Turning the tables - long

Discussion in 'Parent Emeritus' started by rlsnights, Sep 13, 2009.

  1. rlsnights

    rlsnights New Member

    Newbie here with a 26 yo difficult child 1 dual dxd severely physically disabled kid.

    Had to share my latest little trip to take him back to The City where he lives (100 miles away from us!!!) cause I know you will all appreciate the irony here.

    The only reason he was visiting us was because he had to or lose his housing. He'd been hospitalized for 8 weeks with 2 broken arms and broken femur after he provoked someone into assaulting him (or at least that's his current story).

    He wanted to leave AMA 5 days before they could get services in place to support his return home. At the discharge case conference (15 in attendance) he told them all he was leaving after the meeting, that they couldn't stop him (dummies had gotten him a loaner power wheelchair after I TOLD them not to) and that he didn't care if he lost his housing. (He'd only been there 2 weeks when he got hurt; IDEAL housing for him - with-c accessible studio, onsite nursing, case management, psychiatric care, special arrangements to hold housing during short term hospitalizations like this one as long as patient returns cooperatively - a dream come true if only he was paying attention.)

    Gritting my teeth, I finally coaxed him to come home to our house for the weekend while all the arrangements were put in place for him to go back to his house. Only reason I was there was as trustee for his special needs trust. We often end up paying for stuff MediCaid won't pay for like bath chairs. But we don't usually find out he needs them unless we go to meetings like this.

    Aside: We are not going to intervene like this again. If it means he's homeless again well so be it. He's more stable than he's been in years and we felt there was a good chance he would use the supported housing on-site services because they're easy to access. So we decided to intervene this time. Sigh. We can discuss enablement/rescuing vs. moral/ethical responsibility to care for someone who is clearly incompetent (no matter what a judge might say) at a later date. I can tell you about the time he called us on Christmas Eve to say he'd lost his housing and could we come get him and take him to his grandmother's for Christmas (7 hours drive one way) despite his not showing up to meet us as previously arranged the day before. We said "No, looks like you have some things to work out there that can't be done from grandma's house."

    Anyway, so here's the part I just had to share. I'm taking him back in a manual wheelchair so I have to push him everywhere we go (his arms won't reach to push the chair himself). We have to go back to the hospital to exchange the manual with-c for the power with-c. On the train all the way back to The City from our town he is getting more and more difficult. Once we're back in The City he starts railing at me about anything and everything. He cannot stand to be back and not go straight to his payee, get his check and go get high so he is doing his best to **** me off so I will do what he wants and take him to his payee first. Totally screwed up logic but that's him.

    When I insist that we stick to the plan and go to the hospital first difficult child 1 insists that we walk to the hospital from the closest transit station. I agree mostly because it's hard to get a rampcab and I didn't know which bus to take and the hospital was only about 10 blocks away. Plus I was getting pretty annoyed by this point and needed to blow off some steam physically - which is much easier done pushing a wheelchair than sitting around waiting for a taxi for an hour.

    He gets more and more obnoxious as we go. The sidewalks are poorly maintained and the curb cuts are rough. He yells at me I'm trying to dump him out of his wheelchair or let it go over backwards every time we hit a bump. (Of course I'm not doing anything of the kind.) He starts screaming at me that I'm making a scene as we walk down this busy city street because I told him to stop yelling at me.

    So the last 2 blocks are slightly uphill right? And even busier because of all the people coming and going to the hospital and pharmacy. He is ready to bust a gut because he can SEE the hospital and can practically taste the freedom of having a power chair again.

    I was close to seeing red by then and am only slightly ashamed to say that I decided to handle things differently than usual. Instead of being the calm, detached and mature adult or the screaming "you have finally gotten to me" parent, I just didn't say a thing. But I went slower and slower and slower.

    If someone stopped in front of us I stopped. Didn't ask them to move, just stopped. When they moved then we moved. If someone got in front of us who was going slowly with a cane we went at their pace. When the incline went up I went slower still. When we got to the crossing to the hospital I went out of my way to go to the part that didn't have a curb cut so we had to backtrack to the one that did.

    I have to admit it was delicious. The shoe was on the other foot and it felt great. I now understand why he gets such a kick out of doing this kind of passive aggressive stuff to us. It is heady. By the time we got to the hospital lobby he was beating on the arms of the wheelchair with his fists and practically jumping up and down in the seat trying to make me go faster. I just played dumb.:confused:

    Anyway, I finally take him in to the hospital and leave him to the ministrations of the social worker there. She was expecting me to take him back to his place and help coordinate things there with the nurse, etc. Instead I smiled sweetly, dumped his large grocery bag of stuff at her feet and told her that difficult child 1 felt he could manage things on his own from here.

    You should have seen the look on her face. She's a nice young thing but she's no dummy - couldn't be and work at The City's main welfare hospital. She got her face under control and turned to difficult child 1 with an inquiring look. He immediately told her "well pick my stuff up and let's get going." as if she were his servant. I left them to work things out.:D

    Last I saw of him, he was racing across the street in his zippy little chair (I was waiting for a cab in front of the hospital) two huge blue hospital bags tied to the risers on the back of his chair. Got to hand it to him, he's a resourceful little git.
  2. GoingNorth

    GoingNorth Crazy Cat Lady

    I am going to quote two people dear to me. My mother, dealing with her ONE HUNDRED YEAR OLD father, who is also a very rigid Aspie, said "being old, frail, or sick is NO excuse for being rude and demanding"\

    My late husband, who was ill and progressively disabled before he died, once asked me to give him a "few" before he came out to get together with family:--give me some time to adjust my attitude--being sick and in pain is no excuse for me being snappish.

    I firmly believe this. I'm on the autism spectrum myself, bipolar, and have mild fibromyalgia.

    You CAN still be polite and considerate with osteogenesis imperfecta. I supervised a young man with the disorder for several years. He was also wheelchair bound and used a power chair to get around.\

    I worked with him and my management to arrange a suitable work station for him, but other that he was nothing more than another dedicated worker on my team. In fact, sometimes seeing him in his wheelchair jarred me as I just didn't think of him as disabled.d

    I have NO patience with illness being used as an excuse for bad behavior in adults. We still have to fit in with society and that means interacting politely with others.
  3. GoingNorth

    GoingNorth Crazy Cat Lady

    I should clarify--adults who are ill but still know right from wrong, have the obligation to learn as much as they can about their illnesses and follow treatment plans and therapy.

    I don't disagree that some MI people are simply unable to take charge of their own care, and sadly here in the US, we've lost nearly all of the support systems once in place to keep these MI individuals and society both save.

    We basically "orphaned" a lot of MI people over the last 30 years or so and that is reprehensible.

    In addition, I come from a culture where it was the norm for children to live with their parents until they married.

    I think one thing that needs to be remembered with Trish's difficult child is that he's schizophrenic IIRC, and if he's getting the "needle" he is not cooperative with medications.
  4. Nomad

    Nomad Guest

    I think you've got his number.

    You've got to do what you've got to do.

    No need for you to be a part of his self deception.

    I agree with GN...he has a role to play in his own personal growth. You might be willing to help when and where you are able and when and where it wont hurt you. But he is an adult, and he has the obligation to learn about his illness (s) and take the bull by the horns and go forward....

    Also agree with GN and her family...sickness does not give one an excuse for rudness and cuts off my time with them.

    Hang in there...nice going.