Life After Caregiving: A Conversation with Breeda Miller

What does life look like when caregiving ends — not the tasks, but the identity, the vigilance, the emotional weight you carried for years? In this episode, Breeda Miller returns to Island Treasures Podcast to share an honest, comprehensive look at the chapter that followed caring for her mom.

Breeda talks about the personal programming that didn’t disappear right away, the instinct to stay on high alert long after the role was over, and the clarity that came only after the urgency and immediacy of caregiving fell away. She describes the gradual process of making sense of the many experiences she had lived through.

She also reflects on the meaning she created through storytelling — including her award‑winning one‑woman play, Mrs. Kelly’s Journey Home, and the family story books she now builds to preserve the context behind cherished photos - 'turning tubs of guilt into familiy stories'. These projects became a way to honour her mother, understand her own journey, and to help others preserve their own family stories.

Breeda shares the simple daily practices that support her now: moving her body, taking a restorative 20‑minute nap, and choosing one important thing to do each day. And even though caregiving for her mom has ended, she speaks candidly about the ongoing caregiving she does for her two adult sons, and the concern she carries as she plans for their future.

This conversation offers a grounded, compassionate look at what comes after one season of caregiving — the questions, the shifts, the meaning, and the permission to slow down and give yourself grace. It’s a companion for anyone navigating their own life after caregiving.

(Thank you to Pixabay Folk Acoustic Guitar 138361)

Transcript

Speaker 1 0:00

Thank you for tuning in to the Island Treasures podcast. We value the insights shared by our guests and hosts. But it's important to note that their personal experiences are intended to inform and encourage, and not to replace professional, legal, or medical advice. With that, we are ready for today's exciting episode. Hello and welcome to Island Treasures Podcast. For years, we've walked alongside caregivers in the midst of their caregiving journey, offering resources, support, encouragement, and community. Now as we shift our focus, we'll be exploring what comes after caregiving. I'm your host, Alison van Schie, inviting you into conversations with former caregivers. Each episode features honest reflections on what comes next stories of resilience, renewal, and rediscovery. I'm glad you're here. Let's explore new treasures together. If you listen to season three of the Island Treasures podcasts, you'll remember today's guest for her humor, her candor, and her ability to captivate us with her storytelling, even about caregiving. She returns to the podcast today to share what life was like once caregiving for her mum ended, letting go of old habits, experiencing emotions in ways that weren't necessarily predictable, and finding her way through losing her mom to living in the after of caregiving. So without further delay, join me now as I welcome Breeda Miller. Welcome, Breeda.

Speaker 2:04

Oh, Alison, I am so delighted to be here. And uh thank you so much for inviting me today.

Speaker 1 2:10

Thank you, Breeda. It's my pleasure. And today we're focusing on life after caregiving. So a little bit different. Um, but I'd like you to share briefly what your caregiving journey was to give that background for those who haven't met you before, and then we'll go from there.

Speaker 2:27

Well, one of the sentences that pops in my head immediately when people ask me, you know, how did this begin or what's going on here? And I said, you know, I didn't know what I didn't know. All I knew was that I loved my mother. And that encapsulates um my mindset and my starting point. Um, and I've always considered myself as a resourceful person. And boy, did I need that because I had no frame of reference of what is normal. My parents emigrated from Ireland right before I was born. So I did not grow up with grandparents or even elderly aunts and uncles, um, no family members that aged and then uh developed serious illnesses or became invalids or or whatever. Whenever any of my family members died, I either had met them maybe once or twice, but they were thousands of miles in an ocean away. And so it was a completely new experience for me. Just being around someone who's getting older. Yeah. And and I the thing I compared it to when I was a mother with three young children, I would go to the mommy and me groups and the preschool groups, and we would sit around and we would discuss things. And, you know, we talk about potty training and how's that going? Are you using, you know, the pull-ups or are you going with the little cloth underpants at night? You know, what are you doing? And they would grow and become more independent, and life would get a bit easier, or they could do more for themselves. And then being the caregiver for my mom, when she developed congestive heart failure and vascular dementia, it was the opposite because she was declining, she was losing skills, she wasn't gaining them. And I had no frame of reference about what is normal. Oh, oh, you know, incontinence. All I know is I had a new couch and I was very worried. But I didn't know, is that normal? And no one asked me, so you know, how's your mom doing? Are you are you using the depends or do you like the Costco brand? What's working? Nothing. And so I didn't know if this was a sign of a serious illness or just something to be expected or what to do. And that I think is a really important point to consider. That we have just bought a ticket to a country that we don't know much about. We don't maybe know the language, we don't know what the customs are, we don't know what to expect. And every day, especially when you're caring for someone with dementia, you know, I often likened it to uh a day at the improv, you know, without the applause. Um, and it isn't funny at the time, mostly. Sometimes, sometimes it's very funny at the time. There's a few. Um, but if you can find the grace and find the humor, even if it's a bit later, you can um be gentle with yourself and just know that on any given day you're doing your best. And on some days you're better than others. Some days you're more rested, sometimes you're less stressed. Sometimes there's not so much incoming that you actually could focus on one thing. So you felt completely alone. I did, and I had a house full. I had three young teenagers, a husband, um, several animals, and my mom was living with us. I think one of the problems for caregivers in sharing their frustration or where they're at, and this was 15 years ago, so there isn't as many wonderful resources like your podcasts and the things that you do to connect and reach out to caregivers when they're home, because many times we can't leave. Because the idea of organizing respite care or of bringing someone in is more work than you think is worth it. And that's why many don't do it. And I I always want to suggest that um it is a lot of work and it does take planning, but yes, you must do it, it is worth it for many reasons. There's a benefit to both sides to a little bit of separation and and some respite.

