Grief from the Other Side Podcast: Charles’ Story

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Grief from the Otherside Podcast: Charles' StoryAs a professional liaison, Charles is often the first person to talk with patients and families about hospice care as well as the first to talk with families about the loss they may soon experience. He shares his experiences about the importance of meeting people where they are in their journey with illness and loss in this episode of Grief from the Other Side.

Click here to listen to Episode 4 of Season 3 of Grief from the Other Side: “Charles’ Story: How limited personal loss leads to a unique perspective.”

Speaker 1:

Grief From The Other Side, where the bereavement experts at Chesapeake Life Center talk about living with loss and sharing stories of hope and resilience.

Amy Stapleton:

Hi, I’m Amy Stapleton manager of bereavement here at the Chesapeake Life Center at Hospice of the Chesapeake. And I’m here today with my colleague and friend Tammy Turner.

Tammy Turner:

Hey, I’m Tammy Turner. I do community outreach and education for Hospice of the Chesapeake and today’s conversation, we’re going to be listening to Charles Harris, whose role at Hospice of the Chesapeake is in professional liaison, working with patients and families, helping them understand what hospice is and how they can get on service.

Amy Stapleton:

You know, what I really got from talking with Charles, Tammy, is he’s someone that actually hasn’t had a lot of personal experience with death. And so he comes to this work with an entirely different perspective. And so he talks about in his interview, how he can really meet people where they are, because death is a new and sometimes frightening and different experience for everyone. He doesn’t make assumptions about that or what it’s going to be like for each person or for each family. He just meets them where they are in their concern and curiosity, and coming from a mental health background himself, I think he brings a lot of insight to that process and can really just walk with people through this journey. So I think people are going to get a lot out of listening to Charles.

Tammy Turner:

All right. Awesome. Let’s take a listen.

Amy Stapleton:

Hi, I’m excited today to be here with my colleague Charles Harris. Charles, welcome.

Charles Harris:

Hi, thank you. It’s good to be here.

Amy Stapleton:

You’re welcome. Tell us a little bit about your position at Hospice of the Chesapeake and how long you’ve been in this role and what you do.

Charles Harris:

Okay. So I am a professional liaison and I’ve been with Hospice of the Chesapeake for about a year and a half now. And it’s kind of a unique role I would say in that it merges a lot of different components that are attached to the organization, but the best way to sum it up is that we are kind of the first line of contact with families, with the community, with patients themselves. And our role is to really educate them on what hospice is and help them kind of begin their possible journey with the organization.

Amy Stapleton:

So what got you into this work?

Charles Harris:

That’s a good question. I would say most people don’t sit around the classroom and say one day I want to work in hospice, but I’ve worked in behavioral mental health for many years and it’s something that has always interested me. My background educationally is in psychology, so I’ve always been a people person and wanting people to feel empowered to make decisions that are best for them and for their loved ones when it comes to health care and support. So I was looking for something new and something different because I had been working in the same role for a long time. And I kind of just stumbled into this position. I knew someone that worked in the organization and then they kind of encouraged me to apply. And next thing you knew I was here.

Amy Stapleton:

Here you are. Oh that’s wonderful. What an asset you are.

Charles Harris:

What is lost?

Amy Stapleton:

We were talking earlier and you shared that actually you don’t have a lot of loss history in your life. Certainly have experienced losses of different sorts. Maybe not just physical death, but tell me what it’s like to do this work, but coming at it with a little distance. What’s that been like for you?

Charles Harris:

As we were kind of just saying, I mean, I am lucky and blessed enough that I have a very large family and a lot of them tend to live a long time. And so I’m still kind of on that younger side of my family in a weird way, even though I’m probably middle-aged technically. And so I still have two of my grandparents who are in their nineties. Both of my parents are with me and I still have my grandfather’s older brother who is 99 this year. I think with that, my family hasn’t had to really discuss a lot of death on a regular basis. And I realized that’s a huge blessing, and it also can be a bit of a curse because we don’t talk about it. And so when it does happen, it’s uncomfortable, we don’t really know how to begin the conversation.

Charles Harris:

So even when I said I was going to be working in hospice, my mother specifically was like, “I don’t know, what does that even mean?” Even though I saw her go through the hospice process with her mother. So it was definitely… I think I approach it in working with our families and patients in a way that I realize most people unfortunately don’t talk about it in their families. So I kind of approach it where I am that person that’s helping them begin the conversation. And I have empathy I guess, for understanding that most people aren’t sitting around saying, “Let’s plan for how we’re going to deal with mom or dad or grandmom at end of life.”

