Speaker 1 (00:00):

Thank you so much everyone, for being part of, again, ask a Death Doula podcast. Remember that 80 to 90% of a positive end of life depends on two things. Planning ahead and having the basic skills on how to care for someone you love at the end of life. And both of those are available for free with Doula Givers Institute. You can go to the show notes right now and click the link to download either the training or the nine choices document or go to doula givers.com. Thank you so much everyone, and we’ll send you in the next episode.

(00:38):

Hi everyone, and welcome to this episode of Ask AEP doula. It is going to be a heart-centered, beautiful conversation. We have Kathy Yusof, and let me just explain that Kathy, I’ve been watching Kathy within our groups and things. She posts on social. She is an amazing person. I heard her story that she actually shared about her own personal experience with end of life with her family, and it just struck me in so many different ways for so many different reasons. And I thought what a value it can be for others to hear her story and then also to know again what you can do as a family caregiver or for someone you love at the end of life that’s not available out there in the world right now. And that’s the biggest misconception about end of life is that a lot of us think that hospice just will come in and be there all the time and fix everything, and that’s not really the reality. So there’s never any judgment here, but from a heart to heart conversation that can benefit everyone, we want to have that with you. So welcome, Kathy. I’m so glad you’re

Speaker 2 (01:42):

Here. Thank you so much. I’m so honored to be here.

Speaker 1 (01:46):

Well, it is my honor. So again, like I said, I’ve been watching and you’ve been coming to some of the groups and sharing things and you’ve always just moved me with what you have shared and I said, okay, I’ve got to get Kathy on a podcast and have her share her story because if I may, I want to ask you about what your actual background is. You are registered nurse and you do have hospice experience. Yes,

Speaker 2 (02:10):

Yes. I’ve been a nurse for, it’ll be almost 35 years coming next June. And it’s funny because I’ve always sort of split my loves in nursing, so many opportunities in nursing between home care and hospice and surgery, which is the total opposite. But I do have experience in ICU and er and I’ve experienced many people dying on that end of it. And so what I love about the difference of it is that the dying in the hospital is totally stressful and chaotic and dying in hospice can be the most sacred experience that someone can have. And that’s where I started to. So I was living in Arizona at the time and I was doing home care and I think my first introduction to hospice was a woman that was my home care patient. She said to me one day, I don’t want to do this anymore.

(03:09):

I’m tired of taking pills and I’ve done everything I want to do. There’s nothing left for me here. I said, well, you don’t have to. And she said, I don’t. I said, well, no. And I explained the hospice philosophy to her and she thought about it for a minute and she said, well, I’m ready for the next adventure. So I got her hooked up with hospice, but she didn’t have any family at that time and the hospice was located, oh, easily 40 minutes away. So it was just her power of attorney, myself and the physical therapy from the home care agency. And we just spent our time with her, took care. I gave them respite on the weekend evenings so they could spend time with their family. And then I was getting ready to leave one night and I looked over and I said, something has changed. And so we all gathered, we read to her from this book called When I Get to the Other Side, which I’ve never been able to find again, I wish I could, but we all took turns reading chapters and she died peacefully. And it was the most sacred experience I’ve ever had in my life. And I said, this is how everybody should die just like this.

Speaker 1 (04:20):

There’s so much that we can go with this, so let’s really break it down for people because I always believed that there’s no accidents in life ever, and there really aren’t. So the fact that you were ICU and that you have that experience and really saw the way that a lot of people are dying today and grasping at straws and actually, and I talk about this and there’s never a judgment with what we talk about, but the point is we need to talk about it when we don’t bring in the awareness that death will be a part of our journey and a natural one at that. It goes into what I call default and default is the ICU and default is the emergency room and default is doing procedures and medications and things to extend life. When I want to say from a healthcare perspective, there is a fine line between when something is helpful and when something is harmful.

