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Caregiver Syndrome and How to Avoid it
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Caregiver Syndrome and How to Avoid It
Brief summary of episode: Family caregivers are often faced with a unique set of challenges as they juggle the demands of work, family and caregiving. From managing complex medical tasks to navigating legal and financial issues, it can be difficult for caregivers to find balance in their lives while providing the best possible care for their loved ones. At the end of life, it is common for a family member (usually an adult daughter) to be suddenly thrown into a position where they are fully responsible for the care of their dying loved one. Although hospice services help tremendously with structuring a care plan and receiving the necessary equipment and medications to provide this care, the family is still responsible for the majority of hands-on care. Because the current system leaves most of the work to unpaid family members, it takes a toll on already stressed and grieving individuals and leads to Caregiver Syndrome – a silent epidemic that is taking place in our country and around the world as a direct result of an inadequate elder and end-of-life care system. We can, and we must do better.
In This Episode, You Will Learn:
Caregiver Self Care Checklist Click here
Free Family Caregiver Resource Center Click here
Learn More: Doulagivers InstituteClick here
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Speaker 1 (00:01):
Hi everyone, and welcome to this episode of ask a Death Doula and Death Talk. My name is Suzanne O’Brien. Thank you so much for being here. I want to remind you that the fifth annual World Training Day, the Family Caregiver end of life training is April 20th at 7:00 PM Eastern Time. It is going to be amazing. People are joining from all over the world. We have a very special guest, Ken Ross. He is the president of the Elizabeth Kubler Ross Foundation, and he’s gonna be sharing his mother’s travels around the world, working and educating an end of life and also what the foundation is doing today. So it’s gonna be an incredible event. You can sign up with the link above or you can go ahead and go to doula givers.com again, world Training Day. The fifth annual is April 20th at 7:00 PM Eastern Time. We hope you join us Today we are gonna be talking about caregiver syndrome, what it is, why it’s important, and what you can do to help your family, your friends, your family, any one of you’re caring for, avoid or go through, um, this part of our inevitable part of our lives without getting stuck in caregiver syndrome, getting just pulled under with all of the weight, emotionally, financially, and emotionally, physically.
Everything has to do with caregiver syndrome. So we’re gonna go over it because it is a real issue, it’s an epidemic right now, and it’s only gonna get worse as we continue on. So the first thing I wanna do is share with you what is caregiver syndrome and why is it important for us to understand. Medicare recently did a study and they have shown that 95% of end of life care falls on family caregivers. Yes. Even with hospice involved. Now, say, I wanna say that again. 95% of the actual hands-on care for end of life patients is done by family members. I have a background as a hospice nurse and oncology nurse, and I’m gonna tell you this, that I have been honored and privileged with being with over a thousand people at the end of life. And most of those end of lifes did not go well.
It has led me to develop trainings and start the International Doula Givers Institute, which again supports education free resources, community events to help families and patients navigate the end of life space so that they can have a positive end of life. This is critically important that we understand the elements that make end of life a positive one and the ones that make it not positive. And I’m gonna say this, that when death is the number one fear in our world right now, and I totally understand it, but when there’s a fear of something that by the way is that fear of death is usually from the unknown, fear is usually about the unknown to something that you
Speaker 2 (02:59):
This anxiety or fear around it when you really don’t know the truth about it. We’ve been dying for thousands of years, we know how to do this, and I wanna tell you this right now, end of life can be the most beautiful, sacred experience with the right education, kindness, and support. So first I wanna share, share with you that you do not need to be afraid that you should not be afraid. That the way to actually reduce your fear is by learning about it, learning the truth about end of life, and also empowering yourself with the skills that you are absolutely gonna need one day to care for those you love. Be empowered, be inspired by the teachings of end of life, and also know that how that end of life is going to go is directly gonna impact your bereavement and grief after the loss of someone we love.
