Will the Fear Ever Leave Us??..Seeking Help from Experience (Adults w/T1 and others)

It’s scary once they are gone for good……outside.

I have this friend of mine,  A very cerebral type of person.  About as realistic and level-headed person you will ever meet.  A parent of a child with diabetes.  We had this discussion yesterday and i have not been able to leave the topic since we discussed it.  It revolves around one question.

At what point (or is there ever a point) that we, as parents of kids with diabetes, ever stop worrying about the diabetes aspects of their lives including the ultimate fear of running low in the middle of the night?  Now PWDs, especially adults, I’m going to ask you to chime in here in a minute with your expert advice.

Now I’m well aware that we as parents will always worry about our kids.  Hey, they are our kids, right?  But when they move out, I know the fear of a car accident or a rowdy night with friends subsides, doesn’t it?  Even in the back of our minds we push down our fears.

I just do not believe that the night-time hypo fears I have will ever go away.  Now I’m not saying we should live our lives in total fear but I have the feeling that my gut will always wonder; are they okay?   More so than with kids who do not deal with something like diabetes. 

I realize that those of you who are adults with diabetes have to deal with this issue on a very personal basis, and I’m not asking you to give a statement that will ‘poof’ make this feeling go away for parents but your perspective is invaluable here and so I ask those adults who live with diabetes, who had parents that were active in their care when being younger; (I’m sure you do not send you BG numbers to your parents every morning) did you tell them to just deal with it?  What happened when you moved out?

Is it just a matter of time and your parents asked less and less of ‘how you are doing’?

I also ask those who have had kids move out (beyond college, I mean moved out for good) did you come to grips with this fear; does it diminish?  Why/how does it diminish?

This is a real fear in realization and I hope to hear as I know many parents would also like to know.  Please respond via the comments to this blog and not merely on the face book page.   Thank you all. 

This parent thing is never easy…………one day I’ll get it right.

I am a diabetesdad.


25 replies on “Will the Fear Ever Leave Us??..Seeking Help from Experience (Adults w/T1 and others)”

Honestly, I don’t worry about night time numbers often. There may be a few week stretch where I am off a bit overnight (whether it be high or low) because of increased exercise, stress, different diet, etc. But once those few weeks are over and I have everything adjusted, I go to sleep without a worry.

I’ve had type 1 for over 15 years and I honestly almost never talk to my parents about it. I was very self sufficient from the beginning (not that they didn’t help or persist that they help) but I’ve always been good at controlling my numbers.

Hope that helps.

Thanks for asking this question, Tom! After two nights of continous BG’s in the 50’s, reducing basals, and setting alarms, I am pretty sure I will always worry about my CWD. It is very scary to think of her moving out and I won’t be there to check her at night!

Two responses: one mine and one that I think Lauren would say (and I”m going to ask her to respond here too)

I don’t have fear on the forefront of my thoughts. I almost never have. I guess that yeah, I understand the possibilities, but it was so important to me (once I realized that my fear was freaking then little Lauren out) to NOT let that happen and to NOT let fear rule. So I worked on that. I can honestly say that I almost never went to sleep at night thinking “she might not wake up tomorrow.” I also did not think “She might crash and break her neck” when we skied tough, tough mountains. Or “She’s going to get hit by a drunk driver and die” when she began driving. Or ‘A shark is going to get her” when we snorkeled in tropical waters. I mean, things can happen in life, but we cannot let that cripple us or even hobble us a bit if you ask me.

I think that take is part of why she went off to college unafraid … and I was only a little afraid (LOL!).

So the thing happened on Thanksgiving. I vowed to NOT be afraid, having experienced that, and Lauren’s endo told her not to be. The next morning I was laying in bed. My husband was up. And yes, for a moment … fear. My husband came into the room and said to me “She’s breathing. I checked.” LOL so I was not alone.

The first few nights back at school Lauren called me in the middle of the night ….afraid. But this week, she has not called.

We have to not let fear mess with us. Not an easy goal …. but almost doable. I’m not saying I NEVER worry. For goodness sake, my child has a complicated disease. But I am not afraid in a way that I notice. I don’t think she is either.

She would say (I think): Thanksgiving scared me for maybe the first time. But I am determined to get back to a place where I know I can do this and be safe.

