How Much Should I Worry

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I already posted this in the “tu diabetes” forum but I thought it wouldn’t hurt to ask here too. Thank you to Marie20 for your input! It means a lot.

TL;DR : Partner (F19-T1) seems to struggle keeping track of blood sugar, want others’ opinions on how involved I should be. Essential question at bottom

I’ve been with my SO for about 5 months (Commutable long distance ~ 5 hours) and she got her type 1 diagnosis about 7 years ago.

I’m honestly more curious about other people’s experiences at this point, since I myself don’t have any relatives with the condition. She’s very open and comfortable about talking about it, but she has some avoidant tendencies that make it hard for her to consistently monitor her sugar. She has a Dexcom and a pump, and generally gets consistent updates (however, lately it’s been neglecting to notify her or myself about low or high blood sugar episodes), but I’ve noticed she doesn’t bolus before eating, and if she does it’s usually with fairly arbitrary units (she usually always uses 45 carbs before meals).

I’m a bit of a hyper-analyzer, so I don’t want *at all* to impose my limited understanding on her management styles, and I don’t want to be overbearing over her care plan.

She has admitted a few times that she *does* want someone to be on top of her about it, though, so I try to remind her gently when I notice it being high or falling fast. But sometimes she stays above 300 for more than 3 hours, I’d say about 3 or so times per week on average this month but it really varies. She seems to have better weeks than others, but I don’t really know if it’s my place to bring it to her attention when it seems like it’s been high for longer than usual. She’s also complained about easy bruising on her feet, which made my heart sink.

According to her, her most recent endocrinologist appointment seemed to be really positive, so I’m hoping I’m overreacting.

I really love her, and I don’t want to overbear, I love health and pharmacology so this stuff is honestly really fascinating to me in a very non-judgmental way. But it’s her life, and that adds a level of sober dread that makes me question whether being on her butt about it is worse than facing the health complications later. I would take care of her in a heartbeat, but I want her quality of life to be positive. So if I can contribute to her health in any way, it would be a blessing and honor.

I didn’t see many posts in this exact situation, because she’s not borderline neglectful, but I do see (at least according to websites, which yes, I’m not proud of for being my only source other than her to learn about it) glucose patterns that aren’t healthy.

I think my biggest “concerns” for down the road is cardiovascular issues. It’s a reality I’m completely willing to face, but I wanted to get an idea of your guys’ experience. I want to be as sensitive to her needs as I can be, and we’ve had a couple conversations about it, but I wanted to get your guys’ opinion of whether this sounds out of the norm for someone who has type 1.

Anyway. Some people I’ve seen on these types of posts comment things like,
“You said you don’t want to leave, but do you want to keep doing this for the next 10-20 years, depending how long his prognosis is?”
Which is completely valid. And so far, the answer has been, “yes, I would keep doing this for as long as it takes”. Which is why I want opinions on how I can approach this best. I don’t want her to rely on me for her health needs, but I also don’t want to not be a support if she needs it.

Big question:

How high for how long is normal for you? (I guess this would be TIR)

For those of you with partners, what are protocols and boundaries you have?

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Hi @Elephants22,
Welcome to FUD.

I think most of these issues sound like they are not as much about diabetes as they are about her coping mechanisms.

There are pumps that can be used that offer more of a hands-off lifestyle. They are more automated and interact with the CGM and make automatic adjustments.

I don’t think you mentioned what type of pump she is using (I apologize if you mentioned it and I missed it!) So that might be something that you can help her investigate changing, if there is a better pump for her that will make it easier.

A parent can do a great job caring for a child with diabetes. But when it comes to adults, realistically if someone is not engaged with their care themselves, it’s just a long uphill battle for someone else to do much to help them.

I know that is not a great thing to hear, but I think that’s just the reality of the disease.

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One other comment.

This might not be the best question to start with, because the members of FUD don’t necessarily represent what is “normal”. Instead, they represent what is “possible”.

The best thing for any us to do is to take stock of where we are now, and then figure out what steps can help us improve. Little by little, we each get better..

As far as figuring out how to make those improvements, that’s where the members of FUD shine - in helping each other with those improvements

But it generally starts with the person’s desire to improve. Without that, it’s tough.

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I think your concern is very admirable!

