain wearing thin, and it's just a very emotionally unsafe and very lonely place to be.

Dr. Correa:
What were the things that helped you move forward with that grief?

Nora McInerny:
Ugh. Therapy, which there's a whole chapter in my first book where I was like, I don't need therapy. I know it might help some of you losers, but not me. I don't need that at all. I probably should have gone while Aaron was sick, but guess what? When would I have gone? I had a kid, I had him, I had full-time work. Teletherapy hadn't been invented yet, or certainly wasn't popular. Therapy wasn't affordable. There were a million reasons why I could not just make that happen and I didn't. I have a lot of compassion for myself in that way. Also, having a community of people who understood what I was going through and leaning into that. Aaron and I had not wanted to be cancer people, so I did not know any other women who were going through that, but after Aaron died, I was introduced to, against my will, to this woman named Mo. Her husband had died by suicide and a few months before Aaron.
Those are very different kinds of deaths, both brain related, and we had not known each other before, so we had no expectation of who we should be. We just met each other as we were, and Mo was my lifeline. Mo became really, the center of my world and we became each other's person. Eventually, I think one of the most healing things that I have done is to fall in love again, and I met my current husband about a year after Aaron died. He had gone through a horrible divorce and he was healed. He had done a lot of his own healing. He was further along in his own grief process than I was, but he had the ability to be present for my pain, to not be afraid of it, and having a person, a safe place to be, really helped me. It helped me fall apart a little bit, which I really needed to do.
I didn't have the luxury of that even with all of my privileges when I was alone with a toddler. I just didn't. It's hard to point to one thing and be like, this is the thing. I think it's a lot of different things, but my friend who's a psychologist, Dr. Anna Roth, had said something to me once, which is, it's not the time passing that helps. It's what we do with the time. That first year after loss, the only thing I had done with my time is avoid, is try to avoid my feelings. Well, that's not going to do anything. It's not going to do anything. Sitting with that discomfort in therapy, on the phone with Mo, with Matthew, however I did it, that's the only thing that helped.

Dr. Correa:
I'd like to tell our listeners, we're going to include resources for support and mental health support in the show notes, but also, there is a national lifeline and mental health support line where you can dial 988 at any time if you need support. Nora, I wanted to go back. Thinking of where Mo was there for you and where your now husband was there for you to support you, many people feel paralyzed on what to do or say to someone after a tragedy. If you were there for Nora in the past, what words or actions and support would you offer?

Nora McInerny:
I always tell people to do what you can do and what you will do competently and most importantly, competently, consistently if possible, and humbly always, because I had this neighbor, truly one of the greatest men of all time, Mark. Mark was an engineer. Mark was not going to be a person who could sit on the couch while I watched Real Housewives and cried. That was not what Mark could do. You know what Mark could do? Snow blow my walkway, so that's what he did. That's what he did. Unless I woke up and peeked out the window, I would never know it was Mark. I would never know it was Mark because he didn't want credit for it and he didn't need a thank you. When you are afraid of what to do, you do what you can. You do what is in your realm of expertise. I had this friend, Evan, who was so lovely, and he would come over and he would literally just come down to the basement where I was and he would just sit and watch whatever I was watching. It was so wonderful. I don't know if Evan and I ever talked about our feelings at all, but he was there physically, which was so nice to have a person who is there. You just do the thing that you know can do. That's it. You don't have to overthink it. It doesn't have to be fancy.

Dr. Correa:
That's such a great point, that there's no exact words, there's no specific action that everybody needs. It's really just doing what you can. Thank you so much, Nora, for being here, sharing yours and Aaron's story and opening up to our listeners on the Brain & Life podcast. Now, I'd like to know what's next for you, Nora?

Nora McInerny:
Well, the book is out on October 11th, and I will be on tour for almost all of October. I will be in 18 cities doing live shows of the Terrible, Thanks for Asking podcast and then free book events. Aaron's deathiversary is in November, and I always reserve that month to just have a little mini meltdown and I like to have that time reserved. Do I always need it? No, but it's good to have it, and that's I think, one of the most important things that I've learned to give myself and other people is time, because it's not as though this feeling, it's not as though these losses expire, they really change over the course of time.

Dr. Correa:
Wow. Well, coming to a city near you soon. Nora McInerny and the Terrible, Thanks for Asking podcast. We will include notes to her website and the podcast in our show notes. Thank you so much, Nora, for joining us. I have so many other things I want to talk to you about and I'm sure our listeners can find those topics also on the podcast.

Nora McInerny:
Next time.

Dr. Correa:
Yes. Thank you, Nora.

Nora McInerny:
All right, thank you.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.
Welcome back to the Brain & Life podcast. We are now joined by Dr. Maisha T. Robinson. She's a neurologist at the Mayo Clinic in Florida and the founder of their first neuropalliative care program. She also works in research focused on palliative care in neurology, and she serves as a mentor and leader in neurology through many programs. We're excited to have her here on the podcast. Maisha, thank you so much for taking the time to help us understand more about palliative care for those living with neurologic conditions and their families.

