Managing grief with Kelly Edmondson and "Timely Presence"

Many thanks to nurse and grief counselor Kelly Edmondson for joining me on Episode #170 of The Art of Medicine with Dr. Andrew Wilner. 

Kelly founded “Timely Presence” after the tragic loss of her oldest son, Darius, to SUDEP (sudden unexpected death in epilepsy). Darius had epilepsy that he treated with medication, but Kelly never suspected that he could die suddenly. His death was a shock unlike any other.

“Timely Presence” is designed to help people after the immediate social support surrounding the funeral disappears. The first 12 months following the loss of a loved one, especially on key days like anniversaries, birthdays, and Mother’s and Father’s Day, are particularly stressful. While friends and colleagues may wish to help, they may not know how. “Timely Presence” helps reframe the rituals that accompany these special days. As a bereaved mother and grief counselor, Kelly also offers advice for those suffering from grief.

For more information, contact Kelly at https://thetimelypresence.com.

#grief #death #bereavement @kellyedmondson @timelypresence 

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Transcript

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0:07

Welcome to the Art of Medicine, the program that explores the arts, business, and clinical aspects of the practice of medicine. I'm your host, Dr. Andrew Wilner. I've planned a great program for today, but first, a word from our sponsor, locumstory.com. Locumstory.com is a free, unbiased educational resource about locum tenens. It's not an agency. Locumstory answers your questions on their website, podcast, webinars, videos, and they even have a locums 101 crash course. Learn about locums and get insights from real-life physicians, PAs, and NPs at locumstory.com. And now to my guest. Today, my guest is Kelly Edmondson. Kelly is a grief counselor, a profession she chose because of her background as a trauma nurse and her experience of losing her son Darius. Kelly observed that while there is often an outflowing of initial support for people who are grieving, support fades over time, even though it is still desperately needed. Kelly's going to share some of her insights about managing grief and a strategy for providing ongoing grief support. Welcome Kelly Edmondson. Thank you. Thank you, Dr. Wilner. I appreciate the invite. Yeah, it's great to have you here. Let's start. Tell us your medical background first. Yeah. So I have been, have the privilege of serving as a nurse for the last 25 years. I started my career in trauma surgical neuro ICU. So I worked in a level one trauma center. Did that for years. Switched to the ED. I loved the acute side of trauma and so switched over to an ED and did that back and forth for several years. About 15 years ago, I was diagnosed with multiple sclerosis. And at the time, I actually was planning to go to CRNA school, but was a little concerned. I was a recently divorced single mom about my ability to practice. And so I entered leadership. And so I have found my niche. I am an executive nurse leader. Currently, I serve in a health system, Southeast United States with over 11,000 nurses that I oversee in practice right now. Wow. Yeah, so you gotta, you gotta adapt, right? One day you wake up and go to the doctor. I don't know, I don't feel good. Next thing you know, well, you have MS. So thanks a lot. That's right. And then you and your husband parted ways and left you with a single mother also, right? Yes, my mom had three, three young children. Three young children. Yeah. So it's like, whoa. So a lot of unexpected, unplanned for challenges. Well, I spent a lot of time actually in the trauma unit. I'm a neuro hospitalist and a lot of our consults come from the, we have a regional trauma center here in Memphis and a lot of motor vehicle accidents and things like that where patients are not waking up when they're supposed to wake up. So we, but you gotta hustle in the, being a trauma nurse requires a lot of hustle. It's not like, oh, I'll be there later. Things have to be done now. That's right. So, and now, well, you know, after 25 years of experience sounds like a leadership role is appropriate, right? You've seen it, you've been there and you know, you know what the nurses are dealing with firsthand. And maybe your insights can really help guide them to be more successful. You know, I, I feel like I practiced at the highest level, you know, the highest intensity level of care really in that ICO environment, but we also had the opportunity there to deal with people in crisis. And so the conversations, the connections, the way you support people through end of life. But I didn't know when I was 23 was that that was really preparing me for leadership and what it looks like to have high stakes conversations with people in really emotional times. And so everything kind of layers on to itself. Yeah, you know, the, the longer I practice, the more I take that into account, you know, when I am in the trauma unit, and I talk with families, often life and death situation, often the prognosis isn't good, but it's also usually not that clear. And trying to manage that, you know, I try and keep the conversations very simple. I tell my residents, tell the family, what you want to tell what you want them to tell their cousin who's calling from Chicago, what did the doctor say? That's right. You know, make it really simple, so they can repeat what you said, you know, not not in a condescending way. If they ask questions, you can answer them. But there's a lot of details that don't really matter. You know, what matters is, you know, are they going to get better or not? What are we going to do today? What can we do tomorrow? How's he doing? You know, sodium level, potassium level, the drip, all these things