Episode Transcript
[00:00:02] Speaker A: I am very excited to talk to my colleague and close friend of many years, Emma Rhodes. Emma is a neuropsychologist, which means she is a clinical psychologist with specialized training in the assessment of cognitive and emotional functioning in older adults.
And her research focuses on better understanding the neuropsychiatric or behavioral symptoms of dementia.
Emma also has a personal connection to one of the diseases she studies and sees often in clinic. After several years of watching and waiting, her dad was diagnosed with dementia due to Alzheimer's disease in 2025. And Emma has had to make the transition from clinician scientist to long distance caregiver, traveling regularly from her home in the Pennsylvania suburbs to her parents house in South Carolina to help care for her dad.
Welcome, Emma.
[00:00:53] Speaker B: Thank you, Allison.
[00:00:54] Speaker A: Thank you for joining us today.
[00:00:55] Speaker B: Thanks for having me.
[00:00:57] Speaker A: I want to start by hearing a little bit more about your dad because I'd like for listeners to get a sense of him and who he is as a person before we start a transition into talking about his cognitive impairment and the impact it's had on you and your family.
So help us get to know your dad a little bit.
[00:01:14] Speaker B: Sure. You know, I feel like even this is kind of a hard question because I want to tell you about him without having to tell you about who he used to be and thinking about the difference between who he is now and who he was.
But there are things that I'll share about him that I think are true now and have always been true of him. And one of them is that he's a very curious person. And so he worked as an English professor for, for a long, long time. And he told me that he got into academia because at the senior year of college he was an English major and he found out that if you applied to a PhD program, they would pay you to read books. And so he was like, well, that sounds great. Better than any other job I could get with this degree. And so he went right to grad school. And he was somebody who, if he didn't understand something, just always wanted to know more and was very curious about other people.
Still is.
And he, you know, just wants to know more about what's in front of him and often more interested in other people than in himself.
He's also super hard working and always has been. I think he was a real role model in terms of, you know, me learning what it meant to apply yourself in a measured and dedicated way to something that you cared about.
He was, I have memories of him taking us out to hit tennis balls after school. And if you wanted your serve to get better. You took a bucket of balls with you every night and you hit serve after serve after serve, hundreds of them.
And he was out there doing those things, too.
I saw him grading papers on the weekends and very dedicated to his career, but just always willing to put in the work. And somebody who, you know, didn't like being idle still doesn't.
[00:03:13] Speaker A: I think the apple does not fall far, such as the life of an academic.
[00:03:18] Speaker B: Right, right. Yes. And having two parents in academia, not surprising that I landed here.
I will say one thing that he's always had that I really envy is patience. He's got to be almost a saint in terms of how much patience he has, especially as a parent. Just so generous with his time and so willing to sit with things that are uncomfortable or difficult. So, especially in parenting, I think that that's probably one of the best qualities that he showed me and still has to this day.
And then other than that, he's just an incredibly good natured person.
So always one to look at the bright side of things.
Not a negative or judgmental bone in his body. Just like a good dude.
[00:04:09] Speaker A: Sweet guy.
[00:04:10] Speaker B: Yeah.
[00:04:10] Speaker A: And I will say for the listeners at home, he has an amazing mustache.
[00:04:15] Speaker B: He does. He does. He's had that mustache for as long as I've known him. In fact, we only have two photos in the house of him without a mustache, and one is from his childhood.
[00:04:26] Speaker A: Okay.
So moving into our conversation about him and your role in it, this is a really personal story. It's intensely personal, and I think people might be surprised to hear that it was actually you who approached me about having this conversation, not the other way around.
What motivated you to do that? What made you want to share?
[00:04:50] Speaker B: Well, you know, I think it's probably not surprising as a psychologist that I like to talk about things.
And I probably wouldn't be in this career or chosen this path if I didn't think it was helpful to talk about difficult things. And certainly at times in my life where I've really been struggling with something that is always my impulse is to talk about it. I think that there is something to me about sort of suffering is a universal experience.
