Caregiver Grief And The Pain Of Loving Someone Who Changed with Dr. Joann Schaeffer, Author of The Unspoken Side of Grief

Recording Started

0:17 Michael Mackniak: I see that effervescent smile. I was just reading over my notes and stuff like that. And then I wound up having this. I usually go into my calendar to get into these things, and then it wouldn't let me do it that way, so I had to go f find you.

0:38 Dr. Joanne Schaefer: Okay.

0:38 Michael Mackniak: So here we are. We finally got our ducks in a row. I'll tell you, man. Getting from Las Vegas to coming back and the time changes, and then people that I met there, I can't keep myself straight. I don't know if I'm coming or going.

0:54 Dr. Joanne Schaefer: I know it's been busy since we got back, too.

0:57 Michael Mackniak: Yeah, good, good. All right. So I mean, I've just I sent you over basically talking points, and we I don't follow script typically, but certainly at the outset, I like to get into it and then just go with wherever it takes us. So you ready to do that?

1:15 Dr. Joanne Schaefer: Yeah. So let me see here. I I just pulled up your uh your notes. Okay, so segment one, let's see.

1:28 Michael Mackniak: Uh you want to talk about the one thing that I want to make one thing that we need to do is to highlight your work, obviously. And that's why I said I want you to highlight your work and tell me because you'll you'll be way more. I hate when they sit there and read an introduction to somebody like at those conferences and they're just almost boring. You know, if you tell me what you're what you do, you're more passionate about it. And I know you're, you know, you're you're you're I read through your book and and I'm impressed with the the interviews and I love all that and I want to talk about all that.

2:02 Michael Mackniak: But you know, our focus, my focus in my work is long-term and caregiving and the loss of mental illness. And and I thought that you would be you could bring some real insight into helping people reconcile their own feelings of grief and loss from a diagnosis, and if that makes sense to you.

2:25 Dr. Joanne Schaefer: Sure. Sure. Yeah. So so segment, so we'll do my intro, I'll introduce your, I'll talk about my bio briefly, and then you were gonna talk about bringing down the different types and manners of loss, and then different types of loss inevitably equal different types of grief. And then then you're gonna talk about the long-term diagnose, long-term diagnosis and that ambiguous loss felt by caregivers.

2:57 Michael Mackniak: Yes.

2:58 Dr. Joanne Schaefer: And then you're gonna say, how do caregivers reconcile a fact they are mourning a loved one while they're still breathing? Yeah. And I experienced that with folks that lost their loved one eventually to a long disease, so they grieved twice, right? So these are grieving in the first the first wave.

3:19 Michael Mackniak: Well, and sometimes, you know, we could talk about this too, but the I remember have I met a woman, I think I told you this. I met a woman at a NAMI con conversation who didn't understand that her son's diagnosis of schizophrenia was son was permanent, and that you know, this isn't something that's going to go away like a cold, you know. Yeah, there's loss when you get that that diagnosis, right? So anyway.

3:49 Dr. Joanne Schaefer: Okay.

3:50 Michael Mackniak: Yeah, then you know what caregivers will go through that dark emotion where I what I'm getting at there is the resentment that people feel, or you know, I guess particularly resentment in what we were just talking about, how grieving for somebody who's in the room sitting across from you, you know, at the table. Yeah. And the refiner's fire, how moving through grief can build muscles we don't want to build, but we yeah, that's that's at the end of your book when you start talking about how how grief turns people it empowers people.

4:30 Michael Mackniak: Where are you now? Oh, sure.

4:33 Dr. Joanne Schaefer: Oh, segment five.

4:34 Michael Mackniak: Oh, yeah, yeah. Segment five. Yeah, at the very end, you talk about you know, you learn from grief and you become you learn new strengths that you may not know that you already have. And again, we don't have to fire file. I'm not gonna say the refiners fire, I'm not gonna say that. You can call it that if you want to. I just threw through that in there. It's just I thought that was really interesting. That yeah, you're a caregiver right now, it's a pain in the neck. You're you know, whatever feelings you may have about it, but you know, in the long run, you people do grow from this and continue to grow in life.

5:11 Michael Mackniak: Well, you know, that kind of thing.

5:12 Dr. Joanne Schaefer: Yeah, yeah. Okay.

5:13 Michael Mackniak: I want to get your message out there to people and and hopefully sell some books for you, you know. So make sure you got your book right. See your book right behind you.

5:22 Dr. Joanne Schaefer: So yeah, it's behind me, and then I have a copy of it.

5:26 Michael Mackniak: Yeah, and if you send me a link to it, I'll put that in the the description and all that too.

5:31 Dr. Joanne Schaefer: So okay. When are you gonna air this?

5:35 Michael Mackniak: Uh I don't know. I gotta just rolled them out probably within the next month or so, month or two. Yeah, and I'll I'll let you know when that's all when that's all happening.

5:47 Dr. Joanne Schaefer: Okay.

5:48 Michael Mackniak: All right.

5:48 Dr. Joanne Schaefer: And do you do any post-production where you edit out gaps or problems? Okay.

5:54 Michael Mackniak: In fact, all this conversation will be edited out.

