Rayna Neises: 0:07
Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises, your host, and today I have a special guest Kira Reginaldo. Kira is a geriatric care manager and has owned her own firm in Northern California since 2007. She has served thousands of older adults and their families in a variety of settings, including hospitals, residential care homes, skilled nursing facilities, hospice companies, and Alzheimer’s adult daycare program and meals on wheels. Kira is an entrepreneur. She was a radio host for five years, interviewing guests focused on aging and caregiving issues. Free podcasts from those shows can be found on her website CallKira.com. She also helped develop an app for family caregivers called The Caring App. The app answers 107 commonly asked caregiver questions and provides a platform for keeping track of multiple aspects of an older adult’s life. She just released the new edition of her book Tips for Helping Your Aging Parents: without losing your mind. So good to have you today care.

Kira Reginato: 1:14

Thank you. Very happy to be here.

Rayna Neises: 1:17

I just wanted to say, I just love your book. I love that it is very practical. It is bite-size for caregivers to be able to just jump in and find the things that they’re really needing help with. And the format is just so easy to pick up and use as a resource. So thank you for providing that I know as a former caregiver, finding those resources can be such a challenge.

Kira Reginato: 1:41

You’re saying that I worked so hard on this book and so hard to redo this new edition. And it’s exactly what I wanted a quick resource to tuck into your bag, to pull out. If you were even in the emergency room, you could read it or a doctor’s office. Just something with practical tips, I’m a very practical kind of gal. I don’t want any airy fairy stuff. I want to put, you know, people either want a 300-page book. You’re never going to read that. You know, you love your parents, but you don’t want to do that usually. But I just thought something people can get in and out of get some answers and moves on with their day.

Rayna Neises: 2:19

Well, you did a great job. I love that. So I’m really excited to be able to talk with you about advanced directives because from reading your book, you can break those things down and really help us make sense of that. So tell us a little bit about advanced directives and what we need to know.

Kira Reginato: 2:36

Yeah, I love this topic. I worked for two hospice companies and everybody knew what an advanced directive was there, but general population, unless you’ve done a trust and met with an attorney, you may not know what it is. But it’s honestly just a form where you can do two things. One is you can appoint a person to speak for you about medical decisions in the event, you can’t. Been in a car accident or you’re in a coma, et cetera. And the other is the form allows you to write down instructions about your specific health care wishes. Based on your values, your preferences, sort of the, what I want and that’s it. It doesn’t have to be done in a lawyer’s office. You can get a free form and I’ll be telling you the websites for that. And you just basically appoint a person who becomes what they call your power of attorney. So they can make medical decisions for you in the event you can’t, and you write down your healthcare wishes, what do you want? What do you definitely not want? And that’s it. These are healthcare documents. They don’t include anything about finances or business concerns, but they’re really useful and important to complete before a health crisis. Before you might be unable to speak for yourself, especially in this time of COVID.

Rayna Neises: 4:00

So as we’re considering this time of COVID like you said, there’s so much unknown. So why specifically is it important for us to not only have these necessarily for our parents but maybe even for ourselves.

Kira Reginato: 4:14

Absolutely. I say in my book, as soon as you’re over 18, I made my own daughter do one. I think the main reason to have one is so that you’re not having things done to you in terms of treatment or saving your life if those aren’t congruent with what your wishes are. I know I’ve heard that hospitals are scrambling to get this form completed now, before a person comes in. So when they come in, they’re trying to have them fill it out if they don’t already have it, because COVID is such a specific illness and has a certain trajectory that they’re trying to treat. And there are some things that you may not want done, or there may be things that you want done. And, the hospitals always err on the side of caution. So if you come in without an advanced directive, you don’t have anyone to speak for you and you can’t speak for yourself. They’re going to do pretty much everything they can to save you. That is what they do. And if you’re an elderly person, and on Medicare, which is the health insurance program for elderly, Medicare spends nearly 30% of its annual budget on beneficiaries in their final year of life. And I’m here to tell you, after spending a lot of time with older adults and their families, a lot of times that money is spent on procedures and tests that people do not want in the first place. But unless there’s a healthcare agent there to say, my mom doesn’t want that surgery and I have the power to stop it from happening. or, I don’t want her hooked up to a ventilator or a feeding tube, unless you’ve got that you’ve got to be able to say it for yourself. Otherwise the hospital’s going to do everything they can, I can to save you. there’s been a lot of cases in the news about this just to prickly, but certainly with COVID it’s been more relevant and there is actually something called a COVID addendum, COVID-19 addendum. And I actually got it and filled it out myself. It only took me about 10 minutes. I already have my Advanced Healthcare Directive. but this was an addendum about what do you want to have happen in the event you’re positive and you’re coming into a hospital setting and, it’s just a tool page form. But one of the questions that I thought was sort of what I’ve been talking about with my friends that said, when you get to the hospital, do you want healthcare providers to only treat you with noninvasive options that could save your life? Such as oxygen through a face mask or nasal mask and anything necessary to keep you comfortable and control your symptoms. Or do you want to be put on a ventilator if that becomes necessary to save your life? And I think since we know many patients who end up in the hospital, not just resolving COVID at home, go on a ventilator and about almost 36% of those pass away anyway, nowadays, it’s good to think about this. Do I want to ventilator when I’m in the hospital or do I not? And if I’m on a vent, how long a trial might, I want that to happen? So I’ve added this addendum to my advanced healthcare directive and I’ve shared it with my main agent. And it’s also in my phone on the caring app. So I’m covered, I have my wishes written and of course I hope I don’t get COVID and hope it don’t go to the hospital. But if I do they know the specifics pick actions that I would want, if I can’t tell them in the moment when I’m in that hospital.