My husband was diagnosed with T1D at age 26, when I was pregnant with our second child. The first few weeks were awful, but I learned early on that my husband needed a supporter, someone who would provide meals with carb counts and would listen to his mutterings and commiserate. He did NOT need someone who would nag him or follow his BS readings too closely.

Fast forward 18 years to when our fourth child was diagnosed at age 12. A typical fourth child, she is very independent. And after a lifetime of watching her dad do a great job living with diabetes, she is following in his footsteps and doing a great job too.

She will be leaving for college in a short 1.5 years. Do I worry more about her than about my husband? YES! I feel responsible for her in a way that I just don’t about my husband. When dd is away, the first questions are always about BS. Whe my dh is away o a business trip, I don’t ask about his blood sugars! I have only woken him up to test twice in 22 years, but I wake her up to test at least once a fortnight and occasionally multiple times per night! But I need to focus on her successes and her independence. I need to give her space and let her go. She has done an awesome job so far, and I just pray it continues!

I will not let fear limit her dreams. And I will not let fear choke my confidence in my daughter.

Although I think about it all the time, I don’t ask about the numbers unless he brings it up. Constantly asking him about his numbers won’t change anything, but it will make him more reticent to talk to me . The fear is always here, but I’ve learned to manage it, not the other way around.

I’m so glad you brought this up. This is on my mind constantly and I’m always reading between the lines when Shelby texts or calls me. I want to ask but don’t want to ask…how’s your numbers at night. I, too, go into her room when she comes home for breaks to see if she’s still breathing. I feel I’m scaring myself for no reason, just to read of an incident where I’m left thinking, “what if that was us?”. I do, however, try to keep in mind, things happen for a reason, and also that “life happens, so live it to the fullest”. I DO want to see how others handle it.

I am not a parent WITH diabetes, just a mother of four children, the last one of whom has T1D… and although she is only ten, I am already fearful of the day she goes into a situation of living alone. to the degree that I almost hope she will find a live in boyfriend as soon as she leaves home – and of course, the attentive, caring type, who will be at her side at all times, both figuratively and physically…! My little girl is VERY autonomous, and almost disregards the fact that she has an illness that can be dangerous.. that is what makes me most worried – the balance between not making the diabetes dominate, but making sure it is present enough to get the attention and the fine tuning necessary.. I try hard enough as it is to treat her as a little girl and not a “set of walking numbers”, as it was once expressed to me… but I fear the fear never goes… perhaps just our ability to confront the fear?

I am a diabetes mom, my son was diagnosed at 10 – he is now 22. About 6 months prior to diagnosis, I noticed that my son was strangely aloof; I even asked my mom about it, it felt like I couldn’t connect with him – almost as if I didn’t know him anymore and I dismissed it as pre-teen behavior (even though I never noticed this with his older sister). About 4 months prior to diagnosis he started having foot pain, body aches – doctors (several) couldn’t find anything wrong. Growing pains. About 5 1/2 months prior to diagnosis my boy had the flu. Not so much. 2 weeks later, several trips to the clinic, labs, and 13 lbs. lighter (having been back to the clinic and more labs that very day) my son was taken by life-flight to a childrens’ hospital. BG over 950 and still conscious, I can still hear the doctor say “if he makes it through the night he’ll be fine”. 2 days after diagnosis with insulin on board he was so excited that he could think clearly. Could he really have felt the effects of the type 1 several months before? About 1 year post diagnosis my son tried the sub q BG monitor in addition to his insulin pump. Day 3 he removed the monitor, simply said ” I’m a kid – not a machine”. Wow. Later that year he opted to go back to injections. Never again considered the pump. I have always wondered if the lovely teacher who threatened to take it from him in the middle of class when he responded to an alarm influenced that decision. This is where I learned to trust my son, who knows far more than I could ever hope to understand about type 1 in spite of hours of research, health department and school meetings, IEP meetings, diabetes training programs and anything I could get my hands on related to type 1 . He has been in the hospital twice for high BG. The first time at 15 they were unable to regulate his BG, I walked in and they handed him a chocolate candy bar to get his “sugar up”. I requested that they unhook the IV, bring him some juice – follow up with a peanut butter sandwich with milk, let him take over the insulin and he will be back in range within a couple of hours. It worked. He was able to do what the doctors, nurses and his mom could not. The second time was early fall of this year, he ran out of insulin and his script was not at a 24 hr. pharmacy. ER is the only option and you BG is through the roof by the time you spend several hours down there. I trust my son, I will always have concerns as with all of my children. My point is that 12 years ago I dismissed my nagging feelings that something was not quite right. My son’s behavior shouted it at me several months before the DKA but I ignored it and listened to the docs. Watch your kids, don’t let them stay immersed in video games and i phones with out keeping in touch with them, ask them questions and engage them in conversation,listen to them, and then trust both yourself and your kids. Biggest fear to date? Will he be able to afford insulin, keep a job with insurance, will we be able to afford to help him with insulin.