My motto with my son has always been “get in, get out.” Meaning that, for both highs and lows, my goal is to get out of that zone as quickly as possible. There isn’t really a duration of time that I’m ok with…i just know my goal is to get in and get out as quickly as possible.

As far as boundaries go, my son was diagnosed at 2 and is going on 12 so that isn’t really a thing yet. But when he’s an adult I’ll help where he wants my help, I’ll always let him know I’ll be there. I’ll provide a stipend for him each month to help offset the costs if he needs it, and he will know I’ll be there however he needs me.

But as @Eric indicated, once they become adults, they will choose how well (or not) they manage.

I would add though that someone adding a certain number of carbs over and over isn’t strange. Once you’ve had diabetes for a long time, you have a good idea of ballpark carbs you should enter. We are constantly “sugar surfing”…making best guesses on carbs, and we don’t do a lot of carb counting except for school foods.

For @Liam-M, my goal is to teach him good management skills and support him as he transitions into teen and then adult years. I plan to hold him more and more accountable for making decisions as he progresses to adulthood, and then when he becomes an adult just always be there whenever and however HE wants me to be involved.

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That depends entirely on the two personalities and the relationship. There’s a spectrum all the way from she is totally independent with no interference from you to you are the mommy/daddy who takes care of everything and she meekly submits to it all with a minimum of fuss. There are all kinds of relationships and you guys need to figure out what works for the two of you, or maybe there’s no solution that both of you can accept so the relationship crashes. So far it seems like you are working with a light touch and minimal intervention; I can’t tell whether that’s what’s best for the two of you.

That will cause higher blood sugar after eating: the carb digestion has a head start before the insulin has a chance to kick in.

On the day I was diagnosed, the certified diabetes educator that trained me gave me a touchstone: “If your blood sugar is too high, you need more insulin.” If I reach 170 I’m already taking lots of extra insulin, knowing full well that in another couple hours I will need to be taking glucose to sop up any excess before I go low, so I never see a BG of 300. But I’m not normal, and I recognize that.

There’s a simple metric from the blood tests that will give an objective metric about whether she’s in great danger. The doctors say that if the A1C is under 7, that greatly reduces the risk. The farther above 7, the greater the risks. Elite diabetics tend to aim for the 5s or low 6s, but to get there takes learning lots of techniques and also takes the kind of personality that can direct frequent attention to the BG and the interventions without becoming upset or discouraged. If you want a more detailed look, the 90-day AGP report from the CGM splits the BG into 5 bands: very high, high, in range, low, and very low. You want 70% or better time in range, and very small time in the very low and very high bands. For myself, I want close to 95% in range, and I want the very high and very low bands less than 1% each; I know that’s unneccessary and abnormal, but it makes me think that I’ve zero’d out the likelihood of preventable bad outcomes.

There’s a huge variety of things that can go wrong from diabetes, but in some sense there’s nothing special about that. Human beings in general get heart attacks, strokes, cancers, alzheimers, hearing loss, blindness, and all other kinds of ailments. The only thing anyone can do, diabetic or not, is take reasonable care of yourself and then you get what you get.

That depends entirely on the personalities, doesn’t it. In my case, I pretty much just take care of everything myself, but if my wife notices that I seem stupid she may ask what’s my BG and I’ll tell her and it doesn’t bother me to be asked, or she’ll ask me to do some simple arithmetic like what’s the cube root of 1000 and if I’m low my impairment will be clear so she’ll tell me to go measure BG and eat glucose. Doesn’t bother me, but others could easily consider that highly offensive and invasive.

Good luck to the two of you.

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@Elephants22 You’ve already been given great advice in the responses you’ve received. Ref how involved you need to be or will be allowed, that’s a question between you and her. I recommend you have a sit down serious discussion with her about both of your feelings regarding the issues you’ve brought up. If she’s receptive to having the discussion, lay it out just as you did for us. Ask the questions of her, take in the responses, let her know how you feel and that you will or will not be involved as she likes. Recognize her responses may change your relationship now rather than later, and that’s probably a good thing for both of you. Her answers and how you feel about them will guide your next actions and decisions regarding the relationship and both your roles in it.

