Clarifying Perspectives in Navigating Caregiving with Aaron Blight

This episode delves into the often challenging and transformative journey of caregiving, featuring Aaron Blight, founder of Caregiving Kinetics and an internationally renowned consultant on caregiving, aging, and healthcare. Aaron Blight, recognized as one of the top 100 healthcare leaders, shares his personal journey into caregiving following a sudden need to care for a loved one, highlighting the profound impact it had on his family's life and career. He walks us through the emotional and operational aspects of caregiving while offering us insights and perspectives along the way, including how role changes within the family affect us, offering strategies for dealing with other family members that “try to offer helpful suggestions” about how you could do it better, the importance of outside support and resources, and how to ask for them. With insights on how to better navigate caregiving roles and offer meaningful support to caregivers, this episode is a valuable resource for anyone who is or will be involved in caregiving roles. Which is…pretty much all of us at one point or another. Join us and let’s learn how to do it with more understanding and and even a little grace.

For his blog, speaking information, and follow up information: https://caregivingkinetics.com/

To check out Dr Blight’s book, click here: https://caregivingkinetics.com/get-the-book-when-caregiving-calls/

00:00 Introduction to Caregiving: A Personal and Professional Journey

04:19 Dr. Aaron Blight's Personal Story of Transformation Through Caregiving

09:41 Understanding Family Caregiver Identity Theory

15:34 Navigating Role Reversals and Emotional Challenges in Caregiving

20:15 Strategies for Managing Caregiver Stress and Role Conflict

29:59 Validating and Supporting Caregivers

31:42 The Power of Specific Help Offers

34:13 Navigating Family Dynamics in Caregiving

37:09 Involving the Care Receiver in Decision Making

42:31 Addressing Concerns as a Non-Primary Caregiver

45:45 The Ripple Effect of Love in Caregiving

52:44 Reflections and Takeaways on Caregiving

Transcript

0:00

Hello and welcome to the What Really Makes a Difference podcast. I'm your host, Dr. Becca Whittaker. I've been a doctor of natural health care for over 20 years and a professional speaker on health and vitality, but everything I thought I knew about health was tested when my own health hit a landslide and I became a very sick patient. I've learned that showing up for our own health and vitality is a step by step journey that we take for the rest of our lives. And this podcast is about sharing some of the things that really make a difference on that journey with you. So grab your explorer's hat while we get ready to check out today's topic. My incredible guest network and I will be sharing some practical tools, current science and ancient wisdom that we all need, no matter what stage we are at in our health and vitality. I've already got my hat on and my hand out, so let's dive in and we can all start walking each other home. Oh, the strap in, because today we are talking about something you may not be thinking of yet, but you will be at at least one point in your life. I'm almost sure of it. Today we have Dr. Aaron blight with us, and he is the founder of caregiving kinetics. He was named as one of the top 100 health care leaders by the international forum on advancements in healthcare. And he's an international speaker and a consultant on caregiving. Aging and healthcare, why would I be so excited about this? It's because I've heard Aaron speak and he's a personal friend of mine. So we've had discussions about caregiving and it is true. What he says that most of us at one point in our life will either be caregivers for children, family members, loved ones or friends, or we will be caregiving for, and we will experience. The chaos that can be the role reversals or changing of rules. In that situation. Aaron shares vulnerably about what happened in his personal life. That let him know. There was a lot more to caregiving than he thought there was both personally and professionally, and he's made it a life goal of his to walk other people through the process so we can all do it better. He's worked on policy for caregiving, with Medicare and Medicaid. He teaches groups. He travels internationally to teach and to speak. And he's just a really great person on top of that. So without further ado, let's hear what Dr. Aaron blight has to say in this conversation.

Track 1: 2:36

Uh, Erin, I am so grateful that you are here to talk to us and, and help us make our way through something that we likely will all face in our lives. So thank you so much for coming on the show to help us understand how we can have more health and vitality, even when we're in situations we couldn't have planned for like caregiving for a loved one or receiving care ourselves. You are my favorite person to talk to about this. So thank you so much for joining in with us today.

squadcaster-f9ab_2_03-20-2024_130508: 3:04

Thank you, Becca. I'm really excited to be here with you. It's so good to see you.

Track 1: 3:09

Remind me again what state you live in.

squadcaster-f9ab_2_03-20-2024_130508: 3:11

I'm in Virginia.

Track 1: 3:12

Virginia. I knew it was somewhere pretty. That's where I logged it. So I met you when we were both going through training to be a professional speaker with

squadcaster-f9ab_2_03-20-2024_130508: 3:23

That's right. That's right.

Track 1: 3:25

And, that was terrifying and wonderful and exhilarating and anxiety producing experience.

squadcaster-f9ab_2_03-20-2024_130508: 3:32

It was. And you were, and you were fantastic. I remember. You were a standout Becca. Yeah.

Track 1: 3:38

Thank you. Thank you. I really do love that. I hope to get back to it at some point, but I remember yours. That was how I was introduced to your work because I had never thought of the truth that most of us will be called upon to care give at some point, little kids failing, failing health, you know, in parents or friends or spouses. And when you began to speak, I thought, wow, there's a whole world out here that I hadn't even thought about and that I think most people don't think about until they're tossed into it. And once you're tossed into it, you're just kind of swimming. I mean, there's the anxiety about the person that you're caring for. And I know a lot of people end up just taking care of that person and, and sort of stepping their life back. Yeah. But I take care of a lot of caregivers, like when they get a moment and they get to come in and they are thrashed human beings.

squadcaster-f9ab_2_03-20-2024_130508: 4:41

yeah.