And when we bring our suffering to others and let them see it, I don't know, there's a sense of communion and, I don't know, connection that is really helpful to me.
And so I think more often than not, it's better to talk about it than to keep it in.
I also felt like over the past few years, I had a growing sense that there must be other people in this situation, too, and kind of was curious about that experience and what other people have done or confronted, how they've been living this life or experiencing this, like, dual role situation.
But when I went to look for examples of this, I really couldn't find many. And there were a lot of examples of people who were inspired to work in a given field or specialty because they had a personal experience with it. But I couldn't see a lot of stories of people who were not prepared to have it affect them personally and also be the thing that they spend their days at work, you know, embedded in. You know, I think it feels taboo to show our personal selves at work to some degree or another. And certainly when you work in a helping profession, there's a fear of, like, making this work, of caring for others about yourself, which is never the goal. Right. First and foremost, at work, I'm here for my patients. I'm here for their families. I'm here for my colleagues in the research space, and those are the people I want to do good work for.
But at the same time, to not acknowledge it, to feel, in some sense like you're hiding, almost feels like you're contributing to a stigma. Like, this is something to be ashamed of.
And, you know, that wanting other people to see it or recognize the pain that it causes is wrong somehow, which I don't think it is.
And so I think I'm trying to get more comfortable now with speaking more openly about what's happening with my dad, you know, both in private personal spaces, but also in professional spaces where I know other people are going through this too, or will go through this or have at some point.
And I think if it helps anyone out there to see people talking about it openly, that's all I'm really after.
[00:08:00] Speaker A: So what has surprised you about the experience of being a caregiver for someone with dementia or even just being the daughter of someone with dementia that you would not have known from a purely academic perspective or just from even your clinical practice?
[00:08:18] Speaker B: Yeah, I mean, I think a lot.
It's hard, though, because when. When you have, you know, years of hearing people's stories in clinic, hearing case presentations, you start to feel like you've got a good sense of what happens when someone develops dementia. But what we hear from our patients, what we get is such a small snapshot of their lives, and it is the most, like, medically relevant information, you know, for decision making and treatment planning and all of these things. It is not necessarily the, like, color commentary on their daily lives and the real experience of it.
And, you know, I think that's something that certainly has jumped out at me more, especially in the last year, that I surely knew from an intellectual perspective is just that this isn't. This world we live in is not a dementia friendly place.
You know, when you work in this field and everyone you work with speaks the same language and to some extent understands the disease and what may happen, what can happen, there's just a greater understanding of the stress, the unpredictability, and what's really challenging about it. And so when you work in this space, you kind of can get a biased view of what other people might understand and what they might assume out in public.
And I think that a lot of my experiences with my dad in the milder stages were at home or out in public spaces where he wasn't having as much trouble getting as confused or really not understanding what other people were asking of him. And now when I move through the world with him, I feel anxious, I feel protective, I feel like I am waiting for someone to comment or not understand.
And it's happened before. Like, he loves to golf and he's still very physically fit. And so when I go home, I often take him golfing. And so we to the golf course and we were inquiring about a tee time for the next day and he paid in advance for our tee time. And, you know, they gave him a bill and a check, kind of like at a restaurant. And so he wanted to add a tip to the bill for our nine holes of golf, and he didn't see a way to do it. So he asked the, you know, teenager working behind the register at the pro shop or whatever if he could add a tip, and the kid laughed at him.
And in that moment, I have not been so angry or wanted to slap a teenage boy nearly since the 90s, you know, since I was a teenager.
[00:11:35] Speaker A: Speak for yourself.
[00:11:40] Speaker B: I was so furious.
And in that moment, that was really the first time it hit me that, like, oh, he's going to have trouble like this, where people are not going to understand what's happening. They're going to see him, he looks healthy, and in short bursts he sounds healthy, but he gets very confused by the slightest change.
He will now more often than ever sort of say the wrong word, which confuses waiters and other people who are trying to interact with him.
And so I think that, like, as a dementia care professional, we forget sometimes that the world outside is not the same as what it's like in our clinic space or in our research offices.
