Join us for an intimate conversation about the hidden emotional toll of caregiving with Alison Carelli, LCSW, geriatric care manager and psychotherapist at Aging Network Services! Hosted by Nirvana Tari, Chief Patient Officer at CareYaya.
In this vulnerable episode, Alison reveals why even the best caregivers lose their patience and get frustrated (there's no such thing as perfect), shares the universal experience of guilt that follows every caregiver everywhere (and how to use it as a barometer rather than letting it consume you), and explains why comparison truly is the thief of joy in the caregiving journey. Discover the unique minefield spouse caregivers navigate when forty years of marriage dynamics shift overnight, why doing things behind the scenes rather than together can protect your spouse with dementia from hurt feelings (even though it feels deeply unnatural), and the profound complexity of anticipatory grief when you're mourning incremental losses while your loved one is still physically present.
From helping resistant parents who insist they don't need help (start with something concrete like iPhone frustration, then build trust) to navigating sibling disagreements when dementia progresses unevenly, Alison offers compassionate guidance rooted in a decade of experience. Learn why widening your circle of support is the most underrated and important self-care practice, how to recognize you're actually being a caregiver even from three thousand miles away managing things remotely, and the critical importance of checking in with healthcare providers about caregiver stress (on a scale of one to ten, how stressed are you?).
Key insights include why the gift of time is the best gift for any caregiver (whether spending time with the care recipient or the caregiver themselves), the power of intent when processing guilt after losing your temper (did you mean to cause harm?), why moves are always rocky for the first three to six months no matter what, how adult children with rocky parental relationships can still show up as caregivers by bringing in objective third parties who won't get triggered, and why you should focus on your strengths rather than weaknesses because caregiving is a long game, not a sprint.
Brought to you by CareYaya, America's number one rated solution for in-home senior care, providing industry-leading quality care at the most affordable rates. CareYaya is known especially for delivering the most reliable and affordable overnight senior care and 24/7 care in many major metro areas including Atlanta, Boston, San Francisco, and Washington D.C.
This episode is essential for spouse caregivers watching their forty year marriage transform in painful ways, sandwich generation adults juggling aging parents and young children while working full time, adult children with complicated family histories trying to figure out how to show up, siblings struggling to get on the same page about a parent's declining condition, or anyone who needs permission to give themselves grace because they're doing better than they think. Happy National Family Caregiver Month to all the carers who care.
Full Episode Transcript:
Hello and good morning, everybody. Thanks so much for being here on today's episode of The Care Plan. I am here with the one and only Ms. Allison Corelli, who is a geriatric care manager, psychotherapist, and social worker at Aging. Network Services. Thanks so much for being here today, Allison. How are you doing? Thank you so much for having me. I'm excited and honored to be here. I'm doing great. Thank you. Well, I've been looking forward to this episode all week, and I'm so excited to share with our audience all of the wonderful tidbits and insights that you're going to have to share. thank you i'm excited and before we get started i want to wish a very very happy national family caregivers month to all the caregivers in our audience you guys are doing amazing work and if someone hasn't told you today keep up the good work you're wonderful amazing and everyone appreciates you so much um but you guys know the drill we're gonna go ahead and get started with our lightning round so allison tell me what do you think is the best gift to give a family caregiver All-encompassing, I think it would be the gift of time. And that could either be time that you're giving to the person, spending with the person who needs the care, or time that you are spending with the caregiver. That's such a good answer. I love that. Next one is, tell me your best advice for someone who suspects their parent needs help but doesn't really know where to start. Yeah, it can be impossible to know where to start. So what I would say is to look up a reputable aging life care management firm in your area, pick one and give them a call. Most offer a like complimentary getting acquainted session and that gives you an opportunity to sort of spill out. This is our situation and this is what I'm seeing and this is what we're going through. And get some sort of immediate tips and some reassurance probably around the things that you are doing well and the things that you could be looking out for in the future. And then also, you know, of course, learning about sort of how care management could be helpful to you either in the here and now, like doing some kind of a consultation or down the road. in the future. Absolutely. You're never alone. And you should never feel that way. The next one for you is, what's the one thing you wish health care providers better understood about family caregivers? I would say I wish that they understood that on the whole, family caregivers are really doing and trying their best already. They're showing up. They're in there at that appointment with the patient. And so I would say that providers, anything that they can try to do to offload from the caregiver rather than pile on. And of course, that can look different in different situations. And then the other thing I would say quickly, too, is just to be sure to check in with the providers, please check in with the caregiver, too. A lot of providers do a very beautiful job with that. Some don't. And even just, you