← Leading Organizations That Matter
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- [00:00]
A
Foreign. Welcome to Leading Organizations that Matter, a podcast about leadership and how we find impact, meaning and joy in our work. I'm Ray Spadoni and today's topic is When a Loved One Is Dying, an interview with author Maureen Grant. This is an episode about a topic that cuts right to the heart of an often frightening and deeply sacred topic, how to accompany a loved one who is dying. I recommend a listen as I speak to Maureen Grodin, who has written a book called When a Loved One Is Conversations about Care, Connection and Coping, as this is a subject best prepared for in advance and when you are not in the throes of it. Hi Maureen, thank you for being with me here on Leading Organizations that Matter. First of all, would you tell our listeners a bit about yourself and your background and then why this topic?
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B
Well, first of all, thank you very much for having me. I really am looking forward to this discussion. And also congratulations on your third season and over 100 podcasts. That's an incredible achievement.
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A
Thank you.
- [01:29]
B
So I've been a nurse for over 40 years now. I've been in end of life care for almost 30, and it was very, very important to me to educate the public about what happens when somebody has a serious illness or an end of life disease. So as I would educate people about end of life care, new staff, so forth, I would tell the same stories about Ray and the difficulty with symptom management or Stanley about the difficulty with when to come on to hospice, that sort of thing. So I decided to write a book of stories of people I've cared for and the lessons that I learned from them.
- [02:10]
A
Great. So the topic and what you've written about is something that many of us would just assume, not think about, let alone plan for, and that is the death of a loved one. So for anyone who is starting to listen to this particular episode and thinks to themselves, you know what? I'd rather listen to a podcast about something else, anything else. What do you have to say to them?
- [02:40]
B
Well, I feel really strongly that if people are willing to just learn a little bit about the process, they're actually going to have a better experience when the time comes. So, I mean, just learning a little bit about what to expect, how the healthcare system works when someone has a serious illness. There's so much physical and emotional and sometimes spiritual worry when somebody is sick or dying that it's not the time to learn about how the system works and about what you're going to now experience. So I just encourage people to try very hard to learn a Little bit more about where the services are. What does palliative care mean? What does hospice care mean? When is somebody likely in the last six months of life? You know, there are predictors of all of this. And so I just encourage people to try very hard, in spite of how sad or how sensitive it be, to try to learn a little bit more about what is inevitably going to happen.
- [03:46]
A
Is that what really prompted you to write the book? Because you have many years of professional experience and some personal experiences, but why a book?
- [03:59]
B
Well, I really feel that. I really feel that by storytelling, it makes the information a little bit more accessible. I mean, I've been in nursing education off and on throughout my career. I've done a lot of education of nurses and social workers and liaisons in healthcare facilities about the importance of hospice and when are people eligible and what's included in the benefit and a lot of other education within the system. And I really feel strongly that people in the public are the people that I want to educate. I just feel that it's. It's going to be more successful. I think I believe in a consumer sort of driven need or desire. You know, I really feel like the current generation, you know, change birthing in our country with, you know, people, you know, partners being in emergency rooms and Lamaze and reducing cesarean section and all of that. And I really feel like right now there's a tremendous interest in having some control or direction of your own end of life experience. There's a lot of focus on death doulas and death cafes and green burials and voluntary stopping of eating and drinking and medical aid and dying. And so I think people really have an interest in this whole area and want to be able to exert some control over how their end of life experience goes. So I wanted to contribute to that education around what is it like to care for somebody? What does hospice mean? I really think if you can push beyond the discomfort and, you know, the potential sadness of the topic, I really do think the knowledge will help you to have a better experience. I also think that there's a lot of misconceptions about hospice and end of life care. There's a lot of things that people come to understand about it that's not actually accurate. And so I also hope that some people that may have had an experience with a loved one that they. That bothers them for the rest of their life, that they still sort of feel sad about, that they may look at it just a little bit differently. For example, you know, it's really common that People often die when people leave the bedside. You know, that is a very common experience. And I don't know exactly why it happens, but I do know it happens a lot. So I just hope that through the stories that I've told that people will learn more about an important topic and perhaps maybe look at an experience they've had and maybe look at it a little bit differently.