[00:12:30] Speaker A: I think what's really vulnerable about you talking about this example is that some people might assume that because this is your life's work, you know exactly what to do in these moments and that it is somehow easier for you to figure out a path forward.
It seems like that is not the case. Can you speak more to that?
[00:12:49] Speaker B: Totally. I mean, I think that anyone who's been a mental health professional can tell you that some degree of professional distance is really necessary to apply what we know and use it for good.
That if you're too close to the problem, you're really not going to be much help and you can't see it objectively.
And so I think that that is absolutely true. And in those situations, I'm his daughter first and that's where the reaction comes from.
Even if underneath that there's a level headed neuropsychologist who probably would have a different response if, if it weren't my dad.
And I think one of the things I've always really loved about my job is that I get to interact with my patients and appreciate them for who they are right now, today, without having to grieve the loss of who they used to be.
Which I think is not something a lot of dementia patients get in their day to day life. They are being mostly cared for by people who are grieving a loss at the same time.
And it's hard to feel positive and accepting and excited to see someone when you're grieving who they used to be. And so I get this privilege of coming in and spending time with patients and not needing them to be anything but who they are in that moment.
And so I get to see them and treat them differently than their family does. But that is impossible with my dad. So I, I cannot meet him in the same way that I can with my patients because that grief is so real.
And it has been shocking to me how much makes it hard to see things clearly, to react in a way that, like, I know is professionally right or appropriate.
And I had to just kind of give up on the idea that I could be objective or that I was going to be able to do this right or better just because of what I do for a living.
I will say, though, as much as that has been true, there was a really meaningful shift, I think, in how I approach him and see him.
After he was formally diagnosed, we came home from the doctor's office and he had questions about what does this mean and how do they know and what will this look like, and I found myself slipping into the professional version of myself. And I realized I was like, oh, I have been talking to people with dementia about dementia for 10 years more.
I know how to do this. This I can do. And that wasn't so hard. Like, having that in my back pocket as something that I have done a thousand times, actually felt comforting in that moment. And I can't always bring that energy to my interactions with him, but I do know now that it's possible, like, it's in there. And in certain situations, I can turn on a more like, professional kind of demeanor with him when I think it would be helpful for him, you know, mostly.
[00:16:31] Speaker A: Yeah. Your research focuses on neuropsychiatric symptoms and behavioral symptoms.
Have you experienced any of those with your dad? And have you been able to sort of put on that hat in those moments? Or is that one of those times that feels a little more fraught for you?
[00:16:47] Speaker B: Yeah, you know, that, that's something. I think that even.
Even after we knew there was something going on and his memory was getting worse, he still, for the most part, had this same kind of, like, happy, go, lucky demeanor, very mild mannered. And so I guess I had thought, well, maybe it will be a fairly mild course, maybe it will progress slowly, maybe he'll be pretty stable for a while, and maybe he'll just be kind of pleasantly confused. Which I think, you know, I guess is sort of the best you can hope for in this situation is that a person does not experience a lot of distress as they progress through their condition.
And that has not been the case. And I think that's been one of the hardest parts of this, is that I decided probably six, seven, eight years ago to make the behavioral and psychiatric features of dementia my focus, my research area.
I did this because I had clinical experiences where I would see patients and they would be at a place where they had developed psychosis and were having dilute paranoid delusions that their family was stealing from them and causing them to become agitated and violent and their family couldn't handle them and take care of them effectively anymore.
Same with people who were in nursing homes where even kind of the highest level of round the clock care still cannot handle the level of agitation, outbursts and other behavioral symptoms. And so they need to come in, be hospitalized, and be evaluated and usually treated with some form of medication. And I saw just how much those symptoms affected the lives of the patients and their families, their caregivers, and how much extra stress and turmoil came with that. And I realized I had trained for A long time on understanding cognitive functioning in dementia. We know so much about it, comparatively, next to the behavioral features. And I was like, why don't we know as much about this? These symptoms are so important.
