FUDiabetes

CGM alarms and partners - what's your experience?


#21

Totally in agreement.

I am typically on alarm duty at night while my wife is on morning duty. We often have 4-5 alarms a night, and, in such periods, my wife sleeps in another room. Important since she is the one getting up at 6:30am :slight_smile:


#22

I was awakened by middle-of-the-night pager beeps and phone calls during all the years my husband was an ICU physician…so if he wakes up to my CGM alerts, well, it’s just payback time! :joy_cat:

Seriously though, he’s woken me up a couple of times when I slept through the urgent low alarm and I am very grateful! :pray:


#23

My bg forced a chat about it this morning because my basal needs suddenly dropped over the last couple of days. This is due to a number of things.

We did a road trip last week that also happened to coincide with Thanksgiving and the end of my monthly cycle. I decided to ride the high basal rate throughout the trip (despite my period being over), and that decision turned out to be very wise. My bg was nearly perfect Wednesday - Sunday despite two of those days including 9 hours of driving and the other days including lots of beer and food.

Now I’m back to reality though, and I’ve been decreasing my rate, but not enough apparently. The workout Tuesday night knocked my basal needs down further. A series of low alarms between 3-6 am this morning resulted in my drinking two gatorades. I still needed an apple later in the morning. I drastically reduced my basal dose this morning in an attempt to avoid a repeat tonight, but I’ll probably bump tomorrow’s dose up a bit (thanks @cardamom for sharing your strategies!).

Anyway, I apologized for all the alarms this morning. He was clearly a bit sleep deprived, but stated that they were important. Then he insisted that I not turn them off at his expense (which isn’t exactly what I would do, but I might widen the range so that they don’t sound). When I mentioned that I could sleep in the other room when I have bad nights like that, he said that he didn’t want that. I may push for that if I expect repeat alarms one night, but it sounded like he was okay with occasional alarms and understood why they were important.

Sometimes explaining stuff like this can be challenging. It’s important that the super low alarms go off, but high alarms are subjective and could be adjusted if I wanted. That judgement call can be difficult to explain to someone who isn’t experiencing the disease, and I’ve honestly never really tried explaining things like that. I generally try to give very simple answers to any questions I receive from others. Sometimes I find that difficult with the questions he asks though. Perhaps as his understanding grows over time, it will get easier to explain.

Thanks to everyone for sharing all of your experiences :slight_smile:


#24

Sounds like the conversation went well. I am happy that worked out for you.

I don’t know if this advice applies, but when we deem a night’s sleep really important, we turn off all of the alarms except of course the urgent low. yes, you might wake up high, but some nights sleep is the most important thing.


#25

@Allison’s point is a good one - having the daytime threshold set to alarm at 130 is a nightmare at night (LOL! Inadvertent pun!)

Anyhow, as a partner I really think that Dexcom alarm thing isn’t as big of a frustration as it could be. Certainly not a dealbreaker! And just like @ClaudnDaye said, I am honored to be able to help my partner maintain good health. I really value that part of our relationship. We help one another in the health department.

That being said, certainly sometimes the alarms can be annoying. And figuring out where to set them so they don’t drive everybody crazy is really helpful. We seem to cycle through periods of life where it’s an issue at night and where it’s not an issue. Remembering to have patience and knowing it’s a phase is important for me.

I will note that the vibrating alarms do not work for either EH or I. We will just sleep right through those generally. And maybe the biggest annoyance is having all of EH’s diabetes gear on his nightstand. If, for instance, like right now, his phone alarms saying he’s having a low, but it’s a pressure low, I can’t reach it to turn it off without getting out of bed. And it’s cold and I’m NOT getting out of bed!! So I have to wake him up completely to have him turn it off. In an ideal situation we’d have a bed with some sort of headboard where we could both reach the supplies. Mostly because I sleep worse than he does and I would just deal with the night shift, so to speak.

Also, not that you’re asking for relationship advice, but because it occurred to me this might be a good place to dispense it…

We have been friends for 25 years, together as a couple for 18 years, and he’s had diabetes for 13. Finally one day we realized if he’s low or really high he often won’t be acting “normal” or necessarily remember the specifics of a conversation later. I don’t know if this is true for anyone else here. But I think if I had been told that would be part of diabetes, it would’ve saved a lot of arguments and hurt feelings on my part along the way.

Congratulations on your new situation and best wishes. I am really excited for you! May life shower you with plenty of Ikea furniture and lots of sleep.


#26

This is the certainly most original blessing I have ever read :slight_smile:


#27

Thanks so much for your in-depth reply @TravelingOn. I really value your perspective as a partner of a person with diabetes. The support you’ve shown EH has always been so impressive to me.

