I realized I have got to have more time to be helping and not doing the day to day caregiving and more time for, for me to be able to support me. And, you know, caregiving for someone living with dementia, I’d love to think it’s a one person activity. It is not.

Are you caring for others while working and trying to live your own life? Wondering how to find the time for your own health and happiness? Well, you’re in the right place. The Happy Healthy caregiver podcast, which is part The whole Care Network is the show where real family caregivers share how to be happy and healthy while caring for others.

Hello and welcome. I’m your host, Elizabeth Miller. I’m a fellow family caregiver, a care advocate, a professional speaker, author, certified caregiving consultant, and certified senior advisor. If this is your first time listening, thank you for being here. This is a show produced biweekly to help family caregivers integrate self-care and care. Giving into their lives. Each episode has an accompanying show notes page. If you’d like more detail about the topics, products, and resources we speak about or you want to see any of the related photos, you’ll find the show notes by going to the website happyhealthyargiver.

com and underneath the podcast menu, click the image or episode number for today’s show. The link for the show notes will also be in your podcast. platforms episode description. Now, let’s get to it. Let’s jump into this episode.

Thanks for being here. I have a couple of announcements to share with you before we get into this fabulous episode with my friend and fellow care printer, Nancy Treer. You’re really gonna learn a lot from Nancy and her stories. I know as a caregiver, we feel really stretched for time.

We feel like, you know, researching and advocacy and Nancy and I talked. About that is like one more thing on our to do list, and one of the ways that I try to help is by doing a weekly newsletter for you, where I curate content under the happy, healthy and caregiving headers that I feel like could have benefited me and can benefit other family caregivers in their caregiving journey. So, let me take a little bit of that burden off of you. Subscribe to the email list, you go to.

Lee HHC News HHC and caps, news in lowercase, and you’re gonna get a weekly Tuesday email from me and I’m not gonna share your email. I hate spam mail as well. I just want to provide you valuable things that maybe you can try on as far as self-care and caregiving tips that can help you in your journey. I’d like to thank our episode sponsor, Cox Mobile. Cox Mobile’s recent research reveals a growing Challenge. Members of the sandwich generation, those that are both caring for aging loved ones and children, are feeling the burden of digital safety.

In fact, 86% say that managing online safety for their kids and their parents adds stress to their lives. As a member of this generation, I certainly understand how overwhelming it can be to juggle your career, your household, and then keep your loved ones safe online. But here’s the good news, you don’t have to do it alone. Cox Mobile developed a suite of digital resources with the support of Common Sense Media to help you navigate these important conversations with both your kids and your aging parents. To learn more about the research and access these tools, visit Cox Mobisafety.com.

For this episode segment of what I’ve been reading, I wanted to share a holiday or winter theme book with you. Since we are gonna kind of kick off into that season. I love to read holiday and winter themed books during the holidays, and I have a really good holiday contemporary romance read that I can recommend to you that’s called Love Holly by Emily Stone. It’s about a young woman who tries to heal a rift in her elderly pen pal’s family in time for Christmas, all while falling in.

Love and maybe even reuniting with her own family. Ever since there was a car accident that tore her family apart, Holly has been part of something called the Lonely Hearts Holiday Letter Writing Club. Every December, she writes to a stranger who is also spending Christmas alone and receives a letter from another lonely person in return. Usually these letters go unanswered, but that’s the point because the letters are supposed to be anonymous, right? Right? And the senders write whatever’s in their heart. But she gets this letter during this one year, and it’s, it’s a little bit different for Holly.

Not only is the letter full of grief, she knows all too well, but it’s the writer Emma, mentions a place that Holly has visited before, and then we’ll just leave it there at that because that’s really where the plot starts to thicken. This book has family dynamics, forgiveness, romance. Grief, and a bit more plot, frankly, than a typical holiday read. I gave it 4 out of 5 stars and really enjoyed it. And if you’ve been following my podcast and my reading journey, you know that I’m very stingy with my 5 star reads.

I use those very sparingly. So a 4 star is a great recommendation and I’m gonna link to it if you’d like to check it out. My favorite thing that I want to talk about is needlepointing. So, most moms teach their kids. Things like needlepointing, but in my case, my 503 year old, or by the time this comes out, she’ll be 26 actually. Daughter Natalie taught me how to needlepoint on one of our Chicago visits when I went to see her. She’s a hip 25 year old but has many grandma type passions like needlepointing and other things.

She’s also a NICU nurse, so sometimes she has some down time at work to work on her projects and she also loves to needlepoint while she’s watching TV. I was kind of reluctant at first. I did remember that I like to cross stitch at one point in my past, but when your daughter has so much passion and invites you in to do a fun activity, you got to just say yes and go all in. We went shopping together, we picked out a needlepoint pattern, we got the threads and she taught me the basics.

I love the shops, by the way, they’re so cool looking. They’re organized by color and the needlepoint canvases are really like. Art on the wall that you can shop and and pick for. This is my first project. It’s a little bit wonky. They’re gonna fix it when I take it into the shop because I guess I’m right-handed and was pulling it in that direction. But this is going to be a bag tag for my pickleball bag. This is the chaos of back, so it’s like, I feel like, you know, this is what we want the world to see and then this is what really happened behind the scenes here for my needlepoint project.

And they’re gonna help finish it, they call it that some of the stores will do pillows, you can do bags, and she’s made me a luggage tag before, but this is going to be a bag tag for my pickle ball bag. What I like about doing needlepointing is that it’s something fun for myself and it allows me to kind of be in the present moment so that I’m just thinking about where my thread needs to go next. And it also has really been valuable and that it’s keeping me out of this.

Snacks, frankly, when I’m watching TV at night. I have also found that I need, I need a little craft light to be able to do that, even though I wear one contact for distance and one for close-ups, sometimes these little bitty holes can be challenging. So my next project, I’m gonna go for a little bit of a bigger needlepoint hole. So anyway, check it out. There’s some great kits that are online. I’m gonna try to find a good needlepoint kit that you could maybe check out to see if this is a fit for you or just Google.

And see if there’s a needlepoint shop in your area. They might have classes that you can attend a day or night, could be something, you know, a little self-care moment for you that you certainly deserve.