They are so stressful and difficult. There's a higher cost of care associated with these symptoms. Higher, faster institutionalization, more need for paid help.
And then to have them come up in my dad's care was something I just didn't see coming in the same way.
And so that has been especially challenging.
Trying to juggle some of the work that I do that is very behavior focused and then also getting, you know, reports from home that are also very behavior focused and many of the same symptoms that I, you know, work to understand better. In our research, participants are coming up for my dad and the feeling of, like, powerlessness. And even though I have, you know, lots of experts that I could consult about, like, what medication should we try first? And, you know, I come to you all the time asking, like, what should we do in this situation?
It just.
That particular overlap has been really tough because I. Mostly because, you know, I don't want that for him.
And these behavioral symptoms, I think they often feel like the most severe, extreme aspect of the disease. And so seeing that, you know, you just. You never want that for someone you love.
And it makes you worry about what's going to happen next and how we're going to deal with it. And I think it's one of those cases where the more, you know, like, the more you can worry. And so when you have seen what can happen, it's hard not to again, try to preempt every catastrophe. And, like, aside from putting someone in a padded room, like, there's really, like, there's a limit to what you can do to prevent someone from hurting themselves, hurting someone else.
And that's just an inherent challenge.
[00:21:38] Speaker A: Yeah, I mean, I think for everyone who's a caregiver, for someone who's new to this or someone who's an expert like you, what can feel kind of unsatisfying about managing these types of symptoms is we're never going to fully eradicate them. Right? They're always going to be there in some capac.
And normally, when we have a challenge in someone's healthcare or someone's life, we can sort of say, here's the solution to the problem, and everyone feels good. At the end of the day, this is the type of situation where even if we find some type of solution or way to better the experience, your dad's still sick and everyone's still gonna be struggling with it.
And that's a really tough thing to sit with.
[00:22:15] Speaker B: Yeah, absolutely.
[00:22:17] Speaker A: What if we ask the opposite question?
So are there things that have happened in your personal experience and your experience caring for your dad that are actually going to change the way you work with your patients or your research participants? Or maybe they already have?
[00:22:34] Speaker B: Well, you know, I think I have honestly heightened sense of gratitude for, you know, the research participants especially, but also my patients, just for the time they commit to coming in to be evaluated clinically, but then to go kind of above and beyond and want to donate their time and their energy and their effort to participating in research. I mean, this has always been something that, again, intellectually, you know, is like a selfless and generous thing to do. But I think that's something I didn't quite see as a provider that now I see clearly as a family caregiver, is how much those visits take out of you, how much coordination goes into getting someone in the car to the office on time without an outburst, without agitation.
And I think, you know, my mother is a retired nurse midwife.
I used to hang out in the hospital with her when I was a kid. Probably have, like, more trust in medicine and medical system than the average person.
But, like, I just did not get how tough these visits can be.
And especially after the fact, like, the idea that someone can come in and sort of keep it together for the visit, and then afterwards go home and decompensate, and you can have hours or days of difficulty that really is sparked by the visit itself.
And so I think, trying to keep in mind for me that when I do see patients in my office, especially when I have patients come in for these long assessments, that is a real feat to come in to do that, to hear the news we have to give families, there's so much processing and digestion that happens after they leave that I think as a provider, when someone leaves your clinic room, you kind of exhale and you get to move on with your life, with your day.
But knowing that on the other side of it, for the families and for the patients, there's often a lot of difficulty.
When a disease affects a person's insight into their own functioning, it's really hard to get adequate care while preserving their dignity.
Because when you have to address these things with a provider, you have to drop that veneer of being totally compassionate and telling, like, little white lies to avoid upsetting people.
And you have to be able to communicate clearly to their provider what's going on. And, you know, when that's they're getting worse, they can't do basic tasks, their behavior's more erratic, you know, things that they likely don't remember or aren't aware of.
Confronting those realities in like a 30 minute doctor's visit, like it can have a huge aftermath that maybe like we don't always appreciate or understand that what's happening for families when they leave the clinic room is very different and can be ongoing and really have a ripple
[00:26:11] Speaker A: effect
[00:26:13] Speaker B: and last certainly far beyond that clinic session.