Track 1: 4:42

So as you were speaking, you know, names and faces were coming into my mind of people that I wished I could share your speech with. So I'm grateful that you kept getting training and that you do. Go to speak to groups so that more people can hear this information because I think it's so valuable, Aaron. Thank you for what you do.

squadcaster-f9ab_2_03-20-2024_130508: 5:01

Well, thank you, Becca, that that means a lot to hear that from you. And you're right. Caregiving hits everyone at some point in time. And I think in my case, it just happened at a, at a relatively young age, at a time that I just did not expect it. And it really transformed my life. It, it changed our family. It, it ultimately changed the direction of my career.

Track 1: 5:25

Would you please tell me how you got into this? What happened at a young age and how did you decide to transmit that into teaching other people about caregiving?

squadcaster-f9ab_2_03-20-2024_130508: 5:37

Yeah, you know, Becca, I never envisioned myself as a caregiving expert or a caregiving speaker when I was young. But really what happened is I was 29 years old and my mother in law got an unexpected brain tumor diagnosis. And at the time I was actually working in the federal centers for Medicare and Medicaid services. I was in the Medicaid program. I was working in the disabled and elderly health programs group, writing national health care policy for elderly and disabled people, but I didn't really know anything about what it meant to be elderly or disabled. I was 29 and. Relatively healthy and we were raising our young family and my mother in law just out of the blue got a brain tumor diagnosis and they gave her weeks to live and they recommended immediate brain surgery. They said that if she survived the O. R. And if the surgery was successful, she might live six to nine months, best case scenario.

Track 1: 6:43

wow.

squadcaster-f9ab_2_03-20-2024_130508: 6:44

So the extent of our thinking here was, mom needs help, we're going to help her. Period. It was that simple. And she needed a place to stay after her brain surgery. So she moved into our home to recover. She survived the brain surgery. The brain surgery was successful and she went on to live five and a half years after that original diagnosis. So she was a miracle, but she went through radiation, chemotherapy, another brain surgery, all while she lived in our home. And so we were thrust into the family caregiving role. We were sandwich generation raising our young children and also trying to care for my mother in law at the same time. And it was very, Difficult. Very, very difficult for us. Somehow we made it through. But to be honest, Becca, I was a really lousy family caregiver at the time. And I had no idea what I was doing. I had no idea how profound this was going to affect us. And ultimately the cancer had gone into remission, but then, but she was in cognitive decline for the rest of her life. And so she needed help with daily tasks and things like that. And so we were always helping her. And after she passed away, the cancer actually returned and she opted not to, not to have any more treatments. She just let the cancer take its course. But after that because of the family caregiving experience, I left Medicaid and opened a home care company to help families like mine. We, we served thousands of people over the, the years there in the Northern Shenandoah Valley of Virginia, the Eastern Panhandle of West Virginia. And then I went back to school and got my doctoral degree and, and studied caregiving as a phenomenon of social science. And after selling my home care business this is what I do today. I, I wrote a book on caregiving and I speak to groups all over the world about caregiving. so for me, it's very much a a cause, a purpose. A passion. I know that family caregivers need help and support and I know what it's like to be floundering and unsure what to do. And so I'm just grateful that I have the chance to share these things.

Track 1: 9:09

Oh, You encapsulated that story so well. And I think, you know, I don't know, many of us know what we are getting into. If we're going to care, give someone, it's usually for that same reason. We know one thing, someone we love needs help, or someone doesn't have anyone else, or, you know, all the reasons that we go into, it's not like we already know what we're doing. And we like, put on our superhero suit and are always kind, always patient, always have the right answer suit. Right.

squadcaster-f9ab_2_03-20-2024_130508: 9:42

Yeah.

Track 1: 9:43

do that. So, so thank you for your vulnerability of, I did not know what I was doing. And just like so many things that are hard, I think it launches us into our life, like our real life, the things we're really here to do. If we follow the signs, really follow our impressions and our things we want to learn and the holes that we see in the system that we know need to be fixed. And if it's to be, then I'm going to step forward to help it out, kind of. That's what I hear from that story. And that's what I know a lot of people experience. So thank you for speaking to that. What are some of the main things that you wish you would have known going into that, that you maybe did one way that you thought was correct, that you now know with more education and more experience could have been causing more problems For her or for you or for the family. What are just some main things that you Thought were good that maybe aren't so good to do

squadcaster-f9ab_2_03-20-2024_130508: 10:47

Well, one thing, Becca, that I, I really, that really, really struck me that I learned and and that I share I talk about this in my book when caregiving calls guidance as you care for a parent, spouse or aging relative and I include this in some of my workshops across the country. And that's something called Family Caregiver Identity Theory. And it comes from a couple of applied gerontologists, Rhonda Montgomery and Carl Koslowski, who are both retired now. Actually, Carl Koslowski passed away. He had Parkinson's. But he was at the University of Nebraska Omaha. And Rhonda Montgomery was at the University of Wisconsin Milwaukee. And they spent about 28 years studying family caregivers. Some 20, 000 family caregiver dyads, dyads meaning the two, the caregiver and the care receiver, were the subject of their research. And I was exposed to their research in connection with my doctoral dissertation. And so when I was doing my literature review, I learned, I discovered their, their work and I was just kind of blown away by it, Becca, I couldn't, it was so intuitive and it also explained really why my wife and I had such a hard time. Being family caregivers, and it has to do with the changing of roles that occur over the course of a family caregiving. And so the way that I like to kind of talk about this is, you know, before caregiving enters your relationship, you have an established historic relationship with your loved one. And that could be. You know, mother, daughter, mother, son, husband, wife, grandchild, grandparent, whatever the case may be, your role in your relationship with that person has always been a family role, right? And let's just use the example of, let's say an adult daughter who's caring for her aging mother, right? That your role has always been daughter and that that role of daughter is, is loaded with meaning and it shapes how you interact with your mother and how you respond to your mother and how you think about your mother and how she thinks about you and the things that she says to you. And you know, even as adults, some of those childhood patterns. And scripts continue to, to play out, right?