- [06:38]
A
Well, I need to say that it's really an excellent book that you've written, Marin. And I've. I've read a few different books on this topic, you know, some of which approach it, I think maybe more from an academic perspective. This is not that, though. It is chock full of a lot of information, makes the topic very accessible. And I would say that it's very beautifully written. It's going to tug at your heartstrings if. If anyone reads this book, definitely going to target their heartstrings, partly because it's, you know, it's going to invoke memories that we now have from our own experiences, and that will be emotional. But really, the vignettes that you've provided right from the get go, you talk about Alice and her family, and there's just a very simple scene of one of the daughters who has come traveled from out of town to spend time with a dying mom, Alice. And in your story, you describe the fact that she went for a walk, a riverwalk or something near where the parents live in their. In their. In their community. And I highlighted this sentence, which was, as she walks back into the house, it feels like it's wrapped up in warmth, stillness, and sorrow. And I don't know, that just really hit me because I think for anyone who has accompanied someone, a loved one who's dying, to have that moment of respite where you can step out into the world and, you know, get some. Get some breathing space and a little bit of a break. It's the stepping back in to a very sacred but a very, very difficult place. And I just was struck by how accessible your writing is and the fact that the stories you've told are ones that are so relatable. And I think the way you've written it, it's just very, very moving.
- [08:55]
B
Oh, thank you very much. I really appreciate that. The. The first story is about Alice, and the title of the chapter is called I Can't Believe this is Happening. As I'm writing this, one of my very good friends contacted me and said that her husband, who had just been diagnosed with lung cancer, she said to me, I can't believe this is happening. And I think that's just something that we have to come to understand that oftentimes it's literally a phone call, a doctor's appointment, that oftentimes our life is shocked into reality about the possibility of somebody that we love dearly is. Has a serious or end of life disease. So it was someone intentional to have the chapter, start the book, start with that particular chapter. Nobody in my entire career reminded me more of my mother than Alice, that particular woman in the story. And, yeah, I'm just hoping that people can read about it and hear about the decisions that the family made about whether or not to have treatment when she was diagnosed with stage 4 pancreatic cancer and had already metastasized, and that decision about whether to do anything about it. And then also how she reacted to each of her three children who were very different, and her spouse as well. And then just the process of meeting with a hospice person and having it be the focus not on the diagnosis so much as who are you as a person? Alice, tell me a little bit about yourself. And then the caregiving part with the family coming together and taking turns and that sort of thing. So I'm hoping that people get a good sense of what families experience while they go through this very difficult experience.
- [10:56]
A
Well, on the topic of family, there's another story, and you already referred to Ray earlier up front, unless anyone think that's me, because my name is Ray, this is a different Ray. But you talk about Ray and his daughter Allison, and, you know, it's. It sort of showcases the fact that families are complicated and that personal history and context are important factors in how the dying process can actually unfold. Can you. Can you speak to your experience with that?
- [11:33]
B
Well, that particular chapter was, you know, a real life family I cared for. And in this particular case, just to provide a little bit wider context, this was a daughter who had. She and her brother had experienced the divorce of her. Their parents and the father had difficulties and had been, you know, estranged to some degree with her. And she had a fairly close relationship with the mother. And then her mother died suddenly. So then she found herself literally being called in to care for her dad. And in this particular chapter, what I experience as a hospice manager, director and clinician is that in this case, this person was in the hospital, was diagnosed with colon cancer, was clear as much as they could be, given the family dynamics, that they weren't going to get any more chemo. They just wanted to go out of the hospital. They were not interested in what oncology had to offer. He was sort of a no nonsense kind of a guy. And yet the referral from the hospital was for VNA services, not hospice services. So the whole setup was a whole different, you know, rehab sort of thing. And so basically we walked into a severe symptom management situation. And the actual title of the chapter is called Dealing with the crisis of pain. But from the sake of the. For the focus on the family. You know, families are complicated. You know, there's estrangement, there's alliances, there's history, there's a lot of emotion, there's a lot of tenderness. My experience throughout a very long career is that in spite of trauma and in spite of difficulties with addictions and estrangements and so forth, I am. It's amazing to me what families will do for each other. It's absolutely amazing to me what families will do for each other. So in spite of a lot of past difficulties, and I consistently see families who love each other, I consistently see families who take care of each other. And I think part of it is, and I've thought about this a lot, you know, hospice doesn't come in and try to sort out long standing histories of difficulties. We just try to hold people up as they go through a very difficult experience. And what I've come to realize is that for most families, when we ask people, and we ask people all the time, how do you want this to go? What are your goals? What's most important to you? Because when you ask people those questions, which most people don't, you actually will get an answer. They'll say something like, I just want to be home. I just want to be comfortable. Sometimes people will say, I want to go to the beach again. A surprising number of people say, I want to go fishing again. But the point is, it's not hard to get behind what people want. You know, like even family members that might not get along or there's been a lot of history of difficult. You know, most people want their loved one to not suffer. Most people want their loved one to be comfortable and to be clean and to be peaceful. So I just find that regardless of family difficulties, it's not be hard to get behind what most people want at the end of their life.