Be prepared and be as insistent as appropriate to the reaction she has. Some T1s/T2s are very closed off to letting people know or be involved (even those that may seem open about it), some are very open, and there’s everything in between. Even those somewhat closed off may be open to allowing an SO or friend monitor their BG to “help out” and that seems to be one of your questions: There’s an app for that! Check out the Dexcom Follow app ( Follow App for Friends & Family | Dexcom ); depending on how she takes her insulin, there may be a follow app for that as well.

Regarding your comments about alarms, it’s purposely hard to defeat or turn off all of them. With Dexcom, it takes specific user action to reduce or eliminate alarms, G6 more than G7 which offers significantly different alarms and methods. Many people experience alarm fatigue, for most they get annoying, seen as opportunities to a few, have negative impacts in most work environments, etc. Perhaps she’s turned them down or changed the sounds. That said, it’s doubtful the severe low and high alarms aren’t happening. That’s something she…you too if she’ll accept your help…will need to address. But first steps, first, see if she’s open to addressing your involvement.

If you or she has other questions, feel free to post here on FUD. We represent a breadth and depth of opinions not easily tapped elsewhere, with few “school solutions.” It’s up to you and her to sort through them, find what you believe. Best wishes for a good discussion and result!

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Absolutely, it’s something you’ll need to decide on a balance for together. And it might take several conversations and experiments over time to decide what she and you are OK with. And every day with diabetes is different too… Be open to experimenting bit by bit, rather than all at once.

I’m highly involved in my own management. I’ve also had to slowly let my husband into my care – to find the right balance and mutual trust. We’ve tried some things that aren’t very helpful (checking on me the instant an alarm of any type goes off, since I’m already annoyed that an alarm is going off) vs. what is helpful (asking how my BG is when I’m not making sense, waking me up at night when my alarm is going off, calling me when he can see on Dexcom Follow that my BG has been lower than 55 for more than 20 minutes, gently reminding me that insulin takes time when he notices me constantly looking at my pump and starting to stack insulin after meals, etc.). That balance will be different for every individual.

Try not to initiate these conversations while in the midst of a high or low. Personally, highs and lows can really mess with my mood. A high makes me really irritable, and lows make me exhausted and easily confused. I’m much more likely to have the bandwidth to have an important conversation when I’m feeling OK!

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You’ve received some great advice here. Be aware that any help offered during low blood sugar episodes can be fraught with irritability and impatience caused physiologically and primarily by episode itself. Bless you for your willingness to help! As others have said, good communication is key. Your heart is in the right place.

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Welcome, @Elephants22!!

I love your questions, your initiative, your caring perspective, and your open-mindedness!

So if I understood your abbreviations correctly, your partner is a 19 year old female who was diagnosed 7 years ago?

I am in my 40’s…and I was diagnosed at 21 years old…so I don’t want to speak out of school about a teenager’s relationship with their T1D and their blood sugar. Other people on this site are better informed on the ebbs and flows of self-care over the years than I am regarding teen years. I myself have had some years that are less locked in for a number of reasons…and then far more years of really locked in monitoring and self-care.

Big picture, I would say this:
-Someone who is stuck high but they’ve taken corrective action and it just hasn’t kicked in yet, I would not worry about.
-Someone who is stuck high but has not noticed or is not taking corrective action in a timely manner, I would want to know more about the “why” behind that.
-My husband and I were dating when I was diagnosed, and we got engaged three months later. I have always operated fully independently bc I never wanted anyone else to feel responsible for me…but that is also my personality.
-It can get challenging peeling apart which part of an experience is influenced by the diabetes aspect and which part of an experience is just how someone’s personality is. What I mean is that I wonder how differently I would choose to live if I WASN’T prioritizing diabetes all the time. I probably wouldn’t be a different person, but it also wouldn’t be totally the same either.
-If you want to have children down the road…that is the Olympics of diabetes. It is doable…but it is hard and requires 100% commitment every day.
-If you have children and you are a diabetic parent, for me there is always a lot to think about regarding safety and not putting kids in charge of being the safety net for me.

I hope that is helpful information to consider and not overwhelming. And anything that sounds wrong to you for your situation…just ignore it! Not everything fits everyone!

And welcome again and keep the questions coming!

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Here’s the cross-link to @Elephants22 's post in TuD:

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I agree wholeheartedly with this, Rachel - timing is everything if you plan to have any serious conversation with someone with type1. I’m always going to be feeling slightly fraught when BG high or low.