Track 1: 13:37

oh yeah,

squadcaster-f9ab_2_03-20-2024_130508: 13:38

And if, if your mother as an, as an older person develops a health condition and requires assistance from you now you find yourself involved in, in tasks that are different than what you did before with her.

Track 1: 13:54

yeah

squadcaster-f9ab_2_03-20-2024_130508: 13:55

You're breaking away from that historic pattern, that historic relationship, and it's because of a health condition, and that health condition just rudely interrupts your historic relationship. You don't have any choice in this, and your mom needs help, and so as the tasks that you perform for your mother change, the way that you interact with your mother also changes. And so the way that you think about your mother changes, and the way that she thinks about you might change, and the way that she speaks to you might change, and the things that you do together will change. And so there's this emerging, encroaching role of caregiver that's entering into your relationship. And over time, With sufficient time and sufficient decline in health of your loved one, that role of caregiver has the potential to crowd out your historic familial role. And that can be incredibly distressing and difficult for people. And it was for me. And it was for my wife. You know, when I was 29, early 30s, I just wanted to be a son in law. I didn't want to be a caregiver for my mother in law. And my wife, she wanted to be a daughter. She didn't want to be her mother's caregiver. And yet that's what we were doing because the circumstances required it. And honestly, Becca, I never, ever adjusted to that caregiver role in that five and a half years. I kind of resented it. And, but at the same time. I wanted to help her. I love my mother in law, still do. She's was a wonderful person. She treated me like a son from the moment that she started, that I started dating her daughter. so I wanted to help her. I just resented the fact that she needed help.

Track 1: 15:48

Yeah.

squadcaster-f9ab_2_03-20-2024_130508: 15:49

And so I didn't understand. Why I was having so many, I have, I was having this just internal turmoil constantly over the course of caregiving for her. But once I learned about family caregiver identity theory which views family caregiving as a series of role based transitions that are precipitated. by the changing health conditions of the care receiver. Once I started learning about that and seeing it and visualizing it, I understood that was, that was really the essence of my challenge. And I share this with family caregivers all over, and I think it really resonates with them.

Track 1: 16:41

okay, like this anger I feel or this helplessness I feel or this time period that I feel like has been stolen from me is normal and How, how I can move through that a little better is to understand the dynamic is changing and learn to become present with the change and what that is. You know, when I was, when I had my, the heavy metal poisoning, the brain injury in my brain. I remember I was trying to figure out how to do insurance reimbursements. So we had like a health share. So you pay everything in cash and then you have to get diagnosis codes and other codes and send it back into the company. And then they eventually reimburse you if you do the paperwork. Right. But my brain was not working very well at all. Numbers were confusing. I was having a hard time speaking. And I couldn't remember. almost anything. So I remember my husband was at work and I, my mom came over to see if she could help me out in general with things. What we didn't know was that my mother was in cognitive decline. She was

squadcaster-f9ab_2_03-20-2024_130508: 17:51

Oh, my goodness.

Track 1: 17:51

really well. We now know that she has Parkinson's, but instead of having the shaking symptoms, which I knew to look for, she was having dementia symptoms, but she lived by herself. She's a very smart woman. She was masking them really well. But what happened is when we were on, when I was on the phone with insurance and I couldn't speak. So I went to like signal her with my eyes like, Oh, this is when my mom will save me here. Like she knows my email address. She knows my phone number. She can spell this out for them. Cause it's going to take me 10 minutes through the stutter to say all that. And she's got me. And she looked at me in panic. Okay. And I remember thinking, what is happening right now? And I looked down at her notes that she was trying to write for, for the person we were on the phone call with, for like how we, how we submit these things. And her writing was cramped and sideways. She's always had very beautiful handwriting. She was a secretary. She can write fast. And I looked down and I thought, that is, that is not the writing of my mother. And this is not. The way that she remembers, and this is not how she speaks. And she's looking at me with intense anxiety. Like I've just caught her in something. Like she was looking back at me like a child. And I felt that role reverse. But that was really tricky because neither of us could do what needed to be done. It was the blind leading the blind. But when you talk about that, I remember that moment. And there's been, you know, many moments since. Now we understand more what's happening, so we know how to help her. And it's been really clarifying. But there's been a lot of times where the roles have switched and it was not something we were very prepared for. you know, how much care they do need help with how far that role has switched. If they are more like a child today, if they're more like a teenager today, or if they are your mother today, that can be really tricky.

squadcaster-f9ab_2_03-20-2024_130508: 19:50

Definitely.

Track 1: 19:51

that?

squadcaster-f9ab_2_03-20-2024_130508: 19:52

Well, so first, I just, I was thinking as you were sharing that story with your mother that she was probably seeing you in your health condition and your needs and trying to be strong for you and trying to be there for you and trying to be your mom and supportive and, you know, she always probably handled things and protected you and looked out for you and suddenly In this really rather dramatic way, it's, it's revealed that she, she's not who she used to be. And she, she can't do this for you. And, and I would imagine that was very hard for her and kind of, and, and really unnerving for you as well.

