Dr. Regina Koepp – Understanding Older Family Dynamics and What Are the 6 Stages of Caregiving?

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Dr. Regina Koepp
Dr. Regina Koepp

Dr. Regina Koepp is the founder and CEO of Gero Champions, a company that provides training and education to enhance the mental health and wellness of older adults and their families. Dr. Koepp is the creator and host of the Psychology of Aging Podcast where she discusses aging and caregiving. She has been featured in the Chicago Tribune, Baltimore Sun, Insider, and is a contributing writer at Psychology Today.

Topics of Discussion:

  • [02:12] Introduction
  • [02:58] What is the best way to study caregiving and what
    are some of the important roles of a caregiver?
  • [09:14] What do you think it is like to be a caregiver during the pandemic?
    • This is a very painful time, please take care of yourself. If you or someone you know is in crisis or struggling with thoughts about harming yourself or others, please reach out to the National Suicide Prevention Lifeline at 1-800-273-8255  or click on the link: https://suicidepreventionlifeline.org/chat/
  • [12:21] What policies need to be changed to better support caregivers?
  • [16:50] Loved ones doing the caregiving many times are scrutinized by Families members
  • [18:15] The Caregiver’s Journey, discussing the 6 stages of caregiving
    • [18:28] Stage 1: Pre -caregiving stage
    • [21:35] Stage 2: Early caregiving stage – “The Ambiguous Caregiver”
    • [26:24] Stage 3: “Yes, I’m a caregiver – There is no denying it”
    • [30:17] Stage 4: Moving toward death – “The Steward Stage”
    • [33:01] Stage 5: The bereavement stage – Your loved one has passed and you’re grieving
    • [34:02] Stage 6: The rebuilding stage
  • [37:54] What are some things the average person can do to maintain their mental health as they grow older?
  • [40:56] Why do you think it’s so uncomfortable in our culture to discuss aging and end-of-life plans?
  • [43:19] Which has a bigger impact on mental health for older adults?

Dr. Regina Koepp is a board-certified Clinical Psychologist, Gerontologist, former Assistant Professor at Emory University School of Medicine’s Department of Psychiatry and Behavioral Sciences assistant professor, and former staff psychologist at the Atlanta VA Health Care System (VAHCS), where for more than a decade she provided direct patient care and consultation on the Gero-Psychiatry Outpatient Mental Health team.

This is a very painful time, please take care of yourself. If you or someone you know is in crisis or struggling with thoughts about harming yourself or others, please reach out to the National Suicide Prevention Lifeline at 1-800-273-8255 or click on the link: https://suicidepreventionlifeline.org/chat/

Learn more about Dr. Koepp at https://www.drreginakoepp.com/


Hanh: 2:12
Today my guest is Dr. Regina Koepp. She is a board certified clinical psychologist, a gerontologist, and also a former assistant professor, a staff psychologist at the Atlanta VA Health Care System for more than a decade. She provided direct patient care and consultation on the Gerald Psychiatry Outpatient Mental Health Team. So I’m eager to talk to her today about the care givings journey and the importance of understanding older family relationships. So Regina, thank you so much for joining me today in Boomer Living.

Regina: 2:47
Thank you so much for having me. I really admire the work that you’re doing with this podcast. So thank you.

Hanh: 2:53
Thank you. So I wanted to go through some high level of caregiving. What is the best way to study caregiving and what are some of the important roles of a caregiver?

Regina: 3:03
In terms of studying caregiving? I that’s really interesting because what I hear from caregivers is I actually didn’t know I was a caregiver until kind of far along in the process. I know today we’ll talk about the stages of caregiving and you’ll see what the caregiver’s journey looks like in the beginning. Many caregivers, even though they are providing care, actually don’t see themselves as a caregiver. In terms of receiving training for caregiving, it really can depend on the illness of the care recipient. I like to talk about caregiving in the context of relationships, there would be no caregiver without a care recipient, there, and so the relationship is essential. Typically care is not needed unless there’s an illness. And different types of care is needed for different types of illnesses. So there’s a different type of caregiving for dementia, for example, than for cancer, there’s a different type of caregiving for somebody who’s had a stroke than for somebody who has heart disease and has not had a stroke. And so there’s, there are different types of caregiving and too, to really learn how to become a caregiver, takes time and practice it also, it can help though, if we’ll talk about these stages, if you have a lot of clarity around the illness and what other caregivers experience with that particular illness in terms of caring for the illness. One of the challenges with educating caregivers is what I just mentioned, which is that many caregivers don’t know that they’re a caregiver, and so don’t know to ask for help around the caregiving sort of dynamics.

Hanh: 4:43
Yeah, I am right there with you. To be honest, I didn’t know, there was a profession called caregiving. Growing up, that’s what we were taught to do is take care of your parents, until you go through a phase in life where you’re such at a loss, not knowing what that journey is going to be like, upcoming years. And sometimes feeling very alone, feeling very strain on your health, on your mental and emotional, and on your family, and sometimes even feeling ashamed. So, I think it’s so important to bring light that, there’s caregiver, caregiving across and that we should give them a lot more credit. And many of us, in my opinion are going to be on the receiving the caregiver or the caregiver. So that’s how life rolls.

Regina: 5:30
Yeah, Rosalyn Carter has a quote that kind of speaks to that Hanh, the quote is something like “There are four types of people in the world, those who provide care, those who receive care, those who have received care and those who will receive care.” care, those who receive care, those who have received care and those who will receive care.” you’re right on the money.