(05:13):

However, it’s for me to decide as a human being, just like you did for that woman and said, you don’t have to. She goes, I don’t have to do this. People don’t know there’s another option. And so we want to share about hospice is a beautiful model of care, it’s a holistic model and it’s about living every single day holistically to as many days as we have. And by the way, that’s what we should bring into our world now, not just wait for end of life, but I think that’s critically important. And then you shared that it was the most sacred, beautiful experience, and I will say this and I agree with you Kathy, is that when you’re part of a positive end of life experience, it changes you forever in the best way possible. I love that. Now for you and I as educators in this space and doula givers and doing this work, this is such a pivotal moment for education because just like that one beautiful woman that you served and said, you don’t have to, there’s other choices.

(06:15):

The world needs to know about these other choices. And now we do have a little bit of something that’s going on, which we’ll talk about that there are gaps in, and again, no judgment here, but we need to know where we’re coming from, where we are now to know where we want to go. And hospice is a beautiful model of care, but there are gaps in the system because of the reimbursement structure. So we really want to share with people what those gaps are and how they can fill ’em so they can have that perfect end of life. So I love that. And then once you had that experience, what did you do next? Did you start to work now end of life? Is that where your path brought you?

Speaker 2 (06:54):

I dipped my toes in the water at first. So I found an agency and I was able to not work for a while while I was in Arizona and I started out with an agency as just an admissions nurse. So that’s all I did was go in and explain the philosophy. Hopefully they would see that they could benefit from it. And then I did their care plans and attended IDT meetings and that was about it. And then when I moved back to Connecticut again, I’ve always had this pull and I did get involved with a hospice agency and it was exhausting. And I was working till eight o’clock at night taking phone calls and charting. And finally my significant other at the time now husband said, this has got to change. There’s no life. You have no life. And I wasn’t able to see the patients as much as I wanted to see.

(07:48):

I couldn’t spend the time with them. And I also witnessed that same thing while taking care of my father. And this was also post covid that that was happening. And so definitely I felt the gap for myself as a provider. And I feel like although a lot of patients would say, oh, I feel like the weight has been lifted off my shoulders, this agency is here. But I also see a huge difference between what I experienced as a nurse, maybe I want to say that was five or seven years ago to what is happening currently. And there’s a huge difference.

Speaker 1 (08:29):

Huge. Yeah, unfortunately. And so there’s what I call the elements to this perfect storm, so to speak, is that we have an aging population that is growing that we have never seen before in history. So with that, we don’t have the setup for them. And here’s the thing, and again, there’s no judgment, but we really have to know why are we in this moment, what’s available and what we can do to support because we know how to, we’ve made medical advances and that’s a wonderful thing. In the last a hundred years, we’ve taught doctors how to extend life. We haven’t taught them about how to support someone in the natural process, the hundred percent guaranteed experience of end of life. We’ve actually taught them that if their patient dies, they failed. And that is an unfair, completely unfair thing to put on them. But also this removal of seeing death and having it be life be extended has raised this mystery around death.

(09:35):

And if no one’s talking about it and planning for it, and also now it’s the number one fear in the world, how can we possibly have it go well when we don’t know how to care for people that a hundred years ago, a grandmother used to hand this skill down to a grandchild, the beautiful sacredness that Kathy, you started out this podcast sharing about being in the presence of somebody at the end of life that was so profound that it changed you about life. And then let’s talk about your healthcare workers. You just shared it. And I was the same way. Kathy, I remember in the last year of my hospice nursing, they told me they changed policy and they said, I was there in my hospice and they are run very differently, but a lot of it is the same right now. I was there for one hour once a week with my end of life patients and families.

(10:27):

That is not enough. And they told me on that hour visit that I had to flip up my laptop and document and I said, I’m not doing that. These people count on us. What statement is that saying? And they said, okay, you have 24 hours to get in your documentation. So there I was at the kitchen table to one o’clock in the morning killing myself. And I know that all of us medical workers are killing themselves because of the structure. And so there’s got to be answers, not it. So I’m glad that you’re a significant other, said this isn’t working. But then I said to myself, okay, so if the hospice concept, which I want everyone to hear this is that the hospice nurse is supposed to come in, assess the person who’s dying, manage the care and teach the loved ones how to do that care if that’s the model.

