December 11, 2024 • 35 mins
Tavia Vital and Anna Sabino, the clinicians behind Time Out For Caregivers, discuss the emotional and practical challenges faced by parents and caregivers of children with Type 1 diabetes. They explore the grief process, the importance of caregiver support, transitioning responsibilities, building communication and independence, finding community resources, and the role of mental health support in managing the complexities of diabetes care.
For more information on and to sign up for Time Out for Caregivers: https://forms.gle/noa3F7fWzEpTuWoc9
Disclaimer
The information contained in this program is based on the experience and opinions of the Integrated Diabetes Services clinical team. Please discuss any changes to your treatment plan with your personal healthcare provider before implementing.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:33):
Hello there, I am Tavia Vital.
I'm a registered nurse and a certified diabetes care and education specialist withIntegrated Diabetes Services.
And I am joined today by Anna Sabino.
Anna, why don't you go ahead and introduce yourself?
Hi, Tavia.
My name is Anna Sabino.
I am also a certified diabetes care and education specialist, have a master's in socialwork, and thrilled to be here on Think Like a Pancreas
(01:01):
Awesome, so we are so glad you guys are joining us today for our podcast.
We're gonna focus some time today talking about experiences of parents or caregivers whoare in charge of taking care of, supporting, educating about their child or teenager's
(01:21):
type 1 diabetes and what life is really like.
You know, what are the first things that pop in your mind when this topic comes up?
Yeah, I mean, I, as someone who provides a lot of mental health support, you know, all daylong, I think the first thing is just this grief process.
(01:42):
You know, so many clients will say to me, and I'm sure you too, Tavia, you know, I feellike...
I'm bringing a newborn home again.
Whether it is that sort of traumatic feeling of leaving the hospital with all the millionsof unknowns, it really is a fresh new start and a drastic shift in lifestyle that affects
(02:06):
the entire family.
Absolutely.
Yeah, and I think you know just depending on the age of a child.
How much familiarity somebody may have with the health care system in the first place?
Like has that family ever been in a hospital situation before have they gone to thepharmacy and filled a prescription before do they know anyone with type 1 diabetes or not?
(02:31):
even heard that term before?
I think, too Tavia, you're getting my wheels turning here.
There's so much shame and guilt that goes with any type of diagnosis.
Is it my fault?
Should I have brought her in sooner?
Or how did I miss this?
(02:54):
And this sort of grief process of could have, should have.
would have and sort of reliving that trauma is what I spend a lot of time talking with myfamilies about learning their story and really understanding, wow, this has been such a
(03:14):
massive
change and really rebirth in this sort of new life.
And as someone living with type 1, and I know you are too, for decades, to this day, evenas an adult, I always say that the burden of self-advocacy is still the hardest challenge
(03:36):
when it comes to diabetes, whether it is calling.
insurance company or Dexcom.
But when you're first diagnosed, it's like, I don't even know what I need.
I don't even know what to say because that burden is so strong.
Absolutely, and you're just not only are you burdened at the moment of diagnosis with thewhat to do next?
(03:58):
What do I do now?
What do I do next?
But then there's this amount of fear Right a huge amount of fear plus any emotional piecethat you might be experiencing if it's in the beginning of maybe Still in denial like this
can't be happening to our family, right?
This isn't right or maybe you jump straight to anger and you're just furious that this ishappening to your child
(04:20):
or 1 of many other emotions that people go through, makes the, how do I put 1 foot infront of the other, just that much more challenging.
And you really can't do 1 without the other unless you happen to be somebody who in apretty traumatic situation or stressful situation, sort of shoves all that down, puts on a
strong face, right?
(04:40):
Straightens out your spine and then just says, I'm gonna do what needs to be done.
Sort of like militant, go down the checklist, make sure everybody's taken care of.
that works for a while until you take a shower or you drive alone in your car or acommercial comes on TV and nobody's looking at you and then everything comes out, right,
which sort of surprises a lot of people, I think, if it's the first time that's happenedto them.
(05:06):
Yeah, I couldn't agree more and I think, you this is a perfect time to mention 1 of thereasons, 1 of the main reasons why IDS offers, you know, time out for caregivers because
it speaks to exactly that.
It is time out, hold up.
What have we just been through?
Because oftentimes it's, you know, not right when you're in that crisis mode of, you know,7, 8
(05:32):
months even or several weeks where you're like, okay, this is supposed to be hard.
It's almost like if you've experienced any type of postpartum, you know, mental healthdysregulation where it's like, okay, you know, it's supposed to be hard in the very
beginning, but why is it still hard?
And so when we talk about this timeout for caregivers program, really, it's just it's it'sa free monthly program where
(05:59):
We have an opportunity for people to listen, share their stories, gain knowledge, gainperspective.
It's usually a small group, 1.
(06:22):
anything else you want to add on timeout, Tavia?
Just, I think, just to reiterate what you said, know, 1 of the main reasons, there areseveral, but 1 of the main reasons we created it is because during our clinical visits
with clients, we work with many clients of parents, many clients who are parents orcaregivers of young children, and getting through to where the diabetes management skills,
knowledge, techniques are kind of a well-oiled machine.
so that they're more comfortable and less overwhelming.
A piece of that is emotional well-being and they're just, it's such...
(06:46):
It's just a common experience.
I don't want to say common as in boring, but I mean it happens to every person.
But you're the only person you know experiencing it so that that emotional burden and theweight that people are carrying around gets in the way of them being able to really learn
new concepts, execute new skills that might be sort of complex, that aren't superstraightforward or easy, very detail oriented steps that are needed to really navigate
(07:14):
type 1 diabetes for many
kids and so if somebody is feeling sorrowful feeling just super sad there's just no waythat that person's brain can learn all about some advanced features of an insulin pump
that they're looking at getting their child signed up with right you just you're
can't do that.
(07:35):
And so you need that emotional support and a big piece is I'm the only 1.
It was it's just such a common thing that we as diabetes educators were hearing over andover and processing with people and helping them through the processing phases but they
were doing it by themselves.
And we thought, you know, okay, I just talked to four moms in the last 2 days who saidsimilar things.
(08:01):
Why can't we have a space for them to get together where the focus isn't on how do youcarb count?
What about fiber?
What time should I bolus for this?
Not the execution of all the steps for diabetes management, but on the caregiver'swell-being.
