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

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.

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!)

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 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.