Hanh: 5:46
Yeah. If caregiving is so important, why aren’t caregivers being compensated more?

Regina: 5:51
Oh my God, and do you know, and it’s the reason that many older adults age in their home and can stay in their home is because of family caregivers and formal caregivers. So formal caregivers are paid poorly and family caregivers are not compensated well, and then are put in these. Impossible dilemmas of “Do we liquidate all of our assets so that we can qualify for Medicaid?”, because care is forbiddingly really expensive and all sorts of dilemmas that families are faced with, and then very little compensation, if at all. And, not only financial compensation, but social recognition for the important role that they’re playing in society, really, and in their loved one’s lives, and then that’s like at a greater system level. And then the majority of caregivers are actually still working. So more than 60% of caregivers actually still work close to full time. And so then their employer actually might not even have an adequate family leave program to help family caregivers, help an aging parent or help a person in their family who’s sick. And so there are these greater societal issues and financial issues, then there are business issues and sadly, these roles tend to fall to women who carry the child rearing responsibilities and compromise work for that, and then also have our sandwich with aging parent responsibilities. And, and if the workplaces are not set up to acknowledge or facilitate an opportunity for employees to take on some of these responsibilities, it puts people in a really tight bind to make difficult choices.

Hanh: 7:34
I’m with you. I asked that question with some sarcasm behind my voice and a little bit of comical behind it, is because, I’m walking that journey It’s emotional, physical wellbeing strain, and you and your family, but then somewhere along the way, you have to have a sense of humor, you know as you adapt, as you accept what life will be. Uh, what life is like for the years to come. But I know that question, there’s so many stakeholders and I wanted to bring that question to, to put it out there in the open so that we’re all recognizing that it is such an important role, but it’s underappreciated.

Regina: 8:11
150%, if, since we’re going to, we’re going to compensate for the appreciation that people aren’t getting. We’ll overcompensate a little bit, 150% agree with you.

Hanh: 8:19
Absolutely. Now, what do you do when caregiving becomes too much, especially, for one child or even on one spouse? What is your thought? How do people deal with that?

Regina: 8:30
Well, it is so important to broaden your circle of support, and so that could be formal caregiving, that could be informal caregiving, that could be asking friends and family for additional finances, to hire formal caregivers or time. “Can you come and help on these days or, can you do the doctor’s appointments? Can you help with meals?” It’s really advocating for more support for your loved one and yourself when you’re overwhelmed and yeah. At a certain point in a caregiver’s journey, there will come a time that the needs outweigh what one person can do and support is essential, additional support, because it’s too much for one person really.

Hanh: 9:13
Yeah, it is. So what do you think it is like to be a caregiver during the pandemic?

Regina: 9:19
Oh, well so caregivers during the pandemic, actually, the CDC did a study a few months after the pandemic started. And I think they surveyed adults in June and then put out their report in August of 2020. And in that study they found that caregivers actually report the highest levels of depression, anxiety, substance use, and suicidal thoughts compared to other high risk adult groups like essential workers, healthcare workers, African-American and Latin X folks. And so caregivers actually are carrying the weight of, I really see it in families, we’re here talking about families, right? Caregivers and care recipients. There is a lot of concern about how the pandemic will affect the person that you’re caring for, and so what happens oftentimes when we’re in a caregiving role is we hold, we become the container for our distress and for our loved ones, distress or potential anxieties. And so the pandemic has added a lot of uncertainty on families living with illness. It’s caused a lot of challenges for families living with dementia because adult day programs have closed, because some of the structures in place that would help families to live a consistent structured life are gone. Maybe you’re still working. Now you have a level of with dementia, who’s restless in the house, and you’re trying to host a meeting. It’s really chaotic for caregivers. And so caregivers are actually reporting higher rates of depression, anxiety, substance use, suicidal thoughts. And I think it’s something like 30% compared to like close to 7% of non caregiving adults. So it’s rates are really high. And then this, I know you’re, you speak to a lot of older adults here, the general older adult not living with the dementia disorder though was also surveyed in this study and older adults actually report the lowest rates of depression, anxiety, substance use, and suicidal thoughts and high rates of resilience. I’ll say actually caregivers are also highly resilient. Even studies that look at caregiving. Caregivers do show higher rates of depression and anxiety, and stress and distress while caregiving, even without the pandemic. But actually there are, there is a myth out there that caregivers get sick and die before the people that they’re caring for. You might’ve heard that. So there’s research that proves that wrong. That actually caregivers, even though there are higher rates of depression, anxiety, and stress and distress. Caregivers are also remarkably resilient, and are finding meaning and purpose in the role that they have. And it’s not diminishing their length of life or causing more illnesses. It, that, does happen in adults who are not caregivers who have depression, anxiety, and distress, but not in caregivers. So that’s kind of interesting phenomenon that we see. So that’s kind of interesting phenomenon that we see.

Hanh: 12:21
The act of caregiving is one of the most mentally and physically taxing jobs imaginable. So caregivers, in my opinion, are truly the backbone of society. And yet they receive very little support. So in your mind, what policies need to be changed to better support caregivers?

