Ep 4 - Beautiful life lessons from a hospice nurse for our parents and ourselves!

Heart warming stories from a retired hospice nurse, plus practical advice for the adult children of seniors. If you don't have time to listen, here are the cliff notes - "Take the Damn Trip"! 

Transcript

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Welcome to the helping our parents thrive podcast. I am Melissa Uppleshoten, your host. I created this podcast to support adult children like me. I'm also a Senior Home Safety Specialist, and at speaking engagements, I realized I was being asked questions on much, much more than home safety, and that is how Hop Thrive was born. I interview experts on topics related to aging, but with a focus on how we, the adult children of seniors, can best support our parents and ourselves. Today, we are digging into lessons from a hospice nurse. You might find it strange that the title of my podcast is Helping Our Parents Thrive, and my first interview is with a hospice nurse. I decided to take Stephen Covey's Habit 2 to heart. Begin with the end in mind. Why not peer into the life of someone who has sat beside the bedside of hundreds of people at end of life and glean what beautiful advice they have. So that is what we are doing. I'm glad you're here. I'm so honored to be interviewing Joni Roberts. I've had the pleasure of meeting Joni as part of the health and wellness program that we are both members of. I was attracted to her wisdom and just. Beautiful spirit. When I found out that she was a retired hospice nurse, I thought that makes total sense. I have a feeling you are going to feel the same love and admiration for Joni after this interview. Let me give you a bit of background on Joni. Joni has always been a West Coast person. She split her time between San Diego, the Pacific Northwest, Hawaii, and Coeur d'Alene, Idaho. She is married with two children and two grandsons. After working years in the school systems in various roles, she decided in 2002 to pursue her lifelong dream of becoming a registered nurse. She absolutely loved it. In 2005, at the age of 48, She became an official RN. Joni found that the end of life care courses brought her the most joy, so she decided to go into hospice care. She worked in hospice for 18 years in both Coeur d'Alene and Hawaii before retiring in 2023. Enjoy the conversation. Joni, it is such an honor to be speaking here with you today, and I just knew that you would be a gifted hospice nurse after hearing the beautiful support that you've given people in our community that we're a part of. And then in preparing for this interview, I went to the Facebook page of your last employer and I saw the notes from the family you help and I was just, Oh my God, a little part of me was like, I know that woman, I know that woman. And it was just, it was just beautiful, Joni. So thank you. Those gifts that you give those people and that you given me and our little community that we're a part of. So thank you. Oh, you're welcome. Pleasure. It's, it's my passion. It's my life. It's something I love. So it's all good. It is totally evident. So, can you share some of the beautiful hospice experiences that you have witnessed over your 18 years of being a hospice nurse? There wasn't just one, there was so many of them, one of the things I love the most is when families would work together, I remember there was this one family, it was the mom, the wife, who had a major stroke, and so her husband was the main caregiver, and they had three adult kids, and, I think the daughter lived there, it was on, in Hawaii, and the kids rotated in from the mainland to help dad take care of mom. They cleared out their dining room, which had the best view in the house of outside, and they put her bed there and it was the kind of stroke where she couldn't talk, but They could tell if she was enjoying something, so they would all like be like, Oh, mom would love this. Mom would love that, you know, and so they just did whatever., gave her her favorite foods and they just worked together. And they just gave each other opportunity to have a break, but also to be there. And so near the end, they were all there. And it was just, it was just really beautiful to see how they worked it. And then after she passed, our hospice had an annual memorial and I think she died right close to that. We always had this beautiful gathering and so they all came, and they told me, this is so funny, the mom was cremated and they got Starbucks cups and they took her ashes all over the island to all of her favorite places. And they just shake her out a little bit. They didn't ask for any permission. They did it all together, and they were laughing, joyful, remembering her, and remembering all her favorite places and all the memories that went with that. And the husband came to that memorial for years. Oh my gosh. He would come back every year and so I'd always get an update on how all the kids were and stuff. But that was a beautiful family that came together. That is so wonderful. But the Starbucks cups. Oh my gosh. It was so funny. So, I'm curious, do you think that they came together as a family prior to that, or did they come together, do you think they were always close, or did this event bring them closer together? You know, that's a really good question. I don't know. But you know what, a lot of times families, there's somebody that is estranged from the family, or that's really common that there's, there's one, at least, it's very common, and that's the thing with hospice is that we have social workers. And they often try to help if there's any possibility of reconciliation or agree to disagree just because they're dying and just try to not have hard feelings, and