People do not realize the work it takes to care for our kids

Some people do not realize the work it takes to care for a diabetic child. My daughter is 7, was diagnosed Sept 13, 2010. She still needs help to care for herself. She can do a lot by herself but she is still 7 and needs guidance.

She is spending the night with her grandparents this weekend. I educated them when she was first diagnosed but they have never had her all day and all night. I believe they were a little taken aback by the 2 full pages of notes and "just in case" notes I gave them. She is still on the old school insulin of N and R so her eating schedule is planned out for her. I think they were willing and able to get it done, but I am curious to find out if they are half as exhausted as I am after one day. hahaha

There are some people that do not understand that I cannot just walk out the door and do things spur of the moment anymore. Everything needs to be planned out. I keep a bag packed of emergency supplies and meters but what if she needs her insulin? What if its a meal or snack time? Perhaps I am overly sensitive but I cannot stand it when people just assume its easy. "She just has to avoid sugar." RIGHT! I forgot it was that easy! hahaha

If I go anywhere between the hours of 4-8 I am loaded down with 2 bags.....Allie's "meter purse" and her JDRF backpack that includes: insulin, dinner, 8pm snack, syringes, alcohol swabs, fast acting carbs, free foods and an extra snack just in case. That doesn't include the diaper bag for my 2 year old and my purse.  Yes it looks like I am traveling somewhere or carrying overnight bags.

So many people have taken the time to listen and get educated that it isn't as easy as avoiding sugar and it is a lot of work......but there is still that handful of people that haven't and won't take the time. Am I the only one experiencing this?

You are not alone…it gets batter with time…most of my family knows the care it takes aunts and grandmothers…sleep overs were always out with friends I just couldn’t do it

I don't think anyone other than the diabetic and his/her close family members can understand what it's like to care for a diabetic.  Know that some family members will remain stubbornly ignorant about managing diabetes.  My great-grandma would get upset everytime I ate ketchup as a kid because she thought it would hurt my diabetes.  

This video has some off color language, but I love how it covers the people who offer "helpful" advice to diabetics.  [View:http://www.youtube.com/watch?v=nrm7z0owxoc]

It might help you to let up a little.  If blood sugars are high, then take a few extra units of insulin.  If blood sugar is low, drink a little juice or eat some glucose tablets.  Your family doesn't need to know more than that to take care of your daughter.  Your daughter is old enough to test her blood sugar and treat a low, so she will be able to take care of herself.Her blood sugar may run a little higher than you like for a day, but the world won't end.  

Take care.   -Jenna

i have a question to see if i am alone too  i know what you are going through alliesmom i feel the same way its been 4 yrs since my son was dx and he is 12 1/2 a normal boy yes he know what to do he could take care of him self but just like any kids having fun and playing is better then doing what your pose to do to me i feel like im the only mother with a kid that somedays he does not want to be a diabetic and choices not to be one am i alone ? its hard after 4 yrs you think it gets easier i dont think so for example my husband and i work i had to find someone to take care of him daycares say he is too old . i wont leave him alone for 9 hrs i cant . long story short i found a great friend my son's best friend 's mom she watches him it was going great i told her gave her notes the whole thing . well spring break came my son decided he didnt want to be a diabetic other kids from his school was around i picked him up she told me he checked his bs and when she question him about the number he got mad i checked his meter is said too high . i got him normal but when i looked at his pump he didnt take insulin all day we had a long talk with him then next day he took insulin but never checked his bs does other kids do this it has only happened one more time  am i alone?

Allie is still on the old fashioned N and R for right now, and My husband and I are in complete control, so she really doesn't have a choice. But she has days where she has said, "What is the worst that could happen if I don't get this shot?" "I don't want to eat that potato!" "I hate having diabetes. Its stupid."  My little brother is type 1 and when he was in college (oh this is awful to think about) he just flat out refused his insulin and to check his BS. He was 3 hours away so my parents weren't aware he was doing this. He wasn't getting his insulin or checking or eating right.....Beer played a major roll....He ended up in DKA. So I don't think you are alone. His excuse was, "He just wanted to be normal for once." :( makes me sad to think about that.

Jenna- I don't see a link to a video. :(

Hey Alliesmom,

Most people really don't know that diabetes is a 24 hour, 7 days a week, 365 day a year disease.  Not only is it a full time job but a disease in which you (the parent/child) are basically "treating" yourself and being supervised by "real" doctors.  You never get a break from the treatment plan, worrying, planning every meal/carb/insulin dose, planning for the unknown such as illness or going out or going on vacation (we went on vacation with my son to Florida and the doctor was sure I would have to cut his insulin in half with his swimming all day yet his sugars were VERY HIGH the whole trip for no known reason (maybe lack of sleep).  

I too have to carry and have an emergency bag and have extra glucometers EVERYWHERE, I have to replenish his stock at school, make sure when we go out to have all his stuff (between my purse with my diabetic supplies and his my shoulder has been hurting me).  As well, when summer comes the items cannot be left in the heat and right now I am very cautious if he is invited to a friends house.

