Pina Barbieri, social worker and a mother of a young adult who lives with Type 1 diabetes shares her experiences raising her daughter, unpacks what it means to be a caregiver, and reframes the concept of “caregiver burnout”, while providing tips and strategies to thrive in the face of supporting loved ones with diabetes.
Speaker: Pina Barbieri, MSW
Speaker: Pina Barbieri, MSW
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series in this episode we will hear from0:46
Pina Barbieri a mother of a young adult0:49
who lives with type 1 diabetes she's0:51
also a social worker an educator and0:54
diabetes Canada was very fortunate to0:56
have her as a volunteer for our decamps0:58
program not only not only will Pina1:00
share with us her experiences raising1:02
her daughter but she'll also unpack what1:04
it means to be a caregiver and reframe1:06
the concept of caregiver burnout she1:09
will also provide tips and strategies to1:11
thrive in the face of supporting loved1:13
ones with diabetes using both her1:15
personal and professional perspectives1:18
this video is supported by an1:19
unrestricted educational grant from copi1:23
we hope after watching this video that1:24
you will gain a greater understanding of1:26
how families are impacted by a diabetes1:29
diagnosis1:30
and a deeper appreciation of what1:32
contributes to caregivers experiencing1:34
stress and burnout as well as strategies1:36
for dealing with all that being a1:38
diabetes caregiver entails we also want1:41
to let you know that some of the content1:43
in this video may be difficult to hear1:46
and may trigger some intense emotions we1:48
encourage you to seek support and or1:50
stop the video If you find yourself1:52
reacting to the content in a distressing1:54
way we recognize that the content in1:57
this video may not be relevant for1:58
everyone and will depend on what your2:00
experience with diabetes is and what2:02
devices are available to you where you2:04
live if you have specific questions2:06
about diabetes management please reach2:08
out to your Healthcare team these videos2:11
are for educational purposes only the2:14
content discussed in this video is not2:16
intended to be medical advice and to the2:18
extent that medical advice is required2:20
you should consult with a qualified2:22
medical professional the information2:24
discussed in this video cannot replace2:26
consultations with qualified Healthcare2:28
professionals to meet your individual2:30
medical needs the views and opinions2:33
expressed in this video are those of the2:34
speakers and do not necessarily reflect2:36
the views or positions of diabetes2:39
Canada as always we hope that this video2:41
Sparks your interest in learning more2:43
about diabetes management and now over2:45
to our guest speaker Pina welcome to2:49
unpacking caregiving um this is a2:52
recording for caregivers of children2:54
living with type 1 diabetes I think you2:56
can see beside me a list of words3:00
and wow those are a lot of words these3:03
are words that describe a journey that3:05
some of us are on as caregivers to our3:07
children or siblings or grandchildren or3:09
whichever way you come by providing care3:11
for someone who lives with type 13:13
diabetes some of the words are actually3:15
opposites like balancing and juggling3:19
being proactive but also reactive3:21
grieving but also holding hope being sad3:25
and proud smiling and crying keeping3:29
things stable3:30
while everything around you is changing3:33
do any of these words resonate with3:35
you now I'd like you to imagine a world3:38
where your role as a caregiver suddenly3:41
changed almost overnight to include all3:44
these new job descriptions added to your3:46
already full plate new roles like3:48
mathematician working out those isfs do3:51
I increase insulin sensitivity do I3:53
decrease it to make it stronger I still3:56
have to take a minute and walk myself3:57
through that one new roles like a4:00
pharmacist learning about new4:01
medications a doctor making dosing4:03
decisions a nurse administering insulin4:06
injection a therapist helping curb4:09
anxieties and supporting your kids4:10
through some really really sad times an4:14
IT expert building your own webites and4:16
apps a data manager combing over4:18
thousands of blood sugars looking for4:20
patterns an EMT running to crisis calls4:24
I'm not sure I'd sign up for this job it4:26
actually sounds pretty4:28
hard4:30
my child's name is Laura and she's been4:32
living with type 1 diabetes for the past4:34
10 years Her diagnosis was lifechanging4:37
for her and real changing for me my4:40
name's Pina and I'm the caregiver of a4:42
child living with type one I'd like to4:45
spend some time with you today unpacking4:47
the caregiver experience as it relates4:50
to type 1 diabetes in my spare time I'm4:53
also a social worker so I'd like to4:54
share some strategies and tips that can4:56
help us navigate the everchanging4:58
landscape of of caring for someone that5:01
we love who lives with type5:04
one if you're the caregiver of a child a5:07
young adult or even an adult living with5:09
type one you may have experienced a5:10
variety of what I like to call ages and5:12
stages of the diabetes Journey that5:15
first year that was a tough one I'm sure5:18
a lot of us remember diagnosis some of5:21
us may have that day emblazoned in our5:22
memory others may remember it in bits5:25
and pieces and others may even struggle5:27
to bring some of those difficult5:28
memories to the surface5:31
Switching gears from that freedom that5:32
came with the working pancreas to being5:34
aware of every single carbohydrate that5:37
your child put in their mouth and all5:40
those carbohydrates those countless carb5:42
counts changed how we viewed food and5:45
meals those first few days then months5:48
and maybe even years for some of us the5:50
day-to-day stress that lasted year to5:52
year packing the diabetes bag making5:54
sure you have juice or glucagon or5:56
insulin extra pods extra meters5:59
navigating healthare systems and6:00
appointments for some the added stress6:03
of other autoimmune ill illnesses just6:05
compounded the caregiver6:08
role having a child diagnosed at two6:11
versus a child diagnosed as a teen6:12
through different spins into how some of6:14
us had to Pivot with diagnosis and with6:16
life so many variables and factors6:19
affected us too many to list6:22
actually and just like no two person's6:25
diabetes is the same no two caregivers6:27
will have the same experience they is no6:29
way we can cover every single experience6:32
and emotion in these 20 minutes but what6:35
I hope to leave you with here is the6:37
safety to start the discussion of what6:39
it means to be a t1d caregiver to bring6:43
awareness and unpack this journey that6:45
we're on and highlight some strategies6:47
to help us find balance within our own6:49
selves but most of all most of all I6:52
hope you leave here with the reminder to6:54
be kind to yourself as a caregiver in6:56
the world of type6:58
