Family Knowledge of T1

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1

I've seen some posts relating to family members recently and it has me wondering ... how much to your family members understand about your daily diabetes care? Does one parent take on more of the caregiver role than the other?

For me...

My husband is quite familiar and understands insulin/carbs ratios, correcting, etc. But, still needs reminders from time to time b/c doesn't typically do the math himself and I change my ratios all the time w/o telling him. He's very good at checking carb counts on food packages.

My parents, esp Mom, are very familiar with the care I used up until I was 18 and left home. But, although they understand the disease in general, they are no longer very familiar with its current care or my routine.

My 2 sisters probably have a vague understanding of the disease and my care, but nothing too in depth.

Obviously, this is mostly my fault b/c I'm an adult and could educate them. I DO wish my husband would figure out how to get a lancet in and out of the device b/c he claims he is physically unable to figure it out, lol.

2

my mom knows everything, almost. my dad understands but is a bit..... disabled from completly..... knowing stuff because of his extreme fear of needles(he has made big improvments since i was diagnosed, he can give me shots. or, was). stefanie... im not sure. she knows that i need to test, possibly knows what i do to test, knows i need insulin, possibly aproximatly how much and other basic care needs, like i need sugar when low, you can give me this, this has carbs bit this doesnt..... meghan knows i have to test and that my pump gives me my insulin and i use needles and other shrp things.... but i do need them. (thats good for an 8 year old i think.) nicole is between stefanie and meghan but closer to stefanie i think.

3

My mom has always been the one to be more of the "caregiver", especially when I was younger. It took my dad a few years to even learn how to read the nutrition facts to tell me how many carbs there were lol. I'm pretty independent with my diabetes now, though, so they don't really do much anymore except occasionally ask me how my blood sugars are.

My older sister knows the main details about it, but she doesn't really talk about it at all. I remember once, probably two or three years after diagnosis, my parents thought it would be a good idea for my sister to learn how to give me an insulin shot. I was opposed to this idea from the beginning, but they wanted her to learn. So, when she first tried to give me a shot, I remember her stabbing the needle in me, and then she got freaked or something, so she took it back out, and then put it back in and injected. Hahaha, let's just say that she never tried again. She would know how to work my glucagon, though, if I ever passed out.

4

My daughter is 12 and was diagnosed in Feb of this year.  The entire family participates in her care.   Alexa does her own shots and calculations, but, my husband or I always verify her numbers before she draws the insulin.  Her older sister who is still living with us, also knows how to complete the calculations and verifies the amounts.  I don't think she has actually given Alexa the shot.  Her oldest sister is away at college, but when she comes home, she is very involved with helping her younger sister.

We try to inform just about everyone around us because it is important that they know.  Some people are more interested than others.  Some just don't understand.

5

I was diagnosed at 18, therefore I took charge immeditately especially since I knew I would be leaving for college within 3 or 4 months. my mom was the one who was with me through everything, so she understood carb counting and giving me glucagon if anything were to happen. Currently I go to all my appointments alone and don't really have family participation especially since I have used the pump.

They understand what it does and that I can enter my carbs into it, and my mom was interested in seeing me go through the process of the insertion of an infusion set.

My dad doesn't know anything really. He knows I have to "control" what I eat, but he doesn't understand fast acting sugar like regular soda, or much of anything. I'm pretty sure he remembers that he needs to give me a glucagon shot if I were to be unconcious, but I don't think he'll know that it means I have a low blood sugar, I'm not quite sure.

Again - I'm on my own in college about 8 months out of the year, therefore, a LOT can change during that time as far as rates and carb ratios. However, I give them credit for the participation they do try to do, and that they are willing to buy special food for me like sugar free syrup, diet sodas, and more.

 

Courtenay - just curious how old are nicole and stefanie? I don't have siblings so I'm curious how extensive the understnading is at different ages, because I do babysit a lot!

6

Parents: extensive.
Brother: has actually given me a shot :) which was a super great moment
Other siblings: close to nada.

But I declared my little brother "honorary diabetic" out at dinner tonight and let him wear my bracelet. He had a blast, telling anyone who would listen "I'm honorary!" and playing with the clasp (which is a step up from him playing with it while it's on my wrist - it pulls hair, lol!). Little did he know what a great break that was for me :) I'm not always too keen on wearing it, ha ha.

And extended family? They try, but. Nada as well.

