Perry’s Story: What it means to have a good death

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Perry Limes Grief from the Other Side: Hospice, Loss and What it means to have a good deathWith a background as a respiratory therapist, Perry came to his leadership role as Director of Strategic Partnerships in an interesting way. In this episode of Grief from the Other Side, he shares his story, his professional and personal journey with hospice, loss, and explains what it means to have a “good death”.

Click here to listen to Episode 3 of Season 3 of Grief from the Other Side: “Perry’s Story: Hospice, Loss, and What It Means to Have a Good Death.”

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 Services here at Hospice of the Chesapeake and the Chesapeake Life Center. And I’m joined today by my colleague and friend Tammy Turner. Hey Tammy.

Tammy Turner:

Hey Amy. I’m Tammy Turner. I do community education and outreach for Hospice of the Chesapeake. And we’re going to be listening today to Perry Limes. Perry’s position is …

Amy Stapleton:

Perry is the Director of Strategic Partnerships and Business Development here at Hospice of the Chesapeake. And I think people are really going to be excited and surprised by his interview.

Tammy Turner:

Yeah, I agree with you. And he’s the first person from our different employees that we’ve spoken to that has more of a leadership position.

Amy Stapleton:

Yeah, I think Perry’s interview really gives that perspective of not just the importance of this work, but the “why” behind it. From the 10,000 foot view, he can see the difference it makes across the communities we serve and the patients we serve. But he also comes at this as a practicing clinician himself as a respiratory therapist. And so he brings that into this interaction and so I think you’ll hear in his interview, in our conversation together, how he weaves that in and how he really brings so much wisdom to this work. It’s not just about the bottom line or about the business development of counting numbers, at the end of the day, it’s really about the people. And so I’m excited to be able to share this interview with our listening audience.

Tammy Turner:

Let’s take a listen.

Amy Stapleton:

Hi everybody. I am really excited today to be sitting with, across the table from Perry Limes. Perry, tell us a little bit about yourself.

Perry Limes:

Thank you so much, Amy, for having me. My name is Perry Limes. I’m the Director of Strategic Partnerships here at Hospice of the Chesapeake. I am a native New Yorker and have been down in the state of Maryland for the past 30 years. I am a respiratory therapist by profession and so my healthcare background brought me into hospice in a weird kind of way. I’ve been in the hospice industry for a little over eight years now. When I started out in this profession, it was a job and then after that first year, I realized I can make a career out of it. And then after year two, I realized it was my calling. So I am on my horse, riding around the world, telling everybody about the beautiful thing called hospice. And that’s what I do.

Amy Stapleton:

I love that you bring this experience as a respiratory therapist to this work because it gives you some street cred, right? You go in there and you see the benefits.

Perry Limes:

Absolutely.

Amy Stapleton:

You see the need. What was it about hospice in particular that really drew you in?

Perry Limes:

Great question. I worked what we call in the respiratory worlds, cradle to grave. So I’ve done pediatrics and neonates all the way up till centurions so I’ve taken care of everybody. But in particularly when I got into the business side of healthcare, I was actually working for a long-term care company and we were opening up vent units. And it was actually vent patients not being spoken to, the families not really understanding the magnitude of just having a loved one be on this vent indefinitely. And like many in the healthcare industry, I was ignorant to hospice. They obviously don’t teach you that in respiratory school. I realized my nursing colleagues did not learn a lot about hospice in nursing school. And you would just see families lingering on for months and years on these vents, where there was really no hope for that patient. You would just come in the next day and see the patient on there and there was just hope in the machine and not hope really for the patient.

Perry Limes:

So just seeing that really sparked my interest and then when I had my first discussion with a hospice nurse, that is what really blew my mind. Because I listened to her do a family informational and spoke about social workers and chaplains and aids. And in my mind, I’m thinking, “Well, I’m a respiratory therapist. We’re just going to turn the vent off and patient’s going to die.” I didn’t realize there was all of these other characters behind the curtain.

Perry Limes:

So that’s when I had my light bulb moment and said, “This is pretty interesting. I want to learn more about it,” and realized how amazing hospice was. That it really wasn’t about death, it was honoring one’s life and really allowing a person and their family to make decisions that was best suited for them. It wasn’t suited for the institution taking care of them or the providers taking care of them. It was them empowering themselves and saying, “I want to take this back into my own hands. I want to, in essence, have a good death.” So that was powerful for me to see that.

