December 12, 2024 • 22 mins
Jessica Patay is the founder and executive director of We Are Brave Together which brings together and uplifts over three thousand parents of children with disabilities. When her son was diagnosed with Prader-Willi syndrome, she met a warm community of famlies whose child also experienced the condition. We Are Brave Together creates a similar experience for many more moms whose children experience a wide variety of disabilities. You can join a free online or in person facilitated support group, receive newsletters and check out the Brave Together podcast!
We talk about loving our caree, all the myriad feelings that can come up during the holidays including cyclical grief, and how to gift a family caregiver.
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
We talk about loving our caree, all the myriad feelings that can come up during the holidays including cyclical grief, and how to gift a family caregiver.
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]
(00:11):
Welcome to Love doesn't pay the bills.
I'm Lisa Chuty and with me today is an amazing connector of people.
She has brought over 3,000 family caregivers,
parents whose children have disabilities together through her organization.
And the organization is called Brave Together.
(00:33):
The guest is Jessica Pate.
Welcome Jessica.
Hi, Lisa.
Thank you so much for having me.
It's going to be great.
I'm excited.
So can you summarize for audience members that might not know you,
your experiences raising and caring for your son?
(00:56):
Absolutely.
So I have Ryan, who I say is the one who made me a caregiver, and he is 21.
And he was born with a rare genetic disorder called Prutter-Willey syndrome.
And we were just so shocked.
We had never heard of it.
Of course, even when we were in the hospital for a month,
(01:18):
there were nurses and doctors who said,
remember hearing about that in medical school?
I remember hearing that or reading that in a text book somewhere.
And we were just so shocked because it's such a weird mix of symptoms.
And also, we just didn't have anybody else in our lives
that had a child with medical problems or disabilities or anything.
(01:40):
Thankfully, we got plugged in right away to support
through the Prutter-Willey California Foundation.
Went to our first support group when he was a baby.
Went to our first conference when he was around four or five months old
and just got right in to the community and found our people and found families
that we are still in touch with to this day.
And that and other experiences before and after Ryan really cemented
(02:05):
my love of community and my passion for community and building communities
and really emphasizing to my fellow caregiving mom or parents
that we must be in community, which is why I created We Are Brave Together.
I also have two other children, Luke who is 24 and Kate who is 19.
(02:26):
And I've been married to my husband for 27 years.
I think it's so awesome that you had this positive experience
connecting to other families and you realized that enough to say,
I want to recreate this for other families.
And you have and that's fantastic.
(02:47):
I really appreciate that.
I think on your website, you said you would love to just tell other families
you're not alone, just show up with warmth and big hug and welcome to caregiving.
I think that you've done a great job.
(03:08):
So in one sense, that's something already that's awesome about your son
that it led to this.
I always like to ask, what makes your son awesome?
What makes your carry fantastic?
You know, we do not ask that enough.
And I so thank you for asking, Ryan has the biggest heart.
(03:29):
He is very compassionate.
He is intuitive.
And I don't think I really realize that until maybe the last five years.
He really cares about people.
He really cares about himself.
There's ego-centrism that's a part of Prada Raleigh Syndrome.
But he really does care about others and it's really beautiful to watch and witness.
(03:55):
And I would say it's just what I learned from him, really all my kids.
I think makes being a mom and caretaking magical.
And I think when you have a child with a diagnosis, it really helps you to shift your perspective
and your priorities.
I say that it's because of Ryan that I'm a recovering perfectionist.
(04:19):
There's just things you have to let go of.
And you realize really what's important, what's not important for all your kids and just
kind of life in general.
And so I'm very grateful for that.
Awesome.
It sounds like he's a fair amount like his mother.
And you mentioned learning what's important and where to focus.
(04:48):
And I think that's a good segue into talking about the season.
And right now with the holidays, what would your suggestions be for family caregivers
to truly have a happy holidays to make sure that they are listening to their own internal
(05:12):
needs and wants and making it truly happy for themselves?