try to work together as best as they can. So we saw so many of those, but so many other stories. I had this other man, this little guy, he's this old, crotchety guy. Oh my gosh, he had like hair growing from every orifice on his face, ears, nose, eyebrows, all butchy. Grumpy, grumpy guy, which I love those little old guys because they ended up having hearts of gold. And, so I go visit him every week, every week. Anyway, he took me one day out to his garage and this old grumpy guy shows me on his computer this beautiful video montage that he made of he and his wife to the stone of autumn leaves. And it's this beautiful love story. And you would never have known that if I hadn't had the chance to get to know him a little bit. They had a beautiful love story and it was just incredible. And he did die abruptly. He didn't linger. He just had an event and died abruptly, but they had a beautiful love story You know, you can't judge somebody by just what they look like on the outside. That was one of the things I loved was getting to know the people and then seeing how the families would evolve and, work together to make it the best thing for their loved one. Question for you on that one. You go to the home, right? Like you are with them in the home. Yes. That provides so much more intimacy. Yes. It was so intimate. I got to know their families, their kids. grandkids, their dogs and cats. We do medical procedures with the dog on the bed. We just did the best we could. And we did really good about trying to keep something sterile when needed. But it was very different than working in a hospital. And I loved it because I got to know them and they got to know me and the longer they could be in hospice versus just like a week or two before they pass the better because then they got to trust me and trust our staff. Hospice is a incredible organization where. It's holistic where it's emotional, spiritual, and physical. And we really mean that. And it's not just the patient. It's the whole family, kids, grandkids, if there's children. We bring in the social worker early to start working with the children. To just normalize it a little bit as much as possible and to be a support. But if we don't get in there early enough, they don't necessarily trust us. It takes time. It takes time. And it's just beautiful relationships and I have so many in my heart of people that I got to meet and see their journey. Yeah. And walk with them in their journey and, lots and lots of stories. There is another one. It was a lady named Joan and she had a massive stroke as well. And so she lingered for a little while and her husband adored her. And she was this little itty bitty thing. And he was big, tall guy and they had a daughter and all grown up. And so he just. He took incredible care of his wife. He adored her. And he told me, I always loved to know, how did they meet? I loved to hear about, and they love to talk about it. And so he, he worked in a gas station. She was in college, drove her dad's convertible to the gas station. And that was way back in the day when the gas station attendant comes out and fills your checks, your oil, fills your gas. So he comes out, does that. He goes back into the garage there in the office and he tells the guy he's working with, I'm gonna marry that girl. And then he did. He, he kept following up with her. God must have got her number, et cetera. So it was a beautiful experience walking. That path with them and the family knew she wasn't going to get better and then to continue that. I went away for 10 years and came back and lo and behold, he comes on to service. And I was his nurse and we didn't know until I went to make my first visit. And his daughter was saying, you look familiar. And so we start talking, and lo and behold, I had taken care of their mother. So the, the patient, he was cognizant and aware, and he was so happy to have me as their nurse, because I had taken care of his precious little wife. So it was really. Oh my gosh. It was really sweet. And, it was again, a beautiful little experience they made a little apartment on the side of their garage and so dad could live really close by and they could keep an eye on him So it was just beautiful. But that was, wasn't that a cute, cute story? Oh my God. Just amazing. Just amazing. So, I'm curious, do you have any suggestions? My audience is mainly the children of the aging seniors. So, any specific advice you would have? Maybe even practical advice to help hopefully before their parents get to the place where they need hospice. Yes, I have ideas because I was in that role of taking care of my mother and my brother also took care The good parts first would be to find out what their bucket list items are. If there's anything that they would really love to do, try to make it happen. Like my mom and dad wanted to go see their siblings that were alive. One more time. So my brother and his wife, bless their hearts, took them on this big adventure. But they were still able to fly, but they couldn't have gone by themselves. Right. No way. So my brother and his wife took them and saw all of their siblings that were alive. And so they had that big, grand adventure. But whatever it is they love, like, could be going to see their old hometown one more time, going in the ocean one more time. And then there's special assistive devices. Even if somebody's in a wheelchair or something that these things that float in the ocean, in Maui they had them that people could get in them and you could take them out in the ocean and they could be floating, or go for a car ride. Or my mom used to love Dairy Queen. So my daughter used to go pick her up. Hey grandma, let's go get a Dairy Queen. And so my mom would be so