- [15:16]
A
Well, you mentioned your mom. And so I wonder if you wouldn't mind commenting on how your own personal experience of loss shaped the. The way you approached the writing.
- [15:32]
B
Right. Well, I had experiences with my. Both my mom, my dad, and also I grew up in a large Irish family, so we Actually had somebody who came in and lived with us and took care of us, who was a very special person in my life and also was like a second mom to me. And so I had. I've had those three very significant experiences and they were very, very different. In my mom's chapter, I mean, I was grateful. I mean, my mom lived to be like 95 years old. You know, she was a nurse herself. She worked for 20 years at a state school and then helped getting people into the community in the 70s when people were being deinstitutionalized. My mom was a, you know, person of high standards and organized and was a just a pretty amazing person. And she lived many years after my dad died. My dad died in the hospital after they removed a respirator in the intensive care unit. So for my mom, the title of my mom's chapter is called Good Days and Bad Days. Because most people that are well into their 80s, 90s and even hundreds, they have good days and bad days. So part of that is to just let people know that if at all possible, try to explore what makes a good day and how do you make more good days if possible. And if your life is entirely about medical appointments and medical interventions, then, and if that's not enjoyable to you, as that experience is for so many people in our country, then maybe having a little bit different perspective on the last couple years of your life is important to have. My mother also called a family meeting and informed all of us that she had decided to sign a do not resuscitate form. And I had advanced knowledge of this because my sister and I were her healthcare proxies. But nonetheless she had sort of a front row seat to what my father experienced, which was he was not very happy. And so she just wanted to have some control over her own. So I think that from my mom's situation, I mean, I felt grateful I had, you know, even though she had good days and bad days, there was one day that I referenced in my chapter about her where I was sitting out on the front porch on Mother's Day having a conversation with her about what was the hardest part about being a mom. And one of the patients that I was caring for at that time was choosing to not eat and drink anymore, called voluntary stopping of eating and drinking or V said. And so I had an opportunity to ask her, mom, would you ever consider doing something like that? So, I mean, I had a lot of heart to heart conversations with her. She lived a long time. I felt grateful that all of us had chipped in to help take care of her. So for me, I think that I was very, very grateful for that. And the same thing with the woman that was our nanny. So I will say, though, that as a hospice nurse, when I was approaching the death of Ethel, who was our nanny, she was the one that really, like, turned all the lights on at the right time growing up and knew where everybody was in this busy little household that we had. But when she was dying, I know, I remember very clearly that I was approaching it more from a sort of intellectual standpoint, you know, the symptoms and handling things as I would as a hospice nurse. And I literally was at work, in hospital, at the hospice I was working at. And I literally had a flashing, like, light, like, almost like a silver light. And it was clearly a message to me that it was a. It was a heart pang is what it was. And it was a realization that, no, I have to leave right now and go take care of her. It was a recognition that I needed to feel this more than organize it. So that was important lesson for me at the time.
- [19:44]
A
Well, this is a broad question. Tell me if it's too broad, but how can families support a loved one's sense of dignity and agency in their final days?