5:57 Dr. Joanne Schaefer: Yeah, okay.

5:58 Michael Mackniak: Yeah, yeah, yeah.

5:58 Dr. Joanne Schaefer: So if there's something that I'm like, you know what, I'd rather say that better. Can I take another stab at it? I can do that. Okay.

6:05 Michael Mackniak: Absolutely.

6:05 Dr. Joanne Schaefer: Hopefully, I usually don't have to. Once I get on a roll, you know, I'm passionate about it that I I know.

6:11 Michael Mackniak: I'm like, yeah, I'm the same way. I could talk a dog off a meat wagon when you get me on a subject that I can know. Yeah. All right. So let me just start and I'm gonna introduce you a little bit and then away we go. Okay, okay, I'm glad you guys are all here. Welcome back to Holding It Together, Kinda podcast. I'm Michael Mackniak, and I'm really thrilled that I can welcome a friend who has done some really interesting work around grief. I want to introduce you all to Dr. Joanne Schaefer, and who has spent her career looking at the parts of caregiving that, you know, usually stay in the shadows.

6:50 Michael Mackniak: Dr. Schaefer, well, first of all, I want you to tell everybody about this work and and your your interest in the grief aspect of caregiving and and how you got into it and what you did to bring this book and show everybody your book, of course. What did you do and who did you talk to to get so much insight about the cycles of grief that we're going to talk about today?

7:16 Dr. Joanne Schaefer: Sure. Well, first and foremost, I'm a board certified family physician. And I also spent a good number of years in public health as the chief medical officer for the state of Nebraska, worked under a fantastic governor, and then spent some time in some other spaces, the payer space, the VC world, and helping some private venture capitalists do some work in healthcare. And right now I'm a healthcare consultant, a physician, an executive coach. And about the time of the pandemic uh started, I I wanted to do a lifelong project that I had um just dreamt of doing, which was writing a book on grief.

7:58 Dr. Joanne Schaefer: And it's centered around really my best friend's murder when I was a medical student. And I, you know, I was a medical student. It was obviously very, very early in my career. And I just learned so much around her death and helping them to raise her children after that. And as I started to become an early practicing physician, I experienced death in that context as a as a as a physician. And then again, under the watchful eye of the state, I experienced a lot of other catastrophic things that happened to people.

8:37 Dr. Joanne Schaefer: And I just putting all of these things together, recognizing that there was a vast difference between the loss of a child and the loss of a spouse and a sibling, et cetera, that needed to be talked about, but it wasn't really talked about in any of the books that I researched. And then likewise, the context around the murder, such as if the death, if it's a murder, a suicide, a car accident, you know, the the manner of death really brought a different circumstance of grief that really didn't get a lot of attention either, in terms of how it impacted the grief process.

9:15 Dr. Joanne Schaefer: So that's what started me down this journey. And then I interviewed a lot of people through the course of the pandemic, and that's what gave life to the book. There it is.

9:26 Michael Mackniak: There it is. And I gotta say, and I think I said this to you when I read the book, and I read about your your best buddy there, unfortunately. I can hear your voice coming through it loud and clear. Like just talking to you now and hear reading the book, it's just so conversational, and it's you, and I that's is as I say, that's the highest praise I can give to anybody I know that writes a book. So it really is a great read. I I mean, it's hard to say it's a great read when it's uh such a heavy topic, but it really is something that's interesting because we don't think about the different types of grief.

10:09 Michael Mackniak: I mean, we lump grief really into a big uh a big pile and think it's all the same, and you spell out really clearly that it clearly it absolutely is not. So the unique perspective that you bring here is having gone through it in a personal level, a very intimate level, and of course on a professional level. The folks that that I uh reach, my tribe out here, are the people who are grieving, uh yes, but because of the situation they're in, they are still in the process of caregiving. And and make no mistake about it, I acknowledge all the time that a diagnosis, a chronic diagnosis, a diagnosis of severe and persistent mental illness, uh dementia, you know, you could go on and on.

11:00 Michael Mackniak: There is a loss there, and there's many types of losses, and and I want to get into that with you in a bit, but you already started to break down some of the different types of grief that people have, and you certainly highlighted some of the the important aspect that how one passes away or how one experiences grief, and and in fact, I would add when they experience grief in their life really impacts the type of grief that they go through. And one size does not fit all when we're talking about grief.

11:35 Dr. Joanne Schaefer: Absolutely. You would if you look at just basic grief literature or just on a Google search, you would think that there's one event and that everyone goes through the same process and it's kind of all you know, go through this stage, this stage, this stage, and then it's over, and then everyone gets back together.

11:53 Michael Mackniak: No, as the lay person, no, but as a lay person, we're talking about the seven stages of grief, right? Yeah, yeah. We're all we every that's like psych 101. Yeah, so so it is it's much like cancers. All every cancer is different, you know, right? And one size does not fit all. Exactly. So and and it's I mean, it sounds funny to say, but if it's like once you point that out to me, I'm like, well, yeah, of course, but you don't think about we just don't think about it that way. So kudos to you for even knowing that and seeing that and saying, Wow, I really want to I want to dig deeper into this.