Let’s meet today’s caregiver in the spotlight. Nancy Treer, a retired software industry executive turned certified caregiving consultant, co-founded the caregiver’s journey with longtime friend Sue Ryan after both personally faced the challenges of dementia caregiving. For multiple family members. Nancy has supported her father through Parkinson’s, her father-in-law through Alzheimer’s, and her husband through frontal temporal dementia.

Drawing on her professional background and personal experience, Nancy offers a compassionate yet practical approach that empowers family caregivers to face their caregiving journey with confidence, fewer surprises, and more effective solutions. In this episode, we talk. About the difference between palliative care and hospice care and why both are often underutilized. Nancy also shares insights on the stages of grief, including a unique concept called drip grief, her love of travel, the power of podcasting, and how caregivers can access an interactive roadmap filled with practical tools and resources to guide them on their caregiving journey. I hope you enjoy the show.

Hi, Nancy. Welcome to the Happy Healthy Caregiver podcast. Well, hello, Elizabeth. Thank you for letting me join you. Yeah, I’m excited. Did you like, as a fellow podcaster, do you like when you are the guest sometimes to kind of shake it up and change it up a bit? I do a lot, actually. It’s much more fun. And I’m a big, not just a podcaster, but I listen to your podcast, everyone that comes out. I really, really enjoy it. So, thank you.

Thank you. Likewise, I listen to many caregiver podcasts. Sometimes I don’t hit them all, but I certainly have them all in my feed, but I go back and forth between podcasts and audiobooks. So that’s my challenge is trying to, trying to get it all in. But we’ve developed quite a friendship, which I love that, you know, we were introduced by a fellow caregiver, Sue Ryan, who has been a guest on the show. And, you know, I really connected with Sue a couple of years ago at the care colloquium.

Those things just started coming up as we approached National Family Caregivers Month in November. And, um, yeah, we, we met at. Was it Goldberg’s Deli at the Battery, yeah, um, in, in You know, and have developed a friendship since. So I’m just really grateful that you’re in my neck of the woods and that we can share business ideas and have a friendship as well. Me too, and I can’t tell you how much I appreciate the support you gave us. We only launched our business like 14 months ago, and you met with us a couple of months before we launched it and did not hesitate to jump in and give us advice and help us every time I had a question. Amazing.

I tell people about that all the time. I said how lovely you were to help. Without even really knowing me very much, I just, you know, started sending you emails. What about this? What about that? You did not hesitate. So thank you. Well, you know, I think it’s like, what I love about this caregiving space is particularly with the business side of it, you know, before we get into your story, we’re going to definitely focus on that. But I, what I love about this space in particular is that there, there tends to be this mindset of abundance versus a mindset of scarcity where we have 63 million.

Family caregivers just in the US alone. And so they’re going to need more voices than just me and yours other people and certain things, you know, they got to hear multiple times. They got to hear it in different, different ways so that they can try it on and see if it’s going to work for them. And that is important to me, that we have this mindset of abundance and this caregiving, care economy, caregiving community, because I think that we’re stronger together and we can all rise and help each other.

100% yeah. That attitude makes all the difference in the world, I think, because it helps us, I think, know where to point people and learn more about each other, how we can help support family caregivers because that’s what we’re here to do. That’s what we’re here to do. And I like a, like many of us, like myself, like many of us who get in this care economy space, Nancy, like you have personal stories, really. About why you are in the caregiving, how caregiving kind of can you. Do you consider yourself a seasoned caregiver or are you a serial caregiver?

You know, they all happened. It started with my father a little over 25 years ago. He passed in January of 24 after living with dementia for 25 years, and I was a distance caregiver. My sister lived 45 minutes away, so she did a lot of the day to day work, but I will say I probably talked to her or my mother every day to every other day during the course of those 503 years, and of course as it got more difficult and decisions had to be made on a regular basis, you know, it brought my sister and I closer and we were already friends, but now we’re best friends.

So I, there was something to that that I think is a, you know, a lovely outcome. So we supported him through his journey, but while that was happening, My husband in 2015 was diagnosed with frontotemporal dementia, clearly much closer to home, and so I provided care for him until he passed in December of 24. In the middle of that, about four years into his journey, my father-in-law, who we also support, they don’t have a car, they don’t drive, they live 3 miles away. We take them to all their doctor’s appointments and do their grocery shopping and all the things that happened a lot through COVID, obviously.

So we’re there. We were their main caregivers. That’s what we signed up for when we moved them close to us. He was diagnosed with Alzheimer’s. So there was an overlap and he passed in October of 24. So there was, I’m not sure what kind of caregiver I am, but there was a lot of overlap for a lot of years. Yes. And then they all ended abruptly within a 12 month time frame. Wow. Wow. Your dad, your father-in-law, and your husband. That’s a lot of, that’s a lot. I say grief, but you’ve had grief even while you were caregiving, the anticipatory grief and Did you know what anticipatory grief was?

When did you kind of click, click into that? You know, I learned Sue has a term called drip grief. It’s a little different than anticipatory grief. It’s more the grief that happens when you’re caring for a loved one with dementia, and it’s kind of a constant gut punches, like they don’t remember their telephone number, they don’t remember their birthday, they don’t remember their ATM. Code. Each one of those feels like a punch in the gut, and she, she titles that drip grief, and that’s its own kind of dementia caregiving grief, I feel like to some extent.

And then I think as, as I noticed my husband getting later on in his journey and you start to realize that this journey is going to end, because while you’re in the middle of it, it doesn’t ever feel like it. You never imagine it ending. That’s not Not something that comes to your mind, but as he started into more late stage dementia, I definitely found myself in the anticipatory grief, which is even a different kind of grief, because at that point you’re spending a lot of time thinking about where this is going to go and how it’s going to end.

You’re mad on their behalf because of their, how they got gypped on their life and all that goes with that. And I actually found that an AARP article on anticipatory grief, so I learned from that. It was, it was quite enlightening, probably just something I found, you know, through a Google search. And then of course there’s the grief after the podcast, which is quite a different kind of grief. Yeah. You know, it’s the Sue’s term and Sue was your, your business partner, we’re going to talk about and she’s been Sue Ryan has been how we met each other and, and she’s been a guest on the show.

We’ll link to her episode about the massive massive acceptance and radical presence or I might have them out. Good. Yeah, it was, it was a great. So you all have that connection through your corporate life and through this dementia journey with your spouses and the drip grief, I mean, that really Uh, the gut punching, I think is, is better, I think, cause I was saying, it feels like paper cuts, but paper cuts are annoying, but not a gut punch is, is bigger, and that is tough to describe it.

