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The cost & courage of caring - stories that spark resilience.
Speaker 2 (00:00.43)
Welcome everybody to the Caregivers podcast this week. We're so thrilled you're here. We have an amazing guest. This week we have a wonderful opportunity to speak with Jeanette Yates. She is a blogger, podcaster, mom, has been a caregiver for most of her life and draws on incredible experiences which she's going to share with us today. She's the author of a book which I must say is definitely worth reading and is very inspiring from guilt to good enough.
Jeanette, welcome. It's so good to have you here. Maybe we'll just kick it off with a couple of questions. I think we're going to leave it to you to just take us where you need to take us.
Sounds great.
Speaker 2 (00:43.438)
So, you know, as a caregiver, I've really noticed that have a remarkable story of love dedication to a parent and obviously the loss and reclaiming of yourself. And we'd really like you to be able to share what you've been through with our listeners, our subscribers, everybody out there today.
First of all, I just want to thank you for having me on the podcast and for your very kind words. I really appreciate it. And I just love, for those of you who are watching the podcast, the former English teacher in me has just lit up with the fact that there's a highlighter next to my book that you have read. So thank you for that.
That's only one color. I use multiple.
Wow, impressive. So it is my honor also to share my story about caregiving for my mother. When I was nine years old, I think in my book I said eight, but that's just because I can't do math. I was nine in 1984 when she was diagnosed with her illness, which was a disease called myasthenia gravis. It doesn't have to be that devastating, but it can be. And for her, it certainly was.
And so for most of my life, I have been in some aspect her caregiver, starting at a very young age when she came home from the hospital after her diagnosis and surgery that she had all the way until June of this year when she passed away. And so, yeah, it was both...
Speaker 1 (02:21.818)
I didn't know I was a caregiver when I was eight or nine. I didn't know when I was growing up that's what I was doing. I just thought I was being a good daughter. I thought I was being a good helper. Most of us when we're growing up and we want to be obedient to our parents, I was no different. Just the things that I was expected to do and asked to do were just a little bit different than my friends. And so it wasn't until
you know, a couple of decades ago that I would have said I was a caregiver, but that definitely happened. I came across a book that she, one of those mother-daughter books, you know, that they have where the mother and daughter kind of answer each other, answer questions for each other. I came across one of those books recently and she's talking about me being her caregiver in it. That's part of what we're doing. It was 23 years ago.
she filled out the book. So you can just see how like even then it was like, it's been such a long journey. That was 20 something years ago. There's so much to say. I want to let you ask specific questions. But what I will say is what I also did not understand is that I was traumatized by the fact that
As a young child, my mother almost died. When she was initially in the hospital and recovering, I stayed with a relative and it was in that home that I was abused. So my abuse trauma and my caregiver trauma and my childhood trauma all tied up together and that was something that showed itself in many ways in my life.
you know, different, and then as my caregiving journey ramped up, as you might say, in the last decade, it really reared its ugly head and caused me to need to confront that, the things in my childhood that were not,
Speaker 1 (04:45.912)
that I still was wounded from, that I still needed to heal from, that I still needed to work through. because I was experiencing such burnout, such overwhelm, such guilt that I was not really able to function emotionally at all. And I was putting on a good face, but of course that's just part of what we do as perfectionist people with unhealed trauma. anyway, that...
That's what happened and that's the story in my book is how everything kind of came to a head and how I crawled myself out of the burnout and the overwhelm and the crushing guilt.
We're going have lots of things to be able to explore it. And you've certainly explored them elegantly in your book with some really inspiring thoughts. But obviously there was that culmination event about a decade ago where it's the coping mechanisms, their resilience was being tested to the max. then at some point things sort of started imploding. And what were the first things that you noticed that were starting to go wrong?
Well, you know, there's definitely, I will say there wasn't one thing. It was a series of little things that were happening. was, you know, was on automatic pilot for forever. Whenever my mom needed something, you know, when she needed my help, she would ask for it. I would give it to her at the end, right? And that was how things went. And for a long period of time, it was manageable. She was there.
large stretches of that journey for her and me where she was, you know, able to live independently. She drove a car, you know, these kind of, you know, she worked a job and she just needed extra help every now and then. And then it was more help and more help and more help until it was, you know, an everyday thing, you know, all day, every day, you know, more and more and more. And so I
Speaker 1 (06:52.12)
didn't ever have the opportunity to say, what am I really able to do as a caregiver here? So I think my story is a little bit different than a lot of people coming into caregiving because there's a typical, there's a diagnosis that doesn't happen when you're nine. Your parent is a diagnosis when you're already an adult and you can
walk into that a little bit. We're all still clueless about what it means to take care of someone until we're doing it. But there's a little bit more open eye. Whereas I started caregiving when I was a child and you were obedient to your parent and you said yes when they ask you to do something and said that was just my MO. And so as her health continued to decline over the, about 10 years ago,
I just continued to say yes and yes and yes and yes and yes. I got married, I had kids, I still was saying yes and yes and yes and yes. And so my life got more, how do I want to say this? I just was doing everything for everybody else and not hearing myself at all.
there were little things like...
feeling like, I wanna be home with my kid, know, haven't, you know, haven't hung out with my family in the evenings very often, because I was always over at my mom's getting her dinner and getting ready for bed and all that kind of stuff. And so, you know, I started trying to like be home for dinner. And I would, I remember like the first week I tried to do that and like, nobody was here. Nobody was home.
Speaker 1 (08:50.446)
because they didn't expect me to be there, so it didn't matter. And they hadn't told me they weren't going to be there because they didn't, it didn't occur to them to tell me they weren't going to be home because they knew I wasn't going to be home. And I thought, oh man, yeah, that was very hard. So there's that kind of stuff that was happening. And then there was this, you know, I had had, you know,
must have really hit home.
Speaker 1 (09:18.316)
I grew up, both of my mom and my stepdad were mental health professionals. you know, I knew all about, or so I thought, all about taking care of your mental health and taking care of yourself. And so, you know, I would read articles and hear things about caregiver burnout and I would say, okay, well, you know, all the things that, you we're gonna, you need to do yoga and breathing exercises and you need to exercise. Well, I was a fitness instructor.
ran half marathons, I taught Bible studies, led a prayer group, I wrote in journals every day, I had a blog, all these kind of things. I was doing all the things, I got massages, I did it all. And I was still a nervous wreck. My anxiety was so high, I was tired, angry, but not afraid to, I didn't call it anger then, but I was.
