Diabetes Deep Dives: Unpacking Caregiving

0:00 [Music]0:03 hello and welcome to diabetes deep Dives0:06 my name is Candace and I am from0:07 diabetes Canada if you are new to our0:10 video series thank you for joining us if0:12 you have been enjoying the series0:13 welcome back our diabetes deep Dives0:17 video series is designed to go beyond0:18 the surface of General diabetes0:20 information we hope to spark continued0:22 interest and learning and leave you with0:24 practical tips and tools that you can0:26 easily use we drop a new video every0:29 month so subscribe subcribe to our0:30 YouTube channel and click on the0:31 notification Bell to be notified about0:33 new content you can also check us out on0:36 social media to find out when the next0:38 one will be posted on our YouTube0:39 channel thanks to those who have0:41 subscribed and supported our video0:44 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]