Amy Stapleton:

Yeah. It sounds like that really gives you a unique perspective to just kind of be there with them as they’re sorting it out. What is it that you wish people knew about hospice in those moments? Or what is it that you say to them when they’re really coming at it from this unknown place?

Charles Harris:

Yeah, actually I’m glad you asked that because it’s one thing that I feel like I do in each of my conversations with families that I probably should help encourage my colleagues to also do, but I really helped that if I’m talking to an adult child of a dying parent, for instance, and they’re dealing with that stress and oftentimes by the time they’re coming to us, they’ve still been managing that possible long-term disease or the slow process where they would need hospice. I help them understand that obviously we are here to support their loved one, but so much of hospice is for them as well. And as soon as I say that, even if it’s on the phone, I can tell that there’s a great deal of relief that they experience.

Charles Harris:

So I think that that is one of the things that I would want more people to know is that our nurses are going to swoop in and make sure that their loved one is comfortable and they’re getting as much support as we can give for them where they are, but the family needs to know that we’re going to help guide them through that process.

Charles Harris:

Because again, a lot of times people hear hospice and they’re like, “Mom or dad’s going to go live at this place and then they’re going to deal with it and then I will just go through a traditional grieving process.” But there’s a lot that families are called to do when they are dealing with a dying loved one. And so I think it is very important for them to know that we’re going to help guide them through that. And then also help them process the grieving component of it.

Amy Stapleton:

What is the process? So can anybody just call and say, “You know what? My mom’s in the hospital, she’s not doing well, the doctors have told us to call hospice.” How does that process start beginning to end?

Charles Harris:

It’s a really good question. I think most of the time families don’t ask for it because it goes back to our point of people don’t often talk about it. And so it is usually a conversation that they have already started to have when they are coming to me. So the doctors said, “Well I think dad or mom might be ready for hospice now. And I can put you in touch with Charles. He is one of our partners that helps families kind of work through that process.” And usually that is how they land with us.

Charles Harris:

But oftentimes they do sometimes just call up and say “I’ve dealt with hospice with my dad and now I think my mom is ready.” Or, “I talked to my neighbor, their mom is on hospice and they thought it would be a great idea to maybe explore that as some support for my parent.”

Charles Harris:

And so what that really looks like is that a doctor still has to be the one to actually say, “We think this is the appropriate time.” And that doctor usually comes to that decision when they believe that there are six months or less of life, obviously we don’t know how long anyone’s going to be here. The universe drives that, but when the doctor is able to make that determination and they often make that determination by seeing lots of hospitalizations. So if mom has been to the hospital in January, February, March, and then maybe not for a couple more months, but now here we are and it’s July and August again, they might say do you want mom to keep coming here? What do you want the quality of life to be? And again, that’s the conversation that hopefully the doctor is having with them.

Charles Harris:

And then I follow up with, oftentimes they’re hearing it at different points multiple times because it is a big decision. We obviously get people that are at a crisis moment where we think there’s a week left, but we don’t want people to wait that long. And so how do you start the conversation of, “Mom might be here six months. It could even be a year, but is this the right time for us to start exploring it?”

Charles Harris:

So a lot of it is every death process is unique, which again is something we have to help families understand, which oftentimes they’re like, “Well, this isn’t how it worked with my dad. So this is different for me.” And so again, to that beginning of the conversation of, I haven’t had to deal with this a lot is that I also recognize that then that helps me to begin that conversation with the family at a unique starting point.

Charles Harris:

I don’t pick up the phone or see the patient at bedside with their loved one and assume that it’s all going to go the same way. I let them kind of drive it. You know, “What are your goals right now for your loved one?” And then that usually is a question that allows them to start to say, “Well we haven’t talked about it at all.” Or they’ll say, “Well, she told me point blank, “I do not want to be in a nursing home.” And so they want to be home. Can you help us get mom home?” And I’m like, “Cool, that’s what we’re going to do. Let’s make it happen.” And so that is how the best way to, I guess, approach it is from that really helping them to still be able to make the decision and drive even end of life, like what do they want it to be for their loved one or not.

Amy Stapleton:

What a gift that must be when there’s so much emotion and kind of so much chaos going on in the life of a family.

Speaker 1:

What remains?