Rayna Neises: 7:44

I love that because one of the things that I think is so difficult with an Advanced Directive is there’s so many scenarios as a nonmedical person, I don’t even know what I want. And so the fact that it asked those specific of questions helps you really wrap your mind around it and say, okay, yes, I want this. And no, I don’t want that. Or I want this for a short period of time, you know, I think that’s part of the thing that’s a little bit intimidating about an advanced directive is if I just say, I don’t want lifesaving measures, then you’re going to just let me die from,like I don’t know, cut my toe off. Just something small.

Kira Reginato: 8:23

Right,

Rayna Neises: 8:23

right. You know, just really understanding. It can be a little intimidating at times.

Kira Reginato: 8:30

I think that’s why people put off doing it Rayna. And I also think they think if they fill it out, they’re going to die. But I’m here to tell you, I filled mine out about 20 years ago, still not dead. And just like, if you think you buy a lottery ticket, you’re gonna win. Hello? How many lotto tickets have you bought and not when you know there’s no, just because we do something doesn’t cause action. So I think it’s important to fill these out and it’s just in case. I mean, if I enter the hospital and I can speak for myself, my best friend who I appointed to be, my agent is never going to be asked her opinion. It doesn’t matter. I reigned Supreme. I speak for myself, but in the event, I can’t. I’ve written down wishes. And I wanted to say you know, when people are thinking about who they choose, you have to choose someone to speak for you. As I said, I nominated a friend and then another good friend and as backup, because we’re speaking about these sort of cases we see in the news and chit chatting about what we would and wouldn’t want done. So they’re really well equipped if I ended up at the bedside to speak for me because we’ve already talked about it sort of offline, if you will. Yes. It’s documented, but that conversation’s really, what’s going to be probably something they remember. Initially I asked my mom if she’d be my agent, because she was a nurse. And she said, Oh honey, I love you. I would have a really hard time, making those kinds of decisions for you. I mean, I’d be happy to weigh in, but I wouldn’t want all that responsibility. And I was like, Oh, I just assumed since you’re my mom and you love me, you do it. And she said, can you name somebody else? And I said, Oh yeah, And I remember when I was married, I was talking with my husband about how long I wanted to be on a ventilator. And if I were brain dead or this or that, and he basically said, I love you. I’m not taking off of life support. I E I’m not going to honor your wishes. I’ll just come to the hospital and sit beside you every day for the next 30 years. So I thought, well, that’s not a good agent, so yes, he could have become the agent for me, but I chose not to nominate him because I knew just like my mom, it would be too painful to do the hard stuff. So when you name an agent, you really have to think about who could speak up to the medical staff on my behalf, even if they had to argue, if you will about honoring my wishes.

Rayna Neises: 11:01

That’s a really good point and one that we probably don’t think much about. We often just immediately go to the closest family member, because that seems to make sense. But like you said, being in that place of having to make those decisions, I lost my mom to Alzheimer’s when I was 28 years old. And when I look back on that season, it was so difficult. Just even being a part of the conversations of what lifesaving measures we’re in what we could give her and what we couldn’t give her at the end of her life. I’m so thankful. I didn’t have to be the ones completely responsible for those decisions because it’s difficult. There’s so much happening emotionally in the moment. They’re tough choices. So it, number one, having it written down makes all the difference so that you can say. I know this is what she wanted, but then having somebody that would not necessarily be that emotionally tied to the situation makes a lot of sense.