Why don’t we have it be as healthy processes possible? Absolutely. And it can be. So let’s talk about caregiver syndrome. Family caregivers are often faced with a very unique set of challenges right now. They, we, we have, you know, it’s usually falls on a female in the family that’s the main caregiver. People, most people are usually working. We usually have many different hats that we wear, and all of a sudden they find themselves thrust into the role of a caregiver, especially when it’s for somebody at the end of life. There’s such an emotional rollercoaster that goes along with that when we’re saying goodbye to somebody we love. But also there’s practical skills that are just missing in our world. So caregivers find themselves navigating this space of unchartered waters with not knowing the first thing about how to do that. And then often having to wear many different hats.
You know, being a mother, it’s called the sandwich generation, having children having their own work that they need to do, um, and now caring for a elderly parent that’s dying. And so we find ourselves in the middle of physical, emotional, and even financial, uh, stress and burdens. So one of the things that I wanna share is that 80 to 90% of a positive end of life now, no matter what the disease process was, when I have witnessed those that have had, and I’ve studied it from the very beginning when I’ve had a family that had a beautiful end of life. And believe me, there weren’t many, there were not many I studied, what are the elements that made that family have a positive, beautiful end of life experience? And by the way, when you’ve been honored and wi to witness and be part of an end of life that goes well, your life will change from that moment f forth in the best way possible.
And what do I by that? When you’re part of an end of life that goes well, you understand the love, the unconditional love that just embodies. It’s almost like being at the doorway to heaven, the threshold to heaven. Having, having a glimpse into what that looks like and feels like it is extraordinary. In fact time, as you and I know it disappears. There have been end of lifes that I have been caring for and been a part of that when I came out of that house I had to remember and what day it was, what time it is, like where were we because we were just so in a different, if a different energetic space. And it was so beautiful. You learn the power of your presence is the best medicine you have to give, not just to somebody the end of life, but in life.
And we’re just not present anymore. We’re not present in our minds and our bodies. We’re just always, you know, going and on the phone and, you know, just missing the, being part of our human being experience. And when somebody’s at the end of life, it does not get more real than that. We get present, we put the phones down, and we really, we really hopefully engage in that experience with our loved one because we’re for, we know it’s the last time we have. So end of life thrusts us, hopefully into the presence of this very moment, knowing it’s the last time we have with one another. And that presence, stepping into the present being moment is one of the greatest gifts that, and greatest teachings that you can learn about, again, connecting to a higher part of you. And it teaches us that there are things that happen in our lives.
And one of the beautiful things about end of life is that there’s that moment of, it’s now that what I call the window of opportunity. And it’s this time period that we get to say what we always wanted to say to our loved one. Or we get to say, you know, I’m sorry, or please forgive me or thank you and I love you. It really teaches us about the important, what’s important in life. And we don’t wanna wait to an end of life experience to learn these lessons. And that’s why when what I say about learning about end of life and learning about death is it’s our greatest teacher about how to live. And those at the end of life will share with you what they want you to know. And if we’re not listening, we’re absolutely being foolish. They, they want, they’re not trying to sell you anything.
They are getting ready to leave this world. But they want you to know what they want you to understand about the life’s journey so you can make it the best possible life for you. And this is about what they say is that we are all connected to one unconditional loving energy, is that every experience in their life was an opportunity for them to grow as a being. It was an opportunity to grow, to learn, to love, to evolve. And these type of lessons are things that we are absolutely missing in this human experience as a whole. Because you see the chaos that we see out in the world. And if we all knew that we were connected to one unconditional loving energy, if we knew that presence and true presence and no judgment is our greatest gift, we can give to one another. And we showed that in our world what a different life we’d be living amongst each other.
And also, you know, respecting the planet and respecting animals because it’s all part of what they say that we’re connected to. So when you’re gifted with being part of an end of life that does go well, it’ll change your life forever in the best way possible. What’s happening right now is most people are coming on end of life services and they don’t know the first thing about how to care for their loved one. They’re also thrust into that role. And fear, usually fear just is a crisis. They’re in a fight or flight is part of that whole entire journey that it can’t go well with that. So what we wanna share is how can we support family caregivers in having the best possible journey with their loved one? And so let’s talk about caregiver syndrome and then we’re gonna talk about what you can do to support one another and even yourself to learn skills and to be empowered to care for your loved one and even inspired in this last sacred, beautiful part of the life’s journey.