- [19:57]
B
Oh, there are so many ways to do that. First and foremost, helping them to be clean, you know, not to be soiled. You know, a lot of people lose the capacity toileting wise. So obviously having someone be clean is incredibly important to dignity. Having privacy is very important. I mean, culturally and religiously, there's a lot of focus on dignity and privacy. So within people's specific culture, to exercise whatever is important to them in terms of privacy. You know, oftentimes hospital beds are set up in living rooms and dining rooms for people that are at the end of their life. So that just makes it a little bit less private than what is typically done. So to always close curtains if people are being cleaned, or to always address people, their presence, that's the other thing I think is really important. Sometimes people at the end of life, I want people to think differently and deeper, perhaps not necessarily differently, but deeper about the value of presence. Because it is not always easy to sit at the bedside of somebody who is not able to communicate usually. And so I think that oftentimes people just want it over. The end of life process means that people move around less, eat less, and sleep more, and their color changes and they lose weight. And that is something that we see oftentimes regardless of what someone's diagnosis is. So I just encourage people to realize that this is part of a normal end of life process. And if you're able to sit with somebody and provide presence to someone who's at. At the end of their life, to think deeply about what is suffering. Is suffering going through the end of life process and the moving around less and sleeping less and eating. I'm sleeping more and eating less. So what is suffering is going through that process in and of itself suffering. I don't always see it that way. And I also see people as being who they are to the end. And I think it's very important, especially with people with dementia. You know, my sister right now is on hospice and she has advanced dementia. Her husband died suddenly of a stroke. So my sister and I are the healthcare proxies to my oldest sister. And when I look at my sister, I see her as the oldest of a pretty strict Irish Catholic family, went to college and became a nurse and went to the Navy. And I never remember living with her. When I visit with my sister now, I see her as exactly that, the person who is not exactly a real huggy kind of a person, but somebody who is very sort of prim and proper like and very. Has very good manners. And she's always been. And to me, I think the caregivers look at her differently in terms of like, what time did she get up and how did she eat and did she have a bath today and does she need to go to the bathroom and things like that. I encourage people to think of people as who they've always been, and I think that can be difficult with someone with dementia. But it's on us to understand how to interact properly with people. You don't ask somebody with dementia, do you know who I am? You don't show pictures and say, do you know who's in this picture? You know, it's important to allow people to be wherever they are and not to try to always reorient them into our world because it only sometimes increases their confusion and agitation. So I think there's a lot that people can do to sort of accept what happens at the end of life and to learn how to care for somebody, how to interact with someone. The value of presence, you know, the truth of the matter is when someone's at the end of life and you're caring for them, you know, soon they're not going to be there anymore. You know, and so if you're able to sit with that, I think that that's very valuable to be able to provide presence to someone as you shepherd them through wherever they go. If you believe in afterlife or spirit world or whatever. But I think that it's a privilege to be able to do that, whether it's on a personal level or professional level.
- [24:40]
A
Well, you know, perhaps on that point or picking up from there. In your book, you speak about the emotional and spiritual landscape of. Of the dying. What patterns have you seen in how people can find meaning and peace at the end of life?
- [25:01]
B
Yeah, I think that's what's often our goal. I think it speaks to the importance of symptom management. If you're in pain, then it's very difficult to deal the emotional piece or even the spiritual piece if you're. If you don't feel like you have closure. And I have had people say things to me like, I have to get to the bank. I have to get the bank. There's sometimes there's financial things, there's legal things. There's sometimes. Sometimes a need to reconcile with some people. Sometimes there's not. You know, sometimes there's a need to say goodbye, and sometimes is not. But I think that people do seem to try to get to a level of peace, and that would mean being clean. A lot of people. People pass from this world die after they've been cleaned. Sometimes it's after they see certain people. Sometimes it's after they get home again after being in the hospital. So I think that there's a. Almost seems like there's some desire towards peace. And it's physical, sometimes it's emotional. And then the spiritual peace I mentioned is a story in my book called Soothing the Soul. And this is a gentleman I took care of. You know, and this is a little bit further back when we primarily. When the veterans were primarily World War II veterans. And World War II veterans would talk a lot about the camaraderie, and they talk a lot about the machinery of the service, but they would not talk so much about their experiences and what they saw and faced and did. And I do think that at the end of life, there is sort of a reckoning that happens. There's a life review, and it might focus on judgment. It might focus on just achieving peace or some sort of a coming to terms with maybe the differences in what they may have done and then what their ideal might be. I'm not really sure. But for veterans, there's a term that's referred to now as moral injury.
- [27:00]
A
Oh, yeah.
- [27:01]
B
And it's attempt to sort of reckon, reconcile maybe some experiences. So for this person in the story that I mentioned, he was incredibly restless and at that particular point, he wasn't able to articulate what he was experiencing. It was just manifest itself as extreme restlessness. And it was incredibly difficult for the family and dangerous and such. And so we attempted to manage it with some medication. And then at that particular time he was raised Catholic priests came out and actually gave him sacrament of the sick, but also reconciliation. And I think that that was almost like a magic wand. I think that getting to some measure of peace, and sometimes that's through music, sometimes it's through energy work like Reiki, sometimes it's from pastoral visits and blessings of some kind. But I do think that there is some desire towards spiritual, emotional and physical peace. Not that everyone necessarily achieves that in their life before death. But I do think that some people do try to get to that place.