But you know, like there are all these things and I I remember one time trying to set a boundary with my mother and You know, I'm not gonna be jumping up in the middle of the night to drive over she looked like five minutes away drive over here to like turn off your light and your ceiling fan because you forgot before you sat down like I'm not doing that, you know, whatever like if it's not an emergency, I'm not coming but
you know, everything became an emergency. So I would get a call very frequently. And I remember like getting up, getting in my car, barefooted in pajamas, driving over there. was just so pissed off. I was so annoyed, so frustrated. And then I just was like, why are you mad at her? You're the one that got up and got in a car. What's happening? So like I started recognizing like,
something's not connecting here. Like, there's, you know, I'm doing all the self-care things, it's not helping my burnout. I'm trying to set boundaries, that's not working. You know, what's wrong? And so it was those types of incidents, and there were a million, those are the ones I typically talk about. They were the big ah-hahs. That I said, okay, something's gotta give. Something's got to change.
Speaker 1 (11:40.738)
I got into therapy and I started working on it and started to slowly but surely step out of the, you know, I recently came up with this analogy. Like I was trying to clean up the broken china in the china shop while the bull was still in the china shop, you know?
So that really, really captures it vividly, actually. We're focused on wellness, but at the same time, we're a well mess. know, one letter changes the whole meaning of the word and that echoes as well. And I've heard this a couple of times already. In fact, just last week on the podcast, we were speaking with Jess Ronnie and she was saying the same thing that doing
Yeah.
Speaker 2 (12:34.25)
everything and you're still in pain. Your body is still in pain. Your soul is still in pain, yet you've checked everything off on the self-care list. I think that's a resounding message. And we're going to get into that because I think that's a huge contribution. I felt that your book made to raising awareness. We talk so much these days about personalized medicine and personalized
care, but we don't talk about personalized self care. Right. And maybe because we're not that good at being personalized about our own self care or being, you know, self-directed in that way, really asking ourselves those questions because very often we're so other oriented. But it really is a turning point, I think. And it must have been for you, and it certainly echoed in your book that once you actually ask yourself,
what those tick boxes actually mean to you and what purpose do they reflect or, you know, how are they related to you and your needs? Suddenly the game changes. Tell us a little bit, but it felt to sort of get to that point where, here you are, mechanisms that you've relied on are imploding, mom is getting sicker and sicker and the demands are higher. Your social structure at home is
no longer expecting you to be around because things have changed. Walk us through those hours that led to sort of that first step in that sort of self-realization of purpose and self-care.
So years ago, I taught Pilates at the local YNCA. And I did a lot of study about that particular method and fitness in general. I remember constantly being, and I'm recovering from my own eating disorder and over-exercising. that was part,
Speaker 1 (14:47.67)
I was in strong recovery from that, but I still was recovering from that. So was trying to figure out fitness and body in a healthy way. And then I would constantly run into, people would constantly come up to me and they would say, I need a flatter stomach or I need a different shape, this or that. How do I get that? How do I do that? And I would say to them,
This does answer your question, by the way. I'm kidding there. But I would say to them, which is what I said to myself, is before you, your exercise routine, whatever it is, as you're trying to figure out what that is, you need to ask yourself, do I need to be doing with my body right now in my life? What does my body need to be doing in order to fulfill my purpose right now in my life?
And then if you can do those things, then whatever you're currently doing is probably enough. Now, if you wanna say, well, I wanna run a turkey trot at Thanksgiving and you wanna train for that, that's fine, but that's extra. You don't need to do that in order to be in shape. You already are in shape enough to do the things that you need to be doing in your life right now. And the same thing, and then so like when I was in the middle of it, as I'm trying to figure out
how to get out of my burnout, I had forgotten all that, that I used to teach people, right? And so I began to reassess, you know, what do I need to be doing to take care of myself right now? And in order to figure that out, I had to figure out like, what is my purpose right now? And while part of my purpose was to,
care for my mother. That wasn't my only purpose. I also had a husband, a family, a job, and also a relationship as my mom's daughter. Like I wanted to be my mom's daughter, not just her caregiver. And things were so bad at that time. Like I was basically just like a CNA, you know. I was doing CNA work, which is very important work.
Speaker 1 (17:12.162)
but I was not connecting with her, nor she, me, in the way that either one of us wanted. And so I had to pull back a little bit and say, okay, what is your purpose now? And then in order to be able to do all these things, what do you need to be doing? And honestly, it was less exercise and it was more sleep.
and therapy.
The power of rest, so underestimated. So if I understand you correctly, you felt like you're just working like someone from a nursing agency, taking care of all of those issues, but not actually existing in the moment as daughter in a relationship with their mom and building that relationship and nurturing that relationship.
Yeah, we would have moments, but for the most part, I was, what do you need? Let me do it. know, when's our next appointment? What do we have to do? You know, it was just very, and there wasn't this sense, and she would want me to like sit around and visit because we're, you know, the set where she's from farm country and front porch sitting and visiting is what they do. And she would want to do that. And I just, you know, I had kids and, you know, all this stuff when I was like, I have time to sit here and visit. And so
You know, I couldn't, you know.
Speaker 1 (18:36.152)
She needed more than I could give her, but I was still trying to give it all. And I was recognizing that I was not able to give my children the care and attention that they deserved, which incidentally, this might be a whole other podcast. But like their adults,
they're young adults now and we're having to talk about those types of things now.
of being able to talk about it is huge as opposed to maintaining the silence for decades to come and better sooner than later. You know, one word that has emerged and maybe it's sort of, you know, the podcast today is brought to you by the word or instead of the letter for those of us who grew up on Sesame Street, but I think purpose is really an important word. And I wonder if you could comment.
How much does perfectionism and guilt actually serve as the antidote to purpose? Or in other words, how much do they block purpose from being achieved when perfectionism and constant feelings of guilt in our head creep in?
So perfectionism for me started at a very young age and it was based on fear and through that guilt. And I think you even talk about this in your episode about generational trauma, but my mom, was,
Speaker 1 (20:25.28)
understood when my mom came home, I understood this thing. She was sick and she was going to need help and I could be a good girl and help her. And also her disease got real, it got worse. She could get worse again and have to go back to the hospital if she, if there was anything stressful or that was
that caused her to get upset. So as a kid, what are the things that kids do that upset their parents? They're disobedient, they make bad grades. They make a mess, you know. And so, you know, nobody ever said you have to make straight A's. But in my head, I understood
pressure
Speaker 1 (21:24.192)
that I better make sure that I'm doing my very, very best to be a perfect student and I better not get in trouble at school because then they would have to call my mom and then that would be, you know, it would get her upset. You know, there was all this kind of stuff. So it was planted so young. And so, of course, as I grew up, that, you know, it didn't only, it wasn't only like towards my mom.