are very, very important for the care team. But I think, you know, they can just kind of crowd out the really key stuff that the family needs to know. So I think that you know, that's part of the art of medicine and always a work in progress. Every family is different. They have different health literacy. They come to it differently emotionally. You know, it's hard to kind of read the room, you know, in one minute, and figure out what is the best way for me to communicate what I know, which is usually incomplete anyway, because we're in the midst of getting things figured out. So I think that's a part of medicine that isn't formally taught. Usually, it's just something you have to figure out. We do now have a palliative care service, where they are taught and they do deal with families that's new for us. It used to be pretty much fall on me. And now we actually have a service where they talk to families about end of life or potential end of life or ongoing care and you know, what are their emotional and financial and you know, other considerations. So it's pretty complicated. So where does grief fit in to your day-to-day? In 2023, my oldest son who was diagnosed with epilepsy at the age of 18, incredibly disruptive time to be diagnosed with any chronic condition, but certainly one that requires medication, titration, and interruption of ADLs as we know it, really kind of slowed his progression through college, not driving. As you understand as a neurologist, the medicines can be harsh, they're harsh. And so he was diagnosed at 18. And we spent a few years figuring that out. And we did. And so he went on and went to school, became a realtor, with a focus on helping first time homebuyers realize their dreams in Columbus, Ohio. And in January of 2023, he went to sleep one night and seized and never woke up. So he died of SUDEP. Now, as a trauma and ER nurse, I was familiar with seizures. I really wasn't very familiar with SUDEP at all, though. Mostly we worked on managing them, I knew acutely how to keep patients safe. During seizure activity, I knew when people had status or, or other critical epileptic conditions, what we needed to do, but... Right, so SUDEP for our listeners is sudden, unexpected death in epilepsy patients. And it's rare. And it's, it's under a lot of study, but it's very hard to study because it's very rare. And there's often little or no warning that any particular patient is going to have it. So it's, it's one of those things that's studied, you know, in the lab and people have theories and, but you're absolutely right. Patients, well, they have a seizure and they don't wake up. And there's not a lot right now, all we do to prevent it is just try and prevent people from having seizures. But that's not always possible, even with, you know, good medications to keep them completely seizure free, doesn't always happen. And then the challenges of being an adolescent, you know, I, I treat adults, but adults kind of started 16 or so in the epilepsy world. And so, you know, not being able to drive, right? Because if you have a sudden seizure while you're driving, catastrophic. So that's kind of obvious, not being able to do, not swim alone, you know, kind of having a chronic illness that you don't want to have, having taking medications every day that don't make you feel good. Adherence to the plan is often difficult. And, you know, and then if you're, if you're a parent, right, you're going to be protective, probably perceived as overprotective by the, by your side, right? It's a big, I wrote a book called epilepsy, 199 answers. And, you know, there's a lot to deal with when you have epilepsy. And it's a pretty challenge. But suit up is kind of like, you know, worst case scenario. And I, sorry, you know, for your loss, it was probably no warning, right? Just happened. Yeah. So that when you're unprepared, you know, when, when people are sick, and you know, things aren't going well, you can kind of have a still awful, but you have a chance to kind of get yourself together, but just a phone call. Oh, by the way, you know, sorry to tell you your son died. Yikes. So that was pretty rough. Your other children are already with a younger or older at that time. So he was the oldest. So they were younger. My youngest, who was 22 at the time, was the one who called to let me know about Darius. So I was you talk about sudden and unexpected. I was on a cruise ship at the time that he passed away. So a life interrupted, for sure. For for all of us, you know, people never die at convenient times. Yeah, it's, you know, it's so it's like, yeah, you know, I was on vacation. It's so disruptive. Um, you know, funeral is going to be tomorrow, right? Or the next day, and the million things to do, and then you're upset, you know, there are, you know, interesting cultural rituals, right? That religions and societies develop, but how are we going to deal with this, you know, because you need a script, like you haven't done that before, you need a script, what do I do? And then you know, what am I feeling? And how do I how do I get out of this? Um, so you had to manage your own grief and the grief of your children. That's right. You know, three years ago, you said, it was three years ago, and the rituals, you brought that up. They're so important. We have so many rituals for the dead. We have so few for the survivors. So, you know, the the getting home, you're so busy planning all the things that you said, the obituary. What clothes is he going to wear? What's the order of service? What songs do we want played? Are we going to have doves? Well, there's all these decisions that are so rapid fire that it really take your mind is you're so in shock, and your mind is so focused on these tasks and rituals. What I didn't know, as the ICU nurse that told dozens of family members, I'm