12:34 Dr. Joanne Schaefer: So thank you.

12:36 Michael Mackniak: When we're talking about the type of grief that one goes through and caregivers that are that are caring for a loved one who more or less is not the same person that was there. Is this what you refer to as ambiguous grief?

12:52 Dr. Joanne Schaefer: Yeah, and just you know, kind of prolonged grief. I I saw it most commonly in people that had chronic, severe, persistent mental health issues that ultimately did passed away, people with dementia who had a very prolonged course who ultimately passed away, and people with chronic severe disease. You know, there are some chronic diseases that just end up where, you know, there isn't a treatment left and they pass away, or if it's a chronic uh course of cancer and that person passes away. And so the caregivers in those cases grieve those people twice, those loved ones in their life.

13:30 Dr. Joanne Schaefer: They're grieving the whole way through that process and then they grieve them again once they pass away. And the many interviews that I did, that they focused on the grief during their lifetime was almost worse than the grief after the person passed away. And they had this guilt during this time, but they had this profound guilt at the moment of death because of the relief associated with it. I talk about this in the book. The relief associated with it because they felt like they could never tell anyone.

14:04 Dr. Joanne Schaefer: But they had been living with this person who was suffering dearly for so long that once they passed away and they felt that sense of relief, they felt guilty, but it's not normal to watch a person suffer. And so it's when that sense of relief that they felt, it's not abnormal and it's not uncommon. And so I wanted to put that out there from the people that I interviewed. It's like, please let people know that that's normal and it's okay. But but then there's the other side of the point too, when it's just they're in that space where it's chronic, prolonged, and there hasn't been a death.

14:40 Dr. Joanne Schaefer: There's they're just this is life for them. And there's a running tally of guilt of, you know, they're grieving that what would have been a normal, healthy, living person that they see their other friends enjoying with their family members that they don't have. So not only are they grieving that, but they're also there can be an under-threading of guilt about that as well.

15:03 Michael Mackniak: And that's I think you're you're hitting so many buttons all at the same time with so many incredible points that you just made. I mean, you know, how many times you go to a funeral and it's oh well, she's in a better place now, you know, it's I'm forgiving you for her being gone, right? You know, whatever the case may be, and this ongoing reconciliation that we as caregivers and care providers do, is there something that you found that common thread that runs between some of the people you interviewed about how they decided to deal with that that guilty feeling, that resentment feeling?

15:51 Michael Mackniak: Because those those are real emotions that come up for sure. And and did was there some kind of a pattern that you saw of how people were able to deal with it?

16:01 Dr. Joanne Schaefer: Well, there was some sort of a feeling of, you know, my the best job I can do right now is to provide for them and give them the best life that they can have. And it may not be the ideal life that others would have, but it's the best life that I can give for them right now. And it's the best that I can do. And there was a lot of conversation about giving grace to oneself and having more patience with oneself. And I got to this by asking questions around, you know, I talk about this in the book a lot about if you could go back and whisper in your ear something, you know, that you know now that you didn't know after the event, what would you what would you tell yourself?

16:48 Dr. Joanne Schaefer: And the number one thing was I'd give myself more grace.

16:52 Michael Mackniak: And the second thing was a little bit later, you know?

16:55 Dr. Joanne Schaefer: Yeah. And the second thing was I'd give myself more patience. And then the other things that were pretty prominent was I would go into counseling earlier than I did.

17:05 Michael Mackniak: Nice. That's a really big one. Yeah.

17:07 Dr. Joanne Schaefer: That's a huge, that's a huge one. And so for caretakers, you know, I think it's really important for them to remember that it's it's good for them to put the oxygen mask on themselves first. Like it's really hard for them to be a caretaker if they're not taking care of themselves first. So looking for those places that can give you respite care, the rest respite services, looking for those places that that can give you a breather, because self-care is so incredibly important for the long haul of taking care of somebody with persistent need.

17:46 Michael Mackniak: I I think that that leads me to a question that's sort of twofold. I mean, I think that we're afraid, not afraid, embarrassed, ashamed to say that we're grieving while we're grieving, you know, while we're caregiving and while we're feeling this resentment, we're ashamed to say that we call it everything but grief, right? We call it everything but our our I don't want to call it depression, but you know what I'm getting at. Yeah, we're burned out, we're stressed, I've got compassion fatigue. We we say all that, all those wonderful things.

18:20 Michael Mackniak: Why do we well number one? Why are we so afraid to call it grief and admit that we're grieving? And number two, I know that we didn't talk about this prior or anything like that, but why is it so hard for us to give ourselves respite and ask somebody for help? And is that just human nature? What's that all about?

18:42 Dr. Joanne Schaefer: I think it's a little bit of human nature, but once you're in when you're in a caretaking role, you tend to take on a lot of things. And I think it's just important to remind caretakers that it's okay to ask for help, particularly if there are caretakers that were already in a caretaker role as a job, and then they're in a caretaker role with a family member. I think it's doubly difficult. Oh, sure. So if they were a nurse physician, you know, some sort of caretaker role and as their profession, and then they're doing this, they feel doubly responsible that they can't ask for help.