Regina: 12:38
Wow. So this is a great question. Bernay Brown interviewed Melinda Gates and they were talking about the importance of policy change around family caregiving as well. Back to that point of compensating caregivers financially, creating better policies and workplaces to accommodate family caregivers. So, if more people, I’m in my forties, I had my kids in my forties, so our parents, my husband’s also, closer to 50 than he is to 40 now, and so we have little kids, tiny kids, like a three and a five-year-old and aging parents. Our parents are much older, right, then, in a sort of cohort before us who had children younger. And so, now, because people are having kids later, there’s also, you’re starting your family later, but then that means your parents are much older. And so you might be sandwiched more. So that means you might be in the middle of your career and also have, have children, little kids and aging parents that you need to help out. And, this is back to the workplace policies around accommodating family caregivers and creating more space for that. I think, recently there’s been more in the news about the toll of the pandemic on women, and the compromises women have had to make during the pandemic because of childcare, and because of elder care. And so, I have a good friend, MJ Grant who cares for her mom with dementia. Who’s also deaf and MJ is a sign language interpreter. So MJ has to move around her house because she has less access to formal caregivers for her mom. Also because her mom is deaf, she needs a formal caregiver who can sign. And so, then MJ has to have, do her zoom meetings around the house in special places, so her mom can see her because her mom can’t hear her. Her mom is also losing vision in one eye. So it, her peripheral vision is off. So it’s very complicated for them, but she, and MJ has a six-year-old, and and mom with dementia, who’s deaf from childhood. So she, MJ signs. The mom’s signs and it’s very complicated but the COVID and the resources during COVID are doing her no favors, of course. So she’s really had to manage no, no school for her child, because that would create more risk for the mom. Because they all live in the same home. And so it’s really complicated on women, especially it’s really pressed and squeezed women, especially.

Hanh: 15:05
I echo that. Yeah. It’s, there’s so much that still needs to be done, and I’m glad that you and I are putting ourselves and the message out there, so more folks can chime in and just underscore the importance of it. So thank you.

Regina: 15:20
I will say that, back to your point about caregivers being the backbone of society, I totally agree. And one of the challenges that we’re highlighting too, there is a lot of recognition for parents, while there might not be enough support for parents, especially during COVID there’s recognition. You know, children are celebrated and there’s hope and there’s energy and, it’s a different conversation than when we’re talking about caring for aging parents, with illness or caring for aging parents at the end of their life, there’s less emotional support and energy around. “Tell us how things are going.” there’s, more, it’s easier to talk about, “Tell us how things are going parenting during the pandemic.” People are less likely to ask a caregiver, “Tell us how things are going, caring for your mom with dementia during the pandemic.” It’s a silent, it’s a conversation that’s not happening so readily. And so then caregivers are again, being dismissed, disregarded, unheard, unseen, invisible. They call caregivers the invisible patient. It’s it’s again, just reinforcing this idea that caregivers already experienced that I don’t matter, that my role doesn’t matter in society. So this, what you’re saying Hanh about caregivers being the backbone, and we need, and often we don’t remember that we have our backbone. we don’t remember that we have our backbone. We don’t see it. We don’t see it. It’s just, they’re holding us up. And that’s the same, the truth. unless it’s injured, you don’t know that it’s there. You take it for granted and the same is true. And so, I like that expression, that the caregivers are the backbone.

Hanh: 16:49
Yeah. On a personal level, you know, your loved ones may maybe even scrutinized if they’re not doing a good enough job. If you’re caring for, let’s say mom or dad, grandma, grandpa, grandma, for whatever reason, that your loved ones are not doing well, sometimes families may be scrutinizing the person that’s caring, you know?

Regina: 17:09
Yes. Yeah. And it’s easier from the outside looking in to see all the things that need to change. I can tell my husband, he hasn’t done enough in the house and then he’ll remind me “Actually I did all these things, but I didn’t see it.” The same is true for caregivers. So if you’re a caregiver, who’s a primary. So, typically in families, there’s a primary caregiver and there might be ancillary caregivers, helpers. And, but if it’s the helpers or other family members have a thought about how caregiving should be done or a fantasy about how caregiving should be done and then compare it to how caregiving is actually being done in the pandemic with impossible decisions that you have to make, you know it’s not a fair Interpretation of what’s actually happening. And it, that also causes a lot of distress. And if there’s not family harmony around the caregiving situation, that causes a lot of stress and distress.

Hanh: 18:03
Yeah, I’m right there with you. Okay. So now, I want to dive into what you’re passionate about, which is the caregiver’s journey. and the six stages that come with that. So can you walk us through those six stages?