(11:21):

And it is, first of all, you can’t do that with one hour once a week. But also what if we taught people that skill before they ever needed it? What if we brought back this education that really, and also at the same time brought back the sacred gifts that this end of life experience teaches us about how to live today? And I’m happy to say, Kathy, that you and I are doing that in our work that we do, which we’ll talk about at the end, but it’s based off of seeing these gaps and these end of lifes from practitioners not going well for most of our patients.

Speaker 3 (11:56):

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Speaker 1 (12:26):

And families. Would you agree on that?

Speaker 2 (12:28):

Absolutely. Absolutely.

Speaker 1 (12:30):

Yeah.

(12:31):

So I love that. The other thing that we’re going to talk about next if we could is, and I know that you and I try because I can see there’s a twin flame here, but I can see that we’re working after hours, not being paid for it. We’re at the kitchen table documenting at night. We’re trying to be with our patients as much as we can and we’re still not meeting the mark because it’s impossible because of the late time people come on and they don’t have any prior experience with end of life or understanding and they’re fearful. And when people are fearful, you can’t even teach them. There’s a block there. So we both were called to a bigger picture of how can we make this change? And now if we can switch to your own personal end of life experience, I want people to understand that even as medical practitioners with knowledge, sometimes it doesn’t go as well as it can go or how we expected it. So would you be so kind to share with us all your own personal family journey with end of life, what that was like and what we need to do to put things in place so that it can go better for people in the future?

Speaker 2 (13:41):

I’d be happy to. Luckily I was still in the end part of getting my doula certification. So before he passed, I was able to do things like talk about advanced directives and update them, talk with his doctors. I got an actual mosts done for him, the medical order of life sustaining treatment, and his doctor was just astounded. He didn’t even know what it was.

Speaker 1 (14:12):

One second hold. So AM form is a medical order for life sustaining treatment and it’s a medical legally binding order. And are you telling me the doctor didn’t even know what AOL score was?

Speaker 2 (14:25):

I guess so he’s a family practitioner and I guess it doesn’t come across his desk very.

Speaker 1 (14:31):

And that’s okay. I’m not judging. I just had to make sure we are hearing that clearly. Yeah, he

Speaker 2 (14:34):

Didn’t. And then I explained it. I said, because if I don’t want my brother who was sort of staying with my dad to be calling 9 1 1 and having somebody coming in and compressing his chest and cracking his ribs. So he agreed to do that. So we had that and I did the little packet on the fridge, the whole thing. And then there came a time finally when I was able to get everybody on board and my dad on board that, oh, I know what it was my dad contracted and that was actually the cause of his death. So he got covid and then my brother said, let’s ship him to the hospital. And I said, do you understand that if we do that we’ll never see him? They’re not going to let us in there to see him. This is going to be your last memory of that. I said, I had a long conversation with my dad. I had it all written down. He wanted to be home. So finally I found a geriatric doctor who was willing to provide home visits. He used to actually be the director of hospice where I worked, and somehow he managed to get a diagnosis that he could be on hospice. And so we got that hooked up and it was days before anybody could even get out there.

(15:57):

And the poor hospice nurse, she had to come to his admission at six 30 at night and she lived far away. And then when we went to have services, she came once a week. We never had a call saying when she was going to come. I mean when I did it, I let my patients know, I’m going to see you on Tuesday, I’ll call you in the morning to let you know about what time that never happened. He was lucky to get, he was on hospice services for a little over nine days and got two certified nursing assistant visits to bathe him too. And I don’t know whether people were afraid or they’d call in sick because he had covid at this point. He was sort of beyond his incubation period. So that was horrible. And then social workers and the chaplain came and said they would make repeat visits.

(16:55):

They never came back. They never even called to check up on us. And so it was my sister and I. My brother was unable to come downstairs and go through that process. But my sister, who’s also a nurse, we stayed with him 24 7, took turns sleeping on the couch with him. And I thought at that moment, oh my God, if I’m having this kind of anxiety about what to do, it really put me the shoes on the other foot of what patients are going through when they’re on hospice services and when should I call? And so that was my experience with that. And in the end, it was my sister and I who figured out that he needed a Foley catheter because he was having urinary retention. But a person who’s not in the medical field, they would never figure that out. And we were giving him morphine every hour on the hour until we finally got him to a place where he settled down, but it wasn’t until the catheter that he just settled down. So I feel so bad for people, and I also know that not everybody has that experience and some people do have very nice and quick and easy passings, but yeah,