19:25 Dr. Joanne Schaefer: And it's it's vitally important that they that they learn to ask for help. They learn to accept the offers of help. Um, this came up in my interviews as well, that they wish they would have taken offers of help sooner.

19:41 Michael Mackniak: Well, and one of the things that I've I tell people when I when I talk and write or whatever is there's a lot of people that are waiting in the wings that are willing to help you. A lot of people just don't know how to offer without being awkward about it, and they don't want to impose. And you talk about that, we're gonna get into some of that later, the inquisitions and some of the stupid things that people say. But and and I think that we forget that most of the people in this world, uh not all, but most of the people in this world do like to help other people, and they are willing to help it.

20:18 Michael Mackniak: And and sometimes it's just a matter of raising your hand and asking, and that's really important. That's I mean, a lot of times on this on this podcast, I point out a lot of the problems that are we that we face in this caregiving and mental health space, especially, and problems with the system. And I say point blank, I don't have all the answers, but the answer that I can tell you is that you're not alone, that this is this is not an anomaly. If you're hearing this, you're you're not alone. Here, jumping right out of the right out of the shoot, you're offering people some great solutions and some piece and some grace, back to your your word, that I'm really thankful for because that's that's not always easy to come by.

21:00 Michael Mackniak: And you've done the research and you have talked to enough people to have some answers. So that's huge. So here's a here's a here's one for you. Uh what do they do? What do caregivers do when they're it's at 3 a.m. You're what laying awake like most of us at between two and four in the morning at some point we're awake, laying there, and that person, and I and it makes me so sad what you just said about medical professionals feeling the double burden. But what is what do you do with those folks when they're feeling trapped and they feel somewhat resentful?

21:34 Michael Mackniak: And on some level, they're wishing for an end to it all. Uh, be it be and again, I'm wishing that this could end and someone would get better. I wish it would just end and they could pass away. That's gotta be some really hard. Uh and I and how do I admit that to myself and and to anybody else?

21:53 Dr. Joanne Schaefer: Yeah, well, I I think you know, the first healthy thing I think that people can do is admit. Those feelings to themselves and journal it out if they can get up, especially if they're staying awake at night. You know, good research shows that journaling stuff out is really helpful. And and if they're having those thoughts, I mean I cannot strongly recommend enough getting into counseling for themselves. And I know people are going to say, gosh, I'm I already have nine million things to do a day. I don't have any time.

22:25 Dr. Joanne Schaefer: This is one of those vital things where you will feel better if you talk to somebody. Even if you can get a telecounseling appointment in and talk to someone via Zoom, there are counselors that do that. So it can fit in. It takes some of the, you know, drive time away to and from. If you can just get an appointment where you can do it over Zoom privately in another room, so you can get some relief. So I would really lean heavily on getting some help for your own personal feelings and get some personal support like that.

22:59 Dr. Joanne Schaefer: But to go further with, we know when you're really feeling burdened, you know, so often what's keeping people up in the middle of the night is how am I going to get all this stuff done? You know, we have that, you wake up because you forgot about something that has to be done, or your your anticipatory anxiety about all the things you have to do the next day. Well, start a list. If you can't sleep, if you lay in bed for more than 15 minutes and you can't sleep, the studies say you should get up, start writing that list, or try to do something just to get it off of your brain, and then try to do something relaxing and go back to bed.

23:36 Michael Mackniak: Yeah, and the very act of doing that is cathartic and you are in in action. That's where my career journal comes in.

23:46 Dr. Joanne Schaefer: Yes. And and I take it a step further with your caregiver journal. When you write that list of the things you have to do, put it in the form of a question like who can help me do this? Like change the filters in the furnace, who can mow my lawn, who can run to the store and get me the basic breads, egg, bread, eggs, milk, vegetables. Who can, you know, I have a conflict with work with the next appointment? Who can take this care journal to the next appointment for so and so? Start putting all of those into questions.

24:23 Dr. Joanne Schaefer: And then when it's light out the next day, start to make good on that list. And, you know, there's been probably people in your life that say, I want to help, I don't know how to help. This is the time to ask them, hey, I really need my lawn mode. Could you mow my lawn for me? Or I, you know, could you just give me a day to come over and help me catch up on laundry? Or whatever, whatever the thing is. But like you said, most people want to help. Helping other people is a great thing for their own mental health.

24:58 Dr. Joanne Schaefer: It's been shown the more when you help somebody else, you get a wonderful boost of neurochemicals in your own brain that are good for you. So when people can help you, it's good for them and it's good for you. So don't be afraid to ask for that help, especially if someone's been looking for a way to help you. If you can be specific. In the book, I talk about ways that, you know, sometimes, you know, when you're grieving, you can't come up with that list. So I advise people who are supporting people who are grieving, think about the things you can offer to someone who's grieving and just say, hey, can I run to the store for you?

