Parents Mental Well-being

Hello all. As many of you know, my daughter just started her Omnipod about 3 weeks ago. My wife and I have been doing the midnight and 3am wake up to check in on her. She also has the dexcom chm and we have had a few notifications where she was low. She got down to 2.6 mmol/L before she went back up after a couple of dex candies. Since then we have been sleeping on her teundle bed listening for that alarm. We are paranoid. She is doing well with the pump and we are determining a few trends. The point I am trying to get at is my wife and I are exhausted and stressed out to the nines. What do some of you do to help cope with all this? We have had a lot of positives but right now we feel more on the defeated/over tired side. I try to take the brunt of it all because I hate seeing my wife as tired as she has been. Cheers all.

2 Likes

It is overwhelming and exhausting in the beginning. It will get easier and less stressful. One suggestion to make overnight easier is to get connected with the dexcom app on your phones, which would mean she would have a phone near her bed and would share her info with you. You can also keep the receiver on for extra insurance for alarms. You can set alarms on your phones to alert you for lows. We set ours for 4.3 to give us a bit of time to treat. I can’t tell you how much better I feel knowing what her numbers are all day and night (and my DD is 16!).

1 Like

Gosh golly, I never thought I’d be giving advice on this issue as this is something I struggled with for a long time. How old is she?

It doesn’t take much to get rattled and lose confidence. You have to gain that back. Experiences are different, but I found pumping to increase our control, but also result in more variability in bgs. I had to learn the specifics of different types of foos and how Caleb’s blood sugar reacted to them overnight. Activity also plays a part in his overnight numbers.

Are you able to notice any trends to help you build confidence in decision making?

1 Like

Thanks Sprocket1. We have the app on our phones already. It is amazing. We only sleep next to her bed because it takes less effort and it is easy to bolus her or give a Dex tab.

I’m a type 1 myself and my BG’s were so unstable when I was a child that I had to sleep in my moms bed so she could wake up when I would start shaking ( my BG’s would drop so suddenly we couldn’t catch then in time). It is a lot easier nowadays because of CGM’s and better insulin’s but one of the best things from my own experience was learning to wake up when there is an issue. My own health improved so much after i figured this out and I’m sure my mom started getting a full nights sleep.
Maybe you can set her CGM at night to wake her before she is actually low like in the 70’s (mg/dl) so she is cognizant enough to take care of herself ( I’m assuming she not 5 or something). We diabetics tend to grow up pretty quickly because even if our parents are doing most of the work we experience what happens when something goes wonky and we learn how to avoid it.

Hi Lorraine. We are just beginning to see food trends and activities. Out nurse tonight told us to start mapping everything out. We are gonna start extending her bolus with pizza and starches. She is 7 years old and very sensitive to insulin.

Spreadsheets, graphs, charts - I had it all. Caleb was four when he started pumping. He’s now 15. It’s different now that he’s bigger and not as sensitive. When he started pumping he was using less than 2 units a day.

To this day, though, I will keep notes on complicated foods - pizza, Chinese, pasta, etc, and refer back to them to remind me how to dose. We use extended bolus’ and temp basals all the time as well.

I still don’t sleep through the night, but what’s changed is that I don’t usually set alarms to wake up and I don’t always get out of bed. I usually wake up naturally at about 1 or 2, look at dexcom and only get up if corrective action is needed.

lol

Ditto.

Okay. Totally understandable. I would also say to not strive for perfection overnight. If it means she runs a touch higher than daytime and it means a better sleep for everyone, I think it’s a good compromise until everything feels more comfortable.

2 Likes

I use a daily diary to help track Kate’s levels, insulin, food and activities. I find it very helpful not only in recording to see trends and anticipating similar scenarios, but also as a a time of communicating with Kate about her day, her feelings and where she is at.

I have been checking her every night at around two, and it is utterly exhausting!!. I guess there is a worldwide club of T1 parents doing the 2am shifts.

1 Like

OMG, that sounds terrible.

Maybe if you put the Dex into an empty glass (as someone else suggested on a different post), it would make a lot more noise and wake you up easier. Maybe, then, your daughter could just sleep on a cot your room and you don’t have to get up.