“About 5 1/2 months prior to diagnosis my boy had the flu.”

4th sentence: typo, meant to write 2 weeks prior to diagnosis.

I try not to be fearful. Tayler has had 3 seizure unexplained night time lows. I have to admit I still check sometimes in the middle of the night on my 18 year old and usually the feeling is right. Would he have woken up had I not checked. But I did check. Him moving out to go to college scares me. But it will happen and we will figure it out.

My son is 24yrs old, diagnosed at age 8. First low and seizure right after he was diagnosed. We did all the night checks for him and then as he matured he always felt those lows coming on and would wake up. I would always hear his feet running down or up the steps. He went off to college and of course I worried, but he had 4 suite mates which allowed me some peace thinking he wasn’t alone. After college he ended up moving back in with us and he spent many weeks going off by himself doing his thing. With his ability to feels those lows made us feel safe. Then he had to change endo’s because his pediatric endo (he liked him) had held on to him till he graduated college. His new endo didn’t work out ( long story ) and no, his A1’c were never bad, but they scared him to death! Anyway my son became so afraid of high bs’s that he became hypo unaware, having A1c’s in the 4.+range. He no longer feels those lows and has had two lows in the middle of the night, last one we also lost him and he was wearing a sensor, but didn’t hear it.
Of course he is like any other 24 yr old and want to move out and wishes he could do so alone.. I am scared to death for him. I know I have to trust in God, but it’s difficult still finding the peace I need to do so and get some decent sleep..I have to wonder if a DAD would help these now adult type 1 diabetics, but even with one I would worry.
We want to help him as much as we can. My husband and I are at retirement age, so another concern of ours is the expense that comes along with having this disease along with living expenses and good insurance that he will always need to afford his insulin and supplies. He also has Celiac and being gluten free is not cheap. He wanted to get his masters, but feels his medical / living expenses makes it out of the question. I strongly think T1D should be considered a medical hardship allowing them one less thing to worry about.. Affording their needs in order to stay alive and in good control. D Mom Miner here

I am a t1d and have had diabetes for almost 30 years and I have been on my own for some time now. I understand the fear of night times lows but I choose not to be scared of them. I chose to lead a healthy lifestyle, I test my blood sugars 8+ times a day, I wear the sensor and most of the time I’m doing a good job. Highs and lows are the nature of diabetes and I have to take it one day at a time. I know my parents worry about me all the time, and since I recently became a parent myself I know nothing I will say make you feel less worried. But you have to trust your kids with diabetes like you would with anything else

Thanks for bringing this up, Tom. College wasn’t really a concern for me, because (regrettably) I ran high most of the time and my A1Cs were in the double-digits, so there wasn’t a risk of dropping low and not waking up. This was the choice I made rather than face those Lows. But that was a long time ago. I personally don’t worry about this every single night these days, but I do whenever I’m very high at bed and adjusting. Having a spouse who knows what to do is invaluable… even though I wish she never had to experience this because of me. My mom actually “stalks” me on Twitter and when I haven’t posted anything at a decent hour, she sends one or a text/email just to make sure all is OK. Especially now that I’m working from home and alone most of the day. Yes, I do fear this regularly, but I don’t let it cripple or paralyze me.