It’s tough to describe, you know, what a, what a caregiving journey is, but particularly what a dementia caregiving journey is and the grief of your spouse, your partner that you thought you were going to be living in your golden years with and doing different activities in retirement. Because you’ve had this rare space of, of being, um, a caregiver for aging parents and older adults, and then also for your spouse. Like, what are some of those key differences that you feel like kind of just call out to you?

I think both of those, they share one commonality, but in a very different way. It’s extremely disturbing when you start to realize that you’re acting as a parent and not As a child, that is a very uncomfortable situation and but you have to do it at some point, especially when you’re talking about someone who’s living with dementia. But it’s the same problem when you become the parent to your spouse, but in a very odd, odd way. It changes the dynamics of that relationship changing are very odd and very much in the world of grief.

As that relationship changes and you become like the parent. You know, you’re, you’re grieving the change in that relationship in a different way and probably more than I have in the change of my parental relationship, even though that’s disturbing as well. It’s not the same as when you realize you’re no longer acting as a spouse, really acting as their caregiver and their parent almost. And then the, the dreams of the future, you know, that you, you, I’m sure people feel sad about not being able to have their future with their parents, but you Future and your dreams of, you know, we’re getting into our sixties, we’re going to retire and, you know, all the things we’ve worked so hard for, we’re going to take advantage of now.

That never happened. And that was clear that wasn’t going to happen since 2015. So that’s also something unique, I think. I remember one time you were telling me about a story where you had to move out of your, your en suite in your house, your beautiful home. Uh-huh. Share a little bit about that, cause I think, you know, that somebody’s going to relate to that story and and say, wow, that’s a clear example of how it’s something is very different. Exactly. So one day I was in the car with my husband and I said he was still able to get around but wasn’t driving at this point.

I said, let’s go pick up, you know, we need to go to the bakery and pick up a birthday cake for your mother. So he gets in the car, we’re driving to the bakery to pick up a birthday cake that I’d ordered. And we’re driving along and he looks at me and he says, Where are we going? I said, Well, we’re going to pick up a birthday cake for your mother for her birthday. He says, You know, you’re going to love my parents. Now, mind you, at this point we’ve been married 30 years.

I actually didn’t start with that. He starts with, Do you like driving this car? It’s my car. I said, I thought, well, wonder where he’s going with this. But yeah, I said, Yeah, I really like driving this car. It’s a nice car. He says, Well, she does too. And then I thought, what in the world is, is, where is he going with this? It really didn’t cross my mind that he wouldn’t know who I was. And then he asked about where we were going and and I said, we’re buying a birthday cake for your parents, for your mom, and he said, We’re going to love my, my parents.

They’re great people. And I thought he has no unearthly idea who I am. I was totally blown away by the whole thing. didn’t have much of a reaction. I just was absorbing it internally. We picked up the birthday cake. We’re driving along. He says, Do you know how to get to my parents’ house? I’m like, Yeah, I think I do. And he’s like, OK, well, for some people living with dementia, these things happen for an hour for 15 minutes, and some people, it just is the last time they ever know who you are.

And so I got home and I realized I hadn’t taken a shower that day, and he was treating me like a guest in the home. He couldn’t have been. Nicer. That was the nice good part about it. He was as sweet and nice as he could be like I was a guest at the house, and I thought, I haven’t had a shower. I can’t go into the master bedroom and strip down naked and take a shower. I mean that he thinks I’m a guest in the home, so I had to gather all my little things, go upstairs to one of the guest rooms, take a shower, get dressed, and I just was kind of waiting on him to snap out of it and it just never happened.

It never happened. Eventually that night. Gotten all my stuff together, spent the night up in the guest room, and then slowly but surely ended up moving all my stuff upstairs and he would ask me questions like, Are you married? Who are you married to? Where do you live? Who lives up there with you? And it just went on and on and on until he stopped asking and started accepting me kind of as his caregiver. Um, I will say one cute thing because otherwise it was literally one of the most horrifying experiences of my life.

One of the cute things. We had some friends come over for lunch just within a week or two of all that happening. They brought some lunch over. They were good friends of his that would come over periodically, periodically and visit with us. And the wife turned to me at one point during the lunch and she said, My goodness, he’s flirting with you. It’s really cute. Yeah. You know what’s what’s shining through for me, Nancy, as a, you know, as someone that worked in the space and caregiving, it’s like that whole story, first of all, very tragic tragic and In its own grief in in many ways for you.

And yet, you weren’t correcting him. You weren’t trying to explain, no, I’m your wife, and we’ve been married, you know, 10 amount of years and blah, blah, blah. How did you get to that point where you stopped, you know, correcting people? Well, number one, it didn’t feel like it was the right thing to do at that time. I will tell you, probably that night, the next night, sometime in the first few days, we’re sitting on the sofa watching. The news, watching TV, and he turns to me and he is literally in tears begging me.

He had a primary progressive aphasia, which is the type of frontotemporal dementia. It’s the same type that Bruce Willis has. So his expressive language was getting slowly and slowly worse, as well as his receptive language, his ability to understand what you were saying slowly, slowly worse. So he turned to me and he’s literally in tears begging me to take him there because they’ll know where. She is, and I figured out from listening to him piece it together that he meant to my office because they’ll know where she is.

Well, don’t think I had told him when he first got diagnosed with dementia and 503% of people who are diagnosed with dementia forget they have dementia eventually. So that means most of the time you’re wasting your breath if you tell them anything about dementia. So I’m sitting there with him and he is begging me to take him to find her crying. I am have told him when he first got dementia, I will always be here. I will always be here. I’m never going to leave you because he was scared.

I said, I will always be here no matter what happens. Sorry, it’s going to make me cry. And then he said, so then the most disturbing. Part of him thinking I wasn’t there is that I had promised him I would always be there, and he didn’t think I was there. It was so horrifying. So don’t think I didn’t on my hands and knees hold his hands, cry with him. Like my sister, I call my sister later. I’m like we just had a big boo hoo session. Obsession and try to explain to him that I was here that it was me.