7

my immediate family is pretty knowledgeable. my parents are unfamiliar with my new pump, mostly because i wasn't living with them when i got it, but they know how to treat lows, give shots, figure carb-insulin ratios, and figure correction boluses. while my sister has never given me a shot, i know she would if i asked her. i do blood tests periodically on my family and they don't mind. it gives them a sense of what i go through and they're always curious what theyir results are :o)

my extended familyl has a pretty good understanding of diabetes and how to take care of it. my grandma was a nurse for 40 years, so she has given me shots before. they're pretty good about blood testing, some don't mind doing it, others prefer not to (but would do it in an emergency). they know how to treat lows, but don't now how to use a pump.

for the most part, they know what's important and i'm fine with whatever they don't know.

8

No one really knows in my family.  Growing up, my father would give me shots in the arm b/c I couldn't reach but that would be maybe a couple times a week (was only two shots a day back then).  My mom knew my diet needs and would cook dinner but I'd measure everything and make my own breakfast and lunches from the time I was dx'd.   I always made it my disease and the info that is out there now wasn't around back then.  My brother just made fun of me for having diabetes and my sister tried to give a shot once but it bled and she freaked.

Moving on to present time - My mom even asked me on Friday why I change my pump.  It's my own fault for being close to the vest.  My wife knows a little but just lets me do my thing.  She'll know how to test if I ever pass out and knows how to give a shot if needed but I've never needed her to do it and hope to keep it that way if at all possible.

9

I was dxd at nine. My Grandparents who raised me had pretty good understanding. My grandma knew how to take my sugar and give me my shots if needed, but I was pretty much on my own. They believed (and were right ) that they wouldn't be here forever, so I had to know how to take care of myself.

My parents know nothing, however one of them thinks they know everything there is to know about diabetes.

My siblings are the greatest but they don't know anything about diabetes either.

I met my husband when I was sixteen and over the past 14 years I think he has earned his right to be an "honorary diabetic" too. He knows what I know. He has given shots, taken my bs (still does every night while I am sleeping), orders supplies, he knows how to set up my pump, and he knows when I am in a bs related mood. I am very grateful.

10

nicole is 10 years old and stefanie is 12

11

my dad doesn't know a whole lot..only what he knows from the diabetic he works with(who he admit takes horrible care of himself) and this and that.

my big brother knows more than my dad, after all he took care of me when i was younger and gave me shots. but he doesn't know it in as much detail as my mom or i do, and often he'll ask how something effects my diabetes or what i mean when i give him an update on something regarding my diabetes and he'll admit that he didn't know this or that when i explain it. he does know more than the average person though for sure..less than my mom but WAY more than my dad. and he knows how to test my blood sugar, what it should be at, what the signs are for lows and highs, etc.

my mom knows quite a bit, she took care of me as a little kid after all, was there for the whole thing and HAD to know everything..but since moving out and becoming more independent(though she still comes with me to certain appointments with various doctors when it effects my diabetes because she knows more about my diabetes control when i was younger and she wants to understand whats going on so she can help) she doesn't understand as much. she's still fixed on the idea that i have to take my insulin 10minutes before eating, that i have to take insulin for everything i eat..when my endo has told me if its less carbs than a sandwich, don't bother. she also understands carb counting LESS than i do and probably HATES it more than i do! all in all though, she's trying to keep up and still probably knows more than the rest of my family. when i talk diabetes with her, she understands what i'm saying.

she really wants me to get the pump though, now that she's spoken to the rep and has more understanding of it. same with my brother and my dad.

12

Oh my goodness.

I'm sitting here reading all this and it actually occurred to me that there's not one person in my family who would really know what to do in an emergency, or really knows how diabetes works! AH! 

I was diagnosed at 20 years old and my family visited me in the hospital, but there was no one teaching them how to give me shots or anything if necessary. I was a grown up, so I guess the nurses really never thought about taking the time to inform them or let them practice (heck, I didn't even get to practice. I've heard most people get an orange to practice a shot?...that's probably just for little kids... Haha, I was put in the hospital and the lady said, watch me do the first one, you can do the next.....uh, scary!).

My mom was there to understand the carb counting, but if I REALLY think about it, she's got to be clueless. The sad thing is that she's probably the MOST informed in my family. Lol, guess I'll be having a family meeting, complete with an overhead projector and a white board. Some flash cards might be handy. Geesh.