Your insight is greatly appreciated. Iam hearing from so many about this topic and many parents are learning much due to the input of so many. Knowledge is a good thing—let’s share it and not judge it. Thanks again Mike

Our daughter was diagnosed at 3 years old, and is now 27. Our goal was to have her live her life. She did have periods of ignoring her diabetes late teens or so . We were there FOR her, but had her accept the responsibility of what had happened and how to fix it. I’m sure growing up she got sick of hearing: “You can be whatever you want, as long as you take care of your diabetes. Live Your life. When the going gets tough, the tough get going. Suck it up. Life is not fair. You will always be our baby” While writing this it certainly seems harsh, yet we wanted her to go to college, get a job and live on her own, be whoever she would have been had diabetes not invaded our lives. She has done all of the above. She knows that we also had to manage diabetes, and now understands that for a parent it is more difficult to care for a child. We would have traded with her immediately – still wold today. We now discuss her management and we can give her advice and help her. Our most consistant advice is for her to call her doctor, endocrinalogist, diabetes educator, etc. They and we are more than willing to help those who are helping themselves.
It is such a tough disease to give pointers on. Every family is different. We received many good ideas, and just as many comments that would not work for our family. We made mistakes and we had some very good choices as well. However, diabetes is always there and we all have ACCEPTED it. We learned not to fight it, but work with it. We did not talk about the effort diabetes is every minute, hour, day and year. We do not complain as that would accomplish nothing. Therefore acquaintences sometimes comment to us that diabetes is “doable.” Not a big deal. It is very big. We have not let the worry, management etc rule our lives. We are always aware of diabetes, but more important are the school plays, sports events, holidays that she had.

I’ve been T1 for 37 years. Also have a 4 yo T1. As a mom I imagine worrying about her. But she is already independent and I know as she gets older she will do more on her own. I had never worried about night time lows before, or not waking up in the morning. My parents never tested me at night, but things were different back then. As you get older, most people with D ( I said most) will wake up when low. I’m sure my parents worried about me when I was on my own. I broke my foot one night trying to get downstairs in the middle of the night to treat a low. When they asked too many questions, I usually would stop answering. But they usually only probed if something had happened. I’m also the baby, so that does not help me, never has. I know they’re there if I need them, but they know I’m an adult who has been taking care of myself a long time. Everyone had to adjust and learn. It’s doable. But, it’s easier for me o say that as a T1, than as a mom of a T1.

An excellent topic – I so often wonder how much my parents worry about me, and what, if anything i’ve done that increases or lessens the worries. I’ve been at this a few years (34 years T1D) and MANY a time i’ve thanked my lucky stars and a great liver for carrying me through. I have woken up with BG reading LOW (less than 1mmol/18mg/l) and HIGH (I don’t even know how high that is!), and survived.
Most of the time i’ve lived alone. I’ve never wanted to rely on anyone, and maybe i’ve kept people at a distance to ensure that didn’t happen. Being on my own, I’m careful, I run BG’s higher if i’m worried, if anything wakes me up in the night I test my BG without a second thought (I sleep with a meter and keep a light on on my bedside so testing is almost done without having to disturb that wonderful warm pocket you create while sleeping 🙂 and always have glucose of some kind in bed with me as well!).
I always tell my mom… don’t worry, and I mean it! Being self reliant teaches self reliance, I’ve learned, not through experience, but through being held accountable to myself, to take good care, act responsibly, not to ignore any “signs”, yet still live like I have no need to worry. Well, all that and, I sleep with a phone at my side with Mom and EMS on speed dial (not that i’ve every called… but it’s nice to know they are there!)

I was in college at diagnosis and initially my mother was very afraid and wanted me to keep sleeping over.
I became more fearful about a year later when I started waking up low with no symptoms, and asked my parents to call in and check on me (just that I was alive and conscious, not what my bg was) every morning. The fact that they have trouble remembering to do so is probably a good indication that they don’t worry about it much.
Most mornings I check in with them, because I don’t have anybody else in my life to check in with. If I had somebody else to check in with, I would do that. But I don’t.
I’m not really afraid, I just have heard of people being found in hypo comas after many hours and being saved… I would want that to be me, instead of being the guy that’s discovered two weeks after he missed his rent check.