Speaker 1 (18:11):

We know that a hundred percent end of life is guaranteed not only for us, but for those we love. We also know that 80 to 90% of a positive end of life can be achieved no matter what the disease process is with these two things, having the basic skills of understanding how to care for someone we love at the end of life, which 98% of the care falls on the family caregiver. And number two, planning ahead, choosing what we would want or not want for end of life care. And both of those are available to you right now for free. Go to the show notes right now and you can download the nine choices document and you can have on download the level one training. We want everyone to have the resources to be able to have a positive end of life experience for everyone in this world.

(19:01):

Doula Givers Institute will give you everything you need to be able to do that. You can go to doula givers.com or go to the show notes and download those trainings now. Thanks everyone. And we want to have that go as well as it can. And when Kathy started with the story, that woman that she was caring for, it was absolutely beautiful. And I can attest to that end of life will be a hundred percent guaranteed and it can go well, really well with the right education and support. And that’s what we’re wanting to do here is get this out into the world. And so knowing that the gaps within mainstream medical and hospice, we’ve got to fill those gaps and we’ve got to know what we can do to support people. And I’ll tell you the best time to start thinking about this is beforehand, before we’re ever there because it’s very hard once we’re in it.

(19:49):

So Kathy, that is heartbreaking to hear. Also, I believe that Connecticut was the first United States where hospice started. So that’s another sad thing to hear, but this is not uncommon. In fact, I hear from many people that they never got an aid at all. They never got the comfort kit. They don’t know how to use it. And this is pivotally important because this is somebody with experience and that it still was very challenging. So like you said, thinking about what patients and families must be feeling without having any knowledge or background, it’s pretty awful. And then that person dies. And I honestly believe that’s why our grief right now is so traumatic is because you can’t just at the end try and figure it out and you don’t know the things. They don’t go and then the person dies and you’re stuck with that energy because you have no outlet. So we’re going to help to change that. We’ve been on the platform to change that. So when your dad, can I just ask, when he had his end of life, how were you and your family at that time and your brother as well?

Speaker 2 (20:54):

We were okay because I found myself getting caught up in the to-dos and I thought to myself, I need to take off my doula hat and I need to be his daughter.

Speaker 1 (21:09):

I love that.

Speaker 2 (21:10):

And when we did that, and my brother understandably, he had been caring for him a lot. He couldn’t come down and watch the dying process

Speaker 1 (21:19):

And that’s okay, but

Speaker 2 (21:20):

He could make our coffee and go get our Dunking Donuts beautiful in the morning and he made sure we had lunch and he cooks supper. So that was his role and my sister and I, it was really beautiful because we didn’t even have to speak about roles or who should do what. We just stepped in when I knew when she needed a rest or so, we just kind of went through this beautiful dance and we were just sitting there one night and we just looked over and we just knew that was his last breath. In the end, it was extremely peaceful and it was everything that he wanted because I luckily was able to talk to him about how he wanted it to be.

Speaker 1 (22:02):

I love that so much, and this is important to hear as well, is that not everyone is going to be that person that’s right at the bedside giving a medication if you’re not comfortable. But don’t ever have judgment on family members who might not feel comfortable about being at the bedside or it’s okay, everyone can do a role. Just like Hugh shared the coffee and the cooking. That’s a huge thing and huge. We don’t want to ever judge anyone for what they can do or what they’re not comfortable at that moment. We’re all here together and I love it. I think of an orchestra that was working together in this beautiful symphony in love, in support with your dad, and they feel that the person that’s having their end of life, they know how hard this is and they really want it to be a positive experience for you.

(22:48):

You’re all going to remember this obviously forever. So that is really beautiful. Let’s go back because I want people to understand that from a family perspective. In my opinion, and I’ll get your opinion on this too, Kathy, is that there are two things that make end of life 80 to 90% better no matter what the disease process. Number one is doing your advanced directive and you want to take that a step further and not only doing the advanced directive, which would be a choice of what you would want or not want for the end of life, for your end of life, but then making sure you put that in a mols or pulse form because advanced directives are not legally binding. So you want to make sure when it’s appropriate that your loved one has a mols or pulse form because that is a legal medical order. Kathy, how did you know about mols and pulse forms? I’m just curious.