Well, I think you said it right there.
I think when I would say you have permission to look at your own needs and wants and the
needs of your children.
We don't have to answer to other people's traditions and expectations.
(05:35):
You get to decide as the parent what's best for your family.
Will it ruffle feathers if you go against traditions?
If you say we're only coming for an hour because you know your child cannot last longer than
an hour.
Or we're not going to do X, Y and Z this year.
And this is what we are going to do this year.
Thank you for thinking of us, but no, we're going to decline the sanitation.
(06:00):
You get to decide what is best for you as the parent and you get to decide what is best
for your children.
And if you have other kids, what's best for them as well?
It's not always easy to make those decisions, but I encourage you to honor what you need.
And also don't look at social media if it's just killing your heart, because you're watching
(06:27):
what other people are experiencing during the holiday season that you are not experiencing.
And you're not able to because it's too hard or it's just, it's impossible.
If your child is medically fragile, psychologically fragile, behaviorally fragile, doing all the things,
all the activities and jumping into parties and festivities and going to the holiday
(06:49):
parade in your town, you know, that might not work for you.
And it's okay to grieve that and have compassion on yourself.
I'm doing what's best for me.
I'm doing what's best for my child.
Yeah, thank you for that.
I think so often, you know, we have, we just, we have so much pressure to think about
everyone else except for ourselves.
(07:11):
And over the years, I feel like I've gotten better at resisting that.
To some extent, it's always a work in progress because there's so much around us that tends
to drive us to overgive, think about everyone else's first.
And not even include ourselves, you know, if you're planning for a family, like, be part
(07:36):
of the family, like, like that, that includes you.
Maybe you don't get everything exactly the way you'd prefer.
And when it comes to social media, yeah, it's so easy to get caught up in comparisons
with it because not only is it, not only you might you see people who
just have different circumstances and resources than you, but also the best of their lives
(07:58):
usually.
Right.
You don't see all the effort it took to plan their party and their trip and their cleaning
up after it and all those different things.
Correct.
Yeah.
Yeah, very true.
We're going to take a break now.
Please stay right here and we'll be right back.
(08:21):
Thank you for sticking around.
We continue our conversation.
We're going to switch gears a little bit.
One of the things that parents who's children have disabilities can feel in the holidays
is cyclical grief.
I have some people who might not have heard that term before.
Can you explain what that is?
Yeah.
So I call it cyclical grief because it's not a grief that, you know, you grieve and then
(08:42):
you're over it.
I think that when you experience loss of any kind that it lives with you, now, if you
are stuck in sadness or anger or bitterness about a loss and, you know, it's really, really
affecting it then I think it's time to call for help.
(09:04):
But we don't necessarily just radically accept our child's diagnosis and never have any feelings
about it ever again.
And so it works that way.
Wouldn't it be nice?
Can we just push that button?
I think if we just first say, "cyclical grief is normal" and if my grief buttons are pushed
again at the holidays at any day, this is normal.
(09:28):
This is normal and just feel it because it's better to feel it than to stuff it in your
body because that has its own repercussions, physically, psychologically.
And so we don't have to be afraid of our grief.
We can say, "Yeah, I'm kind of sad that our family doesn't do holiday break vacations like
(09:48):
this other family.
Am I grief buttons are pushed because we just can't do this.
It's okay to honor your grief.
It just means that you long for something else.
You're longing for the life that you thought you were going to have, the family life that
you were going to have, the life that your child was going to have.
(10:10):
And there's nothing wrong with that.
We don't have to feel guilty about grieving about the child who's in front of us.
Yeah, it's an odd dichotomy sometimes because it is possible to feel that grief even though
(10:30):
this beautiful child is right in front of you.
And maybe there's something in happening and loving the holiday that you do have.
Maybe they're not.
You're the right, they're a beautiful person right in front of you that you can find wonderful
things about.
And yet they're not what you imagined, who you imagined when you were pregnant or maybe
(10:57):
even what you experienced at some point before an illness or an injury happened.