[00:26:17] Speaker A: Yeah, it's a great point.
[00:26:20] Speaker B: So I understand of course as a provider why like people living with dementia need to be a part of their care and they need to be present for those visits and they need to be accounted for.
But sometimes it does feel like there's going to be a better way for families to communicate with medical providers about things that are like probably really distressing, difficult to hear about yourself, you know, without creating some unnecessary suffering. I guess I wish there were a better way of doing that.
[00:26:52] Speaker A: Do you have a way that you would like to do it if we lived in a perfect world?
[00:26:56] Speaker B: Well, I mean, I think I've seen like clinics set up in ways where, and I think maybe PMC does this to some extent where you sort of meet with a provider as a group and they can do a brief exam, get the sort of their self reported how things are going and then sort of having a separation point where the identified patient goes off with psychometrist or social worker or someone else with another task to do like brief cognitive testing where the family then gets the opportunity to speak with the provider alone.
When I do assessments, I almost always try to offer family partner a chance to speak privately.
Our exam space is not really set up for that. So I'm often kind of pulling them into a tiny office that looks like a closet, you know, so it's not. It doesn't always feel the most professional thing to do, but I feel like everyone deserves to have space to talk about what's hard about what's happening and not have to say it in front of the person they care for.
[00:28:10] Speaker A: Absolutely. I'm glad you brought up your mom.
We haven't talked a lot about her yet, but as you said, she's also a lifelong medical professional and your dad's full time caregiver.
When I work with extended families at the memory center as a social worker, I often encounter different types of tension or conflict between a, well, spouse, so let's say your mom in this instance and their adult children. So you.
Everyone has their own idea of the right way to do things, even though I think both of us know that there is no one right way, as well as the way that they want to both give support to the other people in their family and how they want to receive support from other people in their family.
And a lot of the times these things go unsaid, assumptions are made, hurts kind of pile up until it all explodes.
How have you navigated this balance of being an expert in the field, wanting to care for your dad, wanting to be there to help your mom with the caregiving and provide respite, but also navigating your family dynamics and your family hierarchy?
[00:29:19] Speaker B: Yeah, I mean, it is definitely complex.
And I think that our experiences have been so different.
I think right now we are in a good place in the sense of we agree on a lot of things. So we don't have very different ideas of what good care looks like for my dad, which I think is a great starting place.
But when I look back, I think certainly there were things I could have done differently.
And I think especially early on, my mom was really able to see his decline more clearly.
And, you know, they. They were peers, essentially. And so she has her own experience of aging as sort of a reference point.
And she really knew something was changing before I was really ready to acknowledge or admit that could be happening.
And I was more afraid, I think, than she was.
My mom, I will say, has always been a very, like, solution, focused.
I mean, she's a nurse.
She's got that way about her where she wants to figure out what we can do about it.
She does not sugarcoat things. And she just wanted me to take it seriously.
And it was really hard for me at first because I think I did know that if this was really happening, it's going to open a whole can of worms.
And that it would mean confronting something that was very, very scary.
And so, like, I think throughout the whole process, my response to his illness has felt more emotional, maybe more raw.
And I think partly it's just because he's my dad, and he's not just a person. He's my primary attachment figure. He's a symbol of safety and protection from a very young age. It's like when something happens to your father, it feels like it threatens, like, the softest and most vulnerable parts of you. This, like, inner child or.
Yeah, it's. It's just. It's different from seeing something difficult happen to, like, your spouse, your friends, even your kids, because he's the one who is supposed to give you A sense of, of safety.
And he was such a good and caring father that he really did that, you know, and so.
But he's something different to my mom.
And it doesn't seem to shake her sense of like security in the same way it can for me.
And so I do, I always want to be helpful to my mom. And when I go home now I'm often going home so that she can go stay with her sisters, get out of the house, do things that she wants to do and have time away and know that he's being cared for.
