December 19, 2024 • 35 mins
Lynn Abaté-Johnson joins Lisa to discuss the breadth and complexity of our human feelings as caregivers, particularly at the holidays. We reflect on the paradox that embracing difficult emotions can bring more ability to adjust to them, live with them, and notice the more pleasant ones which can exist right alongside them.
After being a primary caregiver for her mom for over six years, International Best-Selling Author & Speaker, Lynn Abaté-Johnson, understands the typhoon of emotions and responsibilities that come with caring for a loved one. Like most family caregivers, Lynn juggled caregiving duties with a full-time career. In her daily life, she’s a global community builder and business consultant. Lynn wrote the book, “Out Of Love: A Daughter’s Journey With Her Mom To The End” to normalize and de-stigmatize what many families may take for granted or miss in their roles as caregivers. She offers practical tools & resources, along with encouragement for other family caregivers, with the goal of bringing light to the dark and peace to the soul.
Get a free chapter of the book here!
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
After being a primary caregiver for her mom for over six years, International Best-Selling Author & Speaker, Lynn Abaté-Johnson, understands the typhoon of emotions and responsibilities that come with caring for a loved one. Like most family caregivers, Lynn juggled caregiving duties with a full-time career. In her daily life, she’s a global community builder and business consultant. Lynn wrote the book, “Out Of Love: A Daughter’s Journey With Her Mom To The End” to normalize and de-stigmatize what many families may take for granted or miss in their roles as caregivers. She offers practical tools & resources, along with encouragement for other family caregivers, with the goal of bringing light to the dark and peace to the soul.
Get a free chapter of the book here!
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
[music]
(00:10):
I'm Lisa Chutey. Welcome to Love Doesn't Pay the Bills.
My guest today wrote a book that she wishes no one needed,
and yet it would have come in handy for her.
At the time her mom was diagnosed with stage 3C
Ovarian Cancer in 2011.
The book is Out of Love, a daughter's journey with her mom to the end.
(00:31):
After being a primary caregiver for her mom for over six years,
Lin-Abate Johnson understands the typhoon of emotions
and responsibilities that come with caring for a loved one.
Like most family caregivers, Lin juggled caregiving duties
with a full-time career as a global community builder and business consultant.
Lin wrote the book Out of Love, a daughter's journey with her mom to the end
(00:52):
to normalize and destigmatize what many families may take for granted or miss
in their roles as caregivers. Welcome Lin and my condolences on the loss of your mother.
Thank you, Lisa. I really appreciate you inviting me today
and including me in your wonderful podcast.
Yeah, I'm happy to have you.
I'm already a fan.
(01:14):
Thank you. I would love to start with a brief overview
of those caregiving experiences that you had with your mother.
Sure. Yeah, tell us about that.
Yeah, as you mentioned, my mom was diagnosed with stage 3C
ovarian cancer in 2011 and I spent almost the whole first year
(01:37):
making it all about me.
Like, what am I going to do with my mom?
Who am I going to call when I'm sad?
Happy?
Who am I going to share meals with?
Because my mom was a big foodie and it was just,
I was spinning emotionally and it's one of the reasons
why I wrote the book is because I knew if it was going to take me down
(02:00):
like into all of those emotions that I had never experienced,
especially the fear and the dread of losing my mom,
I was going to need some tools that were practical tools
that could help manage the day-to-day details.
As you know, there's so many day-to-day details of being a family caregiver
that's untrained, unpaid, and just a deer in the headlights.
(02:25):
So, fast forward to she ended up beating all of the odds,
to find the odds for her diagnosis and she made it a little over six years.
Yeah.
That's fantastic.
Yeah, it was funny because even during her treatment,
(02:45):
her oncologist would say, "You know, you're as healthy as a horse except for this cancer."
She never got even a cold or, you know, we had all of these fears of her,
you know, laying around in the hospital bed and having emergencies
and side effects of the treatment.
She never even got pneumonia.
She did have other side effects,
(03:06):
but you know those things that you always hear about
and that you fear the person is going to either, you know,
die from their disease or they're going to get some kind of a secondary thing
and die from that.
But that never really materialized.
So, she was, it was fortunate in a way that she didn't go so suddenly.
And I know for a lot of people, that is at the case.
(03:29):
And for example, my husband's father died,
all of a sudden of a heart attack at age 55.
So, there was no caregiving there at all, right?
And I'm also keenly aware that not everyone has a mother or a mother figure,
you know, to have that relationship with.
(03:52):
And so, I want to get that out right away.
Like I feel for those people who didn't get that opportunity the way that I did.
So, I'm very grateful.
Let's go into it.
What's wonderful about your mother?
That was my next question.
It was wonderful about my mom.
It's, you know, she was very feisty, very gregarious.
She was charming.
(04:13):
She was kind of somebody that people gravitated towards.
She was all about children, raising children.
I'm the oldest of five.
And she had 10 grandchildren at the time that she died.
And she was always about the children.