Speaker 1 6:52

You are a planner, though. So for you to plan respite breaks for yourself, and I know you wrote a book that is uh called 'Take a Break Before You Break'. Yeah. And I always thought that was so clever as a title, but so true for caregivers, especially. But you are a planner, so you had, and you've already shared that you are very resourceful, but you're saying that it was hard to plan for the respite breaks, and yet it was so worth it. What about the caregiver who's not skilled in planning? What about them?

Speaker 7:24

I think you'd have to find someone trustworthy that either has experience doing it so they they're not going into it cold, or they have a great relationship with the person you're caring for, and they love them. And so even if they don't have the same level of experience or knowledge that you have, you know their heart's in the right place and they're gonna do the best they can. And keep it simple and keep it short. Maybe it's an hour, maybe it's two hours, and you're gonna go to a movie, or you're going to go to the library, or you're just gonna go to a park and go for a walk and just be.

Speaker 1 8:03

So just to have a relationship with someone that you know has a really good relationship with your mom or your loved one, and then just ask them to step in for a while, just as a trial?

Speaker 8:14

Exactly, as a companion situation. How long were you caregiving for your mom? Oh gosh. Yeah, over six years. Um, and her decline, um, at first, there was no dementia for the first two years. It was more weakness and worry about her mobility. And um, and when she was in our house one day, she had one of those mystery falls where there was no reason that she fell. And I was talking to some um orthopedic surgeons, and they said, well, sometimes and she had osteoporosis in some very elderly folks. Um, they don't know if like the hip or the bone breaks and then they fall, or if they trip over something and because of the fall, the bone breaks. So they don't know which came first. And honestly, she was standing in our dining room and thank God didn't hit her head on the corner of the table and um when she fell and broke her hip and had to have surgery, it was hospitalized, and that was that was a pretty big decline when um, I think the dementia wasn't as noticeable before that. And they say when some folks are hospitalized or in any kind of a an institutional care setting, the dementia really kicks in. So um, I didn't know that.

Speaker 1 9:31

Yeah. So as we're talking about life after caregiving, like you've got all these resources and all this experience, but I'd like to walk you through or have you walk us through what it was like as mom was passing away, and what it was like to no longer have mom around anymore. And I remember you telling me you did find hospice was the best gift.

Speaker 9:56

Hospice saved my life. So, yeah, hospice care for seven months. And then I did something that at the time I did not realize it was the most mentally healthy thing I could have done. And that was as my mom was laying in her bed and really not talking much, and this was in, I'm gonna say, October, and she passed away in January, and she had been in hospice care since July. Okay. So in October, I'm sitting with her in her room, and my mind is always going. And for me to just sit and not talk or not do anything is torture. But she didn't like to watch television, and we put audio books on, but she would fall asleep, so then she couldn't follow them. I would read to her, but again, falling asleep and keeping up. And so music on CDs was one of the most comforting things I did for her regularly. And I found these CDs that had hymns from Ireland in the 1940s and 50s. So it was the music that she knew in her soul and gave her great comfort and she loved it. And on repeat, okay, we would play those and other, you know, music from that era that really comforted her and she enjoyed. Anyway, I'm sitting there twiddling my thumbs, like, okay, what am I gonna do? Can't be on the phone, can't, you know. And I realized I was the keeper of all the family photos and stories because my mom and I were pretty close, and I knew these stories in my bones, but realized I have four brothers and they didn't know them as well as I did. And they may not have heard any of them, you know, that that I knew. And I was never a scrapbooking kind of a girl. I was about the pictures and more importantly, the stories behind the pictures, the context. Anyway, so I thought, okay, I don't want to divvy these up, but I don't I feel like I'm selfish if I keep everything. So I thought, well, what if I did like a digital book? And then it was not just a photo album, but it told their story. And that's how the book came about. And in fact, I had it printed. And this is the book, and it's called An Irish Blessing, and it is the story of my parents, and it ended up being the whole family story about their immigration and all that. She was tiny to begin with, as we know. Um, but instead of focusing on that, I'm looking at my laptop and I've digitized all these photos and I'm trying to think about how to build it. And I'm looking at this vibrant young woman who had so much courage to move and leave her family. She had never left Dublin and moved to America. Um, and I didn't realize it at the time how healthy that was for me to do. It was constructive, it kept my mind going and focused on her, but in a very positive, loving way. So I wasn't just distracted on my laptop doing something that was killing time or what you know what I'm saying. So that was through the end of her life. One of the things that I was um it took my energy off of grieving her and focusing on celebrating her.

Speaker 1 13:32

Beautiful. I see you as walking alongside her through the different phases of her life, seeing her as a vibrant, young, courageous woman. I felt you were visiting her all the way through when she is on the bed in the fetal position.

Speaker 13:50

Yeah.