Amy Stapleton:

I sometimes laugh when I look back and I tell people what I do and their response is just priceless. And I think on one hand there’s an occupational hazard that comes from working with the hospice, because we think about death a lot. We talk about death, we see death a lot. I also think it’s an occupational gift in some ways. How has working for a hospice really impacted you in kind of your own maybe with your family or just your own life experience in grief process?

Charles Harris:

Well, again, to the point of, I haven’t had tons of death around me, so I am thinking about death a lot more, and I have to understand that that is something that can be taxing at times, but it’s also empowering. And so there’s a lot of, you understand this probably more than anyone in your role, but it’s definitely a lot of self care.

Charles Harris:

You have to also take time for, you have a really tough meeting with the family and you need to actually respect the fact that that is going to impact you in a particular way. So for me, it definitely the death conversation is something that I have had to become more comfortable with. I don’t think I was ever uncomfortable with it. I just wasn’t familiar with it is maybe the best way to think about it. And I’ve always done well in having difficult conversations with people, I think so it’s kind of naturally been that way.

Amy Stapleton:

Tell me about an experience working with a family that just really stands out to you as making a difference.

Charles Harris:

That’s hard to say. I feel like I make a difference every day, which is very weird and generic to say.

Amy Stapleton:

No, that’s true.

Charles Harris:

I definitely get families that are just like, “Can we sign this up? Great, let’s get it moving. And I’m done with it.” But I guess one that stands out in my mind, it’s a patient who was referred many months ago to us pretty early on in her disease process. And it was from one of our hospital partners in DC. And they are really good at making early referrals. But one of the challenges with early referrals is that the family is expecting more from us and possible even improvement, where we were hoping that the patient’s going to get better, or “We want mom to get better. And we want mom to start eating again.” And so at the same time realizing that she’s not eating right now and it doesn’t look like she’s going to get better.

Charles Harris:

So it was a large family, so I talked to everybody, I talked to her sister, I talked to her husband and I talked to her adult kids, I think I even talked to her granddaughter and had the same conversation with each of them that was maybe slightly different, but the same general conversation. But they were just so appreciative of the fact that I took the time to do that. I went to the hospital and saw them. I went to their house one time and met with them. And so they were still going back and forth to the hospital. And they went off service because the hospital and a specialty surgeon decided that they would do surgery and stop the blockage so that she could start eating again. And it worked, which was surprising to lots of people. And it was again to our point of, we don’t know how long someone’s here, we’re just here to support them when they’re here and how they need us.

Charles Harris:

So that happened. And she was great for many months. And it was just two weeks ago that she was back at the hospital and the family decided again that they wanted to come on hospice. And so it was one where the conversation was very different. The second time they said, “Oh, yes, I do remember talking to Charles. And like back in January, I think it was so we think that now it makes sense to get her on this in a more robust kind of a way.” And I can see the progression of how they were able to spend more time with her and it did work out great. And she’s still here right now, but it is one of those things where the family got to where they needed to be when they needed to be. The patient got to where she needed to be in supporting them, which is again another piece where a lot of the times I talked to the patient at that point when they’re still doing really well, and they are the ones saying, “I’m kind of ready for this next step, but I’m concerned about my family.”

Charles Harris:

And so they are doing everything they can to make sure the family members are getting the support they need, which is again to that earlier comment of, I make sure I let the patient know, “We’re going to try to take care of them as best as we can too, just like we’re going to try to take care of you as best as we can.” And that makes the patient feel better. So that is one that sticks in my mind. I don’t think I’ll ever forget that family. And they are great. They check in every once in a while. And so…

Amy Stapleton:

I love that example because I think no matter how people come to us or what they’re facing, there can be this overwhelming sense of grief anticipating what’s to come, but also fear in the unknown. And to know that you’re going to walk with people through that. So whether they sign up today or need us today in the same way versus in six months, or in two weeks like that we’re going to be there with them through that process. In the beginning to the end, right? Like that’s a incredible gift.

Speaker 1:

What’s next?

Amy Stapleton:

Well, you haven’t experienced a lot of loss per se, physical death loss. I’m wondering what are some of the things that you’ve learned in this position and just personally, professionally, that you would offer to families kind of making this decision? What would you hope that they understood about loss or about hospice in general?

Charles Harris:

As far as understanding loss, I think that the important piece is that families and patients need to understand this is the life cycle. This is how it happens. And it’s different again, like we said, for everyone, but just helping them understand that most of the times, people don’t have to go through hospice processing of this conversation with me. I always say most people only have to do this a handful of times in life. So it’s okay , one, to not know. It’s okay to be unsure. It’s okay to ask as many questions as you have and to think about it and then get back to us and all of that and just allowing them to get there. So with loss, a lot of it is just, everyone has their own timeline and you’ve got to figure out what you want, what you need and how you need to get there.

Charles Harris:

So that is the one piece with loss, the other piece as far as how hospice can help. I mean, I think again going back to the whole, we are here to help the whole family is so important. The first time I kind of remember my great grandfather died when I was probably in high school and it was, again, he was probably like a hundred and then he died and we went to a funeral and that’s just how it kind of happened. We didn’t really talk about it much.

Charles Harris:

The one that probably had the greatest first impact on me, I was an undergrad and my mother’s father died. And I remember when I was getting dressed in my residence hall for class or something. And I looked out my window and I saw both of my parents walking to my residence hall room and they live about an hour from campus. And they were never just popping in on a Tuesday at like nine o’clock saying, “Oh, let’s go check on Charles.” And I knew that my grandfather had been sick and I was like, “My grandfather probably died.” And it was on the way. They would have to go past my university to get to his home. So it all made sense to me.

Charles Harris:

So they told me and I said, “Okay, great.” I don’t know what I even said. It was kind of like a blur and I just remember I immediately called my brother and said, “Did you hear about granddad?” And he said, “Yeah.” And he was still in high school. And he said, “I didn’t go to school today.” And I said, “Okay.” And that was kind of it. And then again, went to a funeral, that was really kind of it.

Charles Harris:

And then my grandmother, my mother’s mother died probably many years after that, but there was more of a… I guess at that point I was older. I was an adult, if you will. And I kind of saw that process a bit more where she actually did go into an assisted living. And then we brought in hospice and I was there probably within hours of her passing. I was with my mom when it happened, which was really difficult for her. My parents are very like strong people, and my mom was very distraught at the time. And I remember the hospice people, all being there saying, “Do you need to talk to people? Do you need therapy and all that stuff?” And part of it also is my mom is a counselor, and so I kind of think she was very understanding of this is just the process.

Charles Harris:

And I was in my, I don’t know, psyche 200 courses…

Amy Stapleton:

So you knew services and resources were available as needed.

Charles Harris:

Exactly. So again, I remember the piece of them saying, “We are here for you all.” And I never thought about that as far as hospice is concerned. So again like that whole process of the grieving piece of it, I just think people should really understand that they do have to start to prepare. And I think that’s maybe something, again I’ve been doing more is because we didn’t talk about it as a family. I think now I am the one who was saying, “What is the plan with grandmom and granddad who bizarrely are in their nineties and still live alone.” And we maybe send somebody there for 10 hours a week to like clean and whatever, but helping them say, we need to prepare and how do we do that?

Charles Harris:

And I think that that is the piece that I just would encourage families to start that, and maybe not wait until 97. So it’s now even me talking to my parents who are in their seventies saying, “What do you want? What are your goals with this?” And asking those questions early on. Even I have one niece and I said to her, so hospice, she’s trying to kind of figure it out. She’s 11 and all she really kind of got out of it was, “You don’t have any kids, Uncle Chris, so I’m going to do have to do that for you and for mom and dad?” And I said, “You might, but that’s okay, we’ll help you get there.” And she said, “Oh, okay.” And you know, kind of walked away.

Charles Harris:

So it is one of those things where you do have to, it’s a safe conversation to have with all different ages. If anything, it’s easier with an 11 year old, because it’s part of their whole learning process-

Amy Stapleton:

I love that.

Charles Harris:

As opposed to starting with my 70 year old parents saying, “Can we talk about what to do with your 90 year old parents? And they’re the ones like, ” I don’t want to do that today.”

Amy Stapleton:

And so you’re kind of normalizing that for her early on and saying, this is what we talk about, this isn’t secret and not even really private, this is like a part of our lives.

Charles Harris:

Yeah.

Amy Stapleton:

Wow.

Charles Harris:

Exactly.

Amy Stapleton:

Well, thank you so much for being with us today. It’s great to connect with you in this way. I’m so grateful that you’re working with our families and just no doubt know the difference that it makes to have you on the front line with them and beside them as they’re making these decisions.

Speaker 1:

Grief From The Other Side podcast is made possible thanks to the generous support from the John and Cathy Belcher Institute. For more information on grief and loss services, visit chesapeakelifecenter.org or call 888-501-7077.

 

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