I had this perfectionist tendency. was everybody like, they're getting upset. better, you know, this guy I'm dating is getting upset. I better do something about it. I better be better. I better be perfect. And that's where the, you know, the body image, you know, so it like crept in and it just built itself. And so like in every relationship I had, working, friendships, relationships, and parenting and everything.
it was like, it wasn't good enough to be good, I had to be perfect. And so as a caregiver though, I think we are all, whether you have those perfectionist tendencies or not, I think good caregiver often translates to you can't make any mistakes. Like I think a lot of caregivers, a lot of us,
Good enough is not good enough. It has to be perfect. If we make any mistakes, our loved one's gonna die, right? Is what we feel like. And so we are very hard on ourselves. So that's where that guilt comes in.
All of those early experiences too, and that sort of level of responsibility, those are all the seeds of a very powerful inner critic that sort of follows you as you move on in time and it certainly can drown out your inner voice and your inner purpose.
Speaker 1 (23:21.838)
Which is why I do want to say this. I do talk about that intuitive self-care and individualized understanding of your own self-care, but I do think it's very important if you haven't addressed some of those wounds with a therapist, for example, it's hard to hear yourself. Your critic is going to be really loud or you're, you know, there's...
other voices, you know.
from your past that can be very loud. For me, I also had to battle the belief systems that I was raised in and just like the kind of like the culture of my family culture and also my faith and just how I had misconstrued beliefs, you know, and then I had kind of created this cage essentially.
for myself where I had no little room. It was perfection or nothing.
Well, you mentioned the fact that there was a lot of family traditions passed down or each generation looked after the next and it was just kind of understood and it wasn't really negotiable or flexible, but it just sort of was. So.
Speaker 2 (24:50.56)
As you went through this phase, mean, you amassed quite a few sets of self-care tools, but you had that sort of awakening that they weren't working. But you touched on an important point where sometimes when things get really hectic, we need to sort of look at what we usually do and then sort of whittle it down to the core that allows you to function during periods of crisis. Right. So can you tell us, and I think this is really important for the listeners to hear,
about your concept of the self-care crisis plan.
So, incidentally, this is also like the beginner plan. So, it's a plan for when you're in crisis, but also when you're just getting started, there is this important, you just want to make sure that you're getting the basics done. And what I did to try to figure out what that was, I'm a big nerd, guess. I love like reading and research and all this kind of stuff, but.
What kept popping up in my head when I would think about what is the basic thing that I need right now when I'm sitting in the ICU with my mom? What is this? I would think about Maslow's hierarchy of needs and just the idea of when you look at that bottom of that pyramid that we all, if we took any kind of psychology class in high school or college, we remember it. In there is food,
water and sleep. And then, you know, there's a couple other things, but it's like, okay, I've got to do that basic thing, those basic things. I have to make sure that I'm fueling my body. I have to make sure that I'm hydrating. I have to make sure that I'm getting some rest. Will I get, you know, will my, you know, fitness tracker tell me that I've gotten all the rest I need? Probably not.
Speaker 1 (26:48.654)
But that doesn't mean I'm not going to try to get some rest. And then for me also, because I have spent so many days and nights, days and nights sitting, sitting, in a hospital room or an ER moving. And so when I am in a crisis myself or when I'm helping a caregiver in crisis, I'm just like, you just got to remember these things.
And what it looks like for you and what it looks like for me are two separate things. My crisis plan has the same elements. Eat something, drink water, get some rest and move. The way I do that and the way you do that might be different, but those are the four things that we're gonna do. And so for me, if you're completely overwhelmed and you...
don't know where to start, but you know you need to be taking better care of yourself. Whether you're in crisis or not, whether there's a caregiving crisis or not, you're in crisis. So start with the crisis plan and start with that beginner, just let me get these four things out of the way. And I think if we start with that, that allows our body to get enough of what we need to start thinking.
broader for maintenance, self-care, that kind of thing. So that's my story, and I'm sticking to it.
That certainly sets the, as you said, the groundwork for getting through those times.
Speaker 2 (28:39.306)
I think when we try to sort of set those new directions for ourselves, we always get hard on ourselves when we don't quite hit the first pitch. establishing even that basic crisis plan takes a little bit of obviously resilience and determination, but also some auto reflection to see, ask yourself how it's going and you may only be able to have that conversation with yourself.
Did you have any setbacks during those times as you sort of initiated these basics? And how did you deal with the setbacks with, I really want to take care of myself, but boy, I'm just blowing it.
Yeah, well, of course. One thing that really helped me though, because I, know, one of the things that also has to happen in order, I think, for caregivers to start taking care of themselves, and this is why self-care doesn't work. There's a couple of major reasons. One, the term self-care is very vague. What do we even mean by that? What are we talking about? The wellness industry has its, you know, a candle can be self-care.
a vacation to Hawaii can be self-care. Like, what are we talking about? It's just, we, so I think, you know, that goes back to that definition, you know, defining, you know, thinking about your purpose, things like that. But I also think that we are very hard on ourselves. We do expect to be able to
find a cell, do some figure, download a program or get an app or sign up for the gym and go, you know, and we think, yeah, we're gonna do that. All we need to do is have the right thing and then we're gonna do it. Well, we're not gonna do anything if we feel guilty about doing it. It's not gonna work. Yeah, and so one thing, setbacks often happen when you start, you're like, yeah, you you go to a, you know.
Speaker 2 (30:36.622)
Step one.
Speaker 1 (30:46.572)
You read a book and you're like, yeah, this, this book is good. Okay, I'm ready. I'm ready to start setting boundaries and taking care of myself and blah, blah, blah. And then you actually go do it and you have to interact with other people. You make a plan. You're like, I'm gonna get up 30 minutes early and touch my toes and whatever it is. And then you have to end up staying up all night because your loved one is having an episode and you have to deal with them. You have to be with them or whatever.
or you try to go to sleep and you can't because your mind's racing and all this stuff. And then, you know, then you're, then you don't get up in the morning and then you feel like junk about yourself. So I, and as if you're a perfectionist, you know, then you've ruined it. It's over. It's, you know, then you'd be
Didn't cut out part five like you're supposed to.