excited, or to play cards, or my, my father died first one year before my mom. He was 93. And then after he died, she was so lonely. And so we moved her over to where I live because there was more adults. It was more family. So, so that would be one thing is find out what their heart's desires, and if you can do that, if there's any way she didn't come live with us, we found a really beautiful retirement community that wasn't too far away so a lot of us could go see her and be checking on her regularly. Smart. But whatever they like to do. My mom loved to play cards, so we'd go play cards with her for a little while. Yeah. Find out what they enjoy and try to do it as often as you can with them. Even if it's just, hanging out and listening to music or watching a movie with an anything. Just spend time with them. So that's the, that part. And then also frequently assess their needs, just kind of being aware. Are they still safe to drive? Are they able to call for help? Like if they had a problem, like, A lot of our seniors, they can't hear very well, and so using a telephone, like a cell phone, is hard for them. there's special phones that have really big numbers on them. We got those for my mom and my father in law that have bigger, bigger numbers. Simple things like that, but how are they doing with their activities of daily living? Can they walk okay? Can they get themselves food? Can they bathe themselves? Kind of being aware, try to keep the eye on those things. And then also how are they doing with their medications? Do they even know what they're taking them for? When did they get refills? Who refills them with pharmacy? Did they get them? My dad was notorious for running out of a pill on Saturday morning. Like, they didn't know that. Two days ago, you were almost out of the pill. Well, Saturday morning is harder to get a refill. Right. So you can get it, but it's a lot more difficult It just depends on where they're at in their abilities, but you gotta, gotta keep an eye on things because it can change really abruptly. You know, if there's two of them or if there's one of them, you know, who's going to be there? What happens if they fall down? Yeah. Yeah. A lot of people fall. You know, there's life alert buttons. There, there's a lot of different safety devices also, get support for yourself, as the adult child, because sometimes they'll lose their filters, their emotional filters, and they just say things. I don't know if you've experienced that, but. Not yet, not yet, not yet, so a lot of people have experienced that and I experienced that and my brother did where my mom could have been the sweetest, happiest thing and then, she'd just say something which hurt my feelings so much so I could debrief it with a trusted friend. That's great. And just real, and they would remind me, well, she's 90 years old, give her some grace and, and just. Get, gird up your belts and, and go back in there, Find somebody that's in a similar situation. Yes. And you really can help each other because it can be discouraging. It can be really discouraging. And try to build a team so you're not doing it all yourself. So other family members. That's why we moved my mom here because instead of just two people, Where she was living, that lived an hour away, there was six adults here. That's so great. And two great grandkids, so there was a lot more contact. Yeah, yeah. With her. And then another really important thing is to discuss their desires for end of life. Yeah. Huge. A lot of people have no idea what their parents want. So, one thing that I did, with my sibling's approval, is I interviewed my parents, and I have a recording of it, so that we can listen to it in their own voice, if we forget what they had said, so there's no like, they didn't say that, here's exactly what they said, so, and it was Less than a 10 minute conversation, and I asked about bucket list, items on there, and desires for end of life, and it was beautiful, my mom, said just thinking about it was difficult, but she's glad that she, she did it Some people don't want to talk about it or their, adult children are nervous to talk to them about it, but it's really important. Knowing what they want, like, and there's a living will and advanced directives, finding out, do they want to be resuscitated? And also try not to talk them out of their desires, if they are ready to not be resuscitated, as long as they totally understand because being resuscitated is actually not a fun thing. And it doesn't work really that often, it's not an easy thing. I don't know if we've talked about this, but a tool go on days. book being, is it being mortal? He talks about that in depth and it's such a beautiful book and just explaining how prolonging is not always the right answer. You know, right. Our medical director at hospice used to tell us a lot of times that, there's so many medications these days that can prolong illnesses. But the people aren't really having the good quality of life anymore. They can't do anything that they really enjoy. And our parents as they age and I feel it even as I'm aging, but as they age, there's a lot of things that they can't do anymore that they enjoyed, maybe gardening, maybe golfing, maybe, going for long walks, maybe, you know, being intimate with their partner, cooking the way they used to cook, going shopping, doing a lot of things that they, That used to build pleasure into our lives. Yeah. They can't do a lot of those. Maybe they love the water. There's lots of things. And so they don't really have as much joy in their life. And so, of course, they're going to have some depression. A lot of times people will say, they're just giving up on living. Well, it's not that per se, it's just their