And that's 1 of the, you hit the nail on the head, Tavia.
(08:21):
It is about, you know, it is, yes, the child.
I always refer to them if the child is the 1 living with type 1 as sort of this teamcaptain.
But when a kiddo is 2 or even 12, oftentimes 22.
you have a significant role as their number 1, you know, co-captain or cheerleader.
(08:42):
And if you're not okay emotionally, the likelihood of their blood sugar management is alsogonna be jeopardized or not managed in the way where you feel like, you know, you feel
like it could be better.
And the other thing I would add too is that,
(09:03):
You know, just because you feel like you've been at this maybe even for 5, six years, likehow come I'm still feeling this way?
Like you're allowed to feel however you want to feel when it comes to diabetes.
Like I say this in a lot of my talks, you know, everyone's sort of schedule of acceptingthe illness, know, it's, it's grief is not linear, right?
(09:24):
Like you could have a...
1 parent or a grandparent or a sibling be all about diabetes and then you know the kiddocould go into sort of burnout mode or just like resistance mode a year in where mom is at
the point of like okay you know trying to grapple with this and in an okay state and so
(09:49):
I think that is true for so much of the aspects of Type One when it comes to support andhow we incorporate everyone's feelings into 1 because we can't expect everyone to feel
exactly the same way at the same time throughout this journey.
And that is such a, it's an okay thing, but it's very hard to recognize and almost likeacknowledge.
(10:19):
And live through really.
even once you've acknowledged it and you've identified what's going on, if you're a parentand you're ready to roll, like you've grieved, you have accepted it, doesn't mean you like
it, now you're ready to like do the thing.
huh.
But if your spouse is still in denial, then that heaps a lot of burden on you because youhave to sort of field reality to your child and handle all of the steps that your spouse
(10:46):
isn't ready or willing to participate in.
And that way is heavy as well.
It's a common thing that comes up in a lot of our visits too, I think.
That and that, that.
situation where in many families there's 1 primary caregiver that takes theresponsibility.
The primary responsibility is another area that we talk through in Time Out forCaregivers.
(11:10):
In fact, sometimes we have sessions that are just geared on how do I distribute thatweight a little bit?
how can I, how do I give this up and keep my child safe?
Because that's of primary importance.
And the other piece is all the fears, I think.
There's just so many.
As a parent of any child, we can all list out a million fears we have about our kidswellbeing and safety, right?
(11:34):
Then you throw type 1 diabetes on top of it, and now you have whole new list, right?
Yeah.
Right?
Yeah.
And I think, unfortunately, a lot of...
people when we you'll hear me say this a lot I think you've probably heard me say it toomany times really One of the things that
(11:56):
I see is people are coming into our visits from a fear-based perspective.
All the what ifs and what they're worried about and many times it's not reality based.
But they don't know that no one's told them and they don't have the science behind whatthey're worried about.
So then out of target glucose levels like hypoglycemia episode one afternoon or a coupleof days where their child is growing and their glucose is just
(12:24):
off the charts elevated.
They're thinking in their mind all of these terrible things that are probably happening totheir child's future and that's not really reality based.
Mm-hmm.
think that's a huge stress relief when we can get there and really dissect like whatreally leads to long-term complications for people and what doesn't.
(12:44):
and what does every single blood sugar actually mean over a lifespan and what doesn't itmean?
I feel like that's a really big package that needs to be unwrapped for a lot of people sothat they can look at that reality
And honestly, Tavia, that is why we do what we do, right?
As clinicians, we're not in and out for 15 minutes because, again, these parents aremaking these dosing decisions, right?
(13:12):
And I think just to sort of like acknowledge what is reality, I mean, we are expecting ourparents, I mean, and ourselves, but we're talking about parents here, to basically play
the role
of an additional organ.
You know, we have our brain and our brain is like working in overdrive with type 1, butwe're also trying to mimic the hormone of insulin.
(13:36):
and fight all the other hormones that are playing along with it too, like cortisol andadrenaline and glucagon too, at the same time without a medical degree.
So it is a massive shift and this is the first time for many of these parents ever where
they're able to A.
(13:56):
share what's on their mind and B.
have someone process it because even if, and I love when people tell me that they'realready in therapy, which is great.
Even if you've been seeing a therapist or some type of mental health support, 9 times outof 10, parents will say to me, but like they don't get diabetes, but they don't get
(14:17):
diabetes.
And if you don't have someone who is so incredibly supportive of you that just
gets it, of course you're going to hide it.
Of course, like you're it's you're going to mask everything that is in here that you'retrying to direct and control for someone else.
(14:38):
Like it's insanity to think how much work that parents especially have to do with theirkids.
Like maybe your kids at school and you're like, well, I don't know.
Did they decide to buy lunch today?
I don't know what they ate.
Well, they're growing up.
So I hope
The nurse looks like they gave them insulin.
I don't know.
It's a lot of what if and a lot of self doubt.
(15:00):
But I hope if you're listening, you will maybe join us at 1 of our next time out programsbecause you can really unleash some of these emotions into a space where everyone truly
does get it.
Absolutely.
And another topic that comes up a lot in my visits is how to transition over time.
(15:27):
No, not right after a new diagnosis, but over time.
How do you transition some of the self-care?
Steps that are needed every day to the child who's growing up with type 1 diabetes and asa parent, what's their responsibility?
What's the child's responsibility?
How do you do that sort of gracefully with less fighting and not stressing people out?
(15:48):
How much should I push on this or how can we approach this so I don't stress them out thatcomes up really often?
And I think it's a really important topic because as a person who's not living with type 1diabetes, trying to manage another human body's diabetes, that's a time limited
(16:10):
experience, right?
So your whole goal as a parent is to raise a healthy child who can get out and participatein the rest of their life.
So you can't follow them around for the rest of their life saying that's 8 grams of carbs.
Do this kind of bolus for that 46 grams
of carbs that you're gonna eat at 7 p.m.
tonight, right?
And send an alarm at 2 a.m.
(16:30):
and see how your glucose is.
You can't, they wouldn't want you to do that and you can't do that forever.
So shifting through that, super stressful for a lot of families.
Yeah, I think honestly that is what I spend the majority of my sessions on is how do Italk these parents off of a fear cliff when it comes to their thought about...