So, I often say that when you, if you see me,
(04:35):
I'm kind of a watered-down version of my mom.
So, I have some of that, some of that gregarious kind of pragmatic
and, you know, high emotion.
And always on the go, always active, high energy style person.
(04:55):
I would have said I was type A before.
And my mother was that way.
And people would come to her for advice,
especially when we were all babies.
And we were growing up in an apartment complex in Los Angeles,
while my dad was at school at UCLA.
(05:16):
And my mom would be the go-to person for all of the young mothers,
all of the neighbors who were having babies.
And she didn't let anything really scare her.
She seemed almost fearless, which translated pretty well
into her cancer diagnosis.
And where she became very pragmatic.
(05:38):
And she said, "Okay, you know, we're going to
systematize this."
And so, out of her training, you know, my whole growing up years,
I really feel that my mom trained me to step up
and be the family caregiver that I ended up being.
(05:59):
It sure sounds like it.
It sounds like she was a guide for people in the neighborhood
who were at least caregivers of young children,
maybe not medical caregivers.
Yeah.
Yeah.
And it sounds like a really important pillar for, you know,
center of strength for a lot of people.
So, that's pretty amazing.
(06:23):
Mm-hmm.
And what experiences and ideas
in Out of Love would people tend to brush over our sugarcoat?
What are some of the things that
might not be so pretty that you're talking about?
I'm so glad you asked, Lisa.
Yeah.
(06:44):
I think there's a lot of shame and guilt and stigma around
becoming all of a sudden a family caregiver
with all of the different personalities that the family
brings.
And me being the oldest of five, you know, we were no exception.
The beautiful part was that my mother knew us really well.
(07:08):
And she knew that, and there were four of us that lived
locally to her, you know, within 10 or 15 minutes.
And so my mom instinctively delegated responsibilities to us.
And, you know, some of us took charge in one area
and some of us took charge in another area.
(07:30):
For me, I was responsible for all of the kind of
admin things, you know, all of the practical, pragmatic,
logistical things.
And so in the book I write about that emotional piece and then
the logistical piece.
And I even provide PDFs and ideas on ways that people can,
(07:56):
in a way, I joke about it, but it really is that we kind of turned
my mom's diagnosis into a business plan
or a strategy to try and get through the day by day
as best we could.
So that was one thing.
I think another thing that I learned through all of those years,
(08:17):
six plus years, was that I was not trained as well by her to take good care of myself.
So my mom was very self-sacrificing, raising five kids on
hardly any money at the time when we were little.
When my dad was a student and she was not working outside the home.
(08:40):
She had enough work to do with five babies within seven years.
There was that sacrificing herself for the betterment of everybody else,
putting her own needs last.
And I think that that's some of the, if I were to say,
(09:01):
I mean, some of the dysfunction that I experienced as a caregiver
is that I was not taking good care of myself at all.
So the irony in the paradox there is that, you know, here's this mother of mine
that I desperately want to save if I can, because at one point, you know,
(09:24):
I thought, oh, well, if we just do this, if we just do that,
then we can make life easier. We can save them.
And really, ultimately, we don't have that kind of control.
And so the irony is that I was trying to control and save and fix and heal her while my own nervous
system was shot. I wasn't sleeping well. I was eating terribly. There was no nutrition in my life.
(09:51):
And yet we were feeding her all the nutrition, but I was binging on sugar, because that was my go-to,
that was my default. And I carried a lot of weight literally and figuratively.
So back then in 2011, I was 60 pounds heavier than I am today.
And it was little, it felt like the weight of the world was on my shoulders. And I know that my mom,
(10:17):
even though she was very small in stature, very tiny woman, like I towered over her.
She was like up to here on me, which I'm just putting up to my ear. Yeah, she was small,
but mighty as we say. Sure. Sure. I know that. That way to be. I am very short myself.
(10:38):
A lot of us as women, we get taught these things. We get taught to neglect our own needs.
In favor of everybody else. And we get taught to over give cheerfully, right? And just keep a happy
face on it no matter what. And to me, I see a lot of that kind of teaching as really gaslighting and
(11:09):
really, you know, training us to ignore our own feelings and not even express our own feelings.
Needs once. How do we, especially at the holidays, that kind of stuff can be really prevalent,
(11:31):
that kids are home from school. There's extra caregiving time. And a lot of times this women were
expected to automatically do all the holiday things, plan the parties, put up the decorations, all of that.
And have all this extra workload while being happy about it and cheerful about it. And,
(11:53):
yeah, for some people, including family caregivers, including women family caregivers, the holidays
really are joyful and fun and exciting and that's awesome. And at the same time, for a lot of us,
there's either a lot of mixed feelings where we also have, you know, just overwhelm and feeling
overworked or we have grief that comes up particularly at this time of year or some of those other
(12:17):
emotions that we can feel at the same time, actually, as maybe being happy at the holidays and
enjoying Christmas music or things like that. How do we, how do we stay aware, even of our own
authentic feelings? And how do we keep saying no thank you to people wanting to tell us how we should
(12:39):
feel? Yeah, that's a great question because really it goes back to leadership and our own leadership.