Dr. Robinson:
Thank you so much for having me.

Dr. Correa:
Well, in this episode, we had a great discussion with Nora McInerny about her story that's captured in her books and in her podcast, Terrible, Thanks for Asking, where at age 31, in less than a year, her life collided with multiple extreme losses in various ways. She had to quickly confront the realities about coping and personal loss and caregiving for her husband, her father, quality of life, dignity in end of life care, and finding her own way without those she loved afterwards. Let's start with simply, what is palliative care?

Dr. Robinson:
Palliative medicine is really a field that aims to help improve quality of life for people that have a serious or advanced medical condition. I'll mention that it's often equated to hospice care, and while all hospice care is a type of palliative care, certainly all palliative care is not hospice care.

Dr. Correa:
That's excellent. There's that distinction between what's different between end of life care and hospice care compared to palliative care.

Dr. Robinson:
When we think about palliative medicine, we think about the whole person and the whole family. It's really a person-centered, family-centered approach to care. People think about us when people are nearing the end of life, but really we can provide support and care for our patients and their family members throughout the course of disease. I used to be that person that would say, "Hurry, hurry, hurry. Somebody call palliative care, my patient's about to die," but what now we know is that patients can benefit from palliative care even at the time of diagnosis throughout the course of disease, and we think about symptom management, family and caregiver support. We're helping think about how the disease is impacting people's finances or their spirituality. We think about coordination and follow up as well, and then when people get closer to the end of life, and usually we say when somebody has about six months or less to live, then hospice is appropriate to really provide the kind of support and the kind of care people need when they are at the very end of life.

Dr. Correa:
Sounds like there's a role for the ideas of palliative care throughout the time of diagnosis to later stage in the condition, and it's not just hospice and pain management.

Dr. Robinson:
That's absolutely correct, and in fact, it is often helpful to meet people, particularly with neurologic disease when they get diagnosed. As we know, many times cognition can be impacted, so when we're thinking about some of the decisions that people want to make later in the disease course, it's helpful to have the person's cognition as good as it can be when we had those initial meetings so they can participate and provide their preferences for care, particular to their loved ones.

Dr. Correa:
For Nora and her husband Aaron, he was diagnosed with glioblastoma multiforme or GBM, and of course, in the process of all that, they got involved with palliative care decision making. For our listeners, can you describe what is this brain cancer or how do you understand it when you get involved in taking care of patients with GBM?

Dr. Robinson:
Sure. Glioblastoma is a type of tumor, a cancer that arises from actually the cells in the brain. It usually stays in the brain unlike some other tumors that are stage four, meaning malignant, and at times it can effect the lining of the brain and sometimes the spinal cord, but usually it stays in the brain, and unfortunately, it is a terminal diagnosis. The life expectancy is usually somewhere around 13 to 14 months. I have a significant role in the care of people who have glioblastomas because of the fact that there are symptoms that we co-manage with the neuro-oncologists. We help provide support to our patients and their caregivers. We help think about goals. Given the fact that we know what the trajectory of this disease looks like, what are people hoping for? We ask to make sure that what we're doing aligns with those goals. Equally as important in knowing their goals, is thinking about what kind of medical care they want whenever they get to the end-of-life.

Dr. Correa:
I want to go on now to some of the examples of those decisions that people have to make, whether it's Aaron who lived with GBM, and he and Nora had to make some of these decisions, or just using that as an example for other late stage neurologic conditions. What are some of the decisions that people need to start considering in a later stage process like this type of brain cancer?

Dr. Robinson:
When we talk about advanced care planning, it's really the process, and I say process because it's usually not something that's done in one visit, but it's the process of really outlining one's wishes for end-of-life care. There are two basic things that are done in an advanced directive, which is the document you complete that outlines these wishes. The first is identifying a healthcare surrogate. If you can't make medical decisions for yourself, who would you like to designate to be the person to help you make medical decisions? That person should be knowledgeable about your medical condition, but also, the person should be able to make decisions in an emotional time that align with your preferences. Healthcare surrogate, who would help you make medical decisions?
The second part is what decisions you actually want made when you're at the end-of-life. That really has to do with whether or not you'd want to have life prolonging measures such as being on a ventilator or breathing machine. Really thinking through some of those preferences can be helpful not only to outline for your medical team, but also, for your loved ones and specifically for the person that's going to help you make those decisions.

Dr. Correa:
This isn't just thinking about it through yourself and making the decisions and writing them down. It sounds like these are detailed, in-depth conversations to have for those you love and those who are designated as your decision maker.