(16:57):
Kiddo going away to school and having a severe low in the middle of the night or Godforbid studying abroad or getting on an airplane to go visit a relative somewhere when
they're a teenager.
It's What it is is this concept of new because every time we're making these, you know,little bitty jumps towards that like complete
(17:21):
independence, however you want to define that because it looks different for everyone, isit's new.
And I think that we don't recognize enough that like, it's hard when it's new, right?
The first week of school, that's a transition.
That's hard.
We're still in like the first month of school.
And that's hard.
(17:41):
So we have to acknowledge that
you the first time you get behind the wheel or the first time you're adding somethingdifferent to a diabetes routine, it's also going to be like a challenge for everyone.
And I think the, the, regardless of like,
getting a kid to understand bolusing, it comes down to communication.
(18:04):
And I think it's so much more important for the parent-child relationship for long-termmaintenance, for that to be the pivotal part of that transition, strong communication and
boundaries, rather than how many carbs are in 3 apple slices.
(18:25):
That's very transactional.
Cool.
Yeah.
Yeah.
but when it comes to building support and foundation and encouragement my biggest piece ofadvice is like make sure you're communicating with your kid in a way that you are
(18:46):
empowering them to
have critical thinking skills because that is what, for me anyway, and I know for kids,like, maintaining that relationship with their parents is key to, you know, building that
ability to self-advocate and maintain those skills for life.
(19:09):
For sure.
And I think sometimes as a parent it doesn't come naturally because you can see if youjust A and B then you'd have C.
Like why can't you A and B every day?
Why are we talking about this?
Right?
like that, right?
if you just did, if you just pre-bolused, everything would be great.
(19:29):
Well, no, like there's a hundred other reasons why your blood sugar could have done this.
And again too, when we talk about, you know, like the roles.
know, diabetes is always the 1 to blame.
there's that silly diabetes again doing what it wants to do, coming out of the woodwork.
You know, it's so easy to pinpoint a person than it is to pinpoint like an illness.
(19:56):
Yeah, like my son, for example, last week, he maybe that was 1 day time just flies and Idon't remember what day it someday recently.
It was Monday.
It was Monday.
So Monday, his glucose was down in the 50s at like 5 a.m.
and
Thinking about it later, it likely was because we did a hike in the afternoon and then heplayed soccer for an hour and a half in the evening.
(20:20):
And so he was just more sensitive to insulin overnight than he typically is.
So we fixed that problem and he ate breakfast and took his insulin and he was 42 at...
5 minutes to 8 when school was supposed to start.
It was the lowest glucose he's had in a long time and like out of the blue, none of us sawit coming.
(20:40):
And so in that moment, my first thought was, did he eat his breakfast?
Did he take his bolus and not eat breakfast?
Because that must be what caused it, right?
So I get in my mom head, absolutely, I text him and he's like, of course I ate breakfast.
Why are you even asking me that?
Yeah.
And I'm like, sorry, mom, it's a mom thing.
(21:01):
So he had to sit with the nurse and miss like 35 minutes of class and wait for his glucoseto come back after he treated it, right?
But it's just a really, it's so easy to flip into like, what did you do?
Why did you do that?
How did that happen?
Even for me, and I'm trained on this stuff, right?
So, you know, then later I had apologize to him.
(21:24):
Like, I didn't mean to ask it that way.
I just...
I was thinking in my head four more steps ahead, if you hadn't eaten, do I need to bringyou something?
Do you have something?
Like I was going down a whole list.
Not that I doubt your ability to self-manage.
That wasn't it.
And I got an eye roll and an okay, mom.
So, you know, we're back on track that way.
(21:44):
And I think we have to expect pushback in these like, you know, pivotal teen years, right?
I mean, it took me, I think, 5 different attempts to communicate with my children thismorning about teeth brushing.
And it's on their sort of, you know, like routine chart.
Do they look at the chart?
Questionable.
But they know it's muscle memory.
(22:06):
They know they have to do it.
It's part of their morning.
They just didn't want to do it.
And I think we all sort of like fight this battle.
It's just when it's something like diabetes and we spend so much time overcompensating, Ithink our fears and worries in terms of how are they coping, it's really about us as
(22:30):
caregivers.
Like, okay, time out.
again, time out, but how are we coping?
Because how we're coping is obviously gonna impact how we communicate about how we thinkthey're coping, but they might be completely separate.
And I think we don't do a good enough job at recognizing that the root of the issue, a lotof it lies in our own fears and not the kids' fears and anxieties.
(23:02):
Like you said earlier, let's do a reality check.
Is it actually true?
Yeah, it's important because our brains are pretty powerful and they can and if you have areally good imagination, I mean you can go down a path and just keep building it and
building it and then that's harder to get back from.
(23:23):
So reality checks are important.
I think another struggle that I see commonly is after diagnosis you go through this periodof time, especially if you don't know other families.
I think this experience seems to be different from what people have communicated.
during my visits with them if they happen to know other families with kids with type 1.
(23:44):
Like if it's in their family so their cousin has type 1 or their neighbor happens to orsomebody in their church group or something right and they feel comfortable talking with
those parents and the kid has other people that they see at least semi-regularly that are
checking blood sugars or wearing a sensor or pump or something.
(24:07):
But for those who don't have that experience,
I've seen where there's this process that happens where they attempt to share with theirnormal friends and family that they share other things with.
Like you have a friend probably that you could say, these really frustrating thingshappened to me today at work and you've got that person that you go to.
Or like I went to the grocery store and this really frustrating thing happened while on mydrive.
(24:31):
So there are certain people in your life that you relate frustrating things andchallenging things or I'm really overwhelmed right now in my life, you have you.
people right so then you come to them with type 1 diabetes but because of where we're atas a parent processing this we tend to over explain and we try to tell them or the person
(24:53):
hearing our message they're in the fix-it state so they're like we'll just get through itor it was just a 5 minute thing it'll be better tomorrow well no it won't because diabetes
is still here tomorrow right so then you get people get like
receiving the same type of information.
B, it's like not your kid.
we like that's a whole thing.
So where do you even begin?
(25:14):
You know, you've basically just spent 3, maybe days or 2 days or a handful of days gettinga crash course in the science of diabetes.
But now you have a life of applied science.
Now you have a life of like
application and it's going to take you a whole year of application for your regularlyscheduled program.
