Difficult dillemna. You have done very well after a lifetime of successfully living with diabetes. You have already exceeded the capably of most caregivers, who ate poorly trained for even type 2 diabetics who are on oral agents. As more type 1 diabetics live into “ old age” because of both improved technology and knowledge about diabetes, your dilemna will become even more common. Tandem has the capability of sharing data with a patient’s endocrinologist and diabetes team. They may be able to provide daily monitering with contact with a caregiver to give Specific instructions. Fortunately, the tandem pump will lessen dangerous lows, especially at night. As s 72 year old who has had type 1 for about 38 years, I share your concern.
We care for my wife’s 93 year old grandmother who has T1D. I put her on loop with omnipod. I have found that lowering the ISF to about 15 or 16 (normal is about 65), the system keeps her in range most of the day without carb entries. Over 250 and lower than 85 is rare. A1C is right about 6.7. Correction range is 120. Single basal rate.
You may try lowering CF on your control IQ pump and eat without entering carbs. See what happens. Keep the basal on the lighter end.
If it’s reasonable, teach your wife to change the CGM, pump pieces and when to spot a bad infusion site. It’s better than you will get in a facility. Also, make notes about how to handle supply re-order and updating prescriptions annually. That’s probably harder than management.
No, no, no. Control-IQ does NOT prevent lows if the correction factor is too low. That seems like a terrible idea to me. Low suspension is the most critical thing of any automation system, at least in my personal opinion.
“Growing old is better than the alternative.”
I don’t know who said that.
@Timothy, maybe we should make our own town somewhere in Utah, lol.
I am thinking about a couple options. One is having a “roommate” someone who is in med school or nursing school. For very cheap rent, they could be my backup T1D mgt. I see pumps and CGM’s as far easier than MDI. The math is done, push a few buttons. After all, parents of children with T1D and children themselves learn it.
On the positive note, one of the benefits of the covid19 catastrophe is the use of CGM in ICU’s. Dexcom has provided CGM systems for the monitoring of bg of patients in those units with diabetes (it is the subpar D mgt that is a huge part of the poor outcomes). The idea was initially to reduce the in person contact with those patients and the consumption of PPE. I strongly believe that home health aides can learn our devices. And in terms of Medicare/Medicaid funding, once they realize that covering CGM and pumps results in better outcomes (and fewer hospitalizations which equal less expense) hopefully they will come around.
That sounds like an awesome option and I am not sure they even need to be in med school or nursing school, they just need to be well disciplined in what you need and smart enough for you to trust them to be you backup lifeline. Perhaps even a like-minded diabetic. If this makes sense, this forum could be an invaluable asset by having a a tab or other method for helping potential roommates find each other by having a roommate wanted/available by state.
What do you think?
One of the benefits of having a med/nursing student is that they would learn how to really help PWD’s!
No person including med/nursing staff have better knowledge of my diabetes than I do so I would much rather train an individual that does not have any pre-conceived ideas and is willing to learn and implement a plan that suits my needs rather than being stuck with what they may think is best for me.
It will still suspend. Control IQ is watching the BG trend. As soon as the trend slows or starts to drop, it will suspend. It’s not that dissimilar from Loop.
I would think running in sleep mode might be better. It will give insulin slower through temp basal rates and has a tighter range.
Don’t knock it until you try it and have some understanding of the algorithm!
Last 48 hours. Green is 70-180. Nothing over 250 and no low treatments.
So much of this! But I am starting to learn how very different some diabetics we’re. I Wisconsin chose a doctor with little knowledge of my diabetes, but willing to write scripts, because I get so angry with medical people that THINK they know more about my condition that the one living with it for more than 3 decades. I’m happy to have a two way conversation about things, but not to be spoken at or managed.