Regina: 18:27
Sure. Yeah. As I mentioned earlier, caregiving happens in the context of a relationship, and so these stages are actually stages for the relationship. And the caregiver in the context of that relationship. So, it will include role changes and conflicts, internal conflicts that often come up that have to do with these role changes and the illness that you might be caring for as well. So the first stage in the caregiver’s journey is called the pre caregiving stage. And this is before your loved one needs any care before there’s like an illness, that’s pretty noticeable at all. But this is where, and I’m talking about adult caregiving and older adult caregiving. That’s my area of expertise is caregiving. Older adults who are nearing the end of their life, or have a significant illness, like a life altering illness, like a terminal cancer or a dementia disorder. And, in this early caregiving stage, this is where there are just two mutual adults, the care giver to be, and the care recipient to be, or just two mutual autonomous adults. And, at this stage, you’re just going about life. You’ve probably lived separately. If you’re an adult child caring for an aging parent, you may have lived separately from your older loved one for decades .And really, the, this stage here is really important for the journey, because what happens is the quality of our relationship before we start caregiving can sometimes create a, roadmap for what caregiving might look like. So, for example, If you lived in a family that had a really hard time managing conflict and was very private and secretive about medical or mental health needs in the family, and didn’t talk about things, you might not have all the information as you go along the caregiver’s journey, right? If you grew up, if you have a family where there a lot of deception and betrayal, you might not trust the information that you get. If you are in a family where there was a long period of estrangement, or you were mistreated by your loved one who you’ll be caring for, you might have a lot of resentments and anger right? Along the journey. And so, understanding your relationship before you even start caregiving is why pre caregiving is so important. How healthy are you at in your relationship at baseline? And so, the struggle here is, what all families have their dynamics. Is your, are your family dynamics functional or dysfunctional? Are they healthy or not so healthy? And so the goal in this stage is to really make sure that you are as healthy as you can be mentally, physically, emotionally, socially in your own relationships. And, if you anticipate that you might be a caregiver for somebody, that you also foster health in that relationship, and you can do that by just having discussions or building connections. And, so that’s the first stage, this pre caregiving stage, and it’s called the mutually autonomous stage, just two adults going about their life. And, the second stage is called the early caregiving stage. And this is what I call the “Ambiguous Caregiver.” And, this is what we talked about a few minutes ago, Hanh, where um, “Now I’m caregiving now I’m not. Now I’m helping. Now I’m not”, you’re in and out of this caregiving role. You’re not fully clear. “Is this an illness?” Especially with the dementia disorder, it can be really hard to understand if it’s dementia early on, you just noticed some behaviors and you wonder, “Is this normal? Is this not normal?” And so you’ll see a caregiver in this early caregiving stage, this ambiguous caregiving stage, just say, “I’m not a caregiver. Am I?” And so, they don’t know. There’s a lot of confusion. There’s a confusion about their role, “Am I a caregiver? Am I not? Am I helping? How much do I help? Am I helping too much here? Should I back off? Uh oh, if I back up, too much, they’re gonna get hurt. Should we take away the keys? If we take away the keys, they’re gonna to the car, they’re going to be isolated. They live in a rural area and they’re not going to be able to get around. If we let them keep driving, we worry there’s going to be an accident.” And so, there’s a lot of “How much do we step in? How much do we back off?”

Hanh: 22:47
Oh, I’m sorry. And I noticed, as you were making the decisions for your loved ones, you have to be very mindful because not only is there a safety at hand, but also the sibling dynamics. You could easily get scrutinized, if you make the wrong decision and that’s heavy because you want to keep that family dynamics unify, right? As much as possible, very difficult to do. I’m sorry. Go ahead.

Regina: 23:12
Very, very difficult. In a second, I’ll give you a metaphor for that. But yes, the back to that family harmony piece, it’s so tough. The, in this stage, so, there’s a lot of confusion about the role. “How much should I step in? How much should I back away?” And a lot of confusion about the illness. “Is this an illness? Is this normal? Is this an illness that, will, can get corrected? Is this an illness that’s going to get worse?” And so, this, where you might hear caregivers say, especially with a dementia disorder, they might say “It’s hard to know where the personality ends and the dementia begins.”, or “Yesterday she could do this all on her own and today she needs my help. She’s so manipulative”, or “She could do it if she wanted to, she’s just faking it today.”, or. And so, there’s a lot of confusion, and these are like, typical. This is it’s this common. So, if you’re say, if you’re thinking these things, you’re not a bad person. You’re trying to make sense of this. “Is this illness? Is this not? Am I a caregiver? Am I not?” That’s why it’s ambiguous. And that’s the struggle in this stage. So the goal in this stage is that you gain clarity about the illness. And it’s, and its trajectory, what it will look like going forward, and that you also gained clarity about your role, and your point that you work toward family harmony, if you can. And so, in the early, or in the pre caregiving stage where it looks at your family dynamics, how well are you all communicating? If your family dynamics are already, at this, or somebody in the family tends to be more scrutinizing, or judgmental, or harsh, or critical, that might get amplified when there’s a sick person in the family. Because, so there, if you can imagine a mobile that like hangs from the ceiling over… We put them over cribs to stimulate the baby. But there are some beautiful artistic mobiles that hang from, artistic structures. And when somebody in the family and that’s like a representative of a family, even a dysfunctional family will find its balance hanging there. So when somebody’s sick, it tips the balance. And then the family is off-kilter even adult and older adult families can get off kilter when somebody is sick. “Oh, I don’t want to take on that caregiving responsibility. I don’t have that kind of a relationship with my loved one. You do it.” And so the balance gets tipped. And when the balance is tipped and families, and for individuals living in the families, it’s really chaotic and distressing. And, families will fight to rebalance it. And so, we actually put our old way of doing things. We try to put them in, into these caregiving stages, but it doesn’t fit. So it’s like putting a square in a circle hole. It doesn’t fit anymore because the person is sick. It’s not going to work the way you communicate it as a family is not going to work anymore because now the conversation has changed to something else though. The dynamics like a hyper-critical sibling or hypercritical parent, or if you’re a self-critical, that might get magnified. And that’s why health is so important, all along this journey, but especially before you even start caregiving, health for yourself and for your, if there’s harmony in the family. So, the third stage then, so we’ve done pre caregiving, early caregiving, which is that ambiguous caregiver. The third stage is “Yes, I’m a caregiver. The third stage is “Yes, I’m a caregiver. There is no denying it. I have to be there.” There’s, “I’m a caregiver, that’s it.” And so, in this stage it’s pretty clear that your loved one needs assistance, and that their functioning has declined significantly. And so, maybe they need help with toileting. Maybe they need help with bathing. Maybe they need help with other tasks. if they have a dementia disorder, maybe they need help with all tasks. Um, activities of daily living and instrumental activities of daily, like all the tasks need assistance in this stage. And this is to your point, Hanh, early on, where you were asking “What about when people become really overwhelmed?” Like the care needs are too high for one person, and that’s really common in this stage. And that’s where caregivers actually, in this stage, will start asking for help because they actually see “I’m a caregiver. I need help here.” And that’s when you will see caregivers actually start to look for resources because they understand that their role is caregiver and they need resources to help them with this. And so, having some reinforcements, like, I like to see, uh, think of this as a circle of support. So, you have your loved one in the middle and then the circle of support around them. So it’s not all on you. And then, at that circle around might be friends and family or, professional caregivers and then beyond with like adult day programs and other sorts of maybe the medical system, and Alzheimer’s Association, or Cancer Societies, things like that. And, in this stage, it’s really important because overwhelm is so high because the care needs can be so high. It’s so important for caregivers to get help and broaden the circle of support. But, also to attend to how meaningful the role that they are in is, and are they, the caregiver herself, actually valuing this role and the magnitude of what they’re doing and the meaning that it’s bringing to them and their family. And so, to really take stock of how important this is. Like, Hanh, you were talking about this as the, care, caregivers have an essential role, and it sounds like you were having your own experience right? With this personally, And, you know, with, if without your support or assistance, things would fall apart. There would be no structure or backbone to hold the whole mobile up. It would crumble. And so, this is, it’s so important for caregivers in this stage to reflect on how meaningful this role, actually is, and the magnitude of what you’re doing. Of course, all along in all these stages self-care is essential. That’s a given. We have to be our healthiest selves because we need to be flexible and mindful and curious and receptive, And perceptive. We have to be all the things. And it’s hard to do that if we’re not taking care of ourselves. So, I’m giving lots and lots of information with the stages. Should I pause for a minute or keep going?

