What Can Parents do to help with Diabetes Burn out?

Reading what you just wrote Susan-really helped me see some things.What do you or anyone think a parent should do if they see this ?

I think that all of us need to learn to not react negatively to "bad" numbers, but to say, "OK, now what does this information tell you to do?" I wonder how many kids and teens don't test because they see the numbers as bad. Hence, the denial: "If I don't test, I won't know, and if I don't know, I won't feel guilty." We tend to not see it as information, but instead to view the number as the goal. If we don't achieve our ideal number, we feel like failures. No, no, no... the GOAL is not the number itself, but the USE of that number to adjust things properly.

For instance, I LIKE knowing what the temperature outside is going to be. I don't see the temperature outside as a good or bad thing if it is not 72 degrees. I want to know the forecast so I can dress accordingly and remain comfortable. A temperature of 66 degrees is not good or bad, but it is simply something I need to know so I know to put on a sweater. I see the glucose testing process as very similar to this.

I think the idea for me is that the number is NEUTRAL INFORMATION that I need so I know what to do with insulin and food. I think the whole idea of testing is not to feel satisfied if we happen to be in the normal range or frustrated if we are not, but so we can adjust things in a scientific method rather than simply guessing. I need to test if I am in the "bad" range -- not when I am in the normal range.  I can feel when I am "off" and that's when I test so I know what to do about it. So if you look at my monitor, it often shows a number that's off the norm -- but my a1c never varies from between 5.9 - 6.1, so those snapshots don't show that my control is not good, just that I know to test if I feel a change happening that I need to correct.

This may not work for everyone, but for me, the change in attitude is tremendous. The "I can't do anything right cuz my levels are not perfect" feeling melts away and is replaced with a sense of strength and control: ALL of us have the smarts to do the adjustment that is necessary if we know the number that drives the adjustment. The number becomes merely a tool. We are in control because we use that tool to keep our bodies functioning properly.

Dear Susan,

what a fabulous entry. I am the mother of a 12 year old diabetic girl, and what you say is so true. I found it particularly difficult to repond the way you suggest in the first year after diagnosis, because I was so worried and it was all so new. I h ave gotten better in my responses, but will rpint this up and post it to keep myself on track!

Many thanks -

Mariam

Mariam (and any other parents who read this thread),

I was 12 when I was diagnosed. I can still remember the bad feeling I would get when I saw high levels on my tests (we didn't test blood glucose back in the dark ages, but would test the glucose spillover in our urine). I can remember praying, "Let it be GOOD, let it be GOOD." And I remember feeling unhappy when I would see high levels and on the other hand, feeling proud when the levels were OK. In my young mind, it definitely was a "bad girl" or "good girl" thing. I can remember being hesitant to tell my mom what my test had showed if it was not "good." This is what we want to avoid. The poor child who is more difficult to control shouldn't feel like a second-rate human being compared to the child who is easier to control. BOTH of them can grow up healthily with proper treatment. I am a living example of this: diabetic for 40 years, and a healthy grandmother after growing up back before glucometers existed. If a child is seeing abnormal numbers fairly often, then that child just needs to test and adjust a bit more frequently than the child whose numbers seem to reach the normal range fairly often.

As a volunteer for JDRRF's Online Diabetes Support Team, I can attest to many, many instances of people writing in to tell us that they feel depressed or guilty when their levels are not "right." I know that depression is an issue that many type 1 diabetics deal with, and while some of that may be because of the chemical imbalances that happen in the brain if levels are out of whack, and because the situation is a chronic one with no relief EVER, I have often wondered how much depression is due to our feelings of failure when we see "bad" numbers. I think that doctors and parents both can help by making a concentrated effort to not imply that numbers are bad, but to encourage diabetic children and teens to learn to quickly use those numbers to adjust things. The end result is that the numbers will be normalized fairly often if adjustments happen often. But the communication needs to be more over how to best adjust rather than over how "good" or "bad" the number is.

Does this change anything in our treatment? No, not really. But the emotional difference is tremendous. We focus then on the plan of action rather than whether the number we see is what is ideal or not. I suppose my feeling is that the number is what it is -- I can't go back and change what I did 2-3 hours ago. So focusing on that number is sort of like fussing at the child with the skinned knee. Too late to avoid it, although some discussion may need to happen if a pattern of skinned knees is happening -- "What can we do to help change this pattern?" The focus of that discussion is what we do in the future: we don't feel as helpless then, for we make decisions that affect the future, not the past.