However, I’m starting to see that this isn’t the typical mindset. With more Covid-19 free time lately, I’ve been browsing the interwebs more I’m astounded by the number of people who know NOTHING about managing their diabetes, but rather just follow instructions and wait for their doctor to make adjustments. I’m not even talking about new diagnosises, but long-timers that are happy to be lemmings, rather than proactive.
I finally understand the minimum diabetes tech and regulation needs to be written to. And unfortunately, it’s not the level of care those of us proactive enough to follow the forms are looking for.
I have tried it. I lowered my correction factor based on the recommendations of others, and found it to be disasterous and highly dangerous. Repetitive lows so scary the meter and Dex both just read “LOW” and my husband was standing by with the glucogon in case I passed out. It wasn’t until I kept adjusting the correction factor closer to accurate, and finally landed on the correction factor I used before Control-IQ and Basal-IQ, that I finally got effective low prevention.
You might have found something that works the for her, and I’m guessing with minimal food/carb intake, but your recommendation is a frightening “one-size-fits-all” option. I’m honestly terrified for her. What if she has a treat that you DO bolus for? If you over-guess, it won’t suspend fast enough to prevent severe hypoglycemia, and maybe worse. Or even if someone or something mechanical has a brain fart… You’ve chosen to forego one of the biggest security mechanisms of the system.
If anything, I would challenge you’ve got the pattern backwards. I don’t expect you’ll change or heed my advice, since what you’re doing is working for you, but if you Increase her basals (maybe just in time segments around typical meal windows) and dial in the right correction factor, you’d see less rollercoaster and probably avoid the few out of range spikes. Tandem’s own medical advisors tell you to turn UP your correction factor if your line varies up and down a lot.
TIR is one measurement goal, but the new gold standards are actually glycemic variability index (GVI) and patient glycaemic status PGS. GVI translates to how flat your data line is, because newer research is showing that the swings up and down can lead to complications, more so than just average glucose PGS just multiples everything together (TIR X average glucose X GVI), so if you’re 100% in range that day, it zeros out your score, but the moment you touch a toe across the line, your PGS goes crazy. Of course,v that’s all a bit random depending on the range you set. If we’re striving for a non-diabetic level on control, then we should be measuring against an upper range limit of 140, not the ADA standards of 70-180.
Please note, I still think you’re doing an amazing job caring for your MIL. It’s a big responsibility and you’re doing so well at it. I just think your method of getting there is backwards. Accurate correction factor is the main tool Control-IQ uses to flatten the line.
I’m going to post my own personal experience. These screenshots are a little over a month old, taken while I was adjusting the correction factor. I do run sleep mode 24/7 and my in range limits are set at 70-160mg/dl (I’ll move onto the optimal 140 limit someday, but I’m afraid the ugly data would break my heart right now! LOL). The only thing that changed between the 90 day, 7 day, and 1 day statistics was that I gradually raised my correction factor from 35 to 46 (46 being my “true” value). I wish I had the 30 day screenshot to share from that experiment, but I don’t seem to have taken or saved it. You can still see a progression to better management using Control-IQ when using an accurate correction factor, though.
90 day data:
7 day data:
1 day old data when the screen shots were taken:
It would be great if you read my post and considered the context of the discussion. We are talking about losing the ability to manage yourself. Just eat and maybe a loved one can treat pending low. So, no bolusing for food.
If we are bolusing her food, we use her normal stats (ISF). Of course it would cause problems if CF/ISF was too strong and you were managing like normal.
With Loop, it actually doesn’t cause much of an issue, but that has to do with how loop tracks carb absorption. I don’t think Tandem has released any info on how they track meal progression.
She’s my grandmother in law and 93 with mild dementia. She can’t even remember what she ate if find out later that she did or if we want to go out without her. She is a picky eater (loves fried food, dairy, and carbs - minor amount of plants), gets distracted, and takes forever to take something for a low. It’s worse than a toddler. She had an A1C of 10 with massive lows and highs. She has no clue how insulin works, never used a CGM, and didn’t even remember to take her insulin many times. Her doctor had her on a T2 rhythm of super heavy doses of long acting.