one so remember that word cloud with all7:01
the added jobs and new expectations that7:03
came with the type 1 diagnosis well this7:05
is us in our house 24 hours after our7:07
daughter's diagnosis where we went from7:10
a healthy child to a child with a7:11
lifelong disease we were trying to7:14
balance all that had changed in our7:16
daughter's life and all our new roles7:18
with some normaly so we thought why not7:20
have a Friday night just dance party on7:22
day two of7:25
diabetes putting our child's needs7:27
before our own needs to grieve that was7:29
important to us I remember our Clinic7:32
telling us kid first diabetes second and7:35
that really resonated with me absolutely7:38
this made7:39
sense but at the same time I thought how7:42
in the world was I going to fit diabetes7:45
and everything that came with it into a7:48
childhood and so here begins that7:50
Journey that we as caregivers feel7:52
compelled to go on taking on the7:54
physical mental emotional and social7:56
impacts of type one on top of everything7:59
else we8:01
do a type 1 diagnosis is life-changing8:04
and it brings with it so many stressors8:06
and worries the stress and anticipation8:09
of blood work appointments worries about8:11
school and educating School staff on8:13
your child's diabetes working with8:14
Community organizations to put nursing8:17
staff in place to help our youngest kids8:19
stay safe at school or helping our older8:22
kids navigate this lifechanging event by8:24
putting IEP accommodations in8:26
place as life keeps moving and you start8:29
to figure out what used to be easy like8:32
birthday parties kids sports family8:34
vacations and sleepovers and gosh I8:37
remember heck even just putting your8:38
child to bed became stressful with8:40
worries about nighttime blood8:43
sugars then in her life stages like8:45
puberty driver's licenses first jobs8:48
transitioning from pediatric to adult8:50
diabetes care and moving away to college8:52
or university life can get very bumpy8:56
with diabetes and while you're working8:58
hard to juggle care in for your child9:00
you often do this at your own expense oh9:02
and did I mention9:04
sleep you're doing all of this on less9:06
sleep than the average person needs9:08
because diabetes doesn't go away at9:09
night and lack of sleep correlates with9:12
decreased focusing decreased9:15
productivity increased depression9:17
symptoms increased irritability and9:19
increased physical health problems not9:22
what we type 1 caregivers9:24
need and then just when you think you've9:26
got the hang of things boom something9:28
else happens a really bad low blood9:30
sugar ketones from high blood sugar or9:33
even just a reminder that sometimes9:34
diabetes takes precedence over being a9:36
kid and that sends you back into the9:39
reality and grief of this disease9:41
there's actually a term called chronic9:43
sorrow that's described as an9:45
intermittent grief reaction that can9:47
happen with certain triggers even years9:49
after a type 1D diagnosis for both kids9:52
and9:54
caregivers and our kids are heroes9:57
everyday Heroes absolutely absolutely no10:00
debate but we caregivers are pretty10:02
awesome too kind of are every superhero10:05
we're Batman jumping in action when we10:07
see that dexc combat signal pop up in10:09
the middle of the night we're Wonder10:11
Woman deflecting those low blood sugars10:13
with juuice boxes in hand and we're the10:15
Hulk rage bising those stubborn highs10:18
and we're Superman whose Kryptonite is10:21
the unpredictability that comes with10:23
diabetes and renders us feeling10:25
powerless at times we are Spider-Man10:28
prepared to scale a building if we have10:31
to get to our child having a blood sugar10:32
emergency I know I've driven a little10:34
too fast trying to get to my daughter at10:37
school we're Iron Man equipped with10:39
every Tech Gadget known to man and even10:41
some DIY and we are even full-time blood10:45
sugar ninjas only because type 1D mom is10:49
not an official job10:52
title yes we're all these superheroes10:54
but we're also human and frankly being10:57
even just one superhero can leave us10:59
feeling11:01
exhausted actually we're not just11:03
exhausted caregiving can leave us with a11:05
lot of other feelings as well a lot of11:07
us have seen the iceberg analogy in11:09
relation to anger or even diabetes but11:12
has anyone ever thought what it would11:13
look like for us the type 1D caregivers11:16
I took a shot at creating one since I11:17
couldn't find one based on my own11:20
experiences notice what's above the11:22
surface what everyone sees or what we11:24
want everyone to see us as calm11:27
confident coping and control11:30
and then what's below the surface maybe11:32
what we don't want anyone to see what we11:33
try to hide the tough stuff like fear11:36
and guilt and anger sadness anxiety and11:40
loss of11:42
control the reality is that managing11:45
your child's chronic illness and11:47
potentially caring for other children11:48
and managing your own physical and11:50
mental health managing your family and11:52
your relationships in your career is a11:54
recipe for what is often described as11:56
caregiver burnout burnout is defined in11:59
the Webster's Dictionary as exhaustion a12:02
physical or emotional strength or12:04
motivation usually as a result of12:06
prolonged stress or12:09
frustration boy that doesn't sound great12:11
does it there are so many associations12:14
with that term burnout for a lot of us I12:16
know there are for me especially when12:18
we're talking about caring for our kids12:20
are we even allowed to feel exhausted or12:23
does that mean we failed or we're not12:25
good enough some of us may even end up12:27
feeling more guilt and May even shame so12:29
much so that we end up not reaching out12:31
and asking for12:32
help I wish we could find another name12:35
for this burnout term I've thought of12:36
this long and hard some of these words12:39
fit12:40
fatigue uh overload depletion drain12:44
exhaustion but there really isn't one12:46
word that captures it adequately12:48
diabetes is after all a disease and that12:51
term dis ease literally means the12:54
absence of ease it's not meant to be12:57
easy we're going to have ups and downs12:59
kind of like blood sugar and some days13:01
boy some days I know I felt like a rock13:03
star hitting those blood sugar targets13:05
getting boluses on point and then boom13:08
diabetes threw one of its everpresent13:10
curveballs and left me feeling defeated13:12
deflated and13:14
incompetent remember that burnout13:16
definition from earlier the one about13:17
being exhausted because of prolonged13:19
stress and frustration well this makes13:21
sense doesn't it prolonged stress and13:23
frustration can go hand inand with13:26
diabetes that's another word we should13:28
consider prolonged or chronic add that13:31
to disease and you have chronic lack of13:34
ease it never13:37
relents so what can we do how do we13:39
