Long time No post

Discussion in 'General Parenting' started by MaryB, May 2, 2009.

  1. MaryB

    MaryB New Member


    I've been mostly a lurker for such a long time, years in fact, but have gathered so much wisdom. My difficult child is now facing graduation from high school. I've held strong according to all I've read from this board. This board has been such a BIG HELP in making decisions regarding difficult child.

    I read every single day about all of you that I feel...um...like a lurker and maybe a stalker??!!!

    I'm writing today as difficult child is 18 and fixin' to graduation from HS. I'm constantly on the school and gratefully, I can check difficult child's grades online. I have gotten so much info from here that, well, the school "people" comment all the time how "we have never seen a child to get so many accomidations". So, thank every one of you for helping on this journey.

    My problem, is that difficult child is not ready to be on his own. Dealing with his cancer and other problems, frankly has taken a toll on me. I keep constant on my rules, my new husband is on board, but....he's the stepdad. difficult child does not respect all that husband does for him. I'm in a quandry. I wish difficult child would understand all that stepdad does for him. difficult child's dad--what can I say--he's an alcoholic and now has numerous other problems due to that. We've kept in constant contact--actually way too much for my comfort that at times I just don't want to answer the phone cuz it's xD. However, difficult child loves his Dad. With difficult child's condition, we need to talk--Dr appts, chemo therapy, etc.

    I don't know. Sometimes, I just want to scream!!! I'm in the middle of my current husband and xD and difficult child. Recently, all I can figure out, is to keep everyone separate from each other and keep the peace.

    Currently, we are taking him down from zyprexa. His current insurance (now that his is 18) doesn't cover future treatments. I've been doing what his pysch said to do (before coverage stopped) but it's almost 2 months and now...what do I do?? His Oncologist is not sure either as difficult child has turned out to be a "very special patient" ...great...just what we need. Why special? Well, difficult child, not only does he have emotional disorders (taking trileptal and zyprexa) his body DOES NOT LIKE the main chemo drug Methothrexate. It's been hell. It's causing nerve damage. His Onc is trying to find a doctor that can help, but so far, no go.

    We started out at 7.5 mg zyprexa, went to 5mg and for the last 2 months 2.5. I feel we're on our own as to what to do to take difficult child off the rest of the zyprexa. He's doing really well, actually, with just a little bit of a problem sleeping at night. I'm still keeping on top but just don't know where to go from here. What do you do when there is no psychiatrist to help?

    Thanks goodness for hair coloring as I'd be completely gray right now.

    If you've read this far, thank you. Sometimes, it just help to talk with others regarding our difficult child's.

  2. DDD

    DDD Well-Known Member

    It's nice to see you Mary. I don't have a clue regarding the issues you face
    but I sure wish I had some "magic" advice or answer. All I can say is that you sure have every reason to be proud of how you have handled these awful stresses. I'm sure "running away" has seemed like the right solution...at least once or twice. :D I'll cross my fingers that your next step is also a good one. Hugs. DDD
  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    You sure are dealing with a lot right now. Being in the middle like that, I don't blame you for wanting to scream. Wish I had good advice. Is he eligible for Medicaid? Sending supportive hugs your way.
  4. MaryB

    MaryB New Member

    difficult child is no longer eligible for Medicaid. He was at at one point when first diagnosed with ALL. His dad is responsible for his insurance, so while xDH was waiting on disability, difficult child was on Medicaid. Thank goodness as difficult child was in the hospital for about 3 months. Now, that his Dad has been granted disability, difficult child is on the State's insurance which is not that great. It still pays for most everything (again, thank goodness as there is no way his stepdad and I could pay for all the treatments, doctor and hospital bills).

    I do count our blessings as we would probably be in bankruptcy as this point. So, therefore, I should give xDH some credit for being able to take care of the medical for difficult child. difficult child has no idea what his stepdad and I have done to keep his dad off the streets (and yes, it came to that point).

    It's just so hard to not being able to tell difficult child the truth about everything that is going on. We (meaning me and his stepdad) feel that it would do no good and we just need to go along with everything. I know that xDH loves difficult child...there is no doubt...I just don't like what I've had to cover up for him in order to keep difficult child calm and doing good.

    Yes, at one point, I did try to tell difficult child about his dad. But, I had to retract. It broke difficult child's heart and he cried so much that I just couldn't do it. Just couldn't. It was at the beginning of difficult child's treatment for ALL. At this point, attitude is everything for survival. So, for now, it's my secret. I doubt that I'll ever tell difficult child about his dad and everything we've done to keep the truth from him. As you all can imagine...I'll do whatever it takes to keep difficult child healthy and alive.

    It's a fine line I walk with difficult child. I want him to be responsible as I've told him (and he believes) he WILL survive and life goes go. And with that, it means taking responsibility for himself. Yep...that's a hard one for him to grasp so I have to go back to what I've been taught regarding his mental disorders. Consequences for every action. And yep, I get "others" telling me I shouldn't be so strict with difficult child, but as we all know, consistency is imperative. It's a quandry but I'm doing the best I know how. If anyone has any suggestions, I'm more than receptive.

    I know that once difficult child graduates, he cannot live on his own. I have to constantly remind him to take his medications!! Of which there is a lot. difficult child is also afraid to be alone so...maturity is just not there yet.