Hanh: 29:31
No keep going. I think it’s great. I think everyone needs to know the depth of the six steps or the six components I think it’s very important.

Regina: 29:39
Okay. So yeah. So, this middle stage, this is where, if people out here are, um, familiar with instrumental activities of daily living and activities of daily living, this third stage, where the, you’re in middle caregiving or you are indeed, “I am a caregiver.” The person pretty well needs like full care or full attention. If it’s dementia, they might need 24 seven care. If it’s another sort of illness, they might need assistance. Maybe you have to use a urinal, a handheld urinal because the fall risk is too great out of the bed. And, you couldn’t leave them alone for long because of falls or whatever it is. And so, in this stage I, I pretty well discussed this stage. So, then we move into the, uh fourth stage, which is moving toward end of life, and moving toward death. And this is the stage I call “The Steward Stage”, and this is because you are the steward for your loved one’s wishes. You’re carrying the relationship. it’s likely at this stage, your loved one is not able to communicate with you so well, whatever the illness. It’s likely that you are holding the light that will guide. I see the steward as light house storm. So your loved one is going through their transition and you have to be this, um confident rooted structure, a steward, And you’re carrying the weight of the relationship, the weight of the end of life wishes, you’re communicating for your loved one, you’re advocating. And, this is really, while early on in the second stage that ambiguous caregiving stage, it’s very frenetic. There’s like a lot of moving pieces and it’s chaotic and you’re just need some order. And, this stage it to me in my mind, it’s somber. It’s quieter. And, you, and will have a different emotional, it’s still emotionally intense, but a different emotional quality because you’re grieving. There’s an anticipatory grief happening. You see the end is coming. And you might reflect on your experiences as a caregiver in your time with your loved one and your loved one, and, you’ll, you might be communicating more with your family to let them know how things are going. Hospice might be involved. They might be asking you all the questions and not including your loved one anymore. And so, this is the steward role here. And, the goal in this stage is, earlier on in the caregiving journey, the goal is to help optimize your loved one’s life and not lose yourself in the process, right? You want to help your loved one, live their healthiest life, even in the midst of illness or their optimal life, even in the midst of illness, and do it with dignity and respect and not lose yourself. And then at this stage, though, you’re working toward an optimal death. So it’s like you’ve come full across the full spectrum, of, from life to death. And so, you’re really the goal here is to work toward optimal, healthy end of life and healthy transition and death, which is very different from the beginning and very different emotionally for the primary caregiver. And so, you’ll be taking stock of your relationship of your family relationships in a different kind of uh, way. So the goal is to prepare for a healthy end of life and an optimal end of life. The fifth stage is now, as the caregiver, you’re grieving, it’s the bereavement stage. And so you, your loved one has passed and you are grieving. Now, the complexity that can come in for primary caregivers here is that sometimes what happens, the primary caregiver might not be the executor of the will. There, there might be two different people. And so, the family dynamic, back to that mobile and my, you know, tip the other way. And the primary caregiver might get a backseat to the executive planning or the the will and estate planning because you might not be assigned to that person. And that can also, you can feel dethroned a little bit, or less important when like, for 10 years you’ve had the primary role and, all of a sudden you’re Your seat has been taken away. And so, that, that can cause a lot of internal conflict for the primary caregiver and a lot of conflict in the family. And so, the goal here is to try to work toward family harmony and and also your own bereavement process. Okay. Are you ready for the six goal? Yeah? Okay. So, the sixth goal is the final goal. So you’re, it’s stuck with me, and the sixth goal is the rebuilding stage. And this is where you are no longer a caregiver, and there is a vacancy now. Because, if I were to ask you to create a pie chart of all of your roles in the second and third stages, you might have been a mother, or, a spouse, a caregiver, a business owner, all these things. And when you get to the very end, say you’re a spouse and your partner dies. I worked with a woman who asked me, what, “When do I take my wedding ring off?”