As caregivers, our lives are radically changed.
And we do have so much impact from our child's disability.
Of course our lives are not what we imagined.
They would be not following whatever plans we had.
(11:20):
And I do think it's natural and normal to grieve that.
I think it's natural and normal to have a lot of huge feelings and have these contradictory
feelings.
I know I feel that myself.
Yes, yes.
Having grief and joy can live on the same bench, you know, they really can.
Yeah.
And if you feel grief, it doesn't mean anything about feeling any less love for your child or
(11:42):
any about feeling any less appreciation for the things that are great or are going well
in your life, it really does it.
True.
How can people around family caregivers support someone who's feeling this kind of grief?
(12:07):
Well, when the person who's grieving needs to be bold and brave enough to share what's
going on, you know, because I think we do a very good job of hiding it well and masking
what we're feeling when we're around others.
So I think the first step is to say, you know, I think it would be good for me to talk to
my friend or my family members, you know, about how I'm feeling.
(12:28):
And then a way that they can be supportive is, it's just validate.
Just listen, validate, you don't have to fix, you don't have to do anything, you don't have
to move any mountains, but just gosh, I can imagine that it's really, really hard right now
over the break when your kids are home for two weeks and it just feels impossible to manage
(12:51):
everyone or whatever it is, you know, or grief about what you're not able to do.
You know, or what your child's not experiencing because of their disability or diagnosis.
Just be validating, show empathy and compassion.
(13:11):
Always good advice.
Yeah.
Are there some unusual kind of presentations of this sort of grief that you can think of?
Like examples that might not be immediately easy to recognize?
Well, anger can certainly cover up our sadness.
(13:31):
So I think sometimes when we are presenting kind of angry or angry undertone, maybe some
of our, you know, best friends or family members can say, gosh, you seem really, really upset.
You know, do you want to talk about it?
You seem really angry.
Is there, is the grief showing up?
(13:54):
Are you feeling the waves of grief again these days?
And so, you know, I hope friends and family listen to podcasts like this so that they can hear
these kinds of things that we all need to hear.
Sure.
And please go ahead and share the podcast.
Any of your friends and family.
(14:14):
It would be useful.
I do try to make this show in particular useful in that way.
Yeah, not only can anger be a, like the face of the family.
Face over, over sadness or grief, but I think also a lot of us do experience really like righteous
anger.
(14:35):
Really like that's totally okay to feel, you know, whatever you're feeling.
Like if you are just having a wonderful holiday season and it's really as joyful for you
in your love and it, that's awesome.
Go all in, like, live it up.
That's fantastic.
If you're sad, if you're angry, if you're, you know, feel left out of things or lonely,
(14:59):
like, that's okay.
Let's talk about that.
Let's start to understand what you need in order to adjust that.
And speaking of what you might need, what are some things that a person who is experiencing
this kind of grief themselves might do for self-care to work with that?
(15:22):
I think journaling about it is really a good way to just get it out.
I think it's very cathartic.
And if you don't feel like writing, I think just dictate into your phone, into your notes,
just all your feelings, all your thoughts, just get it out of your body in some way.
I think physical movement is really, really helpful too.
(15:43):
If you can, get outside, get out in the sun, get in nature, put your feet in the grass,
you know, or the dirt or whatever, I think that is really, really helpful.
And I think talking to a life-giving friend, or if a therapist or a mentor or a coach,
you know, feels safer or a better setting for you than do that.
(16:06):
But just don't ignore it and don't place an expectation on yourself that you shouldn't
have emotions about this.
Right.
Right.
Or you should have only happy emotions.
Like, no, you feel whatever you feel.
And there's real reasons for that.
Yeah.
Yeah.
Yeah.
(16:27):
The exercise and time outside, I hear you on that one so much, it makes a big difference
for me.
And it's not so much that I get out on that one particular day.
And suddenly I feel better for me.
