Helping a parent with T1D

My mom has had T1D for about 30 years. She uses a CGM and pump which have been very helpful for her. I am reaching out because I want to understand more about how I can help her deal with changes in her symptoms over time. She has recently been experiencing hypoglycemia unawareness, with multiple lows in a row. She has also recently lost some weight and perhaps her doses need to be adjusted. Has this happened to anyone else, and how did you handle this? I want to be able to give her some peace of mind that she isn’t alone. Thanks!

Hi @kewells and welcome to the forum. It sounds like you’ve hit the nail on the head: changes in weight can cause changes in insulin needs. The challenge of having diabetes over a long time (61 years for me) is that you can get so used to doing things a certain way, you might not consider the possibility that some changes may be in order. If your mom is the type of person who invites input you could suggest that she look into changing her rates. If not, you could pose it as a question - something along the lines of “Mom, you’ve been having a lot of lows since you lost weight. Does that mean you need to change your doses?”
Nice to have you here and looking forward to your contributions.

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@kewells Welcome Karin to the JDRF TypeOneNation Community Forum! This forum is a wonderful place to connect with people affected by Autoimmune diabetes and learn from the experiences of others. Like me, most of the Members offering suggestions and tips are not practicing medical professionals.

Over time, our needs for insulin shift, sometimes by very little amounts and at other times by significant amount of insulin. And, as a general rule, the more body weight we carry the more insulin we need to infuse/inject.
Many people who have been using insulin for as long as your mother have learned how to make adjustments in doses for meals and background needs; yes, it takes time and patience. You said that your mother uses both a CGM and a pump. All pumps and all CGM have software that can be used to review both CGM values and insulin isage/needs.
If you share the names of the devices your mother uses, it is probab;e someone here can give you a lead to how to use the software effectively. I currently use a Tandem t-Slim x2 pump and Dexcom G7 CGM and have had experience using the related software. I’ve previously have used other CGM and MiniMed / Medtronic software.

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Thank you for your response! When you say that you get used to doing things a certain way, do you ever feel that having to make changes somehow means you “failed” at management? I don’t see it that way, but I can tell when she feels defeated by the disease. Hopefully that makes sense.

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Thank you! I would have to ask her what the specific pump and CGM she uses are, as I can’t remember off the top of my head. When you look at your own data using the software, do you then make adjustments on your own or contact your endocrinologist?

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Karin, I make my own adjustments to Insulin/Carbohydrate ratios [I:Cr] and timed basal rates, and then share my adjusted pump settings with the endocrinologist at my next visit. I watch what is happening and make changes only when I see a particular pattern forming that needs my action. The CGM is the most wonderful “tool” invented for diabetes management I’ve seen during my seven decades living with diabetes.

If your mom is agreeable to you having real-time viewing, you can ask her to share - Dexcom calls its sharing feature Dexcom Follow; it doesn’t allow you to make changes but lets you see what is happening with her readings with about a five-minute delay. What I’ve achieved by watching my CGM values, and making changes, but also what I call “prophylactic action” is avoid almost all LOWS during the last few years. I have set my low threshold to sound when I’m expected to go below 80 mg/dl so that I can take remedial action; such as, I Know how much correction a glucose 4 gm tablet will increase my Body Glucors Level [BGL]. Correct, a lot of trial-n-error over the years - and finally got it to work most of the time.

Happy to share tips that have worked for me.

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With training and experience people often make changes on their own, but some prefer doctors’s recommendation.
In case you’re wondering - I’ve learned the hard way that small changes can make a big difference: when I first started pumping about 30 years ago I was excited to learn that we could make our own adjustments. So when I was having issues with highs I decided to try it - and increased my basal rate by a full unit :exclamation:- which sent me plummeting. Thankfully I was able to handle the resulting low on my own, and I found that an adjustment as small as a tenth of a unit can do the trick for me. So I start there and allow 3-5 days for the change to settle in. That usually does the trick but I can continue those incremental adjustments if necessary.

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Thank you all for the input so far! I will be sure to implement some of these and talk with my mom. I just want her to feel supported when she is going through the changes that inevitably arise with a chronic condition like T1D.

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Hi Karen, I applaud you for wanting to help & support your Mom ! Just listening to her & offering love will ease her anxiety.
There’s a great podcast called TCOYD (Taking Care of Your Diabetes) done by 2 T1D endocrinologists (they also have a website). It’s very useful for diabetics and their families. Now that it’s summer perhaps you & your Mom will both have time to listen to a few episodes.
If you have any other questions, please reach out here.
Your Mom is lucky to have you !

  • Joanne (T1D for 52 years)