know, taking a moment to ask, you know, like on a scale of one to ten, how stressed are you? Because then that speaks a lot and it speaks to the care of the provider's patient. Yeah, it opens the door of like, I'm here. Let's talk if you want to have this conversation. I like this one. What's the most underrated self-care practice for caregivers? Yeah, self care can feel like a loaded term, I think, for caregivers because they feel like they're hearing that from everybody and they feel like they don't have time or they don't have the energy to take care of themselves. But I would say the most underrated and the most important self care practice is widening their circle of support. So figuring out ways to get extra support different kinds of support who to go to for what sorts of support and you know like you've been saying you know that you're not alone and finding that you're not alone and who are your people um is really really important and it's the way that caregivers are able to survive this honestly a hundred percent i love that such good tidbits we'll fit more and i'm going to ask you to fill in the blank here so being a caregiver means you're a would say that you're a carer that you care and so you know being a caregiver it can look many different ways it could be an adult son in San Francisco with a mom in Washington DC you know he's not he's maybe only sees her a couple of times a year but he cares and he's managing what he can from afar And then, you know, it can also be the spouse that's in there day in and day out. It doesn't need, being a caregiver doesn't need to mean that you're doing any kinds of hands-on care, though it certainly can. But it's an umbrella term and many more people, you know, actually likely are caregivers that don't personally identify as such. that's actually i love that an umbrella term is such a good way of putting it because at the end of the day if i have my numbers right i think there's fifty three million caregivers in the united states right now that's about one in six americans that are caregivers so a lot more people than we think um which is why again it's so important to not feel alone um and your caregiving journey All right. Well, thank you for an invigorating lightning round. I'm excited to dive in headfirst with these questions. So Allison, you have a set of twins at home, which is so awesome. And you spend your day supporting families through some of the hardest chapters in their life. What kind of drew you to this work and how do you show up fully present for both your patients and your kiddos? Yeah, sure. It feels like a big question. So what drew me to this work? I mean, I was very drawn to the field of social work. Social work is such a versatile field. There are so many things that one can do with a social work degree. We need more of us, so I'm putting that call out there too, we especially. need more of us um in aging um so anyway i went to social work school i've always felt like i had a knack and i've enjoyed working with older adults you'll hear you know people like me talk about having had close relationship relationships with grandparents and that sort of thing which was the case for me um so i was just really drawn to working with aging and when you work with older adults you're of course working with their families too um And so I, you know, I started my social work career in a skilled nursing facility as the director of social work, where I loved working with the residents and their families, but it was a very grueling job with a lot of burnout. So, you know, I made the shift to being a care manager where I now have the gift of time with my clients. I'm able to form these deeper, more nuanced relationships where I'm able to do more things with my clients and be supportive to families in all different kinds of ways. And the variety is awesome. Like no two days as a care manager is the same. um you know you might it's it's fun oh i really i really love that and you know um i think that that's what i think is like the coolest part about healthcare providers like yourself who um are given exactly like you said the gift of time building those relationships with their with their uh patients and families because a lot of the times unfortunately our healthcare system is built in a way that some providers don't have that they don't to be able to do that as much as they would maybe even want to or feel the need to. There's guidelines and restrictions and insurance and this and that and the next in place that's like you have Fifteen minutes with this person. You have fifteen minutes with this person. You actually have ten minutes with this person because you lost five minutes with the last person. So it's like that's such a beautiful thing to have, to be able to know that you can be there for your people to the greatest extent of your abilities. But yeah, so you've been doing this work for about a decade now, which is really, really awesome. Congratulations. Thank you. And let me know what a myth is about caregiving that you wish you could bust wide open right now. I think it would be that even the best caregivers get frustrated and lose their patience. There's no such thing as the perfect caregiver. That, again, even the ones that are doing the best job are not perfect. They do sort of lose it sometimes and get upset or angry. And it's just it's so hard. It's it can be relentless being a caregiver. But what matters is sort of, you know, figuring out how to cope and how to repair and how to make it so, you know, that. You sort of give yourself grace and are maybe a little less reactive next time. But, you know, I think it's about managing expectations, too, because I do think that, you know, people probably think that everybody else is doing a better job or a different kind of job than they are when really it's a struggle. I mean, comparison is the thief of joy, even when it comes to caregiving. Absolutely. Absolutely. A hundred percent. And that's such a good point because we're human at the end of the day. So we should give ourselves the grace to feel human emotions and, you know, get angry every once in a while or feel