25:34 Dr. Joanne Schaefer: Hey, this applies in this situation too. If you know a caregiver that's overburdened, ask them. Can I come over and do a dance worth of laundry for you? Can I come over and dust vacuum your house? Can I what what things are available for me to just do one-offs? Can I move your lawn? If you see the plants on the porch are are getting really dry, go over and water them. You can do some of these simple things for people without them having to ask.

26:00 Michael Mackniak: Yeah, and that just means so much. It really does. And it I love what you said about the Zoom meetings and taking the half hour to the to the office and the half hour back. There's an hour of your day right there. You know, in the world of technology, use it if you if you have to and if you can. What is the what is the benefit to the caregiver in acknowledging that okay, this is not me just being pissed off and resentful. This is me going through grief. What is what is what's the benefit of naming it and identifying it as such and and being moving moving on with it and taking it with you where you go, but it's you know, bringing it along up for the ride.

26:47 Dr. Joanne Schaefer: Again, this is a great one backed up in science. There's it labeling your emotions is very helpful. So whatever you're feeling at the moment, if you know, sometimes repressing what you feel is not helpful for you. In fact, it's never helpful for you. But if you have these feelings, naming them, acknowledging it. I always explain to folks that I coach, like take that feeling, put it out on the table, acknowledge it, look at it, study it. There, you know, the more you explore into it, it's it can't harm you more.

27:20 Dr. Joanne Schaefer: Repressing it, keeping it in is worse for your health. It's worse for your heart, it's worse for your brain, it's worse for your blood pressure, and which affects both your heart and brain. So, yeah, label that emotion, get it out of you and say, why am I feeling that way? And and and it's okay. I'm feeling that way because I've been dealing with this for a long time. I'm grieving the loss of a normal, healthy person than I quote unquote normal, healthy person. Uh and I really wanted that for my child, for my spouse.

27:54 Dr. Joanne Schaefer: And I didn't get that. And so this is what I have, and it's hard and it's unrelenting and it's not pleasant, and I don't like it, and I I am resentful over it, and I do feel guilty for being feeling that way, but and I feel that way, and so there, it's out on the table.

28:17 Michael Mackniak: I love what you said though, because I can't feel any worse. I may as well just acknowledge it. And you know, I'm playing with house money at this point, I can't feel any worse. I might as well acknowledge it, call it what it is, and and we'll move on from there.

28:28 Dr. Joanne Schaefer: Exactly. But the research shows by acknowledging it and getting it out, you actually do yourself a little good.

28:37 Michael Mackniak: Right. I I'm sure, I'm sure. Now you you talk in your book about the various types of grief, you talk about the various ways that people start, you know, reasons that people grieve. And again, we're talking about loss in particular in the book, but the overarching theme for all of it is that obviously it's a deeply personal experience for everybody. And some people are going to be approachable about it, some are not going to be approachable about it. And some people in in in some instances we get uh afraid, like afraid to reach out to a person that we know is in abject grief.

29:23 Michael Mackniak: And um we talked about when you say complex grief, that's the same thing as complicated grief. And yeah, definitely, yeah. So if they're going through this complex, ongoing grief, and we know it, you know. I say one a woman said to me one time, it was so heartbreaking. She's like, My kid got diagnosed with schizophrenia. Nobody brought a cake over to my house. You know, when my when my dad died, people brought a cake over. Or when my mom was in the hospital, people were bringing over a casserole for for the family.

29:53 Michael Mackniak: My kid gets diagnosed with schizophrenia, nobody made me a cake. And it's like, you know, that's so true. When should we stop being silent and and reach out to folks? Is there a right time? Is there a good answer to that question? Am I asking it right, even?

30:11 Dr. Joanne Schaefer: Yeah, no, I think I think, listen, these are hot, these are hard topics, and we still haven't even, as a society, gotten over the stigma of mental health illness to begin with, right?

30:20 Michael Mackniak: So I don't know how we will, honestly.

30:23 Dr. Joanne Schaefer: Well, it starts with us, right? And I I tell people all the time, listen, you know, mental health, mental health diseases are a disease of the brain, and I think of them no differently than the disease of like the pancreas, which would be diabetes. They require, they both require medications. When medications are not given, things go awry. And and so, and it takes a while sometimes to find the right medication, the right doses, and to get things, you know, under control so people can lead semi-normal life.

30:58 Michael Mackniak: And so coming from a physician, that's that's awesome because it it affirms what I've been saying. It's like again, another woman said to me, I wish my I wish my son had gotten diagnosed with cancer, because at least people can understand that. They don't understand bipolar disorder, right?

31:17 Dr. Joanne Schaefer: It's getting better, but we have we have a long way to go. And ending the stigma with mental health is is just it like I said, it is getting better, and it's just gonna continue to take time. I think about how it used to be when I was training, it's a lot better than it used to be 30 years ago.

31:41 Michael Mackniak: I mean, I've been in I've been in this gig for 25 years doing running this nonprofit agency, and I'll tell you, when I first started, I had this grandiose idea of what we were doing, and nobody knew what the hell I was talking about. Yeah, and now I go to you know, I go places and it's almost it's very well accepted, it's very commonplace, and people are right in lockstep with me now. And that's 25 years, like you're saying, 30 years. So it has gotten a lot better. The the conversation isn't completely out of left field anymore.