Track 1: 20:37

We both were just looking at each other and thinking, I don't know. I don't know what we do right now. I finally took over and just in a very distinct stutter tried to spell out my email address. And then when we got off the phone, I looked at her and said, Mom, what's going on? What's happening with your handwriting? What's going on? And, and, you know, that started honest conversations, but yeah, thank you for. Thank you for holding that moment with me.

squadcaster-f9ab_2_03-20-2024_130508: 21:12

Yeah, well, you know,

Track 1: 21:13

those things are switching around, how do you, how do you, how do you work with, with your own emotions and theirs

squadcaster-f9ab_2_03-20-2024_130508: 21:21

well, I think a couple of things that I would say about that back. 1 question is as you look at yourself in this relationship with your loved one who needs care. How much of a disconnect is there between what you are currently doing and what you think you should be doing and in the relationship and the greater distance, the greater difference there is, the greater gap there is between what you actually are doing In terms of caregiving tasks and what you think you should be doing in the relationship. The greater internal conflict that you're going to have about this whole caregiving thing. And you need, if you're finding yourself in this state of kind of cognitive dissonance, where you're like, I'm doing all this stuff for my loved one. I don't want to be doing it. You know, if you find yourself depressed or anxious or guilt ridden then you need to do something to try to address that. And I often encourage family caregivers to seek help professional help, help with, from mental health counselors or therapists or social workers or pastoral counselors, or even just a good friend. Can really be meaningful. But ultimately there I talk about three different ways that a family caregiver might resolve this internal conflict that they're feeling. One is by. Redefining the role that you have in the relationship. And so you can either say to yourself, you know, I've always been a son to, to my father. And because my father now is, is 87 years old. And he needs help. And his health condition is worsening. I'm going to redefine who I am in this relationship. And I'm going to step out of the son role. And into the caregiver role. And I'm going to accept that. I I I I honor my, my father. I honor my history with him. I'm still his son, but I'm, I'm less his son today because he needs me to be a caregiver today. And I'm going to be his caregiver. that's something that we call assimilation. This is rooted in Piaget learning theory. Another, a second way to think about it would be to redefine what it means to be a son. And so you basically say to yourself, okay. Historically, I've been a son for my dad and he, because he's 87 years old and because he has this health condition and because he needs help for me today, the, the terms of being a son are different. I'm going to redefine what it means to, to be a son for my dad at age 87 and being a son encompasses and includes all of these tasks of caregiving. And so. I'm just a different kind of son today and I'm okay with that. And, and the thing is you have to kind of reach that point of acceptance here because you can't fix your dad. And so you have to kind of reach that point that, that you're okay with redefining these, these, this relationship. But if you're still still having a lot of conflict and the tasks of caregiving are just really deeply affecting you kind of the 3rd approach would be to outsource the tasks of caregiving that are causing the greatest distress and so by by going to formal care providers You might be able to get some relief and reduce that conflict that you're having within yourself by allowing others to take over the tasks of care that are, that are causing you so much trouble. And that also comes with a lot of hassles and headaches potentially. I know this as a, as a home care company owner, you're able to also kind of get a rebalancing in the relationship and you might feel a little bit more like a son again.

Track 1: 25:36

You know, in, as a doctor, the, the, patients that are just flooding my mind, really, that have been caregivers. I have seen such a help when they have done that third step. I love what you said about the first steps, the first one and two. I mean, truthfully, that's, that's helpful for all kinds of things, not just caregiving, but defining the role that you are playing, defining the experience that you're having. And assimilating or realizing that those roles and experiences are fluid things, and they can encompass one type of thing, and then they can encompass another type of thing. I mean, truthfully, if you think about how you love anybody, if you think about how you love your child, I am the mother of this child. And when they are an infant, they, that role includes different things than when they are 16 year old girl. Let me tell you, if I tried to treat my 16 year old like my one year old, that is not going to fly.

squadcaster-f9ab_2_03-20-2024_130508: 26:27

right, you're exactly right,

Track 1: 26:30

what a beautiful way to explain that and it, I think it just goes along with our process of loving another being in this world. But I have had I had a, a dear patient who had a disabled daughter and I adjusted and worked with this, with this girl since she was a toddler. And then all the way through when she was a teenager, she was in a wheelchair, she needed she had cerebral palsy, so could do very little for herself. And because of finances at first, this mother was doing everything that she needed all by herself, all of the, like running emergency trips to all of the hospitals, just everything and trying to raise the other children while their husband worked as, as hard as he could to get money to pay for all of these things. And I truly remember the first time that she came in. Once they had finally been able to hire home help just to give her, it was, I think she had three or four hours twice a week back to herself and they did the tasks that were the hardest for her. They she, she chose the ones she wanted to take off her plate first and she would come in to get adjusted at that time where she didn't have to handle any wheelchairs and she didn't have any other children with her. And it was miraculous

squadcaster-f9ab_2_03-20-2024_130508: 27:48

changed her life, I bet.

Track 1: 27:50

The difference. Yeah. Another patient I just saw actually this week, her she's been caring for her mother in law who used to be a very sweet woman. She's 105 now and she's tired of being alive and she's not very sweet to this woman anymore. And they have been just doing full, full, full care. And the mother just went to visit someone else and she was experiencing, I was just being a safe place for her to vent a little because she doesn't ever want to complain because she loves her mother in law. She would love to help her mother in law, but having a little break where she could be herself again and, and, and rebalance, it makes, it makes things better for everyone that is involved, I think. So yeah, it can come with headaches if the company is not great that you work with, but. Just like everything else, you just keep trying until you find a good one, I think.

squadcaster-f9ab_2_03-20-2024_130508: 28:49

Yeah. Yeah.