navigate it and notice I didn't say13:41
prevent it because burnout is real it's13:45
normal it's almost expected but most of13:48
all most of all it's okay so since13:51
burnout is real and expected how can we13:55
cope well and here come the strategies13:58
and tips13:59
some of us become Advocates and allies14:01
jumping into those areas where we can14:03
support our children in the type 114:04
community Through walks rides14:07
fundraisers we try to create meaning and14:09
become part of the change we want to see14:12
kind of like what we do with grief work14:14
after all aren't we all grieving to some14:16
extent the life we thought we'd have or14:18
our kids would14:20
have we also keep doing what we were14:23
doing routine becomes important14:25
especially because diabetes took away so14:28
much so we keep taking our kids to14:30
hockey or LaCrosse or synchronized14:32
skating and slowly yes ever so slowly14:36
diabetes becomes a part of our routine14:39
is that new normal they talked about14:40
early on in diagnosis that made no sense14:42
to you then where I work we often do14:45
exposure therapy to help us confront14:47
that which is causing us anxiety it's14:50
not until we confront our stressors14:52
through habituation doing something over14:54
and over again that we can collect14:56
evidence that disconfirms our initial14:59
beliefs and fears kind of like what15:01
happens with diabetes every day is an15:04
exposure that tells us that we can live15:07
with diabetes that we can cope with15:10
diabetes I remember our very first low15:12
blood sugar our whole house stopped we15:15
all sat and watched our daughter drink15:18
her juice waiting for her blood sugar to15:20
come back up not knowing exactly what15:22
was going to happen in trying to manage15:25
those worst case scenario thoughts that15:27
were swirling in our heads so we waited15:31
exactly 15 minutes retested and sure15:34
enough everything turned out okay blood15:37
sugar was back up then over time you15:40
have another low and another low and15:42
another low and it's not long before15:44
you're taking these lows in stride15:46
that's habituation doing something over15:49
and over again and collecting that15:51
evidence that your worst case scenario15:53
didn't always have to come true and that15:55
you could15:57
cope this helped helps with that anxiety15:59
and worry that comes with16:02
diabetes another way to alleviate some16:04
of the burden and stress caused by16:06
caregiving in a diabetes world is to16:08
build connections find your community16:11
and boy are there ever a bunch of type16:14
one communities to choose from diabetes16:17
Facebook groups DIY groups like Loop and16:20
night Scout organizations like I16:22
challenge diabetes friends for life16:24
connected in motion desate decamps and16:27
even just in formal local Friendly16:30
coffee clubs where type one caregivers16:32
meet once a16:33
month I think the best impact that16:36
finding your type one Community has is16:38
that it leaves you knowing that you're16:39
not alone this goes a long way in16:42
helping navigate burnout being around16:44
people who just get it and big bonus16:47
from your new community is that you can16:49
make some of the best friends you'll16:50
ever have in life I know I16:55
did this next strategy is a tough tough16:59
one as far as navigating burnout goes17:02
letting17:03
go for a disease that came in and17:05
required us to stick to our kids like17:07
glue letting go can be really tough for17:10
some so tough that you may avoid it I17:13
think what worked best for us was to let17:15
go a little bit at a time over the17:18
years one of the ways we can let go a17:20
little bit at a time is sending our kids17:23
to diabetes Canada17:25
decamps it's good for us yes it's okay17:28
for us caregivers to get a break from17:30
diabetes I know that thought took me a17:32
while to get over but it can be super17:35
fun for our kids to get a break from us17:37
too teaching our kids how to manage17:39
their diabetes and sending them to17:41
places like Camp is a life skill that17:43
will pay dividends in the long run for17:45
them and for us too and our kids get to17:48
make some of their best friends at17:50
camp and we have fun wow diabetes and17:53
fun in the same sentence who would have17:55
thought yes yes we have fun with diabet17:58
diabetes they say that laughter is the18:00
best medicine okay well maybe in our18:02
house insulin is the best medicine but18:04
laughter is definitely a close second18:07
see those shoes in the picture they're18:08
real Jelly Bellies they must have been18:11
at least a thousand carbs each shoe and18:14
bonus they gave us easy access to low18:16
treatments on18:18
Halloween get creative with this here18:20
too we started a blood work Buddy system18:22
at our hospital where we booked blood18:24
work appointments with other kids living18:26
with type one who wants to get blood18:28
work alone it also helped kids who were18:31
struggling and scared to build their own18:32
capacity and resilience we even booked18:35
endoc Clinic appointments together with18:37
my daughter's diabesity from Camp what18:39
better way to spend the time waiting for18:41
your Endo team than catching up with18:43
your Camp friend and celebrate the18:45
successes and accomplishments we18:47
celebrate the Milestones like Diaries18:50
and pump start days diabetes came into18:52
our lives and created a lot of losses so18:55
it's important that you take the moments18:57
and celebrate the winds and the18:59
resiliency that you see in your child19:01
and in yourself too I call this PDG post19:05
diagnosis growth and it is incredible to19:08
witness but you have to be open to19:10
looking for19:11
it so I'm a realist and I recognize that19:14
it's not always rainbows and butterflies19:17
sometimes things go wrong and sometimes19:19
that can be scary terrifying even19:23
sickness or pump site failures happen19:25
low blood sugars happen high blood sugar19:28
happen remember this is part of the19:31
disease and it will pass and you will19:35
cope when you're focused on caregiving19:38
it might be hard to remember to take19:39
time for yourself to care for yourself19:42
self-care can be high level I remember19:45
after we dropped my daughter off at19:47
diabetes Camp um my husband and I drove19:50
straight to the airport for a holiday19:53
boy was that tough it was really hard to19:58
trust other people to take care of my20:00
child with20:01
diabetes but what better group of20:04
caregivers can you find for your child20:07
than a medical team that's on 247 at a20:10
diabetes20:13
camp now self-care can also be micr20:15
level doesn't need to be big doing the20:18
little things to help offset the burden20:20
and distress that diabetes can bring20:21
into your life getting your haircut20:24
going to dinners going to sporting20:25
events taking naps spend spending time20:28
doing something anything other than20:31
Diabetes Care20:33
counts now this part is important while20:35
