Advice on helping an Adult with T1D

Hi! This is my first post. My stepchild who is now 25 was diagnosed her early 20s. Currently she is experiencing both highs and lows daily. She is living on her own apart from us with her husband. I am trying to avoid advice giving or butting-in in any way. However, I fear for the physical complications she might suffer in the future for not learning to manage this better. I feel asking too many questions or making suggestions might be unwelcome and drive her away. Things I want to know are, is it normal to spend several hours a day with blood sugar over 400? How many lows in the course of a week signal that it’s time to call the endo? Where can I get educated on the ins and outs of managing T1D with shots and a cgm specifically. Is this all stuff that she needs to do on her own without our help? I know it must be so hard to have an illness with you all day and all night for the rest of your life that is directly affected by what you eat and everything you do. Do I just need to butt out on the technical stuff and just love her and support however she chooses to manage this?

Advice from anyone is appreciated as I want to look at this from perspectives I may not have myself. Thank you!

Hi @AT1DSTEPMOM and welcome to the forum. Managing diabetes is a family affair and in many ways always will be. I once read about a set of parents who, following their daughter’s marriage, felt a sense of relief because now her care fell to her husband. When your child (or stepchild) is the age of yours - married and on her own - it can be a sensitive area. She is an adult after all and while you will always be in mom mode you should use your experience and instincts to determine how to approach the topic with her. Some “kids” may be happy to teach you while others want you to back off (which was what I did), in which case you want to tread gently.
She’s been diabetic for a few years now, but you didn’t say how long you’ve been part of her family. If you’re more recently married to her dad you could ask her to educate you on diabetes, and you could ask questions in a way that comes across as learning rather than probing.
Numbers in the 400s are dangerous over a long period of time. I’ve been there, and it can take at least a couple of hours for my numbers to barely start dropping once I’ve taken measures to correct them. They should be addressed quickly and according to instructions from her doctor. If she is in the 400s followed by lows, it may be that she is over-correcting by taking more insulin than she needs at one time, or stacking insulin - which is taking a few doses at different times because your numbers are not coming down as quickly as you wish. If they’re soaring after a low she could be over correcting.
Those are just a couple of possibilities and I’m not going into very much detail because it sounds like you’re just learning and I don’t want to overwhelm you with too much at one time. But since she is going to extremes with her numbers she should check in with her endo. It’s not unusual to need to make adjustments from time to time. Experienced diabetics often do this on their/our own but she may need some guidance.
There is a Resources tab on this site that may have some helpful information as you are trying to learn. Please keep us posted on how she’s doing.

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@wadawabbit Thank you for taking the time to share your thoughts. I definitely need more education and I will ask more questions as I get opportunities to. Mostly, I will just keep being there for her and showing up in whatever ways she needs me. Thank you!

@AT1DSTEPMOM Hi Michelle, and a warm welcome to the TypeOneNation Forum!

You have asked many important questions based on your acute observation, for which I applaud you. And as Dorie said, under the “Resources” tab at the top of this page, and at other JDRF pages, you will find some worthwhile information for managing the autoimmune type diabetes; the American Diabetes Association also has lots of trustworthy information, but much of the ADA information is for other of the several types of diabetes. I suggest that you could become ‘diabetes educated’ and let your stepchild know you are available if she wants to talk. Generally speaking, many excursions into the “400’s” is not good, and in the long run very possibly can cause severe body damage. As for calling her endo when she experiences lows, how low? One severe “LOW” where she passes out and needs acute medical attention is enough to contact her physician. If her “lows” are the type that SHE recognizes and ,anages on her own, I would not call the endo, but she should be certain to discuss these with her endo. I understand, that many wild swings between high glucose and low glucose is what causes long-term diabetes damage.

TypeOne diabetes is best managed by “Doctor Me”. What this implies, and demands, is that your stepdaughter must want to take care of herself, and that SHE learns how to best manage her diabetes. It isn’t an easy task in that it demands that she study her own body and learn how different foods, various activities, and insulin affect her. Yes, study reliable information - and here Michelle, is where you could play a valuable role - if she will let you.
I’m NOT a licensed medical professional; my suggestions are based on what I’ve learned during the last seven decades living with my diabetes. In the 1950’s and 1960’s I did not manage diabetes at all, and now I’m paying for my mistakes.