It’s all experimentation. She has a slow metabolism, slow to eat, interstitial fluid takes a long time to update the CGM. Tandems algorithm has some nice smarts with its 30 minute look ahead vs loop. I imagine the CF wouldn’t need to be as dramatic as in Loop to pull off moderate results with no meal management as a caregiver.
My daughter is 7 and has similar stats to you.
Getting grandma those stats isn’t too hard if we are watching her all the time. Because of her previous A1C and other age related challenges, we don’t try to keep her in a non-diabetic range. What I am talking about is no carb entry, no bolusing. Hands off. With manageable results.
Basal accuracy is too precious to inflate around meals. It’s important that the system knows how much insulin is on board instead of adding insulin that isn’t really basal, but is active insulin. This idea works with dumb pumps, but it’s not an ideal approach with algorithms that are tracking IOB for its decision making.
I can flash stats, if you want. Pretty decent for a 7 year 6 going through her first basal change in a year. (what a pain) with a range of 70-150. Wedding and other parties this week too.
93 year old with all but 1 day with pretty much no carb entries or boluses and 3 lows caught.
I will note that ISF is only aggressive during the day.
I promise I’ve read every word you said, and still stand by my commentary. Like I said, I wouldn’t expect you to change your opinion or methodology. I’m advocating against others following what I think is dangerous advise relevant specifically to Control-IQ, not Loop, since you brought it up.
Have you tried a stronger CF with control IQ and no carb entry or boluses? Sleep mode and normal? I’d be interested to hear how it went. You didn’t directly say that’s what you tried. I inferred from your other comments you had CF aggressive while also managing with normal meal boluses.
How about the topic at hand… How do imagine managing as you age with the current tech?
The love given was because I highly appreciate your tone and civil disagreement!
No, but a little bit, kinda, sorta… I never had reason to think about if I couldn’t self-manage in the long-term before this thread. That’s why I find this all so interesting. While still on Basal-IQ, I had untreated inflammatory issues that made my insulin action painfully slow. It wasn’t realistic to pre-bolus an hour or more before meals, so I did build that into my basal profile, extended over several hours where I was likely to eat. It was enough to cover a moderate carb meal, but not entirely. Except, I actually reduced my basal rates later on to compensate, and still bolused in an attempt to be more accurate. It worked for me, but it looked like an absolute nightmare on paper and it’s difficult to explain. I couldn’t really on someone else to understand all that. Basal-IQ being only insulin suspension, the variables didn’t matter much. I’m on anti-inflammatories now, so have abandoned the need for crazy basal profiles.
I wish I knew more about Loop, but I was never able to have experience with it. My insurance doesn’t cover CGM supplies, so we didn’t decide it was a worthwhile investment until it integrated with my pump. I don’t know the pros and weaknesses of the system, but I’m guessing they’re different than the ones that come with Control-IQ, because your solution might work great on Loop, but it doesn’t jive with the strengths and weaknesses of Control-IQ as it stands right now.
Control-IQ is OKAY at keeping you inside a set target range (70-180 default, 140-160 exercise mode, and 110-120 sleep mode). How good it is is at keeping you in range is highly dependent on your own inputs and largely how good you are at managing without pump intervention. It’s why the tightest control window is reserved for when you’re supposed to be sleeping and having minimal inpact on it. Honestly, it’s pretty WEAK at bringing you down, once you’re already high. There’s a lot of safety mechanisms built into it that minimize it from over-delivering insulin, and consequently prevent it from bringing your glucose down in a timely manner. If you’re running in default mode where it can deliver correction boluses, it will only give you 60% of what it thinks you need. You’ll find a lot of discussion all over the interwebs if people trying to make it more aggressive at combating highs.
