When my son was dx'd with T1D, my wife and I heard that he should never live alone. I've since heard many a story about diabetics (mainly insulin dependent) who have had acute hypo and hyper incidents that could have been big trouble if roommates, coworkers, etc. did not come to the rescue. Does anyone know of actual office guidance or recommendations (any source) that focuses on this idea of not living alone? Thanks.
Hi SGrieco. Here is a TuD Group that might have some info for you: http://www.tudiabetes.org/group/living-alone-with-diabetes
I have lived alone with diabetes. I am always suspect when I hear absolute terminology like "never" (or "always" for that matter).
I have also lived with another person who had to call 911 when I had an acute hypo (pre-pumping).
At work, I always made sure my co-workers knew that I have T1D, along with the basics of low blood sugars. Fortunately, I never had to ask for assistance.
I did have a T1D co-worker who passed out at her desk. We had to call 911 and have her transported to the ER. She had never told anyone about her T1D.
I did a very quick search with the ADA and the JDRF, but did not come up with any sort of "guidance" document that addresses your question (but again, it was a very quick search).
For me, with my current technology of pump, meter and CGM, along with my experience, I am very confident that I could live alone with T1D if I had to.
Huh?
I'm wondering what the heck I could do other than live alone? I've done so now for several decades and I don't see that or my personality changing soon. I suppose if you have the option of living with someone without driving each other mad, then it might be a good thing. But not everyone has that option.
I did have a T1D co-worker who passed out at her desk. We had to call 911 and have her transported to the ER. She had never told anyone about her T1D.
Out of curiosity did see have any indication on her that she is T1D? Medialert or equivalent? Approximately how old was she? (Just curious.)
I tend not to mention it directly either, but then I'm seldom in a work setting these days. And I do have a wrist RoadID which mentions that I'm T1D. (I was told "afterwards" that having this type of ID saved my life in an ER about 35 years ago.)
-iJohn
T1 LADA ~1978; 1st pump: Minimed 507 (~1997); currently: Paradigm 723 (2013) + CGM (2014)
I've lived alone since diagnosis almost 8 years ago. My co-workers know to check up on me if I don't show up for work one day. Otherwise, that's totally ridiculous to say Type 1's should "never live alone". It's actually quite offensive in my book.
Also, I've never needed assistance since diagnosis. Never. Never come close to it, either. If one manages his- or herself well, then one should never need to have someone else around to call 911.
I lived alone before for a while in and after college. When I live with people I tell them warning signs like confusion dizziness etc. so they can know if I need help. I’ve also had dangerous low’s before but usually not at home. I don’t know any sources that suggest people never live alone. Many people are overly fearful of diabetes more over complications that can occur but with the emerging technologies like CGMs and pumps we have developed way better technology to cope with diabetes.
I have before woken up with a low blood sugar but keep Gatorade ,SpiceDrops, Glucose Marshmallows nearby and usually set alarms or at least have my meter beep when it’s time to test. Other things like cell phones can have reminders set for when to test.
I’ve always rebounded from low blood sugars and have signed waivers denying consent to hospitalization. I once was charged $60 for testing my own blood sugar because I used the Meter the EMTs had. I urge people to at least live with others and definitely tell co-workers or even write up a how to sheet for co-workers and speak openly about medical issues. High Blood sugar is way less likely to kill you unless untreated for days.
I also think never and can’t terms against living alone with type1 are offensive too.
Most people are curious about diabetes when they meet someone with it. There will be stupid questions about misinformation people have heard but they can easily be rectified by sharing the truthful answers.
I thank you for asking your question. I understand you have a lot of worry but many videos I’ve seen online by parents with young diabetics are overly dramatic. They can will never etc. most of the time they are raising funds for Diabetes Walks etc. I’d recommend getting an RX for high quantity of test strips 8-10/mo. etc to save on Costs and Allow testing as much as possible especially when changing jobs schedules or living locations.
Just my 7¢
Mike
To take this in a slightly different direction ...
I think most of us who live with T1D, especially those of us who live alone & manage by ourselves, would agree that how one does on their own likely depends more on the person than the diabetes.
