We Need Advice: Things Are Not Going Well

When he was young and I was the main caregiver, his A1C was 6.6. We made a great team and communicated well. We never fought about his diabetes.

I let go quite some time ago because he wanted to do things his way around the time he turned 17. I gave him his space. I stopped asking about his numbers. I stopped reminding him to bolus ahead of his meals. I handed the majority of night-time checks over to him. I thought I was doing all the right things by giving him his independence with his diabetes.

Unfortunately, tragedy struck and both my parents died unexpectedly due to awful circumstances within months of each other last year. My son was very close to them. He and I have been going to counseling since, separately, to help us get through it. I thought he has been doing very well. We've both been in a better place about the loss of my parents.

In the last month and a half, his attitude has been awful and he's been short-tempered and easily frustrated. At night, he stopped checking himself, so I started getting up to wake him because he was not waking up on his own. He ignores me and falls back to sleep. When I stay by his side to try to fully wake him, he snaps at me and gets angry. Three nights ago, at 2AM, he refused to get up and check his number. So I went ahead and did it while he got mad and griped at me. He was 46 with 2.0 units active. I hate to think what could have happened to him had I not checked.

But still, overall, I have backed off and tried to let him work through his own things. I created opportunities to talk, to listen, and to show him our support and love. When none of this seemed to help him out of the trench he's been in, I suspected maybe his numbers may be roller coasting and thought he might not be feeling good, which might explain some of his foul moods.

Tonight, I went through his meter and recorded the readings. I went back 15 days. He has only been testing 1-2 times a day, and those numbers were in the 200-400 range.

Next, I went into his insulin pump and recorded his bolus history. I could only go backwards 5 days, but in those 5 days, he repeatedly plugged in false BG numbers (he went with 100 and 120) and bolused off of those. (That explains all the highs I found on his meter).

Yesterday, he went from 8AM to 11:30PM without testing his BG once. Same thing today.

This means he has been getting incorrect insulin doses.
It means he has had highs that he never received corrections for.
It means he has not been checking for ketones.
It means he's been driving without testing his BG first.

He has been told repeatedly by his Endo to start bolusing before meals, yet, he still continues to bolus after.
He refuses to wear a CGM.
He refuses to write his numbers down.
He's not rotating his pump sites as directed by his Endo.
His A1C is in the high 8's and won't come down.

I took away his car keys until further notice.
I dug up the clipboard and the BG log sheets which are now on the kitchen counter, next to his meter. EVERYTHING is going to be written down, even if I have to do it.
I cleaned out his diabetes draw, his bag, and the cupboard and got everything organized. He had everything in shambles with expired strips and expired insulin all mixed in with the good stuff.
I reminded him of the danger he is putting himself in by not testing and by bolusing off of false BG's.
My husband has offered many pep talks and encouragement.

What else do I do? He will not pick up the ball, but he lashes out at us if we try to help him. He obviously is not up for doing it on his own, yet, he gets angry when we step in to help or remind him.

I am at my wits end.

 

You literally have 10x the experience I do, but it sounds to me like he needs a dose of realistic hope.

I think you can point to the following three things, particularly #1, as things that might change his T1D day to day in a drastic sort of way.

1) Bionic pancreas
2) Viacyte going to clinical trials with 40 (!!!) people for their encapsulated islet device
3) Diabetes Research Institute going to clinical trial with Biohub

These are real things that have been in the pipeline since he was diagnosed. There is hope, and its not false.

 

Those three things that were listed are things that are not going to be around for at least three years, maybe longer.

I would contact your son's diabetes team, ask them for advice.

 

I have found the business of copiloting diabetes to be one of the most challenging tasks we've faced since diagnosis.

My only suggestion would be to try to shift the dynamic. Plan a dinner,or a hike, or some family activity, invite your son to join you and try to sit down with your adult kid and ask him how he's doing, how he thinks you are doing as a family and discuss things that you all might like to see done differently. I'd focus less on diabetes and what he's doing or not doing and more on the big picture of his life. Is he in college and is that going ok? Is he living at home and is that an issue? Are other aspects of his life going well? How is everyone coping with the grief of loosing both of your parents? What would he ideally like from you in terms of support? What part of it is hardest for him? etc etc. You may not get answers to the problems that are unique to his diabetes, but you'll be opening better channels of communication and treating him like a partner and the young adult that he is, and for whom the standard teen discipline tools may be ineffective and possibly make things worse.