(25:41):
well, we've never done swimming before with type 1.
We've never done Halloween before.
We've never done showering, a birthday party, like all the things.
Diabetes is on a leash with you for life.
So that, you know, those first few months, like it is
It's a roller coaster and it is supposed to be, you know, it's kind of like motherhood.
(26:06):
People will say, it gets easier over time.
And like, it's true.
I have 2 kids.
My second one was definitely easier just because I knew what I was doing.
But it is so, so critical to be in touch with your own emotions and feel comfortableasking for help.
(26:29):
Because diabetes does warrant a lot of attention and if parents are not sleeping, we arenot gonna be nice people to our kids and then our kids are not gonna behave the way we
want them to or that they want to themselves.
And it is just a vicious cycle of frustration and blame and shame and all of that.
(26:52):
Where would you tell people who are maybe like,
3 days out from diagnosis and they're like going to Dr.
Google.
where do we, Other than IDS, obviously, Integrated Diabetes Services, but where else do weknow that people are turning to either right after diagnosis, whether you're 3, 13, 33, we
(27:19):
have patients of all ages.
Yeah.
I think it depends on what somebody's main focus of interest is.
Are they looking for therapeutics?
Are they looking for more evidence on some specific topic?
If so, then I'll route them to an appropriate, like an NIH study or maybe the AmericanDiabetes Association's clinical guidelines.
(27:43):
One excerpt from it that outlines that particular piece that they're puzzling out.
If they're looking for, aside from visits with our team,
of course.
Mm-hmm.
Then I typically send people to juice box podcast and with some caveats, right?
Like here's what you're talking about and a lot of times you can search and there's ashort list like these episodes go through Initial diagnosis and what you're gonna go
(28:11):
through and so on and so forth And then from there they refer to other resources andprograms, and then people start looking like children with diabetes is a good one
And I think that the now called Breakthrough T1D, that used to be JDRF, is an excellentone in that there may be other families living in the same region as you that may be
(28:34):
already interacting.
And there are some resources, educational resources that they have for free, but also apoint of contact.
And you can find out what is available locally plus virtually.
Those are other ones.
What about you?
I mean, all of those, I mean, I agree.
I think because of the pandemic, so much of our support is leaned online and virtually, isgreat, especially in those first several weeks where you are just head down in an
(29:06):
emotional wreck.
But some people, you know, they've got to go back to work and they've got to figure it allout.
I think it...
you don't have to look far and wide to find good support.
And I think from a local perspective, it is so incredibly important to find local supportand meetups.
(29:27):
And that is where, you know, I always recommend, yeah, social media with caution, but, youknow, be ready to put on the brakes if you're not getting what you need from it and you're
giving more than what you
really are receiving when it comes to the information from, from social media.
(29:49):
So, I would actually recommend, you know, if you're, if you go to like Boston Children'sor Children's Hospital of Philadelphia, a lot of them have Facebook groups or, where you
could
you know, hi, my name is so-and-so.
We were just diagnosed.
Please PM me if you have a kiddo in one of these surrounding towns, I would love to pickyour brain.
(30:12):
And it is a great way to meet people in your own individual community.
God forbid for supply sharing or whatnot.
But knowing you have some local support is so, so incredibly important.
The other thing that I don't...
think you mentioned was just camps and in-person conferences.
(30:35):
Virtual is great, but there's not, like you said, there's nothing better than seeing a T1Din the wild and being like, my God, they have a sensor or, my gosh, they have pump tubing.
And I even have my college roommates now will be like, tubing spotted at the mall, like430.
I'm like, you guys are great.
(30:56):
So, you know, going to diabetes camp or family programs or weekend events, they exist.
Sometimes you have to dig and find the right, you know, schedules and things that work foryou.
And you'll have to work a little bit to find them.
But it is out there and so incredibly important to build that early and often as younavigate, you know, all of the different transitions that come with type 1.
(31:23):
thought of a couple more while you were talking and I was listening, of course.
But also, Mom's Night Out is a great 1.
Yeah, and also The Link.
the next 1's coming up in October.
I think that's the last 1 for 2024, but it's in Philadelphia and it's like a sleepover formoms at a hotel.
(31:45):
I'll actually be at that 1 along with, know, Alicia Downs from our office doing these sortof like mental health check-ins where people can book time with us to just sort of share.
what's going on and offer some resources and support, but support is out there.
(32:08):
Don't be afraid to find like a therapist and don't be afraid to keep searching if youdon't like the support you're getting.
Absolutely, I agree.
It's and it's so important So don't the other don't like I don't usually boss peoplearound and tell them what to do and not you But in this case, I will say if you've been
dealing with navigating type 1 on your own and you haven't yet gotten any type of mentalhealth support, It's just such a game-changer for so many people I highly encourage that
(32:40):
if you can do it that just try it out.
You might be surprised at how much
negative emotions you're sort of squeezing in if you aren't, if they aren't bubbling overat the surface so it's painfully obvious for you but just having that ability to interact
with somebody that understands where you're coming from and get some support while younavigate some of the complex emotions of dealing with your own type 1 diabetes or that of
(33:07):
your child, there's just nothing like it.
There's nothing like it.
And just because you need it now may not mean that you need it in 6 months or in 5 years.
It doesn't have to be, it's not like your endocrinology visit where you're gonna go forthe rest of your life.
There's going to be times where mental health support is going to be more, hopefully amore prominent part of your world.
(33:31):
and don't fight your head and thinking that you don't need it because no one has ever saidto me, I wish I waited longer to reach out for, you know, one-on-one session.
That being said, I'm also gonna do a little plug that like we offer or I offer a 15minute, you know, free consultation.
(33:51):
So if you feel like you don't know or you're unsure, we always offer
an opportunity to connect with myself, to kind of share your emotions and see what theright direction is for future support with us.
Any last thoughts that you want to impart or because I feel like we shared quite a bit.
(34:13):
I mean, honestly, think it's find your support and keep them close because they are goingto be the people that you may end up leaning on for decades.
You know, this weekend I'm going to a diabetes camp reunion and some of these people Ihaven't seen in 20 years and.
can't wait.
(34:33):
Some people may call it a cult, it is.
But they're my people and they understand me in a way in which not a lot of other peopledo.
So it is a great atmosphere to be at even for 48 hours.
