Family members and their knowledge of D

General
1

A below post got me thinking of my annoyance with family members that simply refuse to educate themselves with type 1 diabetes.  My Dad for example, although we aren't terribly close and only see each other a few times a year, the same repetitive conversation always occurs.. "So... can Brookie eat that?" "Hmm.. interesting, I thought you couldn't drink alcohol if you were diabetic?" (not in reference to my daughter, in reference to a girlfriend of mine), "Oh, I thought she couldn't have sweets"."Oh, is she okay at school all day long?" "Is she allowed to carry her supplies into the classroom?".. and the list just goes on and on and on..

I get blue in the face trying to explain the same thing over and over again.  But what really irritates me the most is that my Dad doesn't sit down at the computer, google away, or perhaps read a book about type 1 diabetes. Clearly anything I say goes in one ear and out the other.  And honestly, same goes for my Mom (whom I'm totally close with).  Although she has a better understanding and is certainly comfortable administering my daughter's shots, she still doesn't totally "get it".

Our friends too.. would it really hurt for them to gain a little bit better understanding of diabetes?  Let's be honest, the information is easy to find and comprehend.

I know if it were a family member of mine, or even a close friend, I would be all over knowing how to better understand and care for them.

Does this sound familiar to anyone?

2

Jillin my uncle's wife is the same way she kowns that I have diabetes but she just will not take the time to google it or read a book about diabetes. Now as for my friends they are not that way my friend kelli wanted to kown more about diabetes after she found out what my pump was and everything. So now that she kowns just about everything there is to kown about diabetes and how to care for a diabetic everytime someone ask what that is on my side (it would be my pump) or i am doing something elase like checking myself I would look at Kelli and she would tell them but when it came to telling my boyfriend i did not have Kelli around so I had to tell him myself.

Jillin maybe if u would find stuff online and printed the stuff out and gave it to your mom and dad maybe they would read it. Hope this will help.

3

I think this is a big issue with a lot of families with diabetes in their lives.  I think the bottom line is, if you don't live it, you just don't get it.  I like to think, becuase of diabetes, I have more empathy and understanding of what other families with chronic illnesses go through...but I will never understand like they do. 

I'm not making excuses for your father.  I have family that is the same way too.  I don't know why they don't try, but I've given up expecting anything out of them.  Fortunately, I have some family that DO get it, and I am very blessed to have them in my life!  I also think maybe you should tell him that it would mean a lot to you if he read up on it.  Tell him what a enormous part of your life it is...maybe he'll make an effort!  Happy Holidays! 

4

You can choose your friends but you can't choose your relatives unfortunately.

5

none of that really sounds too bad. I was diagnosed at 11, a few months later I had to visit my dad for 2 weeks... went into DKA and mom had me put on a plane home because he had no clue. I didn't see him for a few years after that.

I'm 22 now and he still has no idea about anything D related. He doesn't ask. He's never looked anything up. Anytime I see him I will get the occasional "is it okay if we have X for dinner?" or something related. Then when I say yes of course... and attempt to go into a some what educational talk about my disease I get cut off with  "As long as you are okay with it and can do what you got to do."  from him and the conversation is over.

At least your father asks, even if it doesn't seem to be getting through to him.

6

I see this kind of discussion from so many diabetics on all the forums I have visited. It is good to discuss it here so you will see many of your fellow members have the same problem.

I was diagnosed in 1945, when I was 6. Very little was known about diabetes. My doctors did not know enough to give any good advice about diabetes management. "Don't eat sugar" and that was all we knew. People being diagnosed in modern times are so lucky that proper diabetes management is well defined and the knowledge and technology is available that will enable you and me to live long, healthy lives.

If family members and friends do not seem to care, we can take a deep breath, and be grateful that we have the means for having good control of our diabetes.

 

Keep the conversation going. I also have relatives and friends who are not interested in my diabetes. Thank God my mother and my wife took great interest and have been there for me.

7

I am lucky to have amazingly supportive and well-informed parents (I was diagnosed at 10, so we all learned together).  The rest of my family, though, and my friends are not so well-informed, and I don't think they ever plan to be.  The subject is usually just avoided.  Or occasionally I will get what I would assume is a back-handed compliment such as "I always forget that you are diabetic (if they see me take out my pump), you look so healthy!"  "Umm...thanks?"  It is upsetting at times that my brother and my close friends are not more educated, but I guess I can't expect them to be if I don't try to inform them about the disease myself. 

When I first started dating my now fiance, he googled the subject right away and learned as much as he could about it.  That's one way that I knew he was a keeper.  :-)

8

Jill, I know exactly what you mean. My own MOTHER can't remember if I have type 1 or 2, and SHE'S the one who took care of me when I was diagnosed at 4 years old. Maybe it's her menopause, but I hate having to constantly explain it OVER AND OVER AND OVER.

 

I'm also sick of dating someone and having to explain my entire medical record with him. For once, I think I might try and find a juvenile diabetic to date! LOL

9

You might try taking your dad to a doctor appointment with you.  Sometimes hearing the same thing from a "professional" makes more of an impression. 

I've linked to this before, but if you haven't seen Mike Lawson's YouTube video about the Diabetes Police, you have to see it.  (Be warned there is some off color language.)  It will at least give you a laugh about how family and acquaintances sometimes deal with diabetes.

http://www.youtube.com/watch?v=nrm7z0owxoc

10

I'm sorry your families aren't ll more supportive. Learning about T1 shows you care about the person with it IMO... My maternal grandparents won an award for highest fundraisers in CT one year from JDRF and it meant a lot to me to "inherit" their award when they died... Showed how involved they were.