It's like if I am doing my, you know, 30-minute walk outside three times a week, during that,
(16:48):
most of that week, I'll feel significantly better than the week that I didn't.
It's a habit that you build and you benefit from over time.
It's for me and it takes, you know, if I haven't been outside and walking, if I've been a
real couch potato and hiding in the house, which, you know, guilty sometimes, then it takes,
(17:20):
you know, possibly two weeks or something of getting out more to feel better.
I would want to stick with it if you're building that habit.
Right.
A couple of weeks at least before you even make a decision whether it's helping you or you
want to continue.
It's shifting gears again.
Of course.
Of course.
What are some, some holiday gifts that you can think of for medical moms in particular
(17:45):
that might be really nice to do for the moms or for the kids for moms?
Yeah.
Well, I honestly, I think for any mom, you know, giving them laundry coupons, I'll come over
and do laundry or you can drop your laundry off on the porch and I'll wash and dry and bring
(18:05):
it back to you a couple days later.
Taking to do tasks off a mom's list, I'll run errands for you.
I'll go to the pharmacy for you.
I'll bring you your favorite tea or coffee.
Certainly, schedule a massage or a facial for the mom, you know, or at least maybe a gift
(18:25):
certificate if you can, you know, splurge like that.
And I think a really nice card that says, "I see you."
Yeah.
"I see you working hard.
I know our lives are very different, but I'm here to walk beside you and I love you and
I care about you."
Yeah.
(18:46):
I think that those would be really wonderful things.
And it's such a theme.
Every time I ask similar questions of caregivers or people who are around a lot of caregivers
take something off the plate.
It doesn't have to be the direct care, but can you run an errand to the drug store?
Can you, Rick, can you do the artwork?
(19:09):
Yeah.
It does, and it does make a huge, huge difference.
I think there's this nesting doll thing.
Or, you know, in Lord of the Rings, in the final scenes, Sam says, "I can't carry the ring,
but I can carry you, you know, pick them up and get there."
(19:30):
And I think that's so, that's so important for people to understand.
If you care about a caregiver and a diet caregiver, you can do something.
And it doesn't have to know the medical condition.
You have to be comfortable with the behavioral issues or anything else like that, you can
find something to control.
(19:54):
I also love the idea of just a really heartfelt, card in words, and sometimes that does make
a huge difference.
I've been touched a lot of times by a simple, something someone wrote me.
Yes.
Yeah.
And we don't get enough just validation that way.
You did great, you're doing great.
(20:16):
I do care about you.
I see you.
Yeah.
Yeah, so fabulous ideas.
Thank you.
You're welcome.
Thanks for asking.
Yeah.
Is there anything we haven't touched on that you want to add?
So many things we could talk about.
(20:36):
And I would just say, you know, if you are seeking support and community, you're welcome to join
we are brave together.
Membership is free.
We have a podcast and we have connection circles, which are our support groups all over
the place, virtual and in person.
Or if you're interested in leading a connection circle for us, you can certainly reach out to
(20:58):
us at hello@wearebravetogether.org or if you have any inquiries, feel free to reach out.
I just don't want any caregiving mom or dad to feel like they're alone because we are isolated
in our journeys and it's really important to know that you have other people in your corner.
It doesn't have to be 10 people.
(21:19):
But if you have one or two people who understand what your life is all about and what care
taking is all about, wherever you are on the spectrum of caregiving, it matters.
And there's an automatic bond that you have with other caregiving parents.
So please know that we're all out there to support you and you don't have to do this alone.
You're not meant to do it alone.
(21:41):
That's a beautiful message.
And I do very much encourage anybody who might want to check out the brave together community.
I had the opportunity to participate in a group recently online, which was fabulous and
fabulous that we can do it from anywhere.
I live in somewhat remote areas, so there's limited in-person groups similar and it's wonderful
(22:06):
to be able to chat and make that connection and realize you're not alone.
Thank you so much for your time, Jessica.
Thank you so much, Lisa.