I mean, I just went overboard. It didn’t work, by the way, so it’s a complete waste of time. So I figured that out, but it didn’t, it didn’t keep me from trying that time because that was I was so terrifying. I had to try because I did try, we tried for you. It was, you know, we we we try and so much of caregiving is trying things and seeing what sticks and what works and so. That, that is, um, you know, of course he knows in some, some space now that you have always, always been there for him.

What a, what a journey, you know, what a journey you’ve been on with, with him and with your, with your other. What is life like for you now, Nancy? I tell people that life after caregiving, you need to be a little bit deliberate about it like you would if you were going to retire, because you don’t know when it’s going to. And retirement, you can sort of plan for, but they, there’s a lot of recommendations that say if you’re going to retire, you need to have a hobby or something you’ve started picking up and doing on a regular basis that you can spend more time doing.

So you’re not just one of these people who retires and has nothing to do. So Sue and I had started the caregiver’s journey the summer before, actually after the summer of 24. After my father passed away, but before my father-in-law, my husband passed away, I had no idea that either one of those things was going to happen later that year. I thought we had another couple of years, to be honest. You had no business starting a business. I same way I did start, but we needed it. We needed it.

I realized I needed something besides caregiving in my life, and this felt like a mission and a purpose. So I spent time on that, which gave me mission and purpose. And about my husband passed in December. In February was probably the end of February, I got myself together enough to wear this part-time mission and purpose. I now spend probably 35 hours a week on this nonprofit that we have because it gives me mission and purpose. So when I’m not working on the caregiver’s journey and resources and podcasts for that, I’m traveling.

That is something. Something that I love to travel, particularly internationally, did not get a lot of chance to do that for the last 10 years. And I’ve got something on Delta every other week. I mean, every other month. I want, I want to be gone somewhere, so I’m doing that as well. Nice. Yeah, I, I, um, I love to travel as well. I think it’s like it heightens all the senses or something and and traveling internationally, and I’ve had a big travel year. Even though I’m, I’m caregiving for my brother and, and, and doing this business too.

But I love that you said that you needed the mission and purpose. You were deliberate about it. You also were deliberate about, I remember you, you said something to me too, like, I want to go out at night, or I don’t know, can you share a little bit about that? That was at the beginning as well. I mean, at the last year. Last year, I had my list of things. I wanted to do and I had already gotten pretty good at going out to lunch with someone at least once every couple of weeks just to get out.

I had at this point part-time caregiving help at home. My husband stayed at home till the end, so did my father and so did my father-in-law. I had part-time help at home and enough part-time help to be able to get out to lunch on a regular basis, so I made that. A priority. I had made having time to work out in the mornings a priority, and I still felt like something was in, like something was missing. I was going on a vacation a couple of times a year.

I knew that was still not what all I wanted to do with with traveling, but that didn’t seem practical. And then I realized, you know what I don’t do? I don’t go out at night at all. My caregiver leaves, you know, after 8 hours, and so I’m on evening duty and nighttime duty, and I just don’t go out at night at all. And I made a priority out of at least once a month getting my asking my caregiver to stay late and going out to dinner or out to a cooking class or something at night.

And you know, it really did fill a void that I thought was there and sure enough, it really was. It’s so smart. And I think that maybe we realized that we did the 20 for 25 list together. and maybe I think that was one of the things on your list, and I just thought that was so unique and interesting. We’ve had some times where we’ve been out at night together too. And I’m also excited to, to travel with you. We’ve got an upcoming, we’re doing the self-care at Sea cruise, which I’ve been talking about a lot, and it’s finally here.

And so this will actually publish after we get back from the cruise. Um, but I’m excited to be that you and Sue are coming. I’m bringing my daughter as my guest. We’ve got other caregivers that are joining us. What are you excited about for the cruise? I’m excited about spending. More time with other people, which and meeting new people, which I always find very interesting, and people who have close to the heart of what I’m doing every day, which is helping dementia family caregivers, but caregivers in general.

So I’m really excited about that. And then I’m excited about getting into the Caribbean. There’s nothing wrong with that. That goes right down my list of places I can go all day long. I can spend time in the Caribbean. I love it. Yeah, there’s a few places we’re going to 3 places I’ve never been, the US and British Virgin Islands, the Bahamas. I have been to the Dominican and Yeah, the water. You know what, I make a distinction between a trip and a vacation. And this is going to be like a vacation where I’m bringing my needlepoint, I’m bringing my books.

I’m, you know, gonna swim and kind of feel what inspires me and whether I want to play pickleball or yoga or want to do different excursions. Whereas a trip, I feel like is a lot of like, a little bit of pressure for sightseeing, which we’ve done some, you know, I had a great trip this year with my son. in Porto, Portugal, and then I went on a separate trip with my husband to Italy. So I’ve been having a big travel year as well, and it’s living my best travel life.

It’s hard as an entrepreneur and caregiver to kind of figure out how to, how to get all that in. It sounds like I’m complaining. I’m not complaining, but you have to be purposeful and intentional as a, as a business owner, too, and so this one will be fun with my daughter Natalie. Um, what are some of the other places that you’ve been since caregiving has ended? I went with a friend to Costa Rica in February, which was on my bucket list. Uh, I went to Italy as well with my sister this summer, which was also, you know, some I went to places I’ve never been, which was lovely.

I will be going in December 26th. We leave for New Zealand and we’re going to do New Zealand and Australia in December and January. So good stuff. My sister, who is my very best travel companion, and there are big buddies. Unfortunately, she still works full time, so I can only take up so much of her travel time, but I am using every bit of it. Yeah, it’s so important to have the great people to travel with, you know, that like the same kind of things and love that their caregiving experience with your parents brought your sister and you really close and I get the whole sister power thing.

Like my sisters are tight, my best friends as well. And sometimes, you know, caregiving can be hard for us with my brother right now, like It’s, it’s, it’s a lot, but we still nurture that, you know, sister relationship. We do an annual trip every year for for sister’s weekend, that’ll be coming up in the spring. Um, 25 years we’ve been doing those, it’s just amazing. So it’s important, I think, to kind of, do you like planning trips too? Is that part of the fun? And my sister and I split it, so we do, people will say.