Hanh: 34:42

Regina: 34:43
As the marker of this transition. Right. And so, when you get to the end, you might have pieces of your role map, like a pie, like a if you were to create a pie chart of all of your roles, she had caregiver and spouse gone. And so, that was a lot of vacancy for her on her pie chart of “What do I do now? I’m no longer a spouse. I’m no longer a caregiver. I might not be working anymore. Maybe I left my job to care, full-time, for my loved one. And ha, and so I might have all this vacancy, so What now?” And so, the stress. And it can be very lonely. I, one was that example of “When do I take my wedding ring off?” Another, uh, a woman who had been caring for her loved one with dementia for 15 years was saying to me, “It’s so quiet at four o’clock in the afternoon. This is the time that I would go visit him.” And so, there’s all this space. And so, “What do I do with this space?” So, there’s a lot of grieving, and rebuilding, and what the goal here is to rebuild with purpose. So, what purposeful, meaningful things do you want in your life? What roles do you want in your life now? And that’s the rebuilding and recovery stage, and those are the six stages.

Hanh: 35:55
Wow. Wow. Gosh, thank you for that. And, what is the name of the book that you have that covers the six stages?

Regina: 36:03
Yeah. So this is based in a family systems therapy model. So, there’s a therapy called “Caregiving, a Family Therapy”, and that it talks about the roles in these transitions. I think it was originally, this stage model was originally developed by Pfeiffer in 1999 as uh, I think it was a family therapist. There is a psychologist, Sarah Qualls who wrote “The Caregiving Family Therapy Book.”, and then I added my own names to some of these stages. There’s another , um, “Caregiver’s Journey, Six Stages Model”, I think from Denise Brown, that’s different than this model. It’s also interesting. she talks about stages a little bit differently than I do, but but also pretty intriguing, actually.

Hanh: 36:47
Now, the links that you provide, I’ll include that in the show notes. And that’s referenced back to the the six stages that you described just now. I want to make sure I have the right links when I put this.

Regina: 36:58
Sure. Yeah. know, I’ve been doing family therapy for 20 years, in, in a systems framework. One of the godfathers of family system psychotherapies, name is Minutian and he talks a lot about these family structures and imbalances and role transitions and role changes. And that’s part of what this model is based in is in this family systems model. There’s also an, a family medical model or medical therapy where you’re adjusting to illness. There’s also the bio-psycho-social piece where you’re adjusting to your own health and wellness from a psychological, physical, spiritual, and social perspective. That’s really essential for self care and other care. And then, and so, it incorporates these various theories and psychological theory, and psychotherapy.

Hanh: 37:52
Great. Great. Okay. So, I’m going to ask you a couple of questions, that’s around mental health. So now, what are some of the things that a person can do to maintain their mental health as they age? And also, are these things people should start doing at any age, whether you’re thirties, forties, or fifties, regardless of the age?

Regina: 38:10
I totally agree. I’m glad you’re asking because I’m a clinical psychologist. So, I work with people around mental health all the time and especially older adults. So, I, my practice is with older adults. Exactly what you said these recommendations will help at any age. So, one is physical activity and exercise, and these are great for mental health and also for reducing risks for dementia. So, that’s, these are important for both. And there are some neuroscientists that are looking now that something like 30% of dementia can be prevented by lifestyle changes. And also the way we think about aging also affects our development of something, even like an Alzheimer’s disease, even if we have the gene for Alzheimer’s, just the way we think about aging. If we have a positive view of aging and we internalize that and really believe that, it actually can shift our, um if we convert to having a dementia disorder and, and how quickly we develop dementia. So, this is all really important. So, what we can do. Healthy, maintaining physical activity with your doctor’s consent. But so, some sort of physical activity that is approved by your doctor, especially if you’re living with some medical conditions or limitations, healthy diet, and proper nutrition. And what’s really important are social relationships. So, that is key. There was actually a nun study that looked at women, nuns who were in a convent and they looked at their brains after. And some of these women had pretty advanced stages of dementia, but it, didn’t, wasn’t. It didn’t show they weren’t as symptomatic. And the thought yeah. Is because they were so socially engaged in the convent, they were so connected and united, and had a role and a purpose in the convent. So, having social interactions is incredibly important for our mental health. Older adults are actually great at that. So, the people who actually have the highest rates of loneliness, are 18 to 24 year olds. Older adults, while we are concerned, there is concern about social isolation and loneliness among older adults. The people at most risk are young adults. And that’s, older adults have really high resilience rates, so that’s really important to know as well. But the other piece is also, there’s a lot of information and research now on mindfulness and aging and how important mindfulness and self-compassion are. And so, I had a podcast where I talked about resilience and aging during the COVID pandemic, and what research has found is that actually older adults, have higher rates of wisdom and the feature of wisdom that older adults possess the most is compassion and self-compassion is actually been key to resilience during the pandemic. So, that’s pretty, pretty remarkable. So older adults actually can teach us a lot about how to get through this pandemic.

Hanh: 40:58
Exactly, you know what you just said, older adults, and then all the benefits that comes with older adults. Why is there such a stereotype being older, so bad? You just described older adults have all these, and I agree with you 200% and it’s a shame that not enough folks in society perceive it that way. And it’s still a stereotyped to be frowned upon because they’re anti-aging, right? They’re so pro Hollywood and just don’t give enough regard to the older generation. So, I’m with you.

