I wanted to get some advice from you parents of children with diabetes. Having been diagnosed just a few years ago, my parents didn’t have a young child with diabetes, which is great, but also means this is as new to them as it is to me. They’ve had concerns about me from the beginning, of course, but now that I’ve started basal insulin - which to me was a big deal, as it made everything a little more real in that my pancreas really isn’t keeping up anymore - they’ve made several comments when giving advice to me on doing this or that that have made me realize they are worrying. They haven’t straight out said as much to me, but for example, when talking to my mom about a busy day and some things I still had to deal with, she basically said whatever I did, I should do what keeps my blood sugar stable (and she said that was my dad’s advice, too). It’s not the first of these type of comments. I don’t mind their concern; I’m thankful to have very involved and caring parents. But…
My question is: as a parent, I understand worrying about your child; I do that pretty regularly. is there any way I can make this less scary to them, any way I can reassure them that I’m doing ok (and by diabetic standards, I’m doing GREAT)? I know part of the problem is they know I’m not watching my BG during the night - I don’t usually wake during the night, so I’m not checking, and I don’t have alarms due to using the Libre. I’m guessing this makes them pretty anxious about the “dead in bed” thing, but I just told my mom this week that I (not intentionally) did a basal test while at the ER with my son, and my basal rate is perfect. And this is at the lowest point of any hormonal influence, so my BG is only going to flatline higher than this from here. My parents have a lot going on right now, and I just want to be able to take this off their minds as much as I possibly can.
Now excuse me while I go head off an impending low and fix dinner.
I don’t know that I’ll ever NOT worry about Liam…even when he’s a grown man. It’s just what a parent does for their their child. Even if not intentionally, it’s just the nature of being a parent.
But when I see Liam producing good numbers on his own and making smart health choices as well as implementing steps he thinks are helpful in making sure he’s healthy (even when he’s sleeping), I think I’ll worry LESS…but I don’t know if I’ll ever just NOT be worried at all. I will probably worry about his life and wellness for the rest of my life (as I worry about over the health of all my kids).
The sleeping part worries me the most…what if he dies in his sleep one day because his BG’s drop so low he can’t correct himself? What if he has no one to help him? What if I’m not able to help him…this is never going to leave my mind.
I’m not a parent, so my thoughts are just based on someone who has parents who do worry even though I am approaching middle adulthood!
I’m not sure there is a way to make parents stop worrying. I think as you gain more experience managing your blood sugar, they will see that you have a handle on it. But overnight lows are always a fear. For me, I have a system in place so that my parents can discreetly check in with me each morning, if they want to (they don’t always do this).
I used to get quite annoyed with how much my parents worried about me. But ever since having an experience where I was worried about someone only to check in and find the worst-case scenario, I’ve stopped letting it bother me. I would rather someone check in with me a million times and not need it than not doing so and needing it once…
If you feel that the worry is an unnecessary burden for your parents right now, if it were me I’d have an open discussion about it. Tell them that you are managing very well, that your doctors are happy with your progress, and that you have this or that safety precaution in place, and that you understand that they will always worry but wanted to reassure them that there is no immediate health crises. In terms of overnight lows, do you have a CGM? Before I had a CGM, I would get up to test if I had reason to feel I might be low, and of course I had my parents check-in system each morning. Maybe putting some safety precautions in place for overnight would help to reassure them, if this is something they worry about in particular?
I think my parents worry to the same degree as worry of me getting in a car accident. Just as I do my best for things under my control (regarding my diabetes and my driving), there is always the chance of unexpected in either case.
I get that. I want them to worry less; I know they’ll be worried regardless.
No, just the Freestyle Libre, which doesn’t have alarms.
I’m not sure. They’ve now mentioned my blood sugar stability twice in just a few days that made me pause. Earlier this week, I chose to go home and get much-needed sleep (alone) while my husband stayed with my son overnight at the hospital. My mom said the thing I needed to consider was whether or not I was safe to sleep alone (BG wise)…
I see that they’re worrying more than that - they’re mentioning my BG stability more than advising me to drive carefully or whatnot other regular life dangers, which is new.
In my case, they don’t know details of my daily BGs, and don’t ask. But I worry plenty about them, but glad they finally agreed to get in home care a few days a week.
I think it’s great that you want to take this off their plate, @Pianoplayer7008. Other than educating them since they’re tuned in and straight up addressing it (“Thanks for worrying, Mom, but I have FUD!! And I’m super smart and motivated and tuned in!!), you may not get a vote on their worry.
Have then sign up for an FUD account. That will help them stay connected and see that you are getting the most sound advise and have the best network of friends ever.
My mom calls and texts me 56 times a day, and she lives two doors down. That means she texts and calls 56 times a day when she’s not actually here in my house— which is many hours of the day. And I’m not so sure her level of worry is directly associated with how well I’m currently doing. I think my diabetes taps into her anxiety, and sometimes I just need to accommodate and promise her a few extra times that I’m going to be safe.
I hate that she worries, but it’s not for nothing. Sometimes it actually helps keep me from falling into whatever mess I was headed for full speed ahead, and sometimes just knowing she’s gonna call me 16 times to see if I’m okay is enough to make me get up and take care of it really quickly and really well.
Ha! I do talk about you guys and this forum all the time.
