I've been asked to draw my line in the sand....

Discussion in 'The Watercooler' started by timer lady, Mar 7, 2010.

  1. timer lady

    timer lady Queen of Hearts

    for me. My physical health. I've gotten 3 phone calls/one in home family therapist visit regarding how I'm looking lately. The level of pain I'm feeling; how I look today versus January 15th when kt came home.

    I can't even come up with an answer for that....kt knows her line in the sand to be removed from here. As she's so addicted to chaos & drama (being a teen girl & attachment disordered to boot) kt will always be a challenge. As are all our kids.

    I challenged this question as no one has found a respite program for kt as of yet; she is being turned down left & right.

    I challenged this question because our Plan B doesn't have a location.

    I also challenged this question because I'm confused by it. I'm in the midst of a series of bad days, a flare, whatever you might call it. My brain is a bit "swollen" as shown by the MRI I had last week. Nothing new to be honest. I don't think I signed any HIPPA for myself & the team to contact my MDs. Who knows as I'm handed at least a half dozen every time I attend a mtg for either of my children.

    I finally understood - I no longer have husband here to tag off to 24/7 & do not qualify for 24/7 help.

    I'm not hesitant to draw a physical line in the sand for myself - too confused on how to define it.

    Thanks for the ear - just needed to talk.
  2. klmno

    klmno Active Member

    ((HUGS)) I wish I had words that could help or at least make you feel better. Being a single parent is the hardest job I've ever known and I don't have the health problems you do. The system's idea of "help" for families doesn't seem to be the same as a parent's idea or need. I hope something breaks for you before kt pushes herself over that line.
  3. SRL

    SRL Active Member

    Linda, I seemed to remember that the Hippa laws actually gave MORE rights for healthcare providers to communicate about a patient's condition so I looked it up on the Hippa site and it looks like that is the case. If therapist is a family therapist and not just assigned to the tweedles, then I suppose you would be considered a patient as well so he or she would have authorization to communcate with the others without your consent.

    Does the HIPAA Privacy Rule permit doctors, nurses, and other health care providers to share patient health information for treatment purposes without the patient's authorization?


    Yes. The Privacy Rule allows those doctors, nurses, hospitals, laboratory technicians, and other health care providers that are covered entities to use or disclose protected health information, such as X-rays, laboratory and pathology reports, diagnoses, and other medical information for treatment purposes without the patient's authorization. This includes sharing the information to consult with other providers, including providers who are not covered entities, to treat a different patient, or to refer the patient. See 45 CFR 164.506.
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    SRL...that seems bass akwards to me. I have to sign a waiver or a release I guess it would be called just so my therapist can talk to my psychiatrist. I have to sign another release so my psychiatrist could talk to my GP about what went on when I was in the hospital. Cory had to sign a release in order for his providers to talk to me. I just had to sign a release for my ENT to speak to Tony about my care in case I became to ill to do it myself.

    Linda...I dont know how you draw that line in the sand. With chronic health conditions it is like nailing jello to the wall. What we can deal with one day, isnt the same thing we can do tomorrow. I dont know how you are managing to be honest. I have been sick for roughly the past 3 months with a few weeks thrown in where I felt okay. Im ready to throw in the towel. If I still had kids in the home I would go nuts. Ok, I am already nuts but I would be ready for the ward.

    I dont think you can draw a line in the sand. You just muddle by the best you can.
  5. KTMom91

    KTMom91 Well-Known Member

    I wish I had an answer for you, Linda. Sending hugs and support.
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    No answers here either. Sending support and continued prayers as always.
  7. timer lady

    timer lady Queen of Hearts

    Thanks ladies ~ I will be consulting with my physio, my neuro doctor & my GP on this one. I have no idea as to the line in the sand. No way to define it.

    Saying that, my health is what it is - I've come a long way, have a long way to go.
  8. busywend

    busywend Well-Known Member Staff Member

    Unfortunately, for most of us our line in the sand is probably when things have done too far. Most of us don't seek our own help until we are breaking down or realizing we can not handle things.

    I would imagine stress is not good for you. Ha! Try getting away from that one with difficult children!

    I don't understand what they want you to say? How do you look compared to January? What are you supposed to do with that one? How are you supposed to evaluate?
  9. SRL

    SRL Active Member

    I know it does, but if you read the language carefully it makes it clear that the intent is to increase control of your medical information when it comes to relatives, friends, etc, but to "improve" the flow of information between those who "need to know", meaning healthcare providers and insurance companies. Some providers may have you sign waivers authorizing contact, but they don't have to if it falls under "for treatment purposes".

  10. DDD

    DDD Well-Known Member

    I surely don't know how you can "draw the line" in advance when you don't have viable care options available. Doesn't make sense to me (although I have never walked in your shoes and can only imagine how difficult it is).