Are you going, do you go like on tours, and sometimes we do, but mostly we go on trips that we plan ourselves. So I tend to plan how long we’re going to spend in each city and the major cities we’re going to go to. Once we have the plan, she goes to it on the restaurants we’re going to go to and the sites we’re going to see. So we have a good Yeah, go in there. A good system in place. Yeah, I’ve even used Chat GBT. I know we talk a lot about Chat GBT for our business, but I used it to help with travel planning and finding the right neighborhoods to stay in and with that match up with the activities that we like.

And it, it, it didn’t steer me wrong on the Portugal trip. The Italy trips, we were more passengers on. Somebody else had done the plane. It wasn’t a tour, but it was, we were going as friends of someone for a birthday celebration. So, Interesting. Well, before we wrap up on the caregiving stuff, I want to talk about, well, one of your caregiving tips, which I know you’re very passionate about, is really educating people on palliative care. And so before we kind of talk about the caregiver’s journey, I want to give a moment to that.

Tell us about palliative care, how you discovered it, what you thought it was, and what it really is. Thank you. That is, it’s huge. And we, when we talk about the roadmap, Sue and I just created something called the. Navigating dementia caregiving roadmap. It’s on the guide section of our website, and it’s 503 steps for navigating the dementia caregiving journey. We find that people either have no idea where to start or they have way too much information and, and they’re just overwhelmed with what do I need to focus on now and what can wait until later.

And consistently, and we worked with our knowledge, but we also worked with knowledge we’ve learned plus we um Consulted with 5 different social workers as well as we went, created the the 20 steps. The interesting thing is the very first step. Catches everyone by surprise and then after they learn about it, which is number one, choose your palliative care organization after they learn about it, this includes the social workers, by the way, they go, Wow, that makes perfectly good sense. I didn’t realize that. So palliative care is a term that can be a verb or it can be a noun.

We’re talking about palliative care as a noun. Palliative care is a palliative care program. Choose a palliative care program. Some people think palliative care is hospice, and hospice is a type of palliative care as an adjective or a verb, not palliative care program. Most a lot of hospice organizations have a palliative care program as well, but palliative care is for people who have been diagnosed with a life limiting disease, but you are still, still actively trying to help them live their best life. So you’re still working on creating, you may be working.

curative medications and things at that point. Dementia is a life limiting disease. So as soon as you get a diagnosis, you can choose a palliative care program, and then the palliative care program, when the time comes that your loved one needs to move to hospice, if you want to, you can stay with that same same program and they’ll move you into hospice when it’s the appropriate time. But palliative care is the reason we have it as step #1 is step number 2 is Get your legal documents in order.

Step number 3 is get your financial documents in order. Step number 4, choose a support organization. If you are part of a palliative care program, which it’s paid for by Medicare or by your insurance organization, #1, and secondly, they will help you get your legal documents order, get your financial documents order, find a support organization. So most of them spend as much time helping the family caring for the loved one with dementia as they do. Caring for the person living with dementia, and they will get you through some of those early steps with a lot of help.

So, I mean, one of the reasons why I love doing this podcast is that I’m always learning different things. And so I’m learning from you at this moment about that. I would not have thought that that was the first step either. And I know, you know, we got to a point with my mom’s COPD that she needed palliative care because of the pain management was so great that she would have to go back to a hospital, visit every so often to get the pain. Managed. And so that was really what opened the door for us.

And I think it was managed by the hospice organization because she was in a rural place, um, and, and bedridden at home. So that got a little confusing for me, but it was super helpful, particularly for her when she was in a lot of pain. Do you think that, so maybe it might make sense as a first step for beyond dementia even, but for any, like you said, any of these life limiting diseases where there is no cure for COPD. Some other things and it is progressing in a one-way street.

How do people do that? How do they find their a palliative care program? So you can find a palliative care program by by just and actually on our, if you look at our, um, the roadmap, it’s interactive. You can click, we take you directly where, where to go, but just Google it, palliative care, put in your city or your zip code or something. Don’t be scared if the name of the organization is something hospice. Because a lot of organizations leverage the name hospice, but they’ll have a palliative care program as well as hospice.

So interesting, yeah. And then you’re right though, there is some challenge sometimes in rural organization in rural areas, finding a good palliative care program. If you’re in an urban area, you’ll find more than one. You do find a lot of choices. Look at customer reviews, etc. You can call the palliative care program directly. They will. needed to talk to your doctor and get a referral, but you can call palliative care directly and they’ll help you through that process as well. Did, did you find, because I know even when I brought up hospice, I know that these are two separate things, but when I brought up hospice with a doctor, and maybe what I really wanted to bring up was palliative care, but I didn’t know that that’s what I wanted.

You know, we’re figuring our way out in the dark. Uh, but the look I got and the judgment I got from that doctor was horrendous at the time. What kind of response did you get when you went to the doctor to try to say, hey, this is I think a fit for us? I had two different experiences. One was the doctor I had for my husband, and that was already a transitional physician organization that came to the house, and I found them through one of the memory care units at two of the assisted living or community care communities I looked at, and the same organization came.

To both of them, so they, and I got their name. I called them. I said, Did you do in home as well? And they said yes, and they started coming here. They gave me no trouble when I said I’d like to have him evaluated by hospice. You call them a transitional. They were called Transitional physicians of America, I believe it’s called. I’ll find the exact name for you and give it to you, but it was awesome. They, they gave me no trouble whatsoever, but they were used to assisted living communities and care communities.

My father-in-law was still going to. General practitioner, same one that I go to actually. I love them, but the look on the face when I said, I want to call in hospice and have him evaluated. Do you know what that means? Do you know blah blah blah blah blah blah ready for hospice, right? And I said, Well, I’m not, I don’t know if he’s ready for hospice or not. By the way, the average hospice person told me this the average dementia patients on hospice for 2.5 years, even though technically they have to be declining and within 6 months.

Of their life but they’re on it for average to patient 23 years. So my husband was on it for at least 6 months, my father-in-law for at least 5 months. My mom was on hospice for over 2 years, so it’s never too early to call hospice. I mean, I don’t think so anyway, I called and I said, I mean, I hate to be mean. I don’t care. I want him to be evaluated and you have to give the order for him to be evaluated so they get and it took me like 4 days to get them to send the order.

I finally. I got my car and drove back over there and I said, I’m still looking for the order for hospice. I think they just thought if they ignored me it’d go away. So guess what? The very first time he got evaluated by hospice, hospice said he’s not ready yet. What did I lose? Nothing. What did hospice get a baseline, a baseline, so that when they evaluated and the next time, 23 months later, I called him back. I said, I think he’s ready again to be evaluated. Still got a little trouble from my general practitioner, but they were a little easier to deal with this time.