Amy Stapleton:

I love that because one of the things we talk about are just the myths out there about hospice, right? And we know, as a hospice provider, the benefit that hospice offers is actually not only improving the quality of one’s life at the end of life, but often extending one’s life in a lot of ways.

Speaker 1:

What is lost.

Amy Stapleton:

Can you tell us a little bit about your own personal experiences with loss and just why you’re so passionate about hospice now?

Perry Limes:

Oh, absolutely. I come from a very large family. Dad is African-American and he’s one of 10 children. And my mother is Puerto Rican and she is one of eight children and obviously tons of uncles and aunts and cousins and extended family, it just goes on. And as those two big segments in my family, we never discussed hospice. We had death in the family and you knew the person was sick, they might’ve gone to the hospital, but we’ve actually seen folks in the home in what I now know is the dying process. They were just truly dying. And knowing that there was family support was okay, but we were still ignorant to what needed to be done. What was that dying process? Who’s really talking to us about this? And then more importantly, once it’s all done, it was time to go to the funeral home and bury your loved one and move on.

Perry Limes:

And once I got into hospice, realizing that there is bereavement afterwards, that there are support systems throughout that process, as the person is transitioning, that is really what opened my eyes. When I look back in my past with no knowledge of hospice, as to now looking forward, my family’s still large, so I have to be able to speak to them and really discuss that. The irony is I found out that my mother-in-law’s sister had passed away. Me and my wife got the call last night. And not knowing what I knew before, we wouldn’t even know how to handle her getting on hospice. But we had discussed it as a family, four weeks prior, she was having a serious decline, and it was really her speaking to my mother-in-law saying, “I’m tired. I don’t want to do this anymore.” She didn’t want to go back to the hospital. She didn’t want to be resuscitated. And how do you honor that?

Perry Limes:

You know, at times family members can be very selfish. We want them to be here, but we’re not in their body. We’re not feeling that pain. We’re not feeling that loss of control. But she was living in a nursing home. She couldn’t go outside. She couldn’t just walk and do the things that she had done before. So we elected to sign her up for hospice and really honor that life. And then immediately my mother-in-law felt the support, being able to speak to the hospice team. She saw that with her sister, she got to spend that quality time with her sister and she passed away in a very peaceful, loving way.

Perry Limes:

I think again, people need to be able to … Not everybody’s guaranteed, but if you can choose a good death, I think it really sets up that path for that. Because it’s again, not about dying, but we’re all mortal, we’re all leaving here. That is a common human experience. We’re all going to die. But how we choose to die is very important. And she chose to not be in pain. She chose not to go through all of these unnecessary therapeutics. She really chose to say, “I want to just be comfortable. I want to relax. I want to eat and hold my sister’s hand and talk about things in my past.”

Amy Stapleton:

That matter.

Perry Limes:

It was so beautiful. And again, it’s not only about the patient. It was about her sister and the extended family that she had. So seeing how hospice, again, embrace all that, I look back on the many deaths in my past with family members and there’s many times we missed the ball on that. So now, knowing what I know about hospice, anytime I can preach it, I’m there.

Amy Stapleton:

What a gift that must be to sit with a family, not just your own family, but any family when you’re out there talking about our services and know the difference it makes because you’ve seen it, you’ve witnessed it. I imagine that trust goes far.

Perry Limes:

Absolutely.

Amy Stapleton:

You mentioned some of the early losses that you had in your life and maybe how hospice could have made a difference. Is there one example where that really stands out to you that that maybe would have impacted just your family or the dying process for someone, if a hospice had been involved sooner?

Perry Limes:

None that I can think of. Ironically enough, one of my motivations in becoming a respiratory therapist was my grandmother who was in Spanish, mi abuelita. She died when my mom was 12, I never got to meet her, but she died with my mom and she had asthma, severe asthma. But that’s a chronic disease in how it’s managed and she had an asthma attack and passed away. But again, could have hospice have been implemented earlier, possibly not for the asthma, but I think of the support that comes with hospice, even afterwards, the counseling and the bereavement. Talking with my mom, it’s been the most traumatic event in her life, losing her mother while you’re a 12 year old child there in the house.