    Is it possible to identify activities that have become more difficult this year and alternate actions you would consider for the sake of your family? For example, could you say
    that the physical activity of maintaining Williams schedule
    needs to be addressed? Could you participate in important meetings via conference call instad of in person? Could the home visits be reduced so your schedule is not so frantic?
    Could you say that although you are comfortable with KT staying at home with you until she "hits her line" but that you need X support to reduce the stress?

    I can't imagine that they expect you to say "when my BiPolar (BP) to a certain number" or "when the pain pills stop working" etc. to identify a cut off point. Perhaps you could ask for a HHW or CNA to supplement your homelife so you can rest, not have
    to worry about household chores or kitchen duty they would respond. Perhaps they could provide transportation to the
    appointments for KT and you could participate via phone?

    I'm always rooting for you, Linda. It just seems like asking for a reduction in responsibilities might tide you guys over until the time comes when a viable plan for KT is necessary or available. As always, prayers go your way. DDD
  11. DaisyFace

    DaisyFace Love me...Love me not


    Thinking out loud here...

    Just wondering whether the team had a few erroneous assumptions prior to kt's release...? I wonder if they assume that kt living at home--in and of itself--is stress-free? I wonder if it never occurred to them that this very transition is a cause of stress...?

    And having never met you--BUT having plenty of experience with a difficult child of my own--I know that my stress levels are much different when difficult child is home and when difficult child is not. When difficult child is not here, I can relax...truly relax and get some free time to myself. But when difficult child is here...it doesn't matter what else is happening--I am "on duty"...I am alert, on guard, however you might categorize it.

    Is the team simply reacting to a change in your demeanor between then and now...? from relaxed to "on guard"...?

    Is their suggestion to "draw a line in the sand" a well-intentioned but meaningless request to try and get you to be as relaxed as you felt prior to kt returning home?

    Do they truly have nothing else to offer by way of respite or support service that could give you the "break" that they seem to be suggesting you take for yourself? Without those services--how can you possibly be expected to step away from your responsibilities as a parent to a difficult child?

    It makes no sense...
  12. Marguerite

    Marguerite Active Member

    Linda, you could draw a line in the sand, as you say, but it's a pointless manouvre if you don't know what side of the line to stand, or if people will just look at it dumbly and walk around it.

    In other words - there needs to be a well- developed plan approved by everyone, ready to switch to, at the point that you nominate. Oherwise it's a futile exercise.

    Right now husband is looking utterly exhausted and has pulled back from a lot of things he normally does. I'm also finding my level of fatigue is unpredictable. People (including you lot!) are nagging at us both to rest and pull back, tell people to fend for themselves.

    The trouble is, we have responsibilities we are stuck with. We've never put difficult child 3 into respite, because for us the problems it would cause (including the difficulty finding the right sort of respite for him) would be greater than any benefit. Similarly, we have mother in law relying on us (however much she wishes she could be more independent) and to some extent we can't back away from this.

    Our kids - the older three are increasingly independent, but when they call for help, they're not merely crying wolf. easy child 2/difficult child 2 calling yesterday about what to do about getting her sprained ankle seen to - I was able to extricate myself from taking her to the doctor myself, because of the strong ties we have already forged in our family (daughter in law looked after easy child 2/difficult child 2). But her cry for help today was also another time when I was needed. I was able to handle this remotely too. But I was needed to handle it.

    WHat I'm saying - when we're parents, there are some things we push ourselves to do, because if we don't do them then the alternatives will make life even more difficult for us. We make the sacrifices now, hoping that we've bought enough time and made enough progress, so in the rapidly-approaching future we'll be able to ease back a bit.

    It's all a considered risk, what we do. You pull back when you have to, as far as you can get away with. You try to put in provisions and other supports, but what are we expected to do when the unexpected things happen, or supports are not where they're supposed to be?

    Linda, as far as confidentiality is concerned - if what they are saying is the truth, then perhaps erring on the side of more communication is better for all concerned. Because if you are on the point of total collapse and all the balls you are trying to juggle in the air come crashing down, and people have no warning, then everybody (you, kt, wm, all the workers) will suffer badly. But if concerns are expressed in time for some extra bit of help to be put in place, or someone to finally organise respite, then surely that is a good outcome? If they all talk among themselves, there is a better chance of someone coming up with something useful in the brainstorming session. YOu don't have to do all the thinking for everybody; it's their job to also put some possible ideas on the table for you.

    If this talking together can get you access to more resources, it's a good thing. At least they're thinking about you and your health.

    If your health fails catastrophically, it is bad for a lot of people. If you can be supported at the early warning signs so your health does not collapse, it's a big win all round.

    It's not easy for anyone to parent a difficult child. When you're trying to manage it alone it's harder. When you're disabled or chronically ill, it's worse. When you're coping with teens, it's unthinkably difficult.

    How long has kt been home? How do you feel you're coping? have you got to the stage yet where you feel that you're barely coping from crisis to crisis? Or are you getting to the end of the day tired, but still feeling somewhat capable? or somewhere in between?