selfcare absolutely includes taking time20:38
for things you enjoy and that provide20:40
restorative rest and relaxation for you20:43
did you know that self-care is also20:45
about knowing your own limits setting20:47
your own boundaries and knowing when you20:49
need to reach out and ask for help be it20:52
informal support through family and20:54
friends or more formalized through20:56
individual counseling services20:59
it's okay to speak up and say I'm not21:01
okay no one to get help for diabetes21:04
management through your clinics and no21:06
one to get help for your own mental21:07
Wellness or your child's JDRF has21:11
created a mental health and diabetes21:13
directory that provides a list of21:15
trained therapists or clinicians21:16
specializing in type 1 and diabetes21:19
distress check them out remember my hope21:22
for you was to leave here being kind to21:24
yourself well there's a theory that says21:26
that we decompensate in our skills when21:29
we're overworked and21:30
overwhelmed well doesn't this make sense21:32
for us as type 1D caregivers we are21:35
tasked with being our best version of21:37
ourselves during some of our most21:39
stressed times let's try not to judge21:43
ourselves when we're at our most21:45
stressed practicing self-compassion can21:48
go a long way in navigating21:50
burnout next we're going to move to some21:52
Concepts that may not be easy to wrap21:54
our heads around but are necessary for21:56
us to move through the Ang anger21:58
avoidance and denial that may come with22:01
diabetes distress and caregiver burnout22:04
we'll start with22:05
gratitude this is a big ask but it's oh22:08
so significant in navigating burnout22:11
find your gratitude in this journey it22:14
can be gratitude for new technologies22:16
that have made diabetes management so22:18
much easier like my Pebble watch back in22:20
the day when we couldn't see remote22:22
blood sugars it can be gratitude for new22:25
friends made through the diabetes22:26
communities or or it can simply be22:29
gratitude for getting through another22:30
day the trick here is that you have to22:33
be willing to look for it we can22:35
sometimes get stuck in everything that22:37
has changed that's become harder or that22:39
we've lost take some time reflect on the22:42
good that you still have another tough22:44
but necessary process acceptance we22:48
accept that diabetes is a part of our22:50
Lives it's a part of our children's22:52
lives this doesn't mean giving in or22:54
giving up this means choosing to live22:56
the best life you can with diabetes you22:59
can see in the picture we made our23:01
daughter a birthday cake one year with23:02
her avatar on it actually we ordered it23:04
in a wonderful talented Baker made it23:07
but we made sure to include her insulin23:09
pump it is after all a part of her and23:12
we love every bit of23:14
her P.S I still don't like the word23:16
acceptance I still secretly cringe when23:19
I hear it but it is liberating to stop23:22
fighting it and to lean into it so that23:25
we can adapt and grow remember that PD23:29
and most of all we adapt our kids adapt23:33
and we figure out how to keep going like23:35
how to test blood sugar while you're23:36
hula hooping that takes23:40
skill adapting takes time don't rush it23:43
don't rush any of the processes go at23:46
your own pace and take care of yourself23:48
just like they tell us on airplanes to23:50
put the oxygen mask on yourself first so23:52
that you can help others you see none of23:55
the strategies to navigate burnout Focus23:57
focus on alleviating the work that comes24:00
with diabetes that work is real and24:03
necessary to keep our kids alive rather24:06
navigating burnout starts with you and24:08
what you can24:10
do and then sit back and watch as they24:15
soar we uh dropped my daughter off at24:18
University a week after she spent the24:19
summer up at diabetes24:24
camp that was a tough24:26
one and while my role wasn't finished it24:29
was time to let go and 10 years ago I24:32
never would have thought I'd be ready24:34
for this moment but I24:37
was and if I can give my tenure younger24:40
self one piece of advice it would be to24:43
let go of the future worries they tend24:45
to work themselves24:46
out today my daughter is living on her24:49
own in her first year of University24:50
we've had ups and downs we've had24:52
bumps but we could not be more prouder24:55
or more grateful and no it wasn't wasn't24:57
easy but that was never part of the deal24:59
with diabetes remember the absence of25:02
ease now our story is not unique there25:05
are a lot of families like ours whose25:07
children have done very well and if25:09
you're watching this you might be one of25:10
those families and if you're not that's25:13
okay too remember those ages and stages25:15
we talked about I wasn't always in a25:18
good place with diabetes there were25:19
highs and there were some really low25:21
lows and I'm not talking about blood25:23
sugar but if I can encourage you to hold25:27
on to hope25:28
what worked for me was reaching out and25:30
connecting things will get better but25:32
you don't have to go this25:34
alone I just spent part of my summer at25:37
diabetes camp and I can vouch that there25:39
are superstars out there kids who grew25:42
up with diabetes who have and continue25:44
to overcome so much who are exceptional25:47
and extraordinary look for the success25:50
stories they'll take away some of your25:52
stress and worries and fears and build25:55
your hope that despite the bumps and all25:57
of our roads we can navigate and come26:00
out of some of the darkest tunnels in26:02
ways we never would have imagined living26:05
our best lives thank26:08
you thank you so much for tuning into26:10
this very enlightening episode of26:12
diabetes deep Dives and thank you to26:15
Pina for sharing her story and bringing26:17
to light the experience of raising a26:19
child with diabetes again this topic may26:21
not be relevant to everyone living with26:23
diabetes but we do hope that you found26:25
it interesting and learned something new26:28
please take the opportunity to keep the26:30
conversation going by posting a comment26:32
in the comment section on YouTube you26:34
can provide us feedback about the video26:36
by clicking on the link to the feedback26:38
survey in the description box if you26:40
have ideas for other topics you'd like26:42
to learn more about you can include that26:44
in the comments or feedback survey as26:46
well Pina talked about other26:48
organizations that support people living26:50
with type 1 diabetes we've included26:52
links to those organizations in the26:54
description box as well as some26:56
additional diabetes can can resources26:58
related to caregiving and diabetes for27:01
more information about diabetes27:03
management please visit our website at27:07
diabetes.com27:10
diabetes.com line at800 Banting that's 127:15
1822627:16
8464 and speak to one of our information27:19
and support Specialists who can address27:21