This is helpful to read because I do anticipate that we’ll go through similar periods of time in our relationship. I also expect that I’ll be changing the limit on the high alarm depending on how stressful/sleep-depriving life is at certain points in time. I may need to keep in mind your advice to recognize these times as phases. Coping can be so much easier when you have that perspective. Hopefully this won’t be a frequent challenge though!

Well, if you’re an IKEA fan, then this is the headboard for you! The drawers in the bed frame are awesome too. Perfect for living in a city! https://www.ikea.com/us/en/catalog/products/70228716/

Yes, I act weird when I’m low too, and I’ve mentioned it briefly to him a couple of times. He’s also noticed it a few times as well. Highs are less noticeable, but I tend to get a little irritable. I should probably mention that to him as well as that might help us table any difficult conversations for better times. Thanks for bringing it up.

I’m always happy to hear any advice you have to offer. You have a unique and very valuable perspective on FUD. Thanks for being here :smiley:


#28

Holy crap! That IS the perfect headboard. What a bummer, I was totally at IKEA last week! I actually remarked to Eric while driving away “I remember a time when I thought we would eventually grow up and settle down and not be going to IKEA for all of our furniture. That time hasn’t come yet!“ and we had a really good laugh. It kinda has come, we own lots of non-IKEA stuff now, but that place does offer lots of solutions to problems. :rofl:

Now that I have looked at the headboard you sent though, I think I might be able to use a thin shelf I just bought at IKEA and screw it to the back of our existing bed/headboard. (“Sorry, Mom, I used your Christmas gift for myself.”) (Also, don’t worry, the bed was a bargain and won’t be ruined by my additions. Ha!)

Feel free to blame me! You can totally bring it up and not have to point at yourself – just mention you heard it on FUD. Ha!

Aaaaw! Thanks! That made my day!!


#29

One more thing…

Help your partner succeed at helping you. Buy a spare testing kit and let him keep it by the bed on his side. :slight_smile: Good housewarming gift? Oh, and have him help you test before you’re low. :smile:

Why didn’t I think of that before RIGHT now?!? (I have @Nickyghaleb and @T1Allison and @Michel and @Eric to thank for the idea of multiple testing kits I think!)


#30

That’s interesting—I honestly can’t imagine wanting my partner to do that. I think my current partner would be willing to and capable of it, but I just don’t really want someone else testing me. I realize people are so different on that, but the idea feels actively weird/uncomfortable to me, much like I hate it if a medical professional insists on pricking my finger themselves when I can do it so much better. However, my partner does do things like make sure my smarties stash is well stocked and tends to keep some in her bag and/or pocket as well.

I was really pleased to realize that at some point Dex changed their urgent low repeat cycle from 15 min to 30 min—back when it was 15, it was super annoying, because I would treat a low, and it might not be back up past threshold in 15 min, it would go off again, and wake both of us up, and the only option was to plug in headphones to silence it, but I didn’t want to silence alarms entirely for the rest of the night or to silence my morning alarm… 30 min is usually enough time, although I might lengthen it a bit more especially when I’m sure I’ve treated adequately (or more than adequately) and am just waiting for it to kick in. I still find it so annoying that Dex doesn’t let you adjust or silence the severe low alert, since it’s certainly not safer to have such a rigid setup that at times my best option is to turn off my Dex or force my phone into silence via headphones, which is what ends up happening.


#31

Truth be told, I don’t really like doing it. But I want to have a testing kit next to my bed side so I don’t ever have to get up again when EH can’t find his actual testing kit. :rofl:

And really the most useful time is pre CGM, when we would be on long road trips. He usually drives, and I have tested his blood sugar while he was driving and that is handy. But having a kit by my bed wouldn’t really help at that point! :wink:

I think many of the things I tend to do in regards to EH’s diabetes are actually there to make my life nicer. Which is incredibly selfish, but true. I worry less if I know we have a source of sugar. I worry less if I know he could do a fingerstick and identify what his blood sugar actually is. I worry less if we have a supply of insulin in the fridge. And the suitcase. And the bag. And a spare pod. Even though we are really often flying by the seat of our pants, I have developed some failsafes over the years. He’d be fine with one testing kit and not a lot of backup supplies. But I have spent enough vacation waiting in line at Cosco pharmacy to get missing D prescriptions that I never need to do that again. :joy:


#32

That all makes sense!

I think my own perspective might also be really different if I hadn’t had many years of managing diabetes as a relatively independent teen and then as an adult living alone (which was most of my adult life, until recently). When I was a kid, learning how to function without my parents direct help was the key to independence, and then afterward, it’s just how I functioned. It would feel super weird to bring someone very intimately into that (kind of like if my partner asked to brush my teeth or something); however, I think it might be different if I developed diabetes as an adult while cohabitating and/or if I grew up with more parental involvement throughout my teenage years.