13

My son's been too busy to step onto Juventation lately, so I'll respond for him.  We "argue" over who knows more about diabetes, he or I.  He, of course, lives it.  He feels it.  He manages most of it.  He carb counts breakfast and lunch.  If someone else counts the carbs, he does the math for the carb ration.

My husband and I both spend three days in the hospital with him learning everything along side of him.  We all have to give him shots before he could leave the hospital.  Since the hospital, my son gives all the shots, save one more from my husband, 2  from a friend, and 1 from another friend.

I've read Type 1 Diabetes for Dummies; The Discovery of Insulin; and Think Like a Pancreas.  I read tons of news stories, websites, pamphlets from the hospital and juvenation.  I have the book knowledge.  I'm the one who asks most of the questions at endocrinology appointments.  I do most of the cooking and therefore carb counting for supper.  I handle getting supplies and prescriptions.  And I think I take on the lion's share of any worrying.

My husband has a shelf in a closet where he manages all the supplies and prescriptions.  My husband has a knack for wild-ass guessing carbs when there is no information to go on.  He was a pro on a vacation in Munich in August and Aaron's numbers were great.

The 13 year old brother understands a lot of it.  He WANTS to give his brother a shot, but his brother won't let him.

My son's friends are learning and interested.  He has the greatest group of friends.  When I recently commented how much I appreciate them and related that some teens on juvenation have problems with their friends because of diabetes, the friends were puzzled why that would be.  They are very accepting and realize that my son is still the same person he's always been.

The dance instructor is in denial, although she got a dose of reality the other night when he went into the 50s and took a long time to climb out.  He had to sit out a lot of dance that night because he felt weak and dizzy while low.  After class she came up to me about in tears, saying, "I hate diabetes."  Welcome to the club.

The real gap is the grandparents, although they all live 10 hours away.  My mother-in-law is open-minded and wants to learn.  She read The Discovery of Insulin (just because it sounded like a great story) and is now reading the dummies book.  She went on the Munich vacation with us, so saw the blood checks, carb counting/guessing, insulin shots in action.  My parents, who have both been type 2s for years, are stubbornly ignorant, sending my son sugar-free candy and things like that.  She sent some animal crackers recently (my kids aren't five year old anymore, don't ask me why she sent those) and highlighted the grams of sugar on the box, even though I've told her many times that it's the carbs that matter.  They haven't seen him since diagnosis, so Thanksgiving and Christmas will be interesting.  They are horrible type 2s who remain grotesquely overweight and inactive.  My mother would be the type to try to talk Aaron into handling his diabetes differently if we weren't around, because she feels like she knows better and likes to feel in control of my kids when I'm not around.  I have the feeling I'll be around when she is!

14

I have a large family, and I guess they all have varying levels of knowledge. I was diagnosed when I was 12, and I've always done pretty much all of it on my own.

My stepmom probably knows the most. Her brother has type 1, so when I was diagnosed, she already knew how to test and give shots. She always keeps track of how many carbs are in things she's cooking.  She checks in with me every once in a while to see how my numbers are, makes sure I have enough supplies and comes to my appointments with me. She doesn't know how to use my pump, but she knows what to do in an emergency.

My dad understands all of it, but he's not involved with it at all. He knows what to do in an emergency though.

My oldest brother doesn't live at home, and I'm pretty sure he has no idea what diabetes is.

My sister, younger brothers and stepbrothers know how to test and what to do if I'm low. If something happened at school, they would call my brother down, so I made sure he knows what to do.

My friends probably know more than most of my family. A few of my friends know how to test (they like to waste my test strips having a competition of who has the highest blood sugar), and they know how to work my pump (again, they like to play with it).

My grandparents, aunts, uncles, cousins etc, have no idea about diabetes. They know I have it and that I have a pump, but they have no idea what I actually have to do.

15

Even after the first few months post diagnosis, my parents were really not all that involved in my care. I think it was more my asserting my independence than anything else. But my parents were in the dark. I mean my dad would get my prescriptions for me, but that was really it.

If something were to happen to me now, I can't even begin to imagine what my parents would do. I mean my mom would flip out and go into shock probably. Where as if it is due to a low, my dad could handle it, but the day to day treatment he has no idea. I have only been on a pump for over a year now and while my mom and dad know about it. If I were to need an emergency bolus due to high sugar my parents would not even know what a bolus was or anything else. It is pretty much just me and my pump.