Beautiful.
Thank you so much, Anna.
It's been a pleasure.
love doing these.
(34:54):
We'll talk soon.
Okay.
Hello there, I am Tavia Vital.
I'm a registered nurse and a certified diabetes care and education specialist withIntegrated Diabetes Services.
And I am joined today by Anna Sabino.
Anna, why don't you go ahead and introduce yourself?
Hi, Tavia.
My name is Anna Sabino.
I am also a certified diabetes care and education specialist, have a master's in socialwork, and thrilled to be here on Think Like a Pancreas
(01:01):
Awesome, so we are so glad you guys are joining us today for our podcast.
We're gonna focus some time today talking about experiences of parents or caregivers whoare in charge of taking care of, supporting, educating about their child or teenager's
(01:21):
type 1 diabetes and what life is really like.
You know, what are the first things that pop in your mind when this topic comes up?
Yeah, I mean, I, as someone who provides a lot of mental health support, you know, all daylong, I think the first thing is just this grief process.
(01:42):
You know, so many clients will say to me, and I'm sure you too, Tavia, you know, I feellike...
I'm bringing a newborn home again.
Whether it is that sort of traumatic feeling of leaving the hospital with all the millionsof unknowns, it really is a fresh new start and a drastic shift in lifestyle that affects
(02:06):
the entire family.
Absolutely.
Yeah, and I think you know just depending on the age of a child.
How much familiarity somebody may have with the health care system in the first place?
Like has that family ever been in a hospital situation before have they gone to thepharmacy and filled a prescription before do they know anyone with type 1 diabetes or not?
(02:31):
even heard that term before?
I think, too Tavia, you're getting my wheels turning here.
There's so much shame and guilt that goes with any type of diagnosis.
Is it my fault?
Should I have brought her in sooner?
Or how did I miss this?
(02:54):
And this sort of grief process of could have, should have.
would have and sort of reliving that trauma is what I spend a lot of time talking with myfamilies about learning their story and really understanding, wow, this has been such a
(03:14):
massive
change and really rebirth in this sort of new life.
And as someone living with type 1, and I know you are too, for decades, to this day, evenas an adult, I always say that the burden of self-advocacy is still the hardest challenge
(03:36):
when it comes to diabetes, whether it is calling.
insurance company or Dexcom.
But when you're first diagnosed, it's like, I don't even know what I need.
I don't even know what to say because that burden is so strong.
Absolutely, and you're just not only are you burdened at the moment of diagnosis with thewhat to do next?
(03:58):
What do I do now?
What do I do next?
But then there's this amount of fear Right a huge amount of fear plus any emotional piecethat you might be experiencing if it's in the beginning of maybe Still in denial like this
can't be happening to our family, right?
This isn't right or maybe you jump straight to anger and you're just furious that this ishappening to your child
(04:20):
or 1 of many other emotions that people go through, makes the, how do I put 1 foot infront of the other, just that much more challenging.
And you really can't do 1 without the other unless you happen to be somebody who in apretty traumatic situation or stressful situation, sort of shoves all that down, puts on a
strong face, right?
(04:40):
Straightens out your spine and then just says, I'm gonna do what needs to be done.
Sort of like militant, go down the checklist, make sure everybody's taken care of.
that works for a while until you take a shower or you drive alone in your car or acommercial comes on TV and nobody's looking at you and then everything comes out, right,
which sort of surprises a lot of people, I think, if it's the first time that's happenedto them.
(05:06):
Yeah, I couldn't agree more and I think, you this is a perfect time to mention 1 of thereasons, 1 of the main reasons why IDS offers, you know, time out for caregivers because
it speaks to exactly that.
It is time out, hold up.
What have we just been through?
Because oftentimes it's, you know, not right when you're in that crisis mode of, you know,7, 8
(05:32):
months even or several weeks where you're like, okay, this is supposed to be hard.
It's almost like if you've experienced any type of postpartum, you know, mental healthdysregulation where it's like, okay, you know, it's supposed to be hard in the very
beginning, but why is it still hard?
And so when we talk about this timeout for caregivers program, really, it's just it's it'sa free monthly program where
(05:59):
We have an opportunity for people to listen, share their stories, gain knowledge, gainperspective.
It's usually a small group, 1.
(06:22):
anything else you want to add on timeout, Tavia?
Just, I think, just to reiterate what you said, know, 1 of the main reasons, there areseveral, but 1 of the main reasons we created it is because during our clinical visits
with clients, we work with many clients of parents, many clients who are parents orcaregivers of young children, and getting through to where the diabetes management skills,
knowledge, techniques are kind of a well-oiled machine.
so that they're more comfortable and less overwhelming.
A piece of that is emotional well-being and they're just, it's such...
(06:46):
It's just a common experience.
I don't want to say common as in boring, but I mean it happens to every person.
But you're the only person you know experiencing it so that that emotional burden and theweight that people are carrying around gets in the way of them being able to really learn
new concepts, execute new skills that might be sort of complex, that aren't superstraightforward or easy, very detail oriented steps that are needed to really navigate
(07:14):
type 1 diabetes for many
kids and so if somebody is feeling sorrowful feeling just super sad there's just no waythat that person's brain can learn all about some advanced features of an insulin pump
that they're looking at getting their child signed up with right you just you're
can't do that.
(07:35):
And so you need that emotional support and a big piece is I'm the only 1.
It was it's just such a common thing that we as diabetes educators were hearing over andover and processing with people and helping them through the processing phases but they
were doing it by themselves.
And we thought, you know, okay, I just talked to four moms in the last 2 days who saidsimilar things.
(08:01):
Why can't we have a space for them to get together where the focus isn't on how do youcarb count?
What about fiber?
What time should I bolus for this?
Not the execution of all the steps for diabetes management, but on the caregiver'swell-being.
And that's 1 of the, you hit the nail on the head, Tavia.
(08:21):
It is about, you know, it is, yes, the child.
I always refer to them if the child is the 1 living with type 1 as sort of this teamcaptain.
But when a kiddo is 2 or even 12, oftentimes 22.
you have a significant role as their number 1, you know, co-captain or cheerleader.
(08:42):
And if you're not okay emotionally, the likelihood of their blood sugar management is alsogonna be jeopardized or not managed in the way where you feel like, you know, you feel
like it could be better.