sad or overwhelmed because at the end of the day, what can you do? Right. Right. Yeah. Well, I kind of want to switch gears a little bit and talk about something that I feel like doesn't really get enough airtime. And that is spouse caregivers. So you know, when your husband or wife becomes your patient, what are the unique emotional landmines that couples are kind of stepping on and how do you help them navigate that shift? Yeah, so it's very interesting because the dynamic changes a lot and the dynamic can change quickly. Yet there are also all of those historic pieces of the marriage that come along with the new or the shifting dynamic. So there are, you know, there's all of the history. And then there are these new roles that may feel very foreign. So like, for example, let's say, you know, it's a husband and wife. And throughout the marriage, the husband has been sort of pretty directive, pretty autonomous, has maybe handled the finances or what have you. When the couple has gone out on road trips or out to dinner or whatever, it's always been the husband who does the driving. That's just been how it's been throughout their marriage. And now the husband has dementia and is feeling like his wife is controlling him all the time, is always telling him what to do. And that feels very unnatural for each of them and both of them, because that has not been the dynamic throughout their marriage and their life together. And I would say, too, like even outside of the specific example, when when dementia is in the picture here, the person feeling a loss of control and not knowing what to do with that. And so feeling sort of controlled by others and typically primarily the person they feel they're being controlled by is whoever is right there in the home with them, which is a lot of times a spouse. And that can just be very, very difficult to navigate because in most circumstances, you know, the well spouse is very, very well-meaning and wants the best for everybody and wants things to feel more comfortable. But it's just, it's very difficult and it requires a lot of sort of shifting because, you know, the challenge with dementia too, is you're not able to change that person's thinking, you know, their, their brain has a disease that is going to, you know, that it's going to continue to deteriorate. So it's like all we can control is what we can control ourselves and controlling our reactivity, um, and the way that we try to relate to our spouse. But it's a major, major change. I can only imagine. And, you know, like we built these neural networks in our minds of like habits. And if you form the same habit of being with someone for forty, fifty, sixty years and then all of a sudden everything is completely different. Like I can only assume how overwhelming that must feel for both parties. But, yeah, I'm glad that there's people like you out there to kind of help navigate these shifts and changes because Oh, that sounds sounds like not the most fun time. But yeah, so, you know, you've kind of like mentioned recognizing patterns in relationships and, you know, ways that they are morphing. Can you paint us a picture of that? So maybe more specifically, what does that look like when a four year marriage starts to transform because of like dementia or chronic illness or just like brain change that's causing that person to not be the same person that they were when you married them. Sure. Yeah. So I guess in the same sort of example that we talked about earlier with the husband having a dimension and the wife being the well spouse, likely like driving is going to come, that is going to come up. And let's say, you know, the husband is no longer permitted to drive. The neurologist has said, like, you cannot be driving anymore. But then this is like an enormous point of contention in the home because the husband can't understand why he's not able to drive anymore. And they have this long history and he's feeling controlled by her and saying, you know, like I'm a better driver than you. And I've always done the driving and why are you bossing me around and all of that. Um, And it can be very, very difficult for the wife to not engage with that because like throughout their marriage, typically they've been able to probably, hopefully, you know, like compromise or like work through, you know, their, their issues and, and, you know, figure it, figure it out together. But in an instance like this, when you're talking to somebody who's not able to think rationally anymore is not able to relate in the same ways. It's very hard. And so it's a whole new ballgame. It's a whole new way of like learning to communicate and relate. you know, to rather than getting delving into the issue, whatever the issue is. And then this like driving is a huge one, you know, figuring out ways to sort of work around it or, you know, meet the person with empathy and say, you know, I know this sucks, but we have this piece of paper from the neural, you know, like the doctor really has said and putting it back on somebody else is always important. And then, you know, really just figuring out sort of how to work through it in a way that, you know, hopefully results in fewer hurt feelings rather than more, I guess, because if a situation escalates and it gets into a bigger back and forth, then it's just gonna continue to do that rather than sort of trying to meet it with empathy, attempt some distraction, which works sometimes and other times it doesn't, or to, you know, sort of separate a bit too, you know, like go to another area of the house. And because, you know, that's not that reels like this, like driving, if that's something that somebody has their mind on, it's probably going to keep rising up for a while. But, you know, it will dissipate in the moment. So to just, you know, try to try to get away from that topic, too. And then there's also this dynamic, a huge dynamic that changes is for a well spouse to try to do more things like sort of behind the scenes rather than together. And that can feel really super unnatural, but it's actually a way of protecting their unwell spouse from the hurt feeling. So with