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No support from family?

Discussion in 'Parents of Children with Type 1' started by kirsteng, Jan 14, 2013.

  1. kirsteng

    kirsteng Approved members

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    I'm just wondering if this was also others' experiences when first diagnosed with type 1...

    DH has a big family here in our city, parents, grandparents, many aunts and uncles, 2 brothers and their families. They are not super-close, but do get together at big occasions throughout the year, and keep in touch by email the rest of the time.

    Since our little guy was diagnosed 3 weeks ago though, we've had exactly ONE facebook email enquiring how Grady/we are doing. ONE. No visits, no phone calls, no offers of help... nothing. We have 3 children, this happened just before Christmas and we had the whole Christmas break trying to deal with getting the treatments working, as well as entertaining our 8 and 9 year olds (not to mention Grady...). I just feel annoyed/disillusioned/disappointed/frustrated with every single one of them. I feel like if any of their children/families had been diagnosed with a life threatening disease, we'd have been there... offering babysitting, maybe making a meal, calling often to check in.

    Am I expecting too much?

    Dh's parents left to go for their regular 3 month winter trip to their condo in Florida 5 days after he was diagnosed. Not a call since, not a visit prior to leaving... and they drive down. Not like they couldn't have postponed their trip if they had wanted to...

    DH called his grandmother yesterday to say hi and see how she's doing. He thinks she actually must have forgotten about Grady's diagnosis, because she made small talk for 10 minutes, until DH said 'Grady's doing better'... to which she said "oh yes, how is the little guy?!".

    DH's brother emailed him today, DH opened the email thinking he (Grady's uncle by blood) would be asking about him. Nope - he needed DH to translate something into spanish for him for work.

    Sorry kind of a long vent... I'm just feeling :mad: right now.

    Have others experienced this too? Is it just that no one truly understands how big a diagnosis this is?? And they don't bother to google it??!
     
  2. kimmcannally

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    I think it is that they don't understand what a life changing event this dx is.
    A lot of people seem to think - oh, they just stop eating sugar and everything will be ok. They have no idea of the sleepless nights, the worry, the intense learning curve, the feeling of "I am now responsible for keeping my child alive!"

    I remember when J was dx, I was afraid to take him home! They offered to let us stay another night, but we had a snow storm coming in and I didn't want to be stuck there for longer than just one more night.

    Unless educated, most people just don't have a clue.
     
  3. KaseyK

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    Is it possible they dont understand the seriousness of the diagnosis or Type 1 Diabetes in general? I know I didnt know crap before my son was dxd - but maybe they would be more "willing" to be there if they understood? Im sorry though...its difficult enough to deal with this but to not receive help, sympathy or support from the family is even more tough. Hang in there!
     
  4. minniem

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    I agree with this. Most people have NO IDEA how much T1D affects people who have it. They think you can just take an insulin shot and all will be well. I'm sorry you feel so alone, try and hang in there and educate along the way. I know that personally I had no idea of how hard T1D was until my son was diagnosed. It's one of those things that you don't understand until you are living it.

    Just know it will get easier as time goes on. I remember hearing that right after diagnosis from people who had been there and I didn't believe it, but it's true. Good Luck! :cwds:
     
  5. quiltinmom

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    This exactly what I was thinking. :)

    I didn't really go through what you've gone through, because we have almost no family living near us. But I do know what it's like to be totally alone in this. I don't have any really close friends who have experience with type 1.

    I have started to get annoyed at doctors on TV and radio, etc. who talk about diabetes and lump them all together. Most of them don't make the distinction between type 1 and 2, which as we all know are very different. But most people don't know the difference. I didn't REALLY understand it, before DX. Most people, when I tell them DS has diabetes, they say something like, "oh yeah, my grandma has that." So they think they are familiar with it. But they don't even know the simple things, like testing BEFORE eating, instead of after. I still get people saying, "I didn't know if he could have that..." or, "will he outgrow it?" I don't blame others for not knowing any better (although our parents really ought to know by now! lol They live far away so they get a pass.) But I really do wish doctors (did anyone see dr. oz last week? ugh.) would specify. They should know better!

    I think, or at least, I hope, that they would be reaching out to you more if they knew how huge it was.

    Good luck!
     
  6. DsMom

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    To give people the benefit of the doubt, I do agree that most people have no clue about T1 and the time, energy, and worries that go into it. Also, maybe some people are waiting for you to take the lead and bring it up?:confused: Perhaps they don't know how much you want to share or discuss..and don't want to be intrusive? Again, that is to see the hopefully more positive side of things....but...

    Some people are just scared when things like this happen and retreat and don't want to discuss it with you. As if discussing it can bring bad tidings to their own families.:rolleyes: In this case, you have to decide how much you want this to affect your relationships. Personally, I would be very hurt...I think anyone would. But it is your call whether you can move past it and forgive...or if it will be a lingering hurt for you.
     
  7. Samna

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    Hi:
    I can understand your feeling and trust me you are not alone. My daughter 8y was dxd in June 2012 and i live with my husband and daughter in Toronto. No family at all. Everyone back home in India. Trust me my in laws never even ask how she is doing with diabetes at all, every week when we call them. They just casually ask how are things going on.
    I guess at the end of the day its just you and your family and no one else.
    Pray to God and be strong. We all will get a way.