Could you two alternate taking some sick time at work or just decrease your work schedule a little to make space for all the changes? Could one of you take a different shift so that they are just naturally up at night and sleeping during the day for a while? Could you hire a young nursing student to come stay overnight and do some cleaning for your wife and do some homework and watch the numbers, just to decrease the burden of care?

I can really relate to you. I don’t have a small child but I do have type 1 diabetes and I know it’s a full-time job just trying to keep it under control. I have no intention of promoting a book I wrote for small children (and their parents) to give them hope that they can live a normal life - just with a few adjustments. But if you’ll check Amazon you’ll find lots of good books that’ll give you some hope.

Big hug to all you parents out there dealing with this !! I can only imagine how difficult it is - I was diagnosed in my early 20s so I don’t know the burden of being or caring for a small child with D. So in case no one has told you, you rock and you are awesomeness personified!!!

4 Likes

I was dxd in 1971 at the age of 3. There were no devices. The only time my parents or I did anything overnight is if I went hypo. I am still the same now. I like to wake up with a reading below 9 but I don’t fuss if it is higher. I just take a correction and then get on with my day.
Give yourself a break, ignore the night time readings unless they are dangerously low. You can watch for patterns and make adjustments but give yourself time to rest.
I have been type 1 more than 45 years. I eat well, keep active and I have minimal side effects. I watch my diabetes very closely during the day but I let myself rest when I go to bed.

4 Likes

When my daughter started pumping I was warned by other parents that it’s almost like being dxd all over again. I found that to be very true. After all, it’s hard enough to get used to adjusting & giving injections. Just when it feels somewhat comfortable you’re forced to trust a machine to dose the insulin, & the settings at the beginning are rarely spot on. It’s frightening. I spent more nights than I care to remember trying to sleep in a bean bag chair in my daughter’s room. I’m an older mom. It was misery for me.

I appreciated long-time T1s assuring me they weren’t tested overnight as kids & they survived, but they also weren’t using the rapid acting insulins we use. That was always in the back of my mind, & still is. There’s a bit of controversy over whether or not we actually need to test so much overnight. In our house, I own(ed) the night. It’s the only time I have any real control over BG, without food & activity. I believe the smooth nights help lead to smoother days. Even using the CGM for 8+ years, we still night check, although not as often. I’m sure that will be true until she moves away to college next fall.

Just a few thoughts.
My husband stays up later, so he has always taken the 10-12pm check. I get up earlier, so I check at 4:30. This has allowed us to both get a bit more sleep.

If you’re not using the Share apps with Dex, a baby monitor works pretty well. We used one until my daughter was about 14. That’s when she decided she liked sleeping with music. slight_smile:

It will be easier when you get the basals set correctly, & you’re more comfortable with trusting the pump. Give it a couple of weeks & you should be able to relax a bit.

3 Likes

Totally agree.

1 Like

Hello! I feel bad for you as that is a terrible way to start the day. A dietitian will tell you that proteins last the longest at night time and can avoid some of those Lows. Is it usually around 3 AM? And yes, how old is she? Believe me we grow up very fast having diabetes. Does the CGM wake her up? You have got to get more rest! Let us know.

1 Like

I am a T1 so I may not be the best to give advice to parents of a young T1 but you mention extending the boluses to pizza and starches. I would seriously consider if going that route is a good idea. As a t1d of 35 years I can tell you that balancing carbs and insulin is a losing game that you will never conquer. I went low carb last year and it has been an absolute game changer for me. It is no panacea but it has lessened the load on my shoulders to a degree I didn’t think possible. Before you start feeding her excessive amounts of carbs - the t1d Kryptonite - have a look at this video https://www.dietdoctor.com/member/presentations/dikeman

1 Like

I understand some people are strong proponents of low carb.
As a parent, I feel it is critical to have balance.

With everything else going on, I would not consider it a proper choice for our household to restrict my child’s dietary habits.

We also do extended bolus for Pizza, pasta and a variety of other foods.

4 Likes

Eliminating carbohydrates from one’s diet would change and ease the process of managing diabetes. I don’t consider balancing carbs and insulin a losing game that cannot be conquered. It takes effort, but we’ve been doing it for years. Caleb eats carbs and we don’t restrict them; I would not consider them excessive.

2 Likes