this driving thing, um getting the car you know like getting the car out of there figuring out some way that the car is no longer sitting in the driveway without having some big conversation about it which ordinarily you know like in a marriage you you would come together and say what are we going to do with this car but you have to morph into this realm um of doing more stuff behind the scenes, which can feel really quite unnatural, particularly for a spouse, way more so for a spouse than for an adult child. One hundred percent. And I really like the point that you made about kind of putting it on someone else and like shifting the blame, because a lot of the times like we have sort of seen that through our caregivers, like the student caregivers at Carey, where they'll like let us like the family members will like messages and be like, you know, your student was like, I'll take the fall for that. Let them be that and you get back to your relationship and you try and maintain that husband and wife relationship for as long as you can. Because once that dynamic fully shifts, it's hard to completely get back to it. So at the end of the day, what we can do as these support systems and as caregivers is to allow folks to maintain the sanctity of their marriage for like as long as possible. And I think that that's, that is a really, really beautiful thing. And feelings that I feel like caregivers are dealing with is guilt, you know, the shadow that follows them everywhere. And for spouse caregivers specifically, what do you like, what, What do you think they're feeling guilty about? Or what have you seen that they're feeling guilty about? And how do you help them work through that? Is there like a framework that you provide them? Or yeah, walk me through that. Yeah, totally. I would agree and say that guilt is universal for caregivers. I think every caregiver feels guilty, some more often than not. And it can show up in different ways, like you said. So one way that it often will show up is sort of after one of these moments where the caregiver has maybe lost their patience or has gotten into one of these sort of tit for tat arguments and then like in the aftermath felt guilty you know felt guilty for raising their voice or felt guilty you know for contributing to some hurt feelings or something like that. And so, you know, in therapy, we would certainly talk through that. guilt not that anybody likes to feel guilty for sure but it can serve as a barometer for us too so that like if you are feeling that way um what does it mean or like what did i do or not do um to contribute to this feeling um so that maybe in the future i would react a little bit differently um one of the things and this is just like universal not just with caregivers but when i'm working in therapy with um folks around the issue of guilt we get into talking about intent right like so did you intend to cause harm or did you intend um for this to end poorly and always like the answer is no like it wasn't my intent i didn't do this purposefully most of the time, shame accompanies guilt too. Um, and to be able to, to work through that and to help, you know, to sort of, as a therapist, to shore up the person and help them, you know, recognize like I didn't do this on purpose. I need to give myself grace. I can try to do better next time. Here's how I can set myself up to try to do better next time or to try to, um, get ahead of it so like when you feel those um feelings of anger starting to rise up in you or feelings of whatever to to shift to something else before it explodes um yeah to bring it back to the because the other thing too is that like the the guilt or like it it ends up circling back to empathy which is where sort of you know everybody lives most comfortably in this and where we want to be. So, yeah. And then the other thing, you know, there's also for caregivers, they can have guilt around that or they can have guilt around sort of the other areas of their lives. So let's say maybe they are grandparents and they you know my a client might be feeling guilty that um she's not able to be the grandparent that she had wanted to be right that she's not able to show up sort of in the ways uh that she wanted to for her grandchildren or not um participate in their life in the same way that she had intended and that's a lot to work through too um and then also it all been ties back to to like this widening the circle of support right like what what could maybe be possible so that you could show up maybe not in this like idealistic way that was probably never going to come to pass anyway um but in a way that more closely matches like sort of what you want that relationship absolutely you know when you're when you're saying these, I'm kind of like, have you seen the movie inside out? Oh yeah. I'm kind of like imagining like at play in the control center. And I'm like, Oh, this makes a lot of sense. You just gotta like to kind of talk to each emotion like separately and be like, all right, guilt, like let's have a conversation. Like what's going on? Like, why am I feeling this way? And just kind of, you know, having those tools in your toolbox to be able to just like pinpoint exactly where that emotion is coming from gets the real And then backwards from there. That's really good. And I really had not thought about the guilt that comes from maintaining the other relationships in your life. Balls that you feel like you're dropping. Yeah, because you can feel so sort of boxed in. And it's very isolating. Yeah. And we and we talk about this all the time as well. But Yeah. I'm thinking about so many things now. I'm like, wow, you got to take more than that into consideration. Again, at the end of the day, caregivers are the most multifaceted people ever. And I can't say happy national family. So again, I'm saying it. But this is a little bit of more of a heavier topic. But I do think it's important to definitely talk about. And, you know, the topic is anticipatory grief. So how do you hold space for someone who's grieving their spouse while that person is physically still there with them? Yeah, it's a really good