So first off, I wasn’t diagnosed with T1D until the summer after my freshman year of college, meaning my experience is a bit different from that of growing up with it. I was actually diagnosed by a fluke as well, I was completely unaware of the symptoms at the time (thought it weird that instead of putting on a freshman 15 like my friends I lost 15…but had no clue what T1D was or that I could get it). I was diagnosed when they found sugar in my urine during a drug test for a summer job. Naturally, being summer vacation from school, I was home with my mom during those first months and we both had a lot of learning to do. From the beginning I was more concerned with keeping tight control and avoiding the long term complications of hyperglycemia (although I was also somewhat unaware of the real dangers of hypo’s especially at night). I was on injections for the first 2 months and experienced a lot of dramatic swings in BG levels (especially working manual labor outdoors). I made the decision with my endo to get on a pump ASAP and tackled learning everything I could about it and how to use it to manage T1D as best I could. I knew at the time how worried and afraid my mom was, but had no idea the extent of what she was going through alongside me. Years later she has told me she was very afraid and had privately discussed with my endo whether or not she should allow me to head back to college on my own in the Fall. I’m so thankful that he told her without question “YES!” and that she was able to listen and control her fears. I don’t know if the fear is something that will ever go away for her, and I also know that it isn’t from a lack of trust, but love. In the time since then I’ve witnessed firsthand what can go wrong with nighttime lows with one of my good college friends who also had T1D, which has also raised my own fears about what happens when I’m dreaming. But I think the biggest thing here is not letting fear conquer our lives. Be smart, have a plan, work hard, do all you can to manage T1D well (or help your child do these things) and then let go. Life is unpredictable (much more so with T1D than without) but that shouldn’t stop us from living it to the fullest. Since college I’ve lived on my own for most of the 5 years (occasionally bouncing back home between endeavors). I’ve managed to live out West for a conservation biology internship, hike 14,000 ft. mountains, camp and hike throughout the National parks, run and bike in endurance events, ski, practice tae kwon do….really do anything I wanted to without worrying just by being aware and prepared. Just my two cents worth.

My son is completing his first semester at college. As it ended up, he is attending a university only 4 miles from our house, but he lives in the dorm.

I didn’t give him all the diabetes responsibilities at once. I make the endo appointment (he goes without me), I order the supplies and make sure he has enough (mostly). He is responsible for testing, carb counting, bolusing and changing the site/insulin and letting me know he needs supplies.

Each week, we see him and during the course of the visit, I take a look at his readings and pump data. We talk about issues he is having (like running out of insulin, patterns of highs or lows, lack of testing at certain times). I tried these conversations while he was in high school and he was always offended. Now he listens and tries some of what I suggest.

He has discovered that eating high sugared food doesn’t help his blood sugar and is choosing to forego the apple cider and the cookies he loved to consume at home. This would have never happened in high school.

He is looking to transfer to a school away from home. It would be good for him, but I am glad that we have this chance for me to offer input to help him manage. He knows he feels better when his sugar is in range.

Concerning lows: he has woken up very low, but he did wake up. I knock on wood that he has never had a seizure and hope we can identify the patterns of lows before there is a problem. Not exactly a happy situation for me, but I don’t panic about it.