Speaker 2 (23:37):

I learned it at the Doula Givers Institute.

Speaker 1 (23:41):

Okay, thank you. Also,

Speaker 2 (23:43):

What had happened prior to this was we were at a funeral of a relative at the graveside and he passed out and we had to take him to the hospital and I didn’t have his DNR in my pocket. And it turns out he was dehydrated but common. But in the end I thought I need to have that because I don’t want them doing CPR on him and he didn’t want it either. So I did that and then we took it and we put it into the hospital system so everybody would know. And it’s just really important.

Speaker 1 (24:19):

It’s so important. So again, it’s like what I call the doula. Give pearls is AM or pulse form is legally binding. It goes into the system. And so when someone can qualify, they have to have a serious illness. You just transfer all of the choices you’ve already made in those advanced directives into that form, and it has to be followed and it follows through the system. So that’s the one part. And the second part is knowing the basic understanding of what the skills of what it is to care for somebody at the end of life because we’re all going to need those. And even if you’re not somebody who might want to do that and be comfortable at the actual bedside of your mom understanding how the end of life, but just knowing that it’s a natural process not to be afraid or that what you’re seeing is that natural part of the body shutting down.

(25:04):

But most of us will want to use some of those interventions and understanding changes everything and both of these things can be done for free. Your advanced directive and learning, the level one from doula givers is a free course that you can get on demand now, so it’s absolutely free. So Kathy, I want to thank you for sharing your own family story and also now your life has taken a journey from following your heart and your path. And can you tell me what you’re doing now, what that looks like and what you’re offering your community so that you can help with this shift to make end of life better for people all over the world?

Speaker 2 (25:43):

Sure. So I’m sort of semi-retired from professional nursing this year. And I’ve decided that being a doula giver was going to be my retirement plan and that I could take all my 35 years of knowledge and impart it to people. What I find is nobody wants to talk about death. I liken it to when you turn on a light and all the critics go scurrying to the corners. Nobody wants to talk about it. Don’t say that word. I don’t want to talk about it. So I feel like I think my number one thing that I’d like to do is educate people that it’s okay to talk about death. It’s not scary, it’s not going to make you die faster if you talk about it, but how important it is and we’re all going to do it. And I try to stress that once you do get your plans in place, you can just go on and live your life and then not have to have that chaos at the end, which is totally unnecessary.

(26:49):

I’m sort of starting out slow. I have a few clients. One beautiful story is that this person had tried every chemotherapy and I mean to the point of really horrible physical symptoms. And then she decided to go on hospice and is flourishing. She’s more than nine months now and this Friday is going to be her son’s wedding, which she invited me to. And I’m just so excited for her. And who knows, maybe she’ll be around to see her first grandchild, that’s her next goal. But either way, the course that she was on, she would not have been here today if she hadn’t got on hospice. So I love that. In fact, I’m thinking of trying to do, I’m going to ask her if she would like to do a thing with me where she can talk about her experiences and then other people can watch that.

Speaker 1 (27:47):

Let’s stop there if we can for a minute. I think this is so important. I feel like it really encompasses what our platform is and what our messages that we want to share with people is that I never want to tell anyone what they should choose, but I want you to know you have choices and I want you to make informed subjective choices for yourself. And when Kathy, you just described this woman who’s flourishing, I love this so much. I have so many stories. And again, I’m not saying what’s right or wrong. You’re the only one that can decide for yourself, but I want you to know you have choices and I want you to know that there’s questions that you should be asking doctors and finding out so that you can be able to make an informed decision for yourself. Because there is a point in the journey sometimes where no matter what we do, chemotherapy or whatever it is, it’s not going to reverse the process.