And I always say that my caregiving years provided a transformational leadership journey for me,
whereas previous to that, I didn't really understand the term paradox. And new things can be true
(13:01):
at the same time. And so I have spent the year since I wrote the book and, you know, since the book has
come out learning about the value of embracing that paradox. And so I really think that's important.
As we get to know ourselves better and get more curious about our own journeys, then we can
(13:25):
address those things that come up and they seem what I used to think of as contradictory.
Like that can't be right because this is true for me. And so embracing paradox has been a really
big deal for me and also discernment. So I saw my mom being very energetic, very into everybody else's
(13:49):
journeys and getting involved into everything everybody else was doing. And yet she was ignoring
often her own needs. And so I think one of the gifts, if I might say, of her journey and mine was to
understand and learn that we can't do it all and that we are human and we are not machines.
(14:17):
And my mantra that I started to incorporate during those years was, this is not mine to carry.
This is not mine to carry. So that's how I would find a popular saying not my circus, not my monkeys,
that kind of thing. Yeah. That's really how my discernment came forward. And it's still I'm still
(14:41):
learning that discernment about let's look at this situation, whatever it is. And let's determine
what's mine to carry and what I can step back from. And so I've learned over those years and now again
still learning how to take a pause, how to take a time out. And I don't have to have all the answers
(15:05):
right in this moment. And I can ask for help, which is something again that I was never taught to do.
So my mom was very in charge. She was helping everybody else. And yet she never learned to ask for help
for herself. And then she not better at it during her cancer journey. So I would say that was a win.
(15:27):
Yeah. That she finally was able to receive care for herself. Yeah. Yeah. Which can be super,
could be super sweet. And and actually really valuable experience for all of you in the family.
It was. I mean, for me, I felt honored and privileged that we were in that first of all physical
(15:55):
proximity. So she had moved out after she retired in Michigan. She had moved out to California to live
near most of us. And she, her house was around the corner from the her grandchildren's school.
So they would walk to her house after school and she would slice up oranges and give them snacks.
(16:16):
And then they would hang out and read and you know, whatever little kids did after school, they
were doing it at their grandmother's house. And it was a very, very sweet thing because they also
saw her during those six years, you know, sometimes very up and sometimes very, very low to the point where
when she was speaking, she was only speaking in a whisper because, you know, she was going through
(16:41):
treatment and it was really taking a lot out of her. So she didn't have the capacity to even relate
with us as she had in the past. So talk about a shock and learning what it means to be in a state of
grace. My mom was an example of that. She was showing us what that meant to be in a state of grace and
(17:04):
really, you know, allowing her body to do what it needed to do to process all of the chemicals,
all of the treatment, you know, the side effects, all of that. We're going to take a break now.
Please stay right here and we'll be right back.
(17:24):
Thank you for sticking around. We continue our conversation. So yeah, it keeps coming back for me
to being willing to embrace all of humanity, like in each of us, right, that as a caregiver, I can do
a lot of things for for other people and I do, particularly my daughter in my case, all day long, lots of stuff.
(17:51):
And at the same time, I've got to have downtime at some point. I've got to crawl into the covers and
read some novels and rest and I've got to literally sleep and I've got to eat good food and I've got to
move my body upside a bit and I've got to go to the doctor myself sometimes and I'm sure as I get
older that'll become a lot more prevalent and there will be something where I need care. And I think
(18:18):
you know, we don't we have this way of splitting people up and not not wanting to see us as whole human
beings each. The care recipient has strengths and abilities and things they're contributing. Your mom
clearly continued to contribute a lot of things to the people around her and by her example of how she
was living and her approach to her illness and then you know, the person giving care does have needs,
(18:49):
limitations and real, you know, ways that they already need to be cared for besides the fact that
eventually they might get all themselves. And it keeps coming back that same picture for me.
Just like also embracing all of our feelings, right? We might feel in thousand things at once. We
(19:15):
might feel really happy about something that's happening and oh, there's wonderful music and
pretty lights and and something's really nice and then at the same time feel like, oh, I'm sad that
my loved one doesn't participate in this the way that they used to or even the way I imagined they
(19:36):
would or or I'm sad that, you know, I'm so far from family and I it's too difficult for me to go travel
to them or I'm feel overwhelmed and I feel like there's too much to manage, you know, just simple
medical needs or not simple. The medical needs alone, you know, for some of us day to day
(20:02):
life just getting through the requirements of a day for a loved one is enough and to throw on top of it
and you know, that we're gonna plant a party, go to a party, wrap presents, whatever any of that is
just unthinkable at sometimes and I think for all that to coexist is is being human. It is. Yeah.