Speaker 1 13:50

But you're seeing her live her life through the photos.

Speaker 13:54

And earlier when I started it, and she was still pretty coherent about things, and I'd show her a picture and she would look up and she'd say, Where did you get that picture? And I'd say, Mom, it's yours, you know. And um, the other gift was her sister was younger than my mother and um lives in Michigan as well. And um, after she passed, when I was still working on the book, because it took me a very long time to really do it, we would go through the pictures and she could help me know who was who. And I said, There's a picture of my brothers, three brothers in Ireland, and then there's a little blonde boy. No one in my family was blonde, um, little blonde boy sitting in a car, a toy car in the house. And I said, Who's that? Because it my auntie Lily had 11 kids, so you know, could have been one of those. I don't know. And she knew them all, and she said, No, I don't know. And so we decided it was a little neighbor boy, just over for a visit. I didn't want to identify it incorrectly, but then we looked at each other and I said, You know, you're the last woman standing. So who's gonna argue? So we didn't stress out about that. We did not, uh, I did as much as I sent the images to my cousins in Ireland and asked them to help identify people and help me get dates and names right because my dad had eight siblings and my mom had four. Um, so it was a lot of people to kind of keep track of that many I never met.

Speaker 1 15:24

Yeah, it's sad that comment you made that she's the last one standing. It's it's sad, but that story is living on in the book.

Speaker 15:32

And she's still going strong. She's 93 now. 93 and um yeah, I we're very, very fortunate.

Speaker 1 15:41

So you were pre-grieving, but you were working through your grief in a happy, happy way, a positive way. So when she did pass away, how did you transition then? How did you deal with that?

Speaker 15:55

Um, I was very shocked that I didn't feel a deep sense of grief. And I realized because it wasn't a shock, but I had been grieving for years, but as she declined, as she became less of the vibrant Mary Kelly that we knew and loved so well, um, that was harder and sadder. And at the end, I also felt very guilty for the relief that I felt for myself and for her. Um so I had to give myself grace on that and say, just because I'm not in puddles all day long, it doesn't mean that I didn't love her. And it doesn't mean that that I'm not saddened by her loss, but I'm happy that she's in my mind in heaven, she's herself again. And that's how I remember her, and that's how I think of her. And um, not a day goes by that Jim and I, my husband, um, that we don't make some comment or reference. And I've um, you know, been making her brown bread and doing making some things whenever I cook and I I do things that I think, oh yeah, that was the way mom did it. Oh yeah, you know, that was great. Um, so that was important. But the thing that that I realized, and I had a group of girlfriends who would get together all the time, and I hadn't gone out with them for happy hour, and I don't drink, so it's always ice water or iced tea for me, but um, they'd be enjoying their wine and and I hadn't gone for so long because I just couldn't justify it. And it was a distance from, you know, I live in this small town and they are in a bigger city, and I just couldn't go and I couldn't tear myself away for those kinds of things. Well, anyway, she passed away, and then about two or three months later, they called me and they said, Brita, are you are you up for it? Would you like to join us? And it was such a shock that I thought, oh, I could do that. And I remember going and the happy hour was from three to six. And so we got there at like three and ordered the snacks, which was the highlight for me. And uh at 4:30, I looked at my watch and I thought, oh, I thought I gotta go. I gotta go, I gotta make dinner for mom because my kids would be happy to eat pizza, but mom couldn't eat pizza for dinner. And I had a basic baked potato, a little piece of chicken cutlet, and some broccoli, and she would be thrilled with that. And it'd be, I could cut it up and it would be a good, easy dinner that I know she would like because taco night was not gonna work for mom. Anyway, I um I remembered feeling like oh, I it was like a leash, and I was no longer on that leash of my watch in the time of day for either medication or preparing a special meal or whatever I thought I had to do, and it was jarring, it was really jarring. A leash, that's quite the visual. Yeah, you were tethered. I was tethered, absolutely, and I couldn't go too far away for too long, and I needed to come back. Yeah, and so when that no longer existed, and it took a long time, it took me maybe six months, seven months after she died for me to no longer feel that tug at that time of day. Like, oh, I gotta get back. Oh, I got I gotta get this prescription filled. And one interesting thing, my mom loved um you know, Irish biscuits, and so Jacob's cream crackers was one of her favorite, or some marmalade or something like that. And I would be in the grocery store and I would see the package of Jacob's cream crackers and think, oh, I need to get more of those. And I thought, oh, I I think I have a couple packages still unopened, and I didn't need to buy more, but um, now I buy them just for nostalgia.

Speaker 1 19:53

Yeah, yeah. So sharing that it took time to break that connection or break break that tether.

Speaker 20:02

Yeah, and it's mixed. I mean, sometimes it's it's happy, it's joyful. It's like, oh yeah, we don't have to worry about that anymore. Okay. Or yeah, I I don't worry about that anymore. So it's it's bittersweet, but yeah.

Speaker 1 20:19

Thank you. That you know, I I want to hear those transitional stories because it'll help other people.