My son was diagnosed with Type 1 diabetes the night he graduated high school. I had a suspicion of it because he used to get up in the night to urinate, sometimes drank a lot of water, but every time we had him tested everything was fine. In the beginning, he experienced a ‘honeymoon’ phase- he was still producing insulin and as long as he didn’t eat concentrated sugars and exercised regularly, his blood glucose levels were fine. He was also part of a drum corps which is very athletic, long hours of practice in the summer heat, and he was on the road shortly after diagnosis…. I was a wreck. He made it through the summer with only two admissions to the ER to manage BG’s over 400 and he was hypoglycemic only a few times with clear symptoms.
At first, he was very interested in this new part of his life. Everyone was trying to help him finish his season in drum corps and he was very comfortable with testing and administering his insulin just about anywhere. He wanted to talk about it. But after a couple of months, the novelty wore off and he started getting a little careless. I had been ‘hovering’ and it seemed warranted because if I didn’t ask, he didn’t test himself. Complying with a low carb diet was not something he wanted to do from the start but once the doctor provided him with Novolog pens to give himself bolus coverage he started eating half a package of Oreo cookies and half a gallon of milk a night. Breakfast went from balanced back to enormous bowls of Honey Nut Cheerios and two cups of milk. He had been testing himself at least twice a day but then it got to the point I had to put the kit in front of him and ask him to test. He kept talking about how easy it would be if only he had a pump.
His honeymoon period ended and his endo said he was going to have to get more serious about treating his diabetes. His A1C was 9 point something- not a good number. He didn’t spend much time talking about the consequences of careless treatment of T1D… just said eventually bad things would happen. I’m a retired nurse- I haven’t worked in the hospital for over 10 years but I know what end-stage diabetes looks like. I’ve seen what happens to people who don’t take care of themselves for one reason or another. I didn’t want to scare my son but he seemed to be in denial. There were no immediate consequences unless he was having a low BS episode and that was easy enough to fix. He wasn’t symptomatic when his BG was over 300 or even 400 except for getting up during the night to urinate. And it wasn’t ‘cool’ anymore to whip out the testing kit and take an insulin injection in front of everyone when we were out… it was a nuisance.
When he got his insulin pump, he was thrilled. He thought it was going to be care free and that it would require little effort from him. He was 19 when he got it…. that was last spring. He was taken back somewhat when he realized he had to keep testing, giving boluses, and then retesting. His blood sugars stabilized dramatically for the first month or so because it was a new toy. He was also at a point that he wanted me to back off…
This was tricky because when I did just that, he didn’t test his BG. He changed his infusion set when he thought of it or when the reservoir had to be filled/changed. I kept telling him to make sure he was all set with the auto-ship of his supplies, gently asked if he had filled his scripts for those he had to pick up, and then had to double check to see if he had what he needed. For all the lamenting he did about me needing to ‘chill’ he did little to assure me he was on top of his situation.
Then things started getting a little more scary. He got a job, which was good, but he wanted more freedom. He was 19. But we ended up in the ER a few times with high blood sugars…and finally on New Year’s Eve he experienced DKA. He spent the day in the ER, the next night in ICU, and another two days in the hospital trying to get stabilized. It was a big wake up call- so I thought.
Apparently he had run out of supplies for his pump after assuring me he had ‘plenty’. He’d been using pens we had on hand in case his pump malfuntioned but didn’t tell anyone. He was supposed to get paperwork back to the supply company but missed a doctor’s appointment because he failed to get his A1C drawn and was too embarrassed to go. And he couldn’t get his supplies without the doctor seeing him but he wouldn’t go. When he ran out of infusion sets, he wasn’t used to the lack of basal drip and started feeling weird. And then he got the norovirus on top of everything. I took him to the ER after he started vomiting and his BG began to climb. He was spilling ketones by the time we got to the ER.
You’d think all that would get more motivated to take better care of himself. It didn’t. I’m lucky if he tests himself once a day. I’m also lucky if he eats. He’s also taken on a few lifestyle changes that don’t seem helpful for his condition either- partying and just not eating right.
Now he tells me he’s moving out. He wants to be ‘independent’. This from a young man who can’t remember to keep an appointment or fill a prescription. I’m worried he won’t pay his bills, maintain his car, that he won’t wake up the next morning after a party. I can’t do a thing about it either.
When he was diagnosed with T1D, it changed my life. He is the youngest of 5 children- the only one with diabetes. I’ve watched the others come and go without too much concern- even when they got into tight squeezes. But I”ve never had to worry about a life threatening illness that just isn’t going to go away, one that will eventually make my son a very sick young man if he doesn’t start taking better care of himself. Some of my friends say I’m just having trouble with my ’empty nest’ .. they are wrong. If I thought he had his priorities in order I would be much more relaxed but this is not the case. We never know what’s around the corner- any of my kids could have an accident and I’d never see them again. But my youngest son has a disease that makes me think about when he tested his blood sugar the last time every day and makes me bite my tongue to keep from nagging him about it.
I don’t know how I will deal with this over the next several months, or the rest of my life, but to anyone else out there going through this… I know what you’re feeling. It’s awful. I’m looking for the silver lining. Some have said, “Hey! You don’t have to worry about him anymore! He’s out of your hair, let him get a taste of real life.” I don’t think I’ll ever stop worrying about him but I will have to accept there is no more I can do but let him go.

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