    Yes, you will look drawn and tired. Your workload has greatly increased. But looking drawn and tired doesn't necessarily mean there's a problem. It just means you have more to deal with.

    Remember when we were dealing with babies? All the jokes about lack of sleep, of feeling like you could barely get through each day? Then getting practically no sleep at night, getting up for feeds round the clock? Then trying to stagger in to work five days a week? People telling us we looked tired and worn out - but nobody then said, "You need to see your doctor." No, people just laughed and said, "This is your life for the next 18 years. Get used to it."

    No sympathy then.

    So you are really the only one to say if you're really struggling to cope or not. Because of your past health problems, people will now be watching you for worrying signs, even though the same signs in parents of a newborn wouldn't raise an eyebrow.

    Sharing knowledge and information about how you are, is the best way to keep people off your back. When people feel like they're kept in the ark about how you are really coping, they will be more likely to get pre-emptive. Keep them in the loop, make it clear when you are coping and when you need more help, and they should be more likely to let you set the pace.

    Be good to yourself, try to fine ways to relax your brain as effectively as possible. And use all the tools you have available.

  13. Steely

    Steely Active Member

    I don't know what to say other than I am thinking about you. You are in my thoughts and prayers, and I hope that respite can be found. Possibly the system needs to think outside of the box? Are there programs that will accept her just for the weekend, that normally help kids full time? Like an Residential Treatment Center (RTC) type setting, that helps her just on the weekends?
  14. timer lady

    timer lady Queen of Hearts

    Marg, you've made many valid points (& I promise to stop nagging). I appreciate all the good thoughts; all the wisdom you've shared here.

    The reality, which I pointed out Monday at yet another staffing for kt, (& others stated here) is I can't draw a line in the sand as there is no Plan B location yet alone respite. It doesn't matter if I'm feeling poorly or look haggard. It will take an emergency or crisis to get any help at this time. Makes me feel all "warm & fuzzy".

    At least the team looked a bit shamed ~ I asked them instead of putting me on the line to find the resources needed in case my health takes a major nose dive (unlikely) or kt blows.

    Again, thank you.
  15. Star*

    Star* call 911........call 911

    I think this is so backwards.....

    How about THEM coming to you first with - HERE is what we intend to do IF.....KT....a,b,c. THEN ask you "Now if your health should happen to x,y,z - what are YOUR plans?" I agree with Marg, wholeheartedly. On the other side of the coin - they really need to take care of first things first. I also understand your reluctance to jump up and say "Well I have problem x and problem y." It seems to me in my experience that the minute you say too much about your health here? It's a done deal - and there really isn't ANY more help for your child like you would expect. It just becomes a social services watch-dog project. Cart before the horse scenario in my humble opinion. Maybe it's different elsewhere, but here in SC the minute you reach out a hand and say "I'm physically or mentally challenged and I want to raise a child?" It's like the people you reach out to ONLY heard I'm challenged. Then the powers that be move in, and "do what's right for the child" whether it's what is really right or not. I've seen it happen too many times. So as for me and my house? We did the best we could until we couldn't and it should NOT be that way.

    Linda - I'm sorry about the line in the sand. Personally I'd add patio stones and tell them you see no stinking sand.
  16. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Star has a very good point. I do think the teams you have already in your life should be stepping up and setting certain things in place..or at least offering them to you as possible supports.

    The team for the kids...I am supposing it would be different for each one. For KT it would be more intensive because she is living at home but it could include such things as offering respite, transportation services, her PCA, etc.

    Now now this would be put in place if you got sick. Say you got the flu or another case of the shingles. This plan would go into place so KT would have the weekends away, transportation to school and appointments, her PCA with her at other times. ALL SO YOU CAN TAKE CARE OF YOU!

    Is that not doable? I would think so.
  17. Marguerite

    Marguerite Active Member

    Exactly. Good on you for making that point. I get so cranky with people who keep saying, "It's time to be easy on yourself," when they have no idea of the reality, and just how difficult it is, to pamper yourself when you have others depending on you.

    I'm glad they had the grace to look ashamed. I hope this now goads them into trying to put some practical help in place (including a viable Plan B).

    I wasn't having a go at you nagging - not at all. You're allowed to, because you and I have been in similar places. It's the well-meaning but totally unthinking ones who get on my nerves.

    A classic "Wizard of Id" cartoon comes to mind - the doctor is in the cells seeing to Spook. doctor comments that Spook is a bit run down, very depressed. "Try to get away for a while," the doctor advises Spook.

    I can really relate to that cartoon!

  18. TerryJ2

    TerryJ2 Well-Known Member

    I surely don't know how you can "draw the line" in advance when you don't have viable care options available. Doesn't make sense to me (although I have never walked in your shoes and can only imagine how difficult it is).

    I was thinking the same thing. I see you discussed it further with-Marg and Janet.

    Wish I could help somehow, but at least you have an ear here.
  19. timer lady

    timer lady Queen of Hearts

    This is becoming a non issue ~ see the update in general.