It's really a privilege always to be able to share a little of my story and about.
We are brave together and the topics that I'm passionate about.
So thanks for having me.
I'm Lisa Tudian.
This is Love Doesn't Pay the Bills.
(22:27):
Thank you for having family caregiving visible.
If you've enjoyed the show, please tell a friend.
Thanks for listening.
[MUSIC]
[MUSIC]
(00:11):
Welcome to Love doesn't pay the bills.
I'm Lisa Chuty and with me today is an amazing connector of people.
She has brought over 3,000 family caregivers,
parents whose children have disabilities together through her organization.
And the organization is called Brave Together.
(00:33):
The guest is Jessica Pate.
Welcome Jessica.
Hi, Lisa.
Thank you so much for having me.
It's going to be great.
I'm excited.
So can you summarize for audience members that might not know you,
your experiences raising and caring for your son?
(00:56):
Absolutely.
So I have Ryan, who I say is the one who made me a caregiver, and he is 21.
And he was born with a rare genetic disorder called Prutter-Willey syndrome.
And we were just so shocked.
We had never heard of it.
Of course, even when we were in the hospital for a month,
(01:18):
there were nurses and doctors who said,
remember hearing about that in medical school?
I remember hearing that or reading that in a text book somewhere.
And we were just so shocked because it's such a weird mix of symptoms.
And also, we just didn't have anybody else in our lives
that had a child with medical problems or disabilities or anything.
(01:40):
Thankfully, we got plugged in right away to support
through the Prutter-Willey California Foundation.
Went to our first support group when he was a baby.
Went to our first conference when he was around four or five months old
and just got right in to the community and found our people and found families
that we are still in touch with to this day.
And that and other experiences before and after Ryan really cemented
(02:05):
my love of community and my passion for community and building communities
and really emphasizing to my fellow caregiving mom or parents
that we must be in community, which is why I created We Are Brave Together.
I also have two other children, Luke who is 24 and Kate who is 19.
(02:26):
And I've been married to my husband for 27 years.
I think it's so awesome that you had this positive experience
connecting to other families and you realized that enough to say,
I want to recreate this for other families.
And you have and that's fantastic.
(02:47):
I really appreciate that.
I think on your website, you said you would love to just tell other families
you're not alone, just show up with warmth and big hug and welcome to caregiving.
I think that you've done a great job.
(03:08):
So in one sense, that's something already that's awesome about your son
that it led to this.
I always like to ask, what makes your son awesome?
What makes your carry fantastic?
You know, we do not ask that enough.
And I so thank you for asking, Ryan has the biggest heart.
(03:29):
He is very compassionate.
He is intuitive.
And I don't think I really realize that until maybe the last five years.
He really cares about people.
He really cares about himself.
There's ego-centrism that's a part of Prada Raleigh Syndrome.
But he really does care about others and it's really beautiful to watch and witness.
(03:55):
And I would say it's just what I learned from him, really all my kids.
I think makes being a mom and caretaking magical.
And I think when you have a child with a diagnosis, it really helps you to shift your perspective
and your priorities.
I say that it's because of Ryan that I'm a recovering perfectionist.
(04:19):
There's just things you have to let go of.
And you realize really what's important, what's not important for all your kids and just
kind of life in general.
And so I'm very grateful for that.
Awesome.
It sounds like he's a fair amount like his mother.
And you mentioned learning what's important and where to focus.
(04:48):
And I think that's a good segue into talking about the season.
And right now with the holidays, what would your suggestions be for family caregivers
to truly have a happy holidays to make sure that they are listening to their own internal
(05:12):
needs and wants and making it truly happy for themselves?
Well, I think you said it right there.
I think when I would say you have permission to look at your own needs and wants and the
needs of your children.
We don't have to answer to other people's traditions and expectations.
(05:35):
You get to decide as the parent what's best for your family.
Will it ruffle feathers if you go against traditions?
If you say we're only coming for an hour because you know your child cannot last longer than
an hour.
