Dr. Regina Koepp 0:00

So there's often a lot of confusion about roles in the family in this stage and that's why I call it the ambiguous caregiving role. And, and often this place where you're, you're now you're helping now you're not. There's lack of clarity about what's actually causing the problems in your older loved one like, does your loved one have dementia? Does your loved one have a medical problem? Is your loved one malnourished or experiencing a urinary tract infection? There are all sorts of questions about what's causing these changes. They could be behavioral changes, physical changes. And this can create a sense of ambiguity for both the older adult and you. So when you're an ambiguous caregiver, there's a struggle with understanding your role. Am I a caregiver? Am I not how much does my loved one need me? How much do they want to be on their own? there is lack of clarity about the illness, and then there's managing a lot of complex dilemmas and binds around safety and autonomy. So how do you step in with respect and honor your loved ones dignity and autonomy.

Dr. Regina Koepp 1:15

I'm Dr. Regina Koepp. I'm a clinical geropsychologist, which means that I'm a psychologist who specializes with older adults and families. And this is the psychology of aging podcast, your go to resource for Mental Health and Aging.

Dr. Regina Koepp 1:35

Welcome to the 70th episode of the psychology of aging podcast. Last week, I was interviewed by Natalie Ekdahl, who is a business woman and founder of BizChix. She's an entrepreneur and, and helps other women entrepreneurs. She reached out to me for an interview, she wanted to interview me, but really it turned into a conversation about caregiving. She is caring for her mom, who experienced a pretty serious mental health condition after her dad was diagnosed with aggressive cancer and then subsequently passed away. Natalie also has three children who are at different stages in their own development. So she has a 19 year old who's launching and going to great university and little kids like maybe I think the youngest is six. And so she has a lot on her hands. She also has a grandmother who's living who she also assists. So in this interview with Natalie, we talk about her experience of becoming a caregiver and a lot of the family dynamics at play. And just about the lessons she's learned as a caregiver and asks me questions as a psychologist and a person who specializes with older adults about the caregiving journey and some of the answers to questions that she wished she had earlier on. So I'm gonna link to that episode in the show notes of this episode, so you can check it out. It's actually one of my favorite interviews of all time. And she shared with me that it's one of her favorite interviews of all time, too.

Dr. Regina Koepp 3:24

So today in MY episode, I wanted to spend a little bit of time sharing with you What is a pretty common experience for families at the beginning of the caregiving journey- I want to start by talking about family relationships in older adulthood. And I'm going to focus on relationships between an older adult and their adult child. For this episode, I do want to talk about one of the most challenging role transitions for an older adult and an adult child. So as to adults, you potentially as an adult child, and then your older adult parent, are living side by side. The goal in adulthood is in Western society is to what we call differentiate from our parents, so that we live side by side and kind of build our own life just in family just as they built their own life and family. So as your older adult parent ages, you were also growing and developing right alongside of them. And this is important to be mindful of because our relationships with our aging parents, before they need caregiving, kind of sets the tone at times for what caregiving actually ends up looking like. And so before you're even asked as an adult child to come in and help assist your older loved one. You're in a In a place with your older loved one where you're maintaining a relationship, and you have a status quo or an equilibrium between you and that your role before you actually become a caregiver is you're just two independent adults living side by side, at this point in your life, there's probably little concern about the health of your older loved one. And there's little to no request from from them to you for assistance.

Dr. Regina Koepp 5:29

Some of you might be in this place, or some of you might have remembered that place, if you're listening. And this is important because this this place in time where you're not yet a caregiver, but you're reflecting on your relationship, or maybe cultivating your relationship with your older loved one, which I would recommend happens in the context of our unique family dynamics, or unique family histories or family roles.

Dr. Regina Koepp 5:55

So the role in my family when I was growing up, as I had the role of an over function... there was a lot going on in my family, my mom was a single mom, no support from our dads, she had five kids, I was the only girl I liked organization, I like I was bossy. And I kind of took on the role in the family of over functioning. And so that I could get my needs met. And I, I wonder, and I struggle with over functioning in my own life today. And so I work on trying to, to balance that out. But But that's an example of how we all come into caregiving with our own unique family dynamics, histories, roles, that was my role in the family. So when my mom or my in laws start to need care, I might have the tendency to take on the role of over functioning. But what happens to me when I'm doing too much is I get resentful. And so I have to really pay attention to how I'm doing so I don't get resentful. So at this place in time before you're even asked to assist your your older loved one or your aging parent, it's important to know that the family dynamics that existed prior to caregiving often influence the course of caregiving. And so I just invite you to take stock of where you're at with your older loved one. How often do you talk how close are you when you do talk? How much of yourself Do you share? How much of them do you invite into the conversation.