Yeah, you know, yeah, lazy, you know, whatever. Or you get up and then you're like, well, I'm, this is supposed to be my time, but I could also fold the laundry and I could also, you know, sort, or, you know, you flip into what do need to be doing mode outside of for myself? So there's a couple of different things. But one of the things that really helped me whenever I would have a setback is I would remember
what I learned in recovery when I was recovering from my eating disorder is like no relapse diminishes what you've already learned in your recovery. So you still bring all that knowledge with you as you start again. And so I was able to say, know, like for example, with the boundary setting, which is another component,
Speaker 1 (32:37.79)
after you get through that basic self-care where you're literally just feeding yourself and hydrating. And then you start to have, you want to like carve out a small amount of time and that involves a boundary of some sort usually with some, you And I got really good at setting that boundary and I would say, I would set my boundary and I would do it. then...
I would be in the car halfway over there and be like, argh, know, wow, why, you know, this is, I'm not supposed to do this. This is not an emergency. And I would beat myself up. And then I would say, no, you're a human being. You're, you know, you can put that boundary back up tomorrow. And so I would remind myself, and so what I ended up doing with both the boundary setting and with my own goals.
was giving myself more grace. And so I thought about boundaries that I was setting in order to have more time for myself or my family or for things that I enjoy outside of caregiving is, you know, the boundary is not a big concrete wall that we can't hear or see or feel anything through. It is a, like I mentioned, my family's farm people.
when you drive out in the country, there's these fences that, you know, cattle don't run through, but really, they probably could if they wanted to. But there's room for, you know, bees and, you know, animals to jump over and through, you know, like little squirrels and birds and all this, but it still designates my property from your property.
Mm-hmm.
Speaker 1 (34:32.654)
But neighbors can still come to the fence and talk to each other, share, have relationship with each other. That's what the boundary looks like for me in caregiving. It's not a wall. It's a place to gather for communication and then decide whether or not I need to hop over that boundary because you need help or not. that was one thing. And then with the goals for my self-care, it was like, yeah, of
Of course I want to do this 75 hard or whatever plan that tells me for 75 days, it gives me exactly what I need to do. number one, I'm probably not gonna sign up for that as a caregiver anyway, but let's say I do. And in this plan, it says, well, if you miss a day, you gotta start over.
Speaker 1 (35:33.057)
Thanks, you know that.
That's such a huge message and it's like cutting yourself some slack doesn't make you a slacker. No. And that sort of permissiveness is what makes it a little bit personal. And obviously it's not a commitment to never doing it, know, to never participating in whatever you set out as a goal. But it's all about that sort of self-reflective.
really self-compassion directed to you for a change. I mean, we're so good at giving it to others and providing safe spaces and providing care that's non-judgmental and all of these things. But when it's time to reflect on ourselves, boy, can we find ourselves in a position where we really come down.
Hard on ourselves and you know, it's interesting you said it's not all over I had this flashback to playing snakes and ladders as a kid where you're like almost winning and then you get on that one and you're all down at the beginning again and you just slide away and It doesn't have to be that way
Yeah.
Speaker 1 (36:35.278)
No, you can make up your own rules. And you can say, I like the idea of 75 hard, but you know what? I'm not gonna do it exactly that way, because that doesn't work for me. So if I have to skip a day, I'm just gonna keep going the next day. You know what I'm saying? We can make up our own rules. I love, speaking of cutting some slack, and I love what you said. That has a nice little ring to it. Cutting yourself some slack does not mean you're a slacker.
The origin of the phrase cutting some slack is the idea of releasing tension with ropes. So if you think about cutting yourself some slack is releasing tension that you have on yourself. It's a lot less, you know, judgy of us, of ourselves. anyway, I just like to give people a different way to think about things.
Wonderful. So you've witnessed, I mean, you've witnessed as you look back on your journey so much, and we also are hearing so much about the landscape of caregiving, be it professional or at home, non-professional, and there's so many different hats that can be worn when it comes to caregiving, but there's certain bonds that I think
You
Speaker 2 (37:56.396)
keep caregivers together and it's care, we give of ourselves. And usually when we feel we can't give anymore, we kind of give more anyway. I think we're all united in that sense. No matter what kind of care we provide, the landscape's changing. We're seeing credible numbers emerging in terms of the numbers just in the US of individuals who are involved in the care of loved ones.
And as the population is aging, this is having a huge impact, whether it's your partner, whether it's your parents. We're obviously witnessing what's happening to caregivers professionally in so many domains. And you hear about burnout across the board. It's not just physicians and nurses, it's physiotherapists, it's occupational therapists, social workers, people who are championing non-for-profits who are just giving it to try and advance the mission.
What are your thoughts about the current landscape for caregiving today? What's the hardest thing about the space we find ourselves in?
how much time do we have?
We got lots.
Speaker 1 (39:09.95)
Well, so this is getting discussed more, which I think is important that the aging population is going to continue to rise over the next several years. There is this increase in lifespan, but not an increase in healthspan or financial.
ability to, you know, if your lifespan extends past your financial situation, you know, that's that that can be a problem, right? And so I think there
there is not a system currently set up, at least in my country, in the United States, where the professional system, the medical system is not set up, the health system is not set up, and then also caregivers, family caregivers are under-equipped. So the professionals are under-equipped just by sheer numbers.
And then also we as family caregivers, more and more and more of the burden is going to fall on us. I don't think a lot of, know, I tend to speak more to the family caregivers, right? Like I don't think people, you know, cause I'm 50, so a lot of people my age are now starting to deal with their parents.
But we should have been thinking about this years ago, not right now. And I worry that as the aging population continues to grow, there's advancements made in treatments for things, treatments for health conditions without advancements made in how to help with sustaining
Speaker 1 (41:21.998)
quality of life. There is going to be just a continued disconnect there and it's going to create more of a burden on everybody. One of the things that I think is the another thing that we need to talk about is, you know, like I mentioned that I have trauma tied into my caregiving journey, but I was not traumatized. Like my mom did not intentionally
traumatized me, know, that was circumstance, you know, that kind of thing. I knew that she loved me. But another thing that's happening with this increase of reliance on family caregivers is there are family members being asked to care for loved ones who hurt them.
and they don't know how to say no, and in some states they're not allowed to.