Or we're not going to do X, Y and Z this year.
And this is what we are going to do this year.
Thank you for thinking of us, but no, we're going to decline the sanitation.
(06:00):
You get to decide what is best for you as the parent and you get to decide what is best
for your children.
And if you have other kids, what's best for them as well?
It's not always easy to make those decisions, but I encourage you to honor what you need.
And also don't look at social media if it's just killing your heart, because you're watching
(06:27):
what other people are experiencing during the holiday season that you are not experiencing.
And you're not able to because it's too hard or it's just, it's impossible.
If your child is medically fragile, psychologically fragile, behaviorally fragile, doing all the things,
all the activities and jumping into parties and festivities and going to the holiday
(06:49):
parade in your town, you know, that might not work for you.
And it's okay to grieve that and have compassion on yourself.
I'm doing what's best for me.
I'm doing what's best for my child.
Yeah, thank you for that.
I think so often, you know, we have, we just, we have so much pressure to think about
everyone else except for ourselves.
(07:11):
And over the years, I feel like I've gotten better at resisting that.
To some extent, it's always a work in progress because there's so much around us that tends
to drive us to overgive, think about everyone else's first.
And not even include ourselves, you know, if you're planning for a family, like, be part
(07:36):
of the family, like, like that, that includes you.
Maybe you don't get everything exactly the way you'd prefer.
And when it comes to social media, yeah, it's so easy to get caught up in comparisons
with it because not only is it, not only you might you see people who
just have different circumstances and resources than you, but also the best of their lives
(07:58):
usually.
Right.
You don't see all the effort it took to plan their party and their trip and their cleaning
up after it and all those different things.
Correct.
Yeah.
Yeah, very true.
We're going to take a break now.
Please stay right here and we'll be right back.
(08:21):
Thank you for sticking around.
We continue our conversation.
We're going to switch gears a little bit.
One of the things that parents who's children have disabilities can feel in the holidays
is cyclical grief.
I have some people who might not have heard that term before.
Can you explain what that is?
Yeah.
So I call it cyclical grief because it's not a grief that, you know, you grieve and then
(08:42):
you're over it.
I think that when you experience loss of any kind that it lives with you, now, if you
are stuck in sadness or anger or bitterness about a loss and, you know, it's really, really
affecting it then I think it's time to call for help.
(09:04):
But we don't necessarily just radically accept our child's diagnosis and never have any feelings
about it ever again.
And so it works that way.
Wouldn't it be nice?
Can we just push that button?
I think if we just first say, "cyclical grief is normal" and if my grief buttons are pushed
again at the holidays at any day, this is normal.
(09:28):
This is normal and just feel it because it's better to feel it than to stuff it in your
body because that has its own repercussions, physically, psychologically.
And so we don't have to be afraid of our grief.
We can say, "Yeah, I'm kind of sad that our family doesn't do holiday break vacations like
(09:48):
this other family.
Am I grief buttons are pushed because we just can't do this.
It's okay to honor your grief.
It just means that you long for something else.
You're longing for the life that you thought you were going to have, the family life that
you were going to have, the life that your child was going to have.
(10:10):
And there's nothing wrong with that.
We don't have to feel guilty about grieving about the child who's in front of us.
Yeah, it's an odd dichotomy sometimes because it is possible to feel that grief even though
(10:30):
this beautiful child is right in front of you.
And maybe there's something in happening and loving the holiday that you do have.
Maybe they're not.
You're the right, they're a beautiful person right in front of you that you can find wonderful
things about.
And yet they're not what you imagined, who you imagined when you were pregnant or maybe
(10:57):
even what you experienced at some point before an illness or an injury happened.
As caregivers, our lives are radically changed.
And we do have so much impact from our child's disability.
Of course our lives are not what we imagined.
They would be not following whatever plans we had.
(11:20):
And I do think it's natural and normal to grieve that.
I think it's natural and normal to have a lot of huge feelings and have these contradictory
feelings.