I came in and said, now he’s ready. 5 months later. So, you know, it was not too early to call in hospice had to initiate it, and I think that’s the thing that I want people to take away from this, is like you had to initiate the palliative care, you have to initiate the hospice care. Like, it sucks that we have to, like, in addition to doing all of the things, we have to also like research and advocate and and hopefully the podcasts and the things that we’re offering and the road map, of course, it fast tracks people to that.

But why was it so important for you that that you, you had a hospice experience probably prior. So what was it that you knew that you were going to benefit from by having your father-in-law on hospice? So my father, um, sorry, my father was on hospice first, which is how I once my mother, matter of fact, the first person who told her was one of her caregivers, told her that he thought it was time for hospice. My mother burst into tears. Called me crying. Oh my God, Jack says it’s time for your dad to be on hospice.

I don’t think we’re there yet because most people think hospice is the last 8 days of their life, right? Yeah, she was massively in tears. Well, we didn’t know, so we did some research and I’m like, well mom, maybe it is based on what I’m reading this doesn’t look like a bad thing. So we got him on hospice and we actually end up changing hospice organizations a few months into it because we weren’t happy with that hospice. It’s another option you have, by the way. And I saw what happened.

Hospice brings in supplies. A nurse comes to your house every week and looks at your patient and evaluates them and ask you questions about what’s going on. They check on you as the caregiver. Do you have what you need? They have chaplains. They have social workers. It’s just this massively. It’s it’s covered by Medicare in most situations, and insurance and Medicare covered, and these people are coming to your house every week to help you. So why would you not want to be on hospice? Doctor’s appointments, you don’t have to pick up the prescriptions.

You don’t have to order the supplies like they’re taking inventory. Oh, you need more of this and that and the other. It’s a huge time saving um and and helping hands for caregivers. So, yeah, hear it from us. I’m also going to link to a couple hospice episodes that I’ve done with some experts in this space, Helen Bauer and Barbara Carnes, amazing people that this is what they do, and Helen even has a hospice navigator thing that you can call her and ask questions if you’re still a little shy to kind of bring it up with your doctor.

Well, thank you for kind of going down this hospice palliative journey with me, because I think that This is a big thing that can help caregivers and support us, and it’s underutilized. And so let’s tap in and fast track you to those resources that can help you. That’s what I love, Nancy, about your and Sue’s podcast, The Caregivers’s Journey, is that it’s a very practical and pragmatic. Tell us about, you know, what is the Caregivers’s Journey podcast? Why would a caregiver want to listen to it? There are, um, There are a lot of day to day dementia caregiving tasks that, as you said, we’re caregivers, we’re new to this, we have no idea.

We’re, we’re going blindly down the tunnel, hopefully catching things as before they fall on the ground, and Sue and I both were very frustrated with, where’s the practical day to day caregiving advice, the things that you need to know to handle bathing and dressing, delusions. When to call in hospice, when to call in palliative care, incontinence. We have 5 episodes on incontinence, everything from how to prepare for incontinence to how to handle bed bound incontinence, because these are things that we didn’t know, but we had to deal with.

And so we decided that we would format an advice on how to podcast. So it’s different. Average podcast is about 25 minutes. We give an overview and then we talk about tips and we have one on. Episode 33, the realities of caregiver self-care, where Elizabeth is our guest and our expert on caregiver self-care, because the reality is you want to hear these things and be aware of them, and we know dementia family caregivers’s time is very limited, and we want you to be able to search on a topic, pull it together, and then quickly learn something about that topic.

Your time is precious and that you You’re achieving your mission. It’s very good and you, I know you well prepared for it. You do, you call on the experts to get the advice and I appreciated being, being one of your guests on the show. Do you think that your content, your roadmap, your podcast could also benefit a non-dementia caregiver? We definitely have things that can benefit non-dementia caregivers like hospice and palliative care and caregiver self-care. So what’s an elder law attorney and when to call one? There is a lot of stuff that’s out there that’s not dementia specific, but we do tend to focus, make sure that we’re thinking about dementia family caregivers when we talk about those topics.

But you’re right. I think so, because dementia has its own nuances of everything, right? And if you’ve met one person with dementia, you met one person with dementia, but you’ve got, you know, between the two of you have quite a few different experiences to pull from. So it’s great. We’re going to, of course, link to that in the, in the. show notes. Well, let’s switch gears and talk a little bit about self-care. We talked about, we’ve already covered some stuff, the traveling, the going out at night is amazing.

And, you know, how did it, how did it click for you though, that you needed to care for yourself while caring for other people? Let’s see, and about 6 years into my 5.5 years into my husband’s journey, I was still doing all the caregiving myself. I was still working at that point, I was working. Part I’d been working part time for about a year, um, but was still doing everything myself, getting up at 4 o’clock in the morning so I could get my exercise in before he woke up and you know, the the drill on how it goes.

And um I was, I had some friends. My best friend passed away from ALS in June of 250 and my husband was going downhill. And we went on what Sue and I like to describe as the vacation after the last vacation you should have gone on. And so the trip after the last trip we went on that uh after my uh best friend passed away, and that was a disaster and a nightmare. And he was not sleeping, he was staying awake for 250 days straight and then sleeping for a day and then staying awake.

And we tried everything, you know, with the doctors trying to get the drugs right, you know, if he wasn’t sleeping, then I wasn’t sleeping. And finally the doctor said it might be the Depazil and for, for that’s the generic name for ercept, which is the main cognitive medication that people living with dementia are taking. And he said sometimes it builds up over time and it could be causing the sleep problems. So we took him off Denepezil with slowly over the course of 250 or 250 days, it fixed the sleep problems, so that was it.

But his cognitive capability went from like a 250. To it too. I mean, he just, it just ripped him. Yeah, I didn’t realize how well it was working until we didn’t weren’t taking it anymore. So I got a part time. I had already been easing our way into a part-time caregiver. She, I had her coming and at the funeral for my best friend, some of our old friends who I hadn’t seen in a long time, said, um, would you like to go to lunch? Well, now I had a part-time caregiver coming, so I thought, you know, I can, I can squeeze in a lunch.