Perry Limes:

Knowing that hospice not only takes care of the patient during that end of life process, but also taking care of the family post-mortem, I think my mom could have definitely utilized counseling and some kind of grievance bereavement, for sure. And again, it’s a family of eight children. So, it really changed the dynamics and how do you handle that? I think listening to her now as an adult that would have definitely been there and I know we have camp for children now. And again, as hospice starts to grow as an industry and becomes more well-known, that no stone is left unturned when it comes to that. So even the fact that we have services to offer to children, I think that would have been so impactful for my mom back then.

Amy Stapleton:

I hear how that loss just reverberates throughout your family and made such a significant difference in your own life-

Perry Limes:

Absolutely.

Amy Stapleton:

… As well as certainly your mom’s.

Speaker 1:

What remains.

Amy Stapleton:

When you think about the losses that have impacted you personally and loss meaning, transition, not always physical death, but what is it that, I don’t know, that really motivates you to be so invested in having people have choice around end of life and knowing what resources are available for them?

Perry Limes:

Ironically enough, coming back into this role that I’ve been with at Hospice of the Chesapeake. I joined the company during COVID and COVID opened my eyes in a different way. Obviously it impacted the world and there’s a million different stories. But the story that I saw in relationship to hospice is people dying alone. There were too many people that were dying by themselves. And again, hospice, because we deal with end of life and we deal with this transition, you don’t get to do it again. If I make a bad cup of coffee at Starbucks, I can give you a larger one. I can redo the cup. If I mess up your order at the restaurant, I can give you the meal again and give you coupons to come back. You don’t get to do hospice over again.

Perry Limes:

And not only is that patient impacted, you just don’t want them to have a really traumatic death, but that impacts those who are left behind. Not only the family, but even staff, our facilities, our care providers. It’s just a very hard thing to deal with. So knowing so many people died alone, died by themselves, was hard.

Perry Limes:

And so I feel that what motivates me now is because that death was so much in our face most of the year. We all watched the ticker on CNN, seeing how many people have died. We all saw the ice trucks with bodies inside of them. Did these people get to see their loved one for one last time? Did these people get to hold somebody’s hand? It’s a terrifying thought. I think hospice is such an underutilized service. I think society looks at just cure, cure, cure, and not looking at our true mortality that we will die and what does that look like?

Perry Limes:

So my motivation now is have that talk, get your house in order, which are family. I’m a middle-aged man in my fifties and my children know what I want. My wife knows what I want. I don’t have to wait until I’m 80. I don’t have to wait until I have a cancer diagnosis. They know what I want now. So have the talk. If you have parents, I’m blessed to have both of my parents still living, but I have talks with my parents. What do you want? What happens when you can’t make decisions for yourself? Do you want me to do X, Y, Z?

Perry Limes:

And it’s from as far as funeral arrangements to ventilatory support to DNR status. You have those discussions and have them when you’re not inside an emergency room or you’re not inside of an ICU and your emotions are high and you have docs and nurses around you saying, “Make a decision, make a decision” and you just can’t think. Why don’t you have that discussion just over dinner? As dark or heavy as it may be, at least you have a better understanding so when that time comes, because it’s not an if, it’s when it comes, you understand how to honor that person better. You can make a more informed decision and discuss what it looks like.

Perry Limes:

Again, hospice is abstract to many people. You say the word hospice, and it immediately means death. And the bravest people, some of the happiest people, some of the most grateful people I’ve met have been patients on hospice. It makes you look at the world a little different. You don’t complain in line about waiting for your coffee. You don’t get upset when you’re in a traffic jam as much, because this individual just found out a few months ago that they’re not going to make it to Labor Day. And they’re very grateful and they’re very happy and they put their life in order.

Amy Stapleton:

Every moment matters.

Perry Limes:

Every single moment matters. The industry in itself changes you. You look at life a little bit different, and you want people to do the same. You want them to see life for what it truly is. It is fragile. There is a time limit. We don’t know the time, but the timer starts the minute you’re born. Eventually the timer goes off when you die. And all that time in between, you have to do something with. So I think allowing somebody to be able to do something with that in between space, is very important. That’s what I tell people. Hospice, is still that in-between space. Once you’re in the casket, then yes, death is the funeral home and the cremation, but hospice, you’re still living. What do you want to do with that life?

Perry Limes:

And I’ve had amazing stories of people doing some, what you would think are amazing things, but it’s simple things that are just amazing. Like wanting to see a sunset or wanting to go to the beach one more time.