We tried to "train" our cousins this past weekend in case of an emergency since I am diabetic and not well and my husband travels.  When I tried to go over all my notes they looked OVERWHELMED and said, "Wow, I did not realize this is like a 24 hour a day job" and I also have myself to look after!!!  Needless to say I did not train them and they want to come back when there are no kids around and it is quiet.  My in-laws too seemed overwhelmed and have not learned anything after all their promising to help (I understand as they are very nervous as they are just realizing the huge responsibility this imposes on a parent/caregiver).

This summer will be the first my son is not going to camp since I don't feel comfortable sending him.  He also has ADHD which makes him absent minded and impulsive and hyper so he is not ready to take charge of himself.

I even feel like the hospital is not a big help.  My son was diagnosed in the afternoon and by supper they sent us home.  Lucky for me I know a lot about diabetes but what about the parents who have no previous knowledge?  I also find his school not very helpful and often feel like I am alone in this fight to keep my son as healthy as possible.

I REPEAT THAT this is a HUGE responsibility for any parent with a diabetic kid as we are solely responsibility for their health and no one can really undestand except another parent.

I completely understand how you feel. My son Jackson is 8 and was diagnosed at 3. He just started checking his own b/s last year but before that I was back and forth between home and school 5 times a day. We only have a school nurse one day a week for half a day. I still have to go to school everyday at lunchtime to give him a shot. All this while dragging my 4 year old with me. I feel overwhelmed sometimes. It drives me crazy when people say, "Oh I couldn't do it..." what do you mean you couldn't do it? It is your child's life. We are hoping to get the pump soon, but it is so expensive. I would like nothing more than to be able to go to work while the kids are at school.

You are not alone! I get all of the time from other parents "Oh I couldn't do that or Oh I don't know how you do it". I even have a dear aunt that has said that to me on numerous occasions. SERIOUSLY? Obviously they don't know the consequences of Type 1 or they would never say that. My daughter turns 11 in July and has had diabetes for almost 2 years. She went on the pump 5 months after she was diagnosed and it has been a blessing. She has the freedom to have snack time at shool with her friends w/o having to go to the nurse to take a shot for what she eats. She carries her diabetes bag with her strapped over her shoulder like a purse. It contains her glucose meter, lancets, tests strips, alcohol swabs, guaze pads, glucose tablets, and fruit roll-ups. My purse contains her glucagon which thank goodness we have never had to use. When we head out the door for my son's baseball tournaments, I pack a cooler with juice & free snacks that she can have - turkey, cheese, carrots and lots of water. It may be a hassle to pack and carry extra items because of diabetes, but think of the consequences if you don't. I feel like I'm traveling with a toddler again and getting up in the middle of the night to do blood sugar checks is no picnic either. Then I have to tell myself, isn't it worth it? We do it because we want our kids to be healthy and prevent long term complications from this horrible disease. Unless you are directly affected by Type 1, you will not understand what it is like. It is 24-7-365. We are just lucky enough to have websites like this to know we are not alone!

Thanks everyone for the responses. It helps to know, I'm not alone. I don't want people to think I'm complaining. I'm not, I just want a little understanding every now and then. This has really helped. :) I think people say things before they think it through. After the sleepover last weekend, my dear MIL did say, "I don't know how you get anything done with Allie's schedule." So at least one person now somewhat gets it.

Manddplus3- that is a crazy schedule! I really feel blessed now, we have a full-time nurse in our school. She is a wonderful person, VERY educated and so patient with Allie. But I still have to keep track of her supplies at home, and school and make sure everything is well stocked. This nurse has made school so easy. I would be a nervous wreck with out her!

It gets overwhelming sometimes, but I can't imagine not doing it! This is my daughter and her life! How can someone even say, "oh I couldn't do that"? No one has said that to me yet. Not sure how I would respond if they did!  hahaha

My daughter just had her first sleepover since she was diagnosed 8 months ago, she stayed with her aunt. It was only from after dinner Saturday night to Sunday afternoon, but it took a lot of planning, not to mention the time I spent before hand, teaching my sister how give insulin injections. Counting carbs is not as easy as it looks and I don't feel like many people understand just how precise we need to be. I'll be leaving my daughter for another sleepover with a different aunt this weekend, she is so excited about it that it make all the work it take worth it.

You are definately not alone my 7 year old son was diagnosed 12/08/09.  I am a single mom and he is my only child which does help, but he has asthma and allergies so I always have to take his meter bag along and make sure that we have his inhaler with us as well.  And yes people who do not have type 1 are very uneducated so I always find myself educating people that it isnt all about 'sugar'. I totally understand your anxiety of sorts when she stayed with her grandparents.  I feel that way whenever my son is not with me because then I am not in control and have to depend on others.  And it is very hard. And a lot of work.