Track 1: 28:51

And, and the money, I think you're going to end up paying the money anyway, truthfully. How I look at, at mental health, which this would categorize for me as mental and physical health, but mental health or physical health, it's like it, you're going to spend the money anyway. You're going to spend it on the front end or in the middle of it, trying to help yourself stay healthier Trying to help yourself balance, get out of the stress responses, do those things that care for ourselves, or you're gonna fall all the way apart, and then you have to spend the money to put yourself all the way together. So like, the money is hard. It's a hard subject for it, but if there's a way to, that, that, that balance point has helped me come up with money before, and it's always been the better choice for me, at least.

squadcaster-f9ab_2_03-20-2024_130508: 29:36

Yeah. I, I love what you were saying when you were talking about the the woman that came into your office just this week and, and you were just giving her space to kind of ex release, express herself safely acknowledge the struggles that she's having. You made me think of a, of a blog post. I wrote a little while ago called Five Ways You Can Support a Family Caregiver. And I, I just pulled it up. There, there are five A words. Five ways that you can support a family caregiver with a words and each, each word, each word requires a slightly different, slightly higher level of involvement from you. But those words are acknowledge. Affirm, allow, ask, and act. And the first thing is just acknowledging that the family caregiver is going through this. And so often, the family caregiver is just not even acknowledged. Because the needs of their loved one are so obvious. They're so acute, they're constant, you take your loved one to medical appointments and all of the different treatments and all of the health care delivery system is focused on the loved one, not on the caregiver, and rarely does the caregiver even get asked by the health practitioner. You know, how are you doing? Or wow, you know, you're doing a great thing. But then so just acknowledging can be Validating for the caregiver and then affirming their role Allowing them space as you did to to just Express their feelings, just get, get the load off.

Track 1: 31:20

are still a good person, even if this is a lot.

squadcaster-f9ab_2_03-20-2024_130508: 31:23

Yeah.

Track 1: 31:23

know you love your mother in law. Let's just, in this space, you're a wonderful person. She's also a wonderful person. Also, go. I

squadcaster-f9ab_2_03-20-2024_130508: 31:36

even if you're having these negative emotions, even if you're feeling resentment and dislike and stuff like that, it's very, very normal in this type of situation. And, and then asking, asking, asking the family caregiver, how can I help? What can I do to, to be there for you? And, And, then acting in accordance with with whatever they say. Sometimes, you know, there are siblings or other family members who are seeing the strain that the primary family caregiver is under, and they may not know how to help, or they may presume to know how to help, which is perhaps even worse. So the best thing to do is just ask that primary caregiver, how, how can I help you? And then Do what they ask. Don't don't offer the help that you think is needed. Offer the help that is that is requested. And and then it can become, you know, you can relieve the burden for that family caregiver and share a little bit of the load. And often that draws family members together closer together. Yeah.

Track 1: 32:45

That ask I have learned is a tender thing. I think in a lot of community or family patterns or just societal patterns. We say, Hey, can I do anything to help? How are you? And the other person says, I'm great. Thanks for asking. But I think we haven't handled well, they're like slowly dying. So I've learned with the ask and I learned when, since I was the sick person, right. I mean, I have seen many sick people. and wanted to help and felt sort of powerless and didn't know how to. But I learned that some people ask different ways. Some people ask as if they A, really do want to help, but they also ask for specifics. Like I remember somebody said, I really want to take one thing off of your to do list today that is hard for you, that would be easy for me. I have a car, I can drive, I can make phone calls, I can. Talk. I know spreadsheets. I knew whatever. And it was a tender thing for me to say yes. It was very hard for me to say yes. And I really only said yes when people offered specifics and made it clear that they wanted to, that it wasn't a big deal for them to do it and that They, they were like aching to help with something. Like I felt like I was helping them with their want to help. People came over and helped me with spreadsheets. Another woman came over and helped me shift my bank accounts around. One woman would call when she was on the, on the way to the store and she just, She just said, you know what? I know you have four kids. I know it's hard for you to get to the store. I'm going to the store right now. What do you need? I can get you 10 things. Avocados are on sale. And I was like, all right. Like, I think the way you're asking, I mean, obviously it's up to the other people to communicate their needs and you can't make somebody say yes. And you can't control what's going to come out of their mouth about what they really need. So I love that you said. Ask and with the intention that you'll, you'll do what they say. I mean, obviously if it's in within your, your boundaries of money or time or whatever, but yes, I love that. That same woman I'm thinking of family members would ask her cause they could see it was a strain, but when she said, I would love it if you could watch over mom for a week or two. They all started backpedaling and she's like, why does anybody ask if no one's going to help just makes me angrier. So I love you pointed that out.

squadcaster-f9ab_2_03-20-2024_130508: 35:16

well, I think that sometimes what happens in families when you have a primary caregiver, who's caring for the aging or disabled loved one, and then, then you have others. who are not the primary caregiver. It's, it's sometimes the primary caregiver can grow resentful of, of those other family members who in their mind, aren't stepping up sufficiently, or maybe you know, maybe you have a brother who's out of town, you know, you're caring for your mother and you have a brother who's, who lives out of town and he's not around. And, and his way of offering help as he comes in for For a visit for the weekend and takes, takes mom or dad out for a nice you know, nice evening or something. And then, and then offers a bunch of suggestions on what you can do better as a, as the, as the primary caregiver and then leaves and goes back to wherever they live.