Speaker 1 (42:23.662)
I don't know a ton about the different laws in different states, but I hear from other caregivers that in some states, if you are the child of the person, you are responsible for them, period. And I've heard it several times. And that's another thing that I'm concerned about is there doesn't seem to be any acknowledgement that it's not always safe for...
Well, it's not always safe for the family to take care of loved ones anyway. Like sometimes they need to be somewhere. But there's this other kind of safety that we're not thinking about either.
compounding effect I imagine, not just the demands of caregiving, but the retrospective and sort of the forward compounding effects of trauma on the whole experience and resilience and all of these important factors which would be shaped and I would probably set the stage for a caregiver under that circumstance being very disadvantaged and possibly even in harm's way.
What do you think? mean, there's a lot of interest about new technologies around the corner. Everybody's talking about AI and there's amazing concepts that are being tested in prototypes whereby, for example, you can be at work and the little bot at home who's chatting with mom or dad or uncle or auntie is also making sure that they take their medications on time. And you as a
caregiver, but also as someone who's employed and who's got a family, et cetera, can sort of feel confident that you can unload some of this and new technology is actually there to help you. There are lot of skeptics about new technology. And I think, of course, it needs to be held accountable to scrutiny and to make sure that version one is not what gets distributed. And then you realize, there's some major glitches here. We should have waited until version five.
Speaker 2 (44:27.822)
prospect of such tools and changing the life and caregiving could have some really amazing rewards. You look back to that period of time where you were really drained and really struggling to keep up with the demands. How do you think technology could have helped you then and what do you welcome now as what might be around the corner?
Well, I do want to say a couple of things. I've worked in technology for a while. I was a social media marketer for a while. I was figuring out what social media was when everyone was still not sure about it. And we still aren't sure about it. of progress. Right. But I will say one of the roles that I had was
how do you, you I was tasked with how do we use this tool for good? That was my job is to try to figure that out. And one of the things that I always, when I would do teach, you know, when I do teachings or talks, I talked about my mom and how social media allowed her to be social when she was homebound. So there,
In that way, it was a good thing and probably prolonged her life because she was able to connect with people and she connected with childhood friends and all this kind of stuff. And then sometimes they would get to see each other in person and this was great and all these things. so I tend to hope the best for technology that it will provide that.
that there's good that can be found, just like there's bad.
Speaker 2 (46:22.872)
The key messaging there though is that make sure if you can still get out of the house, choose getting out of the house to get your connections as opposed to staying home and connecting artificially.
Right. Well, and I will also say that one of the things that I also was heavily involved in was I was part of an online community before social media. That was for people in different phases of eating disorder recovery. And it was worldwide. We only connected online. That was around 2008 that I was part of that community.
I am still connected to people that I met through that community. And I would say that that friendship with that person is real, even though I've never seen them in person. Because of the relationship I've built.
We need to build that community for caregivers. And I know their pockets of them.
Yeah, so, you know, there's that, you know, I do want to say that I also have relationships with real people in my life, but I don't want to discount the value of an online friendship, especially when you like come out of the actual like just talking in a chat forum, right? But you're like,
Speaker 1 (47:52.376)
hey, let's talk on the phone. And then that's more real life. there's different ways that you can use the different technologies, including telephone, to connect with people, because that's a technology too. So that's one thing. And then with these AI tools that are coming out, I would say as someone who has worked in technology and has worked with AI tools,
And is, I'm by no means an expert, but I am familiar with them, if that makes sense. That I think there's a tremendous opportunity for us to use, caregivers to use AI tools to supplement and delegate things that
that are possible to delegate, okay? Now, just because we can delegate, it doesn't mean we want to or should, but one thing is, you can, I also think about this is like, sometimes we're like, what, AI tools for caregivers, that's great. And there's some, and I even think about there's like,
I don't know the name of it, so I apologize, but there's a remote out there that like you can, you know, it's a TV remote. That's how they market it to caregivers. Like you can now change your parent, turn on your parents' TV when they're calling you and telling you, but it's more than that. It allows you to like see what, you know, chat with them, see what's going on. It has a lot of like this. Control the lights maybe, Yeah, like there's different things. Yeah, it's great. And so that kind of stuff is,
win though, right?
Speaker 1 (49:47.522)
fantastic. And I love that kind of tool. And I think the more things like that that can come out are like the automatic pill dispenser things that, you know, will not allow them to get a dose before they need it, reminds them that there is a dose when it's time, that kind of thing, all of that stuff. And then of course, like you mentioned, there's more and more coming out and it's still early. So but there is going to be the opportunity for people to
create their own friend in AI and it's happening already. And so that can be a fun maybe thing, but it's something that you wanna keep your eye on. But I think like for the average caregiver, we're talking more about the remote and the medicine thing and maybe some sort of...
know, companion that can talk back to them like our Siri or our Alexa, right? You know, that has some sort of interaction even if it's like that. But also remember that AI can be used for those other things that you're doing that aren't character-oriented or task-related but are just more tasks on your plate. So I would encourage you to think about it like that too.
To be a better caregiver, you may need to offload some of these tasks that aren't caregiver related to AI so that you can have more time to do what you need to do as a caregiver. So that's how I think it's also gonna help caregivers.
I mean, seems from having read your book and correct me if I'm wrong, your mom was pretty sharp through all of this and cognitively on her game. I really felt those overtones. Obviously, there's a world of opportunities where cognitive decline is entering the equation and caregivers are facing that. And when caregivers need to be away,
Speaker 2 (51:52.83)
technology can engage in a process with someone with cognitive decline that actually potentially could use approaches that delay cognitive decline through engagement in certain strategies. And I'm very curious to see how that's going to emerge on the scene because that is a challenging... One thing is meeting all those needs and then at the same time dealing with
loved one or someone you care for who's got, you know, parallel cognitive decline as well as physiological decline, other areas require caregiving to increase intensity and further intensity. Jeanette, you previously mentioned the challenge faced by survivors of abuse who find themselves feeling forced into a caregiving role for their former abusers, such as parents or other family members.
Yeah. Could you elaborate on that particular challenge?