But I want to be there for her emotionally too. Except that I feel more often than not she's comforting me.
And I think that's just because
[00:32:58] Speaker A: it
[00:32:58] Speaker B: has been more emotional.
And I think another thing that plays into that is that for her, you know, she has seen him change like in that sort of slow motion of day to day life where for years this has been going on.
And I think that when you're, when you don't live in the same place especially and you have to travel home to really see and lay eyes on, on the situation, those changes seem more discreet because you'll visit for the holidays and he's able to drive and then you come back a few months later and no more driving.
And so like it just happens in a more stepwise way when you're coming and going like that. But for her, she's there every day, it happens more slowly. It's almost imperceptible, you know, the rate at which things change. And so that's her reality.
It's maybe less jarring that way, but. But it's more frustrating, right? Because that's the life she lives every day is, you know, and it's increasingly getting smaller, you know, the less he can do, the more she has to do. And we're now getting to a point where, you know, there's a concern about safety if he's left at home alone.
And so, you know, she feels like it's what's really worth it to leave the house for anymore.
And as you can imagine, like your world just shrinks and you're reliant on people coming to you and it doesn't feel worth the effort to like go out and do things, especially if he's going to get confused and maybe agitated. And it's just so easy to let that limit you.
And so I see her struggle as is different. It's, it's definitely hard and maybe she does less crying on my shoulder, but I know that she's dealing with like the everyday stress and frustration and a grief too. In her own way, it's incredible that
[00:35:31] Speaker A: you're able to go down there and help her out in that way.
I think you were down there earlier this month, right?
[00:35:38] Speaker B: Yep.
[00:35:39] Speaker A: How have you managed to be working full time? You're also a stepmom and now you're a caregiver. So you fall really squarely in what we call the sandwich generation.
Caring for multiple generations of people at the same time and also working a fairly intensive job. I don't know if people understand that the life of an academic is that there's no respite, there's no break. You always kind of have to keep pushing.
So how have you managed to sort of navigate that tension between all those different areas in life and how practically have you been able to take time off of work to go down there?
[00:36:18] Speaker B: Yeah, I mean, I think the question of how do you manage is sort of like, well, I don't.
I am frequently upset and overwhelmed.
But in reality, I think you actually were the first person to suggest that I apply for FMLA and encouraged me, saying, you're not going to run out of it for this kind of situation. You take it intermittently, it replenishes next year.
There are ways of taking it where it's not just one big lump of time as if, you know, like you were taking maternity leave or needed to be out sick for, you know, a major event.
And so I did just that. I, you know, applied for intermittent fmla and actually one of the first people who gave me a sense of, you know, just how many people are likely struggling with this privately was someone in our HR office when I submitted my forms and, and I was like, how do you go about doing this for long term care? I'm caring for my dad. He has Alzheimer's. And her response was like, I cared for my parents too, and I know how hard it is.
And I was like, dang. It's like it affects so many people.
And I'm grateful to have people not only in HR but in my center who are very sympathetic. And so I have, like I said earlier, been pretty open about it and interested in disclosing this both to kind of manage expectations from the people I work with of saying like, hey, some things are going to be late, here's why.
And I've been very fortunate, you know, that I work in a research center that has allowed me to be very flexible and that clinically I've been able to kind of make little adjustments in my schedule. So That I can see the same number of patients, but while taking some time off.
This of course means I double up on some weeks and kind of wind up regretting it. But it's one of those things where you just, you can't make more time in the day. So you have to make little adjustments here and there.
Work when you can, but, you know, give yourself like a really healthy dose of grace. And understanding that like some days picking up a paper on psychotic symptoms in Alzheimer's disease is just not going to be doable.
It's just too close to home.
And so on those days I will do something else.
But it is a constant tension between work and home.
It's almost enough to make you understand why someone would want to be a trad wife, that trying to do both.
Have a home life where you feel like you're providing good care and packing and nourishing lunch for your kid and keeping the clothes clean and calling my parents and making sure they're okay too. It's like, yeah, I don't want to work a whole job on top of this. Like, this is a job, full time job in and of itself.
