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I really don't get my mom sometimes...

Discussion in 'Teens' started by Timmy Mac, Feb 6, 2012.

  1. Timmy Mac

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    Last night I was scrolling through the CWD forums and my mom started looking over my shoulder. She asks me if I'm talking to people and I say "not really." Then she asked if I learned anything and I said that I'm apparently the only diabetic that doesn't test at night, and I pulled of the parents of teens section and showed her one of the many threads on the topic.

    Then she got mad at me and said only the newly diagnosed or really little need to do that, and I pointed out that theres a lot of people on here who are either close to my age or have had diabetes just as long. My mom then started screaming at me because its "not necessary" and that I'm also not allowed on this site or any diabetes site anymore... then she stormed up into her room and slammed the door.

    She stayed up there (not talking to anyone) for about 15 hours, but then this morning, everything was perfectly normal.

    She screams at me every time I try to bring up a new idea about D management or if I EVER dare to mention the "P" word. I STILL havent told her that I started splitting my lantus. Even though I started splitting it 2 months ago! I'm really afraid of what that conversation will be like.

    I really dont know how to talk to her about D at this point... Which REALLY sucks because it takes up so much of my life!!!!
     
  2. emm142

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    It sounds like kind of an overbearing relationship, considering that you're 19. I mean, my mother doesn't know about all of my medical stuff. The only thing we ever really discuss is CGM because it took a lot of fighting to get any sensors covered, and even now I only get 10 every 6 months so a couple of times she has bought me sensors and we've talked about it (she thought it was awesome) when I was sent sensors by somebody on CWD. We don't discuss my day to day diabetes management. EVER.

    I think my mum would worry if I told her I was night testing, because the fact that I'm testing at night implies that I NEED to test at night, and she'd like to think that I don't need to test at night because that means I'm safe at night. ;) But she has no input into what I do to manage my diabetes and whether I wake up at night or go on CWD is 100% my business. Part of this could be because I don't live at home, but even when I did it was pretty much the same.

    But if that wouldn't work for you and you really want to talk about diabetes with her, maybe just bring it up gently. Possibly write it down so that she can think about it without you actually being there. Just something like "I'd really like to be able to talk to you about diabetes, but sometimes I don't understand your reactions. I wonder if we could sit down at some point and discuss how we could talk openly about it." It might be a slow process but if she's the slightest bit reasonable then you should be able to get there. I'd just first consider whether you want the open discussion enough to make it worth the work it will take to get there.
     
  3. Timmy Mac

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    my problem is that I DO live at home and I see her every day. I want to be able to tell her about what is going on in my life, but when I do I'll get yelled at for it. I wanted to be able to tell her that I'm attempting a major change in my insulin, but she wasn't open to the idea AT ALL when I mentioned it last year.

    My parents supported me for over 10 years through everything, now they just don't seem to care. I live in a house full of people, but I still feel so alone when it comes to my management :(

    Now don't get me wrong, I would rather not have them going through my numbers every night or yell at me whenever I forget a shot or BG check, but I would like them slightly more involved than they are now... They basically give me $20 a week for test strips and thats the end of it.


    I think I could try writing a note, but that would be so unexpected idk how she would react to it...
     
  4. sarahspins

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    Well, to put it simply, you are an adult and it's not really a concern of hers at this point. However you choose to manage your care, is 100% your choice. Yes, you still live at home and that can make some things harder, but your medical decisions are your own. Sure, it would be great to feel like you have more of her support, but it is what it is.

    I think you have done an incredibly amazing job taking care of yourself with very limited support. If she had wanted to be more involved, she would be on CWD and she would be bringing up many of the things that you try to talk to her about, but she hasn't... that honestly says a lot. I hate saying it that way too, because it sounds horrible, but you can't expect her to suddenly "get it". The fact that you two do have fights about it shows that she DOES care, but you probably can't do anything to change the way she thinks about all of after 10 years of her being convinced she knows best, and trying to talk about it may only be the source of more conflict.

    I have had major conflicts with both of my parents at various points in my life about various things, D included. Both my mom and my step mom are nurses and trust me when I was diagnosed it was pretty miserable trying to talk to either of them about any of it - nothing that they knew or understood about D was relevant to me (both primarily worked with older patients, and if they had D odds were very good it was T2 and uncontrolled) and yet both were solidly convinced that they knew absolutely everything about D and they knew best and everything I was being told to do was "wrong".. despite the fact that T1 is much different than T2 they didn't seem to grasp the differences. Both still think I test "too much" because I'm "out of control" and my mom even thinks when I wear my CGM I don't need to test at all... and even better still, it talks to my pump and does everything for me (don't I wish!), and my pump is some magical device that automatically knows how much insulin I need. They just don't get it and I've tried correcting them time and time again, but they're the experts, not me, so whatever I say doesn't really register for them. :rolleyes:

    I have learned to just let it go (and not just relating to D). Bottom line is that while they do care, the details are not really any of their business, and while I would love to have support and understanding, it's probably not ever going to happen, and I would rather just not talk about it at all than to have to defend how I choose to take care of myself. Even my husband doesn't fully get it, and to his credit he has definitely tried to understand more than anyone else has, but it's hard to fully grasp the details of something when your own life doesn't depend on it. I learned what I know because I had to, just as you have, and I understand the longing to have someone else be more involved, but I think sometimes you have to take a step back and realize that your parents do love and support you, even when it doesn't seem that way.... it's just that they just don't know that they're wrong, and they don't know how to be any different about it.

    I think that writing a letter to your mom may help put some things in perspective for you - even just clarifying to you how you feel about it can help you, but I wouldn't necessarily plan on actually giving it to her. I can't even count how many truly horrible letters I've written to my parents in my life when I have been upset, and in the end I usually feel better just getting it out, but there's no way I'd ever want to deal with the fallout of actually giving them one of them.
     
  5. TheFormerLantusFiend

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    The parents here check overnight, but most parents don't. Most doctors don't recommend it. And if you start a conversation with your mother with what will definitely feel like an accusation to her, and your relationship is already tense, she's gonna yell.

    I feel that the only way to function with my parents is to pretend as best I can that I expect nothing from them, and any interest they show me, or any favors they do for me, is an unexpected bonus. It's hard. You feel like, they're your parents and you deserve to have parents who care. But... if you flip it, they've done a lot for you, they want to do their thing and they're more interested in living their own lives, and dealing with their own problems, than they are in dealing with yours. Which isn't such a terrible thing.
     
  6. obtainedmist

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    I don't think your mom is going to change, but I think if you understood her emotions behind her reactions, it might help you accept her limitations. To me, it sounds as if she feels defensive when you try to find solutions to D management other than one's she's helped you with. She might be feeling that you are criticizing her parenting abilities, instead of wanting to manage your D the best way you possibly can. She might be in denial about the dangers of low blood sugars. Her coping skills might be impaired and so, she would rather not tackle fears of any sort. This is all conjecture...but do you see where I'm going with it?

    You might want to try to find some support for your D care in other places. It doesn't help much to try to get someone to give you support if they are incapable of doing it for whatever reason. It doesn't help you to feel angry about it, because that's only going to make you feel worse. I would try to accept the situation and her unwillingness to discuss anything new in the D care front...and move on. You are doing a fantastic job of being your own best advocate by trying new things and being dedicated to doing the best you can! Kudos to you! :)
     
  7. Flutterby

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    Maybe they're having a hard time 'letting go'.. sounds like maybe your mom is feeling guilty because she's not the one doing it anymore, and changing what "she's" done in the past is some how reflecting on her?

    You're 19, its GREAT you want to include your parents in your decisions.. Maybe at this point you just need to make the change and tell them, instead of discussing it or asking then to do.

    I don't have a teenager yet, but I hope when she is a teenager and doing things on her own she still discusses things with me... I hope...
     
  8. MommaKat

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    This, absolutely

    and this...

    There are so many things going through my mind right now in response to your post, and sadly they all want to tumble out at the same time. I thought obtainedmist and flutterby said it perfectly, and it seems possible that you looking into different ways to manage your care strikes a guilty nerve in your mom, especially between the yelling and locking herself in her room for 15 hours.

    Trying to understand her reaction and response is probably pretty futile unless she can reach a point where she's wiling to open up about the feelings behind it all, and right now that doesn't sound likely (maybe down the road.)

    I love your idea about writing a note, and you're right - there's no predicting how your folks might react. It might help if you start out by letting them know how much you appreciate everything they've done for you over the last ten years, as well as the freedom you've been given to manage your care now along with their monetary support for test strips. Now that you've taken over the majority of your care, you're learning about a lot of 'advances and new thinking in D care' and your desire to incorporate these isn't a reflection on their care in anyway - just you doing all you can to make sure you live to a healthy old age and can spend time with them. Night testing and pumping are two of the treatment options that, while they maybe weren't considered necessary when you were younger, now receive support as the new standard of care. You'd really like to be able to share new insights in D care with them since they've been such a huge part of yours for so long, and you certainly don't want them feeling hurt by the changes since they did what people considered best at the time...