I know I feel that myself.
Yes, yes.
Having grief and joy can live on the same bench, you know, they really can.
Yeah.
And if you feel grief, it doesn't mean anything about feeling any less love for your child or
(11:42):
any about feeling any less appreciation for the things that are great or are going well
in your life, it really does it.
True.
How can people around family caregivers support someone who's feeling this kind of grief?
(12:07):
Well, when the person who's grieving needs to be bold and brave enough to share what's
going on, you know, because I think we do a very good job of hiding it well and masking
what we're feeling when we're around others.
So I think the first step is to say, you know, I think it would be good for me to talk to
my friend or my family members, you know, about how I'm feeling.
(12:28):
And then a way that they can be supportive is, it's just validate.
Just listen, validate, you don't have to fix, you don't have to do anything, you don't have
to move any mountains, but just gosh, I can imagine that it's really, really hard right now
over the break when your kids are home for two weeks and it just feels impossible to manage
(12:51):
everyone or whatever it is, you know, or grief about what you're not able to do.
You know, or what your child's not experiencing because of their disability or diagnosis.
Just be validating, show empathy and compassion.
(13:11):
Always good advice.
Yeah.
Are there some unusual kind of presentations of this sort of grief that you can think of?
Like examples that might not be immediately easy to recognize?
Well, anger can certainly cover up our sadness.
(13:31):
So I think sometimes when we are presenting kind of angry or angry undertone, maybe some
of our, you know, best friends or family members can say, gosh, you seem really, really upset.
You know, do you want to talk about it?
You seem really angry.
Is there, is the grief showing up?
(13:54):
Are you feeling the waves of grief again these days?
And so, you know, I hope friends and family listen to podcasts like this so that they can hear
these kinds of things that we all need to hear.
Sure.
And please go ahead and share the podcast.
Any of your friends and family.
(14:14):
It would be useful.
I do try to make this show in particular useful in that way.
Yeah, not only can anger be a, like the face of the family.
Face over, over sadness or grief, but I think also a lot of us do experience really like righteous
anger.
(14:35):
Really like that's totally okay to feel, you know, whatever you're feeling.
Like if you are just having a wonderful holiday season and it's really as joyful for you
in your love and it, that's awesome.
Go all in, like, live it up.
That's fantastic.
If you're sad, if you're angry, if you're, you know, feel left out of things or lonely,
(14:59):
like, that's okay.
Let's talk about that.
Let's start to understand what you need in order to adjust that.
And speaking of what you might need, what are some things that a person who is experiencing
this kind of grief themselves might do for self-care to work with that?
(15:22):
I think journaling about it is really a good way to just get it out.
I think it's very cathartic.
And if you don't feel like writing, I think just dictate into your phone, into your notes,
just all your feelings, all your thoughts, just get it out of your body in some way.
I think physical movement is really, really helpful too.
(15:43):
If you can, get outside, get out in the sun, get in nature, put your feet in the grass,
you know, or the dirt or whatever, I think that is really, really helpful.
And I think talking to a life-giving friend, or if a therapist or a mentor or a coach,
you know, feels safer or a better setting for you than do that.
(16:06):
But just don't ignore it and don't place an expectation on yourself that you shouldn't
have emotions about this.
Right.
Right.
Or you should have only happy emotions.
Like, no, you feel whatever you feel.
And there's real reasons for that.
Yeah.
Yeah.
Yeah.
(16:27):
The exercise and time outside, I hear you on that one so much, it makes a big difference
for me.
And it's not so much that I get out on that one particular day.
And suddenly I feel better for me.
It's like if I am doing my, you know, 30-minute walk outside three times a week, during that,
(16:48):
most of that week, I'll feel significantly better than the week that I didn't.
It's a habit that you build and you benefit from over time.
It's for me and it takes, you know, if I haven't been outside and walking, if I've been a
real couch potato and hiding in the house, which, you know, guilty sometimes, then it takes,
(17:20):
you know, possibly two weeks or something of getting out more to feel better.