If you follow the discussion forums regularly it doesn't take long to bump up against one of the "s/he refuses to test BG!" or "to take insulin regularly!" or "to eat/drink sensibly!" horror stories. If a person has any of those problems, all that ensuring they are not living alone will do is give them an audience for their drama.
If a person is interested in taking care of themselves then they will do so, even if living alone.
Generalizing is always a bad idea with this disease. But while doctors are rightfully enough terrified of hypoglycemia, you are more likely to die from a hypo in a TV drama then in day to day diabetic life. Could it happen? Of course! But you could also die in an auto accident. I'm not sure which is more likely.
It probably depends on a combination of many different factors such as how much "excess" insulin is in their body, how sensitive that person is to insulin, how much glycogen is stored in their liver, and just how otherwise healthy they are.
-iJohn
T1 LADA ~1978; 1st pump: Minimed 507 (~1997); currently: Paradigm 723 (2013) + CGM (2014)
Living with another is a good safety tactic but does not completely mitigiate the risk most people live with. Even though you live with another, it’s likely that you don’t spend 24/7 with them. People live busy lives and even couples spend appreciable amount of time apart. Even if you have a severve hypo when with people, they may not act appropriately due to ignorance and fear.
I’ve lived with T1D for 31 years now, five with someone else and 26 alone. I’ve experienced severe hypos when with someone and alone. I don’t think either circumstance was determinative in my survival.
I’ve adopted tactics that minimize the liklihood of a severe hypo. First of all, I don’t take industrial size doses of insulin because I limit carbohydrates to a small amount. Small insulin doses mean small mistakes. Insulin dosing mismatches with food and exercise are part and parcel with T1D; your mistakes can be big or small. I choose to keep mine small.
I test a lot - 14/times per day on average. I also wear a continuous glucose monitor (CGM). These two devices keep me aware of my actual blood glucose levels and their current trend. I use an insulin pump and am aware of how much active insulin is in my system but not yet working. The pump keeps track of that.
I don’t think that one can safely turn your back on diabetes for extended periods wihtout compromising your safety. It’s such an ingrained habit, I don’t find it burdensome. If I was ever relieved of this burden, I would feel a load removed.
Finally, five years ago I teamed up with a hypoglycemia alert dog that can smell when my glucose is approaching a low level. He has saved my bacon more than once. Plus his attention, companioship, and loyalty are a huge emotional benefit and antidote to depression.
I do not and would not give a blanket recommendation that an adult T1D must live with soemone. Many of us find that position as an affront to our right to the benefits of an autonomous adult. I find nothing offensive, however, with adult T1Ds that choose to live with another for any reason.
She wore a necklace, but I also found a vial of insulin in her desk drawer. She had her head down on the desk like she was sleeping. but she was essentially non-responsive at first. At the time, I think she was late 40s, early 50s?
Thanks for the comments and suggestions. My interest in this topic is partly personal - as our family thinks about my son's future away from home. I am also curious for more academic reasons. So I called the Joslin center in Mass to see if they had any semi-formal or formal guidance or recommendations for living alone with diabetes. It seems they do not, but I was curious that the person I talked to suggested that a person with T1D living alone might consider not be too tight with their diabetes management. Another example of a suggestion that doesn't seem to have any official basis (like research findings or data on causes of acute complications leading to hospital admissions). I'll keep looking.
I was diagnosed in 1962 at 10. Mom and reluctantly,Dad--they knew I needed to be independent. That was pivotal for me. I finished college--out of town--moved out west, got a job and at 21 moved to Italy. FREAKED me folks, but they let me.
A lot of T1 is being alone. I have a wonderful spouse who suffers with me and watches over me. But that has not always been the case. I am proudly married to an Army Vet and was an Army wife, so there were separations, children, medical and family crisis handled by me. Only me.
I would encourage you to let go. He needs to find a path and understand how to take care of himself. You need to let him do that.
I have had T1 for 53 years, and have only MY FOLKS and the determination they allowed me, to THANK for that.