Yeah, I mean, the Facebook groups for caregivers will blow your mind what is going on with caregiving. I cannot believe it. I literally cannot believe what is happening. And that's why I mentioned, I haven't studied the laws in every state, caregivers are telling, they're being told in some states, it's your
this is your job, if you don't do this, you're gonna be taken to jail for neglect or reported to the Department of Children and Families. And sometimes they have been no contact with this person or they have very minimal contact. The secret, the elephant, I mean, I just was, and that is just, there's a million stories like that. So when you were like, what's the biggest,
Speaker 1 (53:52.246)
like that, that kind of crap is what's happening. it's just, it's so scary to
The intensity must just be, I mean...
you're washing that person's hair and then the other option is to squeeze tight around the neck. I'm not being light of it, but I'm sorry, like the trauma informed thoughts that must just flow through people and that just sort of auto-multiplies the trauma traumatic experience in real time all over again.
It's not.
Speaker 1 (54:34.382)
Well, and just, you know, as someone who was abused, I can tell you that being near the person who hurt you...
is it has only happened to me maybe 10 times in my life. It is a physical thing for my whole body. And can you imagine that being the person that you are tending to?
I don't know, you know, and there's.
your voice kind of freeze and just astonishment.
Yeah, it's anyway. yeah, that's big. That's a really big thing. And I think, you know, and I think in the episode I was listening to of yours, you talk about like, well, you know, we're givers. you know, we all want to, you know, there are people caregiving for loved ones that they do not want to care for. They don't want to do it. They didn't sign up for it. They don't want to do it. You know.
Speaker 1 (55:38.926)
Maybe there's a part of them that's like, well, someone is gonna do it, so I'm gonna do it, but I don't want to. And then there's other people that are physically like, you know, really don't want to do it.
sick at
We're not talking about doing the groceries. We're talking about full on caregiving and sheet changing and pillowcase changing and underwear washing and drool wiping and just giving of yourself in a way that you never would fathomed ever potentially ever being taken care of by that individual.
Yeah, so it's a very big...
you know, something that is just glossed over. Like we, you know, we're just scratching the surface in the caregiver community talking about like, you know, the dysfunctional family, that's kind of how I refer to it. Is like, you know, if you have a dysfunctional family and you think, you know, you got over it, but then you have to go back to that family unit and you have to deal with your brothers and sisters and your parents, it gets yucky.
Speaker 1 (56:45.19)
like we need to address that, like that's one huge thing also, but then there's that deeper, darker thing that is, you know, I'm not equipped to talk about, you know, a lot, but I know it exists. I've seen these stories and it's heartbreaking.
to
Speaker 2 (57:01.176)
And then the usual factors like marginalization and where you have clustering of these experiences, unfortunately, where, you know, family relationships and tensions may be in a compounded way being even more challenged just from societal issues like poverty and other things over the years, returning back to this can even make it all the more challenging. If you had a chance to look back at
yourself fifteen years ago, what would be one thing you'd tell yourself with what you know today?
Well, I would have started a lot sooner with giving myself grace. I would have been more proactive in setting boundaries with my mom when she was still, I mean, that was cutting it close, but she was still kind of able to tend to herself and be on her own for the most part.
I think I would have had more conversations with her about, because when we did have conversations, it was like, you're going to fill in the gaps. That's what we've talked about. That's what you're going to do. I'm going to do as much as I can do, and then you're going to fill in the gaps. What we didn't talk about was when those gaps became big, huge cavernous holes.
There's a difference between a crack in the sidewalk and a ditch. And so I think I would have had those conversations to say, let's get specific here with some of these things that we know are gonna happen because of the course of your disease and what it's doing to your body. That would have been on the caregiving side, what I would have done. then for the self care.
Speaker 1 (59:05.814)
It would have been not treating my body like an enemy that needed to be tamed or fought against and treating it with more respect and love, understanding that you can't hate your way into better care of yourself.
There's so much pressure these days to build the skill set, to build those habits. They can almost be ghost habits, right? If they're not informed by you, they're just things I should do, but as opposed to things that have meaning to me. it really seems like atomic habits need to be met with atomic purpose.
We've learned a lot from those resources and they're important and I've read them, I'm sure you have as well. But they can be overwhelming, especially when so much of you is being pulled in other directions and that you're left with a skeletal sort of energy reserve that you need to self-direct and the pressures that come from having to achieve at a super high level in your own...
self-care can be detrimental. that notion of grace and self-compassion as a caregiver is huge. And it really resonated with me when I read your work and
Certainly the fact that you chose that as one of the most important messages to tell yourself 15 years back, think, is proof of principle that there's consistency. If so many young individuals now who are going to be embarking on learning skill sets and building careers in caregiving,
Speaker 2 (01:01:10.302)
future nurses, future physicians, future allied health personnel.
I'd love to give you the floor to sort of say if you had to coach those individuals with everything that you know from the caregiver's experience and having been so often in the hospital setting with your mom, I think you mentioned the 35 hospitalizations in the last five years of her life.
Well, the last five years before she went to the nursing home, but yes. Yeah, there was this intense time, yes, for sure.
Not before she went to nursing home, okay?
You must have interacted with a lot of health personnel and probably have learned advice that you could offer caregivers everywhere of like the top 10 things to do to engage. But if you had some messages you could give to our listeners who are future healthcare, they were the future of healthcare, the next generation and how to interact with caregivers and families of patients they're looking after.
Speaker 2 (01:02:12.492)
What sort of points would you share with them to empower them as they're learning to be professional caregivers? Because it's such a two-way street between not just understanding the patients and the physiology, but the other elements of the dynamics. And caregivers want the best for their loved ones who are in distress, who are ill, who are hospitalized. But there's so much understanding that
that can be developed mutually in terms of skill sets between family members and who are caregivers and allied health personnel, et cetera. Where would you say the big wins are in what young future allied health personnel and physicians, nurses need and would benefit from knowing?
Well, first of all, I want to say that to me, the people that worked as professional caregivers, doctors, surgeons, nurses, CNAs, were never the enemy for me and my mom. They were some, they were people that we were, that were highly thought of by us. And we thought of them as
the people that were coming to save us or to help us. And so I and my mother taught me this, treated them as such. Now I will say to those people who are going into some form of healthcare field, one of the things that was very important to my mother was that she was heard
and understood. She was very aware that her disease was, you know, a super weird one on everybody. It was like maybe a half of a lecture in one class was when, you know, how people learned about it in school. And so she would always want to talk to the different individual people that were caring for her. And the people who allowed her the time to do that,
Speaker 1 (01:04:34.286)
even if they did already know all about it, it went a long way to making her feel seen and heard and understood. And that went a long way to making her feel comfortable about the situation she was in. And so I would encourage professional caregivers to even, yeah, I know you don't have time and sometimes I'd have to be like, know, roll it up, know, speed it up a little bit. know, don't have all day.