I think parents may be able to help their children by TELLING them that they have not done anything "bad" if the number is not ideal. Growing children and teens are NOT going to be stable -- too many things affect our numbers, and stress, illness, hormones and activity changes all play into those numbers. I think that having discussions so the child learns how to adjust food and insulin is the ideal, and the child then grows up learning that he or she is actually in control of his or her health.

Thank you so much Susan--If you blog please let me know--I would like to follow it !

Thanks Susan for this input and a different way to look at things

I don't think that parents tend to find adult, grown-up type 1 people to discuss stuff like this with too often. Parents tend to be paired with other parents. And only the type 1 child who grew up with it knows how we end up dealing with emotional issues because of our "imperfection." As a volunteer for JDRF's ODST, I read a lot of letters that mention the emotional issues. Part of it is because we can never "take a break" but I think most of it is our struggle to not feel like failures when we mess up. And we ALL are going to mess up sometimes. It is IMPOSSIBLE for a type 1 person to have normal levels all the time. My a1c has not wavered from between 5.9-6.1 in over 10 years, so the doctors tell me my control is great. BUT I know that every single day, my levels go out of the normal range several times even on a great day. The "good" control is only that I catch those swings quickly and correct them because I test really often. Our lives are one correction after another. No way around that. And we never should be made to feel like we messed up when our numbers are not in the normal range... we beat ourselves up enough as it is, and so very much of a young person's control depends on outside influences like stress, activity, how much sleep we had last night, and how slowly or quickly that last meal digested. The young person is not in control of much of that stuff.  We just need to learn that the numbers spur action. We don't feel so helpless when we can act to help ourselves.

Fortunately, all you moms, a lot of these issues go away when we reach adulthood. It really IS much easier to keep good control as an adult than as a child or teen.

You know what is tricky ? Trying to find a way to help them make that step into college.They want to be the adults that they have become -make their choices as they should.Parents want that for them--but the d comes into play.Are they going to take care of themselves ? If a parent can see signs of burnout and the young adult child won't listen--it can be hard......Parents never stop being parents,ha !!

I really appreciate your insight Susan. I constantly struggle with the guilt and the borderline burnout.  Your posts have been really encouraging, and I find myself, when with bad blood sugars, taking your advice of trying to look at them more objectively and less guilt-inducing!  Realizing how difficult diabetes is and not beating myself up over off-times has actually helped me considerably. 

Ginny, Ginny, Ginny...

I just read your panic story about what happened with the over-correcting and then over-UNcorrecting. You know, I think we all have been there, done that. The articles I read about how to stave off hypo-unawareness about 13 years ago when some study reports on hypo-unawareness made a HUGE difference in how i correct lows now. So I thought I would pass this along for you to mull over. i have written about this in some other posts so forgive me if you have already read this. If so, skip the next paragraph to spare you from boredom.  :o)

Apparently, hypo unawareness can happen to any of us at any time after a few consecutive lows that were severe enough OR long-lasting enough gentle lows for the brain to call for liver sugars to help out. After liver sugars have been brought into action to help us, apparently some residues are left for about 2 weeks. So if another low happens during that time, the brain recognizes those liver sugars residues and doesn't generate reaction symptoms as quickly. So we drop lower this time. And the snowball continues until we lose our warnings altogether. The solution is to keep levels from dropping low for 2 weeks. Almost impossible for someone who is tightly controlled. However, one thing we can do to help is to ALWAYS go for the quickest possible glucose, which is as you know juice, Gatorade (faster than juice, according to some things I have read -- but you need to drink more of it) or glucose tabs. Instead of snack foods, for they have to digest, and almost ALL of them have fats that slow the digestion time.

So I suspect that your problem was more that the snack bars were too slow in digestion and release of their sugars. Think Gatorade or juice next time. I know that glucose tablets are supposed to be the fastest, but I personally hate them, and you just have to eat so many of them to get some carbs in you that it can be frustrating. Juice or Gatorade at least is palatable. You do sort of swim away, though...