I would want to stick with it if you're building that habit.
Right.
A couple of weeks at least before you even make a decision whether it's helping you or you
want to continue.
It's shifting gears again.
Of course.
Of course.
What are some, some holiday gifts that you can think of for medical moms in particular
(17:45):
that might be really nice to do for the moms or for the kids for moms?
Yeah.
Well, I honestly, I think for any mom, you know, giving them laundry coupons, I'll come over
and do laundry or you can drop your laundry off on the porch and I'll wash and dry and bring
(18:05):
it back to you a couple days later.
Taking to do tasks off a mom's list, I'll run errands for you.
I'll go to the pharmacy for you.
I'll bring you your favorite tea or coffee.
Certainly, schedule a massage or a facial for the mom, you know, or at least maybe a gift
(18:25):
certificate if you can, you know, splurge like that.
And I think a really nice card that says, "I see you."
Yeah.
"I see you working hard.
I know our lives are very different, but I'm here to walk beside you and I love you and
I care about you."
Yeah.
(18:46):
I think that those would be really wonderful things.
And it's such a theme.
Every time I ask similar questions of caregivers or people who are around a lot of caregivers
take something off the plate.
It doesn't have to be the direct care, but can you run an errand to the drug store?
Can you, Rick, can you do the artwork?
(19:09):
Yeah.
It does, and it does make a huge, huge difference.
I think there's this nesting doll thing.
Or, you know, in Lord of the Rings, in the final scenes, Sam says, "I can't carry the ring,
but I can carry you, you know, pick them up and get there."
(19:30):
And I think that's so, that's so important for people to understand.
If you care about a caregiver and a diet caregiver, you can do something.
And it doesn't have to know the medical condition.
You have to be comfortable with the behavioral issues or anything else like that, you can
find something to control.
(19:54):
I also love the idea of just a really heartfelt, card in words, and sometimes that does make
a huge difference.
I've been touched a lot of times by a simple, something someone wrote me.
Yes.
Yeah.
And we don't get enough just validation that way.
You did great, you're doing great.
(20:16):
I do care about you.
I see you.
Yeah.
Yeah, so fabulous ideas.
Thank you.
You're welcome.
Thanks for asking.
Yeah.
Is there anything we haven't touched on that you want to add?
So many things we could talk about.
(20:36):
And I would just say, you know, if you are seeking support and community, you're welcome to join
we are brave together.
Membership is free.
We have a podcast and we have connection circles, which are our support groups all over
the place, virtual and in person.
Or if you're interested in leading a connection circle for us, you can certainly reach out to
(20:58):
us at hello@wearebravetogether.org or if you have any inquiries, feel free to reach out.
I just don't want any caregiving mom or dad to feel like they're alone because we are isolated
in our journeys and it's really important to know that you have other people in your corner.
It doesn't have to be 10 people.
(21:19):
But if you have one or two people who understand what your life is all about and what care
taking is all about, wherever you are on the spectrum of caregiving, it matters.
And there's an automatic bond that you have with other caregiving parents.
So please know that we're all out there to support you and you don't have to do this alone.
You're not meant to do it alone.
(21:41):
That's a beautiful message.
And I do very much encourage anybody who might want to check out the brave together community.
I had the opportunity to participate in a group recently online, which was fabulous and
fabulous that we can do it from anywhere.
I live in somewhat remote areas, so there's limited in-person groups similar and it's wonderful
(22:06):
to be able to chat and make that connection and realize you're not alone.
Thank you so much for your time, Jessica.
Thank you so much, Lisa.
It's really a privilege always to be able to share a little of my story and about.
We are brave together and the topics that I'm passionate about.
So thanks for having me.
I'm Lisa Tudian.
This is Love Doesn't Pay the Bills.
(22:27):
Thank you for having family caregiving visible.
If you've enjoyed the show, please tell a friend.
Thanks for listening.
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