Track 1: 36:11

you're speaking to that

squadcaster-f9ab_2_03-20-2024_130508: 36:13

This is

Track 1: 36:14

they will feel helpful and it does not feel helpful.

squadcaster-f9ab_2_03-20-2024_130508: 36:17

Yeah, And, and family caregiver, the primary caregiver can be a little bit resentful about that, you know, and, and then mom or dad, they're just like, Oh, I call this person Johnny in my book. Johnny. Oh, Johnny. So great. Oh, Johnny. So wonderfully. He's just came and spent time with us. Isn't he awesome. He makes me feel so good. And then they turn around and snarl at you because you didn't butter the toast properly. And you're living, you know, you're living day in and day out with them. And so this, this, unfortunately, this type of dynamic happens. And so to those primary caregivers in situations like that, I just try to say, you know, just you have to let it roll off of you. Have you have try to develop some, some Teflon, I guess, and just recognize that, you know, any suggestions from Johnny or other family members, you just have to assume that they're coming from a place of love. not judgment. And if it's a good suggestion, implement it. And if it's not, just let it go. And don't worry about it. But you as the primary caregiver know better how to help your loved one.

Track 1: 37:26

I'm so glad you spoke to that example. I'm thinking of other caregiving scenarios that I'm wondering if you can help with. I do know quite a few people whose parents are aging and they don't live near and someone, one of their siblings perhaps lives near, but they don't really like how they're taking care of their mom or dad. What do you do if you're, if that role is flipped and you're the Johnny, but maybe you're not sure the primary caregiver is doing a very good job. Yeah. but but you're not there. What are some, some wisdom for

squadcaster-f9ab_2_03-20-2024_130508: 38:02

Yeah. You know, these, these situations, they, they're so, they're so situational, right? Every, every, every situation is different. And so maybe just a couple of of principles that I would throw out there to consider in that type of a situation. One one kind of overarching principle is to always try to extend as much decision making as possible. To the care receiver and if we're just if we're just use the example hypothetically of a parent an aging parent and let's just say that there are multiple adult children now who are worried about their aging parent and and they're trying to figure out how to best support the aging parent. Allowing the parent to be involved in discussions about their life about the course of care that they will receive about where they will live about. The things that are important to them, that is super, super, super important. You know, unless your parent is, has, has severe dementia and is, is incompetent and incapable of making decisions for themselves. You always want to afford your parent as much input as possible in these decisions. And, and I have seen situations where adult children presume that their parent is less capable. Then they really are and the reason for that, I think is, well, they used to see mom or dad as a fully functioning, fully capable, healthy person. And now they're not, and now they have some limitations, but merely having limitations doesn't mean that they can't direct their own lives and direct their own affairs. And as an adult, they should be able to do that as much as possible. And if you. Or, and your siblings come in and try to just take over, that's going to create some resentment with your parent and it's not going to turn out well. So, so that is important. And, you know, it could, it could mean a family council, right? Where maybe all the siblings get together with the parent. I don't want to call it an intervention. I don't think you want to stage an intervention either. That can be. that can be confrontational, right? But a family counsel and say, Hey, look, mom or dad, we're, we're all concerned about you. We know, we know that you've, your things are different now. We've seen some changes in your health and we've seen, we're concerned about your wellbeing and we just want to do what's right for you and what's, and what's best for you. And we're here to help you. And. We're here to confront this this disease or this illness as a family. And we want to work together to, to help you and support you as much as possible. What does that look like? Let's have a conversation about it.

Track 1: 41:12

I love that. Instead where an intervention would be like, this is what it looks like. You are doing this. A counsel would be, we want to support you. What does that look like for you?

squadcaster-f9ab_2_03-20-2024_130508: 41:23

that's right.

Track 1: 41:24

want to be? What do you want to do? That's how I would like to be treated.

squadcaster-f9ab_2_03-20-2024_130508: 41:27

Absolutely.

Track 1: 41:27

how I would like to be treated. Yeah.

squadcaster-f9ab_2_03-20-2024_130508: 41:29

And when families are able to kind of, to approach this collectively and to share in, in the responsibility of caregiving, each person doing their part, doing what they're able to do and kind of pulling together instead of driving one another apart, it engenders more love and it can really be a very beautiful thing, even though, let's say that your, your parent is dying. for listening. At the same time, even amid that type of sorrow and loss and grief, you can find a lot of beauty and love and, and, compassion for one another. And so, yes, there's this burden associated with caregiving, but there's also a certain beauty to it.

Track 1: 42:19

Yeah. When my father passed from prostate cancer, I was pregnant with my first, I remember, and in graduate school and came home on break, and as he passed over the next week or two, I think that honestly was one of the most special, sacred times for my family. I mean, it was handled with respect. We were together in it and I think you're right. There is a collective beauty or there can be, you know, depending on how things go. I've been in other scenarios where people are close to death and on their way out and there is family arguing and there is shenanigans like going to change deeds on stuff

squadcaster-f9ab_2_03-20-2024_130508: 42:59

Yeah.

Track 1: 43:01

just hiding medical treatments.

squadcaster-f9ab_2_03-20-2024_130508: 43:03

It's very sad to see that.

Track 1: 43:05

yeah, the decisions that we make, I think, help it to become more of an experience that we will treasure or an experience that always gives us the shivers. It's the same as always. It's how we act. It's what we do. It's what we do with what we're given always.

squadcaster-f9ab_2_03-20-2024_130508: 43:20

Yeah, you're exactly right. Becca.