Dr. Regina Koepp 7:32

If you lived in a family with a lot of secrets or betrayals, you might be suspicious or skeptical of information you receive once you become a family caregiver. If you lived in a family in which people were private and didn't talk about illnesses or challenges, you might worry that you won't get all the information that you need to provide care down the road, or what's actually expected of you. And if you lived in a family where there were long periods of estrangement, or abandonment, you may be more likely to experience resentment down the road as a caregiver, like me. I'm not even a caregiver. And I already noticed, I get my little pings of resentment.

Dr. Regina Koepp 8:17

So here at before you're even a caregiver, the goal in this place in time is to take stock of your family history, your role in the family, and prioritize your health and wellness, as well as cultivate the relationship with your loved one, if that's healthy for you to do, especially if you anticipate being called in to help them in the near future. It can really help to start to build and rebuild and reshape the bond that the two of you share. In the midst of caregiving, you're going to be asked to help with lots of intimate tasks. And I'm not talking like physical intimacy, I'm talking about emotional intimacy to you're going to be invited into very private discussions around money around health and wellness around end of life. So the closer you are in your healthiest and most optimal place in your body in your mind, the healthier your relationship is, the better the better for Caregiving down the road.

Dr. Regina Koepp 9:26

Okay, I want to talk about that what happens when we start to become a caregiver? This doesn't happen to everyone, but there is some tradition with this. And so what I often hear families struggle with, is this becoming a caregiver stage. And I call this the ambiguous caregiver role. And that's sort of like now I'm caregiving. Now I'm not now I'm helping now I'm asked to back off, my loved one doesn't need me anymore. So in this stage is It's pretty common that your older loved one may have a medical or mental health condition that's impairing aspects of their life. And that's creating some level of need for assistance.

Dr. Regina Koepp 10:10

So in this stage, your older loved one might be in risky situations, but still have the capacity to make decisions for themselves in many aspects of their lives. And so there's often a lot of confusion about roles in the family in this stage, and that's why I call it the ambiguous caregiving role. And, and often this place where you're you're now you're helping now you're not, there's lack of clarity about what's actually causing the problems in your older loved one like, does your loved one have dementia? Does your loved one have a medical problem? Is your loved one malnourished or experiencing a urinary tract infection? There are all sorts of questions about what's causing these changes. They could be behavioral changes, physical changes. And this can create a sense of ambiguity for both the older adult and you. So when you're an ambiguous caregiver, there's a struggle with understanding your role. Am I a caregiver? Am I not? How much does my loved one need me? How much do they want to be on their own? there is lack of clarity about the illness. And then there's managing a lot of complex dilemmas and binds around safety and autonomy. So how do you step in with respect and honor your loved ones dignity and autonomy?

Dr. Regina Koepp 11:30

So let me give you some examples. So here's an example of how the role gets confused. But I've heard from people in this ambiguous caregiving role and place, well, I'm not really a caregiver. I'm not helping with bathing or grooming. So I'm not really a caregiver. And then they might say, but I am helping with these other things like helping get to the doctor and transportation. But I'm not a caregiver, am I? So do you hear the questioning there? That's role confusion. That's like, Am I a caregiver? Wait, what is a caregiver? Exactly? Do I meet the criteria for that person? And I would say yes, if you're if you're helping with transportation, and taking your loved one to doctor's appointments, Probably so. But it's a journey, I don't get to decide when you're a caregiver, this is your process, not mine. Here are some examples of what I mean when I say dilemmas and binds, my loved ones still living independently, but making really costly mistakes with their money. And I worry that they'll be taken advantage of when do we take over. So that's a dilemma.