(20:29):
It is for sure. I remember thinking, you know, how can everybody be going on as normal,
nor quote, normal through the holiday season when my mom is dying at home? How can that be? Like,
I had tunnel vision and that's all I could see is, you know, she's in a state of decline and some
(20:50):
holidays were great but it really taught me that I needed to embrace the moments and later on when I was
getting grief counseling after she died, I got grief, grief counseling, which I highly recommend. It was
through hospice and it was amazing and the grief counselor, which I didn't even know this was a thing
(21:11):
but she said, it sounds like you've been doing some anticipatory grief. I didn't, I never even thought of
that but I did. I said to myself, Lynn, this is my mantra, no regrets. When mom goes, you're gonna have
no regrets and so not to kill myself and trying to help, you know, save her. No, wasn't that kind of
(21:37):
thing? It was to take these moments and embrace whatever I could out of them. I wrote in the book about
the, you know, Thanksgiving and how Thanksgiving and Christmas were my mom's favorite holidays.
She loved all the food and she used to just scurry around the kitchen and she would never sit down
but guess what? When she was forced to because she didn't feel well, then Christmas and Thanksgiving
(22:03):
became a whole new ballgame and we adjusted for whatever capacity she had and I remember sitting
there thinking, okay, Lynn, embrace this moment, like whatever bugs you about mom right now,
just let it go because this could be the last one and it was like that for any occasion, really,
(22:24):
birthdays, holidays but these are milestones in our lives and as we're caring for loved ones that
previously we took for granted and now there's no way because of my mantra, no regrets. I refuse
to take any other moments for granted. Even those things that bothered me about her, I would embrace
(22:45):
those as well and I would think to myself, you're going to miss this when you're gone as irritating as
it is, you're going to miss this when she's gone. It's part of the experience and probably no two
people ever have a purely blissful, like, relationship love everything about you kind of relationship, you know,
(23:05):
it might feel like that in honeymoon stages of a romantic relationship or something that's not
going to last very long from anyone I ever seen but I think, you know, yeah, that's,
there's this fine line between embracing that whole experience and yeah, flipping back into maybe
(23:28):
that being like a gaslighty thing where you're like, I'm going to put on the smile because
mom's still here and what's, how do you know which one you, how you're, that you're actually embracing
the experience and feeling what you feel? I mean, you can't really know. I remember being so
(23:51):
cocky and thinking, you know, if this were me, I would do it this way. If I was the one that had cancer
or, you know, and I often think about this because that was my recovering control freak brain saying
you would do it like this and of course you'd have no way of knowing until a situation arises and
(24:14):
you are actually experiencing that, how you would be about it, what you would do about it. And so
writing the book for me was to normalize those things that I previously thought were true or that I
could control and then realizing that I couldn't and I want the reader to know that they're okay
(24:40):
and that they're not alone and these are all normal feelings and it's all okay. However, it hits you
at whatever time of the year it hits you. Yeah, whatever you're feeling, it's okay. That's something that I
will hope to, that I intend as a recurring theme here that does seem to come up, you know,
(25:01):
all part of being human. Absolutely. And nobody's perfect, your care recipient is not perfect,
you're not perfect, you know, and that's okay. There can be tons of love there, there can be
enjoyable moments, there can be meaning. I think another theme that came up for me during those years
(25:23):
and that I'm still working with is trust. So I really had to learn to trust my mom and her instincts
and when she was feeling well, she was the boss, she was in charge, she was giving order, she was
delegating responsibilities and then and especially since I wrote the book and I've had these years to
(25:46):
experience myself and my own leadership is to trust myself more and to trust my instincts and to
listen to that inner voice that usually is there's either some pain there or my body is talking to
me in some way and to really hone in and get more quiet and instead of trying to fix and solve and
(26:13):
put a band-aid on things really just again like I said earlier taking that pause and wondering
what's this about and what do I need in this moment right now and trusting that I know
what the answer is. So that's been really helpful. Yeah, it's kind of trust in yourself but also trust
(26:35):
in in your case your mom and in your your loved ones that they know what's best for them or they
know what they need as well. Yeah and and also trusting the process right so you know we enter into
as caregivers for whatever the care situation is whether it's you know something by birth or some
(27:01):
diagnosis or Alzheimer's dementia you know your kid God forbid gets in a motorcycle accident and has
to have 10 million surgeries and goes on for years it is all kind of embracing what you don't know
embracing what can come up embracing the last minute something embracing some dysfunction
(27:28):
because there's you know kind of how we think and then how we act out from what we think
and then there's what's really happening what's being able to identify and kind of articulate
what's going on and when we can learn to articulate what's going on we can make all of the difference
(27:51):
in almost any situation not that we can control it but that we can name it and move from there with
love and with our own humanity very much intact and in the forefront. Yeah, there are so many things
that get better when you when you're honest and real about them right if I have glasses if I
(28:17):
went around saying my vision's great lololaw I might run into a lot of problems for quite a long time
and yet as soon as I you know acknowledge no I can't actually read that writing right there it looks
you know blurry and I get the glasses and accommodation right that we're all very comfortable with
(28:43):
and very familiar with then you know I can do all sorts of things safely and and well and I think a
lot of life is is kind of like that like you get the right things only start to be able to be put
in place when you're honest about them and when you acknowledge your ease your feelings your
(29:05):
your actual preferences then you can start building your life around that exactly I love that
example too Lisa because I I did that to myself I tortured myself for a couple of years and I
needed glasses I needed to be able to read and to see up close and I was just saying to myself no
(29:26):
no no you're you're fine you could just hold it further away you know at a certain point my arm
could not get any longer yeah and that's one that so many of us go through with age yeah we're very
familiar with and yeah you know doesn't have the quite as much stigma or anything around it as some
(29:48):
accommodations do yeah what I love about the lessons that we learn is that I always think about a
game that my nieces and nephews would play well my siblings would have them do it like sitting
around the dinner table at the end of the day and every person would go around and
[music]
(00:10):
I'm Lisa Chutey. Welcome to Love Doesn't Pay the Bills.