You’re best option is to try and prevent yourself from going high in the first place. What Control-IQ positively SHINES at, is low prevention by reducing basal and possibly suspending it altogether. It relies on correction factor to determine how to do that, though. So your plan of attack with the lowered correction factor, is basically cutting the Achilles tendon on Control-IQ, and relying on its weakest link to do the heavy lifting.
You’ve already mentioned that you don’t like the idea of screwing with basal rates, and I can understand that, but that is exactly what I would do if I needed Control-IQ to be closed loop. As far as I know, in a care home meals are a lot more regimented. They have to meet nutritional standards, so I’m guessing one could determine an average amount of carbs that might be eaten. I would increase basal for about three hours when meals are likely to be, and rely on the pump to suspend the unnecessary insulin. (My average dinner bolus is 5-7 units of insulin, for me that would be 55-77 grams of carb). I’m not afraid to be risky with my basal, and I would add 2.5 units to my basal for a 3 hour window. Yes, that sounds scary, but it’s really not in theory if you know the person will be eating it. And since Control-IQ shines at preventing lows, I trust it entirely to hold back the unnecessary insulin. It would of course be safer on a low-carb diet, but I’m taking about my personal dosages and I don’t restrict carbs, just try to eat balanced nutritious meals.
Of course, I already run higher than necessary basals. It comes with the caveat that you have to switch to a more accurate basal profile when the technology isn’t available, like during a sensor warmup. It’s how I like my system tweaked, but I understand it’s not for everyone. I can understand how many reading my comment here would scream “that’s dangerous to deliver such high basals!”, just as I bristled at the notion of turning down the correction factor so severely. With our current technology available, I don’t think there’s a perfect solution yet, so we have to take risks somewhere to bend the technology to our will. Personally, given Control-IQ’s strengths and weaknesses, I think the heightened basals have much less risk than the lowered correction factor.
From what I’ve seen of the world, probably not. Even if you get an archangel as your careperson when you sign up, the archangel may go to work someplace else a month later. But it doesn’t matter: We don’t have to choose among all the possibilities in a perfect world; all that we have to do is to choose the best among the possibilities realistically before us.
Thats a great idea, @artwoman and @CJJ14.
I think that you could pick up a cheap paramedic student. They will be easier to come by - any community college with an emergency medical system (EMS) program. They will desperately need experience on the resume in order to get work (EMTs, even more so).
Perhaps you could even find someone who is working, now, but seeking employment that is a little safer than working the street or a hospital.
Unfortunately not always. Not trying to be nasty or insulting. Long story but gist of it was I cared/managed care of a number of my older relatives and the worst scenario was Grandmother w/ Alzheimers, by the time she died she not only could not speak but also could no longer comprehend language. She was a very private person and it was horrible watching her get striped of any dignity. She got better care than most on that floor since I was there somewhere between 2-6 times a week but it still was where she had a pulse but not a life.
Sorry if this seems to harsh of a response.
Great question (sorry for the late reply) and I agree with what seems to be the general consensus of answers to the question. We live in CA and there is a state law that requires only a licensed medical professional be able to administer medication (that includes insulin from a pump as well as the administration of both pump and CGM) if care is being paid for. A family member or friend is not restricted by this 40 some odd year old legislation from administering/managing the pump/CGM as long as they are not being paid as a caregiver. (would not be at all surprised that some other legislative restriction or peril to the individual[s] managing the equipment exists)
At any rate, I am not aware of any special services available to those in assisted living facilities that would qualify a caregiver to be able to manage a patients diabetic condition using a pump + CGM or otherwise for that matter! It is not likely that a licensed physician or nurse, even though many facilities employ these professionals would be always available to administer a patients pump/CGM as needed. (at the very least for each meal time and snack) Even where not encumbered by this legislative restriction it is unlikely that personnel capable of understanding how to care for a T1D patient are an available option at most facilities.
K Hjalmar, it sure is a concern especially for those without family that could step in and manage. My hope is that you will continue to be able to manage your equipment and condition for as long as needed. Best of luck