- [28:21]
A
Let's talk a bit about the caregivers. And, you know, caregiving can be exhausting and it can be very special and sacred at the same time. Another, you know, probably too, too broad of a question, but I just wonder if you can comment on how families can care for themselves without feeling guilty or selfish in the process.
- [28:47]
B
Well, I'll just start by saying, Ray, that it's incredibly hard. What people often don't realize is that when you sign on to hospice at the end of life, where the benefit is generally a six month or less prognosis, the reality is that people only live on the. Or rather the median is 18 to 21 days. So it's very short, very intense period of time. It's very difficult for the caregiver because the hospice team comes and goes. You know, nurses, social workers, chaplains, home health aid volunteers, if you choose to have those disciplines. But nonetheless, it's very much of a come and go. And the people that come probably stay on average an hour. So the 23 hours of the day are. The care is provided by the family. And it's extremely difficult. It's extremely difficult for people who aren't necessarily raised to provide bedside care, toileting, turning skin care, mouth care, feeding people, that sort of thing. So that in itself is very, very difficult. And the aid service for most hospices is extremely limited to possibly a couple times a week. And then ever since the pandemic, there's been a huge difficulty with having enough caregivers. And it's extremely expensive. The price of private care just jumped up significantly in the last five years. So that physical part is very difficult, and then the emotional part of just reversal of roles and the emotion and the sadness and the anticipated anticipatory grief of losing somebody so near and dear and the flooding of memories of one's life, whether it's mother, father, sibling, sadly, children, is incredibly painful. And then spiritually as well, that difficulty. So it is very difficult. And then to also be in the position, as often families are, where they all of a sudden have to turn into being nurses because the administration of medication, you know, most people, not always, but most people do need some medications at the end of life. You know, if people have cancer, heart disease, lung disease, there's often medication for pain, difficulty breathing, restlessness, constipation. So hospice does as good of a job as they can to set up schedules for when medications are given. But a lot of times it's based on if it's needed. And there is a 24 hour nursing call for people to call, which we encourage families to do. And they often don't do often enough. But it's just a very, very difficult role for people to play. But there's also, in spite of the exhaustion and the 247 nature of it, there's also some, a bit of an exhilaration. There's almost like almost wired sort of hyper vigilance that comes from this kind of caregiving. Because there's a lot. I think it's really related to the amount of devotion and love that is present. And I feel it when I walk into homes. And so I'm hoping that that's, you know, what people are also experiencing when you have siblings come back together after not being together for a while, when you have the kind of care that people can give back to. So it's just a mix of all kinds of emotions and responsibilities and, and so forth. So what people can do in terms of managing this is setting up a calendar, actually. And social workers from hospice help a lot with this, getting a little bit of extra private help if people can afford it. Looking to see what's available in the community for resources, whether it's home delivered meals or transportation or personal care or homemaking, allowing people to help you and being clear about how that help. Because a lot of people want to help, they oftentimes don't know how to help. So to be as clear as you can around, can you go to the store for me and get this? Can you pick up these medications for me? Can you take care of this for me? I think that again, social workers can be very helpful in terms of setting up ways that family members can structure care so that they're not on 24 7. And hospice does have some backup Opportunities. It's part of the hospice benefit. For example, if there is symptoms out of control, there is a GIP benefit, which is called general inpatient, where people can go to primarily hospitals to get periods of instability managed. And then there's also a thing called a respite benefit, where people are eligible for a five night stay, usually in a skilled nursing facility, a nursing home. So if the person has to go by ambulance, then the hospice pays to take the person by ambulance to a nursing home. They stay five nights in a nursing home, and it gives the family five days to either regroup or to do whatever is necessary to make it more of a placement than a temporary thing. So it is hard, though. It's hard because people don't want to leave the situation. So many, many times we would even, even when we encourage people. And that's actually one of the chapters in my book is about Roger. You know, people would say to Roger's wife, while Roger was in the hospital, you know, leave the bedside, go get something to eat, take care of yourself. And you know, she's like, I need to be here. And besides, they're bringing me up a tray every time a meal comes. Like there is a desire to be there. But that's a balance that families have to achieve around being present and at the same time getting enough rest, eating well, trying to get enough sleep, taking your breaks. It's hard. It's very, very hard. There isn't many programs in our healthcare system that actually cover for personal care assistance. So it continues to be the primary obligation of families.