I'm fairly new to the T1D life since I was diagnosed at 60. Have two years under my belt so still a newbie, all things considered. What has worked for me is to use ALL of the available tech whether FDA/big pharma approved or open-source community build/supported front line innovations, that the big pharmaceutical CEO's call cowboy hackers since they did not get there first/can't charge big time since it open source. I have my numbers on my wrist 24/7 by using a dexcom CGM and Nightscout along with a pebble watch.
Being able to see the minute to minute changes in BG has allowed me to change/adjust/modify what I do with all my meals vs time of day vs types of carbs vs portion size so I can tweak my basal and bolus/I:C ratios to attain my desired range.
Adding in the skills I learned from Steven Ponder/Sugar Surfing/The Power Within has been vital in allowing me to stay between the lines (70-130) I have chosen with out going low or high.
My current A1C is 5.2 with less than 3% lows. Just known it can be do be! But it does need attention to detail.
As to deliberately choosing looser control due to the fact that I live alone, that has never been true for me. Living well with diabetes means dancing at danger's edge. I don't and will not soften my game for that kind of strategy.
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I am the adult in my house with 2 small children dependent on me. I use insulin.
I think this is a generalization and refers to people who have highly variable blood sugars.
I think the important thing is to have tight control. I also have some rules that make it safer - I don't go to bed with significant amounts of short acting insulin on board (lows from long acting insulin if they do occur are slow and easier to catch).
I haven't had a low that needed treatment in more than a year (and except for 1 incident in my very early days of diabetes 7 years ago, I have always been able to self treat). My latest Hba1c is 5.0.
I think it very much depends on the individual and how he manages his diabetes.....
A variation to my first post question: Has anyone seen "living alone" listed (formally or officially from some source) as a risk factor for acute hypos or hypers? I'm not advocating for any position on this topic, I'm just curious about the medical thinking behind this idea.
You may not realize this but many T1Ds don't put much stock in what the "medical thinkers" think about managing T1D. The medical providers (with a few exceptions) do not live 24/7/365 with diabetes. As a result their positions are skewed toward playing it safe.
They are hypo-phobic to a fault. They'd easily be happy with your A1c being 7% instead of a closer to normal 5.5%. They practice legally defensive medicine at the expense of their patients' health.
That being said, I still see an endo every three months and listen to her counsel with due respect. When it comes to quality of life and day to day management issues, however, I will often smile and nod and move on. I've spent over 250,000 hours living with this disease; I'm not ready to listen to someone just because they have a medical credential.
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Found an answer to my own question. Living alone has been associated with death in young people with T1D:
http://care.diabetesjournals.org/content/28/7/1618.short
This makes sense, logically. Thankfully there are lots of things that can be done so young adults with T1D can live independently.
In the conclusion to that study, living alone is cited along with other criteria: Here's the quote:
The present study adds several further factors with which to identify patients with diabetes at high risk of sudden death, and a combination of these findings and previous reports would suggest that these are as follows: young and of the male sex, a low socio-economic background, living alone, a history of drug abuse, and past psychiatric problems.
I interpret that living alone and many other social criteria contribute to risk of dying a sudden death with diabetes.
I was always told that I should never live alone as well. As it turns out, I haven't lived alone for much of my adult life, but I never really had a problem when I did. I always assumed it was a hold over from when I was taking NPH and was going low constantly/unpredictably. Once I was put on lantus/levemir (and for the last two years, the pump) I really stopped worrying about dying in the night/in the shower/any other time that I'd be at risk for not being able to take care of myself.
I live alone, and have done so for the past 4 to 5 years. I've never needed acute help due to lows since my diagnosis 11 years ago. I have been helped when I was younger, but only because my mom was close by - it wasn't really a dangerous situation. My BG was around 33 mg/dl. I could have stumbled to the kitchen myself, but I was more comfortable lying down and eating everything I could get my hands on... Lol.
I've also never been told I wasn't supposed to live alone. In the beginning my mom called every day to check up on me, but now she has relaxed, and I've never had any problems.