My guest today wrote a book that she wishes no one needed,
and yet it would have come in handy for her.
At the time her mom was diagnosed with stage 3C
Ovarian Cancer in 2011.
The book is Out of Love, a daughter's journey with her mom to the end.
(00:31):
After being a primary caregiver for her mom for over six years,
Lin-Abate Johnson understands the typhoon of emotions
and responsibilities that come with caring for a loved one.
Like most family caregivers, Lin juggled caregiving duties
with a full-time career as a global community builder and business consultant.
Lin wrote the book Out of Love, a daughter's journey with her mom to the end
(00:52):
to normalize and destigmatize what many families may take for granted or miss
in their roles as caregivers. Welcome Lin and my condolences on the loss of your mother.
Thank you, Lisa. I really appreciate you inviting me today
and including me in your wonderful podcast.
Yeah, I'm happy to have you.
I'm already a fan.
(01:14):
Thank you. I would love to start with a brief overview
of those caregiving experiences that you had with your mother.
Sure. Yeah, tell us about that.
Yeah, as you mentioned, my mom was diagnosed with stage 3C
ovarian cancer in 2011 and I spent almost the whole first year
(01:37):
making it all about me.
Like, what am I going to do with my mom?
Who am I going to call when I'm sad?
Happy?
Who am I going to share meals with?
Because my mom was a big foodie and it was just,
I was spinning emotionally and it's one of the reasons
why I wrote the book is because I knew if it was going to take me down
(02:00):
like into all of those emotions that I had never experienced,
especially the fear and the dread of losing my mom,
I was going to need some tools that were practical tools
that could help manage the day-to-day details.
As you know, there's so many day-to-day details of being a family caregiver
that's untrained, unpaid, and just a deer in the headlights.
(02:25):
So, fast forward to she ended up beating all of the odds,
to find the odds for her diagnosis and she made it a little over six years.
Yeah.
That's fantastic.
Yeah, it was funny because even during her treatment,
(02:45):
her oncologist would say, "You know, you're as healthy as a horse except for this cancer."
She never got even a cold or, you know, we had all of these fears of her,
you know, laying around in the hospital bed and having emergencies
and side effects of the treatment.
She never even got pneumonia.
She did have other side effects,
(03:06):
but you know those things that you always hear about
and that you fear the person is going to either, you know,
die from their disease or they're going to get some kind of a secondary thing
and die from that.
But that never really materialized.
So, she was, it was fortunate in a way that she didn't go so suddenly.
And I know for a lot of people, that is at the case.
(03:29):
And for example, my husband's father died,
all of a sudden of a heart attack at age 55.
So, there was no caregiving there at all, right?
And I'm also keenly aware that not everyone has a mother or a mother figure,
you know, to have that relationship with.
(03:52):
And so, I want to get that out right away.
Like I feel for those people who didn't get that opportunity the way that I did.
So, I'm very grateful.
Let's go into it.
What's wonderful about your mother?
That was my next question.
It was wonderful about my mom.
It's, you know, she was very feisty, very gregarious.
She was charming.
(04:13):
She was kind of somebody that people gravitated towards.
She was all about children, raising children.
I'm the oldest of five.
And she had 10 grandchildren at the time that she died.
And she was always about the children.
So, I often say that when you, if you see me,
(04:35):
I'm kind of a watered-down version of my mom.
So, I have some of that, some of that gregarious kind of pragmatic
and, you know, high emotion.
And always on the go, always active, high energy style person.
(04:55):
I would have said I was type A before.
And my mother was that way.
And people would come to her for advice,
especially when we were all babies.
And we were growing up in an apartment complex in Los Angeles,
while my dad was at school at UCLA.
(05:16):
And my mom would be the go-to person for all of the young mothers,
all of the neighbors who were having babies.
And she didn't let anything really scare her.
She seemed almost fearless, which translated pretty well
into her cancer diagnosis.
And where she became very pragmatic.
(05:38):
And she said, "Okay, you know, we're going to
systematize this."
And so, out of her training, you know, my whole growing up years,
I really feel that my mom trained me to step up
and be the family caregiver that I ended up being.