So caregiver syndrome is something that people are suffering from, uh, in just millions of people right now because they are being put in these positions to care for loved ones, stressed out without the support, without the resources, and they don’t have the tools to know how to do that. So they’re suffering in many different ways. I wanna talk to you about the most common symptoms you would see in caregiver syndrome so that you can understand if you are experiencing them or someone you loves experiencing them. Emotional distress, high levels of emotional distress. Now we know that watching somebody you love that is at the end of life can be one of the hardest things that we actually go through. But not having the support and tools to know how to navigate that space makes it a thousand times more difficult. And so the emotional stress that caregivers are going through, um, as they are witnessing this without the tools on how to do that and also doing all of the other, um, physical caregiving can just be completely emotionally overwhelming.
We know that people are suffering from depression and anxiety right now in amounts and levels that we’ve never seen before in history. You add on now forcing somebody to be in this space of caregiving without the tools and resources to do that and the emotional stress is completely overwhelming. The physical exhaustion, caring for someone who’s dying can be extremely physically demanding and intense. And most family caregivers have to figure out a way to provide this care to the best of their ability by themselves, by themselves. As a hospice nurse, I was there once a week for one hour and I was supposed to teach the family how to do the care. The system is broken and it doesn’t work well. Basically when I would come in, I would be assessing the patient and what I call putting band-aids on the situation. Just what was, what was jumping out at the moment.
There’s no time to teach people what they fully need to know from start to finish, how to care for their loved one, the intervention, what they can expect. There’s just no allotted time in mainstream medical at this moment. And so I can’t teach people physically what they should be doing and how they should be caring for somebody. We just don’t have the time. But yet family caregivers are finding themselves, trying to figure it out as they go along end of life, especially at the end in the transition phase, can move very quickly and be very scary. Knowing what to do ahead of time and anticipating the needs is absolutely everything for that care. So now they’re physically exhausted, they’re emotionally exhausted at caregivers and mental health deterioration. I had this one family that I was caring for, it was a husband and wife. They were in their eighties.
And I have to tell you that no one should ever be taken care of somebody who’s dying by themselves, especially in their eighties. It can’t, it can’t happen, especially at the end of life in the, in the end of life care. So I remember coming to the house, this woman was about 82 years old, taking care of an 84 year old husband who had been with dementia for many, many years. And I remember coming on this visit and he was in his sleeping coma at this point. So he was, he was not responsive. He was, you know, he was asleep in his coma getting ready to die, and she had not touched him for days. She had not touched this man for days. And when I touched him to do the assessment, all of his sheets were soaked in urine. And I know that she is a lovely woman and wanted to do the right thing.
I know she was completely overwhelmed. And so she hadn’t checked him. She was overwhelmed. I could tell she was checked out herself. And so I just said, you know, we need to change him. Can you just assist me in this? Because it really can’t be done by one person and we got him dry. And I often think about that case and how many situations are like that, that the patient is not getting the care they need because the overwhelm of the caregiver makes them not be able to even be present, not know what to do, and just check out. And so we don’t want this to happen. So mental deterioration, this, all of these factors are called caregiver syndrome. And we have got to do so much more that we’re doing, um, for support, for resources, for community, um, engagement, a me a meaning that creating support groups where people can just go check in.
And the beautiful thing about having everything online now is that we can check in, we can have these way ways to connect with family caregivers that are in the home, not able to leave, but but being able to get, again, resources, even just people to be present and to listen to have that presence and compassion of what they’re going through. And even just give them, again that encouragement that they’re doing such a good job. This is critical and this is such an important moment that we need to, we need to make change. There are millions of people that are what you call unpaid caregivers in the United States. And I have to tell you that this is only going to get worse. I wanna share with you, and not to alarm anyone, but I’ve been calling a elder care crisis for decades. It is only gonna get worse because we have an aging population that we have never seen before, and we have at the same time that we have a population that’s aging.