Kira Reginato: 12:02

Yeah, I think people don’t often think of that. I want to let people know how they get a form. I think when people think that about illegal form they get all flustered and think it’s going to cost them of dollars. If they’ve done it trust to avoid the estate going through the court system and what that costs, avoiding probate. They have probably done advanced care planning and they’ve probably nominated someone to be their agent and written down their healthcare wishes. In the event. You just want to do this piecemeal. Many hospitals can give you the forms or you can go online and download a form and fill it out. Some States like where I am in California, we have to have two people who are not related to us by blood or marriage witness it, or we can take it to a notary and pay the fee to have our signature witnessed. You get one or the other. But recently my mom wanted to redo her, advanced directive and she lives in Idaho. So when I looked at the Idaho statutes and pulled the form for her, that was appropriate for Idaho, it actually doesn’t require anybody to witness it or a notary. The person just fills it out and it’s good to go as it is. So when you go to these websites to download a form, again, it’s usually free to do you have to choose the one that’s right for your state. And then it’ll tell you whether it requires being witnessed or not. But in as far as I know, there’s no attorney that needs to be involved at all. It’s just a matter of the form being witnessed once you complete it or notarized or nothing. If your state requires nothing. So I’ll give out those websites Rayna if you’d like, okay. So one of the places as get hospital may have the form, but another place you could go to get one is called Fivewishes.org. There’s another place called coalition, CCC.org. There’s compassionandchoices.org. And that is with the word and spelled out compassion and choices.org. And then there is an abbreviated website. It’s NHPCO.org. And any of those websites, you can download the form for your state and begin to, complete it. And, that’s also listed in my book. I have a whole chapter on advanced healthcare directives. And actually, if your listeners go to my website CallKira.com. They can click on free and put in their email address. And I will send them a chapter, chapter six at An Advanced Healthcare Directive for free as my gift to them. So they will have the whole chapter about how to do this at their fingertips.

Rayna Neises: 15:11

That’s amazing. I appreciate you sharing those resources as well as being willing to give that chapter, listeners take advantage of that. Again, CallKira.com and under the free, and be able to get that chapter six. I definitely recommend taking advantage of that offer.

Kira Reginato: 15:28

I also have the COVID addendum on my website as well. And that’s under COVID-19 resources. People can download that form from my website site for free. Also again, it’s just CallKira.com C a L L K I R A.com. So honestly, one visit to my website. They can get two things and, you know, be well on their way to filling out the Advanced Directive.

Rayna Neises: 15:54

It’s amazing. So once we get that form, what do we do with it?

Kira Reginato: 16:00

Yes, that’s a really good question. Well, you keep the original. And then you give copies to your agent because there’s usually someone whom you’ve nominated to be your power of attorney. And then someone who’s the backup agent. I suggest people give a copy to their doctor so it goes in their medical chart. And, bring it to the hospital where they’re most likely to be admitted so that it can be entered into their electronic medical records. And I also suggest just, if people have sort of a grab and go bag in case they are, swept out, you know, with an ambulance because of a medical emergency, they can put their, a copy of the form in there too, or in this time of COVID, if you’re nervous, you might even want to put the advanced directive right on your refrigerators because the EMTs, are trained to look there for legal documents and they can grab it and bring it in the ambulance and know what your wishes are.

Rayna Neises: 17:02

That’s great. And then you mentioned the app, did you say that you also have yours in your phone?

Kira Reginato: 17:08

I do. Yeah. So The Caring App is a place where I’ve put a bunch of information about my clients, myself. My mom. so when I did my advanced degree, I took pictures of it and put it into The Caring App and the I’m the only, you know, it’s, completely encrypted. And that way I have access to it on my phone and I can actually share the app for free, with my data, to my agents. And then they would be able to access it on their phone and there’s information. If people are wanting to carry data with them about their loved one in their phone, The Caring App is fabulous as a resource. and that information is on my website about The Caring App as well.

Rayna Neises: 17:51

That sounds amazing. I know, as we were journeying with my dad, it seemed like every time, even when you went to the same doctor, the same hospital, they were asking you for the same things over and over. So it’s nice to have that electronically available so that you can, we had a huge bag full of a lot of things, but it would be nice to have some of that right there at your fingertips, especially like I said, your own, because you never know when you’re going to need something like that.

Kira Reginato: 18:17

Exactly. That’s exactly why we created the app. We figured people don’t want to be carrying around documents with them. I carried my dad’s binder before I worked on the app in the back of my car. So that if he ended up at the VA or he ended up at our local hospital, I just carried the whole binder with me. And now I don’t have to do that. I just always have my cell phone and I can just pull up any data and I don’t need to go have any hard copy anymore. So I like that.

Rayna Neises: 18:43

Sounds really handy. My sister had the notebook and I had to borrow it anytime I needed it. It’s good to be able to have it where you could share like that.