Regina: 41:30
And research is with us, Hanh. The, when we have a negative view of aging and when we reinforce negative views of aging, it increases rates of mental health conditions and increases rates of medical conditions, major medical conditions. There’s something like, it costs the US every age-ism cost, the US every year, something like $63 billion. And that even shifting our view of age and aging and shifting it to more positive, you can save us, 1.7 million or billion I can’t remember exactly. I just did a presentation on this to 500 health providers within the VA system nationally last week. And, but it would save us like, it would reduce the incidents of illness by like 1.7 million or billion. I can’t remember, in one year. I mean it’s, it has, and it’s actually, age-ism is a pandemic. And of course COVID is a pandemic and age-ism, and COVID are both disproportionately affecting older adults, and we can do something about agesim. We don’t need a vaccine for that. We can shift, like you’re doing here and we’re giving more information, but we can shift the way we think about aging, and the value we place on aging and media and Hollywood have something to do with that too.

Hanh: 42:47
Enough about people talking about ageism. I think it’s great to put it in the forefront, but I think it’s more important that we be a part of that shift. Like what you and I are doing right now. So, I’m more geared towards taking action, educating, informing, putting it out there and just take action and be a part of that shift. So, I think it’s very important. So, I think it’s very important. So, would you say that external factors like society or community events or internal factors like your own attitude in a sense of life purpose, which has a bigger impact on mental health, older adults?

Regina: 43:33
I don’t know that I could tease apart, which is more significant or which is more influential. They’re both influential. So, there are structural and societal, there’s structural and societal age-ism. And then there’s, what’s called the “Stereotype Embodiment Theory”, which is internalized ageism, both contribute to mental health. And aging and physical health. I need to say that again, because, there we focus on mental health, which is I’m a psychologist, that’s my jam. But the other piece is that this affects physical health too. It affects rates of dementia. It affects cardiovascular disease. It affects mental health conditions. It affects cancer. It affects all sorts of physical health conditions and all sorts of mental health conditions. So, Barriers, one is that we have a misconception about what’s common with aging because of, messages we’ve been fed about aging. There’s a common misconception that dementia is normal with aging, when it’s not. There’s a common misconception that depression, at some point don’t, we all become depressed, and everybody’s dying around us. We’re all going to move. Isn’t this depressing? And then, so we have this misconception that at some point we’re going to be depressed. And also, we have these ideas about older adults that “Well, old dogs can’t learn new tricks. Older adults will never change.” So, they are never going to go to mental health care. But here’s the thing with depression is highly treatable among older adults. So it’s not normal with aging, but it’s the most prevalent mental health condition. And it’s highly responsive to treatment and older adults benefit from treatment at the same level that younger adults benefit from treatment. And so, if we believe it’s normal, we’re not going to advocate for our loved ones, when we see some depressive signs, we’re not going to advocate for them to get mental health care. Because we’re going to think it’s normal. Why would they need mental health care for that when it’s not normal? And when older adults don’t get mental health care that they need their rates of illness go up, they use more medications, they have more, ER, visits. It takes longer to actually leave the hospital when they are medically hospitalized. And it increases the risk for suicide, which is higher among older white men, over 85 its the highest rate of suicide is among older white men. And so, if we believe it’s normal, we’re not going to get our loved ones help. But, we need to know depression is not normal with aging and it’s highly treatable for older adults and other mental health conditions as well.

Hanh: 45:58
I always think to myself, we had to be very mindful of what we do to the parents and grandparents and the aging population folks turning 65 plus. 10,000 a day for the several decades. We have to be very mindful in how we spearhead in serving those older adults, because guess what? We’re on a way to be there and it sets the stage for how our children to care for us. We’re on a way to be there and it sets the stage for how our children to care for us. So be very mindful. I keep, always remind myself and remind my colleagues. I think it’s very important.

Regina: 46:29
We’re all aspiring to be older adults. None of us are saying I want to die young. That’s a tragedy. We all want to die after a hundred years old, we’re all aspiring to be older adults. It’s yes. To your point. The internalized stereotypes, so the “Stereotype Embodiment Threat” that I talked about, or theory. So, this is when we hear stereotypes and we internalize them and we believe them. And so, this when older adults have uh, negative beliefs about aging or believe negative stereotypes, their rates of depression are higher. Their rates of suicidality are higher. Anxiety is higher, and their belief around treatment, is lower. Also, there’s some research that shows that when we believe negative stereotypes about aging, when we are indeed older ourselves, we are less likely to engage in, um, we’ll have lower will to live. For example, we might be less likely to take our medications and it affects our behaviors, and in terms of how we’re caring for ourselves as we age. “Oh, I’m just a burden.” We dismiss our contributions to the family or to the world when we have an illness and we’re older, if we believe these negative ideas. And so, that’s the threat of internalizing this, age-ism. It actually, and that’s how it plays out that you would have higher rate of dementia or faster progression of dementia, if you believe these negative things, or have more depression, “I’m not going to take medication for depression because I’m not going to get better anyway, cause I’m old.” I mean that’s a negative belief around aging and it’s also not true, but if you believe it, that’s going to affect how you respond to your own care. And so, that’s the threat and the risk of these ageist ideas and how it plays out in medical care and in mental health care.