(28:44):

And your quality of life may suffer so much that you are not able to have time with your loved ones. And ironically, but maybe not so much, is that people don’t understand chemo kills the bad hopefully, but it also kills your good and it’s a very hard course to endure. And so I know many patients that unfortunately have gone through that and then had their end of life, and I have known other patients who’ve said, I’m going to just go home. I’m going to go home, I’m going to go on hospice, I’m going to garden as much as I can and had better and life more extended quality than the person that chose the other route. And again, not telling anyone what they should choose, but knowing you have choices. And that’s what people like Kathy and myself, were here to share with you what those choices are, what questions you should be asking, and how you should benchmark what quality of life is to you and make it the highest level of quality of life every single day. So I hope you do get this beautiful woman. I’d love to hear from her. I have somebody who shared his journey as well. And you know what? We can share all we want, Kathy, but sometimes when you hear from the person themselves.

Speaker 2 (29:54):

Exactly. Yeah,

Speaker 1 (29:55):

It’s amazing. So how beautiful is that? So great. And what is the name of your business?

Speaker 2 (30:03):

It’s called Dying Matters. And I’m really super happy because I just got my trademark on that there was another Dying Matters in the uk and it all went through and it’s great and I love that. Yeah, dying Matters. I

Speaker 1 (30:18):

Love it. And do you help people do their advanced directives and their planning ahead of time?

Speaker 2 (30:23):

I can if they need that. Yes, absolutely.

Speaker 1 (30:26):

Alright, so I know that this is the next question that people are wondering. How can they get in touch with you if they would like to follow up? Just communicate or even use some of your services?

Speaker 2 (30:35):

Sure. One of the places I spend a lot of time is on my Facebook page because that’s where I love to educate. And ever since I went through the process with my dad, I’ve done a process where I go really inward and listen to the universe and try to find the message that people might need to hear. And so I do a lot there. And I also did go on to get my Grief educator certification too. So I kind of combine grief and dying. I think they go hand in hand obviously. So Facebook, which is, I have to read it, dying Matters ct.

Speaker 1 (31:15):

Okay. And we’ll put a link below.

Speaker 2 (31:17):

Okay. And also I have a website, D Matters llc, and there people can see the kind of things that I do. I have packages, packages of hours, whatever works for somebody. Somebody I recently met with, they already had their advanced directors, they didn’t need that. So I can kind of mix it up and they can determine what their needs are and go from there. And

(31:42):

I wrote a little informational booklet, which I have on Amazon. It’s called Have You Heard Your Dying? So I thought, oh boy, that’s sort of in your face sort of title, but it does get your attention anyway. And so in there I kind of outline my story of my first patient and then I talk about the different components and the things that are important as someone is dying. So it starts out with the forgiveness and the grief aspects of it, having funeral choices because people aren’t even aware. They think they just have to go to the local place. And then what’s that? The end there, forgiveness, grief and comfort measures for patients. So it’s a small booklet, but I’ve got a good review on that. So a lot of people like it.

Speaker 1 (32:37):

Absolutely beautiful, beautiful. Kathy, you have such great things that you share in the world. And again, it all goes back to death is a natural sacred experience and can go so well with the right education and support and planning ahead and learning the basic skills, 80 to 90% is better. And you can do that by reaching out. There’s so much information. We’re going to have Kathy all her information below. So if you would like to follow up with Kathy and I encourage you to follow her on Facebook, just inspiration and love there all the time, and that’s what we need to put so much more out into the world. So Kathy, I want to thank you so much for being a guest on a death, a doula. Thank you for what you’ve done with your journey and how you’ve turned it into using it as a gift to make the world a better place. So thank you from all of us.

Speaker 2 (33:24):

Thank you so much and thank you for all of your inspiration. It’s tireless and I am just so appreciative of that.

Speaker 1 (33:31):

Thank you and thank you all for listening. This was Ask a Death Doula, everyone put your comments below. We’ll be checking them and answering all of them, and I want to thank you for being here on this episode and we’ll see you in the next one. Bye everybody. Bye. Thank you so much everyone, for being part of, again, ask a Death Doula podcast. Remember that 80 to 90% of a positive end of life depends on two things. Planning ahead and having the basic skills on how to care for someone you love at the end of life. And both of those are available for free with Doula Givers Institute. You can go to the show notes right now and click the link to download either the training or the nine choices document or go to doula givers.com. Thank you so much everyone, and we’ll send you in the next episode.