question. And anticipatory grief is something that's universal in this journey too. But it's uncomfortable. You know, it's the sort of thing that it can feel uncomfortable to feel. and even more uncomfortable to start talking about. So, you know, the beauty of therapy is that that rapport builds and you build a trusting relationship with your therapist where you get to the point where you feel able to come out and talk about some of these feelings that feel a little bit more uncomfortable. But anticipatory grief, I mean, when you're in a caregiver role, it's certainly about anticipating the death of your loved one. um but it's which is a huge thing and we we talk about that a lot in therapy you know people wonder what their identity will look like or what you know their life might look like once their loved one is is no longer here um but then there's also you know the anticipation of all of the other more incremental losses. You know, for instance, with dementia, you know, when are we going to slide into the next phase here? And dementia is so uneven too, you know, so somebody may have a good day and then a bad day and you sort of, you never know what to expect. And you also, you know, don't really, a lot of times you don't really realize what you're losing until you've lost it too. And so like not recognizing that in such and such is going to be the last time that this was going to happen because like suddenly it's gone, like that ability is gone. Um, and so it's like both the anticipatory grief and it's complicated grief too. Um, You're going to make me cry. Yeah, it's very sad. It's very, very sad. It's truly heartbreaking because, but I also feel like to an extent, like it's a defense mechanism, right? Of like kind of preparing yourself and, you know, it might not be the most helpful thing in the meantime, but you think that it helps to some extent in the eventual grieving process, like once the person is no longer physically there. Do you think that having had that allows you to prepare for that next phase a little bit more? Yeah. In ways. Yes, absolutely. I mean, another thing that's like universal about grief or like the experience of grief is that like everybody will say it comes in waves. Right. It's like you don't know when you're going to you're going to you might just be like driving down the road, listening to a song or not even listening, you know, but like something hits you. And so caregivers are having those moments of like it hitting them in in anticipate, you know, in this phase when their spouse is still living. which then, you know, it's gonna continue in different ways after their spouse is no longer living. But yeah, they get used to what it feels like to experience grief and grief never goes away either. The other thing too, is a lot of times, you know, when I'm working with caregivers, They already know what it's like to experience grief because they've grieved other losses in their life too, right? Like they might have lost their parents already, but they've likely experienced other major losses. They might have retired, which is a major loss in a different way. And, you know, the losses just layer on top of each other, too. And as you're experiencing loss over one thing, it can bring back feelings around another. So it's just it's very complex and it never ends, really. But just being able to have the opportunity to process and work through the feelings is enormously helpful. I love that. have to snip it out grief never really goes away huh that's so it's and it definitely the waves come and go for sure but um and they might get smaller over time but like I feel like the ripples uh would definitely definitely still be there um thank you for sharing that I know that's heavy to talk about but I do think it's really really important um but I do want to switch gears a little bit yeah and to kind of talk about um more adult children caregivers so you know um You work with what's often called a resistant parent, maybe. And we've heard the stories of mom is refusing the help, and dad won't let anyone into the house, or they kick the caregiver out. So how do you build that trust with someone who doesn't think that they need you and need your help? And how do you navigate those dynamic changes of your parent took care of you your entire life, and now you're taking care of them, and they that's like a little off-putting for them. Yeah, totally. So as care managers, this sort of like working through that resistance is our specialty. So starting at like with working with adult children, we'd want to start out by getting like a real history of their parents and finding out sort of like who they've been throughout their life and what has been important to them and that sort of thing. And then also trying to find out through the adult child, like what what areas, if any, could their parents be open to receiving a little bit of help? Or like, what would the parents say they are struggling with? And like a simple concrete example of that might be like, oh, dad is like complaining about his new iPhone all the time. And like, he's he He can't figure it out. He's always frustrated. He's blaming it on the phone. You know, like we can't get ahold of him and he says it's the phone, whatever. And so, you know, we sort of strategize and figure out a way to introduce the care manager in a way that like dad might be open to, which in this case would be like, here's Allison who, you know, can help you figure out your iPhone or figure out if like this is even the right phone for you and all of that. So if I'm able to sort of sneak in that way and be working with him on exactly that, but also, you know, have my invisible social worker hat on and be doing like an assessment that he's not perceiving as an assessment of him sort of through that process of building a relationship. Right. You know, I'm able to take this like two pronged approach of talking to the kids behind the scenes of like, this is what I'm seeing. This is what I'm observing. This is what I think we could try. This is what I think your dad is actually doing very well. And I don't think you actually have to have