life isn't really that exciting anymore and, and yes, they have you, you know, their grandkids, but they can't do the things that they really like to do with it. You guys, as they used to before. So I think having that understanding and that comes with a support group, having a person who will remind us of those things, if to just be gentle and compassionate, because they're not going to be with us forever and we don't want to have regrets, this is one of those things we don't get to do over. That's a great point. Once they're gone, they're gone and we don't get to do over. So, you know, that's why it's so important to have support, have respite ourselves. With my brother, I had to really plan it to get back. So I did while they would want to take a trip or something. Sometimes I would come for two weeks or three weeks and just be available. Just be on the same, land mass mom and dad in case they needed something case and invariably something would happen, right? Cause as they get older, invariably, they're going to have more and more events. They need somebody to be able to call. It's best if they do, but I have one other something that was really helpful for us, I made a medical information binder, and, when my husband's dad, last year was having trouble and he went on hospice, but then he came off hospice. He got better. So, but at the time his daughter. My brother's sister, nobody knew what dad's end of life wishes were. She didn't know what medicines he was taking, what they were for, what diagnoses he had, nothing. Cause he was kind of more of a private guy so what I'm going to share with you, I had my husband do last year, I sent him with all the ingredients and then they set one up and just recently, his dad had to go to the emergency room. And the ambulance came and his sister said to me, Jody, I'm so glad I had the medical binder. I just pulled it off the refrigerator and I was able to tell them all the information. And it was so easy. That is so great. And the way that this came about was that going into people's homes, for the first time, and you'd ask them, who's the healthcare power of attorney? Nobody knows. Yeah, or oh, yeah. Well, where's your living? Well, well, we have it somewhere Nobody knows where it is. Does anybody know what it says? No, we don't know what it said, right? What medications mom or dad are taking or they have some in the bathroom some in the kitchen counter some by their bed? So they're all over the house. Nobody knows really What mom and dad are taking and so I made this three ring binder with dividers and I made a list of every doctor that they had names and addresses and what the doctor was for and then, a list of all their medications, what the pill color was, what the size, what, how many of the pills they took and how often and what it was for, their pharmacy Another page was about their current diagnoses. What's wrong with them? A lot of people by the time they're 80 years old are going to have numerous things. Maybe they're not dying from them, but they could have those as a diagnosis. And if you think about it, if you're the one that lives near them and they have an emergency, And you're the one running over there and getting the ambulance and going off to the hospital and you don't know any answers. And so also we had a section on their living will, their advanced directives, an actual hard copy of it that says, are they a do not resuscitate? Do they want to be resuscitated? Do they want, feeding tubes or IV fluid? All that stuff. Who the power of attorney is, the paper that shows it. Who their financial power of attorney is, the paper that shows it. Actually the hard copies. Copies front and back of all of their medical cards, their Medicare, their supplements. If they're a veteran, cause you wouldn't know, believe how many times I would go to people's homes. They can't find their wallet. They don't know where their Medicare card is. The hospitals need that information. The supplements, they need it. So I made copies front and back and I kept that in a page in the binder. So we didn't have to find mom's purse. Who knows where it was. We didn't have to find dad's wallet or whatever. We just had it. Also you have to get permission from all of their medical providers, get your parents to give permission. You can even make a little form that says I, and their name, give this medical provider permission to talk to and list all the people in the, that who might want to talk to that medical provider and get those to all the doctors, because otherwise they can't talk to you Yes. Because if an emergency happens and your parent is not able to speak for themselves, they need to have their advocate there that's going to speak for them. And if you don't know what they want. Yeah, it's going to be very difficult and it's hard to make those decisions. Anyways, even when you know, right, right, right, right. We had a situation my mother was very clear. Do not resuscitate, no feeding tubes, no IV fluids. If she was in a position where she was most likely not going to, you know, a serious thing and my mom had a massive stroke. My brother and I, because we had been her care assistants, we knew exactly. And I had it in my binder, but I was on a trip to Maui at the time I was on a vacation. And my daughter took care of getting them to the hospital, the ambulance, but my sister made it to the hospital before my brother. And I did. And she was asking, well, she can't eat, what about a feeding tube? And all these questions, and my mom was already on IV fluids, my brother and I knew mom did not want those. And so, we're speaking on conference calls with the doctor and my sister's asking all about that, and I was like, mom did not want a feeding