We have a medical system that’s breaking down. So caregiver syndrome is now something that is real, it’s being noted, acknowledged, but we also know that it’s going to get worse before it gets better. So what can we do to put things in place? We have got to create resources and ways that we can help family caregivers so that they don’t fall into a victim of being, um, a victim themselves in caregiver syndrome, we at doula givers have put together a caregiver checklist. So we want to put together really easy tools that you can use that will help you to navigate this space. And one of them is identifying what is the caregiver need. You know, many times I, I understand that it’s the person that’s having the end of life, that is the focus and rightly so, but I also want us to know that that main caregiver is equally going through the intensity.
It’s different, but they’ve walked this journey with that loved one and it’s equally as tense, intense, except for nobody’s taking care of the caregiver who’s taking care of you, and what tools do we need for you. So we’ve put together a caregiver checklist and I’m gonna share with you a few of those items because it’s really simple and there’s some really easy things in there that you can use right away. And you can start right now that you can change the experience that you’re having caring for your loved one in the healthiest best way possible. So the caregiver checklist is going to talk to you about a few very important things that you can do. Number one, it’s gonna talk to you about self-care and it’s gonna talk to you about how self-care is not selfish. Look, I understand this a hundred percent and I also wanna call myself out because as a hospice nurse, when I was, I had 14, 12 to 14 patients at a time and I was running all over the county trying to be with each family as much as possible, working hours that I wasn’t even paid for.
And I’d always say to myself that you have to get to you, you can get to you later. These people are dying. And, and there’s a truth in that. And I knew that I was pushing myself past my physical limits, my mental limits. I was, I was saying to myself literally, you know, this family, their loved ones dying and you have to put your needs, Suzanne last. And what happened is you end up getting sick, you end up throwing your back out, you end up having issues because it doesn’t work that way. And your body and your holistic beautiful being can only go so far before it’s going to absolutely break down itself. So caregivers understanding that self-care and these wonderful tools that we have for you can be done within five minutes, but it can’t be optional because so many caregivers get sick when they’re caring for somebody else.
So the first thing that I wanna say to you is that self-care, when you take care of yourself, you are taking care of your loved one. So I really want you embody that because when you are doing self-care, you are filling up your cup, you are making sure that your needs are being met physically, emotionally, and, and, um, mentally, and that when you are full, you can present and show up as the best version of yourself. When you are full, you have more to give. So when you care for yourself, you’re caring for your loved one because you’re showing up as your best version of yourself. Self-care is not selfish. And again, I used to think that back in the day and then I learned the hard way is that I don’t have time for me. I have to make sure that I’m there for all my patients and their families.
They need me first, but at a certain point I got sick and I got, and I suffered and then I couldn’t help anybody, right? So you have to make sure that you understand that it’s not selfish and that you can do things with five minutes with little things of five minutes. The second thing you want to know, there’s a technique that I teach about checking in with yourself and asking yourself, how am I doing? How am I doing? Really being really honest. And I take you through your holistic four bodies of energy that you are as a holistic being. How are you doing physically? Really, how are you doing emotionally? Really, how are you doing mentally? And how are you doing spiritually and doing this daily self check-in? Because when we do that and I say, Ooh, you know, yes, I, I’m feeling really exhausted, or my shoulders and neck are feeling really tight.
You can get the care that you need and you can identify what’s going on in your beautiful body, get yourself some care that you need, some downtime that you need before it becomes a crisis situation. And then another tool is I’m gonna ask you how do you feel and how much do you feel that you are a confident caregiver? It is so stressful to take care of somebody that we love at the end of life, but we know we want to do it and we know we’re gonna be called to do it. But how confident are you in that care? Because when we are in that space, the change that this can make from having it be a positive end of life to one that’s not is how empowered you are. Do you know how to do this care? And how confident do you feel with these skills?
So I wanna ask you how confident you feel and the time to learn these skills ideally is before we ever get there, is before we’re called. Why? Because when we’re faced with somebody at the end of life, fear is always gonna be present. And when we’re fearful, we really can’t learn, absorb teaching. So having these skills in our back pocket so that we know them and we can explore them and ask questions while we’re learning them in a safe space can again just make the learning so profound and so much better. And then we know that when we get there, we have these tools ready. So, so asking yourself, how confident are you as an end of life caregiver? And then there’s another tool that I wanna share is making life easier and getting support that you need. So there’s support out there. We have developed a beautiful family caregiver support groups, um, communities that will support you in just that beautiful presence being present for you.