Your son's A1c isn't great, but I don't think it's particularly off the charts unusual for an 18 year old.

Good luck. I hope you guys can get to a better place.

 

This is great advice.

I also think you need to pick your battles. Is it really that important that he pre bolus's and writes down his numbers? I guess I would figure out what is non negotiable (ex: checking BG x times per day, testing before driving etc.) and start with that. Maybe together you could come up with what needs to happen so he gets his car keys back.

I have found that once I start neglecting diabetes tasks it just gets harder and harder to get back to doing things as I should. Starting small tends to help.

Personally, one of the worst things some one can say to me when I am upset with diabetes is "oh, in a few years there will be an artificial pancreas/cure/smart insulin and you won't have to worry about this anymore." First, they have been saying that to me for 10+ years. And second, I'm not really worried about the future but rather getting through the next day and week. I guess some people might find it comforting but not everyone.

 

This is hard. You have gotten some great advice. The focusing on other stuff not diabetes is a great place to start. If you are able try and go for a hike as said or walk and just have a casual talk, no questions really, just walk and listen. Agree try and start with look I worry about the driving can we agree that if you test before driving you can have your keys. I would worry less about numbers and just having him do some basics to keep save and encourage activities that make being in control more worthwhile, sports or running or hiking etc. agree his Endo team and counselor may be able to help with this. A Moms voice at this age tends to be very hard for most males to listen to, too much guilt about being a failure for their Mom drowns out everything else. Good luck and sometimes the most quiet gentlest response and approach works the best even if we want to respond in another way. Very hard. I tried to listen to my kids at that age as if I was meeting them for the first time, no history, no assumptions. Ali

 

Yes ^^^ This. I've always copiloted so don't have the experience of having to let go, but it's still very challenging when you know they are not doing their best. I personally try to get into their brain and figure out the WHY of it all. Take him out to dinner and have a nice talk, don't focus on diabetes but definitely bring it up in the whole scope of conversation. Find out what he wants to change and then work together. I wouldn't arbitrarily take over his care, but I'd tell him you are going to get more involved, then work together to make a plan.

8 isn't wonderful, but it's also not horrible. I'd personally start with checking his meter every day, and let him know you will be doing that. See if that simple oversight is enough to make him test more and get better numbers.

Good luck. 17 is a challenge without diabetes!

 

Yes. I often thought how difficult it must be with that transition from parent management to complete self management. Diagnosed at 18, my son always self managed. He cares about being healthy and is diligent, but he wouldn't meet all your criteria. Maybe your son is not comfortable pre-bolusing. It's not all that unusual I wouldn't think for someone not to want the cgm site attached. Except for the first week after diagnosis, my son hasn't written down his BG numbers.

I agree with others on getting together with your son. Maybe there can be compromises on both sides. I don't think it's realistic to think he will be perfect and align with all aspects of how you cared for him. I hope you can get to a starting point where he improves.

 

I know your son has been going to counselling for the sudden loss of his grandparents ( I am sorry ) but can he be depressed? I would as Brenda said talk to his doctor to help come up with a plan. Good luck .

 

It does sound like there are still some emotional issues he is working through. I agree with your decision to take his keys if he is not testing regularly or before driving. It sounds like he is not even doing basic care, so you might want to reevaluate the goals and expectations that you have. Other than focusing on pre-bolus and CGM or ketone testing, I would focus on basic care, basic testing before meals and bolus to cover meals. I would make an agreement that he do mealtime testing and testing before bed or at least basic care vs. focusing night time checks. He can have independence within boundaries. He may be rebelling against the diabetes or the fact that you are managing the diabetes more tightly than you have been. At this point he needs support and the neglect of the diabetes is an outward sign of a deeper emotional issue. I hope things get better for you guys...that is tough situation where needs to want to help himself and improve his care.

 

He's using Apidra - so I don't see the need to prebolus. I would take that off your list. Likewise the CGM, the writing down numbers, the rotating sites, etc.

Key non-negotiable items are:
- measuring before each meal and at bedtime (and bolusing/correcting as needed)
- measuring before he drives, every time.

Until you have compliance on these issues, he should not see the car - use of the car is a privilege. He should not be using it when the D management is out of control at the most basic level.

 

I agree with Wilf, but would like to add that most people still need to pre-bolus when using Apidra. But you can get away with 10 to 15 minutes before eating instead of what for some people is much longer than this when using one of the other rapid-acting insulins.