as much worry as you are. Like, let me reassure you. I've seen, you know, all kinds of situations and I actually think this is OK. And then also doing that with the kids and then keeping myself in the door there with dad. So that if he trusts me and likes me and we get to a place where we're able to talk in like a really relational manner, that I am then able to introduce, you know, that new level of support. Like I, Alison, can't be here as much as, you know, you might like me to be. But here's, you know, a colleague or a friend of mine or what have you. And that would be like a professional caregiver that would be coming in. four times a week or something like that, but to sort of scoot that person in and then, you know, be able to say, you know, you let me know, like, let's talk about how it's going and like, whether you like her or not. And, you know, like I'm your person now. And so that way of sort of getting in, getting in and staying in. I love that framing of it. That's really, it's really does. It's just all about the mindset shift, you know, and walking with that person and just kind of understanding that, end of the day they're going through a dang hard time and it's you know you're just trying to make it a little bit easier on them so if you have it has to be just a little bit harder on you and in the front end to kind of make it work um it'll in the long run it'll all end up yeah right but um sandwich generation that is very very real i feel like for a lot of They're working full time, they're raising kids and they're managing the care for their aging parents. So how do you help them make the impossible decision between, you know, bringing in care versus moving a parent or, you know, all the other options that could potentially be out there? Yeah, my heart major, I mean, my heart goes out to all folks that I work with. It majorly goes out to the Sandwich Generation. I'm in it. I'm raising young kids. I'm working full time. I have aging parents. So it's very challenging when you think about time management for the person that's in the sandwich generation. Where are you putting your energy and how to show up in all of these places in the capacity that you feel that you want and need to. But to your more concrete question about figuring out how to make the decision about moving or staying home, Typically, again, that starts with trying to getting a real history of the parents and like who they are as a person and what their values are. And then helping to paint a picture for the kids about what it could look like to bring in some help at home, what it could look like to move. And then often just like trying some stuff and doing it incrementally. Right. Like, let's try a little bit of home care and let's see how that goes. And then like that becomes a data point. If they're able to connect well to somebody that's coming into their home, then that bodes well for like down the road. Should they need and can they afford twenty four hour care? Then like it might it might work for them to stay at home. And then there are other folks where you try that and it doesn't go well because they the the parent feels stifled by having somebody like so in their space, even if it's just for like short shifts. But that might be a data point that like this is the sort of person that might actually do better in a senior living community or in like assisted living where the person, the caregiver is not in there in your apartment all the time. They just sort of pop in and pop out as you need your medicine or as you need activities of daily living tended to or what have you. So it's just a matter of ongoing assessment, real thoughtful planning, recognizing that anything that you try doesn't have to be a be all end all. Now, of course, a move like you know you want to be really really thoughtful about because you want that to stick um but if somebody even you know like we helped to paint a picture too about like a move is going to be rocky no matter what like moves are always rocky even for folks that aren't older and like then you know how to get through that transition period too of like the first three to six months yeah absolutely yeah i obviously this is nowhere near the same level but i'm apartment right now and it's like it's just exhausting first of all like figuring out all of that and then actually doing the move and then transitioning into a new space so I can only imagine what that feels like when you're going through like even like brain change, um, as well. And yeah, I guess it's so stressful. Absolutely. Just, just being supportive and like being there and hearing someone out, I feel like, um, is the most important, like, yeah, you're right. This is tough. Um, it might be tough for like a few, few weeks, but we're in this together and we're gonna, we're gonna make things right for you. We're making the only the best decisions for you. Oh my gosh. I've kind of let the time get away from us. Um, I'm going to ask you one more question and then dive in. I know we have some eager audience questions waiting for us as well. And then I'll do my final wrap up question at the end. So, you know, this, It's kind of like a heavier question, too. But there's in our previous conversations, you know, prepping for this podcast and things like that. You kind of mentioned this emotional piece of some adult children aren't really emotionally available for caregiving because of a rocky history with their parents. So how do you navigate that minefield and do so without judgment, you know? Yeah, I'm so glad that you're asking this because I feel like this is the sort of thing that like doesn't get talked about openly that much or doesn't really get enough airtime. So thank you. And I would say that like this, this the without judgment piece like that, that is just part of our profession as social workers. We're able to we learn and we're able to see the big picture and to sort of hear a person's experience and recognize that it's multifaceted and has many layers and, you know, recognizing that we can really never truly know what the person, you know, what they experienced as a child and sort