So I went to lunch. With our good friends, and you, I think I’m perfectly fine. Well, everything I just told you you’re a frog boiling in water. You don’t know. No, no idea. And I’m the type of person where I am perfectly fine. I’ll be sick and then really, really sick and then 22 days later I’m fine, I’m fine, I’m fine. 403 days later I’ll say, boy, I was really sick 240 days ago. Did you guys notice? You know, I just don’t let myself think it. So I went to lunch with them.

We sit down to lunch. These are 210 of my closest friends from a long time ago. And we sit down to lunch and the first one says, so how’s it going? I burst into tears, and I’m like, I had, I mean, that surprised me as much as it surprised them. So I realized it wasn’t going so well as the net. I over time that quickly got us into those, I still go to lunch with those ladies. This was summer of 2300. I still go to lunch with them once a month.

That got me into, I’ve got to find a better way. I went from my way back. Uh-huh, 4 half days a week of a caregiver to 7 4-hour days from a caregiver to 5 8-hour days of a caregiver to eventually 7 103-hour days of a caregiver because I realized I have got to have more time to be helping and not doing the day to day caregiving and more time for, for me to be able to support me. And you know, caregiving for someone living with dementia, I’d love to think it’s a one person activity.

It is not. Even with a caregiver 8 hours a day, I was on caregiving duty for the other, whatever that turns out to be 16 hours a day, and many things we did together, especially what’s incontinence starts. It was a two person activity as much as we tag teaming, caregiving, solo caregiving in any situation is a recipe for disaster. I’m glad you figured, you know, figured it out. Um, hopefully we can, we can get people before they’re 4 years into caregiving. Because it’s, you’ve got to figure out how to make it sustainable, where we just, it’s not at a cost.

We don’t lose two people, right? We lose two people in these diseases. That’s horrible, you know, especially for your boys and your family members. Well, I’m glad, I’m glad that that it’s still intentional, you know, I think. I think those are the other key things I think people want, I want people to pick up on is that she’s deliberate and intentional and that you, you didn’t just recognize it, but you took some action to do something about it because that’s what the, that’s the antidote for burnout and the antidote for worry and your fears is taking some action on things that you can do.

You know, Elizabeth, yeah, oh, go ahead, finish that. No, no, go ahead, go ahead. That’s one of the things that we talk about now because that’s a lesson learned, right, is that when you get the diagnosis of your loved one gets a diagnosis of dementia, you just got a diagnosis of caregiver, you’re now responsible for caregiving for two people, 50/50. And your first reaction is, well, of course, my person, right? Well, of course, your person, but the second person you have to caregive for is you, and you have to.

Give it 50/50, or, or you will be no good as a caregiver anyway. So you, you won’t be helping your person living with dementia if you’re not taking care of yourself. And I, and I wish that I had and it’s amazing how you feel like that doesn’t feel right, but listen to us, we’re telling you it is right. You have to spend 50% of the time focused on how you’re caring for yourself. It’s like that. Moonstruck movie with Cher when she’s like, snap out of it. She snaps the snap out of it.

This is not working for you. And the definition of insanity doing the same thing, and I love the fifty-fifty thing. And I do think that even when our loved ones and care recipients get a diagnosis, they should put it on our health chart that we are family caregivers because we are at risk for many, many different things. It’s in the data, you know, we can. Shared the latest data from the National Alliance Caregiving in the AARP, but you are at risk for health decisions and I’ve seen it, you know, with my dad and caring for my mom and, you know, maybe he would still be here had we had, you know, some, some things in place to better support him and caring for my mom and my brother.

So, but we do the best we can with the information we have at the time. It’s not saying that to beat myself up. I don’t want to beat yourself up for, you know, but, but learn from, from others. who have walked in the shoes and are still walking in the shoes and, and really take that to heart. One of the things that was really helpful for me, Nancy, was journaling. I don’t do it, I, in all honesty, I don’t do a ton of it anymore. But early on in my journey, big journaler, big writer, I had to process the emotions.

I would weep and cry frequently. But for many people, I, I felt like it wasn’t a very accessible thing if they, to, to try on. And so I wrote the Just For You daily self. journal so that people could try this on. They could help, help put some focus back on themselves to prioritize their own health and wellness, written with caregivers in mind, but certainly could be for other people. And it’s prompted because I found that there was some comfort in a prompted journal too, where I didn’t have to think about what I wanted to write about, but I could just put that some words on, on paper.

So, a couple of things I pulled out, so we’re going to do a little lightning round, no wrong answers here. Is, do you feel like you’re enough, Nancy? You know, I’m not sure I did as much as I should when I was caregiving. I do feel now, but when I was caregiving, you know, I’ll tell this quick story. I know you’re not trying to turn this into a long thing, but uh I Worked very, very hard as a caregiver to put myself in a position to not feel like after it was all over.

I saw so many people I regrets after it was all over, and I told myself I am doing everything I can now, and I am not going to be one of those people who has regrets afterwards. And put and I retired in towards, you know, the last couple of years of my husband’s caregiving journey. I went part time, then I retired. I just to make sure I could focus on what I needed to focus on between my husband and my father-in-law. My father. And darn if it wasn’t 2 or 3 weeks after my husband passed away that I was beating myself up over whether I did everything I could do.

I’ve come to appreciate that that’s probably just a natural part of grief, but it is interesting how I did not feel that while it was happening, but after my husband passed, I did have a period of time where I really struggled with, did I do everything I could do. Well, from where I was sitting above and beyond and back. Forth and all around and all of the different directions. But maybe to your point, it is a natural thing. And I think after caregiving ends, we do a lot of reflection about stuff and we can certainly, you know, did I do enough visits?

Do do I do, but we also have to take into account that we got to put food on the table. We have to pay the bills. We’ve got to, you know, make sure the trash is out on a Friday and like there’s a lot of stuff that is being pulled in different directions. And so it’s that nest of hungry birds analogy where you know We have to have faith that we are smart enough to discern who needed our attention then. And I’m absolutely certain that you could have looked in the mirror every night and said, Gosh, darn it, I gave it my all today and and was enough for the people who needed me.

Well, what tiny moments are having a big impact in your life right now, right? You know, the little things right now are the majority of it is feedback we’re getting about people who feel like they’ve been helped. Last week, I did a, um, session at a dementia conference, about 40. people and I did a session on the new roadmap guide that Sue and I created, and I got an email yesterday from the CEO of the organization that put the conference on, and he said kudos to you. He said, I saw someone that was at our conference today, and he said the most valuable information he got out of the entire conference was from the caregiver’s journey presentation and the roadmap that you created.