(05:59):
It sure sounds like it.
It sounds like she was a guide for people in the neighborhood
who were at least caregivers of young children,
maybe not medical caregivers.
Yeah.
Yeah.
And it sounds like a really important pillar for, you know,
center of strength for a lot of people.
So, that's pretty amazing.
(06:23):
Mm-hmm.
And what experiences and ideas
in Out of Love would people tend to brush over our sugarcoat?
What are some of the things that
might not be so pretty that you're talking about?
I'm so glad you asked, Lisa.
Yeah.
(06:44):
I think there's a lot of shame and guilt and stigma around
becoming all of a sudden a family caregiver
with all of the different personalities that the family
brings.
And me being the oldest of five, you know, we were no exception.
The beautiful part was that my mother knew us really well.
(07:08):
And she knew that, and there were four of us that lived
locally to her, you know, within 10 or 15 minutes.
And so my mom instinctively delegated responsibilities to us.
And, you know, some of us took charge in one area
and some of us took charge in another area.
(07:30):
For me, I was responsible for all of the kind of
admin things, you know, all of the practical, pragmatic,
logistical things.
And so in the book I write about that emotional piece and then
the logistical piece.
And I even provide PDFs and ideas on ways that people can,
(07:56):
in a way, I joke about it, but it really is that we kind of turned
my mom's diagnosis into a business plan
or a strategy to try and get through the day by day
as best we could.
So that was one thing.
I think another thing that I learned through all of those years,
(08:17):
six plus years, was that I was not trained as well by her to take good care of myself.
So my mom was very self-sacrificing, raising five kids on
hardly any money at the time when we were little.
When my dad was a student and she was not working outside the home.
(08:40):
She had enough work to do with five babies within seven years.
There was that sacrificing herself for the betterment of everybody else,
putting her own needs last.
And I think that that's some of the, if I were to say,
(09:01):
I mean, some of the dysfunction that I experienced as a caregiver
is that I was not taking good care of myself at all.
So the irony in the paradox there is that, you know, here's this mother of mine
that I desperately want to save if I can, because at one point, you know,
(09:24):
I thought, oh, well, if we just do this, if we just do that,
then we can make life easier. We can save them.
And really, ultimately, we don't have that kind of control.
And so the irony is that I was trying to control and save and fix and heal her while my own nervous
system was shot. I wasn't sleeping well. I was eating terribly. There was no nutrition in my life.
(09:51):
And yet we were feeding her all the nutrition, but I was binging on sugar, because that was my go-to,
that was my default. And I carried a lot of weight literally and figuratively.
So back then in 2011, I was 60 pounds heavier than I am today.
And it was little, it felt like the weight of the world was on my shoulders. And I know that my mom,
(10:17):
even though she was very small in stature, very tiny woman, like I towered over her.
She was like up to here on me, which I'm just putting up to my ear. Yeah, she was small,
but mighty as we say. Sure. Sure. I know that. That way to be. I am very short myself.
(10:38):
A lot of us as women, we get taught these things. We get taught to neglect our own needs.
In favor of everybody else. And we get taught to over give cheerfully, right? And just keep a happy
face on it no matter what. And to me, I see a lot of that kind of teaching as really gaslighting and
(11:09):
really, you know, training us to ignore our own feelings and not even express our own feelings.
Needs once. How do we, especially at the holidays, that kind of stuff can be really prevalent,
(11:31):
that kids are home from school. There's extra caregiving time. And a lot of times this women were
expected to automatically do all the holiday things, plan the parties, put up the decorations, all of that.
And have all this extra workload while being happy about it and cheerful about it. And,
(11:53):
yeah, for some people, including family caregivers, including women family caregivers, the holidays
really are joyful and fun and exciting and that's awesome. And at the same time, for a lot of us,
there's either a lot of mixed feelings where we also have, you know, just overwhelm and feeling
overworked or we have grief that comes up particularly at this time of year or some of those other
(12:17):
emotions that we can feel at the same time, actually, as maybe being happy at the holidays and
enjoying Christmas music or things like that. How do we, how do we stay aware, even of our own
authentic feelings? And how do we keep saying no thank you to people wanting to tell us how we should
(12:39):
feel? Yeah, that's a great question because really it goes back to leadership and our own leadership.
And I always say that my caregiving years provided a transformational leadership journey for me,
whereas previous to that, I didn't really understand the term paradox. And new things can be true
(13:01):
at the same time. And so I have spent the year since I wrote the book and, you know, since the book has
come out learning about the value of embracing that paradox. And so I really think that's important.
As we get to know ourselves better and get more curious about our own journeys, then we can
(13:25):
address those things that come up and they seem what I used to think of as contradictory.
Like that can't be right because this is true for me. And so embracing paradox has been a really
big deal for me and also discernment. So I saw my mom being very energetic, very into everybody else's
(13:49):
journeys and getting involved into everything everybody else was doing. And yet she was ignoring
often her own needs. And so I think one of the gifts, if I might say, of her journey and mine was to
understand and learn that we can't do it all and that we are human and we are not machines.