tube. Right my sister was like, Oh no, she was all upset, but she didn't know about it. So if you can share with your, with everybody, with everyone, my sister never really didn't want to talk about it. And some people are like that. Right. She didn't want to think about it. She didn't want to hear about it. She didn't want to know about it. But those, you can see how those kinds of situations. And cause a problem. So when my brother, who was the healthcare palliative attorney arrived, which was shortly, like within a few hours of that phone call, he was able to just show, make it right. Show the form, show the form to the doctor and the doctor's like, Oh my goodness, I've already done more than what she wanted. We will stop the IV fluids and we will follow her directives. But you never know when they're gonna have an event. Yes. Yeah. You never know. So that binder. I just had it mom's medical information and a brief history. Oh, hospitals always want to know the year that they retired. I don't know why they want to know that, but they always want to know that. That's so funny. Find out that date, put it in your binder and get all their passwords to like my chart. I don't know if you know what my chart is. where I live, there's a system where a lot of the doctors are all hooked together, and they can send you medical information. Where they can send your lab results and things like that. Get their password and put it in your binder, so you can look into their chart. Of course with their permission, all with their permission, but if you don't get it, you're not going to be able to look in it. Oh, that makes sense. So, just really basic things like that, really made a big difference. I started taking mom to doctor's appointments And I used to take that binder. I had some extra pages in there and I would write notes of when we'd go to the doctor, what happened because my mom didn't remember. Yeah, she'd forget to ask a question that she would been complaining to me about. So that, that was one of the biggest helps. That is such great advice, Joni. Yeah. So, Toni, I'm throwing this, last question in here, and I'm just curious, like, did you change your life at all after, 18 years of being a hospice nurse? How did it influence your own life? Yes, absolutely. Absolutely. When you look death in the face every single day, I was at the bedside of people dying every single day and hearing their stories of,, did they have any regrets in their life? I just would chat with people, right? Like you just chat with them. And, and, they never said, oh, I wish I worked more or I wish I did. They always talked about being with their family, loving, caring family, or doing the things they love not working so much. Relaxing more, that type of thing, like seizing the day, not waiting until later because there were lots of times where people who were my age, even our younger got a terminal diagnosis and they just retired. And they had all these plans. So I was changed, very much changed my idea of don't wait till, don't wait till then don't wait, start, don't wait, take the darn trip right now. Do the family gatherings, do those things to build the core memories Seize the day. Do not have regrets. I don't want to be on my deathbed and being like, Oh, I wish I would have, a family dinner more often. Or I wish I would have taken that trip that we dreamed about or, you know, any of that, that kind of thing. Yeah. I mean, do you probably have things like that too? I mean, that's why I left corporate and became my own boss. I was like, no, no, no, no. Life is too short. Life is too short. So I'm like, I'm going to enjoy it with people like you. Well, so now, so now I'm always like, take the trip, do the, do it, do it, do it now while you have your health. Yeah, because there is no guarantee that tomorrow you're going to have your health or that next week you're not going to get a diagnosis of your own. So tell my listeners about your upcoming trip So we are planning to go to Portugal. And, we actually were supposed to go last year and go on the Camino de Santiago, where we walked 200 miles, on a pilgrimage. And I couldn't go because I got plantar fasciitis on my feet. So we had to cancel the trip. So we rescheduled it for this year. And my feet are not 100 percent better, but we're still going. We decided, take the trip. Take the trip. Take the trip. So we're going to go and just see what happens. We're just going to go. It's so beautiful. Thank you so much. This has been such, an amazing conversation and, and I knew, I knew you had stories to tell, beautiful stories that would help us and, and you did. You did. Well, it's my pleasure. It's fun to revisit those. Yeah. Thank you so much. You're welcome. Wasn't that amazing? After I stopped recording It Was Funny, Joni said, What we really say is, take the damn trip, but I didn't want to say a curse word on your podcast. Which is, of course, totally fine in my books. So, take the damn trip. She also thought of one other piece of advice. If you're able, try and give any Everyone alone time with your parent before they pass that private moment many times allows for forgiveness and gratitude. Such beautiful advice. Thank you for listening. I appreciate the opportunity to serve the Hop Thrive community and for all the aligned, caring adult children it is attracting like you. If you got something out of this episode, please be sure to follow or subscribe wherever you listen to podcasts so that you are notified about new episodes and please share the Helping Our Parents Thrive podcast and Facebook community with anyone that you feel would like to Might need a little support as well. Visit us at hop thrive. com for more information. Together we thrive.