You know, because these, you know, I understand that, you know, you have another room to go into and another thing to do. But even if you give the time you have, which may only be 30 seconds or a minute or three minutes to let them know that you're listening and that you're interested, it goes a long way. And another thing, and I've heard this from other caregivers as well. I don't need you to remember my name as the family member.
But I love it when you know that I'm Mary Jane's daughter. And so that comes more into play with the, when you're in heavy rotation at the hospital, right? You're going all the time. Eventually they did know my name. They helped me celebrate my mom's birthday, because the year after year she was there. We celebrated holidays together, those kind of things. But it's...
I don't, and another thing I would say is most caregiver, most families don't expect perfection. They just want you to show that you care. So even if something isn't perfect, and sometimes you just have to say, and you know, especially in, you know, in our situation, you just have to say, yeah, this is not an ideal situation that we're in right now, but this is where we are, and this is how I can help right now, and this is how I can work to make things better next time.
We get it for the most part. I mean, there's some people that are gonna be, you but for the most part, families are gonna understand that big systems, big hospitals, you know, they have, you know, the procedure is what? Just tell me what the procedure is. I, you know, cause I might go, why can't I, you know, why can't you do this for my mom right now? Well, just tell me why. Yeah, it would make, it would seem to make sense if I just did it this way, but I'm not allowed to do it that way.
Speaker 1 (01:07:01.292)
I have to do it this way. I hear what you're saying, but this is how I have to do it. Okay, it's not your fault. Okay, got it. You know.
In this day and age when people are choosing to leave the healthcare professions because they're functioning in managed environments that are just suffocating and not allowing them to be who they feel they need to be as physician and nurse, allied health personnel, that's certainly some really welcoming thoughts and I only pray that more and more people feel that way.
The flip side of from guilt to good enough is that that same thinking could actually apply to professional caregivers, to the nurses, to the physicians who are working in a system that by its constraints and whether it's profit orientation or lack of supplies or inadequate this or that, they're not able to perform at the best level they feel they could as professionals.
Right. They at one point need to accept good enough as well. And that's a whole new exercise and a whole new concept. I'm not sure has really been explored in healthcare, but what is good enough in healthcare? Yeah. And when you're functioning in a system that doesn't allow you to achieve the ultimate gold standard, how much are you going to beat yourself down from patient to patient that you're, it's not you who's not performing. It's you're performing the best you can within the constraints of
the system around you and you can appreciate that the amount of guilt, if not...
Speaker 2 (01:08:44.962)
dissolved could just be, you know, bring care professional caregivers to a state of overwhelm. Things are certainly changing.
Yeah, one of the things I think too is very important is I think whenever we work in a system that isn't working.
Mm-hmm.
it can be frustrating. I used to be a public school teacher, so, you know, I get it. Yeah, so, but one of the things that I wish I'd known then, I did not, I ended up quitting because I couldn't stand it. you know, one of the things that I really appreciated, and I did as a family member, but I also witnessed people that worked
So you're a caregiver there too.
Speaker 1 (01:09:32.248)
for the nursing home where my mom was, whatever, is not everybody has the decision-making authority that you encounter as a loved one, as someone whose family member is being cared of. So the CNA that's coming in, they really don't have any control over pretty much anything. They're doing the best they can. But there's probably a...
a council, a board meeting, a board, a administrator. There are people in there that do have decision-making ability and can change parts of the system. And those are the people that you want to, as a caregiver, you want to be friends with. And if you are in a position, as, you know, if you find yourself working as a professional caregiver and you have the ability to be on these, in these, you know,
patient advocacy groups or maybe just advocating for better work conditions for your fellow employees, that kind of thing. Do those things. Don't get disheartened and be like, you know, just more system stuff. It's just more, know, sometimes being in the system can help you change it. And I was, as a caregiver, so I'm switching back and forth between professional caregivers.
But like one of the things that I really thought was helpful for me as a family caregiver was to make sure that the people caring for my loved one from the front office to the person who cleaned the toilets, that I was appreciative of what they were doing. They were part of my mom's care team and I appreciated everything they were doing. And if there was any way I could help them, let me know. And that allowed me to get in rooms with
administrators with facility people, with things like that where I was able to share the perspective from a patient or a family member. I remember after my mom died, I got a phone call, I was in contact with them in the immediate, but then I got a phone call a couple of weeks later from the administrator and she said, we just wanted to reach out.
Speaker 1 (01:11:59.342)
We miss you because of course I was there. We miss you, but also we want to know is there anything we can do for you? And I was able to say I was blessed enough to be able to say no, I could not have asked for a better situation. You did a great job. I said, the one thing I will say is the chair I had to sit in for 48 hours before my mom died was extremely uncomfortable. Is there any way that we could work on that together? And so now we're working on, you know,
I'm gonna be able to help them get some comfy chairs for those families who are going through that end of life. And so that's just one of those ways where I was able to alert them to a problem that they did not know there was. They were able to alert me to the situation they were in and we were able to come together to solve a problem. Does that make sense?
Sounds like a nice little legacy moment.
Yes, the Mary Jane Blanchard comfy chair.
When I hear your story, I can't help but think that what really empowered you in your relationships as being your mom's daughter and being the caregiver at home, but also her champion while she was hospitalized and while she was unwell, is that the power of kindness goes a long way. I mean,
Speaker 1 (01:13:30.144)
Mm. Well, in the South, we say you get more flies with hunting, so, you know.
And the other thing is that if you actually take a breath, it's not difficult. Probably one of the most naturally flowing emotions and ways to communicate even under challenging conditions when your loved one is unwell. But I can speak from my own experiences. know, the classic example being, you know, taking the pager at five o'clock on call and finding out at 530 there's a meeting in the ICU about some major decisions that need to be made.
with words like transplant floating around and other things and you're just walking into that and you can walk into a room full of tension and angst naturally expected and understandable but kindness to just sort of start the discussion is one of the most powerful tools. I think back to some of those experiences and they're certainly something that I've turned to often and I imagine you did as well.
I have had the ability for years to have hope that things can get better than they are. And I think that served me well.