Those things. Just fuel me and you know, we get a little something like that every week or every other week and they just fuel you like, OK, keep going, this is making a difference, even if it’s making a difference for one or two people, it’s making a difference in helping somebody. Yeah, because we put, I mean we do this and we wonder like who’s exactly who does it interact with and then, I mean, I have thought of many times in the past 10 years about, you know, I’m done, I’m gonna, you know, find another job and call it in and whatever.

And yet there, those things are like tips in your tip jar. So if you haven’t taken a moment to kind of just tell somebody, whether it’s our stuff or somebody else’s stuff who might need to hear that, you know, the reviews, the little writing LinkedIn recommendations, like all of those things matter, especially when, you know, we’re trying to make a living doing something that’s very, can be challenging, making, making a living in as well, that that’s, it’s so important to keep us going, like, we need to be fueled and energized too, like, We just don’t have unlimited sources of that to keep going.

And so we have been that certainly for each other, where we encourage each other. And that is one of the reasons I’m looking forward to cruising with you and Sue and some of the other co-hosts of the cruise because we need that. You know, we’ve got to fuel ourselves so that we can get back into that space. So I’m so glad that you’re getting the recognition you deserve because it is, I mean, think about how much you have done in such a short time with the caregiver’s journey.

And the roadmap is, is, um, is what people need. They’re thirsty for it, hungry for it, um, huge time saver. So, last question I’m gonna ask you is, what do you want more of in your life right now, or travel? I don’t know how I can do more travel, but if I could, I would. Yeah, yeah. I mean, sister’s got to retire from one. You need some new travel. That would help me so much. Try some of the people on on the cruise, see if they’re going to make good travel buddies with you, because that is, that is so critical.

We, we are so grateful for the people that we connect and travel well with as families, as couples, as individuals. So what’s, what are some of the spots on your travel bucket list left to go on? My Portugal, you mentioned, that’s on our bucket list. I got notes for you. Thank you. And we’re. We can combine that with a Morocco trip. So do Portugal and Morocco kind of at the same time. Turkey’s on my list. We went to Egypt last year, second favorite trip ever, by the way, it was unbelievable down the Nile and all that, we went on a tour, so we didn’t have to sort everything out.

We’re and and the whole world is so much for us to see, but we’re dying to go back to Cairo and see the new museum that they just built and then go up to Alexandria because we haven’t done that. So we’re not big on going back. Places because we want to go to new places all the time, but we can’t stand it. We’re dying to go back to Egypt. No, it’s so interesting. I’m a little nervous to go to the Middle East without somebody who’s been there, done that.

It’s not nerve-wracking at all in Egypt. Egypt is everybody’s friend, so they’re, they’re, they’re the neutral people in the middle that everybody’s trying to leverage. I mean, all these places rely on travel and I’m from Morocco, you need to talk to my daughter Natalie. She’s, I think it’s her most fun place that she’s been to, and she does quite a bit. All her extra money. To traveling. Y’all will be have, we’ll just put you guys in pool chairs and you can have, have that out there. Well, Nancy, I, I knew it.

You didn’t surprise me, but you’ve been a delight to chat with today. I’m excited to, for people to get, have the resources that you and Sue have put out there. I hope that they connect with your podcast. I’m sure you’d be open for some travel tips too, if you, if anybody’s heard that and wants that. And just thank you. Thank you so much for the support that you give yourself, and thank you for all the thanks for the things that you’ve done. Maybe you didn’t get the things for.

Well, thank you so much. I appreciate it. And thanks for letting me be on your podcast, and I’ve been listening to it for so long. This is, you know, this is serendipity. It’s kind of interesting when it comes out on the other side. So, yes. Well, it’s going to come out during National Families Caregivers Month, which and it’s, I think it’s the, the season bookend. Um, I take a break between mid November and mid December. So if you’re listening to this, you’ve got time to enjoy the holidays, to listen to some other podcasts, or to go back and listen to some old episodes of Happy Healthy Caregiver.

Um, and with the caregiver’s journey as well. So, and just enjoy yourselves in those, in those moments, it’s hard, it’s hard. It’s hard enough with all the holiday stuff. So take the break that you need. Thank you so much, Nancy. We’ll talk to you soon. Hello, podcast listener. If you’re caring for a loved one with Alzheimer’s or dementia, you don’t want to miss All’s Authors podcasts, untangling Alzheimer’s. Dementia. I’m your host Mary Anne Chuuko, a registered nurse, author, and dementia daughter. In each episode, I interview one of our 300+ authors about their personal dementia story and why they chose to write about it, sharing intimate details and painfully obtained knowledge to help you on your own journey.

We share a variety of. Stories across all diagnoses and from a range of caregiving experiences. You can find us on your favorite podcast platform in the whole Care Network. Remember, you are not alone. One can sing a lonely song, but we chose to form a choir and create harmony. Find us at allsauthors.com. See you soon. Thanks for listening to the Happy Healthy Caregiver podcast on the Whole Care Network. I hope this episode provided encouragement and practical tips to infuse into your life. You’ll find the show notes and all the resources mentioned at Hahealthy caregiver.com.

I also invite you to check out previous episodes of the podcast that you may have missed. If you enjoyed the show, be sure to subscribe so you never miss an episode. Ratings and reviews also help others discover the podcast, and sharing with a fellow caregiver is a great way to spread support. Stay connected with me between the episodes by following Happy Healthy caregiver on your favorite social media platforms and subscribe to the weekly newsletter, where every week I share something happy, healthy, and care related. Just visit happyhealthycaeggiver.

com to join. Until our next episode, I’m Elizabeth Miller with a reminder to take care of you. Are you still here? Well, it’s time for the disclaimer. I am not a medical, legal or financial professional and I am not providing medical, financial or legal advice. If you have questions related to these topics, please seek a qualified. Profession. I have taken care to spotlight family caregivers and experts, but their opinions are theirs alone. This podcast is copyrighted and no part can be reproduced without the written permission of Happy Healthy caregiver LLC.

Thanks again for listening to the Happy Healthy caregiver podcast on the whole Care Network.