(14:17):
And my mantra that I started to incorporate during those years was, this is not mine to carry.
This is not mine to carry. So that's how I would find a popular saying not my circus, not my monkeys,
that kind of thing. Yeah. That's really how my discernment came forward. And it's still I'm still
(14:41):
learning that discernment about let's look at this situation, whatever it is. And let's determine
what's mine to carry and what I can step back from. And so I've learned over those years and now again
still learning how to take a pause, how to take a time out. And I don't have to have all the answers
(15:05):
right in this moment. And I can ask for help, which is something again that I was never taught to do.
So my mom was very in charge. She was helping everybody else. And yet she never learned to ask for help
for herself. And then she not better at it during her cancer journey. So I would say that was a win.
(15:27):
Yeah. That she finally was able to receive care for herself. Yeah. Yeah. Which can be super,
could be super sweet. And and actually really valuable experience for all of you in the family.
It was. I mean, for me, I felt honored and privileged that we were in that first of all physical
(15:55):
proximity. So she had moved out after she retired in Michigan. She had moved out to California to live
near most of us. And she, her house was around the corner from the her grandchildren's school.
So they would walk to her house after school and she would slice up oranges and give them snacks.
(16:16):
And then they would hang out and read and you know, whatever little kids did after school, they
were doing it at their grandmother's house. And it was a very, very sweet thing because they also
saw her during those six years, you know, sometimes very up and sometimes very, very low to the point where
when she was speaking, she was only speaking in a whisper because, you know, she was going through
(16:41):
treatment and it was really taking a lot out of her. So she didn't have the capacity to even relate
with us as she had in the past. So talk about a shock and learning what it means to be in a state of
grace. My mom was an example of that. She was showing us what that meant to be in a state of grace and
(17:04):
really, you know, allowing her body to do what it needed to do to process all of the chemicals,
all of the treatment, you know, the side effects, all of that. We're going to take a break now.
Please stay right here and we'll be right back.
(17:24):
Thank you for sticking around. We continue our conversation. So yeah, it keeps coming back for me
to being willing to embrace all of humanity, like in each of us, right, that as a caregiver, I can do
a lot of things for for other people and I do, particularly my daughter in my case, all day long, lots of stuff.
(17:51):
And at the same time, I've got to have downtime at some point. I've got to crawl into the covers and
read some novels and rest and I've got to literally sleep and I've got to eat good food and I've got to
move my body upside a bit and I've got to go to the doctor myself sometimes and I'm sure as I get
older that'll become a lot more prevalent and there will be something where I need care. And I think
(18:18):
you know, we don't we have this way of splitting people up and not not wanting to see us as whole human
beings each. The care recipient has strengths and abilities and things they're contributing. Your mom
clearly continued to contribute a lot of things to the people around her and by her example of how she
was living and her approach to her illness and then you know, the person giving care does have needs,
(18:49):
limitations and real, you know, ways that they already need to be cared for besides the fact that
eventually they might get all themselves. And it keeps coming back that same picture for me.
Just like also embracing all of our feelings, right? We might feel in thousand things at once. We
(19:15):
might feel really happy about something that's happening and oh, there's wonderful music and
pretty lights and and something's really nice and then at the same time feel like, oh, I'm sad that
my loved one doesn't participate in this the way that they used to or even the way I imagined they
(19:36):
would or or I'm sad that, you know, I'm so far from family and I it's too difficult for me to go travel
to them or I'm feel overwhelmed and I feel like there's too much to manage, you know, just simple
medical needs or not simple. The medical needs alone, you know, for some of us day to day
(20:02):
life just getting through the requirements of a day for a loved one is enough and to throw on top of it
and you know, that we're gonna plant a party, go to a party, wrap presents, whatever any of that is
just unthinkable at sometimes and I think for all that to coexist is is being human. It is. Yeah.
(20:29):
It is for sure. I remember thinking, you know, how can everybody be going on as normal,
nor quote, normal through the holiday season when my mom is dying at home? How can that be? Like,
I had tunnel vision and that's all I could see is, you know, she's in a state of decline and some
(20:50):
holidays were great but it really taught me that I needed to embrace the moments and later on when I was
getting grief counseling after she died, I got grief, grief counseling, which I highly recommend. It was
through hospice and it was amazing and the grief counselor, which I didn't even know this was a thing
(21:11):
but she said, it sounds like you've been doing some anticipatory grief. I didn't, I never even thought of
that but I did. I said to myself, Lynn, this is my mantra, no regrets. When mom goes, you're gonna have
no regrets and so not to kill myself and trying to help, you know, save her. No, wasn't that kind of
(21:37):
thing? It was to take these moments and embrace whatever I could out of them. I wrote in the book about
the, you know, Thanksgiving and how Thanksgiving and Christmas were my mom's favorite holidays.