32:15 Dr. Joanne Schaefer: Right. And you have well-known celebrities who are speaking out about their own experiences with bipolar disorder, anxiety disorder, depression, and major depression. And so, you know, that lends a nice, credible ear to it as well in the public eye, so people can see hey, this is real. It impacts a lot of people. And, you know, they they have shared what their families have gone through and what they've experienced. And so, you know, I think that will only continue to get better because they're pulling the curtains wide open and letting society see as celebrities how they've had to experience this.

32:55 Dr. Joanne Schaefer: And so I think that will help. That'll continue to help. Legislation has changed, policies have changed, federal regulations have changed, pair, you know, responses have changed. So it is getting better. We have a long way to go. But but I think it it is getting better. And meanwhile, whenever I see someone bravely speak out and share their stories, I'm just like kudos to them. Because, you know, I think about when you know Betty Ford talked about her alcoholism. When I think about, oh gosh, I think she was the one who spoke first about her breast cancer too.

33:33 Dr. Joanne Schaefer: And that was taboo. We wouldn't talk about breast cancer before that. So you know, I think, you know, we've come, you know, we now we share everything on Facebook. So, you know, yeah. I mean, so I think that's great. And I think it will continue to improve, but just demystifying and talking about what it means to have a diagnosis and what the medications mean, I consider it no different than any other medical diagnosis that you would have. The fact that it involves the brain, I mean, to me, why do we consider a seizure disorder different than a bipolar disorder?

34:08 Dr. Joanne Schaefer: They're also they're both brain dysfunctions. And so, you know, they both require medications, medication tuning levels. It's just, you know, how did that get split in the brain way back when when we decided to do medical coding and billing?

34:24 Michael Mackniak: So don't even let's not even go down the road.

34:26 Dr. Joanne Schaefer: I know we won't coding and building.

34:33 Michael Mackniak: I want to get I want to get into this because this is I think this will be fun. Well, it will be for me listening, and I think you probably have fun with it too. I want to get into the words and action stuff that you talk about in your book.

34:44 Dr. Joanne Schaefer: Sure.

34:44 Michael Mackniak: Good list and the bad list, and then I paraphrased for you what I call the golden rule. We'll save that one for last. I'll say you know, I'll say it if you don't want to say it, but so let's talk about let's talk about the bad list first. What are some bad things that that your interviewee said? This was the worst when people said this to me, and I I just want to don't want to hear it ever again. What are some of the not to say in these situations?

35:10 Dr. Joanne Schaefer: Well, I mean, the the first thing that the number one across like all the interviews was like people just didn't really like it when you said, Let me know what I can do for you. Let me know what how I can help, because it's putting the burden on them when they're already really burdened with a lot of things to do, especially like planning funerals, uh bringing in the college kids or you know, taking care of the little kids, bringing in the parents, everybody coming in for the funeral. They're they're a mass logistic person at that time, like logistician.

35:41 Dr. Joanne Schaefer: Anyway, they're busy and they don't want to be trying to figure out what you can do to help them. So this gets back to what I said before. Take note of what might appear that they need to get done, even things like washing their car for them so they have a clean car the day of the funeral. Little simple task, but all you have to do is say, Hey, can I run to the store for you? Do you need this? And they can say yes or no to that. And, you know, just simple tasks. Ask if you can do them or just do them.

36:14 Dr. Joanne Schaefer: You see the lawn is getting too long, mow their lawn for them. They're having a lot of people coming over. This gets to, you know, setting up the meal trains. Well, that's on the helpful list, but I can talk about that more later. One of the things that was even in really religious, and I talked to very devout Catholics, devout Muslims, devout, very, very devout religious people. And they said, even when members of their church came up to them and said they're in a better place, or he's with God now, they really didn't want to hear that.

36:50 Dr. Joanne Schaefer: A mother of a of a deceased child said that to me the most. They said they just immediately felt anger towards that person, said, you know, the best place for my son is in my arms. Don't tell me he's in a better place. You just gave me this bumps. Oh yeah. She said, you know, I know that they weren't trying to be mean, but it's just even as a devout person, I didn't want somebody to just indiscriminately use their faith in my situation, even though they know me to be a person of faith. So I just caution people like, be careful how you use those.

37:26 Dr. Joanne Schaefer: Wait for the person to say it to you first, and then you can agree and you can support them. If they ask for prayers, send them, give them. But just be careful with those because they can be deeply painful for people. They don't want to think of their loved one gone yet, and so it can just be so raw.

37:45 Michael Mackniak: True, true. So I really I really like the idea that you put it, you know. I'm I'm caring for my father, or my father just passed, whichever way it may be. I got so much on my plate. My world is coming down around me, it seems to me. Don't make me have to be the general contractor of my own life, too. Yes, I I don't know what the hell I need right now. You come up with something that I need, you know what I need. Come in here with an idea. I love that. So specific tasks. You point that out, you point that out in your book, and I thought that was wonderful because it really does take that onus off of the person that we're trying to take the onus off of.