Kira Reginato: 18:51

Yeah. That’s the perfect reason you want the app is that your sister would have put it all in and then shared it and you both would have had it on your cell phone. It’s an amazing, amazing piece of technology right now for families that are caregiving to use. One thing I think I wanted to say is that the advanced directive that I do today can be torn up and I can do another one tomorrow. I want to let people know that, you know, right now I don’t have. A critical illness right now. I am not sick. So what I want done and what’s in there, my advanced directive may look very different if I come down with cancer or Multiple Sclerosis or, something happens to me and I get to change my advanced directive. I can change my power of attorney that I’ve nominated. I get to do that just with tearing up the old document and making a new one. So it’s not like once I put it on paper, I can’t change my mind. I can always change my mind. And part of the reason I might change my mind, Rayna, is that my agent moves. Right. So if I’m admitted to the hospital and I have my agent close by and she can be at the bedside to advocate for me, but she moves to Florida. I’m going to want to choose a new agent because I want someone local who can be there for me. So there’s all sorts of reasons that we update or our advanced directives and that’s fine to do. What I would suggest though, when you’re done with your form is that you have a communication sit down with your agents when you give them copies. So that they hear how sincere you are about what you do and don’t want done. A friend of mine is very non-religious and said, you know, when you’re checking off the boxes, one of them says, pray for me. If I can’t speak for myself and you’re around me, this are some of my wishes. And she said, I definitely, we don’t want anyone praying around my bedside. And we said, okay. And then I have another friend who’s extremely religious and faith-based and said, I’m marking the box. Yes, definitely pray for me. The more people we can get in the room around me holding hands and praying better. So you get to write down what you want. What’s important to you in this advanced directive. And then we, as the people who love you, who are reading it, know how to instruct the group that. May or may not be coming to the hospital to, be there for you. What I did too, is I shot a little video on my phone recapping in my own voice, what I did and didn’t want done, people could hear how emphatic or how wishy washy I was. So that if they’re in a position to acting on my behalf, they have this video, that they could look at and refer to. Sorry, I didn’t say that well, but I think you should do it. The person who’s listening to, you should shoot a video on their phone that they can refer to. If times get tough and they need to sort of be reminded in your own voice, what your wishes were. Does that make sense?

Rayna Neises: 21:57

It does. And I think that’s so important because most of the time at the end of our journey, we’re not able to communicate. And those decisions are difficult and letting go is difficult. And having that opportunity to see and hear the person that you love again, tell you what’s important to them. It could be a very valuable gift.

Kira Reginato: 22:20

That’s very well said. That was much better than I did. Thank you. Yes, that’s what I want to share. And you know, what’s really cool now is that Medicare is reimbursing doctors. For a 30 minute session of advanced care planning. That’s what this is called. So that 30 minutes session could include having a conversation like before an illness progresses or even during the course of treatment. So the doctor could kind of talk with you about filling out this document and maybe more specifically, like if you had a brain tumor, you might have different questions than if you had MS. Right. So your doctor can be now reimbursed by Medicare for 30 minutes to help you figure out how you might want to fill out your form. And I’ll tell you, historically, doctors did not want to talk about this stuff because it took up a lot of time in the office. Anything regarding end of life can, and frankly, they weren’t getting paid. So you burst into tears, your mom is upset and he’s got these people in the office and he’s trying to calm down or she’s trying to calm down. And there’s the waiting room building up with patients and they’re not even getting paid. So I don’t mean to be cynical, but I’m really glad that Medicare finally recognized. Yeah, we’re going to pay the doctor to spend 30 minutes to have these conversations with family so that they can fill out these documents and ask these kinds of questions, not just get treated for their skin condition and be on their way.

Rayna Neises: 23:52

So helpful because there is so much involved depending on the type of illness that you’re struggling with. That really can give your family true picture of what you want. If you don’t realize what’s coming, then you don’t really know, what to address even in the Advanced Directive.

Well, listeners, I hope that as you are thinking about what you’ve heard today, that you will make some action steps and the first one would be to visit callkira.com and check out those free resources. Get your chapter six, take a look at your COVID. 19 addendum and get your Advanced Directive taken care of for you and for your loved one such important information. I love that reinforcing it’s something that needs to be revisited as life changes and it’s. Definitely only as permanent as you want it to be. So it’s something you can change and address new issues as you have them, or just as we age things change so, important reminder, to do that. If you already have an advanced directive, make sure it’s updated, make sure you have your agent is chosen with wisdom and thought about where they’re located and whether or not they’re the best person to be speaking for you. Kira is so many great things that we’re walking away with today. I just appreciate your time so much.

Kira Reginato: 25:12

Thank you so much for having me, this is one of my favorite topics. Fill out your forms everybody don’t wait. Don’t delay. Be the cool kid on the block with your Advanced Directive completed.

Rayna Neises: 25:25

I love that, that’s great. Listeners, thank you for joining us today.

And just a reminder A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, be sure to consult your local professionals and take heart in your season of caring.