And the other thing I would add too is that,
(09:03):
You know, just because you feel like you've been at this maybe even for 5, six years, likehow come I'm still feeling this way?
Like you're allowed to feel however you want to feel when it comes to diabetes.
Like I say this in a lot of my talks, you know, everyone's sort of schedule of acceptingthe illness, know, it's, it's grief is not linear, right?
(09:24):
Like you could have a...
1 parent or a grandparent or a sibling be all about diabetes and then you know the kiddocould go into sort of burnout mode or just like resistance mode a year in where mom is at
the point of like okay you know trying to grapple with this and in an okay state and so
(09:49):
I think that is true for so much of the aspects of Type One when it comes to support andhow we incorporate everyone's feelings into 1 because we can't expect everyone to feel
exactly the same way at the same time throughout this journey.
And that is such a, it's an okay thing, but it's very hard to recognize and almost likeacknowledge.
(10:19):
And live through really.
even once you've acknowledged it and you've identified what's going on, if you're a parentand you're ready to roll, like you've grieved, you have accepted it, doesn't mean you like
it, now you're ready to like do the thing.
huh.
But if your spouse is still in denial, then that heaps a lot of burden on you because youhave to sort of field reality to your child and handle all of the steps that your spouse
(10:46):
isn't ready or willing to participate in.
And that way is heavy as well.
It's a common thing that comes up in a lot of our visits too, I think.
That and that, that.
situation where in many families there's 1 primary caregiver that takes theresponsibility.
The primary responsibility is another area that we talk through in Time Out forCaregivers.
(11:10):
In fact, sometimes we have sessions that are just geared on how do I distribute thatweight a little bit?
how can I, how do I give this up and keep my child safe?
Because that's of primary importance.
And the other piece is all the fears, I think.
There's just so many.
As a parent of any child, we can all list out a million fears we have about our kidswellbeing and safety, right?
(11:34):
Then you throw type 1 diabetes on top of it, and now you have whole new list, right?
Yeah.
Right?
Yeah.
And I think, unfortunately, a lot of...
people when we you'll hear me say this a lot I think you've probably heard me say it toomany times really One of the things that
(11:56):
I see is people are coming into our visits from a fear-based perspective.
All the what ifs and what they're worried about and many times it's not reality based.
But they don't know that no one's told them and they don't have the science behind whatthey're worried about.
So then out of target glucose levels like hypoglycemia episode one afternoon or a coupleof days where their child is growing and their glucose is just
(12:24):
off the charts elevated.
They're thinking in their mind all of these terrible things that are probably happening totheir child's future and that's not really reality based.
Mm-hmm.
think that's a huge stress relief when we can get there and really dissect like whatreally leads to long-term complications for people and what doesn't.
(12:44):
and what does every single blood sugar actually mean over a lifespan and what doesn't itmean?
I feel like that's a really big package that needs to be unwrapped for a lot of people sothat they can look at that reality
And honestly, Tavia, that is why we do what we do, right?
As clinicians, we're not in and out for 15 minutes because, again, these parents aremaking these dosing decisions, right?
(13:12):
And I think just to sort of like acknowledge what is reality, I mean, we are expecting ourparents, I mean, and ourselves, but we're talking about parents here, to basically play
the role
of an additional organ.
You know, we have our brain and our brain is like working in overdrive with type 1, butwe're also trying to mimic the hormone of insulin.
(13:36):
and fight all the other hormones that are playing along with it too, like cortisol andadrenaline and glucagon too, at the same time without a medical degree.
So it is a massive shift and this is the first time for many of these parents ever where
they're able to A.
(13:56):
share what's on their mind and B.
have someone process it because even if, and I love when people tell me that they'realready in therapy, which is great.
Even if you've been seeing a therapist or some type of mental health support, 9 times outof 10, parents will say to me, but like they don't get diabetes, but they don't get
(14:17):
diabetes.
And if you don't have someone who is so incredibly supportive of you that just
gets it, of course you're going to hide it.
Of course, like you're it's you're going to mask everything that is in here that you'retrying to direct and control for someone else.
(14:38):
Like it's insanity to think how much work that parents especially have to do with theirkids.
Like maybe your kids at school and you're like, well, I don't know.
Did they decide to buy lunch today?
I don't know what they ate.
Well, they're growing up.
So I hope
The nurse looks like they gave them insulin.
I don't know.
It's a lot of what if and a lot of self doubt.
(15:00):
But I hope if you're listening, you will maybe join us at 1 of our next time out programsbecause you can really unleash some of these emotions into a space where everyone truly
does get it.
Absolutely.
And another topic that comes up a lot in my visits is how to transition over time.
(15:27):
No, not right after a new diagnosis, but over time.
How do you transition some of the self-care?
Steps that are needed every day to the child who's growing up with type 1 diabetes and asa parent, what's their responsibility?
What's the child's responsibility?
How do you do that sort of gracefully with less fighting and not stressing people out?
(15:48):
How much should I push on this or how can we approach this so I don't stress them out thatcomes up really often?
And I think it's a really important topic because as a person who's not living with type 1diabetes, trying to manage another human body's diabetes, that's a time limited
(16:10):
experience, right?
So your whole goal as a parent is to raise a healthy child who can get out and participatein the rest of their life.
So you can't follow them around for the rest of their life saying that's 8 grams of carbs.
Do this kind of bolus for that 46 grams
of carbs that you're gonna eat at 7 p.m.
tonight, right?
And send an alarm at 2 a.m.
(16:30):
and see how your glucose is.
You can't, they wouldn't want you to do that and you can't do that forever.
So shifting through that, super stressful for a lot of families.
Yeah, I think honestly that is what I spend the majority of my sessions on is how do Italk these parents off of a fear cliff when it comes to their thought about...
(16:57):
Kiddo going away to school and having a severe low in the middle of the night or Godforbid studying abroad or getting on an airplane to go visit a relative somewhere when
they're a teenager.
It's What it is is this concept of new because every time we're making these, you know,little bitty jumps towards that like complete
(17:21):
independence, however you want to define that because it looks different for everyone, isit's new.
And I think that we don't recognize enough that like, it's hard when it's new, right?
The first week of school, that's a transition.
That's hard.
We're still in like the first month of school.
And that's hard.