sorry, what I didn't know is what I was seeing then was shocked. The grief doesn't hit until there's time to sit in it. You are literally doing remote rote action after rote action for ritualistic practices surrounding death. We have so many, so many, and then you have the service, the funeral, and then there's nothing. Right. So usually the first week in the Jewish religion, for example, the family sits Shiva and for a week, people come and visit and tell stories, you provide food. And people visit, and it's pretty intense. Because, you know, there's like people in the house constantly. And then it stops. And I think, you know, what we're getting at here is when it is when that initial thing, you know, the initial, okay, the funeral, grieving period, okay, it's over, then it's like, well, okay, what do I do now? And who's going to help me? And how long am I going to feel this way? And I think, I think the rituals sort of dissipate at that time, right? People say, Oh, if you need anything, call me. But it's like, well, what do I need? You know, it's, and what do I say? Right? It's so awkward. So what do you recommend? Yeah, I think that I call that silence deafening. Because you are you're, you are surrounded by people, people are patting you and, and surrounding you hugging you feeding you even though you're not hungry, right? Everyone's there. And then they dissipate. And our society is really built on rituals. So we've got these few weeks, two weeks or so where you're surrounded, everyone leaves. What the research tells us is months three to six are when grief really peaks, because now I'm beginning to understand what absence means. Now I get a taste of what forever feels like. But there's no one there. And then I get hit with things like a birthday or a wedding anniversary. Mother's Day, right, where we have as a society, all these rituals built into the relationships, the memories, the presence of this person who's no longer here. And it is an assault. It is it is a re aggravation of the pain, the grief, and often the loneliness. You know, my first Mother's Day, I was just gonna say the empty seat at the table on the first Thanksgiving, right? That's right. First mother where we just had, we're recording today, May 11. So yesterday was Mother's Day. So imagine it's Mother's Day, and there's two kids instead of three, right? That's right. And that was my first holiday. He died in January, my first holiday without him, that that we had built rituals around was Mother's Day, which happens to be today's my birthday. So Mother's Day and my birthday are always very conjoined, right? Where and there's a lot of celebration built into those. And now they are completely different. And so if you don't have people around you who are attuned to that, and more importantly, are comfortable sitting in that with you, it makes for a very lonely experience. I did some reading about this. And I don't know one. I don't know if she was a psychologist or social worker, but said you need to plan on it, right? You need to plan on it that these are going to be difficult days. That's right. And you need a plan. You know, maybe you're going to go to the movies, maybe you're going to have a friend visit, maybe you're just going to go to the cemetery, but you need a plan. So at least it just doesn't grab you and you're kind of floundering. And that sounded like a good idea to me. You know, you can't do what you want to do, which is change it, right? That's what you want to do. And you can't do that. So none of the other options are really good ones. But you got to do something. So I think it's really, really tough. And yet, and yet it's something that we pretty much all of us go through, right? Everybody has parents that die off. And, you know, friends, you get older and older. Friends are less and less reliable, you know, and I mean, but yet when it happens, it's like, it's out of the blue, right? There seems to be a disconnect with how natural it is. And yet how we kind of, you know, if denying is the right word, everybody sort of admits to it if you push them. But you know, I mean, all of us think we're going to live forever, right? Despite the evidence against it. So what is a timely presence? Yes. So a timely presence is really a reframing of those rituals. It's a reframing of it. That Mother's Day, my family came to me unexpected with memories and stories and laughs and tears all around my son. And what they did was make what had been built weeks of tension building became tolerable. Because we sat in love and in his life and in the loss, we recognized all three, and we did it together. And I thought, well, this is much better than I had anticipated. And so his birthday is Christmas Day. And so that year, we planned while we were reframing Christmas. And for us, we celebrate the holiday. And instead, we now take a vacation. And I take some of his ashes. And he's traveling around the world with us. At Christmas, I have reframed the ritual that would have been sitting with his absence. And so with timely presence, what we do is we allow people who love the bereaved, love the griever, who care, recognize the loss, but don't have logistically, or maybe emotionally, or even psychologically the words to help carry someone through these very difficult times, this difficult space that's ongoing, right? Grief goes on and on. It's, it's nonlinear, but it's certainly ongoing. What we allow them to do is show up on these days that the research says are going to be more emotionally difficult. We show up on the emotional calendar, and we come with curated gifts that are personalized, reflecting the life and the love that was lost, that just say, today's your wedding anniversary. I know today's different than it has been. But I want you to know, I'm thinking of you and you're not