But I think the thing is that I really love my work.
And when I'm with my dad, that feels like the most important work I could be doing in that moment.
But then I come back home and I realize that, like, caring for him also makes my actual job more meaningful.
And I feel like, yes, it is hard to open that paper draft that's describing things that are happening in his life at home.
But if I don't do it, who will?
And I do feel a stronger motivation to keep going with the academic work, with my clinical work, so that we know more and we find better ways to help people, even if it's just better understanding what's hard about this.
So, you know, you always feel like you're not doing enough.
And I think that's true in academia, even under the best circumstances. Right. We're kind of like our culture just glorifies productivity at all costs. It can be cutthroat and it can definitely give you a sense that you're never doing enough.
So adding a second caregiving role on top of this kind of a job and parenting, it does feel like it stretches you to the limit at times.
And you know, we talk a lot about parenting and juggling work and home and how challenging that is. And I think that, like, I have found between my stepdaughter and my dad, that I don't have actually the bandwidth to worry about Both of them at the same time.
[00:41:51] Speaker A: Time.
[00:41:51] Speaker B: I just have to choose who I'm going to be worried about on a given day, because they're both like, yeah, they both give you plenty to worry about.
So I do have to, like, limit it sometimes and just say, like, I cannot. I can't be worried about this right now. I have this other thing to attend to.
I will say, though, that spending a lot of time with my dad does give me kind of a weird, actually helpful perspective on, like, parenting, which is that, you know, with him, I'm watching him decline, and you're watching development in reverse, you know, and with him, we have to worry about what comes next, what will be hard about it that we don't anticipate.
And with kids, you also have this thing where they're always changing and they're always in a stage, and as soon as you get the hang of it, it changes. And dementia is very similar.
As soon as you figure out the best way to care for somebody in this stage, it's gonna change, and then those same things are not gonna work the way they used to, and you need to come up with new ways of looking at it. But it really makes me realize that with kids, like, they're gonna be fine.
Like, they have this biologically driven upward trajectory where they are gonna keep growing and keep learning and keep changing no matter what you do. Like, even if it was totally hands off, she's still gonna be a different person, a smarter person, a more savvy person in six months, you know, than she is today.
And it almost makes you feel like, oh, okay, like, nature's gonna take care of her in a way that it's not with my dad. And.
And so, at least in some sense, I get this feeling of, like, okay, we've gotta worry about him and what comes next. And I can worry about her, too, but in a bigger sense, she's gonna be okay. She's on the right trajectory, you know, and nature's gonna do its thing and she will grow up no matter what.
[00:44:14] Speaker A: Yeah. It really puts that decline into sharp relief. People make comparisons to me a lot about caring for a toddler and caring for someone with dementia. And while I think that can be helpful in terms of thinking of techniques, I try to sort of steer people away from it because. Because I think it sort of belittles the grief that's inherent in watching someone who's not gonna grow out of it, or they will grow out of it, but in the reverse way that you want them to.
[00:44:40] Speaker B: Right.
[00:44:42] Speaker A: When you are struggling like that when you're having a really hard day.
What have you found helpful in terms of coping strategies?
[00:44:51] Speaker B: Well, you know, I think it's tough because like I said, sometimes you just have to give yourself the space and it can often feel like, like, and by that I mean really time to sit with what you're feeling and not try to push it away or ignore it or work through it. And that means giving it time. And it's something that I think a lot of us feel like we don't have a lot of.
And so like part of it is just accepting that there are going to be some times when you are not of much use to other people and that that time is necessary for you to like, do what you're doing and keep going.
So there's a lot of like acceptance and I guess even forgiveness for yourself that like you're not going to be operating it maximum capacity, you know, for a long time. And you have to start thinking of your like energy, your time as resources that are finite and that you can only give so much to certain things. But when you're in the thick of it, I mean, gosh, that's really one of the hardest things because I think this is true for people with chronic illnesses too. When you have something that's sort of ever present and is always hard, you definitely worry about always being like a downer or having a problem that won't go away and you're kind of afraid that you're gonna, people are gonna run out of grace for you or sympathy or they're not gonna wanna hear about it anymore.