(17:41):
So we have to acknowledge that
you the first time you get behind the wheel or the first time you're adding somethingdifferent to a diabetes routine, it's also going to be like a challenge for everyone.
And I think the, the, regardless of like,
getting a kid to understand bolusing, it comes down to communication.
(18:04):
And I think it's so much more important for the parent-child relationship for long-termmaintenance, for that to be the pivotal part of that transition, strong communication and
boundaries, rather than how many carbs are in 3 apple slices.
(18:25):
That's very transactional.
Cool.
Yeah.
Yeah.
but when it comes to building support and foundation and encouragement my biggest piece ofadvice is like make sure you're communicating with your kid in a way that you are
(18:46):
empowering them to
have critical thinking skills because that is what, for me anyway, and I know for kids,like, maintaining that relationship with their parents is key to, you know, building that
ability to self-advocate and maintain those skills for life.
(19:09):
For sure.
And I think sometimes as a parent it doesn't come naturally because you can see if youjust A and B then you'd have C.
Like why can't you A and B every day?
Why are we talking about this?
Right?
like that, right?
if you just did, if you just pre-bolused, everything would be great.
(19:29):
Well, no, like there's a hundred other reasons why your blood sugar could have done this.
And again too, when we talk about, you know, like the roles.
know, diabetes is always the 1 to blame.
there's that silly diabetes again doing what it wants to do, coming out of the woodwork.
You know, it's so easy to pinpoint a person than it is to pinpoint like an illness.
(19:56):
Yeah, like my son, for example, last week, he maybe that was 1 day time just flies and Idon't remember what day it someday recently.
It was Monday.
It was Monday.
So Monday, his glucose was down in the 50s at like 5 a.m.
and
Thinking about it later, it likely was because we did a hike in the afternoon and then heplayed soccer for an hour and a half in the evening.
(20:20):
And so he was just more sensitive to insulin overnight than he typically is.
So we fixed that problem and he ate breakfast and took his insulin and he was 42 at...
5 minutes to 8 when school was supposed to start.
It was the lowest glucose he's had in a long time and like out of the blue, none of us sawit coming.
(20:40):
And so in that moment, my first thought was, did he eat his breakfast?
Did he take his bolus and not eat breakfast?
Because that must be what caused it, right?
So I get in my mom head, absolutely, I text him and he's like, of course I ate breakfast.
Why are you even asking me that?
Yeah.
And I'm like, sorry, mom, it's a mom thing.
(21:01):
So he had to sit with the nurse and miss like 35 minutes of class and wait for his glucoseto come back after he treated it, right?
But it's just a really, it's so easy to flip into like, what did you do?
Why did you do that?
How did that happen?
Even for me, and I'm trained on this stuff, right?
So, you know, then later I had apologize to him.
(21:24):
Like, I didn't mean to ask it that way.
I just...
I was thinking in my head four more steps ahead, if you hadn't eaten, do I need to bringyou something?
Do you have something?
Like I was going down a whole list.
Not that I doubt your ability to self-manage.
That wasn't it.
And I got an eye roll and an okay, mom.
So, you know, we're back on track that way.
(21:44):
And I think we have to expect pushback in these like, you know, pivotal teen years, right?
I mean, it took me, I think, 5 different attempts to communicate with my children thismorning about teeth brushing.
And it's on their sort of, you know, like routine chart.
Do they look at the chart?
Questionable.
But they know it's muscle memory.
(22:06):
They know they have to do it.
It's part of their morning.
They just didn't want to do it.
And I think we all sort of like fight this battle.
It's just when it's something like diabetes and we spend so much time overcompensating, Ithink our fears and worries in terms of how are they coping, it's really about us as
(22:30):
caregivers.
Like, okay, time out.
again, time out, but how are we coping?
Because how we're coping is obviously gonna impact how we communicate about how we thinkthey're coping, but they might be completely separate.
And I think we don't do a good enough job at recognizing that the root of the issue, a lotof it lies in our own fears and not the kids' fears and anxieties.
(23:02):
Like you said earlier, let's do a reality check.
Is it actually true?
Yeah, it's important because our brains are pretty powerful and they can and if you have areally good imagination, I mean you can go down a path and just keep building it and
building it and then that's harder to get back from.
(23:23):
So reality checks are important.
I think another struggle that I see commonly is after diagnosis you go through this periodof time, especially if you don't know other families.
I think this experience seems to be different from what people have communicated.
during my visits with them if they happen to know other families with kids with type 1.
(23:44):
Like if it's in their family so their cousin has type 1 or their neighbor happens to orsomebody in their church group or something right and they feel comfortable talking with
those parents and the kid has other people that they see at least semi-regularly that are
checking blood sugars or wearing a sensor or pump or something.
(24:07):
But for those who don't have that experience,
I've seen where there's this process that happens where they attempt to share with theirnormal friends and family that they share other things with.
Like you have a friend probably that you could say, these really frustrating thingshappened to me today at work and you've got that person that you go to.
Or like I went to the grocery store and this really frustrating thing happened while on mydrive.
(24:31):
So there are certain people in your life that you relate frustrating things andchallenging things or I'm really overwhelmed right now in my life, you have you.
people right so then you come to them with type 1 diabetes but because of where we're atas a parent processing this we tend to over explain and we try to tell them or the person
(24:53):
hearing our message they're in the fix-it state so they're like we'll just get through itor it was just a 5 minute thing it'll be better tomorrow well no it won't because diabetes
is still here tomorrow right so then you get people get like
receiving the same type of information.
B, it's like not your kid.
we like that's a whole thing.
So where do you even begin?
(25:14):
You know, you've basically just spent 3, maybe days or 2 days or a handful of days gettinga crash course in the science of diabetes.
But now you have a life of applied science.
Now you have a life of like
application and it's going to take you a whole year of application for your regularlyscheduled program.
(25:41):
well, we've never done swimming before with type 1.
We've never done Halloween before.
We've never done showering, a birthday party, like all the things.
Diabetes is on a leash with you for life.
So that, you know, those first few months, like it is
It's a roller coaster and it is supposed to be, you know, it's kind of like motherhood.
(26:06):
People will say, it gets easier over time.
And like, it's true.
I have 2 kids.
My second one was definitely easier just because I knew what I was doing.
But it is so, so critical to be in touch with your own emotions and feel comfortableasking for help.