Speaker 20:27

I hope so because one of the things I've learned is that this experience, uh while it's very personal and every situation is different, every person, you know, I was grateful my mother was I could manage her, you know, she was a small person, so I could lift her and do that. Um, but also mostly she was pretty sweet and charming. Um, trust me, she had her moments, but she was never violent. I was never fearful of that she might hurt me or hurt herself or or do things um other than worrying about her falling, you know, naturally. Um, and that's not true for everyone. And and then I think people get in the bind of, what am I gonna do? I I I wanted to commit. I, you know, I love my my person, my mom, my dad, my husband, whatever. Um but I just can't do it anymore, or I'm not capable, or I'm worried that uh I know someone whose husband developed Alzheimer's disease. He was a very sweet, uh, soft-spoken gentleman. His personality changed completely and he became violent. And she was uh, you know, in her 80s and she could not uh manage him. And and she it broke her heart that she had to uh put him in a memory care facility. That was not her choice to do it, but she had no choice. And I think people uh who are in those spots have to recognize the reality of the situation and that if your intention is about safety, about your safety or their safety, they need to give themselves permission to say if they had. Made a promise to never do that, which by the way, don't ever do that. Um, but if they did, they need to say, circumstances have changed. And I have to do this and not to feel guilty about it. As long as they, you know, do the very best they can, they find the best facility that they're able to, um, that's available to them. Um, we have to give ourselves grace.

unknown 22:25

Yeah.

Speaker 22:26

And not one more thing to feel guilty about. For sure.

Speaker 1 22:29

And you shared that he was not the same man as when if she had made that promise, she would have made it when he was gentle. He was a gentleman, he was kind. And then when the dementia hit, it was like a totally different person. That promise was to the other man.

unknown 22:49

Yeah, yeah.

Speaker 1 22:51

But yeah, you you talk about the grace, and you had to give yourself grace. It is time to give grace. And thank you for making that very valid point that it's not easy, not everyone is your mom, you know. Like, yeah, yeah.

Speaker 23:05

No, I I fully recognize that. And when I tell, um, you know, I wrote the play and the book, Mrs. Kelly's Journey Home, and I I try to find experiences that can lighten the heart, you know, and that can say, even in really hard times, maybe we can find the joy. And remembering those stories in a joyful way really helped me. And that's not to say that it happened every day and that we may not find the joy in that particular moment. Um, but many times it's there if we look for it and things to treasure.

Speaker 1 23:42

So when you are in the after-caregiving stage, you have the time to look back and perhaps through the lens of joy. Yeah. That you didn't have during that very difficult time.

Speaker 23:56

No, when you're in the throes of it, you can't see beyond what is right in front of you. And it might be, you know, a soiled uh underpants or a mess in the bathroom or a refusal to eat or just the sheer exhaustion. I had a baby monitor. Our bedroom was upstairs, and my mom's bedroom was on the first floor in this. We live in a big old farmhouse. I had a baby monitor so I could hear if mom needed or called out. And what I found out was that in the middle of the night, she would be rustling tissues or getting something next to the bed and had a plastic bag for um garbage, you know, to go in, like use tissues. Just the sound of that would wake me up. High alert. High alert constantly is exhausting. And at one point near the end, the social worker I she gave me permission. She said, Breeda, you have to turn off that baby monitor. Your mom's not getting up, she's not going to be able to get up and walk out of bed. We have barriers, she's not gonna fall out of bed, she's not moving. You need to turn off the baby monitor. And her telling me that it was okay to do that was huge. Huge.

Speaker 1 25:11

I'm guessing it hadn't occurred to you that you could turn it off.

Speaker 25:15

No, no, and I would have felt very guilty if I had just decided on my own, like, I don't care, or I'm done, or all those things, self-talk, you know, that can be very negative. Um, but this was a social worker who looked at me and when I told her how I wasn't sleeping and how the baby monitor, you know, just so tense about what's next and the anticipatory grief I was experiencing because, you know, they had said to me, um, one of the famous lines my mom would say, we'd be in a restaurant and she'd be drinking her coffee because she would never drink tea in an American restaurant because blasphemy, you know, lukewarm little metal pot and the tea barely said hello to the hot water, you know, and they took it out. That's how she became a coffee drinker. Oh, anyway, but she would enjoy it at the end of the meal very slowly, and we'd be like, Mom, um, you know, we gotta go. And she'd say, I will not be rushed. So Jim actually wanted to put that on her headstone. Oh no, you know, but the the hospice workers kept telling me, you know, your mom, she's something else, she's hanging on. Like we thought this was the weekend. We thought, you know, within days, and they told me that for two weeks, that they thought, you know, today is probably the day, or you know, and so I was on high alert, as you say, for a really long time, which is exhausting physically, mentally, and just to your whole nervous system. Yeah. So um, it's really important to recognize that. I will not be rushed. I will not be rushed.

Speaker 1 26:59

I know I'm not gonna die yet. On my schedule, not yours. Yeah. But now the years have passed, and you've done some remarkable things. Um, reflecting on the lessons that you learned, the takeaways that you had from your experiences. Um even putting that book together was the catalyst to writing the play and um performing the play, the play that I got to see. I actually went to Ireland to meet Breeda and to watch her play. And it came from the first episode we recorded together after we had that discussion. I ran upstairs, I said to my husband, we're going to Ireland. And we did, and it was all because of Breeda.

Speaker 27:56

It was a great trip, wasn't it?

Speaker 1 27:58

Oh, it was fabulous.