your needs thanks again for joining us27:23
and see you next27:26
time27:27
[Music]
[Music]0:03
hello and welcome to diabetes deep Dives0:06
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series in this episode we will hear from0:46
Pina Barbieri a mother of a young adult0:49
who lives with type 1 diabetes she's0:51
also a social worker an educator and0:54
diabetes Canada was very fortunate to0:56
have her as a volunteer for our decamps0:58
program not only not only will Pina1:00
share with us her experiences raising1:02
her daughter but she'll also unpack what1:04
it means to be a caregiver and reframe1:06
the concept of caregiver burnout she1:09
will also provide tips and strategies to1:11
thrive in the face of supporting loved1:13
ones with diabetes using both her1:15
personal and professional perspectives1:18
this video is supported by an1:19
unrestricted educational grant from copi1:23
we hope after watching this video that1:24
you will gain a greater understanding of1:26
how families are impacted by a diabetes1:29
diagnosis1:30
and a deeper appreciation of what1:32
contributes to caregivers experiencing1:34
stress and burnout as well as strategies1:36
for dealing with all that being a1:38
diabetes caregiver entails we also want1:41
to let you know that some of the content1:43
in this video may be difficult to hear1:46
and may trigger some intense emotions we1:48
encourage you to seek support and or1:50
stop the video If you find yourself1:52
reacting to the content in a distressing1:54
way we recognize that the content in1:57
this video may not be relevant for1:58
everyone and will depend on what your2:00
experience with diabetes is and what2:02
devices are available to you where you2:04
live if you have specific questions2:06
about diabetes management please reach2:08
out to your Healthcare team these videos2:11
are for educational purposes only the2:14
content discussed in this video is not2:16
intended to be medical advice and to the2:18
extent that medical advice is required2:20
you should consult with a qualified2:22
medical professional the information2:24
discussed in this video cannot replace2:26
consultations with qualified Healthcare2:28
professionals to meet your individual2:30
medical needs the views and opinions2:33
expressed in this video are those of the2:34
speakers and do not necessarily reflect2:36
the views or positions of diabetes2:39
Canada as always we hope that this video2:41
Sparks your interest in learning more2:43
about diabetes management and now over2:45
to our guest speaker Pina welcome to2:49
unpacking caregiving um this is a2:52
recording for caregivers of children2:54
living with type 1 diabetes I think you2:56
can see beside me a list of words3:00
and wow those are a lot of words these3:03
are words that describe a journey that3:05
some of us are on as caregivers to our3:07
children or siblings or grandchildren or3:09
whichever way you come by providing care3:11
for someone who lives with type 13:13
diabetes some of the words are actually3:15
opposites like balancing and juggling3:19
being proactive but also reactive3:21
grieving but also holding hope being sad3:25
and proud smiling and crying keeping3:29
things stable3:30
while everything around you is changing3:33
do any of these words resonate with3:35
you now I'd like you to imagine a world3:38
where your role as a caregiver suddenly3:41
changed almost overnight to include all3:44
these new job descriptions added to your3:46
already full plate new roles like3:48
mathematician working out those isfs do3:51
I increase insulin sensitivity do I3:53
decrease it to make it stronger I still3:56
have to take a minute and walk myself3:57
through that one new roles like a4:00
pharmacist learning about new4:01
medications a doctor making dosing4:03
decisions a nurse administering insulin4:06
injection a therapist helping curb4:09
anxieties and supporting your kids4:10
through some really really sad times an4:14
IT expert building your own webites and4:16
apps a data manager combing over4:18
thousands of blood sugars looking for4:20
patterns an EMT running to crisis calls4:24
I'm not sure I'd sign up for this job it4:26
actually sounds pretty4:28
hard4:30
my child's name is Laura and she's been4:32
living with type 1 diabetes for the past4:34
10 years Her diagnosis was lifechanging4:37
for her and real changing for me my4:40
name's Pina and I'm the caregiver of a4:42
child living with type one I'd like to4:45
spend some time with you today unpacking4:47
the caregiver experience as it relates4:50
to type 1 diabetes in my spare time I'm4:53
also a social worker so I'd like to4:54
share some strategies and tips that can4:56
help us navigate the everchanging4:58
landscape of of caring for someone that5:01
we love who lives with type5:04
one if you're the caregiver of a child a5:07
young adult or even an adult living with5:09
type one you may have experienced a5:10
variety of what I like to call ages and5:12
stages of the diabetes Journey that5:15
first year that was a tough one I'm sure5:18
a lot of us remember diagnosis some of5:21
us may have that day emblazoned in our5:22
memory others may remember it in bits5:25
and pieces and others may even struggle5:27
to bring some of those difficult5:28
memories to the surface5:31
Switching gears from that freedom that5:32
came with the working pancreas to being5:34
aware of every single carbohydrate that5:37
your child put in their mouth and all5:40
those carbohydrates those countless carb5:42
counts changed how we viewed food and5:45
meals those first few days then months5:48
and maybe even years for some of us the5:50
day-to-day stress that lasted year to5:52
year packing the diabetes bag making5:54
sure you have juice or glucagon or5:56
insulin extra pods extra meters5:59
navigating healthare systems and6:00
appointments for some the added stress6:03
of other autoimmune ill illnesses just6:05
compounded the caregiver6:08
role having a child diagnosed at two6:11
versus a child diagnosed as a teen6:12
through different spins into how some of6:14
us had to Pivot with diagnosis and with6:16
life so many variables and factors6:19
affected us too many to list6:22
actually and just like no two person's6:25
diabetes is the same no two caregivers6:27
will have the same experience they is no6:29
way we can cover every single experience6:32
and emotion in these 20 minutes but what6:35
I hope to leave you with here is the6:37
safety to start the discussion of what6:39
it means to be a t1d caregiver to bring6:43
awareness and unpack this journey that6:45
we're on and highlight some strategies6:47
to help us find balance within our own6:49
selves but most of all most of all I6:52
hope you leave here with the reminder to6:54
be kind to yourself as a caregiver in6:56
the world of type6:58
one so remember that word cloud with all7:01
the added jobs and new expectations that7:03
came with the type 1 diagnosis well this7:05
is us in our house 24 hours after our7:07
daughter's diagnosis where we went from7:10