alone, right? With a beautiful tribute gift that comes, and we do that all year long, based on the relationship and the emotional calendar that would be associated with it. And so it really is presence timed for when we know that someone will face grief more, act more acutely, more intensely. And that's the whole premise of timely presence. You know, I think one of the things that people struggle with, and including me, is, you know, when someone has lost someone, it's like, well, do you? It's obviously a touchy subject. And so that there's a, I think, an instinct to maybe avoid it. And what we were talking briefly, before I press the record button, about a program I did about a month ago with John Dikakis talked about grief also, and he had lost his son to a drug overdose. And I kind of gingerly brought that up, you know, did he want to talk about it? And he did. And he thanked me for the opportunity. So I found that was very interesting. And, you know, and so it may be that the instinct to avoid the topic is really wrong, that maybe it's better to give the grieving person an opportunity to share, you know, what they're feeling and their memories and bring that person back to life, if you will, at least, into the present. What do you think about that? That's the magic statement. So the bereaved aren't expecting you to fix it, right? This is an unfixable problem for me. I want you to acknowledge, it's a part of what I carry every day. And I want my person to not be forgotten. That's what people want. They don't want you to fix it. They want you to say, I know you're going through something, and I'm here. And the absence of recognizing what they're carrying is actually an additional burden for them. People don't want to feel alone in this. And I have to tell you, yesterday was Mother's Day. And so I got a text from a colleague. And it said, I used to be afraid to bring up losses and challenges because I didn't want to cause more pain. I didn't want to trigger someone with more pain. But the work that you're doing and sharing Darius and his story and your grief work has caused me to rethink that. So I'm thinking of you and Darius today. Happy Mother's Day. You're still his mom. That's a gift I received. That's a gift I received. What that meant to me is that my son's legacy is that people don't feel alone. There wasn't a bereaved mother on the planet all across our country who wasn't thinking about their child yesterday. Not all of them got the opportunity for someone to say I'm thinking of you. And so that's the best gift someone could give me is to keep my son's name forward. It's the sweetest word I've heard. And I haven't met a grieving person who hasn't wanted to feel like they're seen, they're heard that someone acknowledges the pain while recognizing that you shouldn't feel alone in it. Those are magic words. So is timely presence like a website that you go to and you sort of subscribe to it? Or how does that work? Yeah, so it's a it is a it's a website. They're an e commerce site. And it's a one time purchase. So you make the purchase once you give us the necessary details, and then we send the gifts out. And on your behalf, all year long, we send you a message that says, Hey, just wanted to let you know that Kelly's son's birthday is next week, the wind chime is on the way. So you're able to make the personal connection if you'd like. But it comes with a personalized hand signed note from you that recognizes them on the day. But the reality is, people care, you're busy, right? You're busy in your own life. And so the time to check in and know that this is the birthday, this is the anniversary, and this is the holiday, that's difficult to do. So we've made it logistically easy for you to show up all year with a one time purchase. So who is the person that does that? Is it the grieving person or a friend of the grieving person? It's someone who cares for the grieving person. So friend, we have employers, we have health systems are doing this for particular patients who may have had a significant event or loss board members, etc. So someone who wants to show care for the person who's living through the loss. And it's a surprise and delight. Because I tell you, the first gift comes shortly after the funeral, where there's still things coming, right? People are still remembering you. But the second gift is unexpected. The third is completely unexpected. The fourth and the fifth blow the socks off. Nobody remembers by that point. No one remembers. And then to receive a gift on the anniversary of loss, right? It's just, it's so touching. So this week, I had a gift that went out to a woman who lost her baby at 48 hours, her child lived 48 hours, her employer knew this, purchased a package last summer. Her Mother's Day gift arrived on Friday. The employer reached out to me and said, I would have never remembered to send this to her, right? I would never remember. And her employee told her, this this week has been so dark for me, God was in the details with me receiving this gift, right? I felt alone. And I just feel like you wrapped me in a hug. That's the magic of this. You can care and attend and not have to do. We step in and help take care of them on the journey. So in addition to timely presence, do you have any advice for people that are struggling with grief? Yes. You know, I'd say to people who want to support someone who's grieving, don't make them responsible for it. I think we want to do the right things. And we say, just let me know what you need. They don't know what they need. Here's what they here's what they need. They need you to show up. And so sometimes that looks like I am bringing dinner on Tuesday. I'm dropping dinner off on Tuesday, or I'll take the kids to soccer on Saturday. Or I'll come do laundry or I'm just coming to sit with you. No agenda, no