She loved all the food and she used to just scurry around the kitchen and she would never sit down
but guess what? When she was forced to because she didn't feel well, then Christmas and Thanksgiving
(22:03):
became a whole new ballgame and we adjusted for whatever capacity she had and I remember sitting
there thinking, okay, Lynn, embrace this moment, like whatever bugs you about mom right now,
just let it go because this could be the last one and it was like that for any occasion, really,
(22:24):
birthdays, holidays but these are milestones in our lives and as we're caring for loved ones that
previously we took for granted and now there's no way because of my mantra, no regrets. I refuse
to take any other moments for granted. Even those things that bothered me about her, I would embrace
(22:45):
those as well and I would think to myself, you're going to miss this when you're gone as irritating as
it is, you're going to miss this when she's gone. It's part of the experience and probably no two
people ever have a purely blissful, like, relationship love everything about you kind of relationship, you know,
(23:05):
it might feel like that in honeymoon stages of a romantic relationship or something that's not
going to last very long from anyone I ever seen but I think, you know, yeah, that's,
there's this fine line between embracing that whole experience and yeah, flipping back into maybe
(23:28):
that being like a gaslighty thing where you're like, I'm going to put on the smile because
mom's still here and what's, how do you know which one you, how you're, that you're actually embracing
the experience and feeling what you feel? I mean, you can't really know. I remember being so
(23:51):
cocky and thinking, you know, if this were me, I would do it this way. If I was the one that had cancer
or, you know, and I often think about this because that was my recovering control freak brain saying
you would do it like this and of course you'd have no way of knowing until a situation arises and
(24:14):
you are actually experiencing that, how you would be about it, what you would do about it. And so
writing the book for me was to normalize those things that I previously thought were true or that I
could control and then realizing that I couldn't and I want the reader to know that they're okay
(24:40):
and that they're not alone and these are all normal feelings and it's all okay. However, it hits you
at whatever time of the year it hits you. Yeah, whatever you're feeling, it's okay. That's something that I
will hope to, that I intend as a recurring theme here that does seem to come up, you know,
(25:01):
all part of being human. Absolutely. And nobody's perfect, your care recipient is not perfect,
you're not perfect, you know, and that's okay. There can be tons of love there, there can be
enjoyable moments, there can be meaning. I think another theme that came up for me during those years
(25:23):
and that I'm still working with is trust. So I really had to learn to trust my mom and her instincts
and when she was feeling well, she was the boss, she was in charge, she was giving order, she was
delegating responsibilities and then and especially since I wrote the book and I've had these years to
(25:46):
experience myself and my own leadership is to trust myself more and to trust my instincts and to
listen to that inner voice that usually is there's either some pain there or my body is talking to
me in some way and to really hone in and get more quiet and instead of trying to fix and solve and
(26:13):
put a band-aid on things really just again like I said earlier taking that pause and wondering
what's this about and what do I need in this moment right now and trusting that I know
what the answer is. So that's been really helpful. Yeah, it's kind of trust in yourself but also trust
(26:35):
in in your case your mom and in your your loved ones that they know what's best for them or they
know what they need as well. Yeah and and also trusting the process right so you know we enter into
as caregivers for whatever the care situation is whether it's you know something by birth or some
(27:01):
diagnosis or Alzheimer's dementia you know your kid God forbid gets in a motorcycle accident and has
to have 10 million surgeries and goes on for years it is all kind of embracing what you don't know
embracing what can come up embracing the last minute something embracing some dysfunction
(27:28):
because there's you know kind of how we think and then how we act out from what we think
and then there's what's really happening what's being able to identify and kind of articulate
what's going on and when we can learn to articulate what's going on we can make all of the difference
(27:51):
in almost any situation not that we can control it but that we can name it and move from there with
love and with our own humanity very much intact and in the forefront. Yeah, there are so many things
that get better when you when you're honest and real about them right if I have glasses if I
(28:17):
went around saying my vision's great lololaw I might run into a lot of problems for quite a long time
and yet as soon as I you know acknowledge no I can't actually read that writing right there it looks
you know blurry and I get the glasses and accommodation right that we're all very comfortable with
(28:43):
and very familiar with then you know I can do all sorts of things safely and and well and I think a
lot of life is is kind of like that like you get the right things only start to be able to be put
in place when you're honest about them and when you acknowledge your ease your feelings your
(29:05):
your actual preferences then you can start building your life around that exactly I love that
example too Lisa because I I did that to myself I tortured myself for a couple of years and I
needed glasses I needed to be able to read and to see up close and I was just saying to myself no
(29:26):
no no you're you're fine you could just hold it further away you know at a certain point my arm
could not get any longer yeah and that's one that so many of us go through with age yeah we're very
familiar with and yeah you know doesn't have the quite as much stigma or anything around it as some
(29:48):
accommodations do yeah what I love about the lessons that we learn is that I always think about a
game that my nieces and nephews would play well my siblings would have them do it like sitting
around the dinner table at the end of the day and every person would go around and
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