(26:29):
Because diabetes does warrant a lot of attention and if parents are not sleeping, we arenot gonna be nice people to our kids and then our kids are not gonna behave the way we
want them to or that they want to themselves.
And it is just a vicious cycle of frustration and blame and shame and all of that.
(26:52):
Where would you tell people who are maybe like,
3 days out from diagnosis and they're like going to Dr.
Google.
where do we, Other than IDS, obviously, Integrated Diabetes Services, but where else do weknow that people are turning to either right after diagnosis, whether you're 3, 13, 33, we
(27:19):
have patients of all ages.
Yeah.
I think it depends on what somebody's main focus of interest is.
Are they looking for therapeutics?
Are they looking for more evidence on some specific topic?
If so, then I'll route them to an appropriate, like an NIH study or maybe the AmericanDiabetes Association's clinical guidelines.
(27:43):
One excerpt from it that outlines that particular piece that they're puzzling out.
If they're looking for, aside from visits with our team,
of course.
Mm-hmm.
Then I typically send people to juice box podcast and with some caveats, right?
Like here's what you're talking about and a lot of times you can search and there's ashort list like these episodes go through Initial diagnosis and what you're gonna go
(28:11):
through and so on and so forth And then from there they refer to other resources andprograms, and then people start looking like children with diabetes is a good one
And I think that the now called Breakthrough T1D, that used to be JDRF, is an excellentone in that there may be other families living in the same region as you that may be
(28:34):
already interacting.
And there are some resources, educational resources that they have for free, but also apoint of contact.
And you can find out what is available locally plus virtually.
Those are other ones.
What about you?
I mean, all of those, I mean, I agree.
I think because of the pandemic, so much of our support is leaned online and virtually, isgreat, especially in those first several weeks where you are just head down in an
(29:06):
emotional wreck.
But some people, you know, they've got to go back to work and they've got to figure it allout.
I think it...
you don't have to look far and wide to find good support.
And I think from a local perspective, it is so incredibly important to find local supportand meetups.
(29:27):
And that is where, you know, I always recommend, yeah, social media with caution, but, youknow, be ready to put on the brakes if you're not getting what you need from it and you're
giving more than what you
really are receiving when it comes to the information from, from social media.
(29:49):
So, I would actually recommend, you know, if you're, if you go to like Boston Children'sor Children's Hospital of Philadelphia, a lot of them have Facebook groups or, where you
could
you know, hi, my name is so-and-so.
We were just diagnosed.
Please PM me if you have a kiddo in one of these surrounding towns, I would love to pickyour brain.
(30:12):
And it is a great way to meet people in your own individual community.
God forbid for supply sharing or whatnot.
But knowing you have some local support is so, so incredibly important.
The other thing that I don't...
think you mentioned was just camps and in-person conferences.
(30:35):
Virtual is great, but there's not, like you said, there's nothing better than seeing a T1Din the wild and being like, my God, they have a sensor or, my gosh, they have pump tubing.
And I even have my college roommates now will be like, tubing spotted at the mall, like430.
I'm like, you guys are great.
(30:56):
So, you know, going to diabetes camp or family programs or weekend events, they exist.
Sometimes you have to dig and find the right, you know, schedules and things that work foryou.
And you'll have to work a little bit to find them.
But it is out there and so incredibly important to build that early and often as younavigate, you know, all of the different transitions that come with type 1.
(31:23):
thought of a couple more while you were talking and I was listening, of course.
But also, Mom's Night Out is a great 1.
Yeah, and also The Link.
the next 1's coming up in October.
I think that's the last 1 for 2024, but it's in Philadelphia and it's like a sleepover formoms at a hotel.
(31:45):
I'll actually be at that 1 along with, know, Alicia Downs from our office doing these sortof like mental health check-ins where people can book time with us to just sort of share.
what's going on and offer some resources and support, but support is out there.
(32:08):
Don't be afraid to find like a therapist and don't be afraid to keep searching if youdon't like the support you're getting.
Absolutely, I agree.
It's and it's so important So don't the other don't like I don't usually boss peoplearound and tell them what to do and not you But in this case, I will say if you've been
dealing with navigating type 1 on your own and you haven't yet gotten any type of mentalhealth support, It's just such a game-changer for so many people I highly encourage that
(32:40):
if you can do it that just try it out.
You might be surprised at how much
negative emotions you're sort of squeezing in if you aren't, if they aren't bubbling overat the surface so it's painfully obvious for you but just having that ability to interact
with somebody that understands where you're coming from and get some support while younavigate some of the complex emotions of dealing with your own type 1 diabetes or that of
(33:07):
your child, there's just nothing like it.
There's nothing like it.
And just because you need it now may not mean that you need it in 6 months or in 5 years.
It doesn't have to be, it's not like your endocrinology visit where you're gonna go forthe rest of your life.
There's going to be times where mental health support is going to be more, hopefully amore prominent part of your world.
(33:31):
and don't fight your head and thinking that you don't need it because no one has ever saidto me, I wish I waited longer to reach out for, you know, one-on-one session.
That being said, I'm also gonna do a little plug that like we offer or I offer a 15minute, you know, free consultation.
(33:51):
So if you feel like you don't know or you're unsure, we always offer
an opportunity to connect with myself, to kind of share your emotions and see what theright direction is for future support with us.
Any last thoughts that you want to impart or because I feel like we shared quite a bit.
(34:13):
I mean, honestly, think it's find your support and keep them close because they are goingto be the people that you may end up leaning on for decades.
You know, this weekend I'm going to a diabetes camp reunion and some of these people Ihaven't seen in 20 years and.
can't wait.
(34:33):
Some people may call it a cult, it is.
But they're my people and they understand me in a way in which not a lot of other peopledo.
So it is a great atmosphere to be at even for 48 hours.
Beautiful.
Thank you so much, Anna.
It's been a pleasure.
love doing these.
(34:54):
We'll talk soon.
Okay.
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Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
The Clay Travis and Buck Sexton Show
The Clay Travis and Buck Sexton Show. Clay Travis and Buck Sexton tackle the biggest stories in news, politics and current events with intelligence and humor. From the border crisis, to the madness of cancel culture and far-left missteps, Clay and Buck guide listeners through the latest headlines and hot topics with fun and entertaining conversations and opinions.