Hanh: 48:16
Yeah these are very good points and I hope the listeners just take it on own it and make an impact on, let’s say their parents and grandparents, but you know, also for themselves, right? Because in my mind, aging is a gift we’re still breathing, we’re living, and it is our choice how we want to live, but it’s a gift. And along the way, you know, live to the fullest. Be impactful. especially, during this tragic time, when you hear, deaths of, from COVID. And I think what, one of the things that has taught me is, and you just got to live beyond your fears, right? When we’re fearful, um of what’s going on and how we’re all impacted by this. For me, it’s just impacted me to recognize the unknown, the fears, but you have to live above it. So,

Regina: 49:05

Hanh: 49:05
that’s my take.

Regina: 49:06
And persevere. Yeah. And that you have something to offer the other, I think that the, um your point to living. Moving through the fear and living a well and optimally and enjoying your life is so important because that leaves a legacy that teaches and reshapes the age-ism that you are passing down, to your lineage and your legacy. And it’s so important that message has shifted that older adults also shift that message. Older adults internalize this age-ism younger adults internalize this. Age-ism, actually some research that shows that like at age 30, if we have negative age stereotypes, beliefs, that we’re more likely to have a cardiovascular event, by age 60. it’s remarkable, some of the research out there.

Hanh: 49:54
I thank you so much, just making this time and connecting with me and sharing your passion. It sounds like you’re doing some great work and let’s keep that conversation and that message alive, for many years to come.

Regina: 50:07
Yes, for the work that we are doing to share and shift the message around positive aging and healthy aging, hopeful aging it’s so, it’s so important.

Hanh: 50:19
I got to tell you everything that you’re talking about. I wish I had eight years ago, right? Because it is a very lonely journey when you don’t know about it. And yeah. Yeah. Very lonely. Because like you say, most people didn’t even know that there was, they’re playing the role of a caregiver because often it’s it’s a role of a daughter that you fulfill, it’s an honor its a privilege and it is something that you were raised to do. And my older siblings, I think carry the weight heavier because they’re older. I come from a big family, but still it’s something that needs to be in the forefront that you’re on this journey ahead, and these are some resources that can help you. And I think mostly continue to embrace of that journey. And that’s very hard to do. That’s a big word, but if you can come to the place where you can accept and adapt and embrace. What a blessing.

Regina: 51:14
Oh, and to find a new type of connection with your loved one. I, um, I really am terrified when I, the time comes that I have to care for my mom. I’m the only, I have four brothers, I’m the only daughter. And, and actually I’m not the closest with my mom. My brother, one of my brothers is much closer with her and would be a better caregiver to her than I would be, or my mom and I have had a strained relationship in my, in our life, over our life. And then I think, then there’s a piece of me that thinks wow, what if we find? And my mom and I have been working on our relationship, but there’s a piece of me that thinks like what if we find, finally it’s something like, I have this hope in me that like at the end, what if we have enough grace for each other and enough compassion for each other, that we have a new kind of deep connection or loving connection that we weren’t ever able to find before. Like how beautiful and special. So, like, I’m terrified. And then equally I’m thinking like, gosh, I wonder if it would be rich and meaningful and a new kind of way that I don’t even know about.

Hanh: 52:15
Yeah. It’s the healing process sometimes time heals. I also think going thru a difficult times perhaps helps the healing process, which I don’t like, but I think life has shown me otherwise.

Regina: 52:28
During COVID, I have a lot more respect for my mom than I did. My mom is a single mom of five kids.

Hanh: 52:34

Regina: 52:35
I’m a married mom of two little kids with many more resources than my mom had. And I am like, I have so much more compassion and grace for her now. That’s like maturity and life experience and just perspective as a parent. I have so much more, having been through it myself now, just respect and admiration for, what, and my mom lived with a severe mental illness that I don’t live with. And so, just what she was able to do. I have so much more respect and admiration for.

Hanh: 53:05
Isn’t that something that all saying “You don’t understand, you don’t appreciate until you become a parent.”, Isn’t that there truth? I’m with you. I mean I’m the youngest of 10, and my mom is in her nineties. Yeah. It’s a lot of people talk about family dynamics and coming to…

Regina: 53:19
Oh my GOD, the harmony.

Hanh: 53:20
Yeah. Harmony slash disharmony at moments. It’s, it’s, it’s, I don’t even where to begin. it’s, it’s, um, it’s a blessing and it’s a life journey. I’m at a loss because I totally don’t know where to begin. Cause that’s like a whole different topic, but I know, oh, we’re talking about appreciation of your parents. Un, until you, when you become a parent and I’m right there. my mom and dad have 10. I have three. Often I’m thinking like, “What are you complaining about?”, especially during the teenage years. And now, they’re older. My daughter is going to go to medical school and then my son is a senior in college and I have a baby. Yeah. He’s 18 years old. So, I’m going to be a near empty-nester.

Regina: 54:02
You’re about to launch.

Hanh: 54:03
Yeah. And, it’s a different place in life and we’re sorting out, and trying to navigate how to strengthen that phase because let’s face it, we go through life, a big chunk of that has been very task oriented, where we take care of the kids and their activities and their school and sports and college. And, so I’m hoping there’s a sense of relief. I’m hoping that I’ll find my purpose.

Regina: 54:32
Yeah, a lot of new beginnings for you and your family.

Hanh: 54:36
Well, I thank you for your time.

Regina: 54:37
Yeah, thanks so much for having me Han and for the thoughtful questions. Well, thank you for this opportunity. I really appreciate it.

Hanh: 54:44
You take care.

Regina: 54:45
You too. Bye.

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