#33

That also makes total sense to me :slight_smile:


#34

My son won’t let anyone do anything for him if he can help it. Even when he is very sick. He wants to be in control at all times. I think my wife or I have done a blood stick while he is asleep two or three times in almost 3 years on the diabetes playground.

So I don’t think your feelings are necessarily wrong.

Might be nice to have an extra kit to hand over if you are confused though.


#35

It’s funny how different we all are. I have been married for almost 30 years and I don’t think my husband has ever woken up when I am low during the night. He sleeps like a log and doesn’t wake up no matter how much noise I (or my Dexcom alarms) make. He has never checked my BG for me, mostly because he has never had to, but he will get me juice if I ask him to! He’s the best husband and he would do anything for me, but I guess that I am so independent when it comes to T1D that I’ve never really asked much of him in that area. I should probably start teaching him stuff so that he can take care of me in my old age :stuck_out_tongue_closed_eyes:


#36

My gut reaction to your post was similar to @cardamom, @Lisa, and @Chris’s son. Maybe I’d be okay with him testing my blood sugar one day, but right now, it feels like I’d be asking him to be responsible for my health. I haven’t had someone else test me (aside from the occasional insistent nurse) since I was probably 10.

I feel like @cardamom was literally saying the exact words I was thinking:

It’s good to know what makes your life easier though @TravelingOn. I think I’ll let my partner know the key code to my phone so that he can see my cgm value if needed. Since the phone will be between us on that fabulous headboard :wink: , that could be helpful.


#37

Same here, but still, stuff happens. I’ve taught my partner how to do things, just in case. I would not have been able to change my pod or insert a sensor when I had frozen shoulder (luckily I didn’t use either when I was afflicted). I got very ill once when we were travelling, and anti-psychotics I was given to stop vomiting knocked me out for four days, but he was able to keep an eye on my blood sugars. What if my arm is ever in a cast? I don’t expect him to do these things on a regular basis, or even more than once, but it’s reassuring – for both of us – to know he can either assist me or do it for me if I’m incapable.


#38

@Katers87 Congrats! Your partner sounds like a nice, caring guy who is willing to help out if needed or if you choose to let him in. By no means am I saying that in a critical way - I have my own “issues” when it comes to omy own self care.

I was raised with a loving mindset of “you can do it, so give it a try on your own first”. Ironically, I notice a delicate balance between self sufficiency and asking my family for help. I know “Help” can waiver between loving support on one end or over dependence on the other (it must be my personality that worries about the latter :smirk:, as it relates to D or other issues). Like others have shared, what works for me is talking about this issue openly. I’m thinking that the fact I was diagnosed 3 years ago (many, many years into our relationship) impacts how we navigate various things related to Diabetes (we had weathered many other things by the time I was diagnosed) and for him, all he was is to help if needed. All the best to you both!

@Lisa My husband and I have also been married almost 30 years (our 30th anniversary will be 6/3/19) and great friends for almost 40 years. :sunglasses: I’m also very independent and am grateful to have a very supportive, caring and D aware husband!


#39

You’re welcome, @TravelingOn. :grin:

So I’m reading this thread, enjoying hearing what everyone’s partners do and do not do for them, and I just have to pitch in what my own partner did just the other day (because it fits under CGM and partners??) Anyway, no response necessary— I’m just kind of venting and… venting.

Got my Dexcom. My mom was practically kicking down the door trying to get in so we could set her up as a follower. She really was very excited to be able to keep an eye on me, and as much as I kid with her, I’m okay with it, too. So after a couple of days I asked my husband if he’d like to be a follower… and he politely declines. As in he said, “I politely decline.”

That was our last conversation about it. Anyway, we really are a happily married couple and are coming up on our 21st anniversary. He hasn’t always handled my medical stuff in the best way, and I’ve always thought he might not like the idea of my being “sick”. I just don’t know if that’s a good enough reason to decline knowing how I’m doing. The good news is that my mom will do enough monitoring to cover for them both. :slightly_smiling_face:

There will be more conversations. I don’t do “silent treatments” particularly well. :grin:


#40

It’s funny because my husband wanted to be a follower, and he likes to show random people how cool it is that he can see my BGs on his phone, yet he does not hear or react to any of my alerts. Very occasionally if he gets an urgent low alert he’ll call me to make sure I am ok, but mostly he knows that I am handling it. I had T1D when we got married 29 years ago and I only got a Dexcom 4 years ago, so he’s used to me doing my own thing.