plans. I will just be there and it will become what it is. It's a text that says thinking of you and a card just because that's what showing up looks like. I think we think it has to be elaborate. People aren't expecting their friends and loved ones to be certified grief counselors, right? They're not expecting a psychology intervention. They just want to feel supported and not alone. For the people who are grieving, what I will say is this. It's not abnormal. This is ongoing. One of the things that we talked about is, are there really phases of grief? I think there's a couple of things to note there. So one, Kugler-Ross, when she built that framework, she's really working with terminally ill patients. So she was working on dying and grieving, right? They were they were grieving the death process. But this was for that was built based on interviews with the dying. So do grieving people have some of the same things? Can there be anger? Of course. Is there denial? Of course. But the idea that it's phases, I think, causes undue pressure on the grief because it suggests that you should be graduating along this continuum. It's linear. And some days it's three years. Some days I'm still mad. I'm mad that there are interventions that the health system that he was in didn't do that could have avoided this. I'm mad that I wasn't more insistent that he get a service dog to help support through these. I mean, yeah, some days I'm mad. There was a long time where I would wake up and think, this is a really bad dream. Well, that's a little denial, right? That's a little denial. But you jump around. So it's not a continuum of healing or recovery. And the last thing is acceptance. What does that mean? My son's dead. I know that. There's nothing I can do around that. In fact, I've now dedicated my life to informing people about grief and how to take care of themselves and one another. That is true. I'm not at peace with that, though. That's not a it's a reality. It's one that stinks. It's one that's transformed and changed my life. It's not finality, though. It doesn't mean I'm not still grieving. I will grieve the loss of my son for the rest of my life. Right. He deserves that. He deserves that. He deserves for me to feel the vacancy of his presence. And so I will. And so grief is ongoing. It's linear. I'm not a huge fan of phasing. So what I would say to people who are in grief is it's OK for you to have pain. It's OK for you to be sorry. Grieving should absolutely reshape you. It doesn't have to define you, though. Right. So we can find a way to move forward through the grief. And sometimes that requires the intervention of a therapist, a grief counselor, expression, being able to talk through it. Sometimes I just had to make people uncomfortable and I just brought his name up and I could see them squirm. I could see it. But the people who are close to me have become comfortable with the uncomfortable because it helps me. It heals me. And I'm the one who needs the most support. Share your stories. Share your name. Reframe the rituals. Pick a day that's going to be different, difficult and make it yours. Make it new. Celebrate them in a way that feels great to you. And slowly but surely, you can find your way through to brighter days. Kelly, I really appreciate your insights and I'm sure that some of the listeners will find them helpful. How can people contact you? Yeah, so our website is The Timely Presence dot com. Presence as in support, not gifts. The Timely Presence. I do a lot of thought leadership on LinkedIn, Kelly Edmondson, and on Instagram at The Dot Kelly Edmondson. That is a reference back to my alma mater, The Ohio State University. And our Timely Presence is very active on Instagram and on Facebook. Timely Presence on Instagram and The Timely Presence on Facebook. A lot of teaching for both the grieving and for those who want to support them. That's great. Well, Kelly Edmondson, thanks for joining me on The Art of Medicine. Thank you. And now a final thanks to our sponsor, LocumStory.com. LocumStory.com is a free, unbiased educational resource about locum tenens. It's not an agency. LocumStory exists to answer your questions about the how-to's of locums on their website, podcast, webinars and videos. They even have a locums 101 crash course. At LocumStory.com, you can discover if locum tenens make sense for you and your career goals. What makes LocumStory.com unique is that it's a peer-to-peer platform with real physicians sharing their experiences and stories, both the good and bad, about working locum tenens. Hence the name, LocumStory. LocumStory.com is a self-service tool that you can explore at your own pace with no pressure or obligation. It's completely free. Thanks again to LocumStory.com for sponsoring this episode of The Art of Medicine. I'm Dr. Andrew Wilner. See you next time. This program is brought to you by Andrew Wilner, MD, FACP, FAAN. Guests receive no financial compensation for their appearance on The Art of Medicine. Andrew Wilner, MD, is a professor of neurology at the University of Tennessee Health Science Center in Memphis, Tennessee. Views, thoughts, and opinions expressed on this program belong solely to Dr. Wilner and his guests, and not necessarily to their employers, organizations, other group, or individual. While this program intends to be informative, it is meant for entertainment purposes only. The Art of Medicine does not offer professional, financial, legal, or medical advice. Dr. Wilner and his guests assume no responsibility or liability for any damages, financial or otherwise, that arise in connection with consuming this program's content. Thanks for watching. For more episodes of The Art of Medicine, please follow on YouTube or your favorite podcast player. Please share with your friends and subscribe. www.andrewWilner.com