of how fraught that relationship may have been and, you know, the impact that that's had on them. through their adulthood. So we do a lot of work with adult children who have had difficult relationships with their parents, have had parents who've been difficult, the parent has been difficult all their lives, and probably due to maybe some trauma that the parent experienced early in their childhood that led to their having a difficulty throughout their lives. And we're able to come out that, like you said, in a very nonjudgmental way to help the adult child with figuring out sort of how they want to show up and how they want to be involved and how they want to communicate with their parents. A lot of times, you know, like as care managers, that's a it's a great opportunity. opportunity to bring in like an objective third party who can do like the boots on the ground work with your mom and can tolerate you know her and and and be the one that she that mom dumps on or vents to or what have you and not be triggered right like I can sit with somebody else's mom who's a difficult person and it doesn't bring up all these feelings in me because I don't have this history with her whereas if that were her daughter I she's going to get triggered and upset and leave feeling very sad and upset. So being able to do that and then being able to sort of help the adult child see that they are being a caregiver and they are doing the best that they can and they are caring for their mom by virtue of like bringing in this, this third party. Right. That's so interesting. And like, definitely, definitely something to like think about and kind of, chew on. Totally. Well, I have a coworker that has this really interesting philosophy about just life in general. He's a very, very passive person. And he always says, anytime you get upset at someone or mad at someone, just remember that their actions are probably a result of childhood trauma that was a result of their parents. But you can't get mad at their parents either, because their actions are probably a result of childhood trauma. yeah we went through and you can't get mad at their friends and it's just like a repeated cycle of like you can't see now because at the end of the day we all have things that we're going through that is uh you know important to kind of put into perspective when you're looking at someone it's like just imagine them as a five-year-old like are you still gonna be mad at them probably um i'm not saying that should be the case for everything but a lot of times that like just that kind of framing for me yeah it can be free you know it's like a it's like a way of letting go that perspective shift yeah it can be actually very freeing yeah absolutely it's all true yeah absolutely absolutely um i'm gonna jump into some of our audience questions now So our first one is, oh, this is interesting. So we have a question that is, what are the earliest, most often overlooked signs that communication is breaking down in dementia? And how can families respond before it kind of turns into a crisis? oh that's a really good question um and it's hard to answer because like dementia is an umbrella term for sure and there are many you know sort of different kinds of dementias and uh the outset of any dementia each one can look a little different from the next i don't even mean each type of dementia but like each person it can look a little different so my very like broad statement here would just to be be on the lookout for like literally any change like anything that feels off to you anything that feels weird you know you know your your parent you've known them all your life and if something you know don't just think like oh they're getting you try not to just think like oh they're getting old and like this happens to all old people right it it may not you know and so like some examples of you know if they're if they're repeating themselves in conversations if you feel like you had a conversation and ended on the same page but then like the next day it gets brought back up as though that conversation the day before never happened like that is a sign um you know and it can be it's not always language, you know, sometimes it's time and space, you know, like if your mom seems to be like a little off kilter or, you know, sort of misses a curb a little bit when, like, sometimes it's, it's in these like physical ways that you can sort of notice dementia or, you know, a cognitive issue sooner rather than later. And I would just say, yeah, that as early on as possible, like if you want to be involved in this way, to try to start a conversation with your parent or parents around like their care, who's their care team and what medications are they taking and you know, take their temperature on how they might feel about, you know, in the future or, you know, and it could be in your future, you know, like going to a doctor's appointment or two with them, because that's where you have the opportunity to be able to, you know, because sometimes you might even want to say it like behind the scenes to the doctor to save face for your mom. Like, hey, I'm noticing this, this and this. Could you, you know, run whatever tests you want to based on what I'm telling you? Yeah, a hundred percent. That's, it's really, I love that. It's really, really great and insightful. We have a few more, but I knew this one was going to run long because of these questions are so juicy. So how do you recommend families handle situations where siblings disagree on how much support a parent needs? when the dementia is kind of progressing unevenly, like we were talking about comes and goes, I feel like, ah, that's so good. How did I not bring up siblings the whole time? Thank you for asking that question. Yeah. No, and it's a big question. And it's, of course, a situation that we work with a lot. And it's very common, you know, because no... it would be rare for like two people to have the same perspective, you know? And so, and I've worked with families where there are a lot of kids, you know, and everybody is well-meaning, but folks just aren't on the same page because they have