    That's just a suggestion, and only you know your parents, but it's a possible way to approach this - even if it's not 100% accurate. From a professional standpoint, if I ran into a mom acting like yours in nursing or counseling, chances are that I'd ask her to consider meeting with somone to help her overcome what really sounds like guilt - maybe she's like many moms out there whose child's endo never suggested night treatment. If I hadn't checked out this site, I might never have learned about night testing as a norm. I knew I felt the need to check, and puzzled by the strong resistance I encountered to doing so. I can only imagine the conflicted emotions not learning about the practice until many years later might raise, or the internal struggle someone might encounter having heard about it but being reassured it was unnecessary and accepting that, only to later learn it really was necessary.

    All of that said, you're an amazing presence and contributor on this forum, and have incredible insight and humor with regard to day to day life with D. My oldest is 23, and while non-D, she walked through some serious health issues due to an autoimmune condition, and later a traumatic brain injury. I know as both her parent and from nursing that it is not the norm to exhibit the kind of strength and thoughtfulness I saw in her or read in your posts (and Emma's, and Jonah's...) I hope that my younger two grow up to be much like all of you, and feel blessed that you all choose to participate here where kids like my dd with D look up to and enjoy the bunch of you.

    Until your folks can meet you half way and hear the message you so want to share with them, it might help to reach out to some sort of support group, or place where you can find some fellowship with people who do get D. Sometimes we're left with no choice to go outside our families to find that, and while it sucks, it doesn't help to stay stuck with the completely natural hurt or miffed feelings that such a clear lack of understanding or unwillingness to listen causes. (I can't ever know what it's like to have D, but I do get that piece of it having had lupus since my teen years, and parents who just couldn't even accept the diagnosis as real...) Looking for that support isn't a betrayal of your family, or even an act of turning your back / giving up on them. It's simply you taking care of you, because you both need and deserve to do just that.

    Sorry you're going through this right now, that it feels so lonely, and that for now the suck fest has no end in sight. I know it's cliche, but I promise, it really does get better. Growing older means growing away from our parents, and it's difficult on both ends. My 23 year old and I talk so much more now than we did when she was 18 / 19. Part of it is that we were so close, and went through so much together with her health issues, that it was really hard for either of us to let go. She makes far different choices about her autoimmune condition than I would, but it's her life, and her decision, and I respect that - now. We had our yelling moments when it wasn't quite clear who held the reins, and during the bumpy awkward part of the ride that involved handing them over. I'm pretty sure we were both afraid of falling of the cart and getting left behind. Now the dusts's finally settled, it's all good, and we're closer for it, too. (though I'm certain there are still moments she says she doesn't understand me at all. It's in the job description, page 92. ;)) Praying for the day you can look back and feel like that as well.
     
    Last edited: Feb 7, 2012
  9. Connor's Mom

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    As a mom, I don't ever want to be out of my son's care. I know he will kick me to the curb some day but, I hope he at least feels like he can bounce numbers or ideas off me.

    What I felt when I read your post was that your Mom is scared. She pushes you away because she doesn't know how to let you do it yourself without feeling excluded. When you try to include her, she seems to retreat which to me screams I can't do this! She wants to believe that she still knows what is best for you and you finding information that is different than what she knows scares her. How could "a 19yr old possibly know what's best? If he thinks he can do it better than he can do it, I won't help.". Is what I feel like is going through your mom's head. It might not be the case at all but, it's what I read into your post.

    Have you tried leaving information on things that you are trying "accidentally" lying around like on the kitchen table? Maybe if she came across it and read things for herself she would understand it better. If that doesn't work, I would definitely look for support in friends and support groups.

    Hang in there!
     
  10. Pauji5

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    that's not true. There have been several survey's and threads and most parents DO check at night.

    I know 2 adult women in my community with type 1...They both set their phone alarms to test at night.... A quote from one..."just when I think everything with D is going along fine, I have a super low in the night...My husband's called 911 twice in the past 5 years"....

    Sadly, you have D will need to take care of yourself for the next 70+ years.... Set your cell phone and just do it yourself... It really sounds like you're very efficient....So sorry your Mom seems to have dropped out of your care.
     
  11. emm142

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    I think Jonah was talking about parents in general, not the parents who are on CWD / other online communities. This community is hugely misrepresentative.

    And I can say that of all the T1s I know in real life, I am the ONLY one who sets alarms to check my BG overnight.
     
  12. TheFormerLantusFiend

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    Most parents HERE do, and they're the ones who answer internet surveys and threads. Most parents who simply go with what the doctor said, don't do overnight checks.
    If you can find any survey conducted from a representative sample (meaning, all parents in a certain area or at a certain hospital were asked, rather than a posting on the internet for anybody to answer) of parents of children or teens with type 1 diabetes anywhere where the majority checked overnight most nights, I'll say I'm wrong.
    Even on CWD, the majority do not check every night overnight. In the most recent survey on the CWD homepage, 155 out of 331- 47% to the nearest percent- checked every night overnight. That percentage has been climbing in every year since CWD started asking that question.
    31% checked overnight less than once per week.
    http://www.childrenwithdiabetes.com/poll/poll20100324.htm
    Parents who don't check overnight are less likely to be the sort of parents who would go looking for an online support group (like this forum).