Hope is such a powerful motivator for getting involved and getting involved in advocacy as well. Are you involved in any advocacy activities now that, I maybe it's a bit fresh. And by that I mean, you've been through a lot in the last six months. Mom's passing and I'm sure carrying out a lot of introspection and sort of
Speaker 2 (01:15:14.218)
reflecting on the journey, but do you see a future in advocacy? there targets that you now, I mean, you've actually identified a wonderful micro target and you've already achieved success. So people will be seated more comfortably during difficult times.
So I've never, so it's interesting because my mom, you know, I watched her care for people her whole life too. She was a guidance counselor, she was a teacher. And one of my first memories, so one of my first memories of my mom after she and my dad divorced, it was just the two of us. I remember being in a picket line with her.
My god, my dad was too.
Speaker 1 (01:16:02.83)
for picketing for better pay for teachers, right? So it's something that I've watched her do her whole life. And then even like when she was homebound, she was still like, this poor person, they need XYZ. I'm like, mom, you know, don't have to keep, you know, just focus on you. And she just couldn't and, you know, she shouldn't have, but you know, she did the right thing. there was this...
this sense of there's always somebody out there that could use.
your help. And now as someone who also advocates for taking care of oneself, there's a balance there of, you know, when is it time to give, when is it time to receive? I think both of those things are important.
And so right now I'm focused on, you know, I talk about, you know, how caregivers hate to hear about, you know, don't pour from an empty cup and fill your cup first and all this business and we just can't stand it. Yeah, that don't give me start, you know, and it's like, yeah, you can't pour from an empty cup and you can't pour from a broken one, right? And so, you know, I had to work to
Let's go.
Speaker 1 (01:17:25.95)
mend my cup before I was able to give to my mom in a way that was healthy for both of us, right? And then of course, after she passed away, it got a little chipped again. And so now I'm working on mending those broken pieces of my heart and, you know, in some cases my body could have some health issues. But when it is time, when I feel like I have mended
One of the places that I would love to advocate or the groups I would like to advocate for, and there's a couple of nonprofits out there.
There's a, we talked about the rise in caregivers, you know, earlier and, you know, aging population caregivers. Well, there are caregivers who are children and there's a nonprofit, I think it's called the American Association of Child, of Caregiving Youth, American Association of Caregiving Youth, I think is the name of it. And they help caregivers ages eight to 18 who are caring for.
loved ones. And as someone who was there, I'm like, I'm there. Those are my people. no caregiver has the resources they need, but I'm especially passionate for helping children that were just like me, that were just trying to do a good job.
and take care of their loved ones, whether they're disabled or aging. And so I think that's where I'm gonna probably lean in. But that's breaking news. I haven't articulated that out loud, but that's something that has been tugging at me is, I'm particularly cut out for that, that work. And so I think that's something I feel passionate about. And then also I think,
Speaker 1 (01:19:39.68)
Another place that I want to speak more into is the relationship between professional caregivers and the family caregivers of the people they serve. I think that's something that we could do a lot of work in and it would be very beneficial for both the professional and the family caregivers to understand that we're not on two different teams here. It's the same team.
Definitely something to explore and would be a great other episode to compare notes on. You know, I have no doubt having read your book and understood your story that you will succeed at this next chapter. I think many people will succeed reading your book and really hearing your message, which is so refreshing from
what I've heard recently and it's just, it's a break, it's a breakaway and it's, I just wanted to congratulate you. If your book were to be read by a caregiver 50 years from now, what single lesson do you hope would still ring true then?
Speaker 1 (01:20:52.974)
Well, any caregiver that reads my book, what I want them to know, whether it's tomorrow or 50 years from now, is that they have done enough, they are doing enough, and that they are enough.
That's the lesson. If you're a caregiver that cares enough to get a book about caregiving or listen to a podcast about caregiving or wonder if you're doing a good enough job caregiving, you are. You are. You're doing it. You're doing it. You're enough. You're doing enough. You have done enough. You're enough.
I caregivers everywhere get to hear your message and I think it's a pretty universal message and if we all abide by it and internalize some of it, people will be in a healthier place because caregiving is not easy. But it can be made easier and it can be rewarding, can be uplifting and you can rediscover relationships, much as you described as that special mother-daughter relationship that still had its place.
while you were caregiving as well.
was the greatest gift of the last couple years is learning how to just be her daughter again. And then as our time wound down, it was comforting to know that we had healed some of the relationship that we had lost.
Speaker 2 (01:22:27.886)
think that's a befetting conclusion to our talk today. I want to take the time to thank you for joining us. We really appreciate the mindset that it takes to be a caregiver no matter what you do. And it needs to be pliable. It needs to be adaptable. It needs to be self-reflective. And I think your resources certainly champion that at the self-caregiver.
Definitely encourage our listeners and subscribers to check out at the Self-Caregiver on Instagram. And I know you're on TikTok as well. We've got the Guilt to Good podcast, which is authentic, kind of rejuvenated a little bit too, which I'm sure is going to reflect a next chapter. And I look forward to seeing those episodes. Just wanted to take the time to thank you for
believing in our offering and actually being here today. And I look forward to hearing back from you and keeping in touch.
Yes, thank you so much for having me. This was a great conversation. I love that we got to deep dive into a lot of these topics because it's very hard to do them in small sound bites. So thank you for opening up the space and time for us to dive into these things.
Well, that wraps up our episode this week. Thank you for being here. We want to hear what you have to say. Leave us whatever feedback you feel. Thanks for being here. We'll check in next week and until we meet again. Before we wrap up, I wanted to remind you of something important. The conversations you hear on this podcast are here to inform, to support.
Speaker 2 (01:24:04.632)
to spark reflection. not a substitute for professional medical advice, care, therapy, or crisis services. Listening to this podcast does not create a doctor-patient or caregiver-client relationship between us. If you're facing a medical concern, health challenge, a mental health challenge, or a caregiving situation that needs guidance, I encourage you to reach out to a qualified professional who knows your story. If you're ever in crisis, please don't wait. Call your local emergency number or recognize Crisis Hotline right away. You deserve real-time help and support.
The views you hear on this show, whether from me or my guests, are our own. They don't necessarily reflect any organizations we work with, are part of, or have worked with or been part of in the past. This podcast is an independent production. It's not tied to any hospital, university, or healthcare system. Thank you for being here, for listening, and most of all, for taking the time to care for yourself while you continue to care for others. I look forward to hearing.