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I love that phrase, Charlotte, fraught has fallen out of use over here, but it is a great word. I would use something a little bolder to describe my emotions when high or low. :rofl:

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Haha, classic understatement @CarlosLuis . I’ve been with my husband for 23 years and I still don’t think he’s fully grasped this one.

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I suspect some people are not as expressive as they should be. My first wife just observed but my current observed and commented. It is from her that I learned just how much my interactions with other people are affected by my BG.

I can go either way; I don’t have the slightest doubt that my first wife knew and completely understood what was happening. I don’t have the slightest doubt my second does either, the only difference is that my second will say it forcefully and what I have learned is very valuable to me though very hard.

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I never noticed this until the last several years. Zero patients and zero filter. Even knowing that what happens it hard control and then after the fact I’m like…really Jim.

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To state the obvious, I don’t know anything about the original poster and the relationship described. I do, however, want to sound a note of caution. There seems to be some imagination on the poster’s part of the coming decades and the diabetic woman in question needing to be cared for and stood by as her health inevitably declines or perhaps she is saved by the steadfast care of this partner.

We’re all free to imagine, but don’t be creepy. She’s 19. You’re dating. Get to know each other and stay out of her business. Marriage and lifelong commitment should be off the table for now if you ask me. If she needs help with her diabetes management encourage her to seek it for herself from professionals and to take ownership herself. She’s still growing up. Help and encouragement and interest are great, but it’s her condition to manage and learn about.

Apologies for being judgmental. Like I say, I don’t know anything about the relationship and maybe it’s not creepy at all but I feel like there’s a note in this thread that isn’t it great that this poster is so into their girlfriend’s health and I just want to say it’s maybe not so great in a youthful romantic relationship.

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Forgot to hit reply hahah, @TTnyc

I don’t expect to be her savior, a black and white “she will fall off a deep end” or “she will get better”, and I don’t/didn’t want to impose myself where I’m not wanted. The only aspect of context that you’re building your assumption on is brief mentions of concern of cardiovascular issues down the road and myself being willing to be a support in time of need. Whether a prospect, or as you phrase it, an imagination of a long term relationship is healthy or not seems like a fairly disjointed critique. The primary goal of this post was to get context for a future conversation with her, not to attack her, build codependency, or imply that I believe she’s incapable of understanding or working with her care.

She seems eager to have me involved with her health, regardless of a future. We’ve had a number of small conversations about it since this post, ones I’m better equipped to approach thanks to responses I’ve received. I don’t think she finds my involvement “creepy”, her family doesn’t seem to either, and we’re both very interested in sustainable mutual investment. Part of that for us is learning about each other, conditions and all, regardless of whose business it is. She has ownership of her condition, I don’t think or want my involvement in her management will/to change that.

And don’t get me wrong, I really appreciate your input. I think it’s really important to assess whether expectations are healthy and if a random internet stranger has the best intentions at heart. And yes, you’re right, we’re young. But I don’t think that needs to change how we approach learning about each other or how we involve ourselves in each other’s lives. We’re people who live for connection, and I’d much rather take extra time to build a complicated but powerful relationship that helps us both grow, potentially destined to break, than I would stepping back and dealing with our own problems alone.

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It appears that you honestly care for her, and she for you. The fact that she wants you involved is good. Go slow, don’t be like me, well it is a man thing, and try to fix it. Be her support and sounding board.

Learn what you can about type 1 DM. Read books Gary Scheiner’s, "Think Like A Pancreas" I would suggest the print and paper version rather than the eBook. That way she might see it and pick it up - ON HER OWN! Sorrry to shout.

Bring your concerns here. There are some members without diabetes but are caretakers of children with T1DM. Even though your loved one is not a child, the can be helpful.

Keep in mind there is no cure for any type of diabetes. There is continuing research that is promising, but you know the saying, wish in one hand and spit in the other, which one fills first?

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When my son reaches dating and marriage age, I only HOPE a future friend and partner will take this level of interest in his health and well being. Even just his friends in general…those who know what to look out for, as a protection mechanism for @Liam-M when they are out celebrating together or what have you. Friends look out for one another. I’d love them all to want to learn. Can’t look out for him if they don’t understand diabetes in general and what to watch out for, for his protection and well being.

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