Dr. Robinson:
That's absolutely correct. I think that writing it down is very helpful because when people are in emotional situations, sometimes they can forget what a loved one has said, but equally as important is the conversation. If you have a document but nobody knows what it says, you haven't engaged in any discussion that might not be as helpful as having the conversation and then also documenting it. I'll say that the people that you list as your healthcare surrogates, the people that are going to help you make decisions if you don't have the ability to make them on your own, they should also have a copy of those documents as well and your medical team should, too.

Dr. Correa:
Maybe outside of having a specific diagnosis, when should each of us be thinking about making some of these decisions and writing them down and having these conversations?

Dr. Robinson:
I say anybody over age 18 should really be thinking about identifying a healthcare surrogate and even completing a living will, thinking about what kind of medical care you would want at the end-of-life. Some people think, 18? That's very young. Just think about it, when we go get a driver's license, they ask, would you want to donate your organs? If you stop for a moment and you realize that donating organs means you have already died, and so 16 year olds are filling out those forms, and so I'm asking you to think about what kind of medical care you want leading up to the end of your life. These are scary conversations, I think for a lot of people. I would encourage people to really get with your family, even over a holiday, just get it done one day, sit around, talk about it, fill out the documents and say, "This is a gift that we're giving each other." Nobody wants to make medical decisions for a loved one if you don't know what they actually want. So over 18, really be thinking about completing one of these documents.

Dr. Correa:
A big part of this as Nora describes, is the challenge of being that family member and a caregiver. How do you help have conversations and support the caregivers and family members of people that you're caring for in your palliative care practice?

Dr. Robinson:
Part of the beauty of palliative medicine is that it is really a team based approach. I'm a physician. I also work with nurse and social worker and spiritual advisor, nurse practitioners, physician assistants as well, and we try to provide care for the whole person and whole family. When I first meet people, we have an introductory meeting, establish rapport, but also, I really want to know how everyone has been coping with the diagnosis, whether it's new or something they've been dealing with for a few years. Oftentimes, when I turn to the caregivers and say, "How are you holding up?" tears start coming down their face. I don't think it's necessarily because they're sad that I asked the question, upset that I asked the question, but oftentimes, they're just grateful that we took a moment and paused and acknowledged them.
We talk a lot about the fact that caregivers of patients with neurologic disease can face some challenges that other caregivers, perhaps with people with cancers that are not in the nervous system, don't necessarily have to face both with the physical decline but also with the cognitive decline. This sometimes can be a thankless job, a job that as we know can be more than 24 hours a day, so our team based approach really tries to figure out how we can provide support not only to the patient, but also to the caregiver, whether that's in the form of additional resources or making sure that we're managing symptoms as well as we can to try to alleviate some of that burden and stress on the caregivers.

Dr. Correa:
Lastly, from all this time working with the community, living with different neurologic conditions and individuals and family members navigating the palliative care process, what have you learned that has changed the relationships with you and your family?

Dr. Robinson:
Oh, that's a wonderful question. First of all, I'll say in full disclosure, my family and I had not really had a lot of discussion about all of our end of life preferences, and in fact, I probably filled out my advanced directive only several years ago, even though I was talking about the importance of it with my patients. I sat down and actually did my own, and I encouraged my family members to do so as well. What I've learned is, what they want when they're near the end of life. What I've learned is how important these conversations are, and they can never be had too early. What I've also learned is that while these can be difficult discussions to have, there's a sense of peace and comfort once you have them because you feel empowered to be able to make the decisions that they want whenever that time comes.

Dr. Correa:
It's nice to be able to think of and to have observed positive experiences for individuals and families going through this and then try to take that back and think about, okay, well, how can that maybe help my own relationship with my mother and my family.

Dr. Robinson:
I agree with you.

Dr. Correa:
Thank you so much, Maisha, for taking the time and spending the time with us here on the Brain & Life podcast to help our listeners understand much more about this very challenging process, but hopefully, to give each of us and all of our families a little bit better comfort as we move forward.

Dr. Robinson:
I really appreciate the opportunity to join you today. I think this is a very important topic that doesn't get a lot of coverage, and so thank you so much for taking the time to do this.

Dr. Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org.

Dr. Nath:
Also, for each episode, you can find out how to connect with us and our guests along with great resources in our show notes. You can also reach out by email at blpodcast@brainandlife.org, and you can call in anytime and record a question at (612) 928-6206.

Dr. Correa:
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Dr. Nath:
Special thanks to the Brain & Life team, including...

Dr. Correa:
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Dr. Nath:
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Dr. Correa:
And Andrea Weiss, our Executive Editor for Education and News Publications.

Dr. Nath:
We are your hosts.

Dr. Correa:
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Dr. Nath:
And Audrey Nath, beaming in from Texas and on Twitter @AudreyNathMDPhD.

Dr. Correa:
Thank you to our community members that trust us with their health and everyone living with neurologic conditions. We hope together, we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
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Nora McInerny on Moving Forward with Grief

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