- [35:04]
A
Maureen, can we talk a little bit about anticipatory grief, this notion that the grieving can begin before death occurs? How can individuals and families recognize and even honor that experience?
- [35:23]
B
You know, that's a really, really good question. And it's not an easy thing to happen because anticipatory grieving. And first of all, hospices have bereavement counselors and they also have social workers that can help even before someone dies. But oftentimes, when caregivers are caring for people at the end of life, the anticipatory grieving that happens, it's an important process, but it's laden unfortunately with a little bit of emotional and panic. You know, for example, the scenario that you mentioned where Michelle, when she was caring for her mother Alice, in the first chapter, she. She goes for a walk in the Riverwalk, and while she's out there, she's getting a little bit of respite, but she's also crying. She's crying because she's asking, how is our family going to be without Mom? You know, I'm like the middle child. And mom comes to my defense, what's going to happen when there's no mom anymore? And then also there's another chapter called From Discord to Harmony where there's two daughters caring for their mom. Their mom has dementia. She lives in a nursing home. And the older daughter is very much wants comfort measures only for her mother. And the younger daughter is very much wanting a full speed ahead treatment. I can't believe you're just going to do nothing, you know, and just let her die like this. So they're on very different pages and the younger daughter is asking those very questions also, like, what's going to be like when Mom's not here? It's just me and my sister and we don't get along that great. So I think that people, when they're anticipating the loss, they're trying to start the process of feeling about what life will be, life without this person. They're also trying to reassure that person that I'll take care of dad or I'll take care of Mom. They're also trying to sort out what. What will it be like and what about my children, my grandchildren? How am I going to help my grandchildren without their grandmother? I think that there's a tremendous amount of emotion that comes with that process. And it's all part of, I think, the, you know, getting used to the fact that life is never going to be the same. Yeah. And I think that bereavement services from hospices extend for at least 12 weeks, 12 months, rather after the death of a loved one. And I think that that's an important service that people can continue to access. I think, frankly, a lot of family difficulties come up after people have died. I think that most families hold it together. They take turns. There may be resentments and, you know, the responsible people get more responsible and the irresponsible stay responsible. And there's a lot of tension around who's doing what. But for the most part, they hold things together for the sake of the person that is dying. And unfortunately, whether it's possessions and houses and various decisions that happen, happen after the fact, I think that's when oftentimes families run into difficulties. And that's unfortunately, when the whole complement of the team is not necessarily available to see people through. But at least the bereavement folks are able to make appropriate referrals and help out.
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A
Is there anything you've seen in addition to bereavement services that can help members of a family begin to integrate the loss after death occurs.
- [39:04]
B
Oh, I. I am one of the strongest advocates of ritual and also bereavement groups, so. Bereavement groups. So when my mom died, I did a bereavement group, and I felt okay about how things went with my mom. I was grateful that I happened to be one of the people, the three people at her bedside when she took her last breath. I was one of the few people when my dad died. And same with Ethel, though, our nanny. So I felt really grateful about that. My mom, when she died, you know, she lived a long life, and she kept saying, I feel like I'm just waiting for a catastrophic event. You know, I don't know that at that point, so many of her siblings and friends had died. So her passing was something that, you know, was okay. So when I did a bereavement group, the reason I did the bereavement group was because I wanted to stop my busy life long enough to honor her. You know, we just jump right back into busy lives. And it just didn't feel like I wasn't stopping enough to take the time to talk about her and to process some things and storytelling and so forth. So that was incredibly valuable. So I did a bereavement group that most of them are six to eight weeks long, a week at a time, and you come together with other people. Some of them are focused on parental loss, some of them are spousal loss. But it's a real good opportunity to come together and talk a little bit more about the loss. When my nanny had died, I did a bereavement group, and that was very painful loss for me, even though she was well into her 80s, and she died very peacefully, and she had been a part of our family since before I was born. I did a bereavement writing group, and the writing group was a particular method, what they call the Amherst Writers Group. And I was shocked by what came out. You know, they would give you certain prompts, like, for example, a color or an article of clothing. They'd give you postcards that you would take, and then you would just write, write, write, and not think too much about it, but just write, write, write. And then you would share your writing with others. So what came out was subconscious or sideways or whatever. So it actually encouraged me to explore things on a level that I probably wouldn't do by just talking about