And so in those moments it is a question of like, ooh, should I, like, should I talk to someone about this? Should I let someone know that how I'm feeling or like, I don't know, have I leaned on them too much recently?
Maybe I should just like try to refocus or do something else.
But like I said, I'm someone who definitely seeks out other people when I'm in those kinds of situations.
And it's hard for me to kind of pretend like I'm not feeling affected by it on a bad day.
I have been in a few support groups that meet online, which has been really super helpful.
You get to hear other people's experiences, you get to hear ideas of ways that you could approach a situation differently.
Um, but you also just get this camaraderie in the sense that like other people are there who do understand like what that day to day experience is like and that's so valuable. Like, having sympathy from people who love and care for you and want the best for you, but who have not been through it is, like, it's great.
It's so important, but it's not the same as talking to people who, like, this is their lived experience, too.
And so I really can't say enough about the support groups.
We have one tomorrow, I think, and those are something that. I used to run support groups when I was in graduate school, and now I'm like, yeah, we need these all the time in every place.
[00:48:31] Speaker A: Does it feel tough to be a clinician in a support group, in the client role this time?
[00:48:38] Speaker B: Sometimes.
But, you know, like, I feel like people rarely.
It's not like people are asking me for advice all that often.
If I think there's something, like, medically useful, I will certainly chime in, but for the most part, no. I think they see me in the same way as everybody else, and.
And it's kind of nice to just be, like.
Just be a caregiver.
[00:49:12] Speaker A: Yeah.
[00:49:14] Speaker B: And not have anybody expect anything different from you.
[00:49:16] Speaker A: Yes. Sounds kind of liberating in a way.
[00:49:19] Speaker B: Yeah. Yeah, yeah.
[00:49:21] Speaker A: Emma, what am I not asking you that you would like to share with other people who might be in this situation?
Perhaps just listeners in general?
[00:49:35] Speaker B: You know, I'm not sure. I guess. I guess I wish I had, like, a wish list or something that people could do, you know, to help or.
You know, it's tough because, like you said, in this field, we are, I think, used to not having a solution or all the answers. And there's a level of uncertainty that I think we become accustomed to.
And so it's hard to know what the answer would be and what, if anything, like, people can do. But I think, you know, really my hope is that anybody who is listening, who doesn't feel comfortable talking about it, you know, that might be something eventually they decide to share or at the very least, know that they're not alone in the. In the situation and that, like, there are lots of us out there.
I think it would be lovely if there were a way to find a community, you know, in those people. I think it could be really powerful to, like, have a support group with people who are dementia care professionals and also family caregivers.
You know, maybe that will happen someday.
But I think at this point, I think if, you know people who are going through it, ask them how they're doing, stay close.
And if you work in this field and it's not affecting you personally, just know that you have colleagues, you know, who work in the same clinic hallway as you, who very likely are, whether they'll tell you or not.
And, you know, I know everyone in our offices, you know, like, nobody is out there dehumanizing people with. Living with these conditions. But I think that, like, you know, remembering that our families are your patients, too, and that it could happen to anybody, I guess.
[00:52:16] Speaker A: Emma, thank you so much for doing this. This was incredibly generous. I think a lot of interviews or discussions about grief and loss and this type of ambiguous loss particularly happen after someone has died or after your caregiving journey, if you will, is over and you are being generous enough to share the middle of the story where you're still figuring it out, still making meaning. There's not sort of a tidy bow tied on it.
And that is a place that a lot of people don't feel comfortable sharing. But I think it will be to the benefit of certainly every family caregiver that I work with and that listens to this. So thank you so much. You're the best.
[00:52:59] Speaker B: You're so welcome. Thank you. This was really lovely. And I'll take any chance I can get to talk about my dad. So it's something that I really do welcome questions about and would be happy to talk to people about if they're hearing this and want to chat more.