Track 1: 43:23

So you said you had a few tips and then I have to sort of divert you. So let's go back. If you weren't the main person, one was extending decision making to the parent as much as possible.

squadcaster-f9ab_2_03-20-2024_130508: 43:33

So, okay. So, if we're going back, if you were the sibling and you're, you're trying to work with the primary caregiver and you have some suggestions. So I think another part of that would be. It might be, it might become necessary or appropriate to have a kind of a sidebar conversation without your parent and say, hey I really, I've been seeing what you're doing as a family caregiver as, as the primary caregiver in the family. And. How's it going? How do you feel like it's going? And, and what can I do to help? And, and just having a an open conversation, you may find that the primary caregiver in the family is really struggling and has concerns. And maybe some of those concerns are the same ones that you have. And so you're opening the door for kind of some joint problem solving there. You may not be aware of,

Track 1: 44:25

to handle that.

squadcaster-f9ab_2_03-20-2024_130508: 44:26

You may not be aware of how much stress the primary caregiver is under. And I will say this, Becca I've, I've myself, I myself have experienced this and I've seen it time and time again with family caregivers that Other members of the family and even the care receiver cannot and do not understand fully the, the pressure, the emotional roller coaster the challenge, the, the internal struggles that the primary family caregiver goes through. If you have a primary caregiver who is spending the vast majority of their time caring for a loved one. The load is great. And the load is not just physical. It's also emotional, and spiritual, and mental. And it is relentless. And When you kind of maybe are involved in the periphery, you check in and you check out unless you've experienced that load before you, you cannot understand what it's like for them. And so exercising a little bit of grace. Is important. I think

Track 1: 45:39

Yes. I love your suggestion to ask them how they're really doing and that your concerns may be the same as their concerns. That is so different than saying, Hey, I noticed this. Why are you making that decision? Which, you know, is

squadcaster-f9ab_2_03-20-2024_130508: 45:54

it's just a rush. It sounds like a rush to judgment, doesn't it?

Track 1: 45:57

exactly. And if you're under that much strain and little miss Susie, little sister is asking you why you're doing it that way. Really? It's pretty obvious to think there will probably be snappy frustration and resentment building. But as in all things, that honest ask, the compassion about how you're doing. I have a thing on my wall that says no love is ever wasted and it's on my wall because I believe it. I mean, you could ask a question to someone about how they're really doing and they may be truthful with you or they may not. But at least you showed up with love, which is not wasted. And if they decide to be truthful, I think you're right. You probably would be concerned about the same things. And then you can have an honest conversation. And then that's how we come together as a family. I love that distinction you made.

squadcaster-f9ab_2_03-20-2024_130508: 46:48

Well, I love the, your, your quote there. No love is ever wasted. it it made me think Becca of family members of people who have dementia and Sometimes family members come to this, once the, in the advanced stages of the disease where the person with dementia is, is non responsive, they don't recognize their family members you may be tempted to say, oh, I don't, I don't need to go visit mom or dad because they, they don't even recognize me. And that idea, no love is ever wasted. I that's something that I, I might, I might borrow that Becca, if that's okay with you.

Track 1: 47:29

Well, it's on my wall from someone else. It doesn't have a person that said it or I would quote them. It's just a thing that I cut out.

squadcaster-f9ab_2_03-20-2024_130508: 47:37

but so that's something that, you know, showing that kind of love and just being there for your, for your, your person who has dementia It's a beautiful thing. That is not a waste of your time or energy. And they will benefit that from that expression of love. And so will you.

Track 1: 47:54

think that is true. You know, when there was a period with my brain injury and all the things I had going on with my spinal cord that I could not speak or move. And it was really something for me to be in there, but not be able to communicate very well. I would try to just like shine my appreciation out of my body and hope that energy would whack the people next to me or something. But that experience taught me so much. Number one, we don't know really what they are picking up. And I think that's true for comas, for strokes, for possibly even dementia. I mean we have had family members that have had dementia. My husband's grandmother passed from dementia. It's one of those things that just gives me the shivers truthfully, but I've looked in their eyes and you're not sure that they really know anything, but Who are we to say what that love is for? I mean, it can be teaching us. It can be teaching our children. It can be affecting the other caregivers. It can, when we look at, when we put love into a space, what will it do? And we think it's going to have a certain outcome. If it doesn't have that outcome, we might think it's wasted, but the outcomes of love, we never can guess. It is an energy that just ripples and ripples and ripples. So I say, Show up, like just show up with the love that you can with the gratitude that you can with the open questions that you can and, and just watch what happens really.

squadcaster-f9ab_2_03-20-2024_130508: 49:24

Amen. You know, as you were speaking, Becca, I was just thinking about this, this gap in time where, you know, As you mentioned at the front of the show, we, we met a few years ago and, and only recently were able to to reconnect and I can just, I can only imagine what you went through personally with those health challenges. And I look at you today and you, you look fantastic. It's the Becca that I knew before. And it's, it's almost like, you know, that, that whole journey that you went through. I mean, my heart goes out to you and your family and. I'm really just impressed at how you've taken that experience and, and your professional life and sort of brought that to create this podcast to try to help others. And so I just, I just salute you for that. And, and I'm so glad that you're in a better place today than you were.

Track 1: 50:25

Thank you. And it's similar to yours, right? I mean, this happened and I realized that just ocean, the by yourself in the ocean No one seems to know what to do to help you kind of feeling when you are the patient. And I thought I was compassionate as a doctor. I was compassionate as a doctor, I

squadcaster-f9ab_2_03-20-2024_130508: 50:46

Sure you were.