Speaker 28:00

Yeah, yeah. You know, it's interesting. So it's a one-woman show, and I spend time in the first act telling people about really introducing them to Mrs. Kelly. It's called Mrs. Kelly's Journey Home. And I wanted to give people context. This was a vibrant, vivacious, spunky little Irish woman, and some of the misadventures about coming to America and the adjustment to becoming American, so that when we got into the caregiving part in act two, it really made sense the contrast of her decline and her attitude, and just you know, who she was as a person. Um, and then there's some very um poignant moments, very tense moments in act two when I'm over the edge or she's actively dying. And I didn't want to drag it out, you know, and I'd watched many films and read books and plays about people with dementia, and I felt they kind of um did a fine job talking about how horrible it is because it doesn't end well, it's not a happy ending. And I wanted this story to be different, I wanted it to be about finding the joy and about coming to terms with this experience. And um, so people have said to me, Breeda, how can you perform? I've performed the show over 50 times, and they said, How can you do that? Isn't it like PTSD? I mean, you're reliving it, and oh my god. And I said, you know, at first it was really hard. And at first I couldn't get through it without really crying and feeling it very deeply. And then, and I I I performed it now over four years, and you know, all over the place, but I've healed, you know, and more importantly, I know how it ends. I know how it ends, and I am at peace with how it ends, and I feel that I was I I I use myself as a cautionary tale, you know, don't be me, don't let yourself reach that point where you can't even make a pie, right?

unknown 30:07

Yeah.

Speaker 30:08

Um, but that I learned so many powerful things, and that I thought by telling these stories as honestly as I could, uh, without chewing the scenery and and over-emphasizing the really bad parts, but acknowledging them, that that could help people. And that's what I've learned is um people have told me that it's a healing experience and that it was very powerful. And I can't think of a better way to honor my mom.

Speaker 1 30:38

Oh, it was definitely honoring to your mom. It was very uplifting. And I know what you're saying, many medium bring us down when we're talking about dementia, talking about end of life. They bring us down. But yes, it was heartwarming, it was positive, it was uplifting. There was joy, there was laughter, there were tears. There were tears in that performance. Um, I love that you just said that you were healed through it. But we don't want to give the impression that if you write your own play and perform it over four years, that you're gonna be healed. Um, but for you, and you used it also to further the cause against dementia to raise awareness.

Speaker 31:27

And and really, uh as I mentioned before about you know, the depends or incontinence, to allow people an opportunity to talk about it. And and so many people experience this the sense of ice the three things that I learned as a caregiver that surprised me at how prevalent they were and how central they were to the experience. And that was exhaustion, frustration, and isolation. I didn't see them coming, and I didn't prepare for them because I didn't know what to expect. And so that's one thing I think through the play and through the book that that I can help people at the very least. I don't have, I mean, I certainly don't have all the answers or all the solutions, but I think creating that level of awareness and opportunity for people to speak about it, because the other thing I realized is that we think that everybody else is doing it better, that everybody else has it figured out, and we're the only one who's just saying, I don't know what to do, I don't know who to call, I don't know, right? And I think that knowledge that nobody has it figured out, especially with dementia, because it changes so often that you know the meal that they enjoyed yesterday is something they're not interested in at all. A favorite television program or a movie that used to bring them joy, and so you're constantly trying to find the next thing that's gonna work. Maybe they were fine taking a shower last week, and this week the idea of the water is terrifying. So the agility of your brain to be resourceful and to think of the next thing means that it's beyond exhausting because it's relentless.

Speaker 1 33:22

So what you're saying is it's reactionary. You have to be very good at reacting.

Speaker 33:27

You do, and not take it personally. Oh like if that baked potato and that, you know, a little bit of chicken breast and broccoli, which was tasty and delicious last week, is now it's it's not because they're trying to be difficult. It's not that they're criticizing your cooking or anything. Maybe their taste buds are changing, maybe they can't chew as well. Maybe it just has a you know, it's it's different. I don't know. But you you have to um set your ego aside and say, okay, maybe we're talking oatmeal. Who knows?

Speaker 1 34:02

Yeah. Take the ego out of it, take the emotion out of it. It's not personal, but it is personal, it's your loved one.

Speaker 34:11

It is, and then if you have siblings or other people who are not in the day-to-day, another thing I think about um remembering was when mom um she would be on, my brothers would come for a visit. Oh, yeah, and all of a sudden she's like, They're coming. Oh, and you know, they drove all the way and they came to see me. And you know, aren't they the best? Aren't they great? And me, the schlub is here 24-7, you know, doing everything. And then when a minute they leave, she's deflated and exhausted. And then they would say to me, Well, I don't know what you're talking about. She seems great, she seems really sharp. Yeah. And and that's a very common thing, whether what's the word, showtime, maybe would be the word. Um, because her sense of herself is she used every bit of energy she had to show them that she was herself, that she could muster on those days, not not every time, but I remember feeling like you've got to be kidding me. Like this is not the woman I'm taking care of, you know, seven days a week because she's, you know, on because the boys are here. So that's another important thing to really be mindful of because um, when you're tired and exhausted and the unfairness of it all, it's unfair to her that at this stage in her life that she's having to have these experiences. And um, you know, one of the most prevalent things that people talk about is their loved one all of a sudden feeling disoriented and saying, I want to go home, and being really agitated and that they want to go home. And what I learned is it means they're afraid. It's nothing about you, it's not about this, it's that they are unsettled, they feel unsafe. And the only bit of safety that makes sense to them is being in their own home. They might be in their own home, but it doesn't look like it to them, where they don't have that feeling. So the response is not to argue with them or tell them, but you are home, but to find a memory, to find a connection that they find joy telling a story about, or you know, listening to a song or um going through a photo album or something that's going to help them feel safe and connected till that moment of anxiety passes. But if you don't know that and you've never had that experience, it can just be horribly upsetting and offensive to many caregivers who don't understand that or who don't have that experience.

