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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