    Even if I was diagnosed as a young child, I can say with certainty that the idea that my parents would get up in the night to check my blood sugar is absurd. When I was in the hospital at diagnosis, there were five other kids there wtih diabetes- two of them newly diagnosed. None of us got more than infrequent visitors, and my parents were the first to actually come in to learn how to deal with diabetes, even though they never ended up managing my diabetes outside the hospital. One of the other kids there had been there two weeks when I left because still nobody had learned to check her blood sugar or give her shots, and she was seven years old. There's no way her parents or her grandma (who was the one who visited) were gonna get up with her in the night. I've met a few adults my age with type 1 diabetes. None of them had parents who got up and checked their blood sugars in the night, and only one of them gets up and checks her own blood sugar in the night on a regular basis. A number who were diagnosed as a tweens or teens were doing all their own care from the get go and they didn't get up in the night with it. I do not purposefully wake up to check my blood sugar in the night on a regular basis, although since I wake up in the night multiple times per week because I don't sleep well, I end up checking blood sugar then.

    My impression from Timmy Mac's posts is that he has a dysfunctional relationship with his parents that is similar to my relationship with my own parents, where he would like his parents to give him more attention and respect and to take him seriously, and he's been taking care of himself for a while in ways he wishes they'd at least acknowledge.
     
  13. Amy C.

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    Most of the parents who answered the surveys check at night. The ones who don't aren't particularly active. A better survey would be to question the endo for which parents check at night.
     
  14. MommaKat

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    Agreed, yet even with this survey, endos who tell their patients and families that night testing is unnecessary (like ours) would likely find it a waste of time and not answer, skewing those results as well.

    I think about our center where they don't look at more than the last two weeks blood glucose values, disregard patterns of night time lows, and cannot create the narrative required by insurance documenting night time hypoglycemia and unawareness needed for CGM coverage. They don't think it an issue, so their attention does not go there - it's an issue of believing is seeing rather than the reverse. Some endos at the center believe cgm is a valuable tool, others like ours do not, and that belief dictates their care of patients.

    The same thing happens with parents. My ex is only able to hear our endo (night testing is not necessary), and thinks I'm listening to a bunch of zealots over involved in their children's care (this forum). He will likely never, ever night test, and our dd refuses to go to his house as a result. What makes me sad is that our kids (my dd, TimmyMac, etc.) get stuck between the conflicting ideologies when all they're trying to do is take the best possible care of themselves.
     
  15. Connor's Mom

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    My husband doesn't think the night testing is necessary because the Endo says they don't EXPECT parents to do it. If he were in charge of our son's care he would not test at night. I catch enough lows and highs that I will continue to do it.

    My nephew is 14 and he sets an alarm and tests himself at 1am. Does he always test...no but, he does at least 3 times a week. Will I test Connor when he is a teen...I'd like to think I still will. I am a worry wort and feel the need to check on all my kids at night. I listen at my 14 and 17 year old's doors when I check Connor just to make sure they are not having bad dreams. Silly right!

    I hope you can find a way to include your parents in this part of you. I didn't say your life because it isn't just something you can let go and change. It is part of you and I am sure ey know that but they need to see that you still need support even as an adult.
     
  16. babykat

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    our endo said that a child will wake up to being low and not to test at night. we didn't until my mom joined this board and there have been many a night where i was woken up (by mom) because she had tested me and i was in the mid forties:eek:! so i wonder why endos say these things when there are proven cases of nocturnal hypoglycemia/ hypoglycemia unawarness?
     
  17. babykat

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    I am so sorry that you feel that your parents are not involved in your diabetes. I cant imagine what your going through. I think your mom is so unhappy at what your going having to go through and i do not think she is mad at you. Sorry i am not there and don't know what is going on so please do not get mad at me.
     
  18. Timmy Mac

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    thanks everyone for your kind words and advice.

    I don't think I can't start typing a long reply without exploding about it again... So i'll just say thanks for everything and leave it at that. I really needed that:)
     
  19. MelStan

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    I'm really sorry that you don't feel more supported by your parents, whether you're 19 or not :( Living with T1 is a huge load and you need to be able discuss ideas re your care, or just vent when you need to and be heard.
    I'm sorry I can't help more. It makes me sad to think of any person feeling alone with this disease.
     

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