Speaker 1 36:52

Yeah, so it's a grounding technique you need to find. But like you say, they say, I want to go home, I want to go home all the time.

Speaker 37:03

So if you find that connection that they need that makes them feel secure, that's a very And I think about having it in your hip pocket because the connection that you tried, like putting on the the favorite song or the music, um, isn't working today. So maybe then it's like, you know, saying, Where was the house when you were a little girl? What was your favorite room? Or something that's a a long-held memory, an old memory, um, can just help them get out of that tense situation of fear that can maybe move you to another place. But you have to be resourceful and you have to have the presence of mind to even think of that when you're just tearing your hair out because you know they're in their own home or they're in your home, which is now their home, or they're in um another place that is their home. But they don't recognize it. One thing my mom said that I had no idea about is that she said she felt disoriented. She says, This looks like my room and my things, but it feels like it's a copy, and that they didn't tell me and that they took me somewhere else, and they took all my stuff, and I'm somewhere else, and I don't like it, and I want to go back to my house. So that is such a fearful time that she was experiencing, and it's not about logic, and that's another important point to remember. It's not about logic.

Speaker 1 38:32

Your mom had the ability to express, though, that what she was feeling in a way that that came across, this isn't authentic to me. I don't feel this is real.

Speaker 38:42

Yeah, yeah, and and many people don't they don't have the ability to find those words, they're just agitated. Yeah, and um, I I remember hearing someone say one day about a person with Alzheimer's is that don't say, Oh, dad's giving me a hard time. How about dad's having a hard time? Really changes the dynamic and the way you look at it. And I tried to remember that, and I was not perfect, trust me. I remember the times my 15-year-old daughter, who was so diplomatic, would say to me, Mom, you were a little snippy with Nana today. I think you need to take a nap.

Speaker 1 39:21

She was right. Yeah, so she was stepping into the caregiver role for her own mother.

Speaker 39:27

She loved her Nana. She loved her Nana. And I was like, Mom, you can't talk to Nana like that. But you know, I certainly was not a perfect caregiver. A perfect caregiver does not exist because we're human.

Speaker 1 39:40

But give yourself the grace you talked about.

Speaker 39:42

Yep. And on any given day, you are doing the best you are able at that moment. And tomorrow hopefully would be a better day.

Speaker 1 39:53

Yeah, just to have this information in your mind though, as a current caregiver, will help. Like to know what these things mean, to know what mom is saying or dad or whomever is saying, I want to go home. But oh, that means he's not feeling safe right now.

Speaker 40:12

Yes. And it's not about you, it's not about the carrier providing the environment you're providing, it's their confusion and their anxiety, and they're on a ship that is rocking, you know, and they can't get their balance. It must be horrible.

Speaker 1 40:33

Yes, we don't know what's around the corner for us either.

Speaker 40:37

Right. Oh, I you know what? I am I've committed, I've lost like 50 pounds, and I'm exercising, and I I actually am lifting weights, which I really hate a lot.

Speaker 1 40:51

I hate it, but you're being proactive.

Speaker 40:56

I need to be proactive and I need to be as healthy as I can for as long as I can. I'm 67 now.

Speaker 1 41:03

I'm not far behind you at all. In fact, I think we're the same as far as age is just a number.

Speaker 41:10

Oh, it is. And my mom used to say, you know, age is a mind, is mind over matter, and if you don't mind, it doesn't matter. There you go.

Speaker 1 41:20

So, Breeda, you're all about sharing joy and making light out of very sometimes heavy situations. What are some suggestions or encouragement you can provide to a caregiver who is at the end of caregiving, knows that the end is imminent, and is going to be facing that transition?