I think I need to add to my question - I know parents are going to worry. I’m a parent, so I get that, even though thankfully I don’t have the stress of a child with a chronic illness. I think what I’m trying to ask is this: are there any measures, any diabetes care management measures, or safety measures like @Jen mentioned, that would make you, as a parent of a CWD, breathe a little easier, knowing your (adult) child is doing xyz or has abc measures in place? Like @T1Allison said, educating - what specific knowledge might help? My mom is a researcher by nature, so I’m sure she’s looked up way too much about T1 already (and talked about it with my dad)…
Being ok with me tracking his bgs as an adult would make me worry less. :). Like letting me have the data via the follow so that I can reach him or someone who can help in an emergency.
I think it has to be a tricky balance with diabetic kids… they don’t stay kids forever and in between childhood and adulthood there are often some weird detours. a lot of kids go through huge rebellious stages as teenagers, I sure did… I’m so glad I didn’t have diabetes then… I would think that a significant concern is that diabetes itself doesn’t become a part of the rebellion…
I have no way to share my Libre data, as far as I know. I’m not sure how much that would help or hurt, though, since it fairly often reads lower than my actual BG. So maybe it’s a good thing they can’t follow me.
No rebellious teenage drama here, though. Seriously, though, I cannot even imagine having to deal with my child’s diabetes care on top of “normal” teenager issues…whew.
I was diagnosed in relative adulthood (21). I don’t share my CGM with anyone bc it just hasn’t logistically proved more helpful than harmful. My husband would know how to interpret the numbers, but it would wake him up all the dang time when sleeping odd hours for work. My parents wouldn’t know how to interpret the data and would freak out all the time.
However, if I’d been diagnosed as a child and my parents had had to care for my diabetes before I did, I’m sure that would be a radically different story. They’d be the ones educating me initially…whereas I obviously educate them since I’m the one living it.
It wasn’t until my mom was diagnosed as Type 2 and she had to start testing/walking/losing weight that she started to really understand the logistical and mental demands of the disease. I was ten years into my diagnosis and she’d been super curious/supportive/etc that whole time…but it didn’t “click” until she lived some of it. I think it’s just that sort of thing for people…you can only understand so much from a distance if you’re not living together or whatever with this disease.
I offered to let my mom follow my BGs as an alternate to messaging me once a day, and she said no. She said seeing my BG would stress her out more from a distance, and worry her more since she wouldn’t be managing them. I’d also feel a bit weird having someone else see every high and low and every mistake I made, and I think that would stress me out more! Though that could be different for people who grew up with CGM sharing. And definitely if I had a significant other, I would let them share.
My parents know that I can and do handle routine highs and lows; what they worry about is a medical emergency that I can’t handle on my own. I do make sure to mention what my A1c is and what my doctor says about my control (or other health issues), because I think hearing that my doctor feels that I’m doing well is reassuring. Also, I think with any new diagnosis, it ramps up the worry for a while. When I was first diagnosed with Graves’ (which was diagnosed through emergency and brief admission to hospital), I was getting texts every day asking how I was doing and how I was feeling and how this or that appointment went, when usually my health doesn’t come up in messages that often. So hopefully your parents will become less worried or at least more subtle about checking in as you get used to diabetes.
I should have added to my suggestion that…in addition to being able to remotely monitor…knowing that he will be responsive (or have someone close to him that I can contact incase of emergencies (say, “LOW” for 20 or 30 minutes and I can’t reach him)…THEN I would worry less. Seeing the numbers but having no way of contacting him if they get into the dangerous territory would worry me MORE, naturally.
I’m going to have a large learning curve when he grows up…he’s going to drive what will and what won’t be acceptable and what is considered invasive. I’ll naturally respect his wishes, but he will understand that my desire to keep track of his BGs is coming from only the purest most loving place a parent can come from. I just want to protect him in adulthood whenever I can…if he will allow me.
I can understand this. My family has a lot of “invisible” chronic illnesses. My mom did have pre-diabetes (steroid induced after a major surgery), so I think she understands just enough between her own experience and research to be more worried.
Good point…I’ll have to remember to work those things into conversations occasionally.
Ha, I think that’s part of what worries my mom. My husband works 12hr shifts (or really, 13hrs), and is gone before the rest of us are awake for the day. I’m sure she worries just like I do about what happens if I don’t wake up, or what happens if I have a major low during the day when it’s just me and my toddlers…things I’ve been thinking about and trying to come up with “plans” for now that I’m on basal…
is there any way I can make this less scary to them, any way I can reassure them that I’m doing ok (and by diabetic standards, I’m doing GREAT)? I know part of the problem is they know I’m not watching my BG during the night - I don’t usually wake during the night, so I’m not checking, and I don’t have alarms due to using the Libre. I’m guessing this makes them pretty anxious about the “dead in bed” thing, but I just told my mom this week that I (not intentionally) did a basal test while at the ER with my son, and my basal rate is perfect. And this is at the lowest point of any hormonal influence, so my BG is only going to flatline higher than this from here. 
My parents have a lot going on right now, and I just want to be able to take this off their minds as much as I possibly can.
I want them to worry less; I know they’ll be worried regardless.
I think I need to add to my question - I know parents are going to worry. I’m a parent, so I get that, even though thankfully I don’t have the stress of a child with a chronic illness. I think what I’m trying to ask is this: are there any measures, any diabetes care management measures, or safety measures like 
I’m not sure how much that would help or hurt, though, since it fairly often reads lower than my actual BG. So maybe it’s a good thing they can’t follow me. 
Seeing the numbers but having no way of contacting him if they get into the dangerous territory would worry me MORE, naturally.