it. And so that was an incredibly valuable experience. And I still have those writings that I hope to write them up someday. So I think doing a bereavement group with a skilled facilitator is extremely helpful, especially for a significant loss like a parent or a sibling or a child or a very, very close friend. I just think it helps to process all the emotion, all the change. The other thing is ritual. So I had a woman at one of the book events that I was doing recently come up to me and said, my loved one died during the pandemic. It was absolutely horrible. We only could do window visits. I wasn't able to be there at the bedside. We weren't having. Able to have any. Any services afterwards or whatever. And I asked her, I said, is it too late? You know, do you have an opportunity to have a remembrance gathering? You know, either at, you know, if she's buried or whatever. Do you have an opportunity to create some ritual where you feel like you've provided some kind of a structure to honor your mom? And so I think that anytime there's a ritual, I've just come to learn whether it's. We had a lot of really good services at the hospices I worked at. For example, we had our chaplain, played the guitar, he would sing Somewhere over the Rainbow to people. That was just so incredible. We had a heart harp player, we had bedside singing group, we had pet therapy, we had energy workers and such a lot of people had death doulas. I just came to realize that when a priest, rabbi, minister, a musician came to the bedside and created this ritual where families got a chance to have a moment together. So whether it's before death or after death, where there's an opportunity, opportunity to have a ritual. It's such a wonderful experience for people that sometimes it smooths out the rough spots, sometimes it allows for honoring. I just find that there's lots of opportunities and it's not necessarily too late to try to bring people together for some sense of reverence.
- [44:00]
A
That's great. You mentioned the term death doula. For our listeners who may not know exactly what that is, Would you mind describing what a death doula does?
- [44:12]
B
Yeah, well, that came about when, you know, before that there were birthing doulas. And so it's somebody that you would hire who would come in and really help you organize a lot of the activities of the day. So a woman that I had cared for recently at the daughter had hired a death dueler. And this particular person. And it's a little bit separate from the hospice services. They're more on the day to day activities of making sure that you Know what you need, something you might need at the store or sometimes they help with helping you contact funeral services, that sort of thing. It's more of the day to day assistance and sort of the being with you as you go through this process which like I mentioned, hospice is clinicians that are social workers, nurses, chaplains, physicians that actually help with specific discipline, specific thing. And I think doulers are present with. I'm here to help you with the day to day and whatever it is that you need, I'm going to help you. And they're tremendously supportive people. There are death doula programs. A woman that I met recently is in a death doula program in Vermont right now. And it's just a new sort of role at end of life where that person will help you with a lot of the day to day activities that happen at the end of life.
- [45:44]
A
Great, thank you, thank you for defining that. Let me ask a last question. No, actually second to last question. The, the last question is, is a little off topic to what we've been discussing. And so I'll, I'll leave the suspense there. But the, the. I want to ask you, what are you hoping readers will carry with them long after they finish your book?
- [46:14]
B
Well, you know, it's funny because I would ask people, people would come up to me and they'd say, oh, I read your book and I really found it helpful. And I mean I'm those emails, which is really nice that I learned a lot. You know, a very good friend of mine that I've known for a long time read it. She just had her 80th birthday and she said everybody needs to read this book. I can't believe how much I learned from this book. So, you know, I hope people do understand about it. But I also want people to know that there are things that you can do right now to learn. What is palliative care? How is it different from hospice care? Where can you get palliative care? Who pays for it? Where can you get hospice care? What is exactly hospice care? Who pays for it? Because these questions can be answered now. You can also go to medicare.gov and you can actually look at the quality scores of the various hospices in your area. You can learn about what is involved in caregiving somebody at the end of life. So my website, which is maureengrodin.com has a resource list and all the resources are geared towards the public, but it talks about the importance of everybody age 18 and above having a healthcare proxy. And then there's the website called The Conversation Project, which helps people with the healthcare proxy situation. And then it also talks about some of the palliative care resources like CAPC center to advanced palliative care or getpallativecare.org so I'm kind of hoping that people, you know, learn through these stories, so not find it so scary. I've asked people, did you find the book sad? And they said, no, Very, very touching and heartwarming, but not sad, more informative. So that's exactly what I was hoping. You know, you started off by saying that it's very, you know, it is, you know, I mean, does make you cry. They're sad stories. I think people dying that you love is a sad story. But I'm really hoping that beyond that, people are able to learn some important lessons about future care of people they love.