Speaker 41:44

Um, such a great question. I would venture to say, very, very few caregivers have the presence of mind to even think about that because we're in the moment all the time. What is right in front of me, I can only deal with the crisis, the stress, whatever it might be at that moment. Um, so going back to what I said earlier about creating that memory book, that family book, that, as I say, was one of the most mentally healthy things I could do. So, in advance, so I I'm doing a thing now where I'm helping people to create their own family stories at libraries and things like that. And it's called turning your tubs of guilt into your family story. Because so many people say, Oh, I have these tubs and boxes and albums, and oh, what am I going to do with them? I don't even know where to begin. And if you have the presence of mind, if you can think about that, what's more as important as those images are the stories that go with the images. Because when we're gone, if our kids see these boxes of pictures without any context, we don't know their names, we don't know the year, we don't know where it is, we don't know what they were doing at that particular day. They're gonna get recycled or burnt or just put in the bin. And that's heartbreaking, I think, because people took the time to keep these treasured memories. So even if it's a matter of um thinking of maybe the top 10 moments or five moments, or looking at pictures and saying, this was a photograph that was taken at my high school graduation, and my dad had just blah blah blah. And mom, um, instead of doing a party for my girlfriends, she gave us a traditional Irish luncheon. And one of the treats in the lunch, this is true, um, was a cake. And she had baked a small gold ring, a real gold ring, in the cake. And the story was the girl that got the slice of cake with the ring on it would be the first to be married. And this was in 1976. One of my girlfriends got that slice of cake. Slice of cake. She had a serious boyfriend at the time. They did get married. She was the first of our group to get married. It didn't work out. So I feel my mother was responsible for that. And she blamed my mother all of her life. No, I'm just kidding. Um, but anyway, just remembering those stories, nothing you know, huge, and writing them down to know that she's going to be gone soon. And not that that's a another pressure or a to-do thing. But honestly, at the end of life, at the end of caregiving, there's not a lot you can do because they may or may not be mobile, they may or may not be eating. There may be times when it's a watch and wait situation. And so maybe that's a good time to write down some memories. And then at another time fill in the blanks with pictures that might go with them, or look at a picture and use that picture as a way to, oh, I remember that Christmas. Oh, or that Thanksgiving where I made the turkey and the microwave. True story. So sometimes writing those traditions down of those fun things are a great way to stir a happy memory. That's what I'm saying, suggesting, is that when you're in the midst of dealing with something and you can't do anything because you're in this watching and waiting stage, maybe that's something you could do. And if you have the ability to write, or someone in the family does, um, and it doesn't have to be fine literature because you're just recording something. But I did this whole book for my husband's family, which was much more difficult for me, even though we've been together for 40 years. Um, but his childhood and the memories that his siblings had of growing up, I had to work with them to pull those out. And it took me a very long time, but I'm I'm so grateful it's done. And um, those stories will live on, and they honor his parents and his siblings. It doesn't have to be great, it just has to be true. Just doing that can be so um therapeutic. But anyway, so the third book, which I'm looking at, tubs of guilt and boxes, are our family. So my husband, myself, and our three children who were adopted from South Korea, their stories of their growing up, different houses we've lived in, pets we've had, trips we've taken. And um, instead of being stacks of albums, you know, to go through, because I don't know about you, but our photo albums are strictly just the pictures, you know, they might be in uh cellophane, you know, yeah.

Speaker 2 46:44

And then people stick.

Speaker 46:46

Yeah, but people don't even have do photo albums anymore. It's they're all on our phones. So if the pictures are already digital, it does make it easier to do these kinds of books. So um, yeah, I just download it to this company that does it, it's free, and you can take as long as you like to make it and as many pages as you want. And uh, so that's my next big project.

Speaker 1 47:09

So that's an after caregiving project, like that fills a lot of time. So as with many caregivers after caregiving, were you struck with what do I do now? That question.

Speaker 47:24

Yeah, absolutely. Um, because your sense of identity, your purpose, your life revolves around being the caregiver, right? And all of a sudden you don't have all these doctor's appointments and you don't have people coming and going, and you don't have all these decisions to make. And at the one time, it's a great relief. And in the same breath, it's a great void. And so, how can you um navigate that? And I think grace is the word to give yourself time, don't you know, don't rush into anything or do anything if you don't have to, if you have the luxury of time. Um, but think about what now that that role is is finished, and for many of us, it's not finished. Um, there's other people that might need care in your family, and you have to be mindful that you don't become the default caregiver that people think, oh, you know, but Brita's really good at that. You know, she'll take care of so and so. She's experienced. People who are nurses, people who are in healthcare, tell me all the time that their families just assume that they will be the caregiver for mom or dad or or whomever. And they tell me it's an entirely different experience to go from a professional clinical setting, taking care of people, and then you get to go home. But then you're dealing, you're going home and you're caring for your parent or your grandparent, and the emotional dynamics, the sibling relationships, like when you're doing that as a professional in your job, you don't have any of that emotional baggage that might exist in a family caregiving situation. Yeah, it's really hard, really hard. And it it is not the same in a family caregiving situation that it is in a professional setting.

Speaker 1 49:17

Yeah. I agree. So, Breeda, what are you doing now?