a healthy child to a child with a7:11
lifelong disease we were trying to7:14
balance all that had changed in our7:16
daughter's life and all our new roles7:18
with some normaly so we thought why not7:20
have a Friday night just dance party on7:22
day two of7:25
diabetes putting our child's needs7:27
before our own needs to grieve that was7:29
important to us I remember our Clinic7:32
telling us kid first diabetes second and7:35
that really resonated with me absolutely7:38
this made7:39
sense but at the same time I thought how7:42
in the world was I going to fit diabetes7:45
and everything that came with it into a7:48
childhood and so here begins that7:50
Journey that we as caregivers feel7:52
compelled to go on taking on the7:54
physical mental emotional and social7:56
impacts of type one on top of everything7:59
else we8:01
do a type 1 diagnosis is life-changing8:04
and it brings with it so many stressors8:06
and worries the stress and anticipation8:09
of blood work appointments worries about8:11
school and educating School staff on8:13
your child's diabetes working with8:14
Community organizations to put nursing8:17
staff in place to help our youngest kids8:19
stay safe at school or helping our older8:22
kids navigate this lifechanging event by8:24
putting IEP accommodations in8:26
place as life keeps moving and you start8:29
to figure out what used to be easy like8:32
birthday parties kids sports family8:34
vacations and sleepovers and gosh I8:37
remember heck even just putting your8:38
child to bed became stressful with8:40
worries about nighttime blood8:43
sugars then in her life stages like8:45
puberty driver's licenses first jobs8:48
transitioning from pediatric to adult8:50
diabetes care and moving away to college8:52
or university life can get very bumpy8:56
with diabetes and while you're working8:58
hard to juggle care in for your child9:00
you often do this at your own expense oh9:02
and did I mention9:04
sleep you're doing all of this on less9:06
sleep than the average person needs9:08
because diabetes doesn't go away at9:09
night and lack of sleep correlates with9:12
decreased focusing decreased9:15
productivity increased depression9:17
symptoms increased irritability and9:19
increased physical health problems not9:22
what we type 1 caregivers9:24
need and then just when you think you've9:26
got the hang of things boom something9:28
else happens a really bad low blood9:30
sugar ketones from high blood sugar or9:33
even just a reminder that sometimes9:34
diabetes takes precedence over being a9:36
kid and that sends you back into the9:39
reality and grief of this disease9:41
there's actually a term called chronic9:43
sorrow that's described as an9:45
intermittent grief reaction that can9:47
happen with certain triggers even years9:49
after a type 1D diagnosis for both kids9:52
and9:54
caregivers and our kids are heroes9:57
everyday Heroes absolutely absolutely no10:00
debate but we caregivers are pretty10:02
awesome too kind of are every superhero10:05
we're Batman jumping in action when we10:07
see that dexc combat signal pop up in10:09
the middle of the night we're Wonder10:11
Woman deflecting those low blood sugars10:13
with juuice boxes in hand and we're the10:15
Hulk rage bising those stubborn highs10:18
and we're Superman whose Kryptonite is10:21
the unpredictability that comes with10:23
diabetes and renders us feeling10:25
powerless at times we are Spider-Man10:28
prepared to scale a building if we have10:31
to get to our child having a blood sugar10:32
emergency I know I've driven a little10:34
too fast trying to get to my daughter at10:37
school we're Iron Man equipped with10:39
every Tech Gadget known to man and even10:41
some DIY and we are even full-time blood10:45
sugar ninjas only because type 1D mom is10:49
not an official job10:52
title yes we're all these superheroes10:54
but we're also human and frankly being10:57
even just one superhero can leave us10:59
feeling11:01
exhausted actually we're not just11:03
exhausted caregiving can leave us with a11:05
lot of other feelings as well a lot of11:07
us have seen the iceberg analogy in11:09
relation to anger or even diabetes but11:12
has anyone ever thought what it would11:13
look like for us the type 1D caregivers11:16
I took a shot at creating one since I11:17
couldn't find one based on my own11:20
experiences notice what's above the11:22
surface what everyone sees or what we11:24
want everyone to see us as calm11:27
confident coping and control11:30
and then what's below the surface maybe11:32
what we don't want anyone to see what we11:33
try to hide the tough stuff like fear11:36
and guilt and anger sadness anxiety and11:40
loss of11:42
control the reality is that managing11:45
your child's chronic illness and11:47
potentially caring for other children11:48
and managing your own physical and11:50
mental health managing your family and11:52
your relationships in your career is a11:54
recipe for what is often described as11:56
caregiver burnout burnout is defined in11:59
the Webster's Dictionary as exhaustion a12:02
physical or emotional strength or12:04
motivation usually as a result of12:06
prolonged stress or12:09
frustration boy that doesn't sound great12:11
does it there are so many associations12:14
with that term burnout for a lot of us I12:16
know there are for me especially when12:18
we're talking about caring for our kids12:20
are we even allowed to feel exhausted or12:23
does that mean we failed or we're not12:25
good enough some of us may even end up12:27
feeling more guilt and May even shame so12:29
much so that we end up not reaching out12:31
and asking for12:32
help I wish we could find another name12:35
for this burnout term I've thought of12:36
this long and hard some of these words12:39
fit12:40
fatigue uh overload depletion drain12:44
exhaustion but there really isn't one12:46
word that captures it adequately12:48
diabetes is after all a disease and that12:51
term dis ease literally means the12:54
absence of ease it's not meant to be12:57
easy we're going to have ups and downs12:59
kind of like blood sugar and some days13:01
boy some days I know I felt like a rock13:03
star hitting those blood sugar targets13:05
getting boluses on point and then boom13:08
diabetes threw one of its everpresent13:10
curveballs and left me feeling defeated13:12
deflated and13:14
incompetent remember that burnout13:16
definition from earlier the one about13:17
being exhausted because of prolonged13:19
stress and frustration well this makes13:21
sense doesn't it prolonged stress and13:23
frustration can go hand inand with13:26
diabetes that's another word we should13:28
consider prolonged or chronic add that13:31
to disease and you have chronic lack of13:34
ease it never13:37
relents so what can we do how do we13:39
navigate it and notice I didn't say13:41
prevent it because burnout is real it's13:45
normal it's almost expected but most of13:48
all most of all it's okay so since13:51
burnout is real and expected how can we13:55