Dr. Regina Koepp 12:41

My loved one is still driving, but we're worried if we take away the keys, they'll be isolated and alone, and driving as their access to the world, demanding that they stop driving, I worry will rupture a relationship. And if we don't say anything, and they keep driving, I'm so worried that they're going to get my loved one's gonna get lost or in an accident. What do I do? And so that's a bind, and a dilemma. And then there's uncertainty about illness, like if your older loved one has a dementia disorder, and you don't understand dementia, which is very common, we don't have a lot of great information in society about what dementia is what's typical with the brain and with aging and what's not. And I have some episodes about that, that I'll link to here today. But you might find yourself saying or I've heard other caregivers say this, that it's hard to know where their personality ends and the illness begins. Or she's faking it, she could do it if she wants to. She does it for other people. She just doesn't do it for me. And so there's some uncertainty there like, Is this an illness? Or is she faking it? Is she doing it to manipulate me? I would say generally, no, it's not a manipulation tactic. There's probably something going on. But there's uncertainty there. You don't have answers. And that's, that's where we're going to go next. So what do you need to do when you're in this place? How do you manage all the ambiguity and chaos in this ambiguous caregiving place? So when there's confusion and uncertainty about your role, about the illness, and when you're contemplating really, really complex dilemmas and binds with your older loved one, you're more likely to experience guilt, shame, frustration, stress and overwhelm. And that makes sense because you don't have secure footing. It's ambiguous. Now I'm helping now I'm not now I'm caregiving. Now, I'm not I'm not a caregiver, am I? What's my role here? What's going to be helpful? How do I handle this?

Dr. Regina Koepp 14:46

So the goal here is, is to work on gaining clarity so you get some sure footing, and you can do that by learning about the illness that your your loved one has if if they You don't have a diagnosis and your concern, you can do that by helping your loved one to get diagnosed with whatever's going on to like get evaluated, you would start with your primary care provider. It's also if you do have a diagnosis and have had an assessment of some sort, a medical assessment or a mental health assessment, it's important to know the prognosis of the illness. So the prognosis is, what does the future living with this illness look like? What is a future decline look like? How long does that process take, understanding what the condition is, what the prognosis is, what resources are available to help your older loved one and you, the more you can gather information and gain clarity about what's going on, the more you're you're going to be able to manage all that guilt, shame, frustration, stress, and overwhelm. And the more clarity you'll have about your own role in helping and this clarity like once you have clarity about what's going on what the prognosis is, what your role is, what other family members roles are, it will help you and your loved one and the family more accurately manage those risky situations in binds that we talked about. Because on some of those binds, you might not be able to answer those. Just as a family, you might need a professional to step in and help you understand and answer those questions based on your loved ones ability and capacity. And that those are decisions that are made by professionals. Of course, you see your loved one. And if they're risky, and you're concerned, you might need to step in. But when it's like this ambiguous place, you might need a professional to help. And so the professionals that can help you, like I mentioned are the primary care provider.

Dr. Regina Koepp 16:55

If your older loved ones refusing to see a primary care provider, I have a great resource for that, that I'll link to in the by in the show notes. And it's all around aging parent refusing to go to the doctor, try these things. If you have a good relationship with the primary care doctor and you're worried about dementia, or other mental health problems, you can get access to mental health providers in in the directory that I'm putting together at mental health and aging.com. You can search for provider providers in your area. If you don't find what you're looking for in the provider directory related to mental health providers, all you have to do is submit a form that's connected to the provider directory. That form comes to me and my team at the Center for Mental Health and ageing. And we'll find providers and email them to you. Of course, there are many more role transitions along the caregivers journey. This is one that I think is particularly intense, the ambiguous caregiving role and stage. And so I highly recommend really maybe listening to this episode twice, really thinking about your own relationship. I'll also be linking to caregiving. Other other role transitions in caregiving in the show notes. If you'd like to hear more about the experience of Natalie ekdahl and our conversation, I highly encourage you to check that out. And I'll also link to that in the show notes as well.

Dr. Regina Koepp 18:27

Next week, I'm going to be taking a break from the podcast for a week- I'm working on a big project. But if you're not yet connected to my email, get connected to my email, and you can can link just by downloading something in the show notes. I have a guide in the show notes around mental health and memory loss for families. And if that resonates with you download that and you'll you'll be signed up for my email. Or if you're a professional, I have a professionals guide as well, you can download that and that's in the show notes too. So I would encourage you to get connected to the email. Because Next week I'll be sending an email about pain management among older adults. And this is a guest sort of blog post by my colleague, Dr. Jennifer Steiner, who is a Board Certified health psychologist and specializes with pain. And she's written two articles that I'll be sharing with you next week in the email on pain and aging, and what caregivers can do to help their loved one manage pain. So join the email and check it out. And I look forward to seeing you in two weeks. If you like this episode, be sure to subscribe and leave a review wherever you listen to podcasts. It really does make a difference. Bye for now.