- [48:35]
A
Wonderful. Thank you, Maureen. I guess maybe the last area that I wanted to touch on, that I described as maybe slightly off topic from what we've been talking about, is you have written a very informative, but also a very beautiful book. That's an interesting combination because you learn a lot, but it is very touching. What was it like to write a book? What did you learn? What surprised you? Do you mind talking a little bit about that?
- [49:07]
B
Yeah. I think when we've met in the past, Ray, we've talked a lot about this because as I've mentioned to you many times before, I've had a couple different management jobs and another interim one. I've read a lot of management books as part of management teams, leaders and organizations. And your book, Leading Organization Saving Organizations that Matter was one of the best ones I've read. So we've talked a lot about the process of writing books. Well, let me just say that I am not a writer by profession. I don't have a degree in English or, you know, creative writing or anything like that. So this whole process was new to me. I wrote these stories. These are the stories that I would educate new staff from hospice. And I would talk about how important it is to be in the right program at the right time or the importance of symptom management and all that. So I would tell these same stories of people. So then I decided to write them up. I would just say in terms of this whole process of writing a book that I would not. I would say, don't let anybody discourage you, because I was told, you know, that it's hard to get an editor. It's hard to get, you know, an agent, it's hard to get a publisher. And I know that all to be true. So I had to learn quite a bit about the whole industry. I had to learn a lot about established publishers versus hybrid publishing versus self publishing, all of that. So for me, it was a very positive experience. I got an opportunity to have some very good editors. I'm very fortunate that I have a wonderful agent, and I've had a very positive experience with Johns Hopkins University Press. And I think that I was discouraged a lot. You know, you lose control of the title. You lose control over the. About the title and the COVID and all that. And I have to say that overall, it's been a very positive experience. And not having a background in this, I did have to do a lot of extra work to learn. And my own personal style is. Even though there are various writing organizations in the area, you know, this was a very private journey for me. You know, I would go to the Y and go swimming, and I would think about being in Ray's house and the conversations and the story I wanted to tell. And then I would go right over to the library and I would write the story. So I didn't find it as helpful to do writing groups and things like that. So. And I didn't share the stories much in the process of writing it because I didn't want versions of the stories out there. So I was almost. There was a little bit of anticipation when the book finally came out because I had not shared the book with too many people up to that point, and I hadn't really gotten a lot of feedback on it. So I was a little bit of. A little bit of trepidation. But, you know, it's. I, you know, the comments I've been getting have been very positive, and people are learning a lot, and they're, you know, looking into some of the resources that I'm encouraging them to look into. So it's been very positive. And I'm really enjoying going out into the community, libraries, senior centers, various other hospices. I was up in Greenfield at a hospice yesterday, just talking about these lessons and reflections, and it's been really nice. It's been really nice. Thank you.
- [52:50]
A
Well, that's great. I think you've written a wonderful book. You described yourself as not a writer by profession, but I. I would describe you as a writer to the core. You've written a very beautiful book. So I really appreciate you being here with us on this podcast. Maureen, I am going to put a link to your website, which of course has links to your book. Is that the way. Is that the best way for folks to learn more about you and about your book. And if they're interested, they can jump on a couple of different bookstores here, including the publisher, Hopkins Press, but also places like Barnes and Noble and Amazon. Is that the best way for folks to learn more about you?
- [53:34]
B
Absolutely. The website has some events, the events that I have. And right now I'm going to be going up to Vermont. My sister's a palliative doctor up there. We're going to do some events together. I'm going to be going up to Maine. I also have some virtual events going to my hometown of Walpole, Massachusetts, shortly. So absolutely, you can see some events. You can also see a tribute page which has pictures of some of the people we talked about today, my parents and nanny and such. And then the resource page should be very, very helpful to people.
- [54:04]
A
Okay, great. I will put a link in the show Notes. Oops, sorry. Take a. Jeff, go ahead.
- [54:08]
B
No, I was going to say there's also links to purchase the book from Johns Hopkins and Barnes and Noble Bookshop and Amazon.
- [54:15]
A
Great. Yeah, there's a lot here on the website worth checking out. And I will put a link in the show notes. It's Maureen Groden. That's G R O D E N. And again, Maureen, thank you for being here.
- [54:30]
B
Thanks for having me, Ray.
- [54:32]
A
Thanks for listening. Leaving a positive review and letting others know about this podcast will help a great deal. My mission is to help empower organizations that matter by supporting those who lead them. I offer coaching, mentoring and consulting services. You can learn more about me and my work@racepadoni.com.