But ALL of us have done this. All of us who are trying to be tightly controlled. It is NOT possible for a type 1 not to make a mistake every now and then. We have to not only count carbs but also to figure in the digestion time, activity levels, stress levels. It just is so complicated. It sounds as if you did everything perfectly except for the panicky eating, and frankly, since the brain isn't working well when levels aren't OK, even that seems like you did the right thing. Better to overeat than to pass out from hypoglycemia. You are absolutely correct that this is the better thing to fix.

All I have over you is years of having done it. I still make mistakes. I really do. We all do. The numbers are just scientific info to react to. Guilt free. Guilt free. Repeat after me: Guilt free. Then giggle a little and enjoy life. Your panic-reaction story really IS a funny one. I think all of us have some really hysterical stories. Not funny at the time, but later on, we look back and can really snicker at ourselves.

My funniest is one that I don't tell too often, but it still brings grins. This was back when I was still in complete hypo unawareness after being overdosed a bit by my doctors for my second pregnancy to see if we could produce a small baby rather than the typical large diabetic's baby. Remember that this was 27 years ago when a lot was not known that we know now. I would have reactions in my sleep, and my husband would waken when I began moaning or flailing wildly. My father came to visit after my baby was born, and my father had suffered a very severe heart attack about 10 years earlier. So that's the stage. What happened is that I had a low during my father's visit. I tend to drop when stressed rather than having levels rise like most type 1 folks. So hubby woke up with me flailing wildly and moaning. He was afraid that I would wake my Dad. My dad had never seen a severe hypo episode. Hubby was afraid my Dad would have another heart attack. So when I did not respond quickly so he could get juice in me, he decided to wake our next door neighbor couple for his brilliant Master Plan solution: get Neighbor Wife (all names removed to protect the innocent), a good friend of mine, to babysit quietly, while Neighbor Husband helped Hubbie get unconscious Susan in the car to drive to the ER for an iv of sugar. This was before the days of Glucagon. So Neighbor and Hubbie carried very-stiff-by-this-time Susan down the hall, one at my head and one at my feet with me horizontal like a board between them. They tried to slide me into the back seat of our car. My arm got stuck above the roof, so Neighbor did some finagling and got me into the seat, still stiff, but with arm now lowered. Hubbie drove to the ER and I woke up with an iv going. Realized what had happened, apologized to Hubby. Hubby reassured me that his Master Plan was to have my friend babysit until I got home. The iv of glucose is painful -- sort of burns the arm vein. So a few hours later, I was released as good as new but with a sore arm vein. Went home, thanked Neighbor Wife profusely and quietly and we both went back to bed until morning. My Dad slept through the whole thing. Next day, all went according to the Master Plan. Hubbie went off to work. My Dad and I got up and had breakfast as if nothing had ever happened. All was well until mid-afternoon when Neighbor knocked on the front door to ask how I was feeling. I said "fine, but my arm is sure sore." His eyes widened, his face turned white, and he fled, leaving me wondering what his problem was. He thought he had broken my stiff arm when he lowered it to slide me in the car!

My husband and I still laugh when we tell this tale. My father never knew that anything had ever happened. He died with a second heart attack shortly after all of this, but it wasn't because we scared him. So the Master Plan worked. We have warm memories of the scared young Hubby and Neighbor's plot to keep Dad asleep and haul Stiff-As-a-Board-Susan down the hallway quietly. Would make a good comedy movie.

Your episode would make an equally good comedy movie with Ginny frantically stuffing food down her throat. We are tough survivors and no lasting harm was done. You now have a hysterically funny tale to tell. Priceless.

 

Thanks for sharing!  It true that ravaging the cupboards for every carb possible was pretty funny, and making dehydrated backpacking food.  My roommate was eating a clif bar later and I commented that the idea of it made me feel slightly nauseous. All said and done, I definately came out of the episode with a stronger appreciation for being prepared for anything and realizing mistakes happen easily and quickly. 

We can be quite the comedians, can't we? Yes, we all get complacent when a long period of time has gone by without any scares, and mistakes tend to happen when we just get busy with life and forget. For any parents out there reading this, an occasional mistake does NOT mean that your child is not taking care of him or herself the best he or she can. The important thing is that Ginny HAD some high-carb foods readily available and that she had her roommates well educated also. So she has her safety net in place.