Track 1: 50:47

but you just can't know until you're there. Same as a caregiver. You can't know until you're there, what that's really like. And same as most people that launch into doing something that feeds their soul, it's, you find something that needs to change. And. I think there's just such good information and there's such good people out there that have helped me or that I know are helping other people. And the whole point of the podcast really is to connect more people with those people.

squadcaster-f9ab_2_03-20-2024_130508: 51:17

That's awesome.

Track 1: 51:18

with you, Erin, more people with you. So if people want to get, I know we need to wrap it up because you have another appointment, which I'm happy about, you're a busy dude. So how, if people want to follow up, hear more of you, see more of you, or read your blog posts or your book. Can you tell me where they go and how they can follow up?

squadcaster-f9ab_2_03-20-2024_130508: 51:41

Yeah, so my website is caregiving kinetics.com and kinetics is spelled KNI. No, that's not how you spell kinetics. I say this all the time. Caregiving kinetics.com. K-I-N-E-T-I-C-S caregiving kinetics.com. There is a blog there. There's also a bunch of models that. are about caregiving that are downloadable and they're freely accessible to family caregivers and also to licensed professionals who support them. They're there for the taking and, and they've been shown to be very useful for family caregiving situations. The book is called When Caregiving Calls. Guidance as you care for a parent, spouse, or aging relative, and you can get it in paperback or ebook or audio book.

Track 1: 52:33

Oh, fun. That's wonderful. Are you reading the audio book

squadcaster-f9ab_2_03-20-2024_130508: 52:40

I am the reader. Yes, I did it myself. I, I had to come around to that and I'm not like some kind of radio voice, but I, I, I took some auditions and I heard it just incredible velvet radio guy. And as soon as I heard him read my words, I was like, oh, I have to read this book.

Track 1: 53:02

Yes, I'm saying yay because I think it could come through your voice differently than anyone else. You have a very strong mix of logic and compassion, so I'm glad you

squadcaster-f9ab_2_03-20-2024_130508: 53:13

Oh, thank you Wow.

Track 1: 53:14

your own. Okay. And your contact information is also on your website as well. So Erin, thank you so much for the time you've given to us today and the wisdom you've shared. The work you do in the world is important and, and everyone I know. We'll probably be caring for someone if they haven't already. So thank you for sharing this since everyone, truly everyone can use it. Thank you for what you do.

squadcaster-f9ab_2_03-20-2024_130508: 53:42

Thank you, Becca.

53:49

​Well, I'm hoping you got as much out of that as I did. I just can't think of anyone better equipped to teach us then Aaron blight. Takeaways for me would be number one. Part of the reason that caregiving can be so mentally frustrating. Is that the roles change and our roles that we have with each other and family systems are loaded with meaning. So his tips to redefine your role, I thought were really helpful. Like what it means to be a, for example, daughter in this role and being a daughter in this scenario now includes these tasks. Interesting how we need to update ourselves. It can also be really helpful to outsource the tasks that give you the greatest distress to give yourself that extra bit of head space, which helps everybody. I also like how we address the five ways to support a family caregiver. So if you know someone who is offering a lot of family support, So if you know someone who is caregiving in a family, It's so helpful to know how to reach out to them. First of all, acknowledging what they are doing and affirming its importance. Allowing them to have this space, to have the emotions that they have and to express them and then ask how you can help. In meaningful ways and actually act on what they say. And then I also enjoyed. What he shared about if you are not the main caregiver. And how you can extend the decision-making to the person you're caring for as much as possible if that's appropriate or also what you can do if you are not the main caregiver, but you're trying to support the main caregiver asking questions, acknowledging, validating. And asking how they are. Again, I think. most of us will be in that scenario at one point or another in our lives. So I'm so grateful that Erin was willing to come on. And teach us how it's done. For more of his follow-up you can find all the links to his book and his website in the show notes. Next week is the final episode of season one. And I am leaving you with an empowering conversation from a great guest. Her name is Holly bridges. She lives in Western Australia. And by the end of the episode, you will probably along with me, just really want to go and visit her there. We can look at the stars by night and during the day just geek out on nervous system integration. That is what she does. So if you've been listening all season long, you've heard a few different guests reference. Stephen Porges has worked on what is called the polyvagal theory. He put together how our nervous system works with safety. And how so much of our responses like fight or flight or rest and digest have to do with safety. And he also identified other states that our nervous system can be in like freeze or fawn. He made a very amazing but complicated book and theory about it and she simplified and distilled it down. Talking about things as it relates to autism or PTSD kind of responses where people may freeze or fawn, she simplified it. Like someone can do only when they really understand it. You know how a master can say something in very few words that it takes a novice, a lot of words to say, that's what I feel like when I read her book. So she is the author of reframe your thinking around autism. It's a fantastic book, just about nervous system regulation, but especially if you are involved in the life of anybody who is on the autistic spectrum. It's a really great help to help you understand. What is happening in their world. What I noticed though, as it relates to what's happening in my world. And it's relating to what people talk about in the world of trauma. What people talk about in any of the states where we get into overwhelm and anxiety, it's just our nervous system. And she explains it really well. She also created the anxiety reframe technique. And that is where she works with people of all levels of anxiety or meltdown or shut down. And helps them come back through their senses. In a beautiful way to get their nervous system to balance. She's an author teacher thought leader, keynote speaker, and she also is developing scientific works for scientific journals. I got to read through the latest of hers and it's really good stuff. So we are in good hands for the final episode next week. I'm excited to meet you here.