cope well and here come the strategies13:58
and tips13:59
some of us become Advocates and allies14:01
jumping into those areas where we can14:03
support our children in the type 114:04
community Through walks rides14:07
fundraisers we try to create meaning and14:09
become part of the change we want to see14:12
kind of like what we do with grief work14:14
after all aren't we all grieving to some14:16
extent the life we thought we'd have or14:18
our kids would14:20
have we also keep doing what we were14:23
doing routine becomes important14:25
especially because diabetes took away so14:28
much so we keep taking our kids to14:30
hockey or LaCrosse or synchronized14:32
skating and slowly yes ever so slowly14:36
diabetes becomes a part of our routine14:39
is that new normal they talked about14:40
early on in diagnosis that made no sense14:42
to you then where I work we often do14:45
exposure therapy to help us confront14:47
that which is causing us anxiety it's14:50
not until we confront our stressors14:52
through habituation doing something over14:54
and over again that we can collect14:56
evidence that disconfirms our initial14:59
beliefs and fears kind of like what15:01
happens with diabetes every day is an15:04
exposure that tells us that we can live15:07
with diabetes that we can cope with15:10
diabetes I remember our very first low15:12
blood sugar our whole house stopped we15:15
all sat and watched our daughter drink15:18
her juice waiting for her blood sugar to15:20
come back up not knowing exactly what15:22
was going to happen in trying to manage15:25
those worst case scenario thoughts that15:27
were swirling in our heads so we waited15:31
exactly 15 minutes retested and sure15:34
enough everything turned out okay blood15:37
sugar was back up then over time you15:40
have another low and another low and15:42
another low and it's not long before15:44
you're taking these lows in stride15:46
that's habituation doing something over15:49
and over again and collecting that15:51
evidence that your worst case scenario15:53
didn't always have to come true and that15:55
you could15:57
cope this helped helps with that anxiety15:59
and worry that comes with16:02
diabetes another way to alleviate some16:04
of the burden and stress caused by16:06
caregiving in a diabetes world is to16:08
build connections find your community16:11
and boy are there ever a bunch of type16:14
one communities to choose from diabetes16:17
Facebook groups DIY groups like Loop and16:20
night Scout organizations like I16:22
challenge diabetes friends for life16:24
connected in motion desate decamps and16:27
even just in formal local Friendly16:30
coffee clubs where type one caregivers16:32
meet once a16:33
month I think the best impact that16:36
finding your type one Community has is16:38
that it leaves you knowing that you're16:39
not alone this goes a long way in16:42
helping navigate burnout being around16:44
people who just get it and big bonus16:47
from your new community is that you can16:49
make some of the best friends you'll16:50
ever have in life I know I16:55
did this next strategy is a tough tough16:59
one as far as navigating burnout goes17:02
letting17:03
go for a disease that came in and17:05
required us to stick to our kids like17:07
glue letting go can be really tough for17:10
some so tough that you may avoid it I17:13
think what worked best for us was to let17:15
go a little bit at a time over the17:18
years one of the ways we can let go a17:20
little bit at a time is sending our kids17:23
to diabetes Canada17:25
decamps it's good for us yes it's okay17:28
for us caregivers to get a break from17:30
diabetes I know that thought took me a17:32
while to get over but it can be super17:35
fun for our kids to get a break from us17:37
too teaching our kids how to manage17:39
their diabetes and sending them to17:41
places like Camp is a life skill that17:43
will pay dividends in the long run for17:45
them and for us too and our kids get to17:48
make some of their best friends at17:50
camp and we have fun wow diabetes and17:53
fun in the same sentence who would have17:55
thought yes yes we have fun with diabet17:58
diabetes they say that laughter is the18:00
best medicine okay well maybe in our18:02
house insulin is the best medicine but18:04
laughter is definitely a close second18:07
see those shoes in the picture they're18:08
real Jelly Bellies they must have been18:11
at least a thousand carbs each shoe and18:14
bonus they gave us easy access to low18:16
treatments on18:18
Halloween get creative with this here18:20
too we started a blood work Buddy system18:22
at our hospital where we booked blood18:24
work appointments with other kids living18:26
with type one who wants to get blood18:28
work alone it also helped kids who were18:31
struggling and scared to build their own18:32
capacity and resilience we even booked18:35
endoc Clinic appointments together with18:37
my daughter's diabesity from Camp what18:39
better way to spend the time waiting for18:41
your Endo team than catching up with18:43
your Camp friend and celebrate the18:45
successes and accomplishments we18:47
celebrate the Milestones like Diaries18:50
and pump start days diabetes came into18:52
our lives and created a lot of losses so18:55
it's important that you take the moments18:57
and celebrate the winds and the18:59
resiliency that you see in your child19:01
and in yourself too I call this PDG post19:05
diagnosis growth and it is incredible to19:08
witness but you have to be open to19:10
looking for19:11
it so I'm a realist and I recognize that19:14
it's not always rainbows and butterflies19:17
sometimes things go wrong and sometimes19:19
that can be scary terrifying even19:23
sickness or pump site failures happen19:25
low blood sugars happen high blood sugar19:28
happen remember this is part of the19:31
disease and it will pass and you will19:35
cope when you're focused on caregiving19:38
it might be hard to remember to take19:39
time for yourself to care for yourself19:42
self-care can be high level I remember19:45
after we dropped my daughter off at19:47
diabetes Camp um my husband and I drove19:50
straight to the airport for a holiday19:53
boy was that tough it was really hard to19:58
trust other people to take care of my20:00
child with20:01
diabetes but what better group of20:04
caregivers can you find for your child20:07
than a medical team that's on 247 at a20:10
diabetes20:13
camp now self-care can also be micr20:15
level doesn't need to be big doing the20:18
little things to help offset the burden20:20
and distress that diabetes can bring20:21
into your life getting your haircut20:24
going to dinners going to sporting20:25
events taking naps spend spending time20:28
doing something anything other than20:31
Diabetes Care20:33
counts now this part is important while20:35
selfcare absolutely includes taking time20:38
for things you enjoy and that provide20:40
restorative rest and relaxation for you20:43
did you know that self-care is also20:45
about knowing your own limits setting20:47