different ways of looking at what's going on. They also have different relations, you know, each relationship with their parent is a little bit different too. So if I have the opportunity to work with them, I start out by like hearing a little bit from each sibling. Like, what is your take here? What do you think are like the, I don't know, the highest risk areas or what are you most concerned about? And then trying to wade through all of that. And it's helpful for me if like the next step can be me going and like meeting the parent and doing a little bit of an assessment myself so that I can even then bring in more objectivity based on my own observations. And I'll say too, like there's a lot of, with families, a lot of coaching and psychoeducation, I guess, that I do around dementia. So like, A daughter might be saying like, oh, you know, I'm seeing this in mom, but like, oh, she's always been like a little bit that way. And it's probably just like fine and like who she is or what have you. But being able to recognize that it likely is a sign of something more and being able to be that. sort of objective voice and then helping the siblings with communication strategies amongst each other too. How can we divide roles? How can we work as a group here? And even like I have facilitated almost like, you know, business meetings with siblings so that like, you know, you come together and like, who feels like they're doing too much or like, I, you know, I feel like you're not doing enough and like, what can we do about this? And then, you know, a lot of times I'm eventually then able to back out and they can, uh, move forward doing that themselves. Yeah. That's great. Yeah. Just kind of like, it's again, all about giving that toolbox to people and allowing them to, um, kind of like know how to effectively communicate. Because again, there is no one way to do this properly. Like there is no one care plan that's going to work for everybody. Absolutely. For the sake of time, I'm going to pick one more question from the audience. And this one is, as a child of a parent currently in the sandwich generation, what can I do to help both my parents and their parents that they're caring for? Oh, that's a really good question. Yeah, that's a really, really good question. So I would say communication, you know, I don't know how open the door might be to communicating with the parent, you know, but trying to, I don't know if it's coming up as a topic of conversation, but to try to bring it up and try to um you know say i i want to be here for you and i want to show up you know like however i can because there's also the dynamic of like um you know parents parents in general don't want to burden their children they don't want to be a burden um and so they sort of keep to themselves and and want to try to you know figure it out as best that they can and don't know that their kids might be open to being supportive and helpful because they don't want to burden them with the information but then the kids also aren't letting them know that like the door is open so just trying to open the door a little bit and then to keep checking in too so I don't know you know like I'm the type of person I gotta like set a reminder on my phone for everything if it's gonna happen but like you know set yourself like a little reminder like check in Because otherwise it's really, even if it's the sort of thing that you're thinking about a lot, it's really hard to let like the action part fall off your radar and to just proactively check in and they'll let you know sort of, or you'll be able to pick up on what you might be able to do that's supportive. And even just that act of checking in is a lot of support. And I'm especially thinking like, you know, especially if probably I assume there's like younger siblings that are involved. the situation as well so even checking in with your like younger siblings probably is helpful too of like like hey like mom and dad or or maybe maybe framing it for them in a way that's more easily understandable of like hey like this is happening right now like this is what mom and dad are going through like we need to work together to kind of um support them and see like what we can do in these situations as well but yeah I really really love that answer and to To sort of wrap everything up and put a pretty little bow on it, is there a particular takeaway, tidbit, insight that you, you know, if nothing else they listened to during this podcast, what do you want our, you know, sandwich generation caregiver, our spouse caregiver to sort of walk away from this podcast with? Yeah, I think it's, I really think it's majorly like to give yourself grace and like to recognize the things that you are doing and like to focus on your strengths rather than your weaknesses and recognize the ways that you are showing up and to really keep your focus there as much as you can. Caregiving is a long, you know, it's a long game. It's a long road. And so just trying to, ease the, the small things that come up sort of as much as you can and sort of see that, you know, one little, one little blip isn't going to throw the whole thing off course. Absolutely. Absolutely. That's such a good point. Like there is give yourself grace, give yourself to human. You're meant you're created to make mistakes. Um, so, and that we learn from them, right? Like we all learn from, yeah, exactly. And then there are forms that we'll do next. Well, Alison, I've had the greatest start to, I guess, halfway start to my day. This has been such a lovely and insightful conversation. I for one, certainly appreciate all of your insights and I'm sure everyone listening at home feels the same way. You know, as always, thank you for taking the time and thank you most importantly for the work that you do each and every day. Thank you very much. Yeah, it was a pleasure. Oh, I'm really glad to hear it. Well, Everyone at home, thanks for tuning in. I hope you have a lovely rest of your day and a great start to the weekend and happy almost Thanksgiving. I'm grateful for every single family caregiver that there is out there. Me too. Take care. Bye.