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@Dennis Thank you for your candid reply. I’m sorry you are suffering complications, and this is my fear for her too. I will look at the resources you’ve suggested. Finding the courage to be knowledgeable and supportive while accepting that only she can learn about and take care of herself best is key. Thank you!

Your best course of helping her might be to get her on a pump or omnipods and off of daily injections. Injections are pretty rudimentary form of treatment, if she’s already got a CGM she’s halfway to having better outcomes, She is the only person that can regulate her BG. Since you know she has been 400, maybe that is a call for help? Maybe just help get her to a diabetic patient educator and a Endo that is responsive and get her on the best tools.

She has tried several different pumps. Her decision to use shots/pens has been better for her and also more cost effective. It’s just that T1D is hard in so many ways and affected by more than just food. I am afraid what is happening now is stress and burnout. So support is what is called for.

Some people do, do well on shots although pumps are the “state of the art” technology. That said they are a tool that takes willingness and discipline to use.
I’m guessing the answer is “no,” but has your DIL shared anything with you or as far as you know, her husband, her dad, her birth mom - or anyone else in her circle for that matter? I know you don’t want to push or intrude, but it could help to let her know you’re concerned about her numbers and would be happy to listen if she wants to talk. And sometimes even more experienced diabetics cam benefit from some professional counseling. Unfortunately that can be a very delicate subject to take on if you feel you are more on the sidelines.

It’s entirely possible to manage diabetes effectively on multiple daily injections; don’t let anyone worry you that your stepdaughter won’t be ok until she starts using a pump. It’s a very personal decision and sounds like one she’s already carefully considered.

I think it’s great that you want to help your step-daughter, but you do also have to be careful not to push too hard. My advice is to learn what you can on your own and then offer advice when your stepdaughter asks for it. It might take a while, but if you give her the space she needs and show her you’re willing to listen instead of “butting in,” she’ll start reaching out for help.

As to your other questions…
I’m not sure I’d say it’s “unusual” to spend several hours over 400 (Lord knows I’ve been there), but it’s definitely not recommended. Certainly doesn’t feel good.
Lows in the course of a week, that’s up to your stepdaughter. It’ll depend on how low she’s getting, when the lows are happening, how capable she feels of treating the lows, etc. For me, the point when I said something needs to change was more than 1 low per day at work. I don’t want any lows while I’m at work, but 1 per day is completely unacceptable.
I think someone already pointed you to the resources tab. I was using multiple daily injections until this past February (been diabetic for 26 years) and didn’t even have a CGM until about a year ago, so if you want to message me with questions, you’re more than welcome.

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Thank you so much for joining this thread. There are some really great and helpful bits in ur reply. I am finding that by not being pushy in the least that she is reaching out more and even sharing wins too. Though this kind of loose and gentle hands off approach isn’t my style, I realize it may be working for her. I really appreciate your offer to message you with any questions and I just may do so. Thank you!

Hi again. I’m reading the new edition of Think Like A Pancreas, and in the section on supportive health care he refers to a book titled Diabetes: How to Help. I haven’t read it but you might like to check it out.

Thank you! I will take a look. I found some other booklets and they should be arriving in the mail soon.

Hi! I’ve been a T1D for 15 years. My biggest concern is the high blood sugar. Being over 400 multiple hours per day could potentially lead to complications as mentioned. I’m glad to hear she has a cgm. Has she told you anything about her endo? Whether or not she likes them? I think that can be huge in determining how comfortable you are reaching out. If she’s comfortable adjusting her insulin on her own, then she can try but if I kept having lows daily I’d personally reach out to my endo. With my cgm it’s easy too because my endo can log in and see my blood sugar patterns through my Dexcom. I’m not sure if anyone else mentioned this, but you didn’t say if she was just struggling with control or struggling with the fact that she has diabetes? If it’s the second, I would recommend talking to professionally. I think that diabetes can feel like a loss especially the first few years when everything is new and constantly changing. I never wanted diabetes for myself, but in some ways I feel lucky that I was diagnosed when I was a kid versus an adult. I didn’t feel like I lost as much weirdly and I think it’s because it was already second nature to me by the time I was a teen.