  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    How sick does the chemo make him? My friend is 60 and just finished chemo. She could barely keep her eyes open and it was hard for her to keep going.

    From what I've seen of chemo, I wouldn't want my child to move out if he had to take it or if he had a life threatening illness like cancer. Perhaps he's more afraid than you know. I am thinking that I'd be worried less about the behavior, unless it is very extreme, right now. I'm wondering how much the illness affects him...he is still getting cancer treatment, right??

    Lots of luck and prayers.
  6. everywoman

    everywoman Active Member

    Mary, with some of our kids it takes a while after 18 to mature to the point they are able to be on their own. Your difficult child has a special situation that may keep him home longer. And that's okay.

    I so understand about hiding things about X. I hid things for years about my x from my oldest. Unfortunately, the truth does come out. I was lucky enough that easy child was old enough and mature enough to handle it all when he had to face the truth.

    I hope that the medications that your difficult child is on will help him recover and live a long and fulfilling life. You're lucky that you met a husband that is willing and able to step up to the plate. And while difficult child may not understand that now---one day he will and he will appreciate you for bringing him into his life.

  7. susiestar

    susiestar Roll With It

    I applaud you for sticking to the consistency. It would be REALLY easy to just let things "slide". I have a friend who homeschools her 9 sons. The 3rd oldest one got ecoli while she was preg with the next one. It was from playing in an old barn and being a kid.

    I watched her parent him through some horrendous battles. Through it ALL she kept the rules the same. It made him feel SAFE that he knew what the rules were.

    It also was way too long term an illness (kidney and liver transplants - separately and other surgeries too numerous to mention) to let him "slide" because then he would not learn what he needs to know to grow up.

    It was really hard on her, just like it is on you and stepdad. But in the long run in really does help, as long as medical issues are taken into consideration.

    Doesn't medicare cover psychiatrists? It did for us when we were on it about 6 years ago. It actually had better coverage for it than any policy we have seen since.

    Hugs to you and everyone!

  8. MaryB

    MaryB New Member

    The problem we're having, is that now that difficult child is 18, his insurance with the previous psychiatrist (which he had for years) stopped cause his was minor. It was through the County services. His psychiatrist didn't want difficult child to go through the County Services as an adult as difficult child is what is called "one of the success stories". psychiatrist feels that difficult child will fall through the holes (as an adult) and doesn't want that to happen. So, we're stuck trying to find another psychiatrist to monitor difficult child's final medications. difficult child has to stay on tripletal for mood disorders but also because his main chemo drug has caused nerve damage. Both his previous psychiatrist and a neuorologist determined that it was essential to stay on trileptal. However, difficult child doesn't need to be on zyprexa any more (he's made such headway!!!!) so I'm down to the last portion and don't know what to do know from here. His Oncologist also is not sure but trying to figure something out.

    I swear, if it's not one thing, it's another.

  9. TerryJ2

    TerryJ2 Well-Known Member

    Hi Mary, {{Hugs}}

    I feel for you and can really see your quandry.

    I would definitely keep him at home, and wait out the chemo and the side effects b4 even considering that he move out.
    Plus, he will take longer to mature so I would not have my sites set too high. When he's feeling up to it, he can get a job, even if it's min. wage, and contribute to your household.
    In the meantime, there has got to be some "hard-to-insure" insurance out there that you can find. I assume he's on Medicaid, and from what you say, it doesn't cover his trileptal. Maybe the pharmacist can help you. I'm sure they see every kind of coverage under the sun and can steer you in the right direction.

    Sometimes, talking to the oncologist isn't the best way, but talking to the oncologist's staff may work. The nurses and bookkeepers may have some ideas. Keep looking!

    I'm sending a ton of support.
  10. busywend

    busywend Well-Known Member Staff Member

    Mary, please update your profile as it says your son is 16.

    I am thinking that your son missed some crucial maturing years 16-18 due to the ALL and treatments. I think you will find him mature quickly over the next 2 years. It is truly amazing what a year can do. So, don't give up hope that he can live on his own someday. In 1 year he may want it so badly that he will take his medications on his own and cook and clean just to prove it.

    As for being in the middle - Ugh! I know that tug-of-war that you feel! My suggestion is to tell them to work it out without you one time. I bet they all settle down for a bit!
  11. AnnieO

    AnnieO Shooting from the Hip


    HUGS, for one.

    Also, there are a lot of ways to take care of those costs. The American Cancer Society has people 24-7 who can answer questions, be a shoulder to cry on, give you information and most importantly help you find ways to pay for everything. Call them. 1-800-ACS-2345. I wouldn't normally mention any company but they are nonprofit and can help.

    For you - I know this is rough. Can you do something for you, and you only? Can someone hang out with difficult child while you go goof off for a few hours or weekend? Or at least take a really long bubble bath? You deserve it.

    More hugs. PM me if you want more info on ACS.
  12. MaryB

    MaryB New Member

    Ya know...it's not all about me...thought sometimes I think it should be!! And I know that difficult child is no where ready to be on his own. It's the zyprexa that I'm questioning. We have one more month at 2.5mg and from there I don't know what to do to get difficult child off of it. I'm keep being persistent till I find an answer.

    Thanks so much for responding!! PS...I updated my signature but can't figure out how to make it "appear". Help??!!