    BTW see you at the conference.

    Samna
     
  8. Sarah Maddie's Mom

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    My biggest regret from our early days is that I didn't call a family meeting, or develop a 10 min "talk" to explain our new normal. My family and friends were noncommittally concerned but never actually learned how to help or understand what we were facing.

    You walk a fine line - you don't want to present your child as now so damaged, or so difficult to manage that people back off, but you need them to understand that 1. you didn't cause this, 2. it's not as simple as giving a shot and being done, and 3. that you'll need some respite and at least one or two adults who can learn enough to keep your child safe overnight in the event of your illness or emergency.

    In short, my advice is not to make the mistake that I did - don't wait for them to come to you. Think carefully about what they really need to know, make some notes and either call or meet or email to get the conversation going. Good luck.:cwds:
     
  9. DavidN

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    Neither my family nor my wife's family knew anything about T1D prior to dx.

    However one side has a history of making our kids their business. The other does not. One side went out of their way to visit and inquire as to the seriousness of T1D, the other could give a rats a$$.

    I don't think T1D creates family problems, just magnifies the ones already in place so that pretending they don't exist is no longer an option. IMO.
     
  10. Anyelday

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    I am sorry to hear you have so little support. It may be that they just aren't really sure what is going on and I'd give them the benefit of the doubt. My Eliza was diagnosed Christmas Eve and we have been blessed to have lots of support even though we are in Charleston and all of our family on both sides live in NJ. My mom came down to help for 10 days and now that she is home both she and my dad text me for Eliza's numbers during the day. My FIL has type 1 so my MIL and SIL were very concerned as well. I would let them know more about Type 1...they might be scared or unsure of what to say or how to help.
     
  11. obtainedmist

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    I know it hurts when people don't seem to care, but a friend gave me great advice when I had a miscarriage. Don't spend any energy being angry or disappointed by the lack of support from people who should know better...spend your energy getting the support you need from wherever you can! Also, you might just come out and ask for specific help from relatives. They might need to be taught how to support you while your family adjusts to this dx. Don't wait for them to ask what they can do...tell them what you need! Hope things feel better very soon! :cwds:
     
  12. rulestein

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    Hi, Mrs. R here. My heart sank when I read your post. I want to let you know I know how you feel!! My Husbands family has been amazing, and supportive and I'm beyond grateful for them. My family, however, has been nowhere. I only hear from my mom, who calls often for updates and to offer encouragement (she is a few hundred miles away). My dad has sent me a few texts and a card. I spoke with some other family over the weekend, and they didn't even know!!! We were dx mid December, and they still didn't know!! I have not even heard form two of my brothers, and one wants to help, but is 2,500 miles away with a family of his own. I feel totally abandoned by them. But, I agree with obtainedmist, get help where you can, and stay positive for your other two little ones, they need you!
     
  13. sarahspins

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    Ditto this.. and there are two nurses in my immediate family. I wish I could say they all know more 12+ years later but the sad reality is that most just don't. I realize that my situation is a little difference since I was diagnosed as a young adult and I wasn't living at home, but I would have appreciated more concern beyond them telling me I was doing it all wrong because I "shouldn't need to test so much"... something as simple as "I'd like to know more, where should I start" would have meant the world to me from my parents. My older sister is the only one that actually put any effort into learning anything about T1, but her interest was somewhat selfish - she was worried for a while after I was diagnosed that she could get it too, plus she's a scientist so she has a natural curiosity and desire for knowledge that most people lack. She's the only family member that never assumed she already knew everything she needed to know.

    My mom was diagnosed with T2 a few months ago and she's just barely beginning to grasp some of the things I'm dealing with all the time (carb counting, SMBG, and the constant stream of dr's appointments) and I hear a lot of "wow, I didn't realize it was actually like that for you".. and all I can think is yeah, that's because you never asked, you just assumed, and I could never say anything without being told I was wrong or I shouldn't have to do things that way. Her limited knowledge of diabetes stemmed from a few poorly controlled patients she'd deal with on occasion as a hospice nurse, a majority of which took a pre-mixed insulin twice a day and rarely tested... so of course if I had to test more often and take insulin more often I must not be doing it "right" in her mind.

    I got frustrated with my husband some time back and made him read Understanding Diabetes (the pink panther book). I still think there's a lot he doesn't get, but it also gave him a resource to go to rather than feeling like he was asking me stupid questions (which I never had a problem with, but I think it's a guy thing - like not wanting to ask for directions).

    Bingo... and it's interesting the dynamics you have with your family, we have those too, and that's without any medical issues with our kids. My husband's parents and my mom are super involved, always asking to see the kids, asking when we'll visit next or offering to watch them.. but the other set, my step mom and my dad, really seem to go out of their way to show that my kids just aren't important. They've never babysat, or offered to take them for a weekend, or really make it seem like they want to spend any time with our kids at all - if we visit, it's because I invite ourselves over. It's frustrating, but I also know my kids are not really missing out on much if that's how they are going to be.
     