Sharing tools that work, um, giving again, practical insight and again, just listening, really listening to what you’re going through and showing up for one another. And then there’s a tool that we’ve heard from many fam families that has been a game changer. It’s called Caring Bridge. And Caring Bridge is a tool that you can use. And it’s wonderful because the main caregiver can set up a Caring Bridge account. They can put post the what’s going on to keep people abreast of what’s actually happening in that end of life. So you don’t find yourself on 12 different phone calls and answering 20 different emails and texting people because people are good and they wanna know what’s happening and they wanna know how they can help. But that can be a little chaotic in and of itself. So when you have it in one place, you say it one time, you can also post your needs.
Maybe you have needs that for respite care or for errands or for whatever it may be. You can post it there and people in your community and your loved ones can actually sign up to help support you in this end of life journey without it being hectic or, or another task of burden that you have to do. It’s all in one place. So if you would like to get the self-care checklist, it is downloadable and available. Now you can click the link in the show notes below or you can also go to doula givers.com because it will have your full resource center there with all of the things that are again supporting you with community support, the education to learn to care for somebody at the end of life. Your monthly death, death talk q and as, your monthly life cafes that you can join.
There is so much support out there for you as a caregiver to navigate this end of life space. You are not alone. You do not need to do this alone. And again, there’s plenty of resources to help you. So today we are focusing on care for the caregiver. We talked about something that’s happening right now called caregiver syndrome. And this caregiver syndrome is only gonna get worse. We have got to put things in place as far as free resources and things that people can use so that they don’t fall into being an actual victim themselves, A patient themselves being brought right down, right next to the person they’re caring for because it happens all the time. So I wanna share with you that one of the most important things you can do is be a confident caregiver. And the way that you can learn to take care of somebody at the end of life is by taking the end of life doula training for family caregivers.
And we have World Training Day that is on April 20th at 7:00 PM Eastern Time. That is gonna be a live event. It is gonna be with people from all around the world. And we have a very special guest, Ken Ross. He is the son of Dr. Elizabeth Kubler Ross, who in my opinion is the original death doula. And he’s gonna be sharing stories from his mother’s, travels around the world and working with people around the world at the end of life and, and again, sharing how similar we are. No matter where we are in the world. End of life is our greatest teacher in this humanity that we’re all connected. And then he’s gonna tell us what his institute is doing now and the foundation is doing now. And we are going to go into on world training day,
Speaker 3 (26:43):
End of life caregiver training. We’re gonna go through the three phases of end of life, the shock phase, stabilization phase, and the transition phase. I’m gonna share with you interventions to use in each one of those phases. And people who’ve taken this training have shared three major takeaways. Number one, they have been empowered to know how to care for those at the end of life. Number two, they have been inspired about living cuz you’re gonna hear real bedside stories from those who are leaving this world what they want you to know so you can make it the best life possible. And number three, and this was a surprise to me, people who attend that training talk about how it has helped to heal their grief. This is why we give this training every single year, every single month. We do versions of this everywhere. Why?
And we give it for free. Because end of life and a positive end of life should not be a privilege. It is a human right. And when you know how to care for somebody at the end of life ahead of time, it has changed that experience to be better by 80 to 90% no matter what the disease process has been. So again, I want you to join us on April 20th, and please would you please share this with three, at least three of your friends. This is how we change the world. This is how we come together, and this is how we change the life of every single person in it by showing up no matter where we are in the world. So again, I’m inviting you to join us on April 20th for the Fifth Annual World Training Day. And again, our special guest, Ken Ross. This has been another episode of ASCA Death Doula with Death Talk. My name is Susan O’Brien. Know again that you do not have to go through end of life caregiving alone, that we are here with you. And that by coming together and by learning the skills and showing up in presence, true presence with no judgment, we can change the world. I wanna thank you so much for being here and I will see you in the next episode.