38:27 Dr. Joanne Schaefer: Yeah, and they don't they're not even thinking of those things, like you know, like like if they have dogs, hey, can I take your dogs for a walk? Oh my gosh, they haven't been walked. Oh yes, or does your dog need some dog food? Let me come in your garage, I'll see what they can. I'll get I'll pick up some dog food. Oh my gosh, I'm gonna be out soon. Yes, thank you.

38:46 Michael Mackniak: You know, that ambiguity, the ambiguity is just an added burden that they just don't need. All right, so all right, so the bad list is always the best, I mean, or the most fun anyway. So, what are some of the good the good things? Uh obviously, I'm gonna make a suggestion of things that we can do for you that are specific, so be specific. Go ahead.

39:07 Dr. Joanne Schaefer: I think one of the most helpful things people really appreciated were the text from everybody. Oh, yeah, not not expecting, not expecting a response, but just sending a text. I'm so very sorry. I'm thinking of you, deepest condolences. I I have no words other than I'm so very sorry. And I should say the number one thing is food. People appreciate food. Uh, they have a lot of out-of-town visitors, people dropping by unexpectedly, and for all the right reasons, like people close to the family, out of town.

39:42 Dr. Joanne Schaefer: So coffee cakes, casseroles, things like that. Both, you know, like of course, some people appreciate the bottles of wine, but uh people also appreciate non-alcoholic beverages, you know, because you got children coming over too. And, you know, meal trains are set up, and that is extremely helpful for families. And you can do it non-invasively by putting an ice chest outside the front door of the house so that every every evening at four o'clock, you know, a meal is delivered. But you but don't forget about the pets and if they need cat litter and don't, you know, like little extra things that can go a long way for for the rest of the family.

40:22 Michael Mackniak: Um, and one of the things that strikes me is when, for instance, a friend of mine was diagnosed with like stage four breast cancer, young, she's young. And first of all, she's not in good health to begin with, and she abuses her body with not good things. And we all rallied around her and and her husband right at the outset of you know of the diagnosis. And this and there was another situation that I took pause and I said, you know, when they're really gonna need us is six months down the road from now, a year down the road from now.

41:05 Michael Mackniak: So this is all wonderful that we rally, but let's set up that food chain, let's set up a plan of action of who's gonna check in on you know, this is your month, here's your month, here's your month. I think that is really important. A friend of mine was in a in a snowmobile accident, and uh she's lucky to be alive, but she's uh she has brain damage, she's got a traumatic brain injury, and uh just not the same person. And we all were grieving and grieving and grieving, crying in our beers when it happened, and and I was just like, man, we need to make sure we have the same level of empathy and concern a year from now, two years from now, three years from now, because she's young, she's gonna live for a long time.

41:49 Dr. Joanne Schaefer: Yeah, no, you brought up one of the things I talk about in the book is I lovingly call the immediate after the event people the flower people. And I've been a flower person too. We show up with a flower of all the support, yep, because we didn't know. And a part of the biggest reason why I wrote this book is to make us all better human beings, have more empathy and have more understanding about what it's like to step inside the shoes of someone who's lost a loved one in different circumstances. So you want to do better longer so you can be there for the immediate event, but remember the year of first that the family has to go through after the loss of a loved one, but it applies to an event as well.

42:35 Dr. Joanne Schaefer: So, you know, one of the tips I give in the book is you know, at a funeral, you have the birth and death date right there. So snap a picture of it on your phone, or when you're a lot of awkward waiting time at a funeral, type it right into your phone, the calendar of the birth date of the person who you thought uh whose funeral you're at. So you remember to send a text on the date of their birthday to the loved ones saying, I'm thinking of you this day. It might be a hard day, but just know I'm thinking of you.

43:06 Michael Mackniak: That's actually pretty great advice. Yeah.

43:08 Dr. Joanne Schaefer: That means so much to people. I can't even tell you because most people will never remember to do that. And then the year of the date of the funeral, too, because they buried them that day or the date of the death, you know. And then you just put a little tickler remind you, reminder around Thanksgiving, around Christmas, or around, you know, any of the religious holidays they practice, because the family really appreciates that that you're still thinking of them and their lost during that year of the first.

43:37 Michael Mackniak: Yeah, and again, we talked about ongoing grief, and grief doesn't it, you know, we we have to accept it, we have to carry it with us, but it it also doesn't have to define us. Correct. Correct.

43:50 Dr. Joanne Schaefer: Correct.

43:51 Michael Mackniak: It doesn't matter. That kind of brings me to my to my final point without me even trying. So kudos to me. It doesn't define us, but in your book, you actually talk about some of the things that grief helps you to do to better it makes us better in the end on some levels. It's like we have we never knew we had these muffled muscles that we needed to work out, and we're flexing these muscles, and we didn't even know we needed these muscles, but now here they are. And you talked about a few different things that people identified as being really interesting to me.

44:27 Michael Mackniak: And I think it really a couple of them really go to families who are helping to advocate and navigate loved ones through chronic illnesses, mental illnesses, et cetera. So can you just talk about those quickly?