  14. shannong

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    I think that ignorance around type 1 diabetes is why family and friends don't think it is any big deal. I think most people think, give them insulin, they will be fine. When I called my mother to tell her I had some bad news, and then told her about my son's diagnosis, she said that I scared her because she thought I was going to say he had cancer or something "far worse". My mother has now spent enough time with my son to understand the seriousness of this diagnosis. Honestly, I think only people that actually spend time with or care for someone with T1 diabetes understand all that is involved. I find myself frustrated by the ignorance, but other times I'm sometimes glad that others think it is no big deal because I think this helps my son feel its no big deal too (just trying to look at the positive side).
     
  15. Beach bum

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    Agreed.
    Ignorance:
    I have a friend who asked "when will this end, because you really need to get some time to yourself and go away with your husband" and another who asked why we were still doing the JDRF walk "you mean the insulin doesn't make it go away?" " I thought Juvenile Diabetes means she will grow out of it."
    But there are two problems. The first is that many people just don't want to hear about diabetes from us all the time. So, no matter how much we try to educate, it doesn't always sink in. The second is that we work so hard to show that even with diabetes our kids can do practically anything that they think that with insulin they will be fine and it's not a big deal.

    Even after 7+ years we still have family and friends who just don't get it. Could be because they don't see it everyday and forget all that's involved (most) or they just can't be bothered with the fact that there is so much involved and they are too self centered to consider someone else's struggles (few).
     
  16. Lisa - Aidan's mom

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    I'm sorry you are not getting support from your family!

    I do agree, it's the little information most people have about Type 1, they probably lump it together with Type 2.
    DS and I took a Mommy & Me class when he was 2, years before he was DX. There was a mom there w/ a two year old that had Type 1. I saw her test his finger and she told me he had diabetes and my ignorant remark was "oh he can't have sugar, right?" Flash forward three years and I ran into her at a T-ball game, just a few months after DS's DX. She was supportive and offered a lot of great advice and our boys are friends and go to the same camp. So, maybe it's better to get the support from 'those in the know' (like here at CWD ;) ).

    Good luck!
     
  17. liasmommy2000

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    I really think many people just don't get how serious it is. Our dd was five when she was diagnosed. My immediate family (parents, sisters, step parents etc) all were up at the hospital the next day and some were up there the next day too. Same for dh's brother and his wife. However dh's extended family, not ONE visited or even called and asked. Not even my FIL (MIL had passed away a few years previous). Now granted his family was going through some issues at the time and there was much drama, but I'm still disappointed about their lack of caring.

    And let me tell you, I was never terribly fond of my SIL before that. I didn't hate her, we just weren't close/not much in common and there were a couple of little things that had bugged me. But her and BIL being there meant a ton to us and is something I will always remember.

    (((HUGS)))

    ETA-Obviously it meant much to me that my family was there. However I never expected otherwise as they were/are so close to dd etc and my parents watched her at least three days a week during the day from the time I went back to work at two months until she started kindergarten.
     
    Last edited: Jan 15, 2013
  18. JNBryant

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    I agree with everyone here regarding the ignorance of some people towards T1. As much as I hate to say it, when you're dealing with family members, sometimes ignorance truly is bliss. My mother has been a nurse for many years, so after my son's dx I wound up getting lots of support from her as well has my grandparents. Everyone on my side of the family had a basic grasp of what was involved, so they knew it wasn't something 'easy' to deal with, and they were all incredibly upset. My husband's side of the family is a completely different story. Like you, we got no phone calls asking how our son was doing. No 'I'm so sorry' or 'is there anything I can do to help?'. At first I really wasn't bothered so much by it because I was trying to concentrate on getting a handle on all of the information I was being given by our endo. Now that we're 8 months into things, even with frequent visits, my husband's parents just don't get it despite us explaining things to them even when they ask.

    While I do understand that it's something they're not used to, we've gone over the basics many times with them and it just doesn't seem to sink in. The last time we went to visit, I told them that they need to check with either my husband of myself before giving my son anything to eat because I need to know whether or not he needs insulin to cover. Apparently they weren't listening because somewhere along the lines they gave him a piece of chocolate cake without telling me and told me that they felt sorry for him and felt that he deserved it. That's all fine and dandy, but I still needed to know because that piece of cake shot his BS sky high and had I known ahead of time, I would have been able to prevent the huge spike that I wound up having to battle for the next few hours. Now whenever we go there in the future, I'm going to have to watch him like a hawk because I don't want people sneaking him food. You'd think they'd understand something as simple as that, but they just don't. However, if they had to deal with T1 on a daily basis, it would be a whole different story!

    I find that some people would rather not acknowledge the problem because they aren't ready, they don't know how to open up to it, or they just don't want to have to take it on and get involved. You can try to open up to your family and as time goes on, they might just understand. Until then, you always have the wonderful people here on this forum who do understand and will be here to support you every step of the way!
     
  19. caspi

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    I totally agree. My family and friends have NO CLUE what we go through on a daily basis because I don't like to complain so they think it's no big deal. It truly IS a fine line and I wish I had said something from the very beginning.
     
  20. DsMom

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