Speaker 49:27

Well, it's an interesting question because I have typically been a very um active person. I have a lot of things going on, you know, whether it's planning trips, travel, you know, getting the people together to go to Ireland, um, doing the show. And I took like last year when I decided to do Jim's family book. I thought to do this properly, I need to be laser focused. And I did. And I worked on it for probably six months, often four or five hours every day. My dining room table was covered with the photos and the stacks and the boxes and the sorting and trying to wrangle five siblings and get their information and all of that was really challenging and exhausting. But I had set a deadline and just project management, right? So I went through all these steps, I got it done. And because I was focused on that, I was not focusing. Um, you know, I have this play and I was performing it, but I was also producing it and trying to get bookings and doing all that, which was exhausting. You know, they say show business is a hard business. It's not the show, it's the business. That's the hard bit. And I I finally realized, yeah, I'm tired of the hustle. So I gave myself permission to take a pause, which was really hard for me to do because I'm used to just being go, go, go. What's next? What are we gonna do? And so now I'm retired. Um, if someone wants to do a performance or a show, like a fundraiser or a benefit for an organization, I'm there. I can do it. I would love it. But I'm not actively looking to fill my calendar. And for many reasons, um, because I'm still in a caregiving role in that our two adult sons are cognitively impaired and they live at home with us. So it's like I have two giant 10-year-olds in my house. You know, we will never be empty nesters. So I still shop at Costco, I still, you know, cook in volume, they eat a lot. Um, the good thing is they are, you know, pretty independent. They can drive and they do their own laundry and they're capable of cooking, although they prefer meat to cook. Okay. But um, when we want to go overnight or go away for a few days, they're fine. And that means we have people to let out the dogs and care for the cats as well. So it's a huge benefit. Um, but the big worry on my mind is when we're gone, how will they manage? And what are my options? And they're in this gray area where they're not being in a group home situation would not be an appropriate fit, yet they could never live independently. Um, so I'm working through that and I lay awake at night worrying about that, and so I'm still trying to figure that out. Um, but my schedule now is very loose, and every day I do three things. They're deal breakers. I exercise, I either walk three or four miles, or as I said, go to the gym and lift those weights. Um tell how much I enjoy that, but I'm so proud of myself when I do it. I can't believe it. You know, I'm I'm here to bump you up, you know. But um, no, it's just like I have to stay healthy and I have to do that. Um, I take a nap every day, maybe 20 minutes. And my mom used to call that my safety valve. And she was so right because that is my superpower. I have the ability to take a nap, tell myself what time to wake up, like 20 minutes without an alarm. And almost always I will wake up and I often feel like it's the next day. I have gone into such a deep sleep. So that is a gift that I don't take for granted. Not everyone is able to do that, and it is a lifesaver for me. Um, and then the third thing is something important, and it's whatever I decide is important that day. So, yesterday, you know what was important? The closet in my bathroom that I was often afraid to open the door because you know, things could come out. And it was a big purge. And when I'm looking at things with the expiration dates, let's just say it's not in this century, okay? Whenever I do that, I'll just go walk back into the bathroom and open the door and admire it because it's a thing of beauty now. Yeah, it was on my mind, yeah, and it was something that I could do that was important because it needed to be done, and now it's done. It's like a gift to myself. So it might be making phone calls I'm putting off, or something really big like getting our taxes done or something, but every day I do something important, nobody else is telling me to do it, or apart from stuff like you know, making dinner to feed these people, or or other things that are part of a daily thing. So having a loose structure like that um is what works for me, and it's not a pressure structure, but you know, exercise, taking the nap, and doing something important, and not necessarily in any particular order. It's like what works based on the weather, based on on all kinds of things. So that's what I'm doing. I I feel I have to give myself permission to slow down.

Speaker 1 54:57

That's hard. It's really being a go-getter for so long, Breeda.

Speaker 55:02

Yeah, yeah, it is. To not feel like oh, like I don't want to put the television on until maybe four o'clock. There's a news show I like to watch, and I give myself permission to do that. But you know, you just find ways to take care of yourself and not feel bad about it and feel good about it and say, you know what, I'm doing this to take care of myself. And if you feel guilty about that, the way I couch it is I'm taking care of myself so I am better able to care for others. And honestly, I don't think you need that second part. I think you need to feel okay about taking care of yourself, but but it is hard for many people, particularly women, to not feel indulgent or guilty about um doing the things really that they really need to do. To take a break before you break.

Speaker 1 55:54

Fabulous ending. I love that. Are you welcoming people to still reach out to you?

Speaker 56:02

Absolutely. Absolutely. So my website, you know, is breeda miller.com. There's a lot of things on there. I do have a newsletter which is very irregular, so you will not be slammed with lots of email or anything like that. But when I have something that I think is um an interesting story or some news or some tidbits, um, I do send it out. Um, so if anyone would like, it's free and there's no worry about you know selling email addresses or any privacy issues, just you can do that. You can sign up at my website, which is easy. And there's lots of videos and stories there.

Speaker 1 56:36

So that's BreedaMiller.com.

unknown 56:39

Yes.

Speaker 1 56:40

Excellent. Well, thank you so much for letting this be your one purposeful thing today, I hope. It is.

Speaker 56:48

This is my big thing. I was so excited. Yeah, this is sitting here in my little she shed that my husband built for me, but it's just a cozy spot outside my house that is my space, and it's it's a wonderful thing.

Speaker 1 57:06

It's a beautiful place. Thank you.

Speaker 1 57:16

What Breeda shared today reminds us that the mind, body, and heart don't stop caregiving just because the role ends. And that letting go of our caregiving habits and emotions that held us for so long that takes time. She also showed how creating meaning through stories, her play, photos, or small daily practices such as intentional movement, including lifting weights, which she really didn't care for, taking a nap, and doing one thing of purpose. These she describes as real deal breakers. And she found them beneficial for her life after caregiving. I hope her insights and wisdom offer you something of great value for your own path. If you'd like to reach out to Breeda or to sign up for her newsletter, her website is Breedamiller.com. Thank you for tuning in today. And to Breeda, thank you for sharing your story and insights. If you enjoyed today's episode, share it with your friends, especially those navigating life after caregiving. And if you don't want to miss future episodes of the Island Treasures podcast, be sure to subscribe. See you next episode.