44:41 Dr. Joanne Schaefer: Yeah, yeah. So one of the questions I asked everybody that I interviewed was you know, you've been through this incredibly traumatic loss, and it no, no doubt impacted your life. Without being, you know, cheesy in the way I asked this question, like making lemonade out of lemons, I want you to reflect back and see if there's anything positive that you got out of this loss that you would like to share. And some of these I already knew because they started a foundation. They created scholarships for people out of a foundation.

45:17 Dr. Joanne Schaefer: Some of them changed the law. Some of them had, you know, safety issues identified and changed the law with consumers.

45:26 Michael Mackniak: You talk about that in your book too. Yeah.

45:28 Dr. Joanne Schaefer: Yeah. Some of them, and then and then some of them were more about themselves personally. Like one left a job that wasn't was very financially fulfilling, but not fulfilling in her soul. And she said, you know what? I walked away from that. I was chasing a different definition of what success meant. And she said, that was the best change I made. And had I not gone through this tragic event, I don't know if I would have thought the same. And so now I'm doing something that I absolutely love and I'm not making as much money, but I'm really, really happy and fulfilled.

46:04 Dr. Joanne Schaefer: And then another person said, you know, I thought I was a great boss. I thought I was a great CEO. And I figured out that I really wasn't very empathetic until I lost my son. And then I realized I grew so much, and now I'm far more engaged with my employees. I'm way more empathetic. And I handle loss so much differently. And I'm a much better person now. So the combination of doing more meaningful work, making their loved ones loss not a statistic, helping others, being a better person, gaining more empathy, people really were impacted by their loss in many good ways.

46:50 Michael Mackniak: Yeah, I was impressed, and it really resonated with me about the leadership aspect of it, the advocacy, efficient task manager, I think you put in there as one of them. And a deeper empath is one that you certainly and you said that it's I think you you said it's because of the loss that they they they credit the loss as it's as opposed to saying in spite of it. No, it's not in spite of it. It's because of it. I be I gain these new characteristics. And I really thought that that was powerful and important.

47:21 Michael Mackniak: So yeah. Well, you know, I say kudos to all those folks that participated in how many people did you interview?

47:28 Dr. Joanne Schaefer: Oh, many. You know, I've never counted them all up.

47:34 Michael Mackniak: Really? Yeah, a lot.

47:36 Dr. Joanne Schaefer: Somewhere around a hundred, I think.

47:38 Michael Mackniak: Wow, yeah. And and was the conversation close on the heels of the loss or removed from it, or combination of both?

47:47 Dr. Joanne Schaefer: Almost all were removed.

47:49 Michael Mackniak: Really?

47:50 Dr. Joanne Schaefer: Very few were fresh. Because you know, I didn't I when somebody would refer me to someone, this is how this happened too. I had a lot of interviews, and then they would they would refer me to someone else I should talk to, and they should they would refer me and and so on and so on.

48:08 Michael Mackniak: Domino effect, yeah.

48:09 Dr. Joanne Schaefer: When it was a fresh loss, I would give them every out possible because it was so fresh. And many took that, you know.

48:19 Michael Mackniak: You wrote about I think you put that in the intro of your book as well. It was at the very beginning, I believe. You talked you and I talked about it when we were talking about your book.

48:28 Dr. Joanne Schaefer: Yeah, I think it I didn't think I put that in the book. Um, and then some people were like, I want to be absolutely anonymous, no credits, no nothing. And they just spoke from the heart, and and I thank them very much. And it was a beautiful conversation.

48:43 Michael Mackniak: But they thanks to all of you people who have have participated to this study and to this book, and to help this great lady, this great physician, to shed light for all of us on this really important topic and help us uh understand that it's something we're all gonna go through. So thanks again, Joanne, for helping me tell show everybody your show everybody your book again because it's got a cool cover. I like it. The unspoken side of grief, the truth about loss, healing and how to support someone grieving with Joanne Schaefer, MD.

49:14 Michael Mackniak: Yeah, yeah, great. You're a great personality, you're a great person, you're doing really, really cool work and talking. Talk about it with the passion that you write about, which is impressive.

49:26 Dr. Joanne Schaefer: So thank you. You're doing great work too.

49:29 Michael Mackniak: I thank you for helping me to do that. This is all part of that. Oh, you're very I hope to see you when we go overseas for our next adventure.

49:39 Dr. Joanne Schaefer: I hope so. I haven't decided yet.

49:43 Michael Mackniak: Yeah, no, I haven't either. Anyway, yeah, I talked to talked to them yesterday and they're like putting the heavy push on, you know, the sales pitch. And I'm just like, yeah, I'm not I'm not giving you this right now. I'm too fresh off of the other one. I'm still not altogether happy with the outcome and the uh and the way that it was all put together. So maybe in it, maybe in a couple months if I start seeing some residuals from it, maybe we'll maybe I'll have a better feeling.

50:09 Dr. Joanne Schaefer: Yeah, I think they definitely need to get more organized. I'm assuming you will cut the zoom. Oh, yeah, yeah, yeah.

50:17 Michael Mackniak: Yeah, we're not here.

50:18 Dr. Joanne Schaefer: I'll even say that. Yeah, yeah, yeah.