I think part of the problem is that d-care has gotten more and more complicated. When I was diagnosed in 1982, my grandparents babysat and gave me 2 shots a day (mix of R/NPH), limited my food to a meal plan, and called 911 as necessary. We didn't even have a home glucose meter yet. I don't think anyone in my family, other than my husband and probably my Mom, have the first clue about carb counting, correction doses, boluses, etc, etc. My in-laws STILL forget to tell me what we'll be eating at each meal so I can bolus, and I started dating DH in 1997... And, I don't even have a pump they'd have to try to understand.

11

I hear your frustration, but you can't control other people. You have support here when you need it from people who understand.  And I don't really think it's a big deal when people don't understand.  After all....

I have a cousin with Crohn's, an aunt-in-law with Alzheimer's, my parents both take blood pressure meds, a coworker with breast cancer, and I have another cousin who has depression.  But I can't say that I have educated myself in any way about any of their conditions.  For sure I have heard things here and there, but that doesn't mean what I know is accurate and I've probably put my foot in my mouth more than once.  At the same time, I can't possibly be educated about every disease, syndrome and illness there is. So is it right to expect it from others?  As long as YOU know accurate information, that's all that matters.

 

12

I'm not trying to belittle your experience (I can't even imagine having kids with diabetes!), but I think it's different when you actually go through the physical consequences of having diabetes.  As you're familiar with the millions of sugar checks, infusion set changes, ketone checks, endo appointments, etc. I can definitely relate to you and your frustrations with other family members who don't put the time & energy into researching diabetes.  

My familial relationships are a little strange.  My mom (perhaps since it's a maternal instinct to care for your children, etc.) has always been dedicated to learning about new diabetes technologies, going to JDRF meetings with me, raising money and helping create my first walk team when I was 7, and checking me in the middle of the night.  Even up to this day, as a college student, if I ask my mom to check my blood sugar in the middle of the night, she's there and ready with my checker.  :)  I am so thankful that she dedicates time to actually becoming educated about diabetes, since it not only affects me, but could ultimately, perhaps, affect her grandkids.

My dad, who was diagnosed at age 35 with type 1 (when I was about 9), is, on the other hand, completely illiterate when it comes to managing his disease. It's really saddening to see him not care as much or put as much time and energy into checking himself, going to endo appointments (I'm not even sure his insurance covers that, and I know his insurance does not cover an insulin pump), etc. since I spend so much time with advocacy and try to learn about up-and-coming technological advancements that'll benefit those with diabetes.  

As for my sisters, they still sometimes forget when I have to change over my infusion sets, but they've got the basics down.  That doesn't necessarily mean they know all of the ups & downs that one with diabetes can go through, though.

My boyfriend is amazing at helping me with it, and is always there for me when we go out during weekends, reminding me to check myself (when we both know that's not his responsibility, anyway),  getting me water and putting a movie in when I'm high, or juice boxes when I'm low. :)

Overall, I think things could be much worse, and I'm glad some of my family, anyway, are enthusiastic about educating themselves about diabetes.

13

Hi Jill, do you remember the overwhelming feeling of information overload when your daughter was dx'd? It certainly didn't feel D was easy to learn and comprehend to me at the time! There is a LOT to learn and keep track of. However, you as a parent have a specific motivation for learning it - I need to get this right so my kid doesn't die! And you live it everyday so it quickly becomes second nature to you. Your father just doesn't have the same motivation. He may be asking questions because he honestly does want to know and just can't remember from visit to visit or maybe he because he thinks its polite. At least he is trying. For a lot of people, if they don't do something everyday or everyweek, they just don't keep it in their heads. So that might explain why if you only see him a few times a year, that he doesn't remember everything. And what with almost all media talking about how to prevent type 2 diabetes by eating differently or whatnot, then is it no wonder he gets confused? Hey at least he is asking if she is OK at school and is thinking about it enough that he asked if she can bring supplies into the room. To me, those are kind of insightful questions. For me, i'd prefer answering the same 'dumb' questions over and over vs having to deal with someone who thinks they know better than me or has lots of "helpful" suggestions - like "just feed her better and she'll get better."

Does he google and read books about other topics? If not, I guess I think it's unlikely he would do it for T1D. Even if it is his grand daughter that has it. Have you sent him a link to a good explanation of living with Type 1 after a visit? Like, hey Dad, great to see you this weekend. I appreciate all your questions about Brook's care. I thought you might like reading this website to learn more about living with T1. Or handed him a book that you liked? Some people won't go out to find the information but would read it if it is basically handed to them.

I'm not trying to minimize your frustration, I just think it is more helpful to see the good in it - my dad likes to ask how many calories are in what my son is eating. I just laugh and correct him and move on.

14

My parents and fiance are great about it.

We did have to discuss the issue with my paternal grandmother a few times, though - she believed for years that I got diabetes because I ate too much sugar as a kid (that classic old wives' tale!).  She finally acknowledged she misunderstood when we took her to the JDRF web site that explained away the popular sugar myth.

My older half-brother, a type 2 himself, also did not understand the causes of the condition, and still may not.  A few months ago he said he read an online article by a doctor that "diabetes" is caused by eating too much meat (NO differentiation made between type 1 and 2); the discussion that ensued between us was entirely unproductive because I was never given the opportunity to demonstrate the incontrovertible evidence to the contrary in the case of type 1.  We haven't spoken about diabetes since, but I did post a few letters from JDRF on the walls for months afterward, and he's likely overheard my mom and I discuss the issue, so he might be aware now.  I'd rather not get into another talk again though just in case, so I will continue to leave the issue alone unless he brings it up again in a neutral tone.

To conclude, I'd like to add that I find it a little ridiculous that anyone could look at me and think I consume much more sugar or meat than the average person.  At 5'2" and 115 pounds, that would be really hard to do.  *roll eyes*