your own boundaries and knowing when you20:49
need to reach out and ask for help be it20:52
informal support through family and20:54
friends or more formalized through20:56
individual counseling services20:59
it's okay to speak up and say I'm not21:01
okay no one to get help for diabetes21:04
management through your clinics and no21:06
one to get help for your own mental21:07
Wellness or your child's JDRF has21:11
created a mental health and diabetes21:13
directory that provides a list of21:15
trained therapists or clinicians21:16
specializing in type 1 and diabetes21:19
distress check them out remember my hope21:22
for you was to leave here being kind to21:24
yourself well there's a theory that says21:26
that we decompensate in our skills when21:29
we're overworked and21:30
overwhelmed well doesn't this make sense21:32
for us as type 1D caregivers we are21:35
tasked with being our best version of21:37
ourselves during some of our most21:39
stressed times let's try not to judge21:43
ourselves when we're at our most21:45
stressed practicing self-compassion can21:48
go a long way in navigating21:50
burnout next we're going to move to some21:52
Concepts that may not be easy to wrap21:54
our heads around but are necessary for21:56
us to move through the Ang anger21:58
avoidance and denial that may come with22:01
diabetes distress and caregiver burnout22:04
we'll start with22:05
gratitude this is a big ask but it's oh22:08
so significant in navigating burnout22:11
find your gratitude in this journey it22:14
can be gratitude for new technologies22:16
that have made diabetes management so22:18
much easier like my Pebble watch back in22:20
the day when we couldn't see remote22:22
blood sugars it can be gratitude for new22:25
friends made through the diabetes22:26
communities or or it can simply be22:29
gratitude for getting through another22:30
day the trick here is that you have to22:33
be willing to look for it we can22:35
sometimes get stuck in everything that22:37
has changed that's become harder or that22:39
we've lost take some time reflect on the22:42
good that you still have another tough22:44
but necessary process acceptance we22:48
accept that diabetes is a part of our22:50
Lives it's a part of our children's22:52
lives this doesn't mean giving in or22:54
giving up this means choosing to live22:56
the best life you can with diabetes you22:59
can see in the picture we made our23:01
daughter a birthday cake one year with23:02
her avatar on it actually we ordered it23:04
in a wonderful talented Baker made it23:07
but we made sure to include her insulin23:09
pump it is after all a part of her and23:12
we love every bit of23:14
her P.S I still don't like the word23:16
acceptance I still secretly cringe when23:19
I hear it but it is liberating to stop23:22
fighting it and to lean into it so that23:25
we can adapt and grow remember that PD23:29
and most of all we adapt our kids adapt23:33
and we figure out how to keep going like23:35
how to test blood sugar while you're23:36
hula hooping that takes23:40
skill adapting takes time don't rush it23:43
don't rush any of the processes go at23:46
your own pace and take care of yourself23:48
just like they tell us on airplanes to23:50
put the oxygen mask on yourself first so23:52
that you can help others you see none of23:55
the strategies to navigate burnout Focus23:57
focus on alleviating the work that comes24:00
with diabetes that work is real and24:03
necessary to keep our kids alive rather24:06
navigating burnout starts with you and24:08
what you can24:10
do and then sit back and watch as they24:15
soar we uh dropped my daughter off at24:18
University a week after she spent the24:19
summer up at diabetes24:24
camp that was a tough24:26
one and while my role wasn't finished it24:29
was time to let go and 10 years ago I24:32
never would have thought I'd be ready24:34
for this moment but I24:37
was and if I can give my tenure younger24:40
self one piece of advice it would be to24:43
let go of the future worries they tend24:45
to work themselves24:46
out today my daughter is living on her24:49
own in her first year of University24:50
we've had ups and downs we've had24:52
bumps but we could not be more prouder24:55
or more grateful and no it wasn't wasn't24:57
easy but that was never part of the deal24:59
with diabetes remember the absence of25:02
ease now our story is not unique there25:05
are a lot of families like ours whose25:07
children have done very well and if25:09
you're watching this you might be one of25:10
those families and if you're not that's25:13
okay too remember those ages and stages25:15
we talked about I wasn't always in a25:18
good place with diabetes there were25:19
highs and there were some really low25:21
lows and I'm not talking about blood25:23
sugar but if I can encourage you to hold25:27
on to hope25:28
what worked for me was reaching out and25:30
connecting things will get better but25:32
you don't have to go this25:34
alone I just spent part of my summer at25:37
diabetes camp and I can vouch that there25:39
are superstars out there kids who grew25:42
up with diabetes who have and continue25:44
to overcome so much who are exceptional25:47
and extraordinary look for the success25:50
stories they'll take away some of your25:52
stress and worries and fears and build25:55
your hope that despite the bumps and all25:57
of our roads we can navigate and come26:00
out of some of the darkest tunnels in26:02
ways we never would have imagined living26:05
our best lives thank26:08
you thank you so much for tuning into26:10
this very enlightening episode of26:12
diabetes deep Dives and thank you to26:15
Pina for sharing her story and bringing26:17
to light the experience of raising a26:19
child with diabetes again this topic may26:21
not be relevant to everyone living with26:23
diabetes but we do hope that you found26:25
it interesting and learned something new26:28
please take the opportunity to keep the26:30
conversation going by posting a comment26:32
in the comment section on YouTube you26:34
can provide us feedback about the video26:36
by clicking on the link to the feedback26:38
survey in the description box if you26:40
have ideas for other topics you'd like26:42
to learn more about you can include that26:44
in the comments or feedback survey as26:46
well Pina talked about other26:48
organizations that support people living26:50
with type 1 diabetes we've included26:52
links to those organizations in the26:54
description box as well as some26:56
additional diabetes can can resources26:58
related to caregiving and diabetes for27:01
more information about diabetes27:03
management please visit our website at27:07
diabetes.com27:10
diabetes.com line at800 Banting that's 127:15
1822627:16
8464 and speak to one of our information27:19
and support Specialists who can address27:21
your needs thanks again for joining us27:23
and see you next27:26
time27:27
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Category Tags: Blood Sugar & Insulin, Children & Adults, Special Populations;