Perry Limes:

I do have a story. I had an uncle back in 2017 that was diagnosed, my father’s brother, and he had severe lung disease, sarcoid of his lungs. He was respiratory compromised, was on oxygen and was a very stout man, his whole life and became very … Breathing was labored, became frail and wound up being diagnosed with this terminal diagnosis and was told, “Six months, there’s not really much we can do.” And they brought hospice to my aunt. There was some trepidation, but they went on. He is that rare person that went on hospice and graduated and came off of hospice and lived another two and a half years after his initial diagnosis.

Perry Limes:

And there was a picture that I posted on LinkedIn years ago of him sitting outside on his driveway, I believe it was, with his glasses on looking up at the eclipse. And it was just those simple things. You know, these eclipse come and then they go and you don’t see them for decades and he wanted to go outside and see the eclipse and he’s just up there looking at the eclipse. It was a simple picture, but it meant everything. So a very accomplished man, he’s done a lot in his life, but looking at him in that very simple moment, seeing something. What did the sun and the moon look like to him at that time? Something that we take for granted every single day, but for him at that moment, was everything. And he got to go to our family reunion and the family, we moved the reunion around him because he couldn’t travel. He was just an amazing man.

Perry Limes:

So seeing him, just reminds me about the little things matter. All the little things matter. And again, what you see right now, the sun, the moon doesn’t look the same to somebody that’s told, “This may be your few last days of seeing the sun and the moon or touching the water or just sleeping in the bed with your wife.” How does that feel? What is the food taste like?

Amy Stapleton:

Everything changes.

Perry Limes:

Everything changes.

Amy Stapleton:

In that moment.

Perry Limes:

Everything changes.

Amy Stapleton:

It’s such a beautiful story of honoring the fullness of who he was and who he was till the very end. What a testimony you are.

Perry Limes:

Thank you, thank you.

Speaker 1:

What’s next?

Amy Stapleton:

As someone who is out there talking with people all the time about hospice, what is it that you most want people to know or to have in mind as they’re making these decisions?

Perry Limes:

That it is not an easy decision. I think the first thing we need to address is the difficulty in the decision. I would be remiss if I said that this is not an easy choice to make, to be able to accept that and to really meet people where they are. If you are a loved one and you see your family member going through this, they’re going to be going through something emotionally, physically, mentally, spiritually. Understand that it’s difficult. And if you are the patient know that it’s going to be difficult for your family, as well. So there is no easy part to this. And it may be there might be an exception to the rule where it is just easy for folks to say, “I’m ready.” But many times it’s not. You go through those phases of grief and you go through this denial and you go through a lot, but that’s okay. You have to be okay to not be okay. But then once you get through that, know that the best part of hospice is you’re never alone.

Perry Limes:

Again, I go back to 2020 when I saw all of those deaths and people being alone. You’re not alone. You are in a circle and you, the patient and your family are in that inner circle. And then you have all of this hospice family around you on this outer circle and your greater community around you on that outer circle. Knowing that you will be supported. Knowing that you will not be judged. Knowing that you will not be harmed. Knowing that you will be cared for. Knowing that you will be understood. Knowing that you matter. Knowing that your life has meaning is pretty powerful when it’s the end of the life. And I’ve seen hospice time and time and time again, be able to deliver all of that and then some.

Perry Limes:

It is not the same experience for every person, but it is a beautiful experience for most. And we all have shared stories on it and I would definitely encourage people to talk to somebody who has experienced hospice. It’s just like going to a restaurant that you like, and you say, “How was the food?” Ask somebody, “How was your experience with hospice?” And so many times you hear the words, “Angel,” or “They were the best nurse ever.” Or “This aid was magnificent. They were part of our family.” Those are hard things to come by because this is a very intimate service. This is a very emotional service and you have people that are in this industry that are invested in the community. They are the community. They’re not outside of it, they are part of the community. They are parents, they are children themselves.

Perry Limes:

I was reading today on an email about our nurse that we’re taking care of that’s 96 years old and she was a hospice nurse for 30 years.

Amy Stapleton:

Wow.

Perry Limes:

And she’s one of our patients. How cool is that? So she’s taken care of how many patients over the course of her time, and now we’re taking care of her. So I think it’s something that you have to find the beauty in it and there is beauty in hospice. People will always ask, “What is hospice like? It’s dark and it’s death and sad.” And I say, “Come to my office. Come with me out to the field.” You don’t see sadness. You see happy people. You see people doing their jobs with a smile. You see the patients smiling back. There’s nothing sad about it. It’s actually a really beautiful, beautiful service. I would tell people, ask people about hospice. Ask your neighbor, ask your family, ask your doctor, ask them, “Tell me about this hospice. Tell me what that’s like. What’s the experience of hospice.” And they’ll see. They’ll, they’ll see for themselves.

Amy Stapleton:

How would they go about even starting that conversation if their physician is resistant or if the people around them aren’t quite bought into hospice? How would they contact us to begin that conversation or where would they start?

Perry Limes:

Again, they can contact, call our 1-800 number (877-462-1101 ). We have had just regular community members ask, “Hey, can I speak to somebody about my mom? Because, I see decline. I don’t know what this looks like. I’m not a medical professional, but I just see.” Whether it’s dementia and mom is just being forgetful and she’s wandering. It could be COPD. It can be heart. People think hospice is really geared around cancer and I know that’s a big component, but no, it’s really not. Most people die of frailty. They die because they’re just starting to see the end of life and their body starts breaking down and we’re just physical beings. I should say souls wrapped up in flesh and bone and blood. But that’s really why most of us leave here is because our bodies just break down. You don’t have to have a terminal cancer diagnosis.

Perry Limes:

And sometimes families don’t truly understand that so they can reach out and ask and then we can help guide them through that. To even have the discussion with their provider to say, “Hey look, would you like us to contact your provider?” We have a bevy of clinicians all the way up to our CMO, Dr. Bush, who I find to be phenomenal and can talk to anybody about it. Whether it’s another chief medical officer of an institution or a family member who has a high school education, it doesn’t matter. He’s going to make you comprehend what he’s communicating to you and you’re going to understand.

Perry Limes:

But then, Amy, the second challenge is the community themselves. They have apprehension. They don’t want to hear it. And ironically enough, depending on what community you’re in, it’s not always clinical. Sometimes it’s psychosocial. There’s inherent fears of the healthcare industry. There’s financial issues. It’s sad that in the richest country in the world, we still make healthcare decisions based on our ability to pay. And most people don’t realize that hospice covers a great variety of your care and people need to understand that. Many people don’t go to the dentist because they say, “I can’t afford it.” Well, they’ll do the same thing at end of life. “I can’t afford that.” “Well, did you ask somebody? Did you talk to somebody? So let’s talk about what that looks like.” “I didn’t realize that they pay for DME (durable medical equipment). I didn’t realize that the meds are taken care of. I didn’t realize that the commode is going to be brought there. I didn’t realize that if my mom gets sick in the house and it’s on the hospice, the ambulance will take her to our inpatient care center.”

Perry Limes:

People need to understand and so sometimes they don’t know what questions to ask, but I think the first thing you have to teach people is just ask any question. The questions will start to flow afterwards. Just ask the first one. That’s it, you just need to ask the first question.

Amy Stapleton:

That’s really good to remember. And I think, as you say, makes it such that there’s no dumb questions, right? Wherever we start is where we are. I love it that people … If somebody is hearing this and they’re out there and they don’t know where to start, just pick up the phone.

Perry Limes:

We have great team members. They will guide you through the process, give you the information that you need, again, dispel any myths that you have. And most important, again, we’re the subject matter experts when it comes to hospice. Yes, you can ask friends and families of their experience, but they might not understand all of the nuances and the regulations and what’s covered and how it relates to your insurance. So pick up the phone and we can give you that information. It doesn’t cost anything. It’s not an infomercial. It costs you zero. Only thing it costs you is your time, but the value you get from the information you’ll receive, is priceless.

Amy Stapleton:

I’m just in awe of everything that you’ve shared Perry and I really … I just imagine what a comfort that is to know that you are truly with people. So much of how I describe hospice is bearing witness, that we get to bear witness to people’s lives. It’s such a sacred privilege, and I hear the reverence and the respect that you bring to this work and I know the lives that have been changed for it. So thank you so much for your commitment, for showing up, for time and time again, being willing to step in this vulnerable space with people who many of them don’t know what a good death is or what’s possible or what the future will bring. But with leaders like yourselves, I think that they’